Redundant / Tortuous Colon

Posted by onaquest @onaquest, Nov 7, 2018

Hello. Anyone else out there that has a redundant/ tortured colon? I was diagnosed with this a few years ago. I’m usually ok, but if I get constipated, I get sick for a week or two. Last year my gastroenterologist referred me to a surgeon for urgent surgery to remove some of my colon. The surgeon I ended up seeing (not on the recommended list by my gastro doc due to others not available for a long time) said he believed I could live with the redundant colon if I followed a low FODMAP diet. I tried the diet religiously, scientifically (I’m a scientist), and I found it’s not the food I eat that causes these bouts of constipation. The only item I’ve found that might cause the bouts is coffee every day. An occasional coffee seems fine. What has helped me stay regular in a big way is Benefiber (or any pure wheat dextrose generic) three times per day. Lots of fluid.

My gastro doc was upset with the surgeon and said I’d regret not having the surgery. He fears I will end up in an emergency situation. I have searched the Mayo site and don’t find anything about redundant/ tortured colon. Are any Mayo docs doing research or treat this condition? Anyone else suffer from this too?
Thank you! -Jayne

Yes, it contains milk. That's why I also had stomach pain, but it happens to me if I take a whole capsule, then what I do suggested by my dietitian, I open it, and for a week I take only half the powder that I take out of the capsule , the next week I take everything and I'm fine, the taste is good I put it on a toast, in cereals or in what normally you have breakfast every morning, to avoid that everything falls suddenly hit the stomach.
I feel pretty good, it has regularized my colon.
good luck.

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@tiss

I would get many more opinions before you have your colon removed. Mine was am emergency so I had 18" removed. It's been a very hard recovery and I am 2 1/2 years out.

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

Liked by tiss

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@denisep

Hello. I also have a redundant colon. I am 51 yrs and have been constipated all my life. Thought it was normal to have a bm every week-10days. as I became an adult I started experiencing excruciating pain in the abdomen. Noticed it alway happened after eating certain foods like pasta, pizza, etc. I would just suck it up and deal with the pain. I started seeing my doctor about the chronic constipation and pain. He had me try several different meds and combinations of meds. After learning that my Grandmother who died of colon cancer at age 42 (before I was born) I went in for a colonoscopy. Thats when I was told I have a redundant colon and I was probably born with it. I have been seeing a couple different specialists at Stanford GI. Had a second colonoscopy and many embarrassing tests. I just started taking Trulance and I don't think it is doing anything for me. I now have been referred to a Motility specialist and awaiting the appointment. I will also be starting my 3 round of Physical Therapy to try to strengthen my pelvic floor muscles.

I wish I had some advise for everyone on this forum because it is a truly tortuous condition to have. I can say that if you cannot find a treatment that helps, don't give up! Make a list of all your symptoms and ask your doctor. Keep the pressure on him. If he doesn't know how to treat it, ask for a referral to a specialist like a motility specialist. Please keep posting to this site so we can learn from each others experiences.

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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.

Liked by koryn

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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

Liked by koryn

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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.

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@les2436

thank you, take care of yourself, Sorry I'm so down on this illness, but I only get a few good moments every now and then, usually sleeping.

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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?

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@kanaazpereira

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?

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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?

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@les2436

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?

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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.

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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,

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@cielo

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

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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.

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@kriszill

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.

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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

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@kriszill

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.

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Hi @kriszill,

You are certainly not alone in experiencing the frustration of being dismissed by your doctors! How are you doing? Has the Miralax helped ease your symptoms?

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I am a 64 year old female. I have been diagnosed with redundant/tortuous colon and a colon full of diverticulosis. I have had three hospital visits from the diverticulosis turning to infection (diverticulitis) within a year and a half. One time it was quite bad with high temperature and the other remaining I went earlier to the ER after experiencing the same type of early pain. Most of my adult life (24 on) I always ate a diet filled with fiber….fruits, nuts, vegetables which I thought was the healthy thing. As my family is prone to colon problems I always followed this diet along with being an active tennis and workout person all my life. Because of this I believe it is partially genetic. I had a colonoscopy 3 years ago which showed a few pockets but 3 years later after my diverticulitis attacks started, my new colonoscopy showed my entire colon had diverticulosis. The last 5 years of my life have been very stressful also which maybe accounts for some of this happening?? I have found drinking at least 6-8 glasses a day of water (3 or 4 bottles), hour of fast cardio walking 3-5 days a week, and heaping teaspoon of Metamucil morning and night mixed with more water has kept me under control with no problems. Constipation is my worst enemy and will NOT let it happen! Each time I got diverticulitis it had started with constipation. The other culprit associated with my attacks is I had gone to the movie which I rarely go, and each time had lots of popcorn. I drink 2-3 cups of coffee each morning which always gets me moving and the coffee never bothers me but helps me. I have not had a bought of diverticulitis for one year now. I have worked nuts a little into my diet but I make sure just a few, chew them soooo fine and eat something else with them. Sadly, popcorn will forever never enter my diet again. If I feel a little discomfort in two particularly common areas of my lower abdomen I make sure to go soft diet and drink lots of water. It usually lets up and back to normal in hours. I live a normal active life and it is not as bad as I thought going without popcorn! My nutritionist claims popcorn is fiber but the coincidence of each time having popcorn days before my attacks scares me enough to go without! I feel good and healthy. Hope this helps. Good Luck.

Liked by cim37343

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I was diagnosed with Torturous redundant colon during a difficult scope after a very painful episode. This scope was done after I passed out from pain & then diarrhea & vomiting. I thought it was a virus because I felt some better the next morning. Then I had lots of blood during my BM so I went immediately to the Dr.. I was sent for CT scan where I was diagnosed with is ischemic colitis. I had some diverticulosis & a polyp removed. My GI told me it was a difficult scope due to to much colon. He didn’t recommend surgery. I then got Cdiff 8 months later after being given an antibiotic, clindamycin for a sinus infection. I’m always afraid I’ll need another scope & it will be bad.

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@tiss

How long ago was your resection? It can take a long time to heal from this surgery. What part of the bowel was removed and how much? I'm so sorry you are going through this. I had a resection (see my story above) and it took a good 18 months to get some sort of management going on. I've taken magnesium every day 800-1000mg for chronic constipation for 25 years. My constipation is now under control since my surgery 2 1/2 years ago.

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tiss@tiss
I have had chronic constipation since I had a hysterectomy 25 years ago. Yhe surgeon had to re-route my colon, because of all the endemetiosis inside. I have always thought he must have injured the nurves of my colon (the peristalsis nerves) and I don't have a bowel movement, unless I take something.

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