Anyone else have a 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

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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.

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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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tiss@tiss Where do you get the 800-1000 mg. of magnesium?

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@ onaquest. I posted a long reply to you yesterday. I see lots of posts about redundant torturous colon, but don’t see mine. Maybe I did it wrong. I just did a regular reply & didn’t use an @. I need to be in in the conversation badly. I even saw there was. FB Page. I have this & was diagnosed a year & a half ago during a difficult colonoscopy. I had a horrible episode of ischemic colitis. I got better from that, but not normal. Then I had a horrible life threatening case of Cdiff from antibiotics ( clindamycin), given for a sinus infection. I almost didn’t take them because I have a medical background & knew it was possible, but they insisted that I needed surgery & that might help me avoid it. Well, all it did was almost kill me. I had 4 relapses before an FMT saved me. I’m 6 month out from that, but between that & my long colon I’m always having trouble. I’ll have costiipation & then take miralax recommended by my GI & I take fibercon. When the miralax kicks in I’ll go too much. Almost all foods hurt me. I eat soft. I also have diverticulosis. I don’t know if I can do the same as all of you do because of the Cdiff & my transplant (FMT). I would like to be able to talk about it & know if anyone see my posts. It seems like when post in here no one sees it , or my posts are sent to another group that I can’t find. I’m miserable.

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@ahcasey13

I’ve had horrible abdominal pain, bloating, diarrhea, constipation, vomiting and bleeding for years (16 years). I’ve had many colonoscopies, endoscopies, CTs, MRIs - basically you name it I’ve had it done .. 3 colonoscopies over the past 2 years multiple malignant carcinoid tumors were found and removed and I was told “don’t worry it’s a slow growing cancer”. My pain and symptoms never eased so for 16 years dr after dr told me the symptoms were because of cysts on my ovaries because of PCOS and because I was over weight. The gastrointestinal dr last year (I have since changed) neglected to tell me that my CT showed that I had football size masses on both ovaries - so I had a hysterectomy. Still my symptoms didn’t ease. I gave up and decided I just had to live with the pain and try to deal with it - I have extra clothes at work, in my car, in my purse. Fast forward to fall 2018 I begin fainting and losing weight I’ve lost 70lbs in a years. I had my 6th colonoscopy and endoscopy in 3 years last week (my blood work shows my iron, vitamin D, and vitamin B12 levels are depleted) my new gastrointestinal dr couldn’t complete my colonoscopy even though I did a 2 day prep. Endoscopy shows that my esophagus is constantly spasming and the opening to my stomach is small. Even without completing the colonoscopy it showed I have significant inflammatory bowel disease, an extremely “torturous” and spastic colon, severe IBS, and possible Crohns. I’m exhausted from the anemia along with all the colon issues and just being sick all the time. But mostly if drs would have taken the time to listen instead of just judging me as a “curvy” PCOS woman I could’ve gotten help before it got to this point. I don’t know where to turn now.

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I feel your pain. I hurt everyday. Can’t enjoy any good foods. I know some of these Drs think it’s just a part of aging. I’m 72 but I’m still a person. I had Cdiff this year & 4 relapses so in afraid of lots of things. I have a great GI & he probably saved my life with an FMT transplant. I’m either pooping too much or not pooping. It gets old. He said use miralax & I do when I have not pooped in a couple of days but it takes 3 days for it to work then I go 3 or 4 times a day for a few days. I don’t know what to do.

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@manierob

tiss@tiss Where do you get the 800-1000 mg. of magnesium?

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I use Natures Way magnesium complex. I buy them from Vitacost.

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@deedee1837

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

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Deedee, It took me a long time to feel like I was as recovered as I was going to get. Mine was an emergency surgery and the ascending colon was taken out including the ileocecal valve which has caused chronic SIBO. I take Xifaxan on a daily basis. Have you been checked for SIBO? Many people with chronic constipation have it.

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