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?

@palevsky

Back in January 2016 I had surgery for an enlarged prostate. The surgeon performed a prostatectomy . Unfortunately I had many complications scar tissue which led to a supra pubic catheter in November 2017. My stricture and sphincter have scar tissue in an area where it is only seen 1/1000. Also my bladder will not perform for me to urinate and empty. Hence after deliberating I have elected to have Indiana augmentation cystoplasty. Are there any of you who know someone possibly I can relate to since you are in a hospital 5-10 days and home recuperating for up to 3 months-4months. Doctors insist I will be able to resume all my normal activities and travel. Many questions have been answered by hospital doctors but hearing it from individuals that have experienced this directly would assuage my concerns.

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Urotomy is what I want to do. I have a Suprapubic catheter on now.This procedure was done with no chance to discuss at urologist office since my stricture was practically closed. Since then I have seen three surgeons discussing this surgery and reconstructive surgery. The latter was ruled out after having VCUG test and Urodynamics test and finding out reconstructive surgery might not be successful. Hence I am left with choice Indiana Augmentation Cystoplasty. I am aware of the surgery performed but many questions remain. I am especially concerned about complications resulting from using bowel to divert urine, such as kidney problems, electrolyte & vitamin deficiency, infections, etc. Catherizing and irrigating mucous is there difficulty? What are the challenges with traveling and participating in activities? Will I need any home care? Those are a list of questions that I feel I have insufficient information even though I asked surgeons the above. They are not the most willing to elaborate. By the way surgery if I proceed will be done at. Cleveland Clinic. Thanks for your help. One more request I have been trying to find formal patients to talk to without success. Do you have any links that may help forward it.

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@palevsky

Back in January 2016 I had surgery for an enlarged prostate. The surgeon performed a prostatectomy . Unfortunately I had many complications scar tissue which led to a supra pubic catheter in November 2017. My stricture and sphincter have scar tissue in an area where it is only seen 1/1000. Also my bladder will not perform for me to urinate and empty. Hence after deliberating I have elected to have Indiana augmentation cystoplasty. Are there any of you who know someone possibly I can relate to since you are in a hospital 5-10 days and home recuperating for up to 3 months-4months. Doctors insist I will be able to resume all my normal activities and travel. Many questions have been answered by hospital doctors but hearing it from individuals that have experienced this directly would assuage my concerns.

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Martin thanks for weighing in. I have since added a more recent post today and please respond if you can provide any info or any other sites you recommend . My wife is less than enthusiastic about this surgery and needs more convincing that this is preferred way to proceed. I live a very active lifestyle and hope I can resume it after I recover. Thanks for interest.

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This is from the NIH, see if it answers any of your questions….. https://www.ncbi.nlm.nih.gov/pubmed/22704181

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I also have strictures and have had a RUG and Urodynamic test done at Mayo and UW Madison. I will be seeing Dr Husmann again soon.

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Hi @palevsky,

I thought you might appreciate reading about augmentation cystoplasty in these medical journals:
https://emedicine.medscape.com/article/443916-technique
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3822349/

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Hello. I'm not yet a member of the "club", but I am scheduled for bladder removal on June 6th – DaVinci surgery because of a high grade carcinoma.
My urologist and oncologist both recommended the exterior bag approach, saying that the procedure for a substitute bladder has many problems.
I had been hopeful that the cancer could be removed without total removal of the bladder. The biopsy revealed aggressive invasion of the lamina propria,
but stated that the tumor abuts the smooth muscle, but does not show definite invasion into the muscularis propria. I thought this could result in a less
serious surgical approach, but my doctors both said removal was necessary, because of squamous differentiation.
I will return to this site after my bladder removal, but welcome any comments in the interim.
Ed Barnas

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@barneythe2nd

Hello. I'm not yet a member of the "club", but I am scheduled for bladder removal on June 6th – DaVinci surgery because of a high grade carcinoma.
My urologist and oncologist both recommended the exterior bag approach, saying that the procedure for a substitute bladder has many problems.
I had been hopeful that the cancer could be removed without total removal of the bladder. The biopsy revealed aggressive invasion of the lamina propria,
but stated that the tumor abuts the smooth muscle, but does not show definite invasion into the muscularis propria. I thought this could result in a less
serious surgical approach, but my doctors both said removal was necessary, because of squamous differentiation.
I will return to this site after my bladder removal, but welcome any comments in the interim.
Ed Barnas

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@barneythe2nd

Hello Ed:

It sounds like you have acquired a good deal of information about your condition and have made your decision based on that information. That is commendable. We all need to advocate for ourselves and learn as much as we can about our options.

I do wish you well with your upcoming surgery and I look forward to hearing from you again.

Teresa

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@kanaazpereira

Hi @palevsky,

I thought you might appreciate reading about augmentation cystoplasty in these medical journals:
https://emedicine.medscape.com/article/443916-technique
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3822349/

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Thanks so much for your support and information. I just got images sent to me on tests showing blockage and interpretation. I have seen another surgeon in San Francisco recently since I visit my daughter lives there and he is willing to give me a second opinion.
I still prefer having reconstruction but have been advised it will not be successful. I want to receive his perspective and then plan on proceeding.

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Hello Ed, the doctor mentioned that this part of the body has bothered you till you remove this bad thing, you get to remove and go for it. In the mean time you find out and choose the best option it may fit to your body. I agreed with hopeful on this. You have to find and learn the options to fit best to yourself after the removal of bladder. My sis and I were the care giver of my mother who is now 80 years old. When she learned that she had a rectal cancer she did not want to go for operations. But her doctor told her she would not survive without the removal of the bad part which is attached to rectum. With so many opinions from individual patient and good advice from the doctor she has chosen the option without bag. She went for a critical Laparascopic surgery for 7 hours and after a few days, she went to close up the bag for normal surgery for another 3 hours. Since than she survive with the best option she has chosen. She is well recovered and her scan shows no cancer cell. A big relief for us. I wish you a smooth and successful surgery. I hope you find the best options. Our thoughts and prayers are with you. Best wishes, Soul

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@kanaazpereira

Hi @palevsky,

I thought you might appreciate reading about augmentation cystoplasty in these medical journals:
https://emedicine.medscape.com/article/443916-technique
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3822349/

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@palevsky

That is very wise to collect good opinions and then make a decision based on the information. I wish you well.

Will you be seeing the surgeon in San Francisco in the near future?

I look forward to hearing from you again.

Teresa

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@kanaazpereira

Hi @palevsky,

I thought you might appreciate reading about augmentation cystoplasty in these medical journals:
https://emedicine.medscape.com/article/443916-technique
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3822349/

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I was out there two weeks ago and saw him then. I did have one image with me but he wanted to see the disc with more images to see if it was determined how long stricture was.If it could be cut out it would involve surgeon and robotic surgery. I am being told it would probably not be successful but not conclusive for me yet.

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I have an ileostomy and I will not have it reconnected. I have Lynch Syndrome which means you have an 80% chance of getting cancer. I have a terrible time changing my bag. It will not snap in easily and leaves me exhausted. I also get leaks, sometimes in the middle of the night and even in a restaurant. I changed bag brands and I think this new bag will be better. I have to set my alarm for the middle of the night to get up and empty my bag. Thus, I am losing valuable sleep time. My ulcerative colitis no longer bothers me so I am glad I had the colectomy. I will be glad of any tips anyone can provide for living with a ileostomy. Blessings to all.

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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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