Crohns / ulcerative colitis sufferers

I think the cycle of steroids really messed my ability to fight it off. I was on a constant cycle of them from the day I was diagnosed until I decided to never take them again after 4 years. I tried azathioprine but that made me feel completely awful. I decided to stop all meds and see how that went as I was never as bad before diagnosis as I was whilst taking lots of meds.

It's been 5 years since stopping them, the first year was awful but it got much better and now I hardly suffer at all.its lovely not getting colds every 2 months due to a crap immune system and I have enough energy these days to live a normal life.
 
I've got UC and consider myself very lucky. I very rarely have any bleeding.. just some cramping/spasming/pain.. and the worst of it.. constant fatigue. Would love there to be something to stop all this auto immune nonsense but the skeptic in me thinks this won't go anywhere. I've had it for nearly 3 years and my first visit to an actual Gastro (not a registrar!) had me ask them if I will ever be cured of this.. her response.. 'there will not be a cure for crohns or colitis in your lifetime' - hmph!
 
UC suffer here. Had it about 4 years confirmed and had many flare ups in that period although haven't had one for a while. I would like to say I'm past it now but I know it doesn't work that way so just taking Azathioprine and Mesalazine(pentasa). Had no bleeding or cramps but I've got to the stage that I cant remember what I felt like before taking the meds if that makes sense. It would be lovely to come off them and see how I'm affected.

I'm a long distance runner (now at least) and actively trying to improve my health through running and so far so good. When I first started running the sudden pain that made me feel like I needed to go would be horrible but I would say that this stage is very rare now.

I hope there is a cue or at least a link found so we can fully understand what causes the issue. Trying to explain the issue to a non suffer or someone that hasn't seen the affects can be horrible as most don't understand sadly. Worse still there doesn't seem to be a link to how fit a person can be or what they eat every suffer is different or shares the same type I guess.
 
I have had a JPouch for 11 years now, rarely bothers me. Had severe UC and was on ciclosporin and an experimental drug that did not help. When they did a camera check part of the bowel was more or less nearly dead, so within 30 minutes I was reeled in for emergency 3 step surgery as the risk of perforation was very high.

Was a dark few months but has shaped my life in a good way. I work in a stressful etc job fine.
 
Amazing how many on here have it, I have UC but only a pretty mild case I think.

As long as I take my 3 Asacol a day I'm actually fairly regular (twice a day) and decent consistency, except after long exercise, a good bout of booze or particularly rich/large amounts of food and even then I return to normal after a day.

Just pray I'm lucky enough that it stays that way and gets no worse. Hope for everyone else with it worse than me that this research comes to something
 
I've had a jpouch for 16 years after suffering from UC, I'm also a Firefighter so things can get interesting getting called to emergencies at a moments notice and then out for hours on end.

I now suffer from flare ups of Pouchitis.

Also approximately 5% of people with UC get Primary sclerosing cholangitis, so with my luck I got that as well.
 
For the past few years I've pretty much only taken Mebeverine, and only when I get flare ups, it drastically reduces the swelling without any bad side effects that many other drugs give you.

vsl3 prebiotic on a daily basis seems to help too.
 
maccapacca said:
Well I've just been given an appointment for Monday for a camera survey (flexi sig), I'll post the video.

Lets hope they don't run out of lube :eek:
Click to expand...

Lubing me up for my last flexi was the most uncomfortable part of it. They said inflammation was almost gone but looked very sore 5-8cm in. Yeah about a fingers worth.
 
Back from the flexi sig, the poor guy's job all day as it's so automated he's just wheeled patients with no underwear to lube up and insert, he deserves every penny :p

Anyway had massive anxiety that something was wrong and maybe more sinister but I've got more inflammation for quite a large part of my descending colon. Nothing nasty there thank bejusus. Several biopsies taken which felt like someone plucking my insides and a massive fart once he was finished.

I feel very violated and now on the couch watching friends with nana's blanket :p
 
Did you get to watch it on the big TV... ?

I asked once if I could see the camera. I said "I thought it would be bigger" the Doctor grinned and said "We can extend it if you like" :)
 
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