Anyone else have a Redundant/Tortuous Colon?

Posted by onaquest @onaquest, Nov 7, 2018

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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Profile picture for standinginfaith @standinginfaith

@riley5634 Bless your heart!!! I hear you!! you've been thru the ringer too... and at work.. ..calling an ambulance and passing out.. goodness... I'm so sorry!! And , yes a twist can block ..it's really hard to cope with mentally too.. you just "never know when".. (I did have a couple of polyps..but nothing worth mentioning..I've had 3 colonoscopies by 3 different DRs in past 3).I did have an MRI to check that Vargas nerve..(it was ok.. but my neck is a mess..too many falls.. too many car wrecks..was a sales rep for over 35 years and drove 1000 miles a week years) ..I just can't even imagine what you're going thru... prayers for you dear heart!!

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@standinginfaith
it feels like everyone dealing with this is going through much more than a person should. I feel like the colonoscopy certainly didn't help matters. I feel like I'm still recovering from that. I'm looking at a low-er fodmap diet and smaller portions will hope that this will help matters.
What do you eat?
What do you drink besides water....coffee? tea? alcohol? I normally don't drink alcohol but I'm curious only because it's on the fodmap in moderation. I normally drink some caff coffee and then decaf coffee, water. I guess I'm done with diet soda.
I feel crampy but much better than yesterday when I feinted. UFFDA
-riley

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Profile picture for standinginfaith @standinginfaith

I didn't know this could happen..I'm so glad I read this.. I'm going to gastro next Monday..
I thought it was the Xolair shot ( for allergies that stopped my gut signals..( had one July 23 and then every thing stopped..Three to ER (takes 10 hrs..one of our hospitals closed here.. very rural.. left this one overwhelmed) and then a coloscopy and now having to "clean myself out every week end.. ..
I've been constipated all my life.. 72 now.. and have tried Amtiza, Isbrella and Linzess and finally for 3 years Trulance was working.. and then .. the shot and it all stopped..(I have systemic scleroderma..under control ..) then they tried Motegrity 2 mg and after 5 days I had to stop.. tried 1 mg and had to stop.. gastro was like .."why?",, because I was so sick and starting to have trouble swallowing.. ( allergic.. allergic to lots of meds)..
So now I have a TWENTY minute appt they told me (reprimanded for too many portal questions while dr and nurse were out for a week) and I have to be very ready..
I have a tortuous colon too.. so I'm taking my timer in (to keep myself from chatting) and opening with ..I have not used the bathroom for a week.. and sit there.. no conversations about colonoscopy..I read my own chart.. and they sent a letter.. this is so miserable.. MiraLAX every night and pear juice.. and the those 2 nasty little Biscadyls.. and misery for 2 days.
God help us all!! No one else understands but us..and Jesus!! Lifting us all up in prayer!!

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@standinginfaith
I'm curious why you're taking miralax with pear juice?
I do take miralax daily. I start the day with two pint glasses of water (with thyroid med) I then have a cup of coffee with my miralax.

-riley

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Profile picture for flguy @flguy

Hello. Sorry to hear about your diagnosed condition. Although I have not been diagnosed with your diagnosis I have had constipation problems, even had to go to the Emergency Room recently.
A seemingly simple suggestion is to make sure by way of a daily routine of drinking water so that your minimum is 40-50 ozs.--or more--EVERY day. It is extremely important for Crohn's Disease--which I have had since birth--since water passes through more with such IBDs. I tried other osmotic laxatives at my family doctor's suggestion but find it gives me a very significant rash so I have discontinued any such osmotic products (e.g., MiraLAX). Although water is contained in fruit, soup, coffee, many products, etc., there is nothing as good as straight water even if you want to say "in addition to" the other amounts of water from indirect sources. I recommend using a daily Reminder with an alert system to which you can cumulatively insert the on-going quantity total of water intake as the day progresses. Using time periods, for example, such as 8AM-1PM, 1PM-6PM, & 6PM-11PM where you can see how you are doing throughout the day, otherwise you may wind up drinking a large amount late in the day which is not the most beneficial way as compared to watching it in an on-going manner. The same water bottle or container of which you know the quantity is best rather then making many entries of amounts from various containers. It should be an easy-to-estimate by eye quantity measuring event (just take a guess at the amount) so it is not burdensome and therefore inclined to be resistant to getting it accomplished. Good luck.

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@flguy
how were you diagnosed with crohns? I will look up info on IBS.
I'm curious what you eat daily?
Do you eat smaller meals/snacks?

-riley

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Profile picture for riley5634 @riley5634

@standinginfaith
I'm curious why you're taking miralax with pear juice?
I do take miralax daily. I start the day with two pint glasses of water (with thyroid med) I then have a cup of coffee with my miralax.

-riley

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@riley5634 Oh I don't take it with pear juice..I take it in water..I drink pear juice (acts like prune juice but tastes so much better..lol!!) Sometimes my sugar "drops" and it works for this too (not diabetic but it just does)..today I am cleaning out with 2 Bisacodyl's..and feeling sort of exhausted..I used to take Trulance and it worked fine for me until I got this Xolair shot.. tied Linzess, Amtiza and Isbrella made me sick or didn't work.. very sensitive to meds.. so I'm hoping this Xolair shot will wear odd (it takes months ) and things will get back to normal.. Trulance really worked very well for me.. 3-5 times a day ..no problem.. perfect.. it was Heaven:) You might ask your gastro about it.. and of course hydrate..hydrate hydrate (I'm not so good at that..continued prayers for all of us!! God bless you!!

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Yes I had a virtual 3D CT colonoscopy after the docs couldn’t get through on the colonoscopy. Gotta admit when the colorectal surgeon wanted to try another scope I was nervous! But he did complete it and I was very relieved. I follow a normal diet now, but have to be very careful and limit the portions of all the foods that I’ve had problems with in the past. These include beans, fatty or fried foods, cabbage, broccoli and processed foods. I drink tea most of the time, a rare coffee now and then. I also drink white wine and an occasional very weak cocktail. And at least 9-10 glasses of water every single day. It works for me but everyone is different. Ask your GI for a nutrition referral or even joining the Mayo Clinic nutrition clinic can help. Like I said it’s trial and error. If I’m having some issues I’ll just stick to clear liquids for 2-3 days, advance to soft low fiber foods and slowly go back to my normal diet as long as I’m not getting any symptoms. I wish you all the best!

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Profile picture for riley5634 @riley5634

@queenie52
thank you for the reply.
My previous two colonoscopies required CT scans to check remainder of the colon. Was this anything that was done for you?
What types of food do you eat?
Do you drink coffee or tea?

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@riley5634 I needed a special scan after my colonoscopy was not completed because of a torturous colon. With what they could get to I had two very large polyps that they removed. I’ve never had polyps before and I’ve had several colonoscopies because my dad died of colon cancer at age 53.
The scan had the same prep as a colonoscopy…
It showed that I have a polyp higher up that needs to be removed and a few other medical issues that I now need to deal with.
I had a sigmoidectomy in July removing a foot of my bowel that had smoldering diverticulitis that had never gone away in the two years that I was dealing with diverticulitis in the ER and the hospital. The polyp was too high for the surgeon to remove so I need another colonoscopy soon to remove that.
I’m going to another specialist that I trust more at Boston hospital and will have my colonoscopy with a surgeon to check the surgery and the healing and to take the polyp.

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Profile picture for riley5634 @riley5634

@standinginfaith
it feels like everyone dealing with this is going through much more than a person should. I feel like the colonoscopy certainly didn't help matters. I feel like I'm still recovering from that. I'm looking at a low-er fodmap diet and smaller portions will hope that this will help matters.
What do you eat?
What do you drink besides water....coffee? tea? alcohol? I normally don't drink alcohol but I'm curious only because it's on the fodmap in moderation. I normally drink some caff coffee and then decaf coffee, water. I guess I'm done with diet soda.
I feel crampy but much better than yesterday when I feinted. UFFDA
-riley

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@riley5634 Oh I am so sick from yesterday I can hardly stand it.. long day ..happens every time.. I have systemic scleroderma.. anyway the gastritis from the cleaning out gets so bad.. I never drink alcohol..(stopped that back in 1990) and only drink water.. and pear juice and Gatorade light..or Kinderlite..(nothing with sucralose in it)..and eating is touch and go... it's very depressing..I don't have much life at all.. 72 ..was getting better and then the allergist gave me Xoliar shot.. long story.. but I'm not going thu as much as alot of folks.. breaks my heart reading the stories... Jesus is our healer and I am still standing in faith!! God bless you and help us all!!

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