Crohns and incontinence - anyone else in a similar situation?

[crohnslyfe]

Hi everyone,

Long time lurker, first time poster here. Was diagnosed with Crohns colitis 15 years ago at 16, went through a period of remission after surgery for a massive perianal abscess at that time and flared up pretty badly again about 10 years ago. Have been flaring on and off ever since. Over the last year things have been more active with 3 perianal fistulas (setons placed and recently removed) and surgery to drain 2 painful perianal abscesses. Known anal canal stenosis. I'm currently on infliximab and 6mp.

I flared up pretty badly for about a month before my last infliximab infusion and the anal canal stenosis got pretty bad (sorry if this is TMI!), to the point where I couldn't pass gas let alone anything else. After the infusion things calmed down a bit and I'm able to pass gas and stools but things are different than they were before... With the stenosis I've had trouble passing stool for a while - like it's a lot of effort to get anything out, painful and it's ribbon thin. Since this last flare though I'm struggling with incontinence as well. So if the stool is firmish its hard to pass... If it's any softer (like pudding texture) I literally feel like I don't have any control - it just comes out! I've been having accidents every day and its affecting my confidence to leave the house. I have had the occasional accident before, but nothing like this so I'm pretty worried.

Has anyone else been in a similar situation? What are your stories about incontinence and was there anything that you did that helped?

 

[ronroush7]

Welcome. I wonder if the Remicade is losing it's effectiveness. Talk to your doctor and tell him what is going on.

 

[crohnslyfe]

Thanks for the reply Ron. I've been referred to the surgeon and will hopefully get an appointment soon!

 

[Samboi]

I don’t think it’s that uncommon to experience extreme urgency and incontinence. It is most likely a sign your treatment is not doing the job, or your colon and friends (more like enemies most of the time!) are ready to give up the ghost.
I have a potty in the back of my car. That gives me great peace of mind. And I also have no qualms about wearing a nappy. After I’ve exhausted the drugs left to manage my symptoms, it’s see you later colon. And that day is drawing close.

 

[crohnslyfe]

Hi Samboi,

I've been dealing with extreme urgency for the last few years - the incontinence is relatively new! I used to be able to just make it to a toilet but now it comes out really quickly and I don't really have a chance. Started with infliximab in January this year after failing humira and all the other standard meds (aziathoprine, asacol, etc). Have been on prednisone in the past but with my perianal disease the Drs haven't wanted me to go back onto it. The infliximab worked great for the first couple of infusions and I felt amazing for the first time in a long time. A few weeks after the third infusion things started to go down hill again. Had the fourth infusion early and likely will be having the fifth infusion early as well. Having said that the infliximab is doing really well for my fistulas and the discharge there is definitely decreasing!

At this stage I'm thinking it might be a bit of both - treatment not doing the job and especially the anal stenosis getting worse. Its hard to tell if the stenosis is inflammation, scarring or a bit of both... during my colonoscopy last year the endoscopist said he thought I would have to get a stoma within the next few years because the scarring was pretty bad. TBH if I could have the option I'd definitely get the stoma and be done with it! Want my life back. Been living with crohns for 15 years and its never really held me back -backpacked around Europe and Asia for 5 months, used to go for multi day hikes in the bush and just be really active. Now on a bad day I can't even walk to the shop at the end of the road without having an for an accident! And can only walk 15/20 mins max before I need the toilet on an average day. My quality of life has really gone down. Hoping that the surgeon brings up an ileostomy as an option, or I might bring it up with him. Still waiting for an appointment.

Sounds like we are in a similar situation. I don't have a car so no potty but can see how that could give you peace of mind. I don't wear a nappy but do wear sanitary pads every time I go out - more often than not I need them and it makes going out easier. How long have you been having problems?

 

[Samboi]

I’ve had the urgency issue for about 18 months. And “urgency” doesn’t quite capture the poonami deluge that cannot be contained. Vedoluzimab did nothing for the rectal inflammation. The only thing that has ever got it under control is Pred - and that is never a long term solution. I’m trialing CBD supps to try and address the rectal inflammation. I’ll let you know if this works.
I had a stoma a few years back. I’m desperate not to get a permanent one - but I am reconciled to this inevitable reality. I said they could take my bum when it is ruined and no longer works. And frankly - that’s pretty close. However until it’s totally wrecked - I’m hanging on to it.

 

[Bufford]

I had a similar past with dealing with rectal problems due to active fistulas and infections until I had the big abscess that left me with no other option but a stoma that ended up being permanent.
Living with a stoma (now going on almost 20 years) was a large adjustment to life, and my quality of life was a huge improvement when compared to the mess and pain prior to surgery. There is life after stoma surgery

 

[Samboi]

Oh yes - I’m preparing for that now. It’s inevitable.
And by the time it happens, it will most likely be a welcome relief.

 

[Anna's Bandit]

I've been wearing Poise Pads for a long time just in case I have leaks ( watery bowel movements) or I cannot make it to the bathroom on time. It gives me a bit more confidence wearing the pad. But for big accidents, well, it's just gonna happen ?