Anyone else have a Redundant / Tortuous Colon?

Hi Kanaaz, I'm new to this website and would like to introduce myself to everyone. Thought replying to you, the moderator, would be the best way. I was just told I have a redundant/fixed colon. Didn't surprise me much as I've suffered with IBS-C, dairy and gluten allergies all of my life. I've been through so many doctors and so many different opinions on what to eat, what not to eat and what drugs or supplements to take that it makes my head spin. This seems like such a great forum to discuss what works for you with others. The one solution I see most often commented on here is to take MiraLax everyday. That alone did not work for me. In combination with 2 stool softners every evening (taking the MiraLax in the am) worked to have a BM, but left me gassy and very bloated. Sadly, not good enough. I am currently working with a Nutritionist who is taking things very slowly, step by step to find a solution other than expensive drugs that cause massive side effects. Anyone out there try Linsess or Amitiza yet? If your thinking about it read the reviews!!! Stopped me dead in my tracks! I've been told this is my only solution short of surgery ever since they put this on the market. I refused to believe that. I'm tired of having to be home because my gut is so bad. I'm either bloated and can't wear my pants or I'm in pain and can't enjoy going out to dinner.
Currently, I'm trying keeping a food and liquid intake diary. Trying to increase liquid intake to at least 60 oz. a day. Helps to keep track. I've been told the Fodmap diet would not work for me. I'm currently trying low fiber because fiber makes me bloat. But here is the biggest experiment. 2 Stool softeners every night with 1-500mg Magnesium citrate tab. It's only been a week, but it's been a GOOD week! Some bloating, a bit gassy once in awhile but for the most part I can go every day and I'm not talking "nuggets" here!

If anyone out there would like to discuss issues and what's worked for them I'd love to hear it. I've struggled with constipation since I was 13 (that I remember being bad) I'm so tired of not being able to wear my clothes, the "HELP" I need sweat pants days. Of not being able to enjoy "relationship" time with my husband because I have a gut ache and feel "FAT".... I weigh 100lbs. :o(
I can't gain weight because I feel so full (bloated) I can't eat much. Trying to enjoy a vacation and worrying about how will I eat, what reaction will I have. Will I be stuck in a hotel room all bloated and gassy and can't go.

Ok...so I've vented. Anyone else ? Thanks and hope to hear from you all!!! Lets find solutions together!

Greetings Kanaaz-
I was scanning info on the Mayo connect and saw that you had tagged me two yrs ago! I've not been keeping up with this for that long either. So I was diagnosed with TORTUROUS colon in 2016, but didn't start to know I needed to ADDRESS it until like today
In researching..I see that I need to research this more
Any help is welcome!
Darlia

A gastroenterologist recommended long term daily use of Miralax along with psyllium (Metamucil) once a day to manage my IBS-C. I do not think this is uncommon.

Welcome, @tlisaberry. I read either in this discussion or in another discussion that some members are concerned about long term usage of MiraLAX. My understanding is that it is an over-the-counter product that's typically used to treat short-term constipation. Do you use it for short periods of time?

I'm glad you have an appointment coming up soon with a specialist about your fainting bouts and low blood pressure when you have the need/urge to empty your bowels. Do you normally have low blood pressure?

My colon specialist advised me to take 2 caps of MiraLax twice each day. I think my mistake has been to wait until I am constipated to take meds. If you have motility issues, you really need it as a preventative.

You are not alone! I’ve had several terrible bouts of almost fainting while needing/trying to go to the bathroom. When I feel it coming on, I lie down on the bathroom floor and put my legs up on the toilet/wall. This is to raise my blood pressure. If there is time, I will put down a towel, but germs are nothing when you feel like you are going to die. After reading about twisted/obstructed colon, I’ve scheduled an appointment with my specialist. I was diagnosed with redundant/tortuous colon two years ago. The doctor used a pediatric scope and still could not complete the procedure. I’m ready to give up food. I want my life back!

Helli @lesliedenny. Your experience sounds very similar to mine. For months, I have had 5 to 7 times of diarrhea every morning, with bouts of constipation in between. Every 5 or 6 weeks, I would start to blackout, always while on the toilet. Since I live in a seniors' residence, staff always attended once I pressed my neck alert, and an ambulance was called for. The medics always made the decision to take me to E.R. due to my vitals readings. In the last 2 E.R. visits I had both a CT scan with contrast and an MRI, which my new GI showed me images of on my 1st appointment with him. I clearly saw 2 large obstructions in one image and 3 in the other. He advised me to drink 2 litres of water, 1 tsp. Metamucil daily, and Lax-a-Day daily. Also ordered lab work. I followed his advice for 6 weeks and found I began to feel better, less diarrhea, no blackout incidents, etc. I was advised to continue that regime, cutting Metamucil to 1/2 tsp. daily and Lax-a-Day every other day. It's been tricky to manage the ups and downs of the bowel, but an improvement. A second Fecal Protectin test this week showed an Alert Symbol beside the reading of 9.4, indicating inflammation. The GI is scheduled to phone me January 21. He told me earlier that I might need a colonoscopy but that it's risky for me due to my various health issues. I have a history of mouth sores and this past 2 weeks have a painful outbreak of sores. I've read this could be a symptom of Crohns, which the G.I. is investigating me for. Good news is that I've had no more blackouts since starting my GI's regime. I really believe in drinking the 2 litres of water daily. I'm waiting anxiously to hear from my GI on the 21st.

I also had diverticulitis and a perforated colon, and ended up with a poop bag for six months, then had the surgery reversed, removing the remaining sigmoid colon. I’ve had chronic constipation since then, with three partial blockages. The last blockage they did a barium enema which showed a twisted and flipped portion of colon, which the enema actually helped clear. Still constipated, but even 1/2 dose gives me awful diarrhea, I cannot make it to the bathroom in time, even if the bathroom is just a few steps away. I cannot find a happy medium. I want so badly to understand why my body doesn’t work quite right anymore and how to best treat it, but I can’t find any answers. I do know that a nerve was cut during the first surgery that the surgeon at Mayo repaired as best he could. I also know a muscle atrophied (is that the right word?) while it wasn’t being used, and I’m wondering if that is part of the problem?

I use smooth move tea, 5.00 at walmart. Works every time. I use it weekly. Its the only thing that has ever worked. I literally do not go number 2 for probably 10-12 days. Ibs c is no joke, its not fun, it's painful. Try the tea, tastes great. Follow the directions n do it the night before u have a day off.

@nancy2020, passing out and knowing you're about to pass out sounds dreadful. Have the measures you've been taking - high fiber diet, drinking more water and a vegetarian diet - helped?