Switching from Convex to Flat - Any Experiences?

I am 5.5 months post-op with a colostomy. I started out flat and then needed mild convexity skin barriers (wafers) when my sutures came undone and my stoma sunk in on one side (the bottom, of course). I have had a lot of problems with stool post-op, no doubt due to post-op chemo even now that it is finished... Anyway, I am wondering if anyone has gone back from convex to flat. My stoma sticks out well. I am doing the experiment today with a flat skin barrier...

Hello Ali. 

I'm sorry I don't have any knowledge in this area but it's great to hear that you are experimenting. Let us know how you get on. 

Best wishes

Bill

Hi Bill,

So far, so good, but it is very nerve-racking. I'm also hardly eating, so it's not a normal activity.

Ali Canada

Hello Ali.

Good to hear that your experimentationis working for you and the nerves about it are quite normal.

Some of the stuff I've experimented with have been very concerning at times and it makes me wonder what the medics would have to say if it went wrong and I had to call them in. So far this has not happened and I've got away with some pretty scary experiments, some of which I'm still using years after I first tried them. I see the experimentation a little like trying out different foods in that if you try it and it doesn't work, at least you know what to avoid, whereas if you never try anything, you don't know if you could be enhancing your quality of life or not.

Best wishes

Bill 

Hi Bill,

Glad to see I am not the only one who goes out on the edge but who also feels the pulse pounding with the decision. Today I plan on trying coffee which is the quintessential test. I may even go for a walk to give it a real push! I did some stuff around the house yesterday but I need to see how this will hold up. Literally.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hello Ali.

I cannot drink coffee or tea unless it's decaffinated because the caffeine gives me the shakes as if I'm developing Parkinsons disease. I do a lot of walking and a little bit of other controlled exercise but that has come about in a gradually extending process, rather than trying too much all at once. My present jobs keep me active so this helps quite a bit without having to  think too much about it. I do wear a hernia belt all the time to try to prevent my hernia getting any worse than it is. 

I note that you have a colostomy which always makes me wonder about irrigation. If that is possible for you it would make a tremendous difference to you lifestyle during the day as it frees you up from wearing a bag and you could wear a plug instead. It would probably resolve the problem with stools as well as the irrigation does the work of clearing it all out in one go so you don't have to worry about consistency or blockages. Irrigation is not suitable for everybody but for those who are fortunate enough to be able to manage it, it works very well.

Best wishes

Bill

Hi Bill,

I had chemo after my surgery with all kinds of complications including blood clots in both lungs and a pulmonary infarction. Although I am on medication for that, it's important I remain mobile until I return to work in December. Like you, I have a job that keeps me hopping plus I walk to work. I live alone and have a house so I do whatever needs to be done myself. I try and pace myself.

I have limited the coffee because I often get diarrhea afterwards. Yesterday was instant (yuck) but it was an experiment and it went OK.

I see my team of doctors in November and I will speak with them about irrigation although I was going to call their office and ask what to do about this stool issue. I thought at this point - I will be 6 months post-op this week - I should have normal stool more often. It makes me not want to eat and I am down to 1-2 meals per day.

The flat bag is holding up well though.

Ali

Bill is right about irrigation, but check with your doctors first. I irrigate every other day, and thanks to that, I'm able to work and be back to my "normal" self. Bill, where do you get the "plugs," not in the U.S. of course. I would love to get a hold of them. Please let me know, thanks.

Hi 619,

I can't imagine irrigating every other day. What a process!

This whole colostomy life is getting me down, quite frankly.

Oh Ali, I'd rather spend an extra half hour in the bathroom every other day than restrict myself in any other way. I'm back to work as a server and travel frequently without a worry about blowouts, soiled pouches, or any other unexpected surprises. What a joy, life sure is beautiful.

Wow 619, I can't imagine that at all at this point.

Hello 619. 

I get the stoma plugs through my supplier on prescription but they are manufactured by Coloplast. They have worked well and have the advantage of being porous and let the gas escape without noise or smell (they have a filter fitted)

Over the past year I have been experimenting with some of my own designed reusable plugs and they have been working reasonably well. However, I'm only using them at nights, when I am not particularly active as they have been made of plastic or metal and I'm not yet sure what that would do if I exerted myself too much or got into awkward positions.

The advangtage of DIY is that things can be tailor made to suit my own needs, which in this instance is to keep the hole open to let gas out and train the muscles not to close tight over the hole. At the present time, I would not recommend the this technique but once I have perfected the prototypes and field-tested them during the day with normal activities, I will probably comment further.

Best wishes

Bill

Hi Bill,

I never heard of stoma plugs. I will have to look into that. I am usually active all day, including at night, so I don't know how this would work for me. I have appointments next month with the oncologist and surgical team and will bring it up (irrigation and plug).

Ali

Hello Ali.

When I was talking about my wariness about being active with the plugs, I was referring to my own designs and not the Coloplast ones, which are soft and flexible allowing me to do anything I want during the day including lots of active stuff.

Perhaps I should also comment on the fact that since I've been irrigating I do not have output for 24 hours so there is really no need to wear anything at all except to protect the stoma and soak up the small amout of mucus. I wear the plugs because the hole would close tightly over if I didn't and any gas would not be able to escape, which tends to be painful. Also, the plugs prevent the stoma making a noise and filters the smell as the gas escapes so I've continued using them for those reasons.

best wishes

Bill 

Hi Bill,

I have IBS. I don't know how this will all work with me. I will admit that this irrigation thing makes me nervous and apprehensive.

Ali

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