Hey everyone,
I've just got home 2 days ago from a long 2 week stay in Hospital. My Ulcerative Colitis had another go at me. I'd been good for just over 5 months & everything was ok, but then out of nowhere there I was again, bloodied bowel movements 4-5 times a day with pain. Great.
I managed it for about 2 weeks however & I felt like I was getting it under control. I'd spoken to my specialist nurse over the phone & she'd reviewed me. I got prescribed a short course of prednisolone steroids & some Colifoam Enemas. I thought I was perhaps going to nip this flare up in the bud but unfortunatley my insides really do hate me & I got worse. I had EXREME pains when going to the toilet one day. It was so bad that I felt as though I would either throw up or pass out. And I was going anywhere from 5-10 times a day.
So i got admitted to hospital & got the works. An iv of steroids and a mess of blood tests with every doctor and nurse rubbing my tummy like I was a large cat with indigestion.
What was a real bast*rd this time though was that I was found to have a bug in my colon called C.Diff. So I was put on an isolation ward. Admittedly that was pretty cool since it was really really quiet compared to the regular gastro ward. I had my own room & bathroom with my own shower & a TV. The downside was that I was not allowed to leave the room, so I had 13 days in one room. It was kind of like a combination of a hotel and prison. Thankfully that bug cleared with some anti-biotics.
Anyway, I got given a choice after a few days. I had to decide wether to have a go of the next and last stage of treatment called Infliximab, or surgery to remove my large intsetine. I was landed with this choice coz my Colitis is so aggressive that the lower end treatments now do nothing for me & I've only had it for 2 years.
I honestly considered the surgery for about 4 days. I just wanted the pains and the diaherra to end and the bleeding and the embarassment & the anxiety. The surgery would be an end to it all. It would end my disease. If I didn't have a large intestine I wouldnt have Colitis, simple. The trade off would be an ileostomy bag for life. I know all about those dont get me wrong, I'm not scared of the idea since it would be an endgame result for me.
However after mulitple chats with surgeons and doctors I made my mind up to have a go at the last option of medication, Inflixmab infusions. I wasn't overly fond of what I was told. Its pretty heavy duty stuff that lowers your immune system so that your insides dont get inflamed, therefore Colitis is eased and you fell better hopefully for a long while. But it can make you susceptible to infections & at a slightly higher risk of Lymphoma & Skin Cancer (bloody hell) Also if your body rejects it you could have ruined your immune system for no reason.
So I had my first infusion about 6 days ago. It was painless & it didnt make me feel ill or anything. And thankfully I didnt have an allergic reaction. It took about 2 hours to finish it & the whole time I had a nice nurse sit by me taking blood pressure every 15 minutes in case I started rejecting it. That made me a little nervous how volitle it could possibly be, but it was fine in the end.
Its been almost a week now since I had it & I've gotten down to 3-5 bowel movements a day with less bleeding, sometimes none. The consistency is getting better slowly & the pains are subsiding too. So thankfully the infliximab is actually working. That was what swayed my mind about choosing that option, that if it DID work for me then I would see a difference in a few days. After all the other treatments I've been on that take weeks and weeks to build up in your system, that sounded good. On top of that I thought that I might as well have a go at the treatment and if it doesnt work, then surgery will be the only thing left to do & at that point I would be ok with it, as it wouldnt be my choice.
I'm optimistic about the infliximab. I've got another infusion next wednesday & then another one in 6 weeks. ...And then another in 8 weeks I think. The only thing thats getting to me right now is that I have to endure yet another 9 weeks of Prednisolone steroids. They give me the worst stomach aches, like huge bands of trapped wind around my middle its horrible. And at the same time they make me hungrier than normal. Its a viscious cycle.
Every morning I have a cocktail of medication. Currently I'm taking 8 prednisolone steroids, 8 Pentasa tablets (they are huge and awkward to swallow), 1 Azathioprine & 2 Ad-Cal chewy tablets (like chewing chalk made from a skeleton) Also until my flare up truly calms down I'm giving myself a Colifoam enema before bed. Those are actually not that bad. They keep me off the toilet throughout the night, which is wonderful. Its just not great to be sticking something up my bum every night, but I just think, hey at least its not a colonoscopy!
I suppose I would recommend Infliximab to people who might need it for Crohns and Colitis. I know that people with Arthritis sometimes go on it too, coz it helps out your whole body with inflammation. For once I'm choosing to be positive about my health. I'm aware that I could still start to reject the infliximab even a couple of weeks after recieving it and I'm aware of the the fact that I am now more sensitive to infections. I'll probably get every cold and sniffle going when summer goes away. I'm simply trying not to think about any of that though. I'll be ok with the odd illness here and there if in return I get to have 1 or 2 solid yule-log poos every day.
If anyone else is on Infliximab for whatever reason, feel free to share your thoughts & any stories if you like. Advice or whatever is welcome too.
stay cool,
Andy (Y)