Anyone else have a Redundant / Tortuous Colon?

I’ve been through ALL that. That’s why I took it upon myself to figure what I can & can’t eat. Everybody’s different, I can’t eat meat…(except fish & ground meat) I am a MEAT lover, it sucks…but, you get used to it. Not a big fan of fish…but once in a while I have it. Sometimes I don’t have to “eat” anything…if I wear something that’s snug AT ALL around my waist / mid-section, there will be hell to pay. Definitely not worth it.
What I really don’t understand, is how this happened. I always ate what EVER, but I never left home w/out Imodium. Always had diarrhea. Then everything changed…quite frustrating, especially for my family…since I can’t eat, I don’t cook (much)
C’est la vei ?

I have had IBS-C issues for as long as I can remember, but about 7 years ago they became chronic to the point where I can go a week (or more) without any bowel movement if I'm not taking laxatives. I have had dozens of tests, and the only useful information I have received so far was from a visit to the Mayo clinic in Rochester a little over a year ago, where they discovered I have a "highly tortuous colon" and could barely complete a colonoscopy. The recommendations at that time included increasing my fiber, which doesn't help at all. Other tests have also revealed that I have a partially prolapsed lower colon, but not to the point where surgery would be a good idea. Taking fiber supplements makes me extremely bloated and becomes unbelievably painful, and Miralax makes me sick to my stomach and doesn't do too much to move things along. I've tried different things with my diet, and right now, I mostly eat white rice (brown is too hard to digest), vegetables, and small amounts of protein. I feel like i'm going a little crazy trying different things like eliminating dairy or other food restrictions, but I don't know what else to do. I completely avoid gluten. I've been very active my whole life...have run marathons and done lots of strength training and different types of endurance races, but recently I don't have the energy for the types of training that these events require. @karena65 Do you have a resource that you can share on the whole plant diet? Is there any other advice anyone can share?

Hi Amy. I hope this gets to you, as I see your post was made a while ago. I have struggled a long time with the same symptoms. I have had several colonoscopies, a few polyps. No one has said I have a redundant colon but I’ve always wondered. My very first colonoscopy was done when I was in my early 30s because of symptoms. My GP did it (not sure that was wise) and said things were fine. As I left the exam room, I heard him say to the nurse, “That’s the longest colon I’ve ever seen.” I was young and didn’t think to ask any questions. So 35 years later I’m in bad shape. I saw an Australian doctor who suggested I have a SIBO test (small intestine bacterial overgrowth). I came up very high in SIBO, lots of bacteria. I follow a FODMAP diet and it’s been very helpful. Has anyone else in this group had that test and gotten those results? I also agree with the benefits of self discipline as an act of self-empowerment and not deprivation. I had a bout of symptoms recently and it was due to eating a larger portion than is recommended. I have experienced unintentional weight loss which is ok but not if I lose anymore. I’m a coffee drinker and I know I need to cut back, but all in good time. This is long, but it was a long hard road that got me here. Bless you all for sharing and I’d love to hear back from SIBO survivors and FODMAP followers. Thank you 😊

In response to: sickofbeinsick1. AKA Tina
It's good to hear you found foods that agree with your situation., although you say you can't eat I'm still usure about the fiber/bland choices to make.
With a very distended belly and a lot of pain with ANY pressure on it, finding loose underwear that doesn't cause pain but stays up, or even my pants is a challenge. I assume my constipation problem is my redundant colon and intestinal adhesions, but have yet to find a gastroenterologist to discuss it.
May I ask how you (or others) deal with this, if it is at all similar to my issue?

In response to: sickofbeinsick1. AKA Tina
It's good to hear you found foods that agree with your situation., although you say you can't eat I'm still usure about the fiber/bland choices to make.
With a very distended belly and a lot of pain with ANY pressure on it, finding loose underwear that doesn't cause pain but stays up, or even my pants is a challenge. I assume my constipation problem is my redundant colon and intestinal adhesions, but have yet to find a gastroenterologist to discuss it.
May I ask how you (or others) deal with this, if it is at all similar to my issue?

I TOTALLY get that! I’m 5’ 2” , I weigh 130, I have to wear maternity underwear. As far as “clothes”, I wear mostly moo moos “sundresses” or anything like that. I can’t wear anything snug at all. If I put on shorts or anything that meets my middle section “waist”, within a matter of minutes, I HAVE to take them off because it starts my stomach pain. I know it sucks!
It’s quite frustrating, especially if I’d like to go out & look decent. It has to be a dress….God forbid go out to eat. My GI for 8 years had me on a trial & error diet…in retrospect, I should have gone elsewhere. But she’d tell me stop dairy, no fried foods…yada yada. These were things I’ve eaten / drank all my life. I don’t know what your besides “long tortuous colon”….that’s what they told me “but it’s nothing you’ve done”. But I found out after years of CAT scans, ultrasounds…nobody EVER found anything until my GI of 8 yrs told me, “all your gut issues could be caused by my hip implant, & Not a Dr. In the world would admit it”. That was my last visit with her. I got REALLY sick…bloated up to 170 lbs. got hip rev, stayed on soft foods, am back to normal weight, but STILL can’t wear normal clothes!
I feel your pain & discomfort. It still flares up now & then, even if I’m not eating…I have noticed that if I get really stressed, it can happen. It hurts like hell. 🤷‍♀️
I’m pretty sure I posted b4 what I “eat / drink”…. Any juice, prune, V-8, water water water, potatoes, green beans, soup, protein shakes, milk shakes….& sometimes an ounce or 2 of Jagermeister can help….not always, but more than not. That’s just me. Can’t wait til I can wear normal underwear / clothes…but at this point, I’m not holding my breath.
Good luck to you 🙏

Hi, Amy – I’m not sure if you’ll get this because you wrote your message 3+ years ago. I could’ve written it myself! You and I are in the exact same boat and I have never read anybody else’s situation and had it be as similar to mine. I am also a runner, long distance, and discovered recently that the only thing that allowed me to do well after eight or 10 miles was if I restricted my diet to the MOST bland of the low FOD map and gluten-free foods hard-core for about four days prior to a race and I would do a big clean out with a prescribed laxative, the kind they use for colonoscopies, the night before or two nights before the big run. That was such a wonderful discovery because it allowed me to run long distances and not have any problems. I haven’t done it for a little while and I think it’s causing problems. I think I need to do a clean out every couple weeks just to feel good, but I’m not sure if there’s any harm in that. I am on Motegrity for my constipation which seems to be helping but I still have so much gas and discomfort! I also have SIBO and have had to do several rounds of antibiotics. I am on a low FOD map diet pretty much all the time, avoid garlic, onions, and artichokes like my life depends on it, I’ve been gluten-free for the past eight years, and am mostly dairy free but have cheddar cheese a couple times a week. I’m starting to think I might have to give that up as well. My one and only really big vice is red wine. I drink it every day, and usually two glasses or more. I’ve never read anything about that affecting my IBS but I have to think it might. I try to drink a bunch of water to compensate, especially when I’m training. I can’t even consider something like fiber pills. Metamucil made me feel like I was dying. I am trying to figure out if I could do a hysterectomy, which is warranted for other reasons, and if that would help my colon issues. I literally dream of having part of my colon removed because I’m so tired of dealing with it on a daily basis. It’s nice to know that other people are suffering the same way I am; that sounds cruel I know, but it is true that misery loves company and I hate feeling like the only food-deprived, utterly uncomfortable, bloated and gassy freak that I feel like most of the time. I hope your issues have gotten better in the past few years and would love to know any tips that you have discovered if so. Thanks!
-Elizabeth