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Ostomy: Adapting to life after colostomy, ileostomy or urostomy
It takes time to become comfortable with an ostomy — a surgically created opening in your abdomen that allows waste or urine to leave your body.
Many questions may run through your mind as you practice good ostomy care and live your life. It can help to talk to others who have been there. Perhaps you'd like to ask others questions like: What can I eat? What about leaks? Can I go back to work after colostomy? Can I ride a bike with an ileostomy? Will everyone figure out I've had urostomy surgery just by looking at me? What about intimacy?
Welcome ostomates. Let's talk frankly about living with an ostomy. Why not start by introducing yourself? What type of ostomy do you have? How's it going?
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I use the bags w/ filters. They help to eliminate some of the gas build up, but then the side effect is that the gas escape at not always the best time. It is really uncontrollable farting.
I don’t believe I could be much help on this one. My husband has a urostomy and we have not had problems with odor with his pouch. We do use Lysol spray around the bedroom due to the night bag. Wish I could be more help.
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1 ReactionI m74and have a colostomy 39 years ago never had any issues with it. I was lucky that I didn't have cancer. I farm, drove truck and work in a grain elevator. I've had a normal life with it
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2 ReactionsWelcome, Mick. 39 years, wow. What has changed over the decades with colostomy pouches/devices? What improvements have been most grateful for?
I use converted wafers and pouches. The biggest change was when they went to predict for the stone Other wise there hasn't been any changes. At first I had to watch what I ate but through the years I can eat most food. All I can say is I am lucky not to have any problems. Thanks for letting me share.
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2 ReactionsI have gotten several antibiotic resistant UTI's and a few regular UTI's since getting my Urostmies in May 2020. I don't get any of the typical symptoms because I had a cystectomy. I never knew I had one unit it reached my kidneys making me really, really sick ending up hospitalized. I am getting better at noticing even the slightest changes in my urine such as smell, foamy, etc. I use OTC (AZO) urinalysis sticks and/or drop by my Uro's office to drop off a be sample (so they can also run a culture). Getting a clean catch when sporting bilateral urostmies is a challenge as well. Getting a sample from a bag is simply not accurate in my mind. You just need to be very in tune with your body. It has taken me a while but I'm getting better at it.
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1 ReactionHi I'm Catelynn I also had an ileostomy and am seeking support in coping with issues re: same
I am new to Mayo clinic support group
Hi Catelynn, welcome. Tell us a bit more about yourself. What led to your needing an ileostomy? What challenges are you coping with?
I am considering asking
my gastroenterologist about an ileostomy and would appreciate any comments. Here's my long story:
Way back in 1995 I was treated for endometrial cancer with a total hysterectomy and extensive radiation. They burned the heck out of my insides with 35 days of total abdominal radiation (from chest to way down) followed by 9 days of intensive radiation in my lower ab and finally a 24 hour cesium implant with the state bringing it in with the tech dressed in protective gear. He
placed a barrier in my hospital room where no one was to pass for more than 5 minutes.
They told me that if I had gone for treatment anywhere else I would have had chemo and I was glad that I wouldn't lose my hair. Stupid me!
Today they tell me. "We don't do that anymore more!" Yeah but they did it to me.!
I had some digestive issues afterwards but not that bad until 20 years later. Almost exactly to the same date I had a colon cancer tumor caused by the radiation. I tried to tell the surgeon that he was going to find a lot of damage caused by the radiation but he refused to discuss it with me and said he would have to see it during the surgery. I did want s different surgeon but I didn't know one and this guy had been recommended by my long time trusted gastroenterologist. Even if i found a different surgeon I would have to make an appointment and rescheduling the surgery would take time. The tumor had not spread yet and I wanted to get it out asap. So I let this surgeon cut me up.
The surgeon told me that I would have a temporary ileostomy for about 3 months. But that didn't happen. Instead when he saw the extent of the radiation damage he cut out almost a foot of colon and almost 2 feet of my small bowel!
I have had terrible digestive issues ever since. After more than 6 years of this I can't live this way any more. I'm used to the diarrhea but no matter what I eat or even if I I don't eat anything, I have pain snd discomfort all day. And it has gotten worse over the last few weeks.. I'm currently having an exacerbation of my lung diseases and I know I won't get better because my lungs are struggling to send oxygen to my digestive system.
Over the last 6 years I have tried every drug snd every diet and nothing has worked and some made it worse.
What do you think about an ileostomy for me? Would it help stop the pain and constant discomfort? Would I be able to eat?
Any advice would be greatly appreciated. Thanks