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DiscussionAnyone else have a Redundant / Tortuous Colon?
Digestive Health | Last Active: Nov 5 4:01pm | Replies (1097)Comment receiving replies
Replies to "Hello Jayne, I was diagnosed with a tortuous colon, earlier this year, after many tests (to..."
I know I'm late to the game here, I just found this site. As I'm reading through these posts I'm lying flat on my back in bed, dying, my pain is so horrendous. This is a three-day stint which is not unusual. Sitting is always uncomfortable for me . When I drive my seat is leaned way back. Wearing jeans or, anything around my waist will eventually lead to Pain by the end of the day. Bending over forwards, nope! I am otherwise a healthy, very active , mother of five , ages 40 to 22 years old, grandmother of five! 59 years old and for my whole life of emergency room visits for abdominal pain, I was never diagnosed until last year with a redundant intestine. This, was after I went to the emergency room and was hospitalized immediately. Nothing they gave me for pain helped. They say, narcotics do not e a s e the pain for this condition. Of course, the doctor recommended a colonoscopy but, he said, you just had one last year and it was inconclusive because they said that you were not cleaned out enough. I promised him that I did everything exactly how I was supposed to do on my last colonoscopy. He suggested, that I did two cleanings right in a row! I had to agree with him, I needed to find out what was going on with my stomach! I will say this without sounding disgusting, I could not believe how much waste was in my stomach!! Two nights in a row! Psychologically, if you suffer this pain and discomfort, and bloating, it can wear on you. Really, wear on you. I have found that being grateful for the littlest of things in my life, the beauty of nature, trying to stay in touch with my grandchildren via FaceTime , it's hard to put on a happy face with them when I'm having an episode. Currently, I have no insurance. I live in Florida. The doctor in the hospital recommended I follow up with the doctor who did they colonoscopy so I called the office to set up an appointment, I knew I would be paying cash I figured probably in the hundred dollar area. The woman was very Curt when she let me know that the initial visit fee was $275 no it's ands or buts about it, no payment plan no nothing. So, my life continues with my general practitioner trying to figure things out. My general practitioner, I might add, is a different doctor every time I go there so, there is no relationship building, no ongoing, effective, communication. I have to tell my story over, and over, and over again. One of the doctors who, I happened to see many times, and once after I was hospitalized with a severe attack, said the first colonoscopy was inconclusive. He was thoroughly convinced that my whole problem was constipation nothing more. I stood my ground, I know my body, I told him there is something in there that is not right. Wow, I know I've rambled, nobody understands what I'm going through or the severity of the pain and how it just overwhelms your whole mind and being. This too shall pass. I am, on my good days, a very upbeat, happy, funny, loving human being. I feel very alone in this struggle... I just want this never-ending pain to leave me. Well, if you took the time to read this far, thank you!
I had 4 colon surgeries in 2019 & 2020.(Was supposed to be 2, but they couldn't get the colon to heal back together. )Had 3 different colostomy sites, then an illeostomy. Two weeks ago wound up in the emergency room/hospital with severe abdomnal pain, though i had had a follow up colonoscopy 6 months before and my surgeon said I was healed. Now they say it was tortious--that I have so much scar tissue inside the intestines can get caught on the scar tissue and twist on itself and this will be an ongoing problem. Dr. said not really much that can be done to prevent it but when I asked about diet gave me a FODMAP handout that is not very comprehensive.
I had thyroid disease most of my life so not really familiar with constipation--usually moved my bowels 4-6 times a day all my life. After thyroidectomy I had occasional constipation but fixed with drinking coffee or V8, or eating spaghetti sauce. When they told me I was pre-diabetic I learned to control my blood sugar with diet.
Unfortunately, this FODMAP diet is contrary to sugar controlling diet. I did the "white elimination"--no white bread, potatoes or rice. Lots of high fiber whole grains. Now they want me to stop eating whole grains, nuts and seeds, salads, dried fruits, mushrooms, many vegetables I have eaten regularly. I'm in process of sorting out what I can and can't eat and how to cook. I stopped eating salt 50 years ago--don't use it except occasionally for sore throat gargle. Don't use sugar. Put agave in tea or coffee. Eliminated high fructose corn syrup about 15 years ago. They recommend pureeing most vegies--I LOATHE soft food--like my vegies raw or al dente. Allergic to fish and eggs. I usually only ate twice a day--now it says 6 small meals a day--this is WAY too much time spent thinking about food and my bowels. Looking for others dealing with this and how they do it?
Thank you so much for your post! I have been struggling for three years with gi symptoms of nausea, weight loss, diarrhea, constipation and abdominal pain. Removed my gallbladder. Then a partial small bowel obstruction that thankfully was resolved without a resection. Diagnosed with slow transit digestive system. Before any of this started, a colonoscopy and barium enema showed a redundant colon and no doctors I saw attributed any of my issues to it. I was referred to a gi who specializes in motility issues and he put me on medication and I felt good for a while until last summer when the pain started. He wasn’t too concerned. On my own, I tried the low FODMAP diet but it made things worse because I think I wasn’t eating enough. He told me to stop. Pain got progressively worse with 6 ER visits in 7 months. So in February, he did a colonoscopy. The prep didn’t work completely which was disappointing after all that but he feels my pain is coming from the tortuous colon, which he said “looks like a roller coaster”. So why did no one consider this before? It’s not like I didn’t go to competent doctors. So his treatment plan is to not become constipated. Wow! I could have figured that out without a medical degree! Worse case would be to remove parts of colon. Worst case, remove entire colon. So, I actually got more from your post than from him. Doctors just seem to only want to throw medication at you. I have asked him repeatedly about diet and other methods and get no response. Ironically, after the first of the year, the pain just went away. No idea why. I debated canceling the colonoscopy, but during one of my ER visits, a C/T showed possible IBD. Then, two weeks ago I had my ovaries and tubes. A few days ago, the discomfort in my left side has returned. Not really pain like before but a definite ache. Again, no idea why. Not constipated. No change in diet or meds. So upset. Going on vacation in a week. Afraid the colonoscopy and/or surgery may have stirred things up. I have asked him before about amitriptyline but he won’t prescribe. Wanted me to see someone in pain management. The last thing I want is another doctor. Sorry this is so long.
Thank you for the detailed post. I’m sorry to hear of your struggles. Many are very similar to my own 🙁 After so many years of chronic constipation and severe gas and bloat and making lifestyle changes and begging for diagnostics, I had my first colonoscopy and found out I have a tortuous colon. It feels good to have an answer and I’m hopeful to connect with a specialist who appreciates how bad symptoms can be and wants to support a treatment plan for me. If anyone on here has specialists to recommend, whether they be for GI, dietetics, sleep therapy, pelvic floor therapy, mental health, or any others I’m not thinking of, I’d love to hear your recommendations. I also would love recommendations on resources. Hugs to all 💜
Thank you so much! I was recently diagnosed and was in terrible pain, bloating, the big D, the big C, gas etc. Even passed out twice and busted my head open. I used to take Amitriptyline to sleep so asked my doc to change me back to it and I have had such a lessening of symptoms in just a few days. TMI- but one solid poop instead of 6 or 7 weird ones is like manna from heaven. Again, thank you so much and I've even been sleeping better.