1. < Colorectal Cancer

I want a colostomy after having had a ileostomy reversal

Posted by jlind12 @jlind12, Jun 1 3:02am

I had colorectal cancer in 2003, had surgery where they removed 18” of large colon and replaced my rectum. I had an ileostomy for 8 months, then a reversal. I had two rounds of chemo and one round of intensive radiation therapy. I have suffered with worsening constipation since two years after the surgery. It’s now 2024 and I have used and tried every drug on the market with little to no relief. Two years ago I was diagnosed with a neurogenic bladder and use intermittent catheters to empty my bladder. I was told that it was a result of the radiation treatment that affected the nerves in my spine. I believe this is also the cause for my lack of motility in my bowel as well. I have tried Motegrity to help with this, but it’s not really helpful and it’s very expensive. Has anyone ever decided to go back to a colostomy. I’ve spent so much time in my windowless bathroom and I need a life. My surgeon says there’s nothing wrong with my bowels, but he’s only seeing them through the colonoscopy. The pipes may be perfect but if the pump doesn’t work, nothing works! Help

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

Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 13 7:39pm

@jlind12, I added your discussion question to the Ostomy support group as well. Is your surgeon recommending against the colostomy?

REPLY
mallika58 | @mallika58 | Jun 14 5:28am

My wife is a CRC patient. After multiple surgeries and radiation to rectal area she suffered with constant need to go to bathroom. It was extremely sad situation, running to the bathroom every 15 mts to half hour.
Due another associated reason she had to undergo colostomy in Feb 24. This has made a huge difference. She visits bathroom about twice a day to empty the pouch , which is a simple process. No restrictions on food either.

REPLY
cvestor | @cvestor | Jun 14 9:50am

No I am not a health food nut but look into foods that can help move your bowels. Many a drug is developed from ingredients found in food do a google search look at mother nature helping you out

REPLY
verol65 | @verol65 | Jun 25 9:06pm

Have you consulted with a clinical dietitian/nutritionist? Do you know how to balance soluble and insoluble fiber? Do you hydrate enough?
Some people find the I Love U massage useful. Others prefer to take psyllium husk daily.

REPLY
jsindc | @jsindc | Aug 31 3:45am

I had a urogynecological surgeon tell me that that might happen to me - terrible constipation or leakage because nerves were cut. That I should get colostomy. Having an illeostomy reversal might not be good and bowel function due to nerve damage won't work. Maybe you should think about anal momentry test and urodynamic study to test everything? Another offer by urogynecologist was sacral neuromodulation for catheter issue. I self catheterize. So the sacral stimulator might decrease the amount of time having to self catering although it probably wouldn't completely solve the issue. The colorectal surgeon said the sacral neuromodulation may help the BMs too.

REPLY
sansa | @sansa | Oct 21 7:18pm

Oh my gosh, I can relate to you. My lower colon was damaged from chemo & radiation. I have some issues with my loop stoma, but compared to what I went through using my colon, it’s a walk in the park. My only gripe is that I wish I had my ileostomy done much sooner!

REPLY
verol65 | @verol65 | Oct 22 6:41pm

@jlind12, has anything changed since you posted this? Have you made a decision?

If you had a low anterior resection, you might want to join Low Anterior Resection Syndrome groups.
Maybe consulting with a clinical dietitian would help.

REPLY
jlind12 | @jlind12 | Oct 23 10:07am

Not much has changed and there are no plans for surgery. I didn’t know there was a Low Anterior Resection Syndrome group. I would like to join it. Where do I find it?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 31 4:01pm
In reply to @jlind12 "Not much has changed and there are no plans for surgery. I didn’t know there was..." + (show)
@jlind12

Not much has changed and there are no plans for surgery. I didn’t know there was a Low Anterior Resection Syndrome group. I would like to join it. Where do I find it?

Jump to this post

@jlind12, you may wish to join these discussions:
- Dealing with LARS (low anterior resection syndrome)
https://connect.mayoclinic.org/discussion/dealing-with-lars/
- How long between LARS, stoma and reversal for you?
https://connect.mayoclinic.org/discussion/how-long-between-lars-stoma-and-reversal-for-you/
See all: https://connect.mayoclinic.org/group/colorectal-cancer/?search=LARs&index=discussions

REPLY
jlind12 | @jlind12 | Nov 22 9:34am

You’re absolutely right. I’m sorry about my outburst. I got so frustrated with the constant constipation that I assumed having a colostomy would be the answer and never considered the difference between the colostomy and ileostomy. Since the ileostomy is so far up, the stool is very soft, almost watery. I understand the drip, drip that comes when you’ve overdone the Miralax or laxatives. It’s another frustrating battle. Someone on this site recommended watching “your friendly proctologist” on YouTube. He discusses hemorrhoids but I’ve learned a lot about how and what to eat to keep your stools soft and consistent. I’ve learned that I’m eating all wrong (for me) and I’m feeling better and managing (most weeks) to keep constipation away. Good luck!

REPLY
Please sign in or register to post a reply.