I am new to wearing a colostomy bag, a life-changing event. I have had it since November 1. I have a ton of questions but no one to talk to. I need help in all areas. Any help/advice will be greatly appreciated.
Eating habits, leakage, best setup to use, what feelings are to be expected, sleep ideas, sexual, & exercise.
Thanks,
Rocc, 38, SC
Hello JHarper.
Thank you for your post and questions. You are certainly not alone in wanting all these questions answered. However, each one often deserves a whole range of answers independently of the others and many people might be put off being asked about them all at once. In case my supposition is correct, I would say that your questions are ones that have been asked before. So, may I suggest that a productive way forward at this early stage might be to 'browse' through the 'PREMIUM CONTENT' (above) where many of these questions and previous responses can be found.
My own thoughts on most of the subjects you list have been documented over the years in verse and are now available in the 'COLLECTIONS' section at the top of the page.
I do hope that you also get loads of replies and people that you can talk to directly about all the things that are on your mind.
Best wishes
Bill
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My stoma doesn't stick out that much. I have a dip at the bottom. I have tried using the ring with the wafer and without the ring. It still leaks down under and gets on my skin. The nurse ordered something different, but it hasn't come yet. I think it will have a hump if I understood her correctly.
I experience a lot of cramps and gas. I assume I'm not drinking enough water.
Since your colostomy is still fairly new, your stoma will change shapes and sizes as it heals. I won't go into which setup is best for you because it seems that everyone has a slightly different setup they use, and your ostomy nurse should be able to figure out what will work best for you. I have a drainable one-piece from Hollister with a barrier ring. For the gas and cramps, your output is what you put in. So, you may have to change or limit some of the things you were eating or drinking before to avoid any issues that come up. Lots of water is always good. I've had my colostomy bag since March and I haven't found anything I can't eat; there are just certain things I eat very little of or avoid altogether to not get a blockage. Exercise, right now you should be walking a lot, no heavy lifting. It takes time for your body to heal internally; don't push it. Sleep, you pretty much have three choices: your back, your right side, or your left side. They say you can sleep on your stomach and there are pillows made to allow more comfort for stomach sleeping, but I've never tried those. I've found two things so far that have really helped me: 1) Buy an ostomy wrap to wear under your shirt. It helps hold your bag close to your body and supports your bag while living your life. I got mine from Ostomysecrets, but there are multiple places you can buy from. 2) I try not to eat anything after 8 PM. Drink as much water as you want, but what I've found (for me) is that I have very little output during the night since I've changed to this about 3-4 weeks ago. Once you get used to it, in my opinion, the bag isn't that big of a deal. Ask any other questions and any of us will try to answer.
Eating habits: I can eat what I did before. I eat more granola bars in between meals than before.
Leakage: I have started using Salts rings. SMSAS35 35-70mm and 4.2 thick. I only need a 27mm hole, so I bend it over and flatten the bend to get a fit. I often get more than 10 days' wear time.
Best setup to use: I got Hollister in the hospital; that is what I use, except for rings.
What feeling is to be expected: Depression, anger, rage. Seek help if you need it. Understanding what it is and where it comes from is the first step.
Sleep ideas: I sleep on my side, either one; on my back, I snore. Keep a pad on the bed for any accidents. I have not had any for years.
Sexual: They mess up a lot of nerves down there. My wife has stayed with me, so no dating for me. It just takes time.
Exercise: I am not on a program. Just try to do something every day, yard work, shovel snow, laundry. I was limited to like 5 lbs for a few months.
Try looking at some history for more information or ask a new question. Things get better with time.
Welcome. Education is key on this new journey of yours. I suggest you check out UOAA, United Ostomy Association of America. It's our national organization. There you will learn about foods, blockages, skin care, clothing, products, travel, activities, and a whole host of other tricks of the trade. You might also want to check out a local support group near you. Just remember, you are not alone on this new journey of yours. Best of luck.
I agree with Bill; there is a lot of information under the collections tab at the top of the page. Then click on the premium content. If you need to ask a question you can't find the answer to, feel free to post it here. Best wishes.
Welcome to the site, first of all. As others have mentioned, there is just about anything you can think of in the premium content if you look on the list. Also, I would ring different stoma companies and ask for some free samples to get a look and feel of different types of bags/skin care/adhesive spray, etc. Keep us posted on how you are getting on. Xx
Hey, I am in Spartanburg. Had an ileostomy since 1999. Don't mind answering questions. Just let me know. My email is in my bio.
