Dealing With Incontinence and IBD

By Sahara Fleetwood-Beresford

3 min read

Accidents. Incontinence. Call it what you will. To be in your 20s and experiencing fecal incontinence is soul-destroying. I’m not saying it’s any less soul-destroying later or earlier in life. It’s just that my personal experience did have me crying, "How can this be my life in my 20s?"

Fecal incontience with Crohn's or UC

Fortunately for me, it was mainly nighttime incontinence. Doesn’t make me sound that fortunate, does it? But, it is easier to deal with at home than it is away from it. There have been periods of my life in which I have had to leave the house with a bag full of emergency underwear, leggings, wipes, etc. I wouldn’t dare leave otherwise, because, what if...? In reality, sh***ing my pants whilst out and about was a rare occurrence, but it’s better to be safe than sorry!

Staying away from home also seems impossible when you know there’s a risk of pooping in the bed! My first stoma was a nightmare, and I often woke up to a bag explosion. The cycle of ostomy leaks, burnt skin, and bags not adhering properly was literally my life for 2 years. Then came the nighttime incontinence with my j-pouch.

Nightime accidents with a j-pouch

It started after I had my j-pouch connected back up. I’d had surgery to remove an abscess and twisted intestine, and my j-pouch was torn during the operation. It was mended and left to heal, before being connected back up. I had an ileostomy for just 5 months, and then it was reconnected again. I was surprised when I realised that this was a completely different experience from when I’d had it connected the first time.

When I had my j-pouch connected the first time, I was anticipating the worst. I’d read what I could about it, and expected the initial few months to be full of the frequent and urgent need to empty my pouch. Possibly even some incontinence. But, nothing. It worked really well, straight away! I didn’t get that much warning, but the time I could hold it increased pretty quickly.

So, imagine my surprise when I had it connected for the second time and had only a few seconds warning. I didn’t reach the bathroom on multiple occasions in the early days following surgery. Things did improve, but the nighttime incontinence remained.

Coping with incontinence in bed

I tried sleeping on an incontinence pad, but whatever they were made from made me sweaty. So I started sleeping on a towel. That meant that I didn’t have to get up and change the bed in the middle of the night, as well as having to get up and clean myself up. I just chucked my messed underwear and towel in the washing machine and put a new one on the bed.

I couldn’t believe this was my life. I didn’t want my partner to stay over. He knew about my issue and said he didn’t care. He’d happily help me in the night if needed, but I didn’t want that.

Can you help, doc?

I was referred for something called biofeedback, but it wasn’t my local hospital so it meant relying on someone to be able to take me to the appointments because I don’t drive. I arrived at the first appointment full of hope. I was told to go home, complete a food diary, and come back next month. I explained that I’d had IBD for many years and if there was a food to be identified, I’d have done so already. I was so annoyed. I’d made my dad drive me for an hour, for a 5-minute appointment... I was supposed to get an hour! She gave me a sheet with a few pelvic floor exercises on it, because I asked for them, and sent me on my way.

This is how non-adherence happens. I was so disappointed and angry, I didn’t go again. I felt like the doctor wasn’t going to listen to me, and if she wasn’t going to listen, I wasn’t going make the effort and disrupt others' lives to take me all that way.

Returning to life with a stoma has had many advantages. Not waking up in my own feces is definitely one of them! Bag leaks are very rare for me with this stoma. I’ve shared this today for one simple reason. So that anyone going through something similar at least knows they’re not alone.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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ejwithj-pouch Member
Thank you for sharing, Sahara. There's always so much to contend with, so much to try to balance. I have had that exact same experience: health practitioner #23 asking me to keep a food journal and a bowel log on appointment #1, and then resenting my reply, " How about if I just email you one or all of the last 22 food journals and/or 40 bowel logs that I have completed over the course of the past 15 years, and today we get started on whatever treatment program you feel might have even a 10% chance of triggering improvement." For the possible benefit of others reading this, as much energy as it takes to face disappointment after disappointment, I too have been referred for biofeedback 3 different times over the course of 4 years. The first practitioner didn't have a clue what to do with me - she had never had a J-pouch patient before and was frightened to try anything. The 2nd had 35 years as a PT, 17 of those years specializing in pelvic floor PT. We did the biofeedback, but when I showed no improvement after a few sessions, she decided I had been misdiagnosed and dismissed me. Almost 4 years later, I received the exact same diagnosis, was referred for biofeedback again, could not find ANY pelvic floor PT willing to take me on, and turned in desperation to my naturopath. She referred me to a pelvic floor PT in a tiny hospital, a young woman who had been practicing only 4 years. This provider has been PHENOMENAL. She too had never had a J-pouch patient before, didn't even know what a J-pouch was, but instead of giving up before starting, she has worked her tail off to educate herself, collaborate with my doctors (no one has done that before - I mean, NO ONE - even when I have begged them to), and keeps trying new things. I've had 19 sessions with her so far. There have been no miraculous moments BUT I have made improvement, both in pain levels and in function, and this is the first time I can say that after 16 years of IBD, and more treatment programs than I could possibly count. It is so important how we all support each other in this community. Hope this helps someone!
1. Sahara Fleetwood-Beresford Moderator & Contributor
 <inline-mention username="ejwithj-pouch" user-id="2241047"/> appreciate you sharing. I think I read similar on a post previously and hailed the commitment of this final PT! 100% with you about supporting each other! - Sahara (team member)
2. Lynne.Smith Moderator
 <inline-mention username="ejwithj-pouch" user-id="2241047"/> thank you for sharing your story and giving others hope to keep on trying even when things seem hopeless. As hard as it may be to accept sometimes the first doctors we encounter may not be a good fit but we should keep on trying. So happy you are seeing improvements in your pain level & function. Wishing you many more pain-free days.~ Fondly Lynne S. (IBD team member)