Anyone else have a Redundant / Tortuous Colon?

OMG! You are experiencing the same as me…I’ve been on Mayo for SOME time. I’ve seen at least 6 different GI’s. After 5? colonoscopies…the 1st one in2010, the only thing they say is “long tortuous colon w/ diverticulosis.
I’m 5’2”, my normal weight is 130 - 135. I weighed 170 when it was at its worst. Luckily, I got in touch with a GI Dr. I’d never seen. He prescribed me “SurePrep”…it’s what they give to clean you out b4 scopes. It worked, sorta, I had 2 blowouts. The pain in my SWOLLEN gut was unbearable. But that was the beginning…I know this may seem off topic, but I had a metal hip for 16 yrs. 1 day I woke up & all I can say is I was “out of it”. My hip hurt, so I laid back down. I didn’t come out of whatever you wanna call it for over a week..(I have no recollection of what happened during that time). I was in bed, I have 2 kids to get up, get fed, & take to school. When I came to, I went straight to orthopedic dr. & he tested for metal ions…of course I had plenty. Had revision, pain subsided & got back to 130 lb. That was in 2020..pain is back, I only eat soft food & all GI’s say same, tortuous colon & diverticulosis…in fact, a month ago I went to a NEW GI, I had previous reports & scopes. He flipped thru them & said “well, it looks like you have done everything there is to do, I can’t help you”. He gave me amitriptyline 10 mg. Sometimes it helps sometimes it doesn’t but I’ve been on a soft diet for 4 years !
I’ve cried myself (in my room, alone) so many times. I wish I could just go hospice. I hope you have better luck than me. ALSO, make sure you don’t go to the colonoscopy places…they’re everywhere, & that is Literally all they do.
Prayers & best wishes

I started the 20 mg of Celexa because that was the only new thing I came away from the new gi with. Took in am because it can cause insomnia and I already have trouble sleeping. Ironically, made me really tired and nauseous. Not few hours of sleep. Next day, diarrhea started so that night cut normal meds in half. Next day, could not leave br for hours. Well, I am no longer constipated! Unfortunately, we are leaving for a 10 drive to the beach in 3 days. This is not a good thing. Plus, I feel awful. So, next day I cut in half. Little better. But now, two days later, I’m in motel, half way to beach, second day, no BM. Couldn’t take much because likely we will be stuck in traffic. I have been looking forward to this vacation with my son and daughter and 5 grandsons for 3 years, and I’m probably going to feel like crap the whole time. I am so sick of this whole thing.

I know just how you feel. I went on a vacation with a friend. We had this planned for a year and I kept thinking I'd get my constipation under control before we left. Wrong. I ended up skipping doses of Miralax and Linzess so I wouldn't be tied down to the bathroom all morning. After a few days it caught up with me and I was miserable for a couple days. Had to work everything around restrooms but my friend was understanding about it and we got through it.
Good luck. Try to have fun and relax.

@sickofbeinsick1 Hi Tina. Know how you feel. Diagnosed with tortuous colon, insufficient pancreas, etc. But the most exasperating thing is the IBS. So everyday is different, never
knowing what the day will bring, constipation, diarrhea, etc. Must wear pads every day just
brings on a whole level of emotional trauma.
I went to a certified nutritionist, and that's the only thing that has helped. I scheduled 6 visits, and I am at my last meeting on line. Her protocol has helped, smoothies, soft foods. When I
deviate from it, its trouble. Went to a friend's house and ate things I should have run from,
sooooooo, looks like I have to be very strict about what I eat and what I don't eat.
Dr's are taught meds, surgery. I highly recommend a good Certified Nutritionist. My primary Dr. actually recommended food allergy testing and the Fod Map diet. I think its all about the food we eat.
Good Luck!

I know just how you feel. I went on a vacation with a friend. We had this planned for a year and I kept thinking I'd get my constipation under control before we left. Wrong. I ended up skipping doses of Miralax and Linzess so I wouldn't be tied down to the bathroom all morning. After a few days it caught up with me and I was miserable for a couple days. Had to work everything around restrooms but my friend was understanding about it and we got through it.
Good luck. Try to have fun and relax.

@sickofbeinsick1 Hi Tina. Know how you feel. Diagnosed with tortuous colon, insufficient pancreas, etc. But the most exasperating thing is the IBS. So everyday is different, never
knowing what the day will bring, constipation, diarrhea, etc. Must wear pads every day just
brings on a whole level of emotional trauma.
I went to a certified nutritionist, and that's the only thing that has helped. I scheduled 6 visits, and I am at my last meeting on line. Her protocol has helped, smoothies, soft foods. When I
deviate from it, its trouble. Went to a friend's house and ate things I should have run from,
sooooooo, looks like I have to be very strict about what I eat and what I don't eat.
Dr's are taught meds, surgery. I highly recommend a good Certified Nutritionist. My primary Dr. actually recommended food allergy testing and the Fod Map diet. I think its all about the food we eat.
Good Luck!

So you mentioned pancreatic insufficiency…
Do you take the prescription enzymes? ie, zenpep or creon?
I was misdiagnosed for 30 years with IBS-D and it was a constant struggle because nothing really helped.
My condition ruled my life 😵‍💫.
Finally the 3rd gastro practice said I had a tortuous colon, diverticulitis, chronic gastritis, hiatal hernia, stomach ulcers, cachexia and IBS-D. ALL caused by exocrine pancreatic insufficiency. I now take Zenpep when I eat and it has truly changed my life for the better. My weight is now a healthy 106, (I’m only 5ft 2inches) and very fit age 67.
The ONLY foods I avoid is sucrose. That requires another prescription enzyme and I prefer to just avoid any added sugars. I consume all the fruit I desire with no issues whatsoever. If I want desserts, I just use Stevia to bake with and have no issues. I hope others that suffer from these digestive intestinal issues get tested for EPI. It’s estimated that there are MANY people misdiagnosed. It’s a genetic condition that was fairly unknown until around the year 2000.
There is HOPE! Never ever give up advocating for yourself.

I too received a recent diagnosis of EPI. Prescribed Creon. The side effects were intolerable. Terrible nightmares and excruciating back pain. Does the Zenpep cause side effects for you? I am glad you have a happy ending! Thank you for posting. I had just got off the phone with the pharmacist to ask about alternatives to Creon.