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Redundant/Tortuous Colon & Severe Constipation

Posted by kjn72 @kjn72, Nov 8, 2022

JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago I had 14" of colon removed and 3 additional surgeries for a rectocele, entrocele and another bowel prolapse. I have been severely constipated before and after surgeries. I have tried evert kind of otc med, laxatives, fibers and many prescribed meds, drink 1/2 gallon of water, swim 4-5 times weekly, do zumba nothing works. I have thrown up after 6 days of not going. I have pains in right upper and left lower abdominal areas. I am enema dependent to empty my bowels, it is a painful process and can last for 3 hours every time I do it. 2 surgeons recommended colectomy, 1 did not. 1 GI recommended surgery, 2 did not. I am a young 72 and want to continue living actively with less difficulty. Anyone have surgery that worked, and what kind to eliminate this problem? I have been told that colectomy can also produce bloating, gas, things I am already dealing with. Thank you for your help
JN

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kjn72 | @kjn72 | Nov 10, 2022

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

REPLY
2 replies
sallyw133 | @sallyw133 | Nov 10, 2022
In reply to @kjn72 "Based on my experiences, I do the enema every other day. I use plain water, 3..." + (show)
@kjn72

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

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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?

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kjn72 | @kjn72 | Nov 10, 2022

Sally, 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.

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Keith Moon | @jcarndt | Nov 11, 2022
In reply to @sallyw133 "I just had a gi recommend same as being “the” answer to my years of pain..." + (show)
@sallyw133

I just had a gi recommend same as being “the” answer to my years of pain and suffering. Said it could give me my life back. I did join a blog but it sounds like I would be just trading one set of problems for another. I did agree to a consultation with a surgeon bc I was feeling esp awful that day. Why not hear what he has to say? Things would have to get pretty bad to get to that point. Newest Gi
Has me trying Bethanichol, an off-brand use to increase motility. Having varying success but I do “feel” better than I have in months. Also, daily IB Guard. And it really is helping. Not perfect, but he and his nurse are working with in hopes of
finding something that does work.

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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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sallyw133 | @sallyw133 | Nov 11, 2022

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!

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3 replies
colt1234 | @colt1234 | Nov 11, 2022

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 ?

REPLY
Keith Moon | @jcarndt | Nov 11, 2022
In reply to @sallyw133 "At my initial visit, he advised starting it at one three times a day then second..." + (show)
@sallyw133

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!

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Thank you for the information, Sally. And good luck to you. Presently I'm taking Prunelax, 2 colace and 400 mg of magnesium at bedtime. I get up early and take prune juice with coconut oil, Linzess and a big cup of coffee. In about an hour, (usually) things start moving. Unfortunately, I'm stuck in the house until at least noon. This is probably overkill, but every time I experiment ( and we're all just a science experiment, aren't we ?) it throws everything off. And like you if I don't go every day, I'm in big trouble.

REPLY
1 reply
sallyw133 | @sallyw133 | Nov 12, 2022
In reply to @jcarndt "Thank you for the information, Sally. And good luck to you. Presently I'm taking Prunelax, 2..." + (show)
@jcarndt

Thank you for the information, Sally. And good luck to you. Presently I'm taking Prunelax, 2 colace and 400 mg of magnesium at bedtime. I get up early and take prune juice with coconut oil, Linzess and a big cup of coffee. In about an hour, (usually) things start moving. Unfortunately, I'm stuck in the house until at least noon. This is probably overkill, but every time I experiment ( and we're all just a science experiment, aren't we ?) it throws everything off. And like you if I don't go every day, I'm in big trouble.

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Yes, every day is an ongoing experiment for me, constantly tweaking up and down, trying to find that perfect combination. And dealing with drs is sooo frustrating. Called mine this week and thought his nurse understood my questions and what I was experiencing. Boy was I wrong! Somehow she took what happened after I took two Dulcolax after 6 days of no BM’s and conveyed it to the dr as watery diarrhea. He in turn said it was probably overflow. Seriously! I was in the BR for 8 hrs! I wish you could message them directly because now his advice is not accurate. So frustrating!
So I’m back to trying to figure this thing out on my own once again.

REPLY
1 reply
clkurth | @clkurth | Nov 12, 2022

I am 64, diagnosed with redundant colon and acute diverticulitis. Spent 5 days in hospital and 2 ER visits over Halloween. The antibiotics are too harsh for my joints. I’m currently trying turmeric, diverticulitis tea, slippery elm and a few other natural approaches. Seeing my gastro this next week. Hoping to avoid a surgery, but if it will help avoid these episodes in the future, I am willing to proceed. This has been horrific!

REPLY
Keith Moon | @jcarndt | Nov 13, 2022
In reply to @sallyw133 "Yes, every day is an ongoing experiment for me, constantly tweaking up and down, trying to..." + (show)
@sallyw133

Yes, every day is an ongoing experiment for me, constantly tweaking up and down, trying to find that perfect combination. And dealing with drs is sooo frustrating. Called mine this week and thought his nurse understood my questions and what I was experiencing. Boy was I wrong! Somehow she took what happened after I took two Dulcolax after 6 days of no BM’s and conveyed it to the dr as watery diarrhea. He in turn said it was probably overflow. Seriously! I was in the BR for 8 hrs! I wish you could message them directly because now his advice is not accurate. So frustrating!
So I’m back to trying to figure this thing out on my own once again.

Jump to this post

I agree totally about the doctors. I have two, one in the city where I live and one at a teaching hospital two hours away. We have video visits every three months. If I have a question for him, I have to go through his "gatekeepers" using the patient portal. THEY decide which messages are important enough to pass along. I often think they don't even take the time to read the entire message, because they only give me half an answer. Or an answer that does not pertain to me at all. Beyond frustrating. Getting them to answer a phone message is rare.
I'm at the point where I'm basically treating myself, except I cannot write a prescription. Our Medical system is beyond broken.

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