www.incontinentsupport.org

Earlier today I had my six month wellness visit with my family physician. I have read several accounts on sites dedicated to the support of folks whose GI systems were paralyzed. They all complained of intense abdominal pain, vomiting, and life-threatening weight loss. However, nobody mentioned fecal incontinence. When I explained the difficulty I have managing my diet and medications, and that when I get things wrong, I invariably have a bowel accident, her response was that it was to be expected and is common among gastroparetics. Is this an illustration of the taboo we all face? Those are all reputable sites; however, the taboo seems to be working at the patients' level rather than at the medical level.

I have a different condition to you and at the more severe level incontinence is not uncommon. However some drs have said this isn't a symptom of my condition and on one occasion tried to rule out my condition because I have incontinence and muscle spasms - two common symptoms in very severe me. Another Dr acknowledged it. What surprised me was that I found in circles where there is a mixture of severity people don't mention it very often where as on the group for severe sufferers people spoke about incontinence management a lot.

It's really interesting how people shy away from these topics. Do you know the mechanism that causes fecal incontinence in gastroparesis? Is it to do with needing stimulants to control the bowel? The rectum and anus being weak, or the blockages and pseudo blockages + constipation that occurs causing loose stools around the impacted stool?

My own bowel management is quite dependent on having someone to assist me as required. I anticipate some potential issues when out and about and unable to access a toilet with a hoist. I've also had issues when I've tried certain laxatives. I find it near impossible to get the texture of my stool adequate. Currently it's either too soft or I can't go. No in between.

Tangerine,

My heart goes out to you. I am much more mobile than you are, which gives me a nearly unfair advantage. Although a doctor might disagree with me, here goes. The GP diet is low-residue or no residue. This gives me a colon blockage; diarrhea develops behind the blockage, seeps past it, and I soil myself. I manage this with a stool softener which I take with every restricted residue meal. However, I can still develop blockages and/or diarrhea, for reasons that I do not understand. At the instruction of my gastroenterologist, I also use laxatives, suppositories, and enemas. Laxatives at problematic, because they chain me to a toilet for days at a time, making me unable to fulfill my family and social responsibilities. Suppositories work quickly, but can cause painful colon/rectal cramps and spasms. I prefer enemas, because they work quickly and are not painful. However, an enema can be still leaking two to three hours later, once again making adequate protection necessary.

Yeah it is a taboo. Unfortunately. Society in general has a very negative take on adults wearing/using diapers.

I've meat people on the street who literally lost their minds when they realized I was diapered. No thought at all to my needing them, just fear and irrationality like diapers were somehow threatening their very life. (Not an understatement either).

I've also met urologists who though it was their mission in life to get me out of diapers no matter the cost, even if that meant an extremely invasive surgery that even if successful would have made dealing with this much, much worse.

It's odd and crazy the misplaced and irrational fear, and outright hatred, a lot of people have for adult diapers in general. And that's for just those of us who truly physically need them, heaven forbid you mention everyone else too.

That was the mechanism I was thinking of Patrick. Sounds tricky. I actually find my diet works best if I avoid grains and anything high in carbs E.g potatoes, fruit, honey. I eat a lot of veg and that does work for me though I do suffer with constipation. At best without movicol my stools are incredibly hard, or I just can't go at all. I rely on the stool coming down quite far before going. Sometimes i get cramps and know I need to go then though. Usually a little while after a meal but just occasionally. Happened today and I don't know if it was a food trigger or just the fact I hadn't been yesterday or properly in a few days so had a bit or a back up. I digress though as it doesn't relate to gastroparesis and is as you say an unsuitable diet for you.

I can't stand the cramping with suppositories. I will likely try them again when I am no longer entirely bedbound just so that I can be more sure of not needing a bowel movement whilst out of the flat. I've never tried an enema.

Honestly I'd quite like to be off the movicol as it's not good for depleting minerals and stuff. I take high dose vitamin c, magnesium and use flaxseed, dried fig and lots of vegetable fibre though and it still doesn't move things along naturally!

Can't even imagine what you guys are going through. Bladder issues are trouble enough.......