I'M BAAAAACK!!!

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