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Anyone else have a Redundant / Tortuous Colon?

Digestive Health | Last Active: 7 hours ago | Replies (1117)

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@ashweb901

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.

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Replies to "Thank you @amandaburnett for connecting us. @thellman I am in your exact same boat and I..."

I have chronic constipation and have tried everything. I finally found a syrup called Lactulose that makes me “not chronically constipated”. It’s been a life saver. Your physician has to prescribe it.

Sounds like you are a whole lot worse off than me. I've been dealing with this for four years. Just had another colonoscopy on Monday and had one back in January. I used to be able to go about 8-9 months without constipation aftetwards. In January it lasted 2 weeks. The one on Monday lasted a day. I've tried linzess, amitiza, and trulance, but they stop working after a week. The only thing that works is massive amounts of Miralax. Then I get dehydrated from the water loss and it affects my kidney function. It's a never ending cycle. Looking for a surgeon to cut out the link. I've been to two and they said I wasn't bad enough. Very frustrating.

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.