Hey everyone. My name's Andy. I'm 22. I have Ulcerative Colitis. I've officially had it now for 4 years but I first started having symptoms in 2009 so really I'd say I've had UC for just over 5 years.
In short, I can't live with it anymore. It's ruining my life. I seem to have annual flare-ups, each one being worse than the last. So I've had 5 proper flare-ups. I'm not accounting for the odd times I've had accidents or just "bad days". If I'm counting those, the number of flare-ups would be in the hundreds.
The last flare-up I had lasted from end of August 2013 until February 2014.
My point is that I know that I WANT an ileostomy. I want to be rid of my Ulcerative Colitis for good. It's affecting every part of my life. I can't leave the house in full confidence anymore. I hate how I automatically keep a mental note of where the nearest toilets are wherever I go. I dread long car/bus journeys. I am nervous about going to new places. I'm really getting tired of taking medication every day. Over the last few years, my UC has affected my social life, sometimes severely. I'm struggling to look for a job effectively. It even ended up causing the end of a very good relationship I had in 2012. I can't relax anymore. Even though my symptoms have calmed down considerably since February, I'm not 100%. I can't shake the fear of another flare-up. My UC has taken me to the very depths of depression, after my last flare-up I had 10 weeks of therapy. I hate my bowels. I want to be me again.
I last saw my doctor in the beginning of March this year. He said he wanted to see me again in 3 months' time, so I'm hoping he'll be in touch about another appointment very soon. When I saw him last, we discussed medication mostly. He thought that I could still carry on with my Mezavant XL and see how I go OR I could have bumped up to Azathioprine(?) I think that's right. All I really remember about that was the HUGE range of side effects he listed off. It frightened me, so I decided to see how I did on my Mezavant XL. I've been okay, for the last couple of months I've been great actually. But lately, my insides have been a bit touchy. It's thrown me off completely. I'm not experiencing any pain or bleeding, just an increase in bowel movements and quite a bit of tenesmus (you know, feeling the need to have a poo but there's nothing)
Even so, I know that I WILL have another flare-up sooner or later. And it seems that there's nothing I can do to stop that. I mean I eat well, I don't drink, I don't smoke, I keep as active as I can, yet I suffer annually from crippling flare-ups. :'( I'm not living the life I SHOULD be living at the age of 22. I truly believe that my UC has robbed me of some of the best years of my life. It's ruining what I have left of them.
I was given numerous booklets and information packs about IBD, Crohn's, and Colitis when I was in Hospital, (it made for some kickass bedtime reading *sarcasm). I have read up ALL about ostomies and stomas, and the life people lead with them, so I know exactly what I would be getting myself into. I have watched some videos from a channel on YouTube called OstomyLifestyleFilms, and they have inspired me to get the ball rolling for myself. I just know that my quality of life will be improved so much, I will be able to be me again. I know it would be life-changing, but being told I had Colitis was life-changing. And I know that I would have the ileostomy forever, but that doesn't scare me. I was already told once that I would have Ulcerative Colitis forever.
I had a phone call with my IBD specialist nurse yesterday morning. She understood where I was coming from. She told me that if I am well right now then the doctors would not suggest something like surgery to me, but if I was adamant about it then something could get sorted for me. I know that a lot of people don't have a say in getting an ostomy, they might need it because of an emergency or because of truly failing health, but I'd rather not wait for either of those situations.
I know this site is full of awesome people who have/have had all kinds of bowel trouble, a lot of folks have ostomies. I really just want to know if anyone has ever gone and asked for surgery like I want to do. If so, how did you go about approaching your doctor(s)? Does anyone have any tips for me in what I could say to perhaps persuade my doctor to get me sorted out for an ileostomy?
I would really appreciate any advice, someone please get back to me,
Thanks a lot,