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Ostomy: Adapting to life after colostomy, ileostomy or urostomy

Posted by Colleen Young, Connect Director @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?

Interested in more discussions like this? Go to the Ostomy Support Group.

mswilde | @mswilde | Sep 27, 2023
In reply to @morironman "Ileostomy in August ‘23. Doing great so far. No more incontinence and all the infection was..." + (show)
@morironman

Ileostomy in August ‘23.
Doing great so far.
No more incontinence and all the infection was removed and treated with a month of antibiotics.
They taught me well at Mayo Rochester. I didn’t need a home nurse for the ostomy or the administration of drugs thru a picc line.
Doctor Boyd Viers

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I’m happy that you were able to adjust so well. I don’t know if I would have adjusted quicker or easier if I had been told that the ileostomy was a possibility, but waking up to find it was a bit harrowing for me. But also, like I said before, I’m ok with it after all because knowing that my only other option was death isn’t an option at all.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 1, 2023
In reply to @mswilde "👋!! I’ve just joined this group but I’ve had my ileostomy for 5 years now. I’m..." + (show)
@mswilde

👋!! I’ve just joined this group but I’ve had my ileostomy for 5 years now. I’m only here because I’ve never known something like this existed and I’m tired of talking to myself about the issues I face but only because my PCP doesn’t seem to know what to say or where to direct me. I’m seeing a new doctor in a couple of weeks who specializes in chronic issues so I’m crossing my fingers, toes and eyes.
I’m 67 and have been retired since my surgery but not because of it. I was just at a juncture in my life where I could, so I did.
If everything goes somewhat to plan over the winter months I hope to go back to work in the spring. Being retired has become boring.
I’m wanting to lose weight, the meds that I take are adding to my weight gain and having an ileostomy is difficult because my body has to fight for nutrients etc… I truly feel like I’m losing in a game of tug of war and I’m looking for help, help that I hope I can find with a new doctor.
I also know I will have my ileostomy forever along with my picc line and it didn’t cause me much grief except when I first woke up from the surgery and the first couple of months but when I could finally accept that I’d be dead without them it made it easier to deal with. I know how hard it is to deal with the whole situation especially when it’s supposed to be temporary, which mine was, and then became permanent… I just have to remind myself of that fact from time to time when I feel down about it.

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Welcome @mswilde and all the new ostomates. I''m glad you found the Ostomy group here on Mayo Clinic Connect and have...well... connected.

In addition to writing on this forum any time and any day, there is also a monthy Zoom ostomy support group I'd like to let you know about. hosted by Mayo Clinic ostomy nurse Candy Boyes, R.N., RN-BC, C.W.O.C.N. All welcome.

The meetings are held first Tuesday of the month from 4 to 6 PM Arizona time. The next meeting is next week Oct 3. See details here:
https://connect.mayoclinic.org/event/ostomy-monthly-support-group-6/

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 5, 2023
In reply to @harryd "I am new here so this is my first post. I had a total colostomy 2..." + (show)
@harryd

I am new here so this is my first post. I had a total colostomy 2 weeks ago today (ulcerative colitis) and I feel better than I had in months, I am able to get out and walk several times a day and almost back up to 10,000 steps per day and go for rides in the country looking for wildlife to photograph with my wife. Truly glad I had the surgery, it is giving me my life back, I had 4 months this year I could not leave my house because I was having 30 or more sudden urge BM's per day, now I am free again.

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@harryd, you've had your ostomy for a few more weeks now. So glad you have your life back. What is one tip that you would offer someone else who has been told they will need an ostomy?

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1 reply
Twocoastsm | @marlenec | Oct 5, 2023
In reply to @hanseron "Total Colectomy.  The attack happened so fast that I didn’t have time to worry.  I was..." + (show)
@hanseron

Total Colectomy.  The attack happened so fast that I didn’t have time to worry.  I was rushed to the hospital and surgery was performed within hours.  Luckily, I had a great GI surgeon who had previously performed the operation successfully.

 I was in the hospital for about 3-4 weeks and at home recovering for at least a month and a half.

 

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I just wanted to say that my late husband went through an emergency total colectomy at the age of 70. He had lung cancer and apparently the chemo he received was killing off his colon resulting in sepsis. Fortunately the surgeon (who looked to me as if he was 12 years old) in the hospital that evening was the chief of trauma surgery and after a lengthy procedure (and I was told that due to my husband’s cardiac issues the surgery was high-risk) he saved his life. It took a lot of adjustments to find the right apparatus - and luckily there was a wound care center and ostomy specialist to help with that - but we eventually got it down to a science. And I say we because due to my husband’s initially weak condition I had to help a lot. Sadly his cancer took him two years later but he adjusted to the ostomy quite well all things considered and I hope that you continue to be in good health.

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harryd | @harryd | Oct 6, 2023
In reply to @colleenyoung "@harryd, you've had your ostomy for a few more weeks now. So glad you have your..." + (show)
@colleenyoung

@harryd, you've had your ostomy for a few more weeks now. So glad you have your life back. What is one tip that you would offer someone else who has been told they will need an ostomy?

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For me it gave me my life back, fighting UC and meds not working I had no choice, I have osteoporoses from long term steroid use and now I am steroid free and feeling better than I have in years. Having to deal with a pouch is not as big of a deal as I was worried it would be, it takes 5 min. to empty 6-7 times a day and every 4 days about 20 min. or so to change the bag. Makes me wish I had done it several years ago. I can travel again, go out walking, ride in the truck and do bird watching and wildlife photography none of those could I do for the last 7 months.

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greg68 | @greg68 | Dec 29, 2023
In reply to @mlmcg "If you have chronic diarrhea run, do not walk, to see your doctor. Over the counter..." + (show)
@mlmcg

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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I have been to 4 different gastrointestinal doctors between Texas and now Tennessee. None can tell me why I have had chronic diarrhea for 21 years now. I was stage 3 rectal cancer in 2003, but they have seen nothing since in many colonoscopies. I have tried diet, pelvic floor specialist, Vibrezi, steroids, etc. Nothing stops it controls it. I mix 4 different prescriptions now to provide a modicum of relief. The last specialist didn’t look at any MRI, or anything. He simply said , “ Nothing else anyone can do. You must have a colostomy.
Is there no one out there who can at least try and identify what is going on with me? I worry as I age, it is only going to keep getting worse. I am now on disability for this and for diabetic complications.
Any advice would be gladly accepted. Dark , bleak thoughts are seeping in , more and more!

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2 replies
ams | @ams | Dec 30, 2023
In reply to @greg68 "I have been to 4 different gastrointestinal doctors between Texas and now Tennessee. None can tell..." + (show)
@greg68

I have been to 4 different gastrointestinal doctors between Texas and now Tennessee. None can tell me why I have had chronic diarrhea for 21 years now. I was stage 3 rectal cancer in 2003, but they have seen nothing since in many colonoscopies. I have tried diet, pelvic floor specialist, Vibrezi, steroids, etc. Nothing stops it controls it. I mix 4 different prescriptions now to provide a modicum of relief. The last specialist didn’t look at any MRI, or anything. He simply said , “ Nothing else anyone can do. You must have a colostomy.
Is there no one out there who can at least try and identify what is going on with me? I worry as I age, it is only going to keep getting worse. I am now on disability for this and for diabetic complications.
Any advice would be gladly accepted. Dark , bleak thoughts are seeping in , more and more!

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Have your doctors done biopsies? That would give your doctors an idea of the status of your colon? You will still have the diarrhea with an ostomy but at least you won't have to rush to the bathroom or wear adult diapers. We have a great ostomy group here in Tucson. The members are so supportive. Hope you find out some answers soon. Take care, Annie

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kenc | @kenc | Dec 31, 2023

Maybe see what a Infectious Disease Doc can ascertain about your condition.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 7 8:04pm
In reply to @greg68 "I have been to 4 different gastrointestinal doctors between Texas and now Tennessee. None can tell..." + (show)
@greg68

I have been to 4 different gastrointestinal doctors between Texas and now Tennessee. None can tell me why I have had chronic diarrhea for 21 years now. I was stage 3 rectal cancer in 2003, but they have seen nothing since in many colonoscopies. I have tried diet, pelvic floor specialist, Vibrezi, steroids, etc. Nothing stops it controls it. I mix 4 different prescriptions now to provide a modicum of relief. The last specialist didn’t look at any MRI, or anything. He simply said , “ Nothing else anyone can do. You must have a colostomy.
Is there no one out there who can at least try and identify what is going on with me? I worry as I age, it is only going to keep getting worse. I am now on disability for this and for diabetic complications.
Any advice would be gladly accepted. Dark , bleak thoughts are seeping in , more and more!

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@greg68, this chronic diarrhea is obviously affecting your quality of life, both practically and emotionally. If you'd like to consider a second opinion at Mayo Clinic, you can submit a request here: http://mayocl.in/1mtmR63

I can understand why you're additionally concerned about the potential health complications that can develop as you age too. Have you considered a colostomy or discussed the potential health benefits of having one over your current situation?

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cvestor | @cvestor | Feb 14 9:58am

Am being pushed to have a bag hanging around my waist No help form doctors to talk to a nurse or????????? about this issue. to get some answers to questions. Just this is it lady take it or go die And how does one have this 5 gallon pail hanging on your waist & take care of 70 animals plus ride a horse competitive. No help at all from medical staff just have this done and go away CVestor

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