From Ileo to Colostomy: A Personal Journey and Struggles

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debcrd
Sep 28, 2009 6:56 pm

In April of 2009, I went from an ileo to a colostomy, the biggest and worst thing I have done. Seven years ago, I had an ileo due to many years of Crohn's. I was given a better "quality of life," I was told. I went through 7 years of leaks, stones, you name it, due to dehydration and high output. So finally, a doctor said we will do a colostomy to stop the problems. Well, the leaks stopped, but OMG, the gas is so embarrassing. I never had gas sounds with an ileo. I have tried everything: the diet, the gas pills, deleting foods, you name it. You could easily wear two different sizes of pants; that's how far my colostomy stoma and gas push my slacks out. I used to go out dancing and was very active in many ways. Now, I sit home very depressed because of the noises and the puffiness. I have tried the bags with filters on; they are a joke. They don't let the air out. So, this is my rant to make me feel better...haha...life sucks is all I can say.

Past Member
Oct 02, 2009 12:07 am

I used to have an ileo also. I didn't have gas with that either. But... I would rather have the gas than the constant leaking at 3 am every other night. I would never let my boyfriend sleep over!!!!

I could do without the noise. Especially when I'm at work taking mortgage applications after lunch. They don't know, I just say nothing or if they notice I just say I have the loudest tummy when I'm hungry. Who knows if they believe me.

I have controlled it a lot by taking Digestive Health for GAS (found in the area where they sell Gas-X and Beano) and I also take with it Kyo-Dophilus from the local Nutrition Store. It contains L. Acidophilus; B. bifidum and B. longum and has 1.5 billion live cells per capsule to promote healthy intestinal function.

I take 1 pill each in the morning and 1 pill each at dinner. If I do this every day the gas is drastically reduced!

Hope this helps!!! Don't stay home, everyone passes gas. My man does by accident all the time. :)

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Past Member
Oct 07, 2009 2:42 pm

Honey, I get gas too, real bad. My ostomy actually farts big style, and yeah, it can be embarrassing. I agree, filters don't really work. Our stomachs make some weird random noises, but the reality is, people only know you have an ostomy if you tell them because people's stomachs make weird noises anyway. Several people have remarked on my stomach noises, but I just reply that I have indigestion or something like that, and that's the end of the conversation. Some people are ignorant enough to not even know what a colostomy is or what it does. Honestly, please don't let this get you depressed. People have all sorts of ailments: bad breath, smelly underarms, and when my dad takes his shoes off after a hard day, the smell takes my breath away, haha! A mantra I use when I'm in front of people and this happens, or for some reason it smells a bit, I look at whoever I'm with and pick a quality of theirs that isn't as good as mine. For example, "I may have an ostomy, but my teeth are nicer than hers," or "I may have an ostomy, but this guy's got a real B.O. problem." Keep these thoughts to yourself and don't feel bad for thinking them, as we all too well seem to focus on our own bad points! This may make you feel better, I hope. xxxx

teddybear54
Oct 15, 2009 9:29 pm

Hi Debbie,
I share your pain, or your gas—just kidding. I know what you are talking about. At first, for me, it was really bad, but I've learned which foods to avoid, like sweet corn, beer, and broccoli. It helps to eat small amounts but eat more often. I know it's embarrassing and not to mention smelly. A few times at family gatherings, I've had to go outside to burp my bag. It's hard to explain to people that I have to let out my gas. For me, it has gotten better. Drink lots of water, keep the stool a good consistency, and avoid too much rice, chocolate, and potatoes, as all of these thicken the stool. Before you go out, try not to eat too much; I found that this helps. All the best, Ron

BK1940
Nov 14, 2009 8:35 pm
Hi Debbie, I've been irrigating for 5 years and I wear a disposible stoma cap with a filter that rarely works, but by irrigating, I hardly ever have gas, unless I have a day where I eat a lot of carbs. I do drink a lot of water and avoid sodas. nothing ever goes in my stoma cap. I go dancing a lot and have never had a problem.
 

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imtheone
Jul 01, 2012 9:32 pm

Hi Debbie, I think everyone is different. I have an ileostomy and have had my share of problems, still do. Gas is not much at all, or I should say gas sounds are not bad. I eat anything I want to eat, and yes, some things are going to give everyone trouble, i.e., sodas (carbonation), greens, milk, cheese. A lot of things you just have to try different things. As far as worrying about what others think, please don't. I have found that if people don't have what you have, they will never understand. Don't stay home; go out and have fun. I used to have a lot of leaks that would keep me home. After 3 years of experimenting, I have fewer leaks, and I go out all the time now. As far as gas, I never had noise that could be heard unless it was silent in the room, and even then, it wasn't loud. Don't worry about others; take care of yourself. You're too beautiful to stay home.

debcrd
Jul 02, 2012 2:31 am

Believe me, there's a big difference between an ileo and a colostomy. Since I wrote this, I have changed a lot of things when I fly. Now, I SSR of the airline, I ask for an aisle seat so that my pouch isn't next to anyone, and I do not eat gassy things. I also do very low carbs now due to becoming a diabetic due to a massive infection throughout my body. I tend to be very upbeat, but when I wrote the first blog, it just seemed more bothersome than normal.

imtheone
Jul 02, 2012 3:37 am

Never had a colostomy, went right to ileostomy. I know some people with colostomies and they have leaking problems also. Hope you're doing great now. I don't want you to be down. If you ever need to talk, get up with me, Skip. I'm on FB, Skip Beach.