Anyone else have a Redundant / Tortuous Colon?

To: sickofbeinsick1 AKA Tina
Thanks for the details although you may tire of reciting them as I am of repeating all my symptoms and "issues". I have a few more issues than you have, but I will spare you. I haven't had a hip implant, however. My issue is serious weight and muscle mass loss, not gain.
A few of your ideas give me hope and if you have time, I'd like to hear more . . .
1. Maternity underwear? Like you, with any pressure anywhere on my trunk, the usual pain increases quickly so I limit my time in public where I try to look presentable. Can you suggest any online sources of big, stretchy maternity underpants that don't fall off? How do yours stay up? Stretchy throughout? Although I am 5'4" (was 5' 9" before compression fractures) and 103 lbs, my bloated tummy is VERY large.

2. Protein shakes/powders? - I'm new to protein shakes but bought some soy milk powder to mix with water, peanut butter, maybe a frozen banana and some dates but I think there are higher protein ingredients. Any suggestions?

It sounds like you have made a LOT of progress. Normal underwear and nice clothes may well be in your future!

Hold on everyone….I fear another “shutdown” may be in our not too far off future.
God help us all

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, Suz– I just wanted you to know that I also came up with the SIBO being high on my test and I’ve had to do a couple rounds already of the antibiotic that addresses it. I also have a tortuous and redundant colon, and follow the low FOD map diet. I’m gluten-free and mostly dairy free. I am 51 and have been doing that for several years now. It really feels crazy restrictive and what frustrates me even more is that I still walk around feeling bloated and gassy every day. I’d be willing to give all that up if it fixed it but it doesn’t seem too. I am on Motegrity which definitely helps with my constipation, but not the gas. I hope your situation has been improving and if you have any tips, I would love to hear them! Thanks!
-Elizabeth

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

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’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 ?

Thank you so much for responding and sharing with us 😊 Keep us updated on your progress, what is helping you and what isn't. I'm going to try this 💛

Sure. For breakfast, I usually have a small bowl of
Cracklin’ Bran cereal (my current fav! Ok as it’s oat bran), cup of coffee and white grape juice. Lunch smoothie with fruit, milk, yogurt, protein powder. Crackers and cream cheese dip. Dinner usually chicken or seafood grilled. Potatoes. Grilled veggies. Or pasta with grilled veggies or marinara sauce. Pizza with cheese. Snacks ok but no popcorn. Ground chicken or turkey ok. Having nachos tonight. Just no tomato or lettuce. I know it sounds restrictive but not near as bad as FODMAP. And she did say after a few weeks I could start adding in a few of something here and there. Wouldn’t destroy me for days. But please remember, this is working for ME. I don’t want anyone to get messed up because of it. I was desperate and willing to try anything. I also had awful diarrhea initially because I was doing it with the meds. It takes some experimenting. Feel free to send me messages with any questions. Hope it helps anyone!

Hi Sally, I know this is alot to ask, but would you mind sharing with me what you typically eat in a day now on the low fiber. I feel like your story sounds just like mine. The doctor told me to follow a very high fiber diet for my tortuous colon along with magnesium, miralax and motegrity and I still couldn't go to the bathroom. It wasn't until I saw your post that everything clicked. Thank you for sharing, you are helping so many people 🙏