Anyone else have a Redundant / Tortuous Colon?

Hi there,
I just found out I have this too. For the past few years I have had a terrible time digesting anything. I’m hardly ever regular. It’s either constipation or diarrhea. I had my gallbladder taken out in 2021 and it has just gotten worse. I also have other medical issues but this one hurts every day just like my failed back surgery. I felt it was important to let you know you weren’t alone. Kind regards.

Have you thought about going to Mayo? I asked because you will need a focused group of specialists I think. I hope you find help.

Hi,
I got a great tip from another woman thro Mayo chat with redundant colon. It's PHYSICAL therefore advice about fiber, laxatives etc. needs to fit vs taking IBS (doesn't show a close relationship to redundant colon) or FODMAP or constipation advice without testing. For me psyllium husks and oatmeal bind me up. I come from permaculture organic gardening and Naturopathic Drs so have avoided laxatives both medical and natural because all say don't use longer than a week unless recommended by a doctor. Also at 71 I don't plan on surgery and haven't even looked into it. My last colonoscopy was great. My gastroenterologist had me go with him un-sedated and it was great. On a TV he showed me where the very tight folds were to keep my longer than usual colon in the space. Being a farmer + having had biology classes I was game. Pain - I have had a child naturally and been in a near fatal auto accident so this pain was minimal and really only when he went around a bend. Good luck with management or other options you choose but we need to keep our longer pipes consistently moist for easy evac.
@Farmer

Hi. I have IBS C and take Amitiza. I have a tortuous colon as well. Mine must be less severe bc I was never told surgery. I have hiatal hernia too. I think the tortuity causes me pain and makes it horrible to be constipated. I switched from Linzess to Amitiza.

I just made it to Rochester last night barely…
I am suffering terribly trying to not take medication to do testing…
I have a ton of tests the next few days and anticipate next week because I don’t see the GI until Friday. On night 5 of no sleep tonight. It is so cold here!

Les, Did it take long to get GI appointment in Rochester? Good for you for going!!
I encourage you to “hang in there” with taking tests and doing what they ask.
Stay in and warm in hotel.
I understand what you are going through but this could be the best thing you have done by seeing best doctors!
Stay positive. Sending prayers for you.
Babs

Sorry I am so tired and not cognitively functioning well. December 6th is when I submitted my information. I can’t wait to feel okay. This is terrifying.

For my adhesions all the GI Drs. argued with me the lap for endometriosis wasn’t a big enough surgery to cause adhesions. So, it was years before the last surgery. I wonder about the resection of colon if that would work because I don’t want to be on a bag system. I also wonder about nervous system disorders too.

After almost 3 years of undiagnosed pain, seeing four different gastroenterologist, having my gallbladder unnecessarily removed, losing 17 pounds, finally after a colonoscopy, it was discovered that I had a redundant torturous: with idiopathic chronic constipation. Before the diagnosis of IBSC was, I believe, just thrown out there because they had no idea what else it could be, my internist, who has Crohn’s disease is very sympathetic and educated for problems with the colon. At age 71 I’m not a good candidate for surgery so I’ve tried desperately to control this myself. First of all I think everyone’s condition is different and what works for one may not work for another . However, I admit I have picked up tips of what to do and what not to do on this support system. One thing I have found is I cannot have a completely empty stomach and I cannot have a two full stomach. Otherwise I’ll become very bloated which is painful . I always managed to eat something very late at night sometimes in the middle of a night maybe a cracker or a half a banana so that I don’t wake up with a totally empty stomach. I am also using lactulose 10 mg. It was recommended that I use it twice a day but that was too much for me so I use it once at night right before I go to sleep. Since anxiety and stress is a big trigger for me. I use a cannabis product to relieve my anxiety which in the end helps my colon. I hope these suggestions help someone. I’m amazed that I have had constipation all my life, even in childhood and no one ever thought to check my colon. Evidently this is a genetic factor that I was born with. I hope others find some relief as I did. I have just settled into the realization that I have a condition that can’t be cured. I have changed my living situation, my physical activities, my eating habits, my social activities to accommodate this condition. my wishes for others not to give up and keep searching for the routine that’s good for you

I was diagnosed with it at the beginning of November. My GI Dr has not been much help, I've done some research. I have an appointment with a new GI Dr, who specializes in IBS and tortuous colon. I'm also looking into holistic Dr and medicine