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?

@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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@mlmcg

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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I am fine with my bladder and bowel movements as it is now. It all goes out my rectum and I can pretty much control it. Two infections over the past 2 years are not much of a down side compared to having both bladder and bowel surgery for 2 bags. The doctors want to do both. I don't know how long this will last and if I should have the surgery now while I am in good health for a 71 year old. I don't have any/many food issues and try and keep it none spicy. Don't know anyone else that is similar to me. Prostate cancer was 2005 and fine PSA for the past 11 years so cancer isn't a big issue. Thanks for the coments.

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Having any surgery when you are in good health is better than having emergency surgery, the recovery time is much faster. I had semi-emergency surgery, I was admitted Wednesday night, in surgery Friday morning. I don't remember Thursday, I was either knocked out by the doctors or so sick, I knew I was in good hands, that I don't remember all the test that they ran. Learning how to live with and emptying "2 bags" will require a more alert person who is willing to learn now to do new things. Bending over to pick something up off the floor will be a new experience. You have made changes in your life style, with the surgeries you have had, if you have the "2 bag surgery" you will be making more changes. If you have a support group you may want to discuss your concerns with when. They will either be at your side through it all or you may never see them again. We never know who our real friends are until we are faced with major adversities. I have more people there for me than I ever dreamed of.

Now is time to make the decision to step off that cliff. It could just be a small step down and a smooth path from there. Good luck.

mlmcg

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Thanks for the reply. I am part of an ostomy support group but not where the surgery would take place. My main hospital only deals with the colon so would have to go elsewhere for the bladder. Johns Hopkins in Baltimore since live out there part time(well, 3 hours away). So that means having them do both surgeries. With the radiation that my bowels have had, I am concerned that they would not be easily able to get good tissue for the stoma. When I got the previous infections, I was out of it in about 4 hours and had to get an ambulance ride to the ER for antibiotics. They pumped two bags of liquids into me and gave me antibiotics and sent me home after being there about 4 hours. Second time, I was much better and the ER doctors at the same hospital freaked and sent me to a larger hospital for an admit for 5 days of antibiotics. That really screwed up my bowels and bladder. My urethera was closed before and they forced a catheter into it and now I had more problems with urine than I did before. Neither hospital could do any infection tests since my urine was always compromised/dirty so they just threw meds at me. I know it is better having it in good health but….. will consider it some more.

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I am very thankful for my medical insurance I would never have had to go through the roller coaster ride you had to. I would have been sent to one hospital, and only one, for the surgeries and treated for the infections, even if they could not have done the surgeries at the same time at least they would have been done at the same place. Some of our medical insurances companies su..s and are only interested in their bottom line and not in what is best for us. Good luck.

mlmcg

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It was the hospital, not the insurance company. I first went to a small hospital in southern Maryland but they weren't very high tech. A major hospital 45 miles away was my next stop after being transferred by ambulance. They do colon work but not bladder and they are a fairly large and sophisticated hospital complex but they don't do bladder surgeries. Baltimore is 3 hours further north and no way I was going all that distance since it wasn't a life and death situation. Glad the doctors recognized what their limitations are rather than practice on me. May have it done here in WI or at Mayo if it flares up again. Insurance covered everything which I like.

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Hi,
My name is Lori,im not good with this. As soon as I get involved I have a bad spell and I'm gone. I have ben sick so many years,to many hospitals. All the big ones. I'm with Cleveland Clinic the last couple. I have tried so many meds for the extreme nausea, they don't work. He said the damage in the colon from the gastroparesis is causing the nausea and vomiting. They are going to do the colostomy bag witch should take the symptoms away. Does anyone know if it will work? They did the P.O.P. procedure to make the food go through but that didn't work, almost forty percent is still in the stomach?

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