Anyone else have a Redundant / Tortuous Colon?

I also had 18” of my colon removed 1 1/2 years ago. I wish I could say that there was a big improvement.

I tried pelvic floor PT for over a year and it did not help me. I am missing a pelvic floor muscle. So after the removal of 18” of colon and the pelvic floor lift, none of my issues have been resolved.

Hi Deedee.
Sorry that you feel very much that nothing has been resolved, but that happens sometimes, we are at the mercy of the doctors, and sometimes they are not compassionate with the situation of our problems, I have heard many times that nothing is resolved by having this operation, then I will try to avoid it as much as I can, for now with certain medications and probiotics a perfect diet, it seems that it is a little better controlled than before.
I love my family doctor she understands better how it is and the advice that has given me for now improves a little my situation, I am afraid to go back to see the gastronologists, I have seen 4 different in the time of 3 years, It is horrible that these doctors know even less than we do, all have given me different negative advice, as if my life is already ruined, and it is not true.
Anyway, I wish you the best, patience but do not let this prevent you from doing a better life, a little changed but it is your life.
Take care

Agree about the frustration with gastro docs that don't seem to know much, or care much. Same with me that my Family doc is better. But they were all wrong in advising me to eat MORE whole grain fiber. It made my life miserable, and when I stopped the whole grain regimen, many of my problems were toned down. The FODMAP diet and/or the plant paradox diet have helped immensely!

I wish you the best also, and hope you find that perfect regimen for your situation. It's taken me about a year, on and off, with many setbacks. But life is better now and I know that whole grain fiber is not my friend.

Hi @les2436,

I saw that you posted a comment after viewing the Dr. Amy Oxentenko’s video on chronic abdominal wall pain (https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/chronic-abdominal-wall-pain/).

You wrote, "I have redundant colon, in 3 areas, sigmoid, transverse, and desending . Only have Florida Medicaid, Need Help ASAP. Pain horrible, can't afford Mayo.” I know it’s disheartening, but I was wondering if you know about Mayo Clinic’s "Charitable Care and Financial Assistance” program? Mayo Clinic appropriately serves patients in difficult financial circumstances and offers financial assistance to those who have an established need to receive medically necessary services and meet criteria for assistance. You can find all the details here:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance
In the meantime, may I ask how you are managing the your pain?

The pain is most of the time horrible, doctors have me on narcotics. Which is also know to cause constipation. I did call mayo about charitable care or financial assistance, told since I have medicaid I wouldn't qualify. Only for people that have no insurance with a rare disease. Is there any other way to get treated at Mayo?

Hello @les2436

Just a thought: If you can't be seen at Mayo right now, do you live within a reasonable driving distance of a university medical school or another large multi-disciplinary medical center? If so, this would be a good place to seek a second opinion on a treatment option that might be better for you than just using narcotics. In these larger, research-oriented medical centers the doctors communicate with each other and can coordinate your care in a more efficient way.

Many of us on Connect have had either hard-to-treat or hard-to-diagnose disorders and we have found it important to be our own advocates and seek out second and even third opinions.

I look forward to you posting again and hearing how the process of finding some non-narcotic treatment is going for you.

I just want to mention that Teresa's comment here is very true. I visited a university hospital center many years ago for another condition, and they did not even bill me once I mentioned an issue with payment. They sent me a statement saying it was paid in full. It's part of their mission to promote good health in their communities and that's part of their method for accomplishing that. And, as Teresa said, they have the top experts in different disciplines and confer with each other as necessary,

I’m so glad I’m not the only person frustrated by a Gastroenterologist who is dismissive. I’ve landed in the emergency room three times with ischemic colitis attacks that occurred because of a constipated, tortuous and redundant colon. The pressure builds in my colon when the massive quantity of stool decides to move out all at once. The pressure literally cuts off the blood supply to the colon lining and some of it slips out a few hours after the main event. The pain from start to finish is horrific, with near-fainting as an added bonus. Also the tissue is quite bloody. I’m experimenting with MiraLax and diet changes, but am still in a cycle of buildup and explosion. My family has little patience because mothers aren’t allowed to get sick, don’t you know. I wish my doctor had some real solutions. I felt fine until seven months ago.

Hi. I have redundant torturous colon. For About 8 month. Hlell on Earth pain bloating etc etc. Horrible. ER 4 times. Have a great new gastroenterologist. I do miralX 2 time's a day with crolax stool softener. Been 5 days going normal now. Also have hernia on esophagus. Getting.Gi soon . Best regards. Lesley