Anyone else have a Redundant / Tortuous Colon?

Oops! I meant to say "connection", not correction in my last sentence.

In response to hopeful2:

To answer your question about Raynaud's. As a slender woman, now seriously underweight (unknown cause), I experienced Raynaud's in my fingertips when hiking in the cold as a young person. Now in my late 70's, it occurs daily - not necessarily because my hands are cold. Unfortunately it no longer easily responds to my wiggling fingers or aplying heat and rubbing until it relents an hour later. I never correlated it to my redundant colon that I think is mostly inherited and then is exacerbated by strain bms that caused my inguinal hernia.

Sorry if this is tmi. If you find a correction with Raynauds vascular malfunction and tortuous colon, please share.

I've been following this thread about tortuous colon since I was diagnosed after a colonoscopy fall 2021. The symptoms seem to come and go but mostly show up as a combination of constipation/bloating and diarrhea. This is what I believe is happening - I'm rehearsing it here before I run it by my internal medicine doc.

The tight bend in the colon blocks stool from getting through (constipation/bloating) and then when slightly loosened a watery stool gets by (diarrhea). The pain comes when it is mostly blocked. Miralax for the constipation just makes the diarrhea much worse. I am fairly small (110#) and narrow. My hips and hip flexors are tight in spite of 3x weekly yoga and lots of walking. The descending colon is right behind the hip flexor and psoas muscle runs through there somewhere too. A pelvic floor specialist has me doing hip openers to stretch the area and also self-massage of the transverse to descending colon. I've been doing all these things and still have episodes of pain and bloating. A physical therapist I am seeing for structural pelvic imbalance which causes me hip/pelvic and leg pain, tried reflexology (foot massage) on the side of the descending colon and I got some relief which lasted only 1 day. Some of this is bound up with stress and anxiety so I take a hot bath (when I have time) and rest and relax. It seems there is no easy answer but I will check out the diet mentioned. Thanks!

I always look at the radiologists summary at at the end of the report. What the ER or walkin clinics are looking for is a small bowel obstruction sbo because they can be shortly fatal. They are less concerned with patient management of constipation. Log on to your patient portal as soon as you can. But you are right, there can be a lag time between when the radiologist reads it and they post it to your account. I do not know if this is good advice, but because I had just gone through a grueling 10 days of not being able to poop, GI warned me to take a whole bottle of magnesium citrate if I ever get in a similar situation. This would not work on a regular basis because it is too hard on the kidneys. I knew that if it went longer I would likely die. I had never heard of tortuous colon until my diagnosis. I am just 2 days out and trying to figure out what to take. I do not think his advice of 1 capful of miralax per day is going to work. I will let you know what he says in two weeks, after my follow up. I want to take the least harmful laxatives with the least side effects (especially prescription ones). I had to manage my husbands constipation for years because of his spinal injury and his later pain meds use. I am thinking back. I do remember that the miralax 3X per day for him prescribed by the GI caused him to lose weight and, like one of the other posters, I do not need to lose weight. One thing that really helped him was to take a small bottle of saline enema (the brand name escapes me now) and empty it out and put warm water in it. I gave him one every AM when he woke up as he lay on his left side and that really helped get things started. I do not think that he had my condition. I can see if you work or have a active social life that you would want to judge how much laxative to take. I have been reading about the serotonin connection with bowel motility. I am wondering if anyone in the group has tried an antidepressant for their condition that helped and which one. The only class mentioned were tricyclics, which won't work for me since I tried very small dose years ago as a prophylactic for migraines and, though it worked great, it gave me leukopenia, which is low white blood cell count. This is not an unusual side effect of that med. I am sure glad that I found this site, because I do not want to join facebook after the horror stories my friends have told me about fb. I do not know what I will do in the end. I just live from one poop to the next and try endure the pain, which is horrible for me. One thing I have noticed is that if I lie down, the pain diminishes, making me wonder if there is some kind of gravity issue involved. Thank God in Heaven that I have been able to sleep, so there is some relief from pain.
I would be interested in which laxatives you take, if you do not mind. It is so hard to judge if magnesium based, or senna or bisacodyl are best. I will try herbal tea tomorrow, the one with the least amount of black pepper it it. May God have mercy on all of us so that we can have less pain and a long life. Amen

I just went through this this week. My gi is out of state so my local hospital won’t accept orders. I have been backed up for days & had to ask my pcp to order an X-ray. I have explained to the nurse twice that they had to have them specifically look at my colon to see how much stool was in there. I went for the X-ray & told the tech the same thing. That night the nurse calls to tell me there are no gas pockets! Many things wanted to come out of my mouth! So I asked if there was anything about stool? Mind you, I’m in Walmart. Oh, no obstruction! What about large amount in descending colon? Oh it just says something about retained stool. That was as good as I was going to get. My pcp, who I have only had since January, and I constantly battle over this. I tell him I just need a simple X-ray to see how much stool is in my colon so I know how much stuff to take. My gi can’t order. Besides, my gi has basically told me he can’t manage my constipation. I’d have to call him every other day. I have to do this on my own. Yes, if it gets severe, I will go to the ER, but I can’t go there every time I can’t poop! He just can’t seem to get that! Sorry to rant for so long, but honestly. I was totally ready to jump through the phone!

Has anyone also been diagnose with Raynauds late in life? I am trying to determine if this tortuous colon can be initiated by vascular malfunction.

Thank you for your encouragement and suggestions. I have had fibromyalgia for 40 years now, so I am an old war horse. This whole thing puzzles me because I ate only organic food and cooked my own for 35 years. Lots of fresh fruits and vegies, only whole grains and very lean meat. I'll check out the food websites just in case there is something I am doing that is fundamentally wrong. I want to follow your progress, if possible, since we have the same diagnosis timeline.

I can relate to and agree with your comment! After an almost overnight change, I ended up going to the ER and then waited 2 months for an appointment with my gastroenterologist. A colonoscopy a week after that showed Torturous colon. That was a month ago. I also appreciate being able to learn what other people are doing to treat this condition. I’ve also been researching online about diet and other ways to help. I’ve been taking the lowest amount of senna softeners I can to help right now but plan to use diet. I drink more water than I used to.
With your years of caretaking for your veteran husband, I’m sure you’ve seen neglect in care. I know a few veterans who have a lot of frustration over the VA’s level of care, if that’s where he went. If not, as you’ve experienced there are doctors who are proactive and others who are not! I’ve been treated pretty bad by some doctors I’ve seen. When that happens, I move on.
I have fibromyalgia and it’s an illness that is difficult to diagnose and treat. Some doctors still attribute it to mental health. I was lucky early on to find a doctor who's wife had it.
You’re on the right track! This site is helpful, being able to talk to others living with the same conditions. If you do any research online, that can be a helpful way to read about diet and other useful information. Just type ‘diet for tortuous colon’ and stuff will pop up. Some food websites have dietary information also. I’m just starting to learn myself! I’ve learned how valuable being my own advocate is, as you are doing!

This a good site. Grateful that Mayo sponsors it. Diagnosed yesterday after near miss on impaction. Rural ER CT scan said I was fine. Apparently not so after having colonoscopy.
I like the different advice that posters offer. I'm not one to run to ER, having last been there maybe 13 years ago after semi truck injured me. I had no problem with constipation until 4 week ago when this hit me out of the blue. I resent the stigma generated after years of the medical profession labeling patients of all kinds of misunderstood illnesses as hypochondriacs, malingerers and stool gazers. My new answer to cavalier comments is that I am absolutely sure that you could not work at your job if you were in as much pain as I am. After 20 years of me nursing my disabled veteran husband, I am quite aware of how important it is not to become demoralized. How the profession talks to a patient is pivotal as far compliance, knowledge and well being of the patient as the medicine that he or she prescribes. The motto, "First do no harm", applies to the way that the profession addresses their patients as well. Here, here for all of you who persevered and believed in yourself. I just hope that I have the kind of fortitude to try to help myself as you all have done. God Bless.

What is MCT oil? I’ve asked my gi a number of times about diet changes and never get an answer. Maybe my new one will be more receptive. I wish I could get the name of your nutritionist if she does virtual, but not sure how that works disclosing info on here.