This is true. All they tell you is to take Metamucil/Citrucel, and it takes time. I went to a bowel control clinic at University of Michigan about a 15 months after surgery. This is not the hospital I was treated at, and I found it by accident online looking for solutions. The staff there was very helpful. The doctor ordered a couple tests Anorectal manometry, and defacography, which measure the strength of your sphincter muscles, and how well you are able to hold stool. He also ordered pelvic floor therapy and meeting with a dietician.
His recommendations based on my tests were to take miralax daily, enemas, or suppositories. The goal was to empty my bowels at one time to avoid running to and from the bathroom all day. The pelvic floor therapy was helpful, as the therapist does stretch you colon to help hold more stool. The dietician had me try a low roadmap diet. It is restrictive, but did help me figure out what foods may be an issue.
My problem like many was clustering not so much diarrhea. I had to do an tap water enema for one of the tests and felt pretty good all day. I have been doing them daily since. I felt the miralax would loosen my stool and I would not know when I would need to go. With a daily enema I can be done in 30 minutes and I empty enough of the lower bowel to last until the next morning. And it is done on my timetable. Since doing them, I can eat pretty much what I want and when I want. I have stopped taking any meds (citrucel, questran, immodium, lomotil, etc) and my bottom feels better. I have also been able to gain some of the weight back that I lost during treatment, not to mention the stress of always worrying about an issue to arise. When I told my surgeon I went to the clinic and what I was doing he was fine with it, but didn't ask me many questions. When I met with my survivorship counselor she thought it was a great idea and was going to recommend to other patients
It would be helpful if colorectal surgeons had more answers or at least a staff that is educated and willing to think outside the box. The Ostomy nurses are great, there needs to be more help for those without a rectum but no stoma. Some do really well without a lot of help, but the change in our anatomy will cause issues. There has to be more than just take Metamucil and give it time.
If the University of Michigan has a bowel control clinic, maybe there are other hospitals that do as well.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6