Anyone else have a Redundant / Tortuous Colon?

Hi, I’m in a bad place right now, I’m on day 12 and no movement. I’ve been this way since June 2020 and yes, I’ve tried everything. I was scheduled twice for the surgery and canceled both. I don’t want to have a terrible life after like I have now.
I have to admit because of seeing it done so often I’m terrified to wake up with tube up my nose into my stomach. They said it goes in while sleeping but I’ve seen it need to be replaced numerous times. This sounds so terrible but if I had cancer I’d do it but I just can’t wrap my head around doing this because my colon won’t work. I also have gastroparesis. Last month I went 8 days in a row, not a lot, but on my own. It had been weeks before that experience. So, it can work. I eat very little, drink tons of water and the list goes on. It simply doesn’t help. Let me know if you did the surgery and your experience. I’m not near Mayo I live outside Boston.
Thanks and all the best..Joanne

What all have you tried? Have you only seen a regular gi or an actual motility specialist?
I’ve been at this full-time now nearly four years and I totally feel your pain and frustration. I have consulted a colorectal surgeon who has agreed to an ileostomy, but honestly just sounds like a whole new group of issues. Still need bathrooms to constantly empty bags, very limited diet, awful gas.
So the motility specialist I’m with now is willing to work a little “outside the box”. I’m on Bethanichol which is normally prescribed for urine retention but can help with gi motility. I take 20 mg three times a day. One hr before breakfast, in afternoon and at bedtime. Had to work up to this. Then, when no help, added in Amitiza. Currently taking 2- 8 mcg a day. Also, worked up to this. If I miss a day with no BM, I take some mineral oil at bedtime. Few days, 1 Senoket. So far, this regimen seems to be working better than anything else I’ve tried. Oh, also, 2 IB Guard everyday. Not sure why, but helps with left sided abdominal pain. I have also just done pelvic floor therapy with biofeedback as the CRS felt that was part of my issue. Totally unpleasant experience. Have you been tested for pelvic floor dysfunction? I have mixed feelings about whole thing.

Hi, I have my fourth GI motility specialist. Now I’m back on amitiza twice daily and erythromycin 3 times a day and trying 60 ml Philips milk of mag every other day but causes vomiting and I can’t sleep. I was to have a total colectomy but at that time my stomach tested fine with nuclear meal and test for small bowel was great. Ten months later I completely failed Smart Pill study where now I have severe gastroparesis and severe delay in small bowel. I’m not getting surgery unless push comes to shove. I think it will bring on an entire new set of problems, possibly worse than now. I’m 68. Until 3 years ago I was very active so much you couldn’t keep me still. Now I’m miserable. One day at a time. I’ve tried linzess and Motegrity and a combination and so many other drugs too.

I’m 65. Smart pill was what finally diagnosed the slow motility of my entire gi tract but colon is the worst, 82 hrs. My previous motility doc was big fan of Motegrity but I felt awful on it. I too was super active until all this hit nearly 4 years ago now I live day to day. Can never travel or make plans. My life controlled by my colon. Had a meltdown in the gi’s office last week. I think he may finally “get it”!

Hi, I’m in a bad place right now, I’m on day 12 and no movement. I’ve been this way since June 2020 and yes, I’ve tried everything. I was scheduled twice for the surgery and canceled both. I don’t want to have a terrible life after like I have now.
I have to admit because of seeing it done so often I’m terrified to wake up with tube up my nose into my stomach. They said it goes in while sleeping but I’ve seen it need to be replaced numerous times. This sounds so terrible but if I had cancer I’d do it but I just can’t wrap my head around doing this because my colon won’t work. I also have gastroparesis. Last month I went 8 days in a row, not a lot, but on my own. It had been weeks before that experience. So, it can work. I eat very little, drink tons of water and the list goes on. It simply doesn’t help. Let me know if you did the surgery and your experience. I’m not near Mayo I live outside Boston.
Thanks and all the best..Joanne

Has anyone with severe motility issues had a colectomy? If yes, could you please share your experience? Did it help?
Are your issues worse?
Thank you,
JN

I feel your pain. I have dealt with constipation by whole life. It was nothing to go a week without having a BM. Growing up I thought that was normal. Six years ago it became a big problem. I was exposed to mold for a prolonged period of time and it really messed me up further. Doctors kept telling me to take Metamucil but that made it worse. I finally found a naturopathic doctor who helped me figure things out. Going totally gluten free helped enormously. Also, cutting out sugar, mainly desserts, sodas or anything high in sugar was also a huge help. Today I have a BM every morning. Even with a redundant colon I am able to evacuate daily. It really helps to have a routine. I drink a warm glass of water first thing before breakfast. I continue to drink water throughout the day. A clean diet- fruits & vegetables, very little alcohol, daily exercise, abdominal massage before getting out of bed. Specific supplements have also helped keep me on track. Vitamin D3/K2, Vitamin C, digestive enzymes, probiotic. It’s a lot and I know every person is different and has their own specific needs, but I just wanted to share in case it was helpful to someone. Even if you test negative to Celiac disease some people are still sensitive to gluten. That was my case. Good luck to everyone on this site.

I am curious, as yy journey somewhat mirrors yours. I started taking ZenWIse several weeks ago and found that to be a game changer. I also take Cholacol occasionally since I do not have a gall bladder. I have always been in excellent health, exercising 16 hours a week, but since I started ZenWise, my energy levels are off the charts. My stomach pain went away, I do eat whatever I want, in moderation and mostly healthy but I have not given up one thing and all the stomach issues went away. The one thing I do differently than you, is I take Miralax every morning and have concluded I will for the rest of my life. 3 years ago I was in the hospital as I had gone 6 weeks with no movement. 2 weeks was the norm for me until I started taking Miralax.

I feel your pain. I have dealt with constipation by whole life. It was nothing to go a week without having a BM. Growing up I thought that was normal. Six years ago it became a big problem. I was exposed to mold for a prolonged period of time and it really messed me up further. Doctors kept telling me to take Metamucil but that made it worse. I finally found a naturopathic doctor who helped me figure things out. Going totally gluten free helped enormously. Also, cutting out sugar, mainly desserts, sodas or anything high in sugar was also a huge help. Today I have a BM every morning. Even with a redundant colon I am able to evacuate daily. It really helps to have a routine. I drink a warm glass of water first thing before breakfast. I continue to drink water throughout the day. A clean diet- fruits & vegetables, very little alcohol, daily exercise, abdominal massage before getting out of bed. Specific supplements have also helped keep me on track. Vitamin D3/K2, Vitamin C, digestive enzymes, probiotic. It’s a lot and I know every person is different and has their own specific needs, but I just wanted to share in case it was helpful to someone. Even if you test negative to Celiac disease some people are still sensitive to gluten. That was my case. Good luck to everyone on this site.

I am curious, as yy journey somewhat mirrors yours. I started taking ZenWIse several weeks ago and found that to be a game changer. I also take Cholacol occasionally since I do not have a gall bladder. I have always been in excellent health, exercising 16 hours a week, but since I started ZenWise, my energy levels are off the charts. My stomach pain went away, I do eat whatever I want, in moderation and mostly healthy but I have not given up one thing and all the stomach issues went away. The one thing I do differently than you, is I take Miralax every morning and have concluded I will for the rest of my life. 3 years ago I was in the hospital as I had gone 6 weeks with no movement. 2 weeks was the norm for me until I started taking Miralax.