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?

@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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Welcome to Connect, @rwfliess. Indeed the ostomy group is new. Thanks for helping us to build a safe, welcoming space where people can talk frankly about living with an ostomy. I’d like to introduce you to @hanseron who had an ileostomy 50 years ago!

Rwfliess, what was the biggest challenge you experienced adjusting to life with the new ileostomy and how are you managing now?

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I have both a colostomy and ileo conduit

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I have experience with this with my dad who lived with an illiostomy for 20 years. The best advice I can give anyone based on his experience is to buy the bags with adhesive built in – you pull off the tape and press it around surrounding the stoma. Using The creams and adhesives never seemed to work even though it wasn’t as expensive. It was his experience that the bag would not stay in place and moved around. So I recommend getting that even if it costs a little more because the bag stays put and that is what you want to avoid slippage and an accident. Always take an emergency supply with you and especially when traveling. Costco sells disposable gloves which come in handy. No one would ever know that my dad was wearing a bag. He managed it well until he became bedridden. I’d rather empty a colostomy bag than deal with changing a diaper. It will become second nature for you after a while. God bless you all.

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Welcome @ally56 and @cinnie.
Cinnie, great to hear that the ileostomy didn’t stop your dad from traveling. What, if any precautions, did he have to consider when planning multi-day trips or out of country trips?

Ally, we look forward to getting to know more about you. If you’re comfortable sharing, how long have you been living with the colostomy and ileal conduit?

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I have had my costomy since 2001 and my Ileo conduit since 2002. I had to get both because of a procedure that did not go well.
It took me a long time to get over that.
Now they are just a way of life for me.

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I will be getting a colostomy in a month. Please give some hints on starting this new chapter. Incontinence and sigmoidocele is the reason.

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@mpy952

I will be getting a colostomy in a month. Please give some hints on starting this new chapter. Incontinence and sigmoidocele is the reason.

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Read as much as you can and ask questions and more questions.
mlmcg

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Make sure you get your questions answered.
TheOstomy nurses at Mayo are awesome.

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@mpy952

I will be getting a colostomy in a month. Please give some hints on starting this new chapter. Incontinence and sigmoidocele is the reason.

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Welcome to Connect, @mpy952. I’m so glad you’ve joined this incredibly informative group. Here’s some in-depth information from Mayo Clinic, which you may wish to view:
Ostomy: Adapting to life after colostomy, ileostomy or urostomy: https://www.mayoclinic.org/diseases-conditions/colon-cancer/in-depth/ostomy/art-20045825

Asking questions, as suggested by @mlmcg @ally56 is a great suggestion to get started, and I’m confident that @dawn_giacabazi @soul @rwfliess @hanseron @cinnie will also return to welcome you and share their insights.

@mpy952, if you’re comfortable sharing, what symptoms led to the diagnosis of sigmoidocele? Were other options, besides colostomy, considered?

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I wrote a long reply and I must not have hit “post”. I have been having some bowel incontinence for several years. This summer it all changed. Diarrhea had become a big problem and it was affecting my life. Short history if that is possible. 4 major abdominal surgeries in 9 years. The first and worst was bowel perforation and colostomy. Then resection. Then 2 separate ventral hernia repairs that had 5 hernias each..So I had all those horrible tests on your bowels. Poor muscle tone,and several other things wrong there. Then he told me my sigmoid colon was obstructing the rectum. He told me I could do nothing and I said no. I want to be able to enjoy things outside my house again. The first surgery he talked about was that he used mesh and tacked colon to sacrum. Didn’t always solve problem and was more complex than colostomy. Since I did not need to have any more surgeries because of scaring that he recommended a simpler colostomy surgery. And it would solve both problems. I got a 2nd opinion and he agreed with the other. Does this sounds reasonable?

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@mpy952

I wrote a long reply and I must not have hit “post”. I have been having some bowel incontinence for several years. This summer it all changed. Diarrhea had become a big problem and it was affecting my life. Short history if that is possible. 4 major abdominal surgeries in 9 years. The first and worst was bowel perforation and colostomy. Then resection. Then 2 separate ventral hernia repairs that had 5 hernias each..So I had all those horrible tests on your bowels. Poor muscle tone,and several other things wrong there. Then he told me my sigmoid colon was obstructing the rectum. He told me I could do nothing and I said no. I want to be able to enjoy things outside my house again. The first surgery he talked about was that he used mesh and tacked colon to sacrum. Didn’t always solve problem and was more complex than colostomy. Since I did not need to have any more surgeries because of scaring that he recommended a simpler colostomy surgery. And it would solve both problems. I got a 2nd opinion and he agreed with the other. Does this sounds reasonable?

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Do not be fearful of colostomy surgery! 
The doctor will cut a small hole in your abdomen pull a part of your colon through the hole then sew the colon to your abdomen so it stays put. You now have a  bright red stoma on your tummy. The stoma does not have any nerve endings so you cannot feel the it. You just have to wear a bag/pouch/appliance on your tummy to hold your poop.
Poop is your friend, it is just the food you put in your mouth that your body could not use and it had to get rid of it. I receive my supplies from Shield HealthCare you can check them out at http://www.shieldhealthcare.com. They have been very helpful. They have a booklet "Living well with an Ostomy" that you can request that maybe able to answer some of your questions.
Yes, there are some side effects you can no longer wear tight pants without wearing a loose top. There are bathing suits you can wear, pleated pants work best for me and I usually wear a vest, just because. Depending on how much of your GI track has been removed could restrict what you can and cannot do, the biggest problem could be your acceptance of your new life. I have not been able to do anything I wanted to do since "Siggie" arrived in my life. (My sigmoid was removed that is how Siggie got his name.)
Do not be fearful of colostomy surgery!
mlmcg

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@mpy952

I wrote a long reply and I must not have hit “post”. I have been having some bowel incontinence for several years. This summer it all changed. Diarrhea had become a big problem and it was affecting my life. Short history if that is possible. 4 major abdominal surgeries in 9 years. The first and worst was bowel perforation and colostomy. Then resection. Then 2 separate ventral hernia repairs that had 5 hernias each..So I had all those horrible tests on your bowels. Poor muscle tone,and several other things wrong there. Then he told me my sigmoid colon was obstructing the rectum. He told me I could do nothing and I said no. I want to be able to enjoy things outside my house again. The first surgery he talked about was that he used mesh and tacked colon to sacrum. Didn’t always solve problem and was more complex than colostomy. Since I did not need to have any more surgeries because of scaring that he recommended a simpler colostomy surgery. And it would solve both problems. I got a 2nd opinion and he agreed with the other. Does this sounds reasonable?

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Thanks so much Mimcg for your encouraging words. I am afraid of leaving my home now because of accidents and I want to get back to a new normal,if that makes sense. I had a colostomy for 3 months in 2008. I actually didn’t think that it was not too horrible because I was dealing with a wound vac on that long open abdominal incision and that was horrible after the colon perforation. I will be having surgery in Memphis by the Dr. That has the only Ostomy Clinic in town. I will have several meetings before the date. I am going to be busy trying to get Thanksgiving and Christmas tended to before Nov.27. I look forward to checking this site and learning how to adapt better to this. Thanks again. Mpy952

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@mpy952

I wrote a long reply and I must not have hit “post”. I have been having some bowel incontinence for several years. This summer it all changed. Diarrhea had become a big problem and it was affecting my life. Short history if that is possible. 4 major abdominal surgeries in 9 years. The first and worst was bowel perforation and colostomy. Then resection. Then 2 separate ventral hernia repairs that had 5 hernias each..So I had all those horrible tests on your bowels. Poor muscle tone,and several other things wrong there. Then he told me my sigmoid colon was obstructing the rectum. He told me I could do nothing and I said no. I want to be able to enjoy things outside my house again. The first surgery he talked about was that he used mesh and tacked colon to sacrum. Didn’t always solve problem and was more complex than colostomy. Since I did not need to have any more surgeries because of scaring that he recommended a simpler colostomy surgery. And it would solve both problems. I got a 2nd opinion and he agreed with the other. Does this sounds reasonable?

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New normal makes perfect sense. Do not be afraid to admit you will have a new friend, your ostomy.
If you will be getting an ostomy on the 27th of November ask as many questions of the doctor as you can before then, start your list now so you do not forget what you want to know. 
When the nurse(s), who shows you how to care for your ostomy, is working with you find out how long they have been working with ostomy patients (ostomates); what information they have that will help you; who can you contact once you are home with your questions; and who orders your supplies. Do you have to use the supplies they recommend; will your insurance cover the cost; can you use free supplies or get help covering the cost of your supplies. Having an experienced ostomy/wound nurse is one of the best go-to's you could have. 
For a short time you could use diapers when you want to go out. I had to wear them in re-hab and they are not too bad. I will try to answer your questions, if I do not know the answer I will tell you.
mlmcg

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@mpy952

I wrote a long reply and I must not have hit “post”. I have been having some bowel incontinence for several years. This summer it all changed. Diarrhea had become a big problem and it was affecting my life. Short history if that is possible. 4 major abdominal surgeries in 9 years. The first and worst was bowel perforation and colostomy. Then resection. Then 2 separate ventral hernia repairs that had 5 hernias each..So I had all those horrible tests on your bowels. Poor muscle tone,and several other things wrong there. Then he told me my sigmoid colon was obstructing the rectum. He told me I could do nothing and I said no. I want to be able to enjoy things outside my house again. The first surgery he talked about was that he used mesh and tacked colon to sacrum. Didn’t always solve problem and was more complex than colostomy. Since I did not need to have any more surgeries because of scaring that he recommended a simpler colostomy surgery. And it would solve both problems. I got a 2nd opinion and he agreed with the other. Does this sounds reasonable?

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The typo on the Dr’s name I did not catch. Who would let a Dr. That touch them? His name is Dr. Joshua Katz. I will start a list using your questions first and add to them. Thanks again. Please chime in if anyone else have some hints.

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@colleenyoung

Welcome @ally56 and @cinnie.
Cinnie, great to hear that the ileostomy didn’t stop your dad from traveling. What, if any precautions, did he have to consider when planning multi-day trips or out of country trips?

Ally, we look forward to getting to know more about you. If you’re comfortable sharing, how long have you been living with the colostomy and ileal conduit?

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You asked about traveling- he carried supplies with him on trips. Extra bags and the clean up products fit easily in the small case he used for razor, shaving cream, etc. one time he forgot to bring supplies. We were able to find what he needed at a local drug store. So no bad experience traveling, as long as he was organized.

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