Hi everyone!!
It's me! I'm back!! Finally out of hospital, yahooo!!!! Now I would like to warn you all that this is a very long post and I talk about poo a few times. So relax get comfy, might I suggest a beverage? Don't get a snack though..I just mentioned I talk about poo, thats weird.
So as you may or may not have been able to tell - I am very excited to be out! I went in for ileostomy surgery last Thursday 15th of August and got discharged on Wednesday. I was in hospital for 6 days, which isn't so bad really except I was doing exceptionally well the day after my surgery. When you are feeling so well, its mega frustrating to not be discharged. (I will get to that part a bit later)
I was up and about hours after my surgery, able to go bathroom by myself and everything. Words cannot describe how happy I was about this. Alright, it wasn't all fun and games, I vomited every time I moved, but it beats having a catheter in any day. I must admit I was horrified when they suggested I go to the bathroom. Thoughts like "Ummm, have you just had your intestine pulled through your abdomen?" crossed my mind to say to the nurses, but once I actually moved, I realised I wasn't in anywhere near as much pain as I had expected.
The anaesthetists had given me a PCA machine (a machine where I control my pain relief) but they ended up taking it away by the morning as I wasn't using it enough. So after that it was just good old panadol for pain relief. The doctors prescribed heavier pain relief if I wanted it but I just didn't need it. I was also quite keen to get eating again and the stronger forms of pain relief always make me feel nauseous. That's me…thinking with my stomach!
After I spoke with the anaesthetists the physiotherapist came around to get me out of bed. Not only to get me out of bed but to go for a walk around the ward. ( I think my jaw hit the floor.. AROUND THE WHOLE WARD??) The nurses had just taken my blood pressure which was around 80/45. Now I don't know if you know much about blood pressures but I shouldn't really be functioning if it's that low. I have low blood pressure anyways but never that low. So needless to say I felt quite light headed and was proud of myself for just getting up to go to the loo (whilst being sick along the way) with my head feeling like it was spinning. The physio was lovely but kept trying to encourage me to go for a walk. We came to an agreement I would walk to the chair (next to my bed) not around the entire ward and would try for a walk in the afternoon.
After I had rested a bit though I was able to get up and go and have a shower all by myself. Which again I would have high fived myself about this if I could have as I was rather proud. (It's the little things when you have just had a major operation) Haha!
Now, don't get me wrong, I had some absolutely amazing nurses in hospital, some who I will never forget they made such an impact on me. Buuut there were also a few less attentive ones. They have a horrendously busy job which I do understand, but I was getting a upset because no one was checking on me and my new friend, who I have named Steffi by the way. (we will get into that later also) Without going into too much detail, I had to learn to empty my new pal all by myself because no one was checking on me or would show me how. Despite being right by the nurses station I could sometimes ring my bell and no one would be in for like 30 minutes so I took it upon myself to learn how. I was shit scared (pun intended) but got it sorted in no time. It actually helped me to be a lot more confident in the end.
Now about Steffi. Steffi the stoma. I have heard from many other people that have had an ileostomy that if you name your stoma then its less scary. It's less of a weird and gross thing and very medical sounding, to more of a friendly pal that will NEVER leave your side. You may think it's stupid and silly, but until you have a bag of poo attached to you..You have no say! Haha. So her name is Steffi, and for the most part, we are friends. It's a bit of a love hate relationship.
Now back to my story. So Saturday rolls around, 2 days post op and I am doing really well still but the doctors decided that they would like to put me on Metamucil to try and thicken up the output that's going into Steffi, and since then I started not feeling too well. Overnight I realised I didn't feel myself and had a really sore stomach which lasted all day. It got to the point where I was sure I was going to be really really sick, I couldn't move and went from being perky and relatively active considering what's just happened to not moving from bed and barely able to keep my eyes open. I kept saying I think I have a blockage and its the Metamucil but they weren't so sure. I kept being reminded I've just had major surgery my body is probably just recovering but I knew in myself something was wrong. Everything finally started unblocking itself by Sunday afternoon, it was very painful, and I was 100% convinced it was the cause of the Metamucil. I was mega pissed off because before the doctors prescribed me the Metamucil, I explained to them that I was certain it had given me a blockage when I had to drink 3 litres of the stuff a few weeks prior for my MRI scan. They said that it probably wasn't the Metamucil and even doubted it was Metamucil that I was given for the scan. Guys I drank 3 litres of the stuff, I'm pretty sure I know what it was.
I refused to take anymore of it and the nurses had to call the doctors in to see me because technically I was refusing to take my medication. (Rebel huh!!) Finally they admitted oh yes it seems that you did have a slight blockage. I was thinking SLIGHT BLOCKAGE, no no, it was completely blocked and unbelievably painful thank you!! The doctors then decided that they wouldn't prescribe me anything else and we would just see how things go. This made me pretty upset/rather mad as I was insanely eager to get home. I was thinking the whole reason I am in this situation is because things weren't slowing down by themselves, now my stomach is in overdrive because it has had such a bad reaction to the Metamucil, I was having to empty Steffi twice as much as what I was before they gave it to me, so I was like how are things going to sort themselves out?! I asked if i could take Gastrostop or Immodium but they said that we would have to talk to my surgeon and go from there. I was gutted because the following day was Monday (the day everyone had told me I would be going home)
It wasn't looking likely.
Monday morning comes and BIG SURPRISE….I can't go home and things aren't sorting themselves out. Tuesday morning still obviously not any better so they decide ok things aren't clearing up themselves (duh!) We will prescribe you with Gastrostop and see how you go. Me: WTF!!!!!?!?!?!??!?!?!??!?!?!? I had asked a couple of days earlier if this was an option!! I also asked my stomal therapist (who is bloody fantastic might i add) If I could speak with a dietitian as I was finding it hard to see how I could ever leave the hospital with the foods they were giving me.
I got to see the dietitian right away, she was the same one who I had previously been seeing to help me gain weight, so I was really happy as she knew all my history and is really nice. I explained how at home I eat smaller amounts more frequently and I was struggling in hospital waiting for my 3 meals a day to come. Then to finally get the meals and it was something like steak which was way too hard for my body to digest so soon after surgery or something with horrendous amounts of dairy in it which made me feel yuck. I was supposedly on a special diet but it was driving me mental. I said how can I go home, the doctors want the output (poo) to thicken up and slow down but I can't eat anything that I want. All I want is a bloody sandwich because I know that seems to help but I can't always order one as its not on my menu plan. She organised to have 2 lots of extra sandwiches to be delivered to me throughout the day with fillings that I can eat (theres many things to avoid once you have a stoma as things can get stuck quite easily and cause a blockage, also I am quite allergic to a few things) I was so happy because finally someone was listening to me and she completely understood about not being able to eat properly in hospital. I could have kissed her!! So I had my sandwich for lunch and by afternoon everything had slowed down and was behaving exactly as it should. I have no doubt that this was part taking the Gastrostop and part diet change.
The doctors came to see me in the afternoon and I couldn't wait to tell them the good news. They were still quite weary though after I told them and suggested I speak with a dietitian. I was so over them by this stage. HAVE YOU NOT READ MY NOTES. Seriously how does this place function! I happily explained though that I had seen the dietitian in the morning and we had sorted out food options and I was really happy with it all. My main doctor (surgeon), Dr Chow said that we would change my diet to a high fibre diet and see how that goes. I didn't really say anything as I was just really confused. Firstly I couldnt understand why my diet plan had changed despite the fact I had just spoken with the dietitian and I had said everything was going good. Secondly a high fibre diet has NEVER ever, been a friend of mine. If you wish for me to go to the bathroom and never ever leave, by all means give me diet high in fibre. After they left I thought, maybe by high fibre they mean things like more bread and pasta. Those are fibrous but really help to slow down and thicken up the output the goes into the bag.
When dinner came around though and it was, I shit you not, a plate of carrots, celery, beans and peas. For the lack of a better word, I started to lose my shit. Along with a pie, filled with gravy and you guessed it!!! Carrots, celery, beans and peas. Now just to let you know celery beans and peas are all on my list of things to avoid with a stoma, just in general, but definitely in the first 8 weeks as my body is still healing itself. Things with seeds (tomatoes, passionfruits etc), or a hard outter shell (beans, peas, corn etc) , or stringy things (celery, rhubarb..) can easily get stuck and create a blockage so its best off to avoid them. You can try them further down the track and as long as you chew it well, have no reaction and don't get a blockage then you are fine, but I had previously been told earlier in the day by my stomal therapist and the dietitian to not go near these foods for a while. And I got served it for dinner. Great. I had tried carrots a few days before this and my body wouldn't digest them either so I didn't see the point in eating that for the time being. All of these foods I have never had a good experience with before the operation, they gave me stomach pains, sent me to the bathroom and gave me bad wind. I was rather mad.
I called the nurse and said how I can't eat anything I was given so she called the kitchen to see what they had. The kitchen called back and said I could have mashed pumpkin. I told the nurse to forget about it as I was not going to have only mashed pumpkin for dinner. I felt really bad I was starting to lose it at her and the people in the kitchen could only give me stuff in agreement to my stupid new diet. She then asked if I would like some sandwiches. I practically screamed yes! This is what I had planned for my dinner in the first place! My sandwiches got sent up and guess what half the filling was?!! Carrots and tomatoes. I am allergic to tomatoes and had only just finished telling the nurse I can't eat carrots. I had managed to not cry until this point because crying really hurts my stomach but I just burst into tears and couldn't calm down. I had to send Will across the road to Subway and he got me a tuna sub because I was so hungry.
Wednesday morning came around, I had only had to get up once during the night and barely had to empty my bag at all. My nurse was appalled what they had given me for dinner. I didn't tell the doctors because I wanted to get out and I knew that I would start yelling and crying if we touched on that subject again. They were a bit apprehensive to let me go at first but they knew how much I was dying to get out so they made sure they gave me a lecture again for the 50 billionth time about keeping hydrated and off I went!!! I would have ran out of there if I could!
I have been doing really well since we have been home. Today I actually went somewhere. Will and I took a walk to Nundah Farmers Market, just down the road from us. It's only about 800 metres down the road and after less than half of that I thought I was surely going to fall over. We had to stop along the way for resting and re hydrating but I got there in the end. I had a lovely time, even though I was only able to grab some brekkie and sit down. It was nice to be out, the sun was shining and I was able to eat my yummy breakfast and people watch. There were some fantastic stalls but every time I started walking I couldn't really breathe so we had to set off back home.
I realised that when I would walk normally I would get an overwhelming feeling of not being able to breathe. I literally couldn't get any air into my lungs. As soon as I placed both hands on my stomach (looking like a complete idiot) I was able to walk without a problem. So tomorrow Will and I are going to go to the mall and see if I can find some sort of support garment that can help keep my stomach in place. This sounds easy, there are many types of support garments for woman out there (mainly to smooth out your flab) but they need to be Steffi friendly so if I will be able to find anything I'll be so happy. I have found something online that would be perfect, its specifically made for people with ileostomies, but it has to come from the USA so that will take a while and I need something for now. Its hard to get better when you can't breath and feel like your stomachs going to fall out!!
I have got my appetite back and haven't found many things that have disagreed with me so far. It's been wonderful. I lost even more weight after my surgery (which is normal) but I was down to 47 kilos (7.4 stone to my readers on the other side of the world) and on my 5'9 frame, I am fricken tiny. So having my appetite back and being able to eat normally again is doing me wonders. I have to keep an eye on my weight though and make sure that I am starting to gain it, so I have ordered some scales to monitor it. But with the amount I am eating I am pretty sure I am putting on weight. I'm still not eating huge portions, but I never did, I am able to eat regularly and healthily so the dietitian wasn't too concerned as long as I put it back on slowly and steadily. For those of you who know me I have a HUUUUGE sweet tooth. I was concerned for myself that I would get out of hospital and put all the weight I have lost back on in like 2 weeks from eating bad things but I have been really good! Go me!! The only "naughty" things I have eaten have been potato chips and marshmallows but they are things I have actually been told to eat by my stoma nurse and dietitian. Since my body doesn't use my colon now which is what you need to absorb salt, I have to get heaps of extra salt into my diet hence the potato chips! I used to be one of those people that would secretly be judging you if you poured heaps of salt onto your food before a meal. Now I am one of those people!! Only difference is you are probably going to have high cholesterol and a potential heart attack. I am not. Maybe I will still be judgey?! Haha. Oh and the marshmallows do wonders in thickening up the output, as do jelly babies I hear, but I am yet to try this. But don't you worry…I will test this theory out!
Anyways I have probably started rambling and you have stuck with this post for a long time now…So well done to you, thank you very much for stopping by and I will let you go!! :)
I will try and post every few days with updates of how I have been.
Love you all
H xx
Sunday, August 25, 2013
Thursday, August 8, 2013
Anaesthetist Appointment, Pre-Admissions and Stoma Nurse
Hey lovely readers,
Two days ago I went to the hospital to get the last things sorted before I go to have surgery next week. (It's actually only 1 week until I undergo my ileostomy surgery….eeeeek!!!)
First of all I had an appointment with the anaesthesiology team. They decided that they would put the PICC line in after they have knocked me out for surgery, which is what I wanted so I am happy about that. We then chatted about what pain medication I would have after surgery and we decided that I wouldn't be having morphine in my PCA machine because I get a little too drugged up. I will be having something else which I have had before that has a long name that I can't remember. It lasts only for 5 minutes at a time but I'm not too bothered about that, once it runs out I can just press the button again.
Next I had an appointment with the pre-admissions nurse. She basically just went over my previous surgeries and allergies etc. She gave me the dreaded Pico-Prep that I will have to take the day before surgery. UGGGGGGGGGGHHHHH!!! I can't even think about it or I will make myself sick. For those of you who don't know what Pico-prep is, it's a powder you mix up into a drink that cleans you out…VERY WELL. It is revolting, the taste lingers in your mouth and makes me feel so shitty. You can't even knock it back in one go because that can make you vomit. I have had this many times before for colonoscopies and I think most would agree with me that drinking it is worse than the colonoscopy itself. They have given me 3 sachets to drink. I'm thinking bloody hell, one of those sends me to the bathroom like you would not believe and I have TWO MORE OF THEM. I really do understand the importance of taking them, the area the surgeons have to work with, they need it to be cleared out and as clean as possible to make it easier for them, but also to reduce infection for myself. But there is still a big part of me that's like NO NOT DOING IT!!!
Annnyways!! The nurse asked me if I would like to go and speak with the stoma therapist as she was around and would be able to see me if I would like. I jumped at the chance! I had soooo many questions to ask her, I didn't even know it would be an option to speak with her before surgery as no one had mentioned it to me previously so I was pretty happy about that.
Good things I found out are that Australia has a pretty good scheme where stoma's are concerned. After my op, I will get signed up to become a member of the QLD Stoma Association, which is just up the road from me so quite ideal. It only costs $45 and then that covers all my ostomy supplies for the year. I will have to pay for delivery but that's minor, and because they are literally just up the road I could possibly pick them up. I am pretty relieved about that I was expecting to pay a lot more.
I mentioned to the stoma nurse (Linda) that I have really sensitive skin so she has given me some bags that i can cut up and stick little bits to my arm to see if any have a reaction which is good. ( I wont be walking around with poo bags attached to my arms guys) Just a tiny strip of the adhesive plastery bit! Haha. I must say I felt so prepared for this operation but I was still quite confronted when I saw the ostomy bags in person. I have seen them plenty of times in photos and videos but holding one in person and realising what it is going to do for me and where it is going to go was still quite a shock. I don't even know what I was expecting but I was kind of like is that it? Like…it doesn't come more high tech than this…? I know that sounds stupid but I did have a little moment of shock..but hey that's to be expected right?
We talked about many other things, Linda made me feel very reassured and was such a nice lady to speak with so I am really happy that she is going to be my stoma nurse. She also gave me her contact details so if I freak out or have any other burning questions then I can call her. Apart from that I will be seeing her next week before surgery, she will be marking me up for the surgeons once we chat about how and where I wear my clothes as to what is the best place for my ostomy. I am a bit apprehensive about this..what if I make a really shitty decision and it totally conflicts with my clothes? I have faith in Linda though…I think I will just leave it to her!
I will leave you with this picture which was in the pre-admissions room. I thought it was great, and would love to put it up at work sometimes ;)
Much Love
Holly x
Two days ago I went to the hospital to get the last things sorted before I go to have surgery next week. (It's actually only 1 week until I undergo my ileostomy surgery….eeeeek!!!)
First of all I had an appointment with the anaesthesiology team. They decided that they would put the PICC line in after they have knocked me out for surgery, which is what I wanted so I am happy about that. We then chatted about what pain medication I would have after surgery and we decided that I wouldn't be having morphine in my PCA machine because I get a little too drugged up. I will be having something else which I have had before that has a long name that I can't remember. It lasts only for 5 minutes at a time but I'm not too bothered about that, once it runs out I can just press the button again.
Next I had an appointment with the pre-admissions nurse. She basically just went over my previous surgeries and allergies etc. She gave me the dreaded Pico-Prep that I will have to take the day before surgery. UGGGGGGGGGGHHHHH!!! I can't even think about it or I will make myself sick. For those of you who don't know what Pico-prep is, it's a powder you mix up into a drink that cleans you out…VERY WELL. It is revolting, the taste lingers in your mouth and makes me feel so shitty. You can't even knock it back in one go because that can make you vomit. I have had this many times before for colonoscopies and I think most would agree with me that drinking it is worse than the colonoscopy itself. They have given me 3 sachets to drink. I'm thinking bloody hell, one of those sends me to the bathroom like you would not believe and I have TWO MORE OF THEM. I really do understand the importance of taking them, the area the surgeons have to work with, they need it to be cleared out and as clean as possible to make it easier for them, but also to reduce infection for myself. But there is still a big part of me that's like NO NOT DOING IT!!!
Annnyways!! The nurse asked me if I would like to go and speak with the stoma therapist as she was around and would be able to see me if I would like. I jumped at the chance! I had soooo many questions to ask her, I didn't even know it would be an option to speak with her before surgery as no one had mentioned it to me previously so I was pretty happy about that.
Good things I found out are that Australia has a pretty good scheme where stoma's are concerned. After my op, I will get signed up to become a member of the QLD Stoma Association, which is just up the road from me so quite ideal. It only costs $45 and then that covers all my ostomy supplies for the year. I will have to pay for delivery but that's minor, and because they are literally just up the road I could possibly pick them up. I am pretty relieved about that I was expecting to pay a lot more.
I mentioned to the stoma nurse (Linda) that I have really sensitive skin so she has given me some bags that i can cut up and stick little bits to my arm to see if any have a reaction which is good. ( I wont be walking around with poo bags attached to my arms guys) Just a tiny strip of the adhesive plastery bit! Haha. I must say I felt so prepared for this operation but I was still quite confronted when I saw the ostomy bags in person. I have seen them plenty of times in photos and videos but holding one in person and realising what it is going to do for me and where it is going to go was still quite a shock. I don't even know what I was expecting but I was kind of like is that it? Like…it doesn't come more high tech than this…? I know that sounds stupid but I did have a little moment of shock..but hey that's to be expected right?
We talked about many other things, Linda made me feel very reassured and was such a nice lady to speak with so I am really happy that she is going to be my stoma nurse. She also gave me her contact details so if I freak out or have any other burning questions then I can call her. Apart from that I will be seeing her next week before surgery, she will be marking me up for the surgeons once we chat about how and where I wear my clothes as to what is the best place for my ostomy. I am a bit apprehensive about this..what if I make a really shitty decision and it totally conflicts with my clothes? I have faith in Linda though…I think I will just leave it to her!
I will leave you with this picture which was in the pre-admissions room. I thought it was great, and would love to put it up at work sometimes ;)
Much Love
Holly x
Monday, August 5, 2013
Surprise weekend away in New Zealand
Hey everyone!
So I had a lovely weekend away - My husband (Will) and I snuck 'home' to New Zealand to surprise our families. For those of you who don't know me I am from New Zealand and still refer to it as home but I live in Brisbane, Australia now.
Now we have actually had this trip booked since June but didn't think it would go ahead because of my impending surgery, then constantly getting sick - but I got to go!!! YAY!!!!
My ileostomy surgery was originally booked for the 1st of August - the day we were meant to fly to NZ, so I was really gutted that I couldn't go but then having shingles actually turned out good for something, and pushed back the date of surgery meaning I could go.
Now to friends that we didn't tell about this trip or get to see, I am sorry - But it wasn't about you! Sorry - that sounds really bad!! But we went back to see our new niece, Mila, who was born in June who we haven't met yet and just to surprise our families and have a nice weekend with them. Because it was a surprise weekend away (our families had no idea) we couldn't risk telling anyone just in case the word got out! It was really nice to have a weekend away and see everyone before I go in to have surgery. I think it was also good for my family members because they had questions about the surgery that I was able to answer.
I was a bit hesitant about going on this trip. With finding out recently that I might not be able to have children, and with one of the main reasons of this trip to see my nieces (and I also went to visit my godson) I was a bit worried about how I would feel. But I was actually OK. It wasn't easy by any means but I had a really nice weekend away and it was amazing to see our families so I am really glad that I went :)
My second biggest concern this weekend was feeling left out and being a bit miserable because I would be drinking my shakes while everyone got to eat. Funny thing is, when I had my fortisip shakes, I actually started feeling really unwell. I got headaches, stomach was churning and felt really sickly. So I ate this weekend! While it didn't make me feel amazing, It was a darn site better than drinking the shakes so I was pretty happy about that.
I am counting down the days now until my surgery - 10 more sleeps! I am looking forward to it so I can get back to getting on with life and adapting to my new self! In saying that I had a massive freak out on the 1st of August, when I realised what day it was and that I was originally booked in for my surgery that day. I guess I am as ready as I can be for it. No one can particularly be looking forward to undergoing life changing surgery knowing that they will wake up with a poo bag can they?!
I have my anaesthetist appointment tomorrow so I will keep you posted on how that goes.
Much love
Holly X
So I had a lovely weekend away - My husband (Will) and I snuck 'home' to New Zealand to surprise our families. For those of you who don't know me I am from New Zealand and still refer to it as home but I live in Brisbane, Australia now.
Now we have actually had this trip booked since June but didn't think it would go ahead because of my impending surgery, then constantly getting sick - but I got to go!!! YAY!!!!
My ileostomy surgery was originally booked for the 1st of August - the day we were meant to fly to NZ, so I was really gutted that I couldn't go but then having shingles actually turned out good for something, and pushed back the date of surgery meaning I could go.
Now to friends that we didn't tell about this trip or get to see, I am sorry - But it wasn't about you! Sorry - that sounds really bad!! But we went back to see our new niece, Mila, who was born in June who we haven't met yet and just to surprise our families and have a nice weekend with them. Because it was a surprise weekend away (our families had no idea) we couldn't risk telling anyone just in case the word got out! It was really nice to have a weekend away and see everyone before I go in to have surgery. I think it was also good for my family members because they had questions about the surgery that I was able to answer.
I was a bit hesitant about going on this trip. With finding out recently that I might not be able to have children, and with one of the main reasons of this trip to see my nieces (and I also went to visit my godson) I was a bit worried about how I would feel. But I was actually OK. It wasn't easy by any means but I had a really nice weekend away and it was amazing to see our families so I am really glad that I went :)
My second biggest concern this weekend was feeling left out and being a bit miserable because I would be drinking my shakes while everyone got to eat. Funny thing is, when I had my fortisip shakes, I actually started feeling really unwell. I got headaches, stomach was churning and felt really sickly. So I ate this weekend! While it didn't make me feel amazing, It was a darn site better than drinking the shakes so I was pretty happy about that.
I am counting down the days now until my surgery - 10 more sleeps! I am looking forward to it so I can get back to getting on with life and adapting to my new self! In saying that I had a massive freak out on the 1st of August, when I realised what day it was and that I was originally booked in for my surgery that day. I guess I am as ready as I can be for it. No one can particularly be looking forward to undergoing life changing surgery knowing that they will wake up with a poo bag can they?!
I have my anaesthetist appointment tomorrow so I will keep you posted on how that goes.
Much love
Holly X
Thursday, July 25, 2013
Hi ho, it's back to work I go
Hi Everyone,
Just a quick update today to let you know that I decided to go back to work on Tuesday! Hooray!!!
I am still in a lot of pain but the more I stayed home, the more I would focus on how much pain I was in and feel sorry for myself! So on Monday, off to the doctor I went, who gave me the all clear to go back to work, although I must say it was a bit reluctant on his behalf! He wanted to write me a medical certificate for longer because he saw how much pain I was in and couldn't actually believe I was smiling through it all.
Going back to work has helped a lot, it has taken my mind off the pain, increased my appetite ( I have started becoming not so fond of the Fortisip drinks, so working helps me actually want to drink them) , and lastly its helping the shingles to actually go away!! Now we aren't going to get into details about this because its disgusting but they are clearing up and HOLY **** it hurts. Not to mention, looks sooooo gross. I am confident now that they should be gone by the 15th August (surgery date) Last week I wasn't so sure but there has been a lot of progress over the past 2 days. Downside is this is the worst pain I think I have ever been in and I don't know what to do with myself! Today and tomorrow are my rostered days off work so hopefully the pain has reduced before I have to go back again. In the meantime I think I am going to have to take some of those sweet codeine tablets I mentioned in my last post ;) I think I will have half the amount though because I find them rather strong on my little body at the moment.
Hope you are all doing well
Holly X
Just a quick update today to let you know that I decided to go back to work on Tuesday! Hooray!!!
I am still in a lot of pain but the more I stayed home, the more I would focus on how much pain I was in and feel sorry for myself! So on Monday, off to the doctor I went, who gave me the all clear to go back to work, although I must say it was a bit reluctant on his behalf! He wanted to write me a medical certificate for longer because he saw how much pain I was in and couldn't actually believe I was smiling through it all.
Going back to work has helped a lot, it has taken my mind off the pain, increased my appetite ( I have started becoming not so fond of the Fortisip drinks, so working helps me actually want to drink them) , and lastly its helping the shingles to actually go away!! Now we aren't going to get into details about this because its disgusting but they are clearing up and HOLY **** it hurts. Not to mention, looks sooooo gross. I am confident now that they should be gone by the 15th August (surgery date) Last week I wasn't so sure but there has been a lot of progress over the past 2 days. Downside is this is the worst pain I think I have ever been in and I don't know what to do with myself! Today and tomorrow are my rostered days off work so hopefully the pain has reduced before I have to go back again. In the meantime I think I am going to have to take some of those sweet codeine tablets I mentioned in my last post ;) I think I will have half the amount though because I find them rather strong on my little body at the moment.
Hope you are all doing well
Holly X
Friday, July 19, 2013
I have a date!
Hi All,
As some of you know, I have been hanging out for today to have my appointment with my surgeon, Dr Chow. I was hanging out for it because I really wanted to know when I would be going in for surgery and what type of surgery I would be having.
She told me I was originally booked in to have surgery on the 1st of August, in 2 weeks time which would have been great - the sooner the better in my opinion. I want to feel well again and want to start recovering and getting on with life ASAP. But if you have been following this blog you will know that last week I developed the bloody shingles (if you haven't read it already just click here for my last post) It is all over the left hand side of my belly around onto my back. Not ideal, so I have to wait for them to clear up before I can have the operation. I couldn't have got them somewhere else could I so it didn't have to impact on the surgery as much! But such is life I guess.
Because of this, Dr Chow has pushed the surgery back by 2 weeks to the 15th of August. A bit of a bummer but I had expected that it would be rescheduled, and it's only a month away. It gives my work more warning as well which is nice. I so hope that these shingles have cleared up by then, they have been showing no signs of backing off until maybe today- I think they looked slightly better ( I hope it is not wishful thinking on my behalf) The pain from them has also reduced considerably in the last day which is nice. It is still sore but no longer feels like I have broken my ribs or been set on fire which is nice change. That's what it was like every day prior to that - not nice at all. I had to take a lot of codeine and felt a bit of a space cadet at times because of this. Haha!
I have had to take over a week off work and potentially will have to take more if these don't start healing. It's very frustrating, but then again I don't want to be responsible for giving this to anyone. My GP said I should be able to go back to work by Saturday (tomorrow) but I spoke with another doctor who said don't go back to work until they have crusted over or gone scab like (I'm sorry that sounds so rank) which is what they need to go like for me to be at absolutely no risk to anyone. So for now I am still a recluse. Sigh! I think I will book in to see the doctor on Monday and get another opinion and see if they give me the all clear.
Bad things happen in threes right..I have had my 3 now. Universe I hope you are listening. You can stop now. Thanks!
Oh so back to the last thing - Probably the most important too - DUH nearly forgot!
The type of surgery!
Dr Chow would like to perform a temporary loop ileostomy. Which means that my colon would still be intact. She had a few reasons for wanting to do this. I wasn't so keen to begin with, I was set on having a permanent one for quite a few reasons but I am happy as I can be with the decision. Her reasons being she wants to give my colon a rest and see if it can be healed with medication and time out. (one day I could potentially be reconnected and not have a bag anymore) We both aren't too optimistic on this happening. She said I probably will have to have surgery down the track to remove my colon, but that is only if my colon continues to be a bastard and give me abscesses. Otherwise I can just keep the temporary one and all is dandy. The other reason being its a pretty major surgery to have everything removed, a long surgery, a long recovery time, and overall pretty drastic for someone my age (24) that still wishes to try and have children. By having the temporary ileostomy it might help keep my fertility a little bit better and give me a window of opportunity to try and have children. She was a lot more optimistic on the children front then my gastro specialist, but I am not keeping my hopes up. She still doesn't think I will be able to conceive naturally though. If you would like to have my babies for me, be the oven for my baby and all that jazz, just apply below in the comments section. Easy. Hahaha - I am joking…..Not really….Yes I am….?!
This surgery should only take about 45 minutes or so which is A LOT shorter than what it was going to be if it was permanent so I am pretty happy about that.
I have to go back for one last appointment before my surgery to see the anaesthetist, because if you haven't realised yet, nothing is simple with me! I will be seeing him in a few weeks in regards to getting a PICC line put in to my arm. We will need to discuss whether he would like to put it in the day before surgery or after. I am hoping before because it makes it a lot less painful for me…Then again if it's after surgery I might have some pretty sweet pain meds to counteract that! I also remembered I forgot to ask a pretty major question when I was at the appointment and then realised it is a question for the anaesthetist anyways so I can ask him then.
I don't tend to react well to morphine (even codeine a really weakened form makes me go to la la land) It also makes me itch if I have too much. Whilst the feeling is initially quite nice, I don't feel in control and I know I will be too away with the fairies for my liking. After the surgery I will be given a PCA machine. This stands for patient controlled analgesia. It means I can administer my own pain relief when I need to. After the last surgery I had I was given one of these. I told them of my dislike for morphine and got given something else which I don't remember the name of. I barely used it, the anaesthetist was really worried that I wasn't using it enough but I do just have a high pain threshold! The only annoying thing is the morphine lasts about an hour. You can only give it to yourself once every hour and it has a limit of how many times a day you can use it, so you don't overdose. The one that I had I could give it to myself every 5 minutes but that means that it wears off really quickly. I did like it a lot better but it wasn't as fun when I was made to have a shower and realised half way through I was in a shit load of pain, the same while doing my physiotherapy. So I need to discuss all this with him as well.
I have had quite the rant today, so thank you for stopping by! I also want to thank everyone that has been wishing me well, sending cards, and generally giving me all sorts of lovely things. I really really appreciate it. You guys are amazing.
Love to you all
Holly x
As some of you know, I have been hanging out for today to have my appointment with my surgeon, Dr Chow. I was hanging out for it because I really wanted to know when I would be going in for surgery and what type of surgery I would be having.
She told me I was originally booked in to have surgery on the 1st of August, in 2 weeks time which would have been great - the sooner the better in my opinion. I want to feel well again and want to start recovering and getting on with life ASAP. But if you have been following this blog you will know that last week I developed the bloody shingles (if you haven't read it already just click here for my last post) It is all over the left hand side of my belly around onto my back. Not ideal, so I have to wait for them to clear up before I can have the operation. I couldn't have got them somewhere else could I so it didn't have to impact on the surgery as much! But such is life I guess.
Because of this, Dr Chow has pushed the surgery back by 2 weeks to the 15th of August. A bit of a bummer but I had expected that it would be rescheduled, and it's only a month away. It gives my work more warning as well which is nice. I so hope that these shingles have cleared up by then, they have been showing no signs of backing off until maybe today- I think they looked slightly better ( I hope it is not wishful thinking on my behalf) The pain from them has also reduced considerably in the last day which is nice. It is still sore but no longer feels like I have broken my ribs or been set on fire which is nice change. That's what it was like every day prior to that - not nice at all. I had to take a lot of codeine and felt a bit of a space cadet at times because of this. Haha!
I have had to take over a week off work and potentially will have to take more if these don't start healing. It's very frustrating, but then again I don't want to be responsible for giving this to anyone. My GP said I should be able to go back to work by Saturday (tomorrow) but I spoke with another doctor who said don't go back to work until they have crusted over or gone scab like (I'm sorry that sounds so rank) which is what they need to go like for me to be at absolutely no risk to anyone. So for now I am still a recluse. Sigh! I think I will book in to see the doctor on Monday and get another opinion and see if they give me the all clear.
Bad things happen in threes right..I have had my 3 now. Universe I hope you are listening. You can stop now. Thanks!
Oh so back to the last thing - Probably the most important too - DUH nearly forgot!
The type of surgery!
Dr Chow would like to perform a temporary loop ileostomy. Which means that my colon would still be intact. She had a few reasons for wanting to do this. I wasn't so keen to begin with, I was set on having a permanent one for quite a few reasons but I am happy as I can be with the decision. Her reasons being she wants to give my colon a rest and see if it can be healed with medication and time out. (one day I could potentially be reconnected and not have a bag anymore) We both aren't too optimistic on this happening. She said I probably will have to have surgery down the track to remove my colon, but that is only if my colon continues to be a bastard and give me abscesses. Otherwise I can just keep the temporary one and all is dandy. The other reason being its a pretty major surgery to have everything removed, a long surgery, a long recovery time, and overall pretty drastic for someone my age (24) that still wishes to try and have children. By having the temporary ileostomy it might help keep my fertility a little bit better and give me a window of opportunity to try and have children. She was a lot more optimistic on the children front then my gastro specialist, but I am not keeping my hopes up. She still doesn't think I will be able to conceive naturally though. If you would like to have my babies for me, be the oven for my baby and all that jazz, just apply below in the comments section. Easy. Hahaha - I am joking…..Not really….Yes I am….?!
This surgery should only take about 45 minutes or so which is A LOT shorter than what it was going to be if it was permanent so I am pretty happy about that.
I have to go back for one last appointment before my surgery to see the anaesthetist, because if you haven't realised yet, nothing is simple with me! I will be seeing him in a few weeks in regards to getting a PICC line put in to my arm. We will need to discuss whether he would like to put it in the day before surgery or after. I am hoping before because it makes it a lot less painful for me…Then again if it's after surgery I might have some pretty sweet pain meds to counteract that! I also remembered I forgot to ask a pretty major question when I was at the appointment and then realised it is a question for the anaesthetist anyways so I can ask him then.
I don't tend to react well to morphine (even codeine a really weakened form makes me go to la la land) It also makes me itch if I have too much. Whilst the feeling is initially quite nice, I don't feel in control and I know I will be too away with the fairies for my liking. After the surgery I will be given a PCA machine. This stands for patient controlled analgesia. It means I can administer my own pain relief when I need to. After the last surgery I had I was given one of these. I told them of my dislike for morphine and got given something else which I don't remember the name of. I barely used it, the anaesthetist was really worried that I wasn't using it enough but I do just have a high pain threshold! The only annoying thing is the morphine lasts about an hour. You can only give it to yourself once every hour and it has a limit of how many times a day you can use it, so you don't overdose. The one that I had I could give it to myself every 5 minutes but that means that it wears off really quickly. I did like it a lot better but it wasn't as fun when I was made to have a shower and realised half way through I was in a shit load of pain, the same while doing my physiotherapy. So I need to discuss all this with him as well.
I have had quite the rant today, so thank you for stopping by! I also want to thank everyone that has been wishing me well, sending cards, and generally giving me all sorts of lovely things. I really really appreciate it. You guys are amazing.
Love to you all
Holly x
Monday, July 15, 2013
All my Shingle ladies
I like to think I am a pretty positive person. Nothing gets me down for too long when it comes to my health. I can always see the positive side and know it is going to get better. But guys… I am struggling today.
Quick recap for those of you who don't know: I felt really awful after my MRI from drinking all the bowel prep and I was having really bad stomach pains. I made myself a wheat bag and fell asleep on it, when I work up exactly where the wheat bag was, were blisters so I thought I had burnt myself. But they kept getting worse and the pain today was unbelievable!
I went to my GP today and she took one look at them and said they were shingles, and a very bad case of them at that. I was a bit surprised because I have never exhibited any signs of chicken pox before - but I must have had them and not known! Shingles is a virus that stays dormant inside you after you have had chicken pox and then when you are really stressed out or have a low immunity they can come out. It's safe to say I am both of those!
I got in touch with my IBD nurse straight away as I am due my next dose of Humira tomorrow and wasn't sure if i should still be having it. She is going to call me back tomorrow so we can talk more about it but said to not have the Humira. Really bummed about that, because I can feel myself getting sicker the longer I go without the Humira. Also if my surgery is booked in for the 1st of August like they thought it might be then these might not be gone by then and they probably will want to delay my surgery.
But how can I get better? I feel like I am stuck in a vicious cycle now and theres no way out. Having Crohn's so bad, needing to have an ileostomy and being on immune suppressors has lead me to break out in Shingles. I need to get healthier to get rid of the shingles for me to get my surgery and start Humira. But I cant because the Humira and surgery is what is going to make me better and more healthy….I also don't want to be on this stupid liquid diet any longer than I have to be.
So I am off work for pretty much the rest of the week and go back Saturday. The GP said if I feel ok to work I can because I am not contagious to anyone that has had chicken pox but to not be around pregnant women just to be on the safe side. But I work with someone who is pregnant so I have to stay away for a little while.
So far this has been a real downer post but I do have some LOVELY news to end it! My friend and workmate Nick stopped by after work with some absolutely beautiful flowers from the work team. If you read this guys - THANK YOU!!! It made me feel so much better, every time I look at them I smile and the card is lovely :)
AND! AND!!! NICK GOT ME MY VERY OWN OSTOBEAR!!! She will be coming with me for my operation. It is so cute and she is just like me! (well future me) I absolutely love her! I need name suggestions…anyone?
So even though I have had a crappy time lately, I have some truly amazing friends and family. That's what matters most.
Quick recap for those of you who don't know: I felt really awful after my MRI from drinking all the bowel prep and I was having really bad stomach pains. I made myself a wheat bag and fell asleep on it, when I work up exactly where the wheat bag was, were blisters so I thought I had burnt myself. But they kept getting worse and the pain today was unbelievable!
I went to my GP today and she took one look at them and said they were shingles, and a very bad case of them at that. I was a bit surprised because I have never exhibited any signs of chicken pox before - but I must have had them and not known! Shingles is a virus that stays dormant inside you after you have had chicken pox and then when you are really stressed out or have a low immunity they can come out. It's safe to say I am both of those!
I got in touch with my IBD nurse straight away as I am due my next dose of Humira tomorrow and wasn't sure if i should still be having it. She is going to call me back tomorrow so we can talk more about it but said to not have the Humira. Really bummed about that, because I can feel myself getting sicker the longer I go without the Humira. Also if my surgery is booked in for the 1st of August like they thought it might be then these might not be gone by then and they probably will want to delay my surgery.
But how can I get better? I feel like I am stuck in a vicious cycle now and theres no way out. Having Crohn's so bad, needing to have an ileostomy and being on immune suppressors has lead me to break out in Shingles. I need to get healthier to get rid of the shingles for me to get my surgery and start Humira. But I cant because the Humira and surgery is what is going to make me better and more healthy….I also don't want to be on this stupid liquid diet any longer than I have to be.
So I am off work for pretty much the rest of the week and go back Saturday. The GP said if I feel ok to work I can because I am not contagious to anyone that has had chicken pox but to not be around pregnant women just to be on the safe side. But I work with someone who is pregnant so I have to stay away for a little while.
So far this has been a real downer post but I do have some LOVELY news to end it! My friend and workmate Nick stopped by after work with some absolutely beautiful flowers from the work team. If you read this guys - THANK YOU!!! It made me feel so much better, every time I look at them I smile and the card is lovely :)
 |
| Roses and daisies..some of my favourites! |
AND! AND!!! NICK GOT ME MY VERY OWN OSTOBEAR!!! She will be coming with me for my operation. It is so cute and she is just like me! (well future me) I absolutely love her! I need name suggestions…anyone?
 |
| She has her own intestine poking out and all! |
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| Flannelette PJs and her own little baggy. Haha! |
So even though I have had a crappy time lately, I have some truly amazing friends and family. That's what matters most.
Holly X
Wednesday, July 10, 2013
MRI and Metamucil
Hey Peeps!
Just a quick update to let you all know how I went with my MRI scan today.
I had to go in a few hours before the scan to drink some bowel preparation. It was Metamucil (blugggh) Now it wasn't actually THAT bad, its orange flavour. BUT, it is like someones broken up heaps of hay into it or something, and I had to drink 2 litres in 2 hours AND if you don't down it quickly enough or forget to stir it, it starts congealing and turning to jelly..which is pretty gross! My stomach was bulging and very sore. The Metamucil is to make your stomach swell so the radiographers and doctors can see whats going on better.
Now the MRI itself I was looking forward to. I have had more than I can remember, and I find them really comforting. Some might see it as being slid into a coffin that makes a horrendous racket and freak out, and I can see why people wouldn't like it. For me its like being bundled up into a little warm cocoon and the rhythm is really soothing and always puts me to sleep.
This time though I found out I had to go head first on my belly into it, which I haven't done before and wasn't too sure about. I was strapped down by so much stuff, but it was fine :)
My veins didn't want to be caught today/ they never do. It took 4 goes to get my cannula in, the final successful go being in my wrist….ouch!
This reminded me I'm probably going to have to get a PICC line put in again before my operation. A PICC line for those of you who don't know is a plastic line that gets put in your arm, and then threaded through your vein and into your heart. It sounds really horrific and scary but it makes life so much easier for those with dodgy veins. I have such bad veins so I have had to have a PICC line twice now. Its a mini procedure to get it in..not the most pleasant, your arm ends up quite bruised and tender, and after they have to send you for an X-Ray of your heart to make sure the line isn't touching it. But they can stay in for quite a while and make it easy for when you have to have constant antibiotics and fluids pumped into you and constant bloods taken out.
Im at home with a sore belly feeling sorry for myself now, but I just remembered I opted for this..It was going to be a colonoscopy otherwise, this makes me feel better. Those are way worse!
Anyways I am off to hop in bed and have an early night.
Just a quick update to let you all know how I went with my MRI scan today.
I had to go in a few hours before the scan to drink some bowel preparation. It was Metamucil (blugggh) Now it wasn't actually THAT bad, its orange flavour. BUT, it is like someones broken up heaps of hay into it or something, and I had to drink 2 litres in 2 hours AND if you don't down it quickly enough or forget to stir it, it starts congealing and turning to jelly..which is pretty gross! My stomach was bulging and very sore. The Metamucil is to make your stomach swell so the radiographers and doctors can see whats going on better.
 |
| This was what I had to drink. Blugh! |
This time though I found out I had to go head first on my belly into it, which I haven't done before and wasn't too sure about. I was strapped down by so much stuff, but it was fine :)
My veins didn't want to be caught today/ they never do. It took 4 goes to get my cannula in, the final successful go being in my wrist….ouch!
This reminded me I'm probably going to have to get a PICC line put in again before my operation. A PICC line for those of you who don't know is a plastic line that gets put in your arm, and then threaded through your vein and into your heart. It sounds really horrific and scary but it makes life so much easier for those with dodgy veins. I have such bad veins so I have had to have a PICC line twice now. Its a mini procedure to get it in..not the most pleasant, your arm ends up quite bruised and tender, and after they have to send you for an X-Ray of your heart to make sure the line isn't touching it. But they can stay in for quite a while and make it easy for when you have to have constant antibiotics and fluids pumped into you and constant bloods taken out.
 |
| Waiting room selfie! This is me thinking I'm going to drown if I have to drink any more. |
Im at home with a sore belly feeling sorry for myself now, but I just remembered I opted for this..It was going to be a colonoscopy otherwise, this makes me feel better. Those are way worse!
Oh and Will and I got a beautiful bunch of flower delivered to us by Wills family. They are absolutely stunning. They are out in bloom today and look beautiful! Thank you guys, they put a smile on my face every time I see them.
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| Pretty <3 |
Anyways I am off to hop in bed and have an early night.
Love to you all!
Holly X
Wednesday, July 3, 2013
When you think it can't get any worse...
Hey guys,
As you may have picked up by the title of this post, it isn't the most cheerful update with the best of news. I was feeling pretty good last week until Sunday, when I started to have bad stomach pains. I felt pretty rotten on Monday and Tuesday so i stopped eating completely (even though I wasn't having much to begin with) and have just stuck with my Fortisip drinks. Sigh! For those of you who don't know me, I am a MASSIVE foodie. I love my food and am constantly snacking on something. Whilst I am enjoying the drinks its starting to SUCK having no food. One month to go! Arggh!
I had another appointment with my gastro specialist, Dr Florin yesterday. I have started back onto injections which I have previously had before called Humira. I find they help a lot but I'm not entirely sure if they are as effective as which they once were. This operation couldn't come soon enough.
While I was in there he told me some pretty upsetting news that I wasn't expecting to hear at the time. I am not dealing too well with it to be honest. Its something that I have thought might be a possibility but it was just that, a possibility and that it might not happen to me. I am pretty optimistic so I've never let it get me down and thought "we will cross that bridge when we come to it."
Until yesterday.
It is highly unlikely that I will ever be able to have children.
I haven't told my family or close friends yet, except for my mum, and sorry guys that you will probably read it here first. I'm just too devastated at the moment to tell people without bawling my eyes out. I can't even handle seeing children on the TV as it just reminds me of how much I want to be a mum and that it may never happen me. So needless to say, I am not feeling too well. I could go on about how much this sucks and is going to effect mine and Wills lives but that's a post for another day I think. For the meantime I have to focus on getting myself better. When I am ready Dr Florin will refer Will and I to see his wife, who ironically is a gynaecologist and fertility specialist, and with her we will discuss our options.
I don't think I could get through any of this without Will, I am the luckiest girl alive to have him by my side and he makes everything ok again. He is an absolute rock and came home to be by my side as soon as I told him the news. We played Mario Karts and watched Madagascar because I needed some cheerfulness, and nothing makes me (Luigi) more cheerful then chucking turtles and bananas at Will (Mario)
Love to you all
Holly
As you may have picked up by the title of this post, it isn't the most cheerful update with the best of news. I was feeling pretty good last week until Sunday, when I started to have bad stomach pains. I felt pretty rotten on Monday and Tuesday so i stopped eating completely (even though I wasn't having much to begin with) and have just stuck with my Fortisip drinks. Sigh! For those of you who don't know me, I am a MASSIVE foodie. I love my food and am constantly snacking on something. Whilst I am enjoying the drinks its starting to SUCK having no food. One month to go! Arggh!
I had another appointment with my gastro specialist, Dr Florin yesterday. I have started back onto injections which I have previously had before called Humira. I find they help a lot but I'm not entirely sure if they are as effective as which they once were. This operation couldn't come soon enough.
While I was in there he told me some pretty upsetting news that I wasn't expecting to hear at the time. I am not dealing too well with it to be honest. Its something that I have thought might be a possibility but it was just that, a possibility and that it might not happen to me. I am pretty optimistic so I've never let it get me down and thought "we will cross that bridge when we come to it."
Until yesterday.
It is highly unlikely that I will ever be able to have children.
I haven't told my family or close friends yet, except for my mum, and sorry guys that you will probably read it here first. I'm just too devastated at the moment to tell people without bawling my eyes out. I can't even handle seeing children on the TV as it just reminds me of how much I want to be a mum and that it may never happen me. So needless to say, I am not feeling too well. I could go on about how much this sucks and is going to effect mine and Wills lives but that's a post for another day I think. For the meantime I have to focus on getting myself better. When I am ready Dr Florin will refer Will and I to see his wife, who ironically is a gynaecologist and fertility specialist, and with her we will discuss our options.
I don't think I could get through any of this without Will, I am the luckiest girl alive to have him by my side and he makes everything ok again. He is an absolute rock and came home to be by my side as soon as I told him the news. We played Mario Karts and watched Madagascar because I needed some cheerfulness, and nothing makes me (Luigi) more cheerful then chucking turtles and bananas at Will (Mario)
Love to you all
Holly
Saturday, June 29, 2013
Special delivery!
Hey Team!
Just a quick post today.
I got my delivery of Fortisip nutritional drinks yesterday. So this is me for the next month!
I'm actually not that sad. They're flippin delicious. I would like to know if other people love these drinks or if I'm just a weirdo…? I'm always pretty intolerant to dairy so I tend to steer clear of it. But these are really low in lactose and don't make me feel ill at all. I'm loving the fact that I get to drink a banana, strawberry, vanilla, coffee or caramel flavour milk shake 5-6 times a day! I'm sure they will be sending me to the dietitian again soon to lose weight! haha.
I'm feeling really proud of myself today. I had a really good day at work and have sold the most travel this month, which is a little goal I had for myself. If I can do that while feeling like I do, imagine what I can do when I'm better!
Love to you all,
Holly
Just a quick post today.
I got my delivery of Fortisip nutritional drinks yesterday. So this is me for the next month!
 |
| My meals for the next month :( |
I'm actually not that sad. They're flippin delicious. I would like to know if other people love these drinks or if I'm just a weirdo…? I'm always pretty intolerant to dairy so I tend to steer clear of it. But these are really low in lactose and don't make me feel ill at all. I'm loving the fact that I get to drink a banana, strawberry, vanilla, coffee or caramel flavour milk shake 5-6 times a day! I'm sure they will be sending me to the dietitian again soon to lose weight! haha.
I'm feeling really proud of myself today. I had a really good day at work and have sold the most travel this month, which is a little goal I had for myself. If I can do that while feeling like I do, imagine what I can do when I'm better!
Love to you all,
Holly
Friday, June 28, 2013
Surgical Appointment
Happy Friday!
(slash Thursday as I have readers on the other side of the world now - go me!!) LOL
It was a semi big day for me today, I got to meet with my doctor that will be performing my ileostomy surgery, Dr Chow.
It was a relief to meet her, I knew she was a lady before going into the appointment, but all I could picture in my head every time they said Dr Chow was this guy.
She is the complete opposite to that guy - fewf! Really friendly, kind and confident, so I feel safe putting my life in her hands.
(slash Thursday as I have readers on the other side of the world now - go me!!) LOL
It was a semi big day for me today, I got to meet with my doctor that will be performing my ileostomy surgery, Dr Chow.
It was a relief to meet her, I knew she was a lady before going into the appointment, but all I could picture in my head every time they said Dr Chow was this guy.
 |
| Chow from the Hangover films, who is also a doctor in Knocked up. |
She is the complete opposite to that guy - fewf! Really friendly, kind and confident, so I feel safe putting my life in her hands.
We talked about the surgery, but she couldn't give me too much information as I haven't been able to have an MRI scan yet, so she cant see whats going on.
She discussed how she would like to give me a temporary ileostomy if possible. This will mean that they leave my colon still chilling out inside me, give it time to heal, so one day we might be able to reconnect that bad boy back up after it gets a good rest.
I don't think that will happen. I know my body quite well and I think it will be too damaged, but we will wait and see the MRI results. I don't even know how I feel about having a temporary one to be honest. I don't think I like the thought, weird huh? If it's permanent then I have to deal with it, and Ive already got my head around the fact that it will be permanent. If it is temporary I may have to have another surgery down the track to reconnect myself back up, that will be up to me but I don't want to give myself false hope that I might one day get to go back to normal. But like I said, I will be very surprised if that happens. She talked over what would happen with either situation though, what she will do in surgery for which ever one we decide (permanent vs temporary), the recovery time etc
My biggest question was about having children. When I have children, I will have to have a caesarean because of all the complications Crohn's has given me. So i was really worried that having already had a resection on my stomach, and then having another operation with the potential for one down the track that I might not be able to have them. C sections are pretty invasive as is my surgery and they can only operate so many times (3 I think usually for c sections) But providing that every thing goes to plan she is going to perform key hole surgery through my pre existing scars - hooray! So she will be going through my belly button if she can. I may lose my belly button when they stitch me back up, I don't know how i feel about this. It's absolutely pointless having it but I'm going to look weird without it…Then again I'm going to look weird with my poo in a bag next to me too! haha. But yes children will be ok, providing I don't have a tribe. Which is fine by me!
I go back to see Dr Chow on the 19th of July, once the results come back from the MRI scan, which I will be having on the 10th of July. She said her waiting list is around a month but she will pencil me in now, which I thought was great news! Well...until I came out of the appointment and Will and I were like, is she penciling me in a month from now or a month from the 19th…? Either way we are predicting August sometime. Really good to have a time frame!
I still can't believe how much I am looking forward to the surgery. I know it's going to be dreadful at first but I cant wait to be healthy again!
I had to miss out on my friends leaving party yesterday due to not feeling well. It wasn't even my belly playing up this time. Not eating has given me serious withdrawals, I think my body was cranky at me for not providing it with its usual gluten and sugar so thought, right you shall get a migraine for that! I have to bail on pretty much every night out and even though I can't help it I feel like such a crappy friend! I'm sorry Lika, I will seriously miss you and will try to fly to Samoa ASAP for a visit!
Well my friends, I shall be off to work now. Some how through this all I still manage to work full time. Probably a contributing factor to not feeling well sometimes, but also what distracts me from being sick at the same time. Catch 22!
Love love love
Holly X
Thursday, June 27, 2013
The dietitian was smaller than me
Yesterday I went to see the dietitian and have been put on a "no feed" diet *cries*
I have been given these nutritional drinks called Fortisip to have instead. They are high in calories, vitamins and full of all the stuff you want if you are malnourished. They are going to allow my belly to have a bit of a rest and hopefully allow me to gain weight, if not at least maintain it. I have lost a kilo just in the last week and am down to 48.8 kilos. For those of you who know me I am 5'9 and never usually a big person to begin with, but this is way too small, I'm feeling all skin and bones and really unattractive. A recent thing that has been happening lately, is that my hair has been falling out because I'm not getting the nutrients I need. Here's hoping these drinks help otherwise next time you see me I will be bald!
Downside of only having the Fortisip is that I've still been feeling hungry and every time someone mentions food I lose my train of thought. I've decided I am going to have little bits of food when I can manage it, like last night I had half a wrap which was nice and soft and filled the void, and didn't make me feel yuck at all. WINNING!
Second downside…the cost $$$
While you may be thinking..Holly you said you were given these drinks?! I was given enough to last me until my $249 prescription gets filled and delivered.
But you gotta do what ya gotta do I'm afraid! If this makes me healthier and less likely to get an infection post surgery then I am keen.
I am yet to go near the tropical flavour drinks I have been given to try. I do not want a milky like tropical drink unless it is a pina colada thank you very much.
Also the dietitian was tinier than me and I felt really awkward asking her for advice on how to gain weight. I can assure you she was a perfectly healthy person but I still felt weird!
Love to you all
Holly X
I have been given these nutritional drinks called Fortisip to have instead. They are high in calories, vitamins and full of all the stuff you want if you are malnourished. They are going to allow my belly to have a bit of a rest and hopefully allow me to gain weight, if not at least maintain it. I have lost a kilo just in the last week and am down to 48.8 kilos. For those of you who know me I am 5'9 and never usually a big person to begin with, but this is way too small, I'm feeling all skin and bones and really unattractive. A recent thing that has been happening lately, is that my hair has been falling out because I'm not getting the nutrients I need. Here's hoping these drinks help otherwise next time you see me I will be bald!
Downside of only having the Fortisip is that I've still been feeling hungry and every time someone mentions food I lose my train of thought. I've decided I am going to have little bits of food when I can manage it, like last night I had half a wrap which was nice and soft and filled the void, and didn't make me feel yuck at all. WINNING!
Second downside…the cost $$$
While you may be thinking..Holly you said you were given these drinks?! I was given enough to last me until my $249 prescription gets filled and delivered.
But you gotta do what ya gotta do I'm afraid! If this makes me healthier and less likely to get an infection post surgery then I am keen.
I am yet to go near the tropical flavour drinks I have been given to try. I do not want a milky like tropical drink unless it is a pina colada thank you very much.
Also the dietitian was tinier than me and I felt really awkward asking her for advice on how to gain weight. I can assure you she was a perfectly healthy person but I still felt weird!
Love to you all
Holly X
Tuesday, June 25, 2013
Feeling Positive
Hellooooo!
So today I had my appointment with my gastroenterologist, Prof Tim Florin, who I just think is amaze-balls. He pulled his contacts and got me an appointment with the surgical team this Friday! Otherwise I would be waiting a LONG time (the joys of the public health system) Whilst there, my IBD nurse, Heidi, who I also think is amazing (throwing around this term a lot right now) got me an appointment tomorrow with a dietitian.
Basically the last 4-5 days have been exceptionally worse than my usual worse…if that makes sense? What I am trying to say is I have Crohn's that's flaring…so I always feel like crap, but lately I have been CRAP. So I haven't been eating properly because it hurts or sends me into the bathroom for hours on end, usually in the middle of the night so I am getting no sleep either. The dietitian is going to have a chat with me tomorrow and I will probably get put on these drinks called Fortisip. I have had them before and I didn't mind them to be honest. They are meal replacements so I can just get my on the drinks if I need to and hopefully give my poor belly a rest. The only thing I'm worried about is what if they send me to the loo too! Only time will tell… I shall keep posted about that.
Also on a side note, I haven't cried at all about this operation until today! Heidi (ibd nurse) is just so motherly and caring that I just fricken well up every time I see that woman and have a good old cry. I wasn't bawling my eyes out or anything but I shed a few! Haha.
The last few days I have been investigating the shit out of stoma's and all that jazz and have come across some ABSOLUTELY lovely ladies on twitter. A couple have vlogs (if my mum reads this, that is a video blog :P) so I have seen them talking about living with a stoma, asking peoples questions, and basically just showing everyone that its possible to lead a perfectly normal life after an ileostomy. I am feeling inspired and very positive about it all which is a good thing. I know its not going to be all fun and games and fairies and unicorns and pretty things. Its going to be down right disgusting at times and things probably wont go to plan, but I am a tough nut to crack and it will not get me down.
I can't wait to see the surgeon, I have A LOT of questions to ask… It would be nice to ease my mind a little bit. I'm really hoping to get an idea of when this surgery will be. Unfortunately the MRI department haven't been playing along so nicely (you guys don't get a shout out for being amazing) (they're actually really lovely from previous experience and I take that back)
I have to get an MRI so the surgeons can see what they are dealing with and then can work out the urgency of it all and can schedule me in. The MRI department came back with an appointment time at the end of August. 2 months away!! At the moment I'm struggling to see how I can get through 2 weeks! So my gastro specialist, Tim, is going to have a wee chat with them and see if we can get me in urgently. Its looking like I'm probably not going to have it before the surgical appointment which is a bit dumb, so its unlikely that they can schedule in my surgery.
Why not just have a colonoscopy and get it over a done with straight away you ask? If you have had a colonoscopy you will understand why! I also get really sick from the prep. I am unsure if its psychological or if my stomach just doesnt agree with it. I have to say picoprep, you son of a bitch, are the most foulest tasting shit! Nothing takes the taste away and leaves a gross coating in my mouth, usually making me vomit, instead of what its supposed to do - come out the other end!
I would also like to share another predicament. How much does hospital parking suck! It costs me around $20 everytime Im there, and I will be going there 3 times this week and at least once next week that i know of…sigh. I know of somewhere that I can park thats free and only a 10 minute or so walk away but I have Crohns thats in a flare and walking lately…lets just say stirs things up and makes me need to find a bathroom like NOW. Ahhhhh going to have to bust out the ol credit card.
Well that was my day, I am going to get up and make myself a hot water bottle and snuggle up for a night in with the hubby.
Muchos Lovos
Holly
P.S check out @TheStomaBagLady on twitter, along with @ThailaSkye, they are the ones with the vlogs that have really helped. (Mum I wish you were better with technology so you could go onto youtube and watch these girls videos so you would feel less freaked out about this all too!) XOX
So today I had my appointment with my gastroenterologist, Prof Tim Florin, who I just think is amaze-balls. He pulled his contacts and got me an appointment with the surgical team this Friday! Otherwise I would be waiting a LONG time (the joys of the public health system) Whilst there, my IBD nurse, Heidi, who I also think is amazing (throwing around this term a lot right now) got me an appointment tomorrow with a dietitian.
Basically the last 4-5 days have been exceptionally worse than my usual worse…if that makes sense? What I am trying to say is I have Crohn's that's flaring…so I always feel like crap, but lately I have been CRAP. So I haven't been eating properly because it hurts or sends me into the bathroom for hours on end, usually in the middle of the night so I am getting no sleep either. The dietitian is going to have a chat with me tomorrow and I will probably get put on these drinks called Fortisip. I have had them before and I didn't mind them to be honest. They are meal replacements so I can just get my on the drinks if I need to and hopefully give my poor belly a rest. The only thing I'm worried about is what if they send me to the loo too! Only time will tell… I shall keep posted about that.
Also on a side note, I haven't cried at all about this operation until today! Heidi (ibd nurse) is just so motherly and caring that I just fricken well up every time I see that woman and have a good old cry. I wasn't bawling my eyes out or anything but I shed a few! Haha.
The last few days I have been investigating the shit out of stoma's and all that jazz and have come across some ABSOLUTELY lovely ladies on twitter. A couple have vlogs (if my mum reads this, that is a video blog :P) so I have seen them talking about living with a stoma, asking peoples questions, and basically just showing everyone that its possible to lead a perfectly normal life after an ileostomy. I am feeling inspired and very positive about it all which is a good thing. I know its not going to be all fun and games and fairies and unicorns and pretty things. Its going to be down right disgusting at times and things probably wont go to plan, but I am a tough nut to crack and it will not get me down.
I can't wait to see the surgeon, I have A LOT of questions to ask… It would be nice to ease my mind a little bit. I'm really hoping to get an idea of when this surgery will be. Unfortunately the MRI department haven't been playing along so nicely (you guys don't get a shout out for being amazing) (they're actually really lovely from previous experience and I take that back)
I have to get an MRI so the surgeons can see what they are dealing with and then can work out the urgency of it all and can schedule me in. The MRI department came back with an appointment time at the end of August. 2 months away!! At the moment I'm struggling to see how I can get through 2 weeks! So my gastro specialist, Tim, is going to have a wee chat with them and see if we can get me in urgently. Its looking like I'm probably not going to have it before the surgical appointment which is a bit dumb, so its unlikely that they can schedule in my surgery.
Why not just have a colonoscopy and get it over a done with straight away you ask? If you have had a colonoscopy you will understand why! I also get really sick from the prep. I am unsure if its psychological or if my stomach just doesnt agree with it. I have to say picoprep, you son of a bitch, are the most foulest tasting shit! Nothing takes the taste away and leaves a gross coating in my mouth, usually making me vomit, instead of what its supposed to do - come out the other end!
I would also like to share another predicament. How much does hospital parking suck! It costs me around $20 everytime Im there, and I will be going there 3 times this week and at least once next week that i know of…sigh. I know of somewhere that I can park thats free and only a 10 minute or so walk away but I have Crohns thats in a flare and walking lately…lets just say stirs things up and makes me need to find a bathroom like NOW. Ahhhhh going to have to bust out the ol credit card.
Well that was my day, I am going to get up and make myself a hot water bottle and snuggle up for a night in with the hubby.
Muchos Lovos
Holly
P.S check out @TheStomaBagLady on twitter, along with @ThailaSkye, they are the ones with the vlogs that have really helped. (Mum I wish you were better with technology so you could go onto youtube and watch these girls videos so you would feel less freaked out about this all too!) XOX
Monday, June 24, 2013
Me, myself and I
Hi there!
I started this blog months ago, wrote my first article..(do you even call them that…post?) Then accidentally deleted it, since I have no idea what I am doing. I got discouraged and didn't go back..until now.
I originally wanted to start a blog as a diary for myself, mainly to document my journey with Crohn's Disease. I also wanted to have it as a way to show friends and family what I am going to so I don't need to blag about my life story over Facebook.
Soooo…where to start..how about i give you a quick run down on myself?
My name is Holly, as you probably figured out by the title of this blog.. I was born in Australia but moved to New Zealand just before I was two with my mum. I went to New Caledonia when I was 15 and while over there, got really sick. Nothing to major, but felt generally unwell, lots of trips to the bathroom..that sort of unpleasant stuff. When I got back to NZ, this kept happening. I was so unwell and lost weight drastically. After lots of doctor and hospital visits and many tests and procedures…they figured out that I have Crohn's Disease. I have been battling it most days since then. I have had good times, don't get me wrong, but mostly its been a struggle. I have had a resection on my intestines and bowel nearly 3 years ago and many many surgeries to treat abscesses which have to be one of the worst things to come with Crohn's. I feel like I have been on every drug trial and medication known on this planet.
I am now 24, and despite having this shit disease (pun absolutely intended) I moved back over to Australia, and I am now married to the most supportive, amazing, loving (the list goes on and on) husband, Will. I am in a job that I love, working as a receptionist in a busy Brisbane backpackers.
This time last week I made the decision along with my doctor to have surgery to get an ileostomy bag, we decided that this was really the only way forward. I can honestly say this decision was followed with a tonne of relief and happiness. I have known for a long time that this day would come, it was just a matter of when, and I am so ready. I have been very unwell and just want to get on with living my life! I have no tears to shed.
The very next day I was at work and I didn't want to tell my boss until I knew more about the operation ( I will have to take around 2 months off to recover) I didn't want to freak them out, but since this is such big and life changing news, its all I could think about. So I manned up, sat down with my manager and told him. He was really supportive and great about it, so that has been a huge relief. From there I have told the majority of my work mates, who are also good friends. I am not ashamed of what I have to have done, so thought screw it I will tell them - and I am glad I did. They have all been really understanding and humoured me which is nice. When the opportunity is there, you can absolutely make poo and fart related jokes. I will not be offended and find it just as funny as you!
I also wanted to tell them so when I go back to work they don't think I am slack if I keep ducking off to the bathroom left right and centre.
So that's pretty much me right now! I go to the hospital tomorrow to have another appointment with my gastro specialist and will know more from there. I still have to be referred by him to the colorectal surgeon who will be doing the operation, and hopefully will know more about when I will be undergoing surgery soon. I will keep you posted.
If anyone ever reads this, thank you for listening to my rambling!
Much love
Holly x
I started this blog months ago, wrote my first article..(do you even call them that…post?) Then accidentally deleted it, since I have no idea what I am doing. I got discouraged and didn't go back..until now.
I originally wanted to start a blog as a diary for myself, mainly to document my journey with Crohn's Disease. I also wanted to have it as a way to show friends and family what I am going to so I don't need to blag about my life story over Facebook.
Soooo…where to start..how about i give you a quick run down on myself?
My name is Holly, as you probably figured out by the title of this blog.. I was born in Australia but moved to New Zealand just before I was two with my mum. I went to New Caledonia when I was 15 and while over there, got really sick. Nothing to major, but felt generally unwell, lots of trips to the bathroom..that sort of unpleasant stuff. When I got back to NZ, this kept happening. I was so unwell and lost weight drastically. After lots of doctor and hospital visits and many tests and procedures…they figured out that I have Crohn's Disease. I have been battling it most days since then. I have had good times, don't get me wrong, but mostly its been a struggle. I have had a resection on my intestines and bowel nearly 3 years ago and many many surgeries to treat abscesses which have to be one of the worst things to come with Crohn's. I feel like I have been on every drug trial and medication known on this planet.
 |
| This is Will and myself :) |
This time last week I made the decision along with my doctor to have surgery to get an ileostomy bag, we decided that this was really the only way forward. I can honestly say this decision was followed with a tonne of relief and happiness. I have known for a long time that this day would come, it was just a matter of when, and I am so ready. I have been very unwell and just want to get on with living my life! I have no tears to shed.
The very next day I was at work and I didn't want to tell my boss until I knew more about the operation ( I will have to take around 2 months off to recover) I didn't want to freak them out, but since this is such big and life changing news, its all I could think about. So I manned up, sat down with my manager and told him. He was really supportive and great about it, so that has been a huge relief. From there I have told the majority of my work mates, who are also good friends. I am not ashamed of what I have to have done, so thought screw it I will tell them - and I am glad I did. They have all been really understanding and humoured me which is nice. When the opportunity is there, you can absolutely make poo and fart related jokes. I will not be offended and find it just as funny as you!
I also wanted to tell them so when I go back to work they don't think I am slack if I keep ducking off to the bathroom left right and centre.
So that's pretty much me right now! I go to the hospital tomorrow to have another appointment with my gastro specialist and will know more from there. I still have to be referred by him to the colorectal surgeon who will be doing the operation, and hopefully will know more about when I will be undergoing surgery soon. I will keep you posted.
If anyone ever reads this, thank you for listening to my rambling!
Much love
Holly x
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