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
Thursday, July 25, 2013
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! |
 |
| 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.
 |
| 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
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