u/Lumpy-Anteater-4364

Hi everyone.
I'm wondering if any ileostomates have had similar experiences...
I'm about a year in with my ileostomy. I originally had an appendicostomy due to slow transit in the colon and had to switch to an ileostomy as a result of cancer.

The first 5-6 months were great and I ate like there was no tomorrow. Little by little my stoma started slowing down and the symptoms of bloating and early fullness returned and now I have long periods where I'm not able to eat much until something suddenly lets go and my stoma produces large amounts of output for a few days. While this is happening I'm also able to eat somewhat normally until everything slows to a crawl and I'm back to eating very little again. This has been going on for 6-7 months now. No pain, just feeling very full and having very little output from my stoma. 1/2 glass of water can make me full for hours.
I do better with bland, easily digested food as opposed to high fat or high fiber foods which feels like I've swallowed a brick.
I've had an upper endoscopy, MRI and CT to look for obstructions or if the cancer has decided to come back but everyting looks fine. Meanwhile my stomach or my intestine refuse to play along.

I'm seeing my surgeon tomorrow. Any tips on what to ask for in case he says every test looks fine, there's nothing wrong`?

I'm going in for a MRI and have been told that I will need to fast for 13 hours before the scan(from midnight until 1 pm the following day) to ensure my bowel is as empty as can be. The only thing allowed is some water with regular medications(I'm not on any).

I'm a bit worried about dehydration as I have a tendency to wake up with headaches and I usually experience an energy crash mid-morning around 9-10am even if I eat and drink for breakfast the same day.
I'm being examined for dysmotility of the intestines so going without food is fine - I'm not worried about that. I'm not sure about fluids though given that my bowel issues already means I'm drinking far to little for someone with an ileostomy.

Should I focus on drinking as much as possible until the cut off point at midnight or should I go for a mix of food and fluids?
Any advice on how to do this is much appreciated.

I have a loop ileostomy where the distal (non-functioning) limb protrudes significantly less than the active limb. As a result, it tends to retract beneath the wafer once the stoma becomes active and the moisture causes the hydrocolloid to swell.
This traps moisture underneath the wafer, leading to skin breakdown and creating a pathway for output to leak underneath the wafer and onto my skin.

I'm already using convex appliances. My stoma nurse suggested trying a barrier ring, which does a great job of absorbing moisture. However, as the ring swells, it also makes it even easier for the distal limb to disappear beneath the wafer. So while it's better for my skin, it also seems to make me more prone to leaks.

I've tried using a barrier ring, using the wafer alone, and using stoma paste, but they all give me essentially the same result.

Does anyone have any advice?

Has anyone gotten an ileostomy due to colonic inertia only to have the same symptoms show up again after stoma surgery?

I got my ileo in August last year due to a combination of colonic inertia and cancer. Prior to that I had been trialling various treatments and medications to combat colonic inertia. At first everything was great and I could eat everything and then some. Over the past six months I've been experiencing bloating, fullness after a few bites of food, nausea - eerily similar to how it was before the stoma surgery but now my colon cannot be the culprit.
I'm currently awaiting an MRI as well as results from my upper endoscopy, but if anyone has experienced something similar I would love to hear if you managed to find a solution.