My mom does. She has a very tiny rectal opening and it stayed inflamed most of the time - sometimes it would abscess and drain. She was going to the bathroom (to poop) in excess of 15-30 times a day and it only being a small amount coming out each time with extreme pain and burning. Her stool would have to become like water to come out and they were unable to do a good colonoscopy because of the narrowing going in. One time they were able to use something they use on babies and actually do it. She also had a mass of fistulas in her intestines. They removed this mass and did a colostomy. At first they thought they could reconnect things and the colostomy be temporary. But due to the rectal issues they were afraid things would bust if they reversed the colostomy. So, she has had a permanent colostomy for about 3 months now and is doing really good.
I have crohn's colitis too - affecting all of my bowel and especially bad in my rectum and anus. it has wreaked havoc and now I have a fissure, fistula and abscess that refuse to go away despite multiple surgeries. :(
I didn't realise just how bad my case was because I was being 'treated' by a negligent GI. ONly on meetin my IBD GI was i told just how bad things really are.
Hi crazyharry, that really sucks. Having crohn’s in the rectum is embarrassing and so painful. I have run out of painkillers and am set to see my colo surgeon tomorrow, not knowing how I am going to get through today at work!
You say you’ve had an abscess for 3 years….. have you ever been offered setons or a drain for it? I currently have a mushroom drain in mine after the setons didn’t work well enough. But it is still draining nearly a month on, so I see the surgeon tomorrow and hopefully he can give me some answers because it is getting increasingly painful again, and fast L
I wish it were only rectal CD! I have tonnes of skin tags, fistulas abscess and fissures AND then crohn’n in my tummy as well! I really can’t win L how depressing
I was initially told after my first colonoscopy “my crohn’s is everywhere – the whole bowel is ulcerated and scarred”
Colifoam rectal enemas are great – I had no pain from them and they helped with my symptoms, but by that stage I already had an abscess and fistula, so earlier intervention would have been better!! They’re really easy to use too – apart from the whole minute of shaking the bottle each time! I was so sick once that I didn’t have the energy to shake the bottle and had to give it a miss.
So they’ve done a colonoscopy on you but they can’t tell if it’s in your intestines? That’s kind of weird! Surely they could have seen it? It’s so confusing – I had a terrible GI when I was diagnosed and he gave me little/no info on where the disease was located (instead saying it was ‘everywhere’) – so I had no idea I had to be wary of my rectum as well as my intestines. I lost a lot of blood and had a lot of pain, but if I’d known earlier I could have looked after my bottom end a bit better (wipes, creams etc). Hopefully you’ve got to it earlier than me and don’t develop abscesses – those things are evil!
Yeah I’d be interested in how it affects the nose too!
I’ve had a crazy outbreak of mouth ulcers once (I counted 27 at once!) but that happened very randomly and went away after a week.
Sometimes I think I’d love to watch up colonoscopy video, so I could really ‘see’ this disease. Gross, I know – but I think it would be interesting.
Wow those enemas are expensive!!! Mine were $30 AUS a bottle – which was expensive enough for me on my salary! Is that $145 for one bottle or two (mine came in pairs)? Do you get any of that money back?
Yes and you don’t get stuck with the prednisone side-effects which is brilliant!!