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

Interested in more discussions like this? Go to the Digestive Health Support Group.

Usually you cut everything out and reintroduce things a bitcat a time to see if you can identify triggers

REPLY

I had a colonoscopy two weeks ago because of my family history of colon cancer. The GI doctor said everything was fine. OK, so I read her notes from the colonoscopy and she stated that she had a lot of difficulty doing the colonoscopy because I had a tortuous/redundant colon (never said a word to me!), removed a couple of polyps (again never said a word). I have been experiencing abdominal cramps, nausea., a lot of gas, bloating and either diarrhea or constipation. So I have been trying to find out more about this redundant colon. I am not sure what a low FODMAP diet is. I have found if I eat a metamucial wafer once a day that helps with my bowel movements. The groups sounds like I might find some support and guidance! Thank you!!

REPLY
@kanaazpereira

Hi @onaquest @flguy @carcar,

A redundant colon is an abnormally long colon, especially in the final section (called descending colon). A redundant colon also has additional loops or twists. Other names for a redundant colon include tortuous colon or elongated colon. https://www.healthline.com/health/redundant-colon
I’m tagging @darlia and @rsinger22 who've written about redundant colon, and they may be able to share their experiences.

Jump to this post

Hi Kanaaz, I'm new to this website and would like to introduce myself to everyone. Thought replying to you, the moderator, would be the best way. I was just told I have a redundant/fixed colon. Didn't surprise me much as I've suffered with IBS-C, dairy and gluten allergies all of my life. I've been through so many doctors and so many different opinions on what to eat, what not to eat and what drugs or supplements to take that it makes my head spin. This seems like such a great forum to discuss what works for you with others. The one solution I see most often commented on here is to take MiraLax everyday. That alone did not work for me. In combination with 2 stool softners every evening (taking the MiraLax in the am) worked to have a BM, but left me gassy and very bloated. Sadly, not good enough. I am currently working with a Nutritionist who is taking things very slowly, step by step to find a solution other than expensive drugs that cause massive side effects. Anyone out there try Linsess or Amitiza yet? If your thinking about it read the reviews!!! Stopped me dead in my tracks! I've been told this is my only solution short of surgery ever since they put this on the market. I refused to believe that. I'm tired of having to be home because my gut is so bad. I'm either bloated and can't wear my pants or I'm in pain and can't enjoy going out to dinner.
Currently, I'm trying keeping a food and liquid intake diary. Trying to increase liquid intake to at least 60 oz. a day. Helps to keep track. I've been told the Fodmap diet would not work for me. I'm currently trying low fiber because fiber makes me bloat. But here is the biggest experiment. 2 Stool softeners every night with 1-500mg Magnesium citrate tab. It's only been a week, but it's been a GOOD week! Some bloating, a bit gassy once in awhile but for the most part I can go every day and I'm not talking "nuggets" here!

If anyone out there would like to discuss issues and what's worked for them I'd love to hear it. I've struggled with constipation since I was 13 (that I remember being bad) I'm so tired of not being able to wear my clothes, the "HELP" I need sweat pants days. Of not being able to enjoy "relationship" time with my husband because I have a gut ache and feel "FAT".... I weigh 100lbs. :o(
I can't gain weight because I feel so full (bloated) I can't eat much. Trying to enjoy a vacation and worrying about how will I eat, what reaction will I have. Will I be stuck in a hotel room all bloated and gassy and can't go.

Ok...so I've vented. Anyone else ? Thanks and hope to hear from you all!!! Lets find solutions together!

REPLY
@kanaazpereira

Hi @onaquest @flguy @carcar,

A redundant colon is an abnormally long colon, especially in the final section (called descending colon). A redundant colon also has additional loops or twists. Other names for a redundant colon include tortuous colon or elongated colon. https://www.healthline.com/health/redundant-colon
I’m tagging @darlia and @rsinger22 who've written about redundant colon, and they may be able to share their experiences.

Jump to this post

Greetings Kanaaz-
I was scanning info on the Mayo connect and saw that you had tagged me two yrs ago! I've not been keeping up with this for that long either. So I was diagnosed with TORTUROUS colon in 2016, but didn't start to know I needed to ADDRESS it until like today
In researching..I see that I need to research this more
Any help is welcome!
Darlia

REPLY
@colleenyoung

Welcome, @tlisaberry. I read either in this discussion or in another discussion that some members are concerned about long term usage of MiraLAX. My understanding is that it is an over-the-counter product that's typically used to treat short-term constipation. Do you use it for short periods of time?

I'm glad you have an appointment coming up soon with a specialist about your fainting bouts and low blood pressure when you have the need/urge to empty your bowels. Do you normally have low blood pressure?

Jump to this post

A gastroenterologist recommended long term daily use of Miralax along with psyllium (Metamucil) once a day to manage my IBS-C. I do not think this is uncommon.

REPLY
@tlisaberry

My colon specialist advised me to take 2 caps of MiraLax twice each day. I think my mistake has been to wait until I am constipated to take meds. If you have motility issues, you really need it as a preventative.

Jump to this post

Welcome, @tlisaberry. I read either in this discussion or in another discussion that some members are concerned about long term usage of MiraLAX. My understanding is that it is an over-the-counter product that's typically used to treat short-term constipation. Do you use it for short periods of time?

I'm glad you have an appointment coming up soon with a specialist about your fainting bouts and low blood pressure when you have the need/urge to empty your bowels. Do you normally have low blood pressure?

REPLY
@tracy430

Miralax does not work for me or maybe I'm not patient enough to wait 4 days for it to work. I take Linzess and Milk of Magnesia when that doesn't work as well.

Jump to this post

My colon specialist advised me to take 2 caps of MiraLax twice each day. I think my mistake has been to wait until I am constipated to take meds. If you have motility issues, you really need it as a preventative.

REPLY
@lesliedenny

I was just diagnosed after a painful colonoscopy. Unfortunately, the doctor didn’t stop to talk aboutit so I am doing my own research. For the last several years, since my last coloscopy, I have had episodes where I cannot relieve myself then it feels like I am going to pass out, followed by a drop in blood pressure with cold sweats. These episodes take up to 30 minutes to finish and I have to lie down afterward. I am wondering if they are related. I certainly appreciate everyone’s experience and input.

Jump to this post

You are not alone! I’ve had several terrible bouts of almost fainting while needing/trying to go to the bathroom. When I feel it coming on, I lie down on the bathroom floor and put my legs up on the toilet/wall. This is to raise my blood pressure. If there is time, I will put down a towel, but germs are nothing when you feel like you are going to die. After reading about twisted/obstructed colon, I’ve scheduled an appointment with my specialist. I was diagnosed with redundant/tortuous colon two years ago. The doctor used a pediatric scope and still could not complete the procedure. I’m ready to give up food. I want my life back!

REPLY
@lesliedenny

I was just diagnosed after a painful colonoscopy. Unfortunately, the doctor didn’t stop to talk aboutit so I am doing my own research. For the last several years, since my last coloscopy, I have had episodes where I cannot relieve myself then it feels like I am going to pass out, followed by a drop in blood pressure with cold sweats. These episodes take up to 30 minutes to finish and I have to lie down afterward. I am wondering if they are related. I certainly appreciate everyone’s experience and input.

Jump to this post

Helli @lesliedenny. Your experience sounds very similar to mine. For months, I have had 5 to 7 times of diarrhea every morning, with bouts of constipation in between. Every 5 or 6 weeks, I would start to blackout, always while on the toilet. Since I live in a seniors' residence, staff always attended once I pressed my neck alert, and an ambulance was called for. The medics always made the decision to take me to E.R. due to my vitals readings. In the last 2 E.R. visits I had both a CT scan with contrast and an MRI, which my new GI showed me images of on my 1st appointment with him. I clearly saw 2 large obstructions in one image and 3 in the other. He advised me to drink 2 litres of water, 1 tsp. Metamucil daily, and Lax-a-Day daily. Also ordered lab work. I followed his advice for 6 weeks and found I began to feel better, less diarrhea, no blackout incidents, etc. I was advised to continue that regime, cutting Metamucil to 1/2 tsp. daily and Lax-a-Day every other day. It's been tricky to manage the ups and downs of the bowel, but an improvement. A second Fecal Protectin test this week showed an Alert Symbol beside the reading of 9.4, indicating inflammation. The GI is scheduled to phone me January 21. He told me earlier that I might need a colonoscopy but that it's risky for me due to my various health issues. I have a history of mouth sores and this past 2 weeks have a painful outbreak of sores. I've read this could be a symptom of Crohns, which the G.I. is investigating me for. Good news is that I've had no more blackouts since starting my GI's regime. I really believe in drinking the 2 litres of water daily. I'm waiting anxiously to hear from my GI on the 21st.

REPLY
Please sign in or register to post a reply.