Anyone else have a Redundant / Tortuous Colon?

@sallyw133 I so understand. My husband and I are separated, he got crazy and I had to leave my beloved Florida to move back to hills. So upsetting. Which makes health issues worse.
Anyway, I wish you the best. I am suffering so this morning where I had the endometrial biopsies. It may be November before they get me in to check for cancer! My GP told me to be patient yesterday as I couldn't get in any sooner elsewhere. I am so tired of it all. Feel like my tortuous colon is hurting in response to where they did biopsies???
Very sensitive to procedure due to small fiber neuropathy which affects organs too.
We got to hang on my friend, our health care system is a mess. I am disabled RN and sad at lack of care and nurses leaving.
Hugs... ❤️

I have that, too. I believe it’s called visceral hypersensitivity. I believe all of my issues started with my migraines. Either the pain itself or the numerous medications over the past 30 years. Now it seems like every week it’s another thing I have wrong with me. My poor husband it about ready to lose his mind. Had hopes of doing all this traveling once he retired. We do travel. But to doctors apts! Not quite the same.

My SIBO breath test was negative but the two week treatment with Rifaxin was like a miracle. Best I had felt in 15 years. A course of levoquin after picking up a bug in Egypt 15 years ago made everything worse. Rifaxin effect only lasted 4 months but not as bad as previously. I avoid probiotics. Yogurt sparingly, carrots work the best of any vegetables so I eat them raw. Family members can’t understand. To them it’s just another organ recital.

Yes, I have it. Years ago surgery at 28 for exploratory lap. Had history exposure to chemicals in research lab. Saw this diagnosis on my CT colonography scan in 2017 after my new GI doc couldn’t get a regular or pediatric scope in. I’m in my 70s. I’m careful about food choices as I also have diverticuli. A damaged ileocecal valve from previous colonoscopy also makes things challenging. I would recommend the Monash university app as it is best I’ve found so far. It is often the quantity of certain things eaten. A strict fodmap diet can cause nutrition problems over a long haul. It is not free app, about $8. I’m retired NP and diabetes educator. I’ve seen the wide swings in dietary advice. It can be confusing. Different health care providers don’t always have good background in nutrition. Moderation in all things. Good luck.

Hi I just wanted to let you know that you are not alone. After having C-diff for 5 months before I requested a stool test from my PCP I was rightfully diagnosed with C-diff. My then PCP put me on flagyl for 7 days. It didn't work and I continued with C-diff until I seen a gastroenterologist and he gave me Vancomycin. Low dose for 21 days and finally came back negative. However, I still have boughts of diarrhea, anxiety, intestinal pain and embarrassment to be intimate with my husband do to anal leakage. I recently after waiting months to get a colonoscopy was diagnosed with a redundant and torturous colon. I have had colonoscopys before and never diagnosed with this.
I feel so angry that my PCP of almost 6 years didn't diagnose me or request a stool test before my request. I called left many messages how horrible my diarrhea was and also emailed them through the portal. Many none response to both and or blamed on COVID-19. My mother actually died from C-diff in 2016. Her intestines burst and since she was 81 they said there was nothing they could do. I have been so scared this is going to happen to me. My anxiety is through the roof and I have to know where the bathrooms are when I finally leave my house. I have to take Pepto bismuth when I have appointments just to be able to leave my house.
I don't know if this why you have your diagnosis but I believe having the C-diff for 6 months is the current reason for my new diagnosis of redundant and torturous colon.
It's horrible that doctors these days don't know how to treat, or they blame everything on COVID-19. We shouldn't have to live in fear of recurring illnesses. My gastroenterologist said I should take metamucil every day and high fiber diet to assist with my bowels. I'm so sorry that we have to deal with this. I will pray for you all.

Insurance in the US is also a mess, yes, but I've been blessed to have found a teaching job with totally free insurance which is very rare here. I'm just not sure how much it will cover. But again best wishes with everything and thank you for your message!!! Keep us posted.

That is very interesting because I DO have both diverticuli and redundant tortuous colon. Always had severe constipation and gas as a young child; then dx with ‘spastic colon’ in early 20’s w right sided pain. Since my early 60s I’ve had alternating diarrhea and constipation (and gas) but age 66 added horrible cramping episodes and nausea. May of 2022 at Age 67 hospitalized then dx w tortuous and redundant colon, diverticuli present but real problem was dx as bacterial colitis. IV and po antibiotics supposedly cleared it however this past week I’ve had a terrible flare. Constipated x 2 days, took Colace for 3 days then finally had a BM. However I apparently had not fully emptied, as yesterday I had 6 or 7 small, loosely formed bm’s and nausea so immediately went to the BRAT diet Today I feel terrible and feel like something is vibrating or gurgling in there. Had one small bm this am. Should I have a SIBO test since I did have the reported bacterial colitis?? Should I take probiotics?? Should I take something for motility issues?? I couldn’t believe the amount of stool that has come out the past couple of days, especially yesterday. I’ve read and studied the low FODMAP diet plan but am not sure it’s right for me. Another issue that’s related is I sweat excessively and can easily become dehydrated if I’m not careful. So that sure doesn’t help the old colon. Anybody have suggestions as to what I should do, other than contact my doctor? I have an appt the end of October and doubt I could be seen any earlier. Thought about going to the ER but not sure I need to go to that extreme.

Sorry, I made a mistake, am from old school. Am only struggling with strenuous intestine.

Hi riv2ga, great to see your colonography pic thank you for sharing👍 but I am sorry you've been through so much too😢 I assume you have a stoma now? And the chronic, acute pain goes on?
Sounds like your Dr's/Surgeons cover each others arses too when the occasion arises 😩 In my last email to the Gastro Dr who will be doing my colonoscopy, I told him I require a written & pictorial record of everything he finds as I don't want my kids or Grandkids to have to produce pix of their 'Mothers' x-rays showing my tortuous colon & gnarly obstruction, to Dr's should they ever develop such bowel problems. I'm expecting to leave the clinic with a copy of the procedure on USB stick.
I have had chronic, very sharp pain in my vagina too since the bowel transit study. Being so blocked up must have created a shift in where a lot of the small loops sit in the lowest part of my abdomen - not even 10mls of morphine, and a full syringe of lidocaine applied internally, can ease it.
I know every little movement/bump whilst having the colonoscopy is going to be very, very painful so will ask my local clinic for a script of the strong numbing gel they use for men having a catheter put it.

Have any of you had such pain caused by your tortuous colon, in the vagina?
Again, thanks for sharing your colonography pix, riv💞
I so wish I'd found this website years ago. If anyone has a story of successful surgery could you please share💞

Thanks, kalbin - I'm going to need all the best wishes I can get🥰 We have a public health system funded by our taxes, here in NZ but it's been broken for many years. Many of those that can afford health insurance (very expensive here) consult with specialists in private practices first then get onto the public system and operated on ahead of us lower income ppl.
I'm assuming you live in the US where everyone needs health insurance - finding a good deal must be a nightmare too! Again, thank you for the good wishes💞