Anyone else have a Redundant / Tortuous Colon?

@ 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.

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

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.

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.

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.

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?

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

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.

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,

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.