Ostomy: Adapting to life after colostomy, ileostomy or urostomy

Posted by Colleen Young @colleenyoung, Sep 20, 2017

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?

It sounds as if you are not having a good time with your ileostomy. How long ago did you have your surgery? The reason I asked was I had problems getting use to the entire process of how to put on a new bag, emptying it and living with the leaks. After 3 years, it doesn't seem it was that long ago, I have things almost figured out. I do not have an ileostomy, but most all of my ileum has been removed so I had, and have, lots of diarrhea. I have a one piece pouch because of my scar and it sounds as if you are using a two piece system. I have never use a two piece so I do not have experience with them, but if you find the new system a better fit, good for you. If you still feel it is not right keep trying until you find a system that is what you need. There are lots of types for every type of body, for you, to choose from.

I wish I could help with your leaks but using a one piece system, I can not help you. If you are not getting a good seal when applying the base that could be the problem. I have noticed that taking lots of hot showers can break the seal, I have no idea what soaking in a tub does. There are waterproof tapes that can be used to seal the seal on the pouch when you are having trouble with leaking. If you are having diarrhea see a GI doctor, if you have not already. You probably will be taking lots of pills to make up for what the ileum can not do. If you have not seen a nutritionist, you may want to know what to eat and what you are unable to eat and when. Your life style may change. Do you eat just before going to bed? That may have to change if you are. Be sure to empty your bag before you go to bed which can also help with your middle night runs to the bathroom. I still have times I have to empty my bag in the middle of the night.

Do you know who else in your family has Lynch Syndrome? Does anyone also have an ileostomy? The word cancer can be very scary. When the doctor was looking for cancer in me, I had to get over the fear of the word. Once I was able to do that I had to deal with the death of my grandparents. That was in 1975, I am still here. The doctors figured if they could get me down the road another 20 years they had done their job. They not only did their job I may have outlived them. Good luck.

mlmcg

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I had a Total Colectomy 2 years ago. At first I was doing well once I got to my new normal. For the last 7 months I have had extreme pain in my stomach. After a ton of tests one thing that they discovered is that I an not digesting my food. Has anyone experienced this. Help!

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@obrkatie

I had a Total Colectomy 2 years ago. At first I was doing well once I got to my new normal. For the last 7 months I have had extreme pain in my stomach. After a ton of tests one thing that they discovered is that I an not digesting my food. Has anyone experienced this. Help!

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I had a right colectomy 2 years ago and my gallbladder removed 1 year ago-no colostomy. BUT the last 6 months I have had chronic diarrhea and rarely can get by without using Imodium frequently. Any suggestions?

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@obrkatie

I had a Total Colectomy 2 years ago. At first I was doing well once I got to my new normal. For the last 7 months I have had extreme pain in my stomach. After a ton of tests one thing that they discovered is that I an not digesting my food. Has anyone experienced this. Help!

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If you have chronic diarrhea run, do not walk, to see your doctor. Over the counter meds are not what you need. If you do not get help from the first doctor see another one. I take two different meds for my diarrhea. Good luck

mlmcg

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These dates are old..Is it still running?

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Hi, I am Richard. I am told that I need an ostomy so that I don't get any further infections. I had prostate cancer in 2005 and had radiation. I had a non cancer lower bowel resection in 2002 with about 12" of lower bowel by rectum removed. I now have a fistual between the bladder and the colon in that area so that my bladder empties into my colon which also means some colon matter gets into my bladder causing possibilities for infection. After 2 years like this, I have had 2 bad infections lasting about 10 days each and taken care of by antibiotics. How bad does it have to get before I have to get an ostomy? How bad were the others on this site before they had the surgery?

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@readingteacher

These dates are old..Is it still running?

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Hi @readingteacher, yes this discussion is still active with recent posts in June and July of this year. Do you have an ostomy?

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@obrkatie

I had a Total Colectomy 2 years ago. At first I was doing well once I got to my new normal. For the last 7 months I have had extreme pain in my stomach. After a ton of tests one thing that they discovered is that I an not digesting my food. Has anyone experienced this. Help!

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Katie (@obrkatie) I'm wondering if you saw the responses to you in this discussion:

– Total abdominal colectomy https://connect.mayoclinic.org/discussion/total-abdominal-colectomy/

@tressa has your diarrhea issue been resolved yet?

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@hodagwi

Hi, I am Richard. I am told that I need an ostomy so that I don't get any further infections. I had prostate cancer in 2005 and had radiation. I had a non cancer lower bowel resection in 2002 with about 12" of lower bowel by rectum removed. I now have a fistual between the bladder and the colon in that area so that my bladder empties into my colon which also means some colon matter gets into my bladder causing possibilities for infection. After 2 years like this, I have had 2 bad infections lasting about 10 days each and taken care of by antibiotics. How bad does it have to get before I have to get an ostomy? How bad were the others on this site before they had the surgery?

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any replies?

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I had my ostomy surgery in August of 2014, my sigmoid died a slow death after it received 6 weeks of radiation in 1980. Yes, ostomys can be a problem because they are like babies. You are ready to go out and they want to be emptied. Pain, I have none. Infection, I haven't had any. I have had a third of my GI track removed so there are things I cannot eat. I also have to take vitamins and minerals in pill form because most of my ilium that removed them from my food has been removed. Since I am a female, I know nothing about prostate cancer. Yes, I have had my share of cancer. Four different kinds.

Is there a reason you have not already had an ostomy? Will you get to have the full function of your bladder if you have the ostomy? Is there some other reason you never had the ostomy surgery? It will take time to get get use to the ostomy. The hardest part about getting an ostomy is telling others that you have one. They will be fearful if you are fearful, they will want to know what it is like to have one and you get to tell them.

You will not get to wear tight fitting jeans, mine have pleats and I wear vest, long tops or jackets. You can always wear a nice pair of pleated slacks, shirt tucked in and a jacket then you will look like you did before the ostomy. If you want to wear shorts or a bathing suit it will be up to you just how much of your ostomy you want to show off. The more antibiotics you take you are setting yourself up to be unable to take them ever again. I have a long list of meds I cannot take.

Next week call your doctor and say that you want to talk about an ostomy. Good luck.

mlmcg

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@colleenyoung

Hi @1228angela @nythriver @manveen @dawn_giacabazi @hatethis @soul and @kidbjp, I’d like to invite you to this new discussion group about ostomy. People who have recently had an ostomy have many questions. I’m hoping that you can share your experiences to help us get the conversation started and make people feel welcome talking about adapting to life after a colostomy, ileostomy or urostomy. Share your story.

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If the adhesive is not sticking to skin and bag does. Not have good fit use hair dryer to make adhesive stick better or place your hand over bag once applied up to15 minutes heat from your hand makes a better seal as well as Hair dryer also I had the bag fall off at least once daily due to stomach issue but thank god only had it for2.7 minths

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@rwfliess

I see that this group isn’t very active, currently. I had my ileostomy at Mayo in January 2013. I am very happy with it. I haven’t read all the posts above yet, but maybe they’ll be something new for me to learn or contribute. Fingers crossed this thread becomes more active… I will definitely participate. I’d really like to help people not be scared.

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Put pin hole in bag so gas does not fill up bag then you are1/3 full of stool plus gas and you have a mess

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