Anyone else have a Redundant / Tortuous Colon?

I was also diagnosed with IBS-C but none of the meds worked. I tried Motegrity, linzess, colchicine, relistor, trulance, amitiza and over the counter meds. My barium enema showed I have a tortuous and redundant colon. I also was unable to have a movement after drinking lots of Golytely. It is so scary. Only thing GI can say might help now is surgery.

Have you been tested for Lupus or thyroid disease? Thyroid disease can cause chronic constipation and a whole list of other things. Normal blood tests are not always normal. The levels regular endos say we need are usually not enough. I recommend finding a holistic dr. Not all holistic drs believe the same things so explain before the consultation.

I believe I have heavy metal toxicity. That can cause chronic constipation. Again blood tests are not reliable and holistic drs are the main ones who treat it.

Sorry, didn’t realize your age. It still may be something to at least look into if you are having pain and nothing else is helping. There is a lot of information online about it and I had no idea how the PF muscles played such an important role in everything in that “area”.

Okay thank you so much! I don't have pain during intercourse and have never had intercourse ( I am 20) but I do have internal vaginal pain occasionally and PF dysfunction might be the cause.

I had gone for my annual gyno visit and he noticed my PF muscles were very tight and tender but never said to do anything. I researched it and read that there is a correlation between them and constipation. At my next gi visit I asked him and he said it definitely could have an impact on my constipation and referred me to a PF therapist. Sometimes they do special tests that can measure if you aren’t able to correctly relax and contract the appropriate muscles or push out the stool (not painful but kind of uncomfortable and embarrassing) you can look them up. They aren’t normal gi tests. The PF therapy helps with all that. I’ll admit, it is awkward at first, but it has definitely helped me. Side benefit. Sex has been totally painful for me for years and every dr said it was post-menopausal dryness and gave me creams that never worked. I can now enjoy it pain-free at 64! It just might be work checking into if nothing else is working.

What are the signs that pelvic floor dysfunction is causing constipation? I have had every GI test in the book and tried every constipation med on the market.

I’ve just seen a pelvic floor specialist/colo-rectal surgeon. Definitely have pelvic floor issues which are impacting constipation. They are bringing in a new female gi that specializes in slow transit colon. Both In new Dept only treat women. I am so excited to maybe finally find help. In meantime, Motegrity, Amitiza, Miralax, 8-10 glasses of water and tbsp of mineral oil at bedtime. Maybe look into any of these you haven’t tried. I’m with you. This whole thing sucks. Trying to juggle what to take, not take, too little, too much. I’m at my sons this weekend. Didn’t go this morning so now I’m in a panic. Afraid to take too much last night because going to zoo this morning. Can’t win.

Thank you @amandaburnett for connecting us. @thellman I am in your exact same boat and I don't know personally anyone else who has this issue.

I've had chronic constipation for decades, but 2020 and 2021 have been absolutely stunningly worse than before. In my earlier years it was written off as IBS-C. Then when I had my first (aborted) colonoscopy, the GI told me I had a "very redundant" colon. The next two GIs echoed his sentiments, and now the 4th GI is all jaded and says it's only "moderately" tortuous and that the one little blip on the screen during my anorectal manometry (after which I immediately relaxed my muscles) shows that pelvic dyssynergia is the cause of my constipation. (I view this as medical misogyny. I even paid $1500 for three PT sessions to train my anal sphincter and got an A+ but still I'm 10+ days between BMs, and even then only with stimulant lax, often coupled with a glycerin suppository or enema).

i had a colonoscopy a week and a half ago and drank the entire 4 liters of goLYTEly plus four ducolax with no bowel movements at all until the 11th hour and they almost made me reschedule (and drink two 4-gallon jugs, which I told them I would never in a million years do). This has never happened to me on colon prep. NEVER. And I don't regularly use stimulant lax, so it's not like I'm dependent.

I haven't asked for surgery, but I have asked for better imaging b/c my low back hurts and my particular type of breast cancer (for which I was treated with double mastectomy and never touched the lymph nodes, so no radiation, no chemo) loves to metastasize to the gut, so I'm more of a mind that we MUST find out if there's something binding to the colon. I do take an aromatase inhibitor that lowers my estrogen to zilch, so perhaps my muscles have atrophied.

Additionally, I have a history of pernicious anemia and high parietal cell antibodies indicative of autoimmune gastritis. Because my atrophy healed and my chronic gastritis isn't active anymore, my GI says I don't have "classic" autoimmune gastritis. Because it's a slow chronic process, and I've been treating with weekly B12 injections for 2 years.

That's way more than you wanted to know about me, but tell me more about you. How long has this been going on, and how old are you?

I've taken all the drugs except maybe amitiza. Some worked initially and then stopped. here are some things I've used that did work initially and then stopped:

fructoogliosaccharides (gas inducing but that dies down)
xyloogiosaccharides (same as above)
magnesium (tons of it, which isn't nice to kidneys, so I try not to)
an abundance of prunes and fruit juice
Bellway psyllium fiber with more water than any human cares to drink
Senna herbal tea (which I try not to use b/c it can be habit forming but we get desperate). it colored the insides of my colon (nice).

People in my autoimmune gastritis group swear by betaine Hcl under the reasoning that reduced stomach acid causes them to not digest thoroughly and the betaine Hcl helps with that and results in less constipation. I have yet to be brave enough to take more than the 2 capsules listed on the container, so I don't know if it works for me. Those who use it successfully take 3-4 with each meal.

I feel the same way. I have been in emergency so many times...I have been to a specialist and they dont want to operate unless my colon falls out wich sounds pretty stupid and scary to me. I can't have a bowel movement myself I have to flush myself with a water enema every few days and for the last year and a half my stool has been yellow. So I know there are digestive issues. Iv been in the er many times with severe pain and they say yes you are very constipated. I am just not getting anywhere. I dont know what to do anymore.

I’ve been searching for a diagnosis for almost three years. It seems like drs just go with IBS when nothing else is obvious. I feel right now like I am a yo-yo. Every dr I see tells me something different. Slow transit, tortuous colon, dyssyrgenia. Add fiber. Don’t add fiber. Low FODMAP. No low FODMAP. I’m ready to pull my hair out! And I just feel sicker and sicker.