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Redundant/Tortuous Colon & Severe Constipation
Digestive Health | Last Active: Jul 8 3:43pm | Replies (82)Comment receiving replies
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
Replies to "Hi, I’m in a bad place right now, I’m on day 12 and no movement. I’ve..."
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.
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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.