Anyone else have a Redundant / Tortuous Colon?

Has anyne had surgery for a tortuous colon? I have been suffering from chronic constipation, gas, bloating, H Pylori, and my general doctor has been monitoring my kidney functions due to the diarhea induced from miralax and drugs that causes dehydraton, which is not good. I have tried Linzess, Amitiza, and Trulance in combination with Miralax. I have have numerous colonoscopies, sitz marker tests and visits to two surgeons who say I am not a candidate for surgery because it is not bad enough. I've had several trips to the ER do to chest pain not knowing if I'm having a heart attack or I'm just backed up. tried all kinds of diets but nothing seems to work and I drink water like a fish! HELP!!!!!!!!!

Hi @thellman and welcome to Mayo Clinic Connect. So glad you found the group. This will allow you to connect with members like @judy75, @ashweb901, @lasirvent, @s35flyer, and @dablues who also have tortuous colon.

"For the select small number of constipated patients who cannot be managed medically, surgical options should be considered." - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780139/

I would suggest getting another opinion about surgery if you have been through everything else without relief. Don't give up on yourself. You know your body better than anyone else.

How long have you been suffering with this?

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.

Hi @thellman and welcome to Mayo Clinic Connect. So glad you found the group. This will allow you to connect with members like @judy75, @ashweb901, @lasirvent, @s35flyer, and @dablues who also have tortuous colon.

"For the select small number of constipated patients who cannot be managed medically, surgical options should be considered." - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780139/

I would suggest getting another opinion about surgery if you have been through everything else without relief. Don't give up on yourself. You know your body better than anyone else.

How long have you been suffering with this?

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 just had my 2nd colonoscopy in a month after a trip to the ER Bc I got extremely sick. Of course the didn’t find anything and blamed it on my meds. But I was the one realized I was constipated for over 2 weeks. Which I have had a problem with for years. But I got an appointment with GI dr. and also was diagnosed with a tortuous colon. Everything I eat goes right through me . I feel like I missing out on so much , Bc i can’t be away from the bathroom. Is there a diet that will help? My dr. Put me on Linzess and miralax.
But this is a nightmare ! Any suggestions . Thanks
Tina

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 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.

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.