Bowel incontinence after diverticulitis or colitis, is this common?

[Todayishatmyself]

Mortified. Had a recent hospital admission for diverticulitis/colitis. Not sure which exactly as I have diagnosis of both. 3rd hospital admission & was in extreme pain with very high crp levels. Today I was out walking my dog & lost control of my bowels & shat myself. I feel disgusting & humiliated. This has never happened to me before. Is this normal with this type of illness? My gp has been less than helpful & I don’t know where to turn for help.

I have ulcerative colitis and yes it is when you’re in a flare up I’m afraid, it’s why I don’t leave the house when flaring as the urgency means I only have seconds to get to a toilet. When I know I have to go out though, I wake up hours early to make sure I’ve gone to the loo several times, I don’t eat or drink anything at all that day or at least until I’m back home (it makes it worse) and I have very light meals the day before as well which helps; I also take loperamide / Imodium which buys me some toilet free hours. When I’m in a flare, I also never go anywhere without a change of clothes, wipes etc just in case but usually the loperamide does the trick. If you google it, a lot of people with these conditions have toilet anxiety. I’d recommend getting a radar key too so you can access a disabled toilet.

Hopefully once they find the right medication for you though, you’ll go into remission and won’t have this problem.

I’m honestly surprised your GP is managing this though, what happened while you were in hospital? Aren’t you under gastro there? Usually they don’t let you leave until your condition is under control / you’re on a course of treatment.

I just wanted to say I'm really sorry you're experiencing this. I don't have either condition so cannot comment, but I do have a range of other disabilities and medical conditions and adapting to a 'new normal' like this is never easy.

Please don't feel terrible about it, this sort of thing happens with bowel disease - you are not the only one and definitely not disgusting!

I was promised a follow up appointment but ended up being re-admitted to hospital as the pain was unbearable & my crp levels were alarmingly high so this crossed over with the follow up appointment & it never happened. I’m going to contact my GP again tomorrow to see what follow up is planned as I now have anxiety over the whole situation.

You need a gastro referral OP, this isn’t a condition your GP should be overseeing so don’t let them fob you off; do ask your GP about a prescription for loperamide though (generic Imodium) as it’ll help you with getting out and about in the meantime without any accidents.

I am sorry you’re going through this though, it’s definitely a humiliating condition but fingers crossed they find you the right medication quickly.

If you have a diagnosis of colitis, you should have access to an IBD nurse for advice/quick access to Gastro.

This is something the GP would need managed by gastro rather than picking a treatment themselves.

I have a Gp appointment tomorrow to discuss next steps. I’m hoping for a referral back to Gastro. Feeling awful which makes me think the flare up hasn’t completely resolved.

My ds2 has Ulcerative Colitis. He wasn't diagnosed until he was 21 but probably had it before that... unfortunately he shat himself several times before he was actually diagnosed... awful for him, and we had to really fight for a colonsocopy which diagnosed him instantly. (he has autism and docs just really dismissed his symptoms) SO much better on UC meds but the odd flare up can cause near emergencies still.
I have divertical disease and swing between constipation and OMG I need the loo NOW. I was caught out (dog walking...thankfully in a field in the niddle of no-where) once... it was a flare up.