tortuous colon plus rectal and sphincter disfunction

I’m so sorry! This sounds horrible!
Colon resection is the only thing I can think of. How many drs/surgeons have you seen?

If I had your situation, I would try eating for a soft stool. I would also avoid meat, it is too hard to digest.

I can eat only about 15 close-to-zero FODMAP foods, so have an extremely limited diet, but it give me a close to "normally" functioning gut without being plagued with IBS-C. Ask me for further details if you want. I also eat almost everything well-cooked, as that "predigest" it.

I also have a very redundant colon (no twists yet) and a rectocele. A soft stool is great for these problems.

I also sleep on my left side (to help things move along), and if stool is "stuck" in the rectocle, I sit on a firm chair, cross my right leg over my left thigh and lean to the left on my left cheek. This collapses my rectocele so the rectum operates more normally. Also, no tight pants, which I doubt you are wearing.

I also take a handful of supplements, including slipperly elm (inner bark only) tea. It supports the mucosa, per reports posted on the NIH website. Adding "slip" to get around all those adhesions, etc. makes sense.

Magnesium supplements draw water into the colon, are gentle, n=and soften stool. My GI doctor recommended 250mg, or if that didn't work for me 500mg. I take something a bit less. A product called Hilma Gentle Bowel Movement Support at 174mg a dose.

Hope some of this can help --

thank you for the info. I have received mixed dietary advice. GI doctor says low fodmap, dietitian says low residue. However, Dr. says diet will have little to no effect on my conditions, dietitian says she does not have a complete understanding of my physical conditions. Dr. did not explain situation in depth, just told her it was complicated. Soft stool and weak rectal muscles result in no control so minimal fiber seems to work best but adds to discomfort. Interesting about rectocele. This is a new term for me and makes sense. Cancer in vagina with aggressive radiation caused a collapse. GI dr. has not addressed this as a cause for concern. I will ask him about it. Will try the exercises. Cant take magnesium due to left kidney failure. Thanks again for the info.

I've seen many many GI doctors/specialists over the years. Mostly they just order tests then order repeat tests. My current GI doctor who is quite knowledgeable says there is not an option for surgery due to the many abdominal adhesions from bladder removal, two hernia surgeries, volvulous removal and aggressive radiation to vaginal and rectal areas. Doctor says I should count my blessings that I am alive. I do that but have not given up hope for some physical relief.

You are dealing with a lot of unpleasant issues that aren’t easy to remedy. For the tenesmus (constant urge to have BM), there are meds that can help, both oral and rectal suppositories. If inflammation is irritating the rectal nerves, a steroid suppository can help. Meds used for overactive bladder can help an overactive rectum. Anticholinergic drugs relax the smooth muscle in GI tract, like those used for irritable bowel syndrome. If you have only seen general GI Drs, I would recommend a rectal specialist for the tenesmus and lax sphincter. There are surgical procedures that can tighten up the rectal sphincter if fecal soiling or incontinence is occurring. A rectal specialist can help you if the Kiegel exercises are not working. Keeping the stool on the firm side helps prevent incontinence but this is a delicate balance to juggle. There are extra long panty liners that cover front and back. You can get them on Amazon. I sure hope you can get some relief! You have been through so much…

wow, lots of great info. Thank you. I'm seeing my GI doctor this coming Monday and will ask him about all this. I saw a specialist for a second opinion last month and she agreed with my GI doctor that there is nothing to help me. So discouraging for me. But I have not given up. Doctor recommended against Keigel exercises. I will bring this up again.

Do you know why she recommended no kegals, please?
They’re a constant need for me.

My physical therapist recommended it but doctor said no. Didn't say why. He said I should have electrodes (that I rent) attached in 'that area' for daily muscle exercise. I did that for a while and didn't seem to have a problem with hitting the marks with little effort so that therapy was discontinued. Have not been back to PT since. I will google it and see if I can just do the exercises without guidance from physical therapist.

Have you been seeing GI physicians at Mayo? If not, I highly recommend. I went through six years of unresolved and life altering issues before I went to Mayo in 2019. They helped me 100% by resecting my intestines after an intestinal volvulus resulting in emergency surgery and an ileostomy in NYC, and re-anastomosis surgery in OKC that scarred down to a pinhead size opening. Before the big reconstruction surgery in 2020 at Mayo, I had been through hell. I just returned to Mayo June 3-15 for a two-week pelvic floor rehab program for muscle issues. I know how miserable you feel - I've been there, but Mayo has been my saving grace and answer.

I had ileostomy in 2010 and the emergency volulus surgery a little over a year ago. Saved my life. The operating surgeon said no more surgeries due to adhesions. I asked too go to UCLA or USC but found that Kaiser insurance does not refer out of their network. How did you get into Mayo?