Anyone else have a Redundant / Tortuous Colon?

Please know that I do understand. Your story could be mine! I am 72 yrs old and have suffered with the pain you are describing for over 20 years. I've had numerous scans, colonoscopies, ER visits, and hospitalizations and still no answers. Doctors just blame it on being constipated which I do suffer from, but, why am I so constipated when I do everything to avoid that......eating fruits, vegetables, exercise daily, and drink a ton of water, etc. I have also tried acupuncture, hypnosis, and pelvic floor PT. My last appointment with the gastroenterologist resulted in her saying she just doesn't know what to do for me but did suggest that this could be scar tissue around my colon. She said there really isn't a scan that detects that well and I'd need to undergo exploratory surgery to find it. According to the doc, removing the scar tissue and the cutting for the surgery would just cause more scar tissue down the road so it really is a catch 22. I am working hard now on trying to find some answers on my own by trying any suggestions I find on this site and a few other sites. I have experienced several days now free of excruciating pain by taking Atrantil and Triphala daily. I don't know if this will be a long-term solution or not, but, I will take what I can get for now. I want to feel comfortable traveling, plan things with my kids and grandkids, just meeting up with friends without worrying about being in pain and needing to cancel my plans. Feel free to reach out to me if for nothing else than to know you are not alone!

Hi Judy, I too have just recently been diagnosed with Redundant, Fixed, Ridged colon. I requested a consult with a nutritionist and that has given me even more questions! I've been searching the web for different solutions to constipation and found a lot of different approaches. I don't have diverticulitis so your probably much different from me. I have horrible constipation and never get "the runs". I recently got a book called "what the heck should I eat" and am reading it now. It's not directly addressing my issues but it is VERY informative. I recommend it. I too had lost a lot of weight, was down to 98 lbs. (5'2") :o( But of course, my gut was bloated and "angry" so I looked about 3 months pregnant. YUK. The bloating, not being able to get rid of gas, and not pooping were driving me crazy. I just want to feel normal. It certainly makes it hard to do anything in a social setting and 'romance' has been out of the question. I'd love my life back! I feel best when I don't eat. You too? Ok, so things I'm doing to try to help myself. First, water. LOTS of water. I fill a jug with the ounces marked on it every morning and that makes it easy to track how much I've had for the day. My goal is 60 oz. (more than 1/2 my weight in oz.) I started a food journal, keeping track of everything I eat and drink. I make side notes if I feel gassy or bloaty after I eat that food. I write if I had a BM that day or not and the consistency. I am trying 2 stool softeners and 1 500mg Magnesium every night and eating a low fiber diet. I need to get back to walking everyday, which I've skipped because I felt so bad. But even if you feel bad the walk makes you feel better. It's winter here and icy and cold! So I just purchased a treadmill. Hoping that makes a difference as well. Don't ever feel like your Dr.'s office is getting tired of you. You are your own advocate! You need to keep asking and get referrals if they can't help. I'm finding that most Dr.'s don't deal with this well. Let me know if you want to chat or have questions. We're all in this together. Hope this was helpful. Sometimes its just nice to know your not alone. :o) Sherrie (Pete is my nick name)

What a great response. I'm going to try all your suggestions!

Thanks for the nifty image of your colon! I have had esophagrams which seem to show a tortuous esophagus. Many in my family as well as myself, have tortuous blood vessels. My femoral arteries, the usual route for cardiac catherization tools to get to the heart, are described as tortuous. Being old at 79, I have more fecal incontinence as well as urinary frequency. Pelvic Floor Therapy with wise counselling by a specialty therapist was very helpful. I now use three Kirkland fiber capsules at night, at least one Medjool date (what a treat) a day, and hope to increase my fresh vegetables and fruits as we welcome Pacific Northwest Springtime garden foods. The National Institutes of Health has a rare condition website with more information about Tortuosity syndromes. Each condition webpage has a reference to an information specialist who can provide more recent information: https://rarediseases.info.nih.gov/diseases/774/arterial-tortuosity-syndrome

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.