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Anyone else have a Redundant / Tortuous Colon?
Hello. Anyone else out there that has a redundant/ tortured colon? I was diagnosed with this a few years ago. I’m usually ok, but if I get constipated, I get sick for a week or two. Last year my gastroenterologist referred me to a surgeon for urgent surgery to remove some of my colon. The surgeon I ended up seeing (not on the recommended list by my gastro doc due to others not available for a long time) said he believed I could live with the redundant colon if I followed a low FODMAP diet. I tried the diet religiously, scientifically (I’m a scientist), and I found it’s not the food I eat that causes these bouts of constipation. The only item I’ve found that might cause the bouts is coffee every day. An occasional coffee seems fine. What has helped me stay regular in a big way is Benefiber (or any pure wheat dextrose generic) three times per day. Lots of fluid.
My gastro doc was upset with the surgeon and said I’d regret not having the surgery. He fears I will end up in an emergency situation. I have searched the Mayo site and don’t find anything about redundant/ tortured colon. Are any Mayo docs doing research or treat this condition? Anyone else suffer from this too?
Thank you! -Jayne
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Oh I so feel for all of you ! Our 5 year old son has redundet colon too ! And it’s so painful to see him in such pain and sick so often ! Doctors here in Canada refuse to do surgery and take some colon out some colon , has anyone had a surgery like that ? And if so what’s the result ?
At my initial visit, he advised starting it at one three times a day then second day go to two three times a day, Woow, Way too much. Called back. Here the fellow I met with first messed up what I was currently taking. So, now taking 1/2 tab 3 times a day. Also be sure to take on empty stomach. Told me I had to give it two weeks. If no BM after 4-5 days, use Dulcolax. Also use IBGuard every day.
Well, I’ve had mixed results. That alone isn’t enough. When I try to bump up dosage very much, side effects. Night sweats, insomnia, “brain zaps”. I’m ok at a whole one at mid-day, but no more. He says he thinks 3-4 BM’s a week are good. Not for me. If I don’t go most every day, I don’t feel good. But overall, this is the best I’ve felt in ages. I felt terrible on Motegrity, which was my previous dr’s go-to drug. Always nauseous. So I don’t want to give up on it yet. I’ve been adding in a little Miralax. A little mineral oil. Trying to avoid the big Dulcolax purge if possible, which will keep me in the house at least a day. I’ve had a call in to the gi since Monday for advice about adding something with it. Disappointed I still haven’t heard back yet. Thought this one was going to be better with that. Oh, I haven’t really noticed that I pee any more than normal, but I’m nearly 65 so I do pee a lot anyway, so it’s hard to
tell!
Hello,
I am curious about your experience with Bethanichol. My GI Doc recently prescribed it for me to try out and I have the medication, but have been hesitant to try it. This will be the third or fourth "off-label" drug I have tried and the others provided no relief, but I got all the unpleasant side effects. As far as I can tell, this stuff is mainly used in people who have trouble urinating, and I really don't need any help there. (I know, tmi....)
I know that most people respond differently to meds, but if you could tell me how it has helped you and any adverse effects, I would appreciate it.
If you would prefer , you can send me a private message....
thanks
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Hug
1 ReactionSally, it takes so long for me because of my motility issues and whatever else is going on with my system .
I have had soap in the enema in the past. Mineral oil was recommended by my doctor to help the waste move through me.
No idea it would take that long to work. At a recent visit to the ER, the dr told me they sometimes use soapy water enemas and asked if I ever tried that. I find it quite interesting because I have been at this same ER more times than I can count and actually saw her just two nights before, and had never been offered this as an option. Wonder what soap would do as opposed to mineral oil?
Has anyone with severe motility issues had a colectomy? If yes, could you please share your experience? Did it help?
Are your issues worse?
Thank you,
JN
Based on my experiences, I do the enema every other day. I use plain water, 3 cups and mix it with 2 cap fulls of mineral oil.
After it is all delivered in my system I wait 10 minutes and hope that it will work. Sometimes it will take my system 3 or 4 hours to complete the emptying process. I do stretches, yoga and abdominal massages to work to have this bowel movement. It is time consuming and painful around the ascending and descending colon areas. The rectum is also uncooperative. I had to to this per doctor orders because after 6 days of constipation I threw up one morning after a cup of coffee at breakfast, " no room at the inn". All these issues take up a lot of my time. I have discomfort and pain on a regular basis. I also have Common Variable Immunodeficiency, something that also accompanies stomach/intestinal issues.
I swim regularly, walk and work to remain active. I do miss attending certain activities due to all the above issues
Thank you for responding.
I haven't tried Motegrity, $200 better than 600.00, not great though, it is a good idea to ration it.
I am researching gastric pacemaker for motility issues, found it only for gastroparesis.
Had to use enema last night, barely any response, 1st time that happened and it concerns me.
How can I learn if MAYO has tried gastric pacemaker for motility issues?
Thank you
I’m in similar situation and a surgeon is waiting for me to schedule surgery for a Diverticular resection. I am 79 and don’t think I will do it. I use milk of magnesia 2 tablets at least once a week, I walk , water with Apple cider vinegar every day, swim, take papaya enzyme after a meal, eat prunes and juice, resort to one envelope of Pico Prep which is a prep for a colonoscopy when I feel the need. I have had flare ups for 10+ years. Its do all of the above or unpredictable surgery. I pray a lot. Best wishes, stay in touch.🥰
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1 ReactionI just asked about using enemas as opposed to a laxative to help get things moving. Thought maybe it wouldn’t be quite so disruptive to my whole day. Without asking TMI, could you tell me what you bought, just plain water, etc? It does sound unpleasant to be honest, but at this point in the game, whatever!