Anyone else have a Redundant / Tortuous Colon?

I’ve had them for nearly 30 years. They thought at the time that years of chronic sinus infections, then three consecutive sinus surgeries, caused the nerves to become “irritated” for lack of a better word and then not know how to turn off. I’ve been everywhere, been on every drug, had every procedure. It’s been a lifelong battle, all while raising two kids and having a demanding career. They thought stress a trigger, so I left my job 11 yes ago. No help. Right now I take Nurtec every other day. I have a number of drugs to use as abortives. Nurtec is best I’ve found for me. It’s an every day struggle along with the gi issues which of course they say is a gut-brain thing because I also have slow-motility. Don’t know if any of this helps. Best advice. Headache specialist. All neurologists are not headache specialists.

I am 70 years old. I've dealt with a tortuous intestine and constipation my entire life. Doctors did not help me. The routines they all suggested did not help me. I am fit and exercise 6 days a week. I'm active and not sedentary. It was another patient on this site that helped me. Of course we should all watch our intake of water and make sure we are drinking enough, getting enough sleep, take good care of ourselves. And I realize that there are more issues that could be going on that do need medical attention. But in my years of living I've found the doctors are quick to order tests and procedures and stick to a protocol. It's all the same. Miralax, included. Which was awful for me but I religiously followed every instruction I was given because I wanted to feel better and become "normal". It was awful living like that. I understand. I am using Prunelax now. It has been wonderful. It has changed my life and the gastro doctor has given me a "go ahead" on the continuous use. It can change the color of your intestine but there is apparently no harm. It's due to the senna. I have taken both mini tabs and the Prunelax Max Strength. I take either 4 mini's or 2 1/2 Max tabs. This works for me. I hope that you find something also. It's sad and frustrating and expensive to deal with the doctors. It IS A BIG DEAL that those of us are living with this uncomfortable agony on a daily basis. We need to treated as individuals and what is best for each person. Just handing me a sheet with my next scheduled appointment, procedure, and directions for taking Miralax or whatever, over and over and over, does NOT work. Our doctors need to branch out and look beyond the "protocol". I wish you all the best. Don't give up hope. And I SO understand what you are going through. I could cry, I understand so well. Best wishes. Jacque

Excellent post, Jacque. I agree 100% . Too many doctors slough this condition off as "no big deal" or "nothing to worry about". If you are very lucky , you will find a doctor that is actually helpful, and takes the time to help you find a solution.......even a partial one. I even had one GI Dr. suggest having my colon removed. Insanity. Everyone is different and what works for one will not work for all, (Miralax does nothing for me) so I keep trying different things in order to live a "normal" life. Right now that consists of Linzess, senna, prune juice, and coconut oil ,VERY early in the morning. Senna and colace at bedtime. Once it starts working, it takes several hours or longer before I can leave the house. Sometimes not until noon. jacque, if you don't mind me asking ...when do you take the prunelax and is that all you are taking ?

Thanks so much @sallyw133 for the migraine information for my aunt. She was told that her's is stress related too. She is retired so there is no job stress. I am going to share your post with her.
I have a :significant tortuous colon" according to the colonoscopy notes. I think that is what is causing my slow-motility. I take a daily Senokot S tablet. I don't know if that's the right thing to do because it's a stimulant, but it seems to be my only hope of going. What is your daily treatment for our slow-motility challenge?
Thanks so much for all your good information! 😊

I’ve been working with a dietician for the past month. Very low fiber diet. No raw fruits and veggies other than my lunch smoothie bc they’re blended. No meat. Do feel better not having All that bulk but have had to add Miralax and mag oxide and still not really going. Think I still need something for motility. Trying not to use Motegrity . Too $$$

No, tortuous colon is extra loops and lengths of colon. Diverticulitis is pockets along the colon that fill with seeds or popcorn kernels and get inflamed. And I saw a small study that showed that TC and diverticulitis rarely occur in the same person, but on this board I have seen several people say they have both.

I take the Prunelax every evening at 7:30pm, or as near that time as possible, and it produces a result the following morning. I also use psyllium powder, mixed in my cereal or oatmeal. (8 mg) daily. I occasionally use Metamucil crackers also, one or two depending on my diet for the day, making sure I drink a full glass of water with it. The psyllium powder makes my oatmeal a slime and I've come to find it repulsive. It inflates the volume of the oatmeal, so I've divided it in half because I just couldn't "stomach" it anymore. On those days, I supplement with the Metamucil cracker, in addition to the oatmeal. It works for me and I don't feel like I'm going to vomit with the slimy oatmeal. I've been doing this for quite a few years. The cereal is much easier and palatable for me but I know some people have difficulty with milk. But as we discussed earlier, everyone is different and we all need to find what works for us as individuals. Medicine practices have changed. And my husband, who is a retired clinical pharmacist, is the first to make that statement. He worked in a hospital for over 30 years. A clinical pharmacist is much different than a retail pharmacist at a drug store. He dealt with life and death situations. He has commented numerous times that the treatment now has turned into a "herd treatment" vs focusing on the individual. So we have to be our own best advocate and not give up! Jacque

@sallyw133
Very interesting! I have been doing the exact opposite. I thought a high fiber diet would be more helpful for slow motility. Thank you for telling me about your low fiber diet and please keep me posted on how things are go and any success you have coming up with a combination of possible solutions. This process is definitely a constant trial and error. It seems that if I find something that works, it soon stops working and I need to try something else. Nothing seems to be "the answer" for long.

Hi @notmoff 😊
Yes, drinking too much water can definitely "wash out" the minerals in your body. I ended up in the hospital for two days as they slowly added saline IV drips. (They have to do it super slowly so your brain doesn't swell.) Most doctors will say 6 to 8 drinks during the day of 8 ounces of water is a good target. You can turn one or two of them into your Miralax drink if you want. You must have added your two 8 ounces of Miralax in addition to your normal drinking and then added a few more drinks of water to wash it down so it ended up being too much? I am on a daily Senokot S. I know it has a stimulant, but without it, I cannot go. Did your gastro doc say it's okay to take Senokot S every day?

Excellent post, Jacque. I agree 100% . Too many doctors slough this condition off as "no big deal" or "nothing to worry about". If you are very lucky , you will find a doctor that is actually helpful, and takes the time to help you find a solution.......even a partial one. I even had one GI Dr. suggest having my colon removed. Insanity. Everyone is different and what works for one will not work for all, (Miralax does nothing for me) so I keep trying different things in order to live a "normal" life. Right now that consists of Linzess, senna, prune juice, and coconut oil ,VERY early in the morning. Senna and colace at bedtime. Once it starts working, it takes several hours or longer before I can leave the house. Sometimes not until noon. jacque, if you don't mind me asking ...when do you take the prunelax and is that all you are taking ?