Tortuous colon. Surgery or not?

I share your situation, except we haven't tried the medication you mentioned. I've been repeatedly hospitalized because of my colon, diverticulitis, and two years ago a massive volvulus in my transverse colon, which is torturous and profoundly redundant. Last Aug. I had abdominal surgery to explore the outside of my colon for any trace of endometriosis, and he did an appendectomy while he was in there. No endometriosis was found, but the surgeon said he'd never seen a colon as profoundly redundant as mine. Since then I've had no abatement of my symptoms, they continue to worsen. Everything that we've tried has had minimal, temporary success, at best. As problematic as my redundant colon is, I really think removing that bowel is the most reasonable solution. As you have probably experienced, the pain is like childbirth. I'm 60 years old, I know this surgery is coming for me somewhere down the pike, and I think it's better to do it now while I'm relatively young and otherwise in excellent health and physical condition. I hope to read other people's comments on your post, as I need similar feedback.

Hi Erin. I wish someone advised me years ago to avoid surgery whenever possible. I would have lived with my fibroid tumors. I went in for a hysterectomy which usually is no problem so I thought. One week later had to have emergency bowel resection from being nicked during hysterectomy Now I am facing lifelong repercussions from scar tissue caused by surgery. Had to have 2 small bowel resections and many painful obstructions which can’t even describe. Adhesions are something I had to learn about after surgery. Try everything else possible!!!

Also look into clear passage therapy in Florida. I am still researching and our problems are different but surgery is surgery and the adhesions are something to consider.

I’m in exact place as you only they haven’t found any medication that really works for any length of time. Motegrity did for a while. Then on Bethanichol, an off label use. Problem is, they have to keep increasing dose, then side effects and diarrhea.
So, I have gotten one surgical opinion. She felt ileostomy only option as I also have slow transit small intestine and pelvic floor dysfunction. I’m getting a second opinion in May.
It’s been 4 years of misery with this and I’ve had enough. I want to travel and be able to make plans to do things. My life is ruled by my colon. I know surgery is HUGE, but I feel terrible most of the time. I want my life back. Have you been tested for motility or pelvic floor dysfunction? May want to before opting for colon removal. Exhaust all options first. Good luck!

Hi, Sally. I appreciate your thoughtful reply. I haven't had a pelvic floor study done -- did your ob-gyn do that? I've had a sitz marker study done to gauge transit .. and I have a story to go with it. My GI had me taking Mira lax and two citrucel caplets every day for more that a year when she ordered the study -- ordered because even though I have copious loose bowel movements every day, there is a trouble spot in that redundant, torturous transverse colon where some stool just lays there, so she calls it constipation. I was instructed to discontinue the miralax and citrucel for the 5 days of the study and not to take any laxatives. First day X-ray showed the sitz marker rings travel well thru small bowel; second and third days X-rays showed them bogged down in my transverse colon. By the third day I was in such miserable discomfort, bloating, grotesque distention that I cheated and ate coconut butter (a natural laxative) which prompted an enormous bowel movement. Of course the next day the X-ray showed that the markers had passed all the way through to the sigmoid colon. Because of that, my GI concluded that I have normal transit speed -- I didn't tell her about the coconut butter.
You're right, it's a huge surgery. But I completely resonate with you that we can't live our lives dictated by our colon. For me, it's the debilitating pain, which feels like stage 6 labor pains, and the specter of another 6 cm volvulus sending me to the ER. You're prudent to get a second opinion. It will give you confidence that you're doing the right thing, whatever that choice winds up being. I made a note of the two meds you mentioned. My GI gave me linzess, but it only caused me watery diarrhea.
Please post any updates if you can, and I will do the same.

Hi Yintwin,
Thank you. I have Sitz Marker and Anorectal Manometry this month. Still gathering important information but the contrast X-rays that were done showed complete emptying of the small bowel. Same situation with loose BMs passing over a cemented stool.

Linzess and Trulance also gave me watery diarrhea. I just started Mestinon last night, so we’ll see if that’s any better than the Bethanichol.
The Colo-rectal surgeon actually was the one that ordered the anal manometry, but I imagine it could be ordered by any dr. There are a number of tests that can determine it. Actually, a simple rectal (😖) exam can tell if you’re able to push, squeeze and relax muscles on command. The tests just a more definitive number to the strength and whether your brain is able to communicate with those muscles. I always just question accuracy bc I’m always so anxious and embarrassed when having them done. How can anyone relax in that situation and try to isolate those muscles and perform like a trained monkey on command? Push, now squeeze, now relax! All while a probe is up your butt and two technicians are staring at you!

It’s a relief to know there are others out there who suffer from these issues as I suspect many are reluctant to share. It’s frustrating to feel that one isn’t taken seriously & doctors say it’s your brain controlling your gut. All they want to do is perform colonoscopies. I’ve had several with no signs of disease, just told I have a torturous colon with no solutions offered. In Canada we have to wait many months before we can even be seen by a specialist and it’s even worse since the pandemic. Understandably, those with serious, potentially fatal diseases such as cancer take precedence.

After my first visit to my gastroenterologist after my colonoscopy/endoscopy she was not concerned about the tortuous/redundant colon and I replied. You do not seem to be concerned, but I AM concerned. I have increased my food fiber, water and exercise. I presently am taking MiraLAX a night now adding a small amount of organic fiber which seems to be helping. I do not want to come to the place that I do not have control and want to find a more natural approach to living with this. I take to heart all your comments, because I know someday it could be me. It may be me now and I just am not acknowledging it but time will tell. She did mention bowel transit time tests.... so what was she really thinking but not saying? So if anyone has their "best" advice for things that seem to be working long term, I am all ears. In this journey together.... some days it feels like all we have is each other... not much out there that I could find by googling it.

CT scan should show a lot. It is expensive for insurance to cover so not given freely. Ask for it.