Severe Tortuous & Redundant Colon

OMG!!! Have you sued your doctors yet?!! I am so sorry about your cancer and the treatment. You mentioned your muscle changes. I have been learning how they affect our BM's. I have smooth muscle weakness, almost no intestinal muscle movement. Mine is @ least somewhat caused from my HPTH and elevated calcium levels, for 5-7 yrs. My parathyroid glands are whacko, pushing calcium into my body when I don't need it. So, I have to have 3 1/2 of my parathyroid glands removed. No doctor ever mentioned anything about this to me and I should have been monitored for this since my celiac diagnosis. I have had CIC for 17 years. Small bowel partial blockages, 3 blockages in anus that required "digital removal ", with my finger. Been on every drug. My GI was terrific for my endoscopy that shocked me with a Celiac Disease diagnosis, I was and am asymptomatic. But when his narcissistic arrogant way of treatment was not working, he literally quit taking my calls/emails. For me, I eat a very very bland diet with little solid foods, drink meal replacement shakes (my daughter has issues too, she did all the research, so I trust the shakes). I use 3-6 capfuls of miralax to keep my 💩 runny mush-diarrhea. I was using Metamucil fiber daily, but it just makes me stopped up. I use it now, only 1-3x week, with extra miralax. I understand the pressure pain, it's terrible. It ranks up there with childbirth. Mine is usually air pressure, different than gas. I run to the toilet thinking it's 💩💩‼️, but there's a horrendous explosion of air, maybe some poop specks. I have had X-rays standing and laying of my colon every few months for 10+ yrs, my colon always (except 1x) has a moderate to heavy fecal load. I hope my story might be of some help to you. For the burning part I immediately sit on a heating pad or get in a hot bath with little water. I have also gotten over my anxiety about putting LOTS of Vaseline or hemorrhoid cream , with glove on, up my bum.

I'm reading a lot of good info on this site. I had a failed colooscopy, 2 failed barium enema procedures, severe rectal bleeding, failed rectal endoscopy, repeated endoscopy with mini-equipment and was then found to have tortuous colon (duh!). A prescribed high fiber diet resulted in more misery, 15 or more BM's a day. Carried a bedpan in the car which I used frequently. Had emergency surgery for intestinal volulous and blockage. Prescribed liquid diet gave me burning acidic diarrhea. I previously had aggressive radiation for a vaginal cancer and my rectum was burned and the muscles are impaired, some overly strong, some very weak. Low fiber diet seems helps to minimaze BM's but get a lot of pressure/discomfort. Doctors say there is nothing they can do because of massive internal scar tissue/adhesions. Online diets are conflicted. I need help!!!!!

I have basically the same issue—a colon that is twice as long as it should be and it’s severely twisted. I alternate between constipation and diarrhea. My GI doctor has not been able to guide me as to whether or not I should be eating low or high fiber food, which makes my condition even more stressful. Any relevant comments would be appreciated. I’m trying to avoid a Colectomy.
Thank you.

Are they different from GI doctors?

I have basically the same issue—a colon that is twice as long as it should be and it’s severely twisted. I alternate between constipation and diarrhea. My GI doctor has not been able to guide me as to whether or not I should be eating low or high fiber food, which makes my condition even more stressful. Any relevant comments would be appreciated. I’m trying to avoid a Colectomy.
Thank you.

I am so sorry. I know this conundrum well. I think I have tried everything. High fiber creates a very very painful and uncomfortable build up of gas as the twists and turns essentially stop all motility at that point and nothing gets through until days later it finally "unkinks" and I have a two-three day purge of diarrhea and vomiting. Then it starts all over again. Miralax does the same thing for me. I hope you find relief.

One surgeon indicated that my hemoglobin level is WNL with a GI bleed and I’m asymptomatic… but the wretched vomiting that I experienced was dismissed. The hiatal hernia is VERY uncomfortable now. And the belching I’ve experienced is difficult at times even with omeprozole bid. I’m being monitored also by a hematologist and I’d have to continue with iron infusions if needed. The many years of dealing with constipation contributed to the hernia. It’s pressing on my lungs and I’m asthmatic and wheezing and SOB occurs. The whole mess has robbed me of my quality of life. The 2nd surgeon didn’t see that ulcers were noted on the endoscopy and dismissed that the procedure was technically complex and difficult due to the abnormal anatomy of my upper GI. Hershey Medical Center is a 1/2 hour away and I’m in the Penn State Health System. Even went with a new PCP because the undiagnosed anemia began in early Fall of 2023. The pulmonologist I saw on 2/28/24 saved my life