Gratitude for Support and Advice: A Journey with a New Ostomy

My colostomy was placed October 1, 2019. Not that long ago. But all is working out just fine.

My original post was for desperate advice on how to deal with the very unpleasant continuing pancaking which, as many know, is a very challenging occurrence for a new ostomate. There were posts that followed regarding finding clothes that didn't interfere with the ostomy, and another post regarding the mysterious mucus coming out of a most unexpected orifice and whether it was a sign of trouble. No. Just a normal body function.

So there now is no pancaking. The body has acclimated and the diet I follow is controlled to the point of allowing the body to form output that is like I wish it to be. And the clothes I found are perfect and do not interfere in any way. I am fortunate to be retired and live in a small Arizona town where nobody cares that I wear my shirt tail untucked. Perfect. And as for the mucus? Well, I just have to sit when I have to pee (most of the time) at home. And the pants problem was solved with jeans with mid-rise and elastic waist. Since I wear my shirt untucked nobody can tell.

I just want to thank those who offered advice in my early days as a new ostomate. And to advise those who have challenges with their new lifestyle to be patient, things will certainly change, and research and seek advice because the success of the changes to come can be negative if made with poor choices, and potentially very positive with the right ones. Patience, Diligence and Acceptance.

Peace,
BobK

Hi,

Your post really resonates with me - glad to hear things are going well for you now. I'm wondering what sort of diet you've adopted to move away from pancaking (I don't suppose that's an actual word!). I've had my colostomy for ten years and still haven't gained control. I regularly use Imodium. I know if I have too much fruit and fiber, I'll be in trouble - but I like to eat healthily. I'd prefer to be vegetarian, but that's not an option.

I was so freaked out in the early days of mucus - and sometimes traces of blood - but like you say, one does become used to it more or less.

Something that I've only recently realized is that my hands check my bag all the time. It wasn't until I went to an event where we had to hold each other's hands, and I felt so physically uncomfortable that I saw what I'm doing. I can't imagine I'm alone in that...

Anyway, as I said - I'd be interested to find out about having more control with a diet idea. Thank you - Morgan

Hi Bob, I had my first surgery, which gave me a colostomy, in Oct. of 2019 myself! I've since had three more surgeries and now have an ileostomy, but otherwise our stories are so similar. I remember the pancaking in the early days myself. I too feel great gratitude for all the help and support I've received from members on this site. I can't even imagine how I would have coped with all the whole learning curve without all the knowledge and empathy I've received here. I'm coping really well with my new life and can honestly say, my quality of life is better than it was pre-ostomy.

Thanks for reminding myself and others that it's good to show gratitude.

Terry

Hi Morgan, I'm wondering if your pancaking has anything to do with your diet at all. Mine didn't. I was just using an appliance that didn't work well for me, didn't adhere to my skin well, and allowed the output to get under the flange and build up. Have you tried other brands of pouches? I can't wear Coloplast, and have found the best pouch for me is a Hollister. Everyone is different. Have you tried convex instead of flat flanges? That could also make a huge difference. If you haven't tried a few options, you really should. It could improve things for you big time.

Terry

Hi, Morgan.

Sorry to hear you are still working on a pancaking issue. That was the absolute worst part of this colostomy episode. I did hundreds of hours of research when I began four years ago. I watched videos and read hundreds of posts and articles from anyone I could find. I found, for me, that a high fiber diet was what I needed in order to get the consistency and form of output and was the answer to getting it un-stuck so that it could get out and away from the stoma and gravity could work to finish the task.

In all my research I've read opinions that disagree with what worked for me, but there were opinions that did agree and gave examples of dietary choices that aid in firming up the output. I adopted a higher fiber diet and was cognizant of what resulted in right choices and which were not so right. More on that in a bit. But choosing the right flange to be less of a block is also beneficial to help gravity do its job. And I crinkle the bag to soften its surface before lubricating it with mineral oil to give it the least resistance possible from holding on to any output. And I wear clothing that does not press the bag against the stoma thereby allowing output to freely move away from the stoma.

For diet, I have very little processed food. I use soy milk for my oatmeal and cereals, not dairy. I eat pears and apples with the skin and other fruit but those are my favorites as well as small mandarin oranges which I also eat with the skin for the fiber and nutrients. And potatoes usually with the skin. I don't cook for anyone but myself so I can eat what I want, and so can you if you choose. For snacking I eat a lot of whole wheat saltines with peanut butter. Lots of peanut butter used during the week on crackers or whole wheat bread. Whole wheat pasta when I want a macaroni or spaghetti dish. And plenty of beans and rice. I'm especially fond of making various chili type dishes. I care little about salad, but I like tomatoes and cucumbers and onion. And I like making my own hummus. With a blender you can make hummus that is nothing like the offensive store variety, and great for the nutrition it offers made with garbanzos or white beans, or anything you can dream up. Delicious with toast or crackers and the digestive tract likes it. Stay hydrated!

As for checking your bag regularly? Of course. Since you can't feel when there's output being produced it's natural to feel. I check constantly. It's the card you've been dealt. It is a part of your life and once you've addressed what's the worst thing that could happen and accept it then you'll be ready for it if it does happen. There are somewhere between 725,000 - 1,000,000 people in the US with ostomies according to some national statistic. It's common, and although I don't show anyone mine, if it happens - it's not uncommon, and much less frightening than having other things unintentionally spied upon! It's something that probably saved our life.

Of course this is over simplified. I obviously eat many other things. This is just an idea of what I found that worked for me to get quickly away from the sticky pancake nightmare. I'd be glad to answer any other questions you may have. Any time. But just know, everyone's experience is different. Those who profess to not have fiber must surely have their own reasons. But for me? I haven't had a pancake in years and still healthy.

Cheers, Bob
keepers51

Hi, Terry,

Gosh, I read back and saw some of the surgeries you've had to endure to get to today. Sure hope this is the final cut. You are strong.

All the best,

Bob

Terry, hi,

You didn't address a message to me but I thought I'd comment on the use of Hollister convex. I started out with them and have never changed brands as it is easy to see by comparison that they are what is the right fit and function for me. I also found the smaller footprint flexible 11704 are the cat's meow. Stick just as well, are smaller and solved even more problems.

Bob
Keepers51

Hi Bob, it's the #8958 soft convex Hollister I use and I love it. Maybe I'll ask for a sample of the #11704 as I like the sound of 'smaller footprint and flexible'. I'm happy with what I'm using, but it never hurts to try something new. You might just find something that's even better. Thanks Bob.

Terry

I check my pouch too... very often. I named my stoma Frederick since we will be together the rest of our lives. It is an experience!

Hi, I've been stuck with the two pouches that I've had since the beginning - I'm going to take a look at the Hollister as I hadn't really ever considered changing, just glad that for the most part my skin has coped well with the two I get from Coloplast, but I think I may have been a bit short-sighted on that...thank you so much for the response - I'm going to re-read the one on diet....something that leaped out at me unfortunately, is that I'm seriously disinterested in cooking anything - so even though I don't rely too much on ready-made...lack of taste, use of plastic etc...I really eat very plainly - my husband did the cooking from when I got ill until he then died...this blasted cancer - so....no easy solution there! (unless I could afford a cook, which I most certainly can't)....as I said, I'll re-read your dietary advice and see what I can take on board.....thank you so much for responding.

I refer to mine as 'Madam'....and she did save my life, so I don't call her what I sometimes think!!

I wish you luck with the Hollisters. As you are in the U.K., you might also want to get some Salts samples. They make a really nice soft convex pouch. Worth a try. Diet can be a tricky thing as we don't all react the same to the same foods. If you are regularly taking Imodium it sounds like your output must be very loose? It seems unusual that pancaking would be an issue with loose output, as it's usually an issue with thicker output. I've found for myself, the amount of liquid in my diet generally determines the consistency of my output. The more water I drink, the looser things get. Sorry to hear about your husband. It must be even more difficult to suffer this kind of loss while going through your own medical issues.

Terry