Redundant / Tortuous Colon

Posted by onaquest @onaquest, Nov 7, 2018

Hello. Anyone else out there that has a redundant/ tortured colon? I was diagnosed with this a few years ago. I’m usually ok, but if I get constipated, I get sick for a week or two. Last year my gastroenterologist referred me to a surgeon for urgent surgery to remove some of my colon. The surgeon I ended up seeing (not on the recommended list by my gastro doc due to others not available for a long time) said he believed I could live with the redundant colon if I followed a low FODMAP diet. I tried the diet religiously, scientifically (I’m a scientist), and I found it’s not the food I eat that causes these bouts of constipation. The only item I’ve found that might cause the bouts is coffee every day. An occasional coffee seems fine. What has helped me stay regular in a big way is Benefiber (or any pure wheat dextrose generic) three times per day. Lots of fluid.

My gastro doc was upset with the surgeon and said I’d regret not having the surgery. He fears I will end up in an emergency situation. I have searched the Mayo site and don’t find anything about redundant/ tortured colon. Are any Mayo docs doing research or treat this condition? Anyone else suffer from this too?
Thank you! -Jayne

Liked by gibssy174

@tiss

How long ago was your resection? It can take a long time to heal from this surgery. What part of the bowel was removed and how much? I'm so sorry you are going through this. I had a resection (see my story above) and it took a good 18 months to get some sort of management going on. I've taken magnesium every day 800-1000mg for chronic constipation for 25 years. My constipation is now under control since my surgery 2 1/2 years ago.

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My resection was 11 weeks ago today. I had 7 inches in total of my sigmoid and descending colon removed. I can count on one hand the times I've had to take laxatives in my life. Constipation was only an issue for me in the weeks after my daughter was born and that resolved on its own. I actually was seeing my GI and internists for issues I was having with frequent bowel movements before I had my surgery. Since I had a diverticulitis flare that wasn't resolving with antibiotics, I assumed that the inflammation was causing diarrhea. Now I'm at the opposite end of this with severe constipation. My surgeon and GI are both of the impression that this is not permanent. I have so much discomfort on a daily basis, even 11 weeks feels permanent.

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@tracy430

My resection was 11 weeks ago today. I had 7 inches in total of my sigmoid and descending colon removed. I can count on one hand the times I've had to take laxatives in my life. Constipation was only an issue for me in the weeks after my daughter was born and that resolved on its own. I actually was seeing my GI and internists for issues I was having with frequent bowel movements before I had my surgery. Since I had a diverticulitis flare that wasn't resolving with antibiotics, I assumed that the inflammation was causing diarrhea. Now I'm at the opposite end of this with severe constipation. My surgeon and GI are both of the impression that this is not permanent. I have so much discomfort on a daily basis, even 11 weeks feels permanent.

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@tracy430
You are fresh out of surgery. Please be patient with yourself. I know it's horribly uncomfortable! It can take a full year to recover from a resection. My first 18 months were spent with diarrhea and/or constipation. Took a long time to get a handle on what I could eat, and how to manage the discomfort and flare ups. Your body has been traumatized and it is trying to figure out how to compensate for the loss of the part of your colon, and also the trauma. Remember that your intestines are still very inflamed and not happy. Eat things that are easily digested– very small amounts at a time. Yogurt, scrambled eggs, Ensure– very soft stuff so your intestines don't have to work hard. Low fiber at this point. I also take a probiotic Align every day. I don't know if you are on Facebook but I'm in a wonderful, closed, private group for colectomy patients. I get the best advice from that group that you won't hear from doctors. It's amazing how clueless doctors are about telling us how to help ourselves after this type of surgery. The name of the group is Post colectomy–the roller coaster of debilitating discomfort and pain. Highly recommend. Also, magnesium capsules may help. I take it every single day. I use nature's way magnesium complex. Good luck and please let me know how you are doing. Ask any question at any time. I feel for you! I am 2 1/2 years out from my surgery. Hang in there– it will get better!! ❤️

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@tiss

@tracy430
You are fresh out of surgery. Please be patient with yourself. I know it's horribly uncomfortable! It can take a full year to recover from a resection. My first 18 months were spent with diarrhea and/or constipation. Took a long time to get a handle on what I could eat, and how to manage the discomfort and flare ups. Your body has been traumatized and it is trying to figure out how to compensate for the loss of the part of your colon, and also the trauma. Remember that your intestines are still very inflamed and not happy. Eat things that are easily digested– very small amounts at a time. Yogurt, scrambled eggs, Ensure– very soft stuff so your intestines don't have to work hard. Low fiber at this point. I also take a probiotic Align every day. I don't know if you are on Facebook but I'm in a wonderful, closed, private group for colectomy patients. I get the best advice from that group that you won't hear from doctors. It's amazing how clueless doctors are about telling us how to help ourselves after this type of surgery. The name of the group is Post colectomy–the roller coaster of debilitating discomfort and pain. Highly recommend. Also, magnesium capsules may help. I take it every single day. I use nature's way magnesium complex. Good luck and please let me know how you are doing. Ask any question at any time. I feel for you! I am 2 1/2 years out from my surgery. Hang in there– it will get better!! ❤️

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After my 4th surgery this year, which ended up being a Deloyers Procedure, one of the things the surgeon recommended if I needed it was Senekot. I came out of the hospital with very consistent diarrhea so it was not needed. After about 4 weeks, things started firming up and I was feeling a little bit of discomfort, so I took some and it did help. Not nearly as harsh as a laxitive. I am also doing a yogurt probiotic daily as I am not digesting pills very well. All the potassium pills they gave me in the hospital came out in the toilet completely whole days 3 & 4 post discharge. Freaked me out, but at least I knew small hard things were making it out.
Still being careful, eating easy to digest foods, eggs, pancakes, applesauce, etc and drinking high protein Boost. But if I start feeling like it is getting hard to go I will take the Senekot. I hope you feel better. And I am now 7 weeks post Deloyers procedure.

Liked by tiss

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@thull

After my 4th surgery this year, which ended up being a Deloyers Procedure, one of the things the surgeon recommended if I needed it was Senekot. I came out of the hospital with very consistent diarrhea so it was not needed. After about 4 weeks, things started firming up and I was feeling a little bit of discomfort, so I took some and it did help. Not nearly as harsh as a laxitive. I am also doing a yogurt probiotic daily as I am not digesting pills very well. All the potassium pills they gave me in the hospital came out in the toilet completely whole days 3 & 4 post discharge. Freaked me out, but at least I knew small hard things were making it out.
Still being careful, eating easy to digest foods, eggs, pancakes, applesauce, etc and drinking high protein Boost. But if I start feeling like it is getting hard to go I will take the Senekot. I hope you feel better. And I am now 7 weeks post Deloyers procedure.

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After my surgery, I also had what I believed was magnesium coming out whole. It freaked me out as well. I had diarrhea for the first day and a half after surgery and since then I've been constipated. I haven't tried the Senekot yet.

Liked by thull

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@tiss

@tracy430
You are fresh out of surgery. Please be patient with yourself. I know it's horribly uncomfortable! It can take a full year to recover from a resection. My first 18 months were spent with diarrhea and/or constipation. Took a long time to get a handle on what I could eat, and how to manage the discomfort and flare ups. Your body has been traumatized and it is trying to figure out how to compensate for the loss of the part of your colon, and also the trauma. Remember that your intestines are still very inflamed and not happy. Eat things that are easily digested– very small amounts at a time. Yogurt, scrambled eggs, Ensure– very soft stuff so your intestines don't have to work hard. Low fiber at this point. I also take a probiotic Align every day. I don't know if you are on Facebook but I'm in a wonderful, closed, private group for colectomy patients. I get the best advice from that group that you won't hear from doctors. It's amazing how clueless doctors are about telling us how to help ourselves after this type of surgery. The name of the group is Post colectomy–the roller coaster of debilitating discomfort and pain. Highly recommend. Also, magnesium capsules may help. I take it every single day. I use nature's way magnesium complex. Good luck and please let me know how you are doing. Ask any question at any time. I feel for you! I am 2 1/2 years out from my surgery. Hang in there– it will get better!! ❤️

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Thank you so much. I am on Facebook and I'll definitely join the group.

Liked by tiss

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@tracy430

Thank you so much. I am on Facebook and I'll definitely join the group.

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Great! You can ask these people anything. There's nothing that hasn't been asked before. There are newbies and veterans of this difficult thing.

Liked by tracy430

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Hello Jane yes I do
I knoe your post is a few months ago but hope u receive this
I have had several colonoscopies and tend to easily become constipated … I have had several
Episodes of being constipated with severe cramping to the point I faint several
Times during the episode ..fortunately my husband is an ER trauma physician and since these episodes have only occur at night he is home
I am recovering from last night episode and saw
The Restrictive diet fr fruits
And certain vegetables
I am
With you I don’t think mine is connected to diet
I eat fairly clean /
Green smoothies which usually helps me stay regular … I
Think I get dehydrated and it sets up
Constipation.
The last episode was last year so I don’t faint on a regular basis and before that 6 years ago.
I would not want to have a
Partial colon removed …. I think the surgeon knows best… are u fainting too? The cramping is a ten painful and my BP drops etc I am screaming at times …
What have you done since your post!
Did I get the surgery? Did U try the diet
I just joined this site

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PS someone above posted they take magnesium
I do too Phillips Pills and they do help I also
Ate steak a few nights ago
And Although I
Am
not allergic I tested highly reactive which sets
Up a inflammatory response … last night during my episode I got hives on my hands …. I tend to break out in hives about once a year if Ia
Stressed.
Has anyone had fainting hives etc
Ty
Nellie

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@tracy430

Thank you so much. I am on Facebook and I'll definitely join the group.

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What is on Facebook @quiteachiver76 you mentioned in your message

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@tracy430

My resection was 11 weeks ago today. I had 7 inches in total of my sigmoid and descending colon removed. I can count on one hand the times I've had to take laxatives in my life. Constipation was only an issue for me in the weeks after my daughter was born and that resolved on its own. I actually was seeing my GI and internists for issues I was having with frequent bowel movements before I had my surgery. Since I had a diverticulitis flare that wasn't resolving with antibiotics, I assumed that the inflammation was causing diarrhea. Now I'm at the opposite end of this with severe constipation. My surgeon and GI are both of the impression that this is not permanent. I have so much discomfort on a daily basis, even 11 weeks feels permanent.

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Hi @tracy430,

It sounds like you’ve been through so much! I’m so glad you’ve joined this group, and was wondering if you had an opportunity to view this Mayo Clinic Connect discussion:
– Ostomy: Adapting to life after colostomy, ileostomy or urostomy https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/
It’s an incredibly informative conversation, where fellow members have shared their experiences, insights and tips about life before and after ostomy.

Another Connect discussion that I would really encourage you to read through is, "Three months after colon surgery” https://connect.mayoclinic.org/discussion/three-months-after-colon-surgery/ where you will meet @joyce1 @starrlight @sallyg @nannytart @travelgirl @swatson. I’d also like to bring in @maet @frane1939 @lamerex4 t see if they might be able to share more about colon resection and diverticulitis.

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@quiteachiver75

What is on Facebook @quiteachiver76 you mentioned in your message

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@quiteachiver75
Please look at my post. It gives the name of a group on Facebook for colectomy patients.

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@tracy430

My resection was 11 weeks ago today. I had 7 inches in total of my sigmoid and descending colon removed. I can count on one hand the times I've had to take laxatives in my life. Constipation was only an issue for me in the weeks after my daughter was born and that resolved on its own. I actually was seeing my GI and internists for issues I was having with frequent bowel movements before I had my surgery. Since I had a diverticulitis flare that wasn't resolving with antibiotics, I assumed that the inflammation was causing diarrhea. Now I'm at the opposite end of this with severe constipation. My surgeon and GI are both of the impression that this is not permanent. I have so much discomfort on a daily basis, even 11 weeks feels permanent.

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I have constant constipation. I have found GO EASY tea..or a laxative tea works even better than Miralax

Liked by thull

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@idkaren

I have constant constipation. I have found GO EASY tea..or a laxative tea works even better than Miralax

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Miralax does not work for me or maybe I'm not patient enough to wait 4 days for it to work. I take Linzess and Milk of Magnesia when that doesn't work as well.

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I have had two diverticulitis attacks within one year and after recovery I recently had my 2nd colonoscopy. Both attacks happened while I was constipated. I rarely get constipated except these two times though which is confusing to me. Because of this I am so afraid of constipation. I have been diagnosed with a torturous colon and diverticulosis in all areas of my colon. Up until these attacks I never had a problem with constipation that I can recall. Each night after dinner and a couple of hours before bed I now take a heaping teaspoon Metamucil mixed in at least 8 ounces of water. I do this twice within the 2 hours before retiring for the night usually between 8-10pm. I get up in the morning and drink an 8 ounce glass of water while brewing my first cup of coffee. I usually have 2 cups of coffee in the morning and sometimes(3 times a week) one cup in the early afternoon. I go like clockwork while drinking that first cup of coffee each morning before work. I work a 7:30-4:30 day and also take a gummy fiber before lunch and a gummy fiber after. It has kept me regular for the last 6 months with no days of constipation. I also am trying to drink more water as I am not too often thirsty. When ever dining out I make sure to order a glass of water even if I have another beverage. I have always thought I have eaten a fairly good fiber diet but am trying to amp it up. I do cheat a little here and there with a dessert and a small steak once in a while and red wine in moderation. I have NOT noticed that coffee constipates me but rather helps me stay regular but perhaps it is because I have in the morning after the Metamucil has had a chance to work. I try not to take ibuprofen as it does tend to constipate me as I took it continual for a week when I had broken my wrist a week before my first attack. Are you on alot of other meds? I have heard that many medications do this.

Liked by courtneyt

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@nellie55

PS someone above posted they take magnesium
I do too Phillips Pills and they do help I also
Ate steak a few nights ago
And Although I
Am
not allergic I tested highly reactive which sets
Up a inflammatory response … last night during my episode I got hives on my hands …. I tend to break out in hives about once a year if Ia
Stressed.
Has anyone had fainting hives etc
Ty
Nellie

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I'm sitting at the 4 week after colonoscopy diagnosed with severe tortuous colon and sent home. In constant discomfort but I've got the screaming and fainting pain under control since they did a major clean out when they found stool stuck in the walls of my ascending and in the cecum having to force it out. I got home and was still pooping. I saw the top surgeon in the area and was told there was nothing they can do but remove the colon completely because they can't take out just the twisted almost closed section. I'm down to eating mushed up food as I found solid food is the enemy. But I am miserable. And scared. I am scheduled for rectocele surgery April 4.. That was a terrifying moment when I did that, I made the mistake of pushing. I usually can only get any out if i push it out with my thumb but even that wasn't working. I was diagnosed years ago with hemorrhagic gastritis and gastroparesis by colonoscopy after I luckily cleared out my impacted colon. I had drunk too much water n not enough food and was severely deficient of potassium. I was ok for years except for a lot of bouts of symptoms here n there. I'm on lifetime potassium replacement therapy. I found that magnesium was to help better than M. O. M. so I picked up a cheap bottle n had decent results so I searched extensively for the best out there n came across Synergetic Magnesium Complex… Extra strength 500mg. It worked perfect till I did one of the bipolar no no's n stopped taking them without realizing or understanding why. I am back on it and now I'm going quite a bit every day but that leaves me with the feeling of a constant period cramp. I'm so glad I found this group cause the GI only recommended a virtual colonoscopy in 3 years and return to previous diet… That's it! Same with the surgeon, he basically refused to help because I'm still so young… 48… n he'd have to take it all and I'd be on a bag. Nothing else. WHY don't they tell you ANYTHING? SOMETHING? With it being rare and not easy to find info on it, ya'd think they'd recommend something… Even if just referring them to a website that can offer info. Well, thanks for existing, nice to know I'm not alone but sorry you have to have it too. I'll be following along n will comment when I have ANY changes or can offer a suggestion.

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