Switching from Convex to Flat: Any Experiences?

Hi, my name is Marsha, and although I have an ileostomy, I've had it for more than 50 years. There were no support services back then, and doctors released us into the kind hands of "visitors" ostomates, who helped us navigate maintenance the few supplies that were available back then. I was 15 when I had my surgery, so believe me, I wasn't all that careful, and tried all kinds of things back then. In more recent years, I went from using a flat (Convatec) wafer to the moldable convex wafer. My stoma has shrunk considerably and has pulled back (mostly on the bottom) into my belly. The moldable wafer allows me to form a "neck" around the stoma, which really helps with leaks.

Since I have an ileostomy (large intestine/colon) was removed, irrigation is not an option for me. But people who do it (once a day, or every other day) have virtually no leakage in between irrigations. For protection, they may decide to wear very small pouches (which just collect air and any mucus or fluid that might leak). I'm not sure what a "plug" is... different companies give the same product different names.

Remember, the stoma belongs to you and is part of your body. Don't be afraid to experiment... with products and with food. I used to be able to eat just about anything, but as I've gotten older, different foods have started to cause problems. I no longer eat dairy (had been allergic as a child) as it triggers loose output that leads to dehydration. I was never much of a coffee drinker, but my doctor no longer wants me to drink coffee (decaf or otherwise) due to kidney dysfunction. Coffee without milk or cream is no fun... so now it's water.

Best of luck to you. Stay in touch and let us know how you're doing. Marsha

Hi Marsha,

Thank you for your advice. I am trying different companies to see which ones do best for me. As for the food, I was doing okay for a while after the chemo stopped but it got worse and worse. Now everything goes right through me. I am down to a bowl of cereal per day. I do drink 2L of water and a glass of orange juice though. I am quite discouraged. Still no call from the nutritionist I called 10 days ago. I only drink lactose-free milk in my cereal, by the way, and was eating lactose-free yogurt but not now. I am sick of all this. I feel like there is something else wrong because this does not seem normal.

Ali

Hello Ali. 

Sorry to hear that you are still having problems. Unfortunately, ileostomies do tend to have this effect with some people so it is probably not abnormal.

There are a number of nutritional fibre-gel type products on the market that we recommend for elderly people when they have this sort of digestive difficulty. I wonder if this sort of thing might help with stopping the food going straight through and retaining more of the nutritional value.

Personally I use Metamucil for almost all digestive problems bhut as they don't sel it here in the UK I get it shipped in bulk from New Zealand.

Just a thought!

Best wishes

Bill 

Hi Bill,

I have a colostomy, not an ileostomy. I started taking the Imodium and the diarrhea has abated. Waiting on test results to see if I have C-difficile and a referral to a gastroenterologist as I also have IBS (since many years). Yesterday was my first diarrhea-free day and I slept great!

Thank you for the tips.

Ali

Back when I was having serious diarrhea problems after the cancer colon resection and before the ostomy, I would alternate Imodium (over the counter) with Lomotil (prescription, controlled substance in the US), and that tended to bring it down to only 1-3 times per day - QUITE helpful! Check with your doctor. Also check to see if taking a probiotic regularly will help - it puts good bacteria back into the remains of your gut to help crowd out the bad bacteria which tends to cause problems like inflammation, gas, and diarrhea.

I noticed you are still doing chemo? (Unless I misunderstood that part.) Things get a LOT better once chemo is finished. Also check with your doctor about Vitamin B12 and B6 supplements for control of chemo-induced neuropathy. From the Dana-Farber Cancer Institute:

"Peripheral neuropathy, caused by certain chemotherapy drugs, causes numbness and tingling in the hands and feet. It is thought that vitamin B6 can aid in reducing neuropathy by maintaining the covering on nerve endings. In doses from 50-200 mg, B6 has been found to be effective in treating neuropathy. However, at doses higher than 200mg, it actually has the opposite effect and can contribute to the neuropathy. Therefore, we generally recommend a dose of 100mg B6, if approved by your doctor. Vitamin B12 at 1000 mcg may also help with symptoms of neuropathy."

Also, time is on your side. As you finish treatment and get back to a more normal life, things will get better for you, but sometimes progress is so slow, you only notice it as you look back. I hope some of this helps you, and you can look back soon and say, "Wow, I really am better!"

Hi Dana,

I finished my chemo at the end of July. Blood tests show vitamin levels normal. I don't have neuropathy right now. Today, after two days on Imodium, diarrhea is better. I have IBS so I have to be careful with meds. Will continue on that until results come in to see if I have C-difficile and until I see gastroenterologist. I see the whole medical team next month so I guess we can go over this if I am not better.

Thank you for your suggestions.

Ali