Ostomy Leak

Last week, my ostomy leaked for the first time in a while. This really threw me because I have just started to really feel comfortable with it. I have had to re-adjust so much in order to feel confident in my body. It is a terrible feeling to not have control over your bowel movements, a basic bodily function most people don’t even think twice about.

Ulcerative colitis made me think about this constantly. And then when I had a Jpouch it was different in many ways, but the bathroom was still a constant source of anxiety. Micromanaging food and drinks and pretty much everything that went into my body caused nonstop exhaustion and energy. In addition, I also had an ileostomy for three years as a teenager which I had an enormous amount of issues with. It leaked constantly – sometimes I could understand why but most of the time it was completely random. And then with the kock pouch (continent ileostomy), I stopped eating during the day because I wanted to just be normal and not run my life around the bathroom. It did consume my thoughts anyway since I was so worried that I would do or eat something “wrong “ that could potentially cause the valve to slip, thus forcing me to need to undergo another surgery and possibly leave me with (at that time) the worst alternative imaginable – a traditional ileostomy.

Needless to say, I have had to go through a lot in terms of trusting my body, only to get knocked down, trusting again, then having my body operate differently, adjust to it, trust it, have it fail me, get back up, fall, re-adjust again, etc.

pace - trust yourself sign

So just when I was settling into things a bit, this leak wasn’t sitting well with me but luckily it happened when I was home so I could just change it and carry on with my day. It did make me nervous though. It made me more afraid to be away from home and eat/drink. I have been doing better with that so it was just unsettling.

With my first ileostomy, anytime I ate salads or vegetables the bag would leak. It made it thick under the flange which caused it to leak. I tried this so many times since my doctors and parents would always tell me that it was impossible since no one else had this problem.

Going into this ostomy surgery, I did it very cautiously. I already had a tremendous amount of experience from being an ostomate for three years and also having a continent ileostomy for six. I was done with trial and error and was hell bent on sticking to my guns in terms of food/drinks, regardless of what anyone else told me. I always despised hearing “well how come so and so can do this without a problem?” So as much as I hate not eating vegetables, salad, fruit, sushi, rice, my favorite Progresso vegetable soup I used to eat all of the time, I couldn’t and wouldn’t take the risk of something happening.

Not this time.

But, last week I felt adventurous and had some really cooked cauliflower since out of all the veggies I know, I look at it as the least “threatening.” {what is wrong with my life that I view veggies as a threat and seem like an adventurous soul by consuming two pieces of it? haha}


The next day, I felt like things were different with the bag. It seemed like something was trying to seep through the flange but since it wasn’t my time to change it, I just ignored it.

A few hours later, it leaked.

I am okay with things as long as there is a reason for it. The bag has been okay (knock on wood) since then so I am going to just chalk that most recent leak up to the cauliflower.

Everyone’s body is different. Everyone’s intestines are different. Everyone’s appliance fits differently on their skin. Everyone’s digestive ability varies. There is no one size fits all for Crohns disease, ulcerative colitis or ostomy patients. It is great to get advice from others but you need to do your own trial and error with foods to find out what works best for you. I do know now that my initial instincts when I was a teenager were right about vegetables, and if I had to take a wild guess – fruits and salad (especially) most likely did cause a lot of issues for me. I wanted to be like any other girl my age and I tried to listen to what others were telling me despite what I believed to be the truth.

At the end of the day, would you rather be “normal” and pay for it, or try to find alternatives so your life can be as easy as possible?

  • Jodi

    Sorry about the set back. However, it seems you have handled it very well and are moving on. It is amazing how different your whole perspective is these days. Stay strong and keep up the good work. As always, keep listening to your ‘gut”. :)

  • Ashley

    i have a colostomy and when my stool gets thick it packs under the wafer causing a “leak.” the only positive thing is that with hard stool (not uncommon with a colostomy), the stool will stay confined in the wafer so you have time to get to a bathroom and it wont seep through the wafer and on to your clothes. if eating veggies causes your stool to be thick then it makes sense that you would have a leak.

  • http://livingsickdotcom.wordpress.com CrohnsDiaries

    I try to be normal and I do pay for it. But when I eat something good, I just know that I’m going to have a hard time. I actually end up laughing at myself, even though I’m in pain. Sometimes I just gotta have a salad, and so be it if I can’t sleep that night. I just remind myself that the salad tasted really, really good. :)