Ostomy: Adapting to life after colostomy, ileostomy or urostomy

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.

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.

@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?

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/

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.

It’s been a couple months since Ileostomy.
I’d do it again!

👋!! 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.

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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@cyngirl1
I know you posted this a few weeks ago, but if your output is still really loose, or even occasionally, I’ve found these work great. The plus is I don’t have to take a pill or drink anything. You just drop one little packet into your emptied pouch. I found it online. Good luck!