2-years post bowel resection

Posted by sderose @sderose, Dec 30, 2021

Had bowel resection in 1/2022. 2 stricture areas removed and appendix and was benign, thankfully. Theory is comes from pelvic area radiation in 1987 for reproductive organ cancer. Also have stage 3 Chronic Kidney Disease which may or may not be an 1987after-effect. After two years I have continued to have diarrhea for past two years. Without Limodal I could not function or work but don't dare go anywhere without a bathroom. Boss is understanding. Had every test imaginable - labs, CT, internal ultrasound, etc. A low fiber diet suggested but despite fairly normal other cholesterol numbers, my tryiglycerides are 600. Taking meds to bring that down. In addition to the diarrhea, I have pain from about my navel to my pelvic area. It wipes out my energy. I tell my drs this but it feels like they never hear nor address that serious issue. I am at about 25.5 BMI (did lose weight), don't exercise (I know bad), and am 65.5 years old. Have an internal med dr and a gastroenterologist. Husband is in palliative care and I am the long distance caregiver for a family member with fairly severe mental health problems that also affect my "gut". Any suggestions welcome. I do plan to try to start walking, then building up to some low weights for building back muscle loss. (Tooks a couple years to diagnose what my problem was - prior to that I had bouts of 3 - 4 day nausea, vomiting, severe gut, pain and then explosive diarrhea every 4 - 8 weeks for 3.5 years.)

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I had radiation for endometrial cancer in 1995 followed by extensive radiation. I had some digestive issues afterward but no big deal until 6 years ago when I had colon cancer. This cancer was a result of the radiation exactly 20 years prior. The surgeon who removed the tumor also removed almost two feet of my small bowel in order to make a safe connection. He said that those two feet were so damaged by radiation that he had to remove them and that they weren't doing me any good anyway. Wrong!! Since then I have had diarrhea abd gas. Like you I always had to have a bathroom near but I had accidents in my own house because the diarrhea came on so fast.

A couple of months ago everything got worse except the diarrhea which was better. What was worse was intense abdominal pain. I saw a Chrohns specialist who told me that everyone needs an intact ileum which is where I am missing so much small bowel. He wasn't really any help except for the explanation.

My regular gastroenterologist performed a colonoscopy and found no cancer but inflammation of the small bowel. He prescribed budesonide, a steroid, which I haven't taken yet because the pain improved after the colonoscopy. He is sure the inflammation is not Chrohns although that's what it would look like. I'm positive it is from the long term effects of the radiation.

I apologize for the long post but I wanted you to know that you are not alone in suffering the after effects of radiation. I'm being treated at the same medical center where I had the radiation. They tell me that they don't do the extensive radiation any more. I'm glad but sorry that they did it to me. I should have had chemo instead.

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I had a small bowel resection 27 yrs ago. It was all removed but 17 inches. It was a miracle I survived and am still going. I found out I had a clotting disease and my small intestine was full of blood clots. I too had the constant diarrhea and I lost 70 lbs over 2 yrs. The drs said being overweight helped me. Over the years my bowels have changed. I have intermittent constipation with diarrhea. I’ve learned which foods trigger me and which foods to avoid all together. Originally I was told I would be on total peritoneal nutrition (TPN) the rest of my life but was only on it for a year. I really feel for people with Short Bowel or anything to do with bowels. Losing my intestine also affected my kidneys. I ended up on dialysis for 5 yrs and then got a kidney transplant. It’s been a lot but I’m very thankful to be alive as I’m sure you all are. I wish you the best on this journey and I hope you will find some solutions to your issues.

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@rits

I had radiation for endometrial cancer in 1995 followed by extensive radiation. I had some digestive issues afterward but no big deal until 6 years ago when I had colon cancer. This cancer was a result of the radiation exactly 20 years prior. The surgeon who removed the tumor also removed almost two feet of my small bowel in order to make a safe connection. He said that those two feet were so damaged by radiation that he had to remove them and that they weren't doing me any good anyway. Wrong!! Since then I have had diarrhea abd gas. Like you I always had to have a bathroom near but I had accidents in my own house because the diarrhea came on so fast.

A couple of months ago everything got worse except the diarrhea which was better. What was worse was intense abdominal pain. I saw a Chrohns specialist who told me that everyone needs an intact ileum which is where I am missing so much small bowel. He wasn't really any help except for the explanation.

My regular gastroenterologist performed a colonoscopy and found no cancer but inflammation of the small bowel. He prescribed budesonide, a steroid, which I haven't taken yet because the pain improved after the colonoscopy. He is sure the inflammation is not Chrohns although that's what it would look like. I'm positive it is from the long term effects of the radiation.

I apologize for the long post but I wanted you to know that you are not alone in suffering the after effects of radiation. I'm being treated at the same medical center where I had the radiation. They tell me that they don't do the extensive radiation any more. I'm glad but sorry that they did it to me. I should have had chemo instead.

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Sorry you are having so much difficulty. “Stone Age” radiation meant “good tissue” was negatively affected. I don’t regret the Tx in 1987 since it saved my life. But the bowel resection after effects 3 years out are getting really old. Have to be careful of kidneys bc of Stage IIIb chronic kidney disease. Tonight I had b. movement that nearly made me pass out from the pain. Exhausted from chasing solutions, daily bouts of diarrhea and pain.

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@sderose

Sorry you are having so much difficulty. “Stone Age” radiation meant “good tissue” was negatively affected. I don’t regret the Tx in 1987 since it saved my life. But the bowel resection after effects 3 years out are getting really old. Have to be careful of kidneys bc of Stage IIIb chronic kidney disease. Tonight I had b. movement that nearly made me pass out from the pain. Exhausted from chasing solutions, daily bouts of diarrhea and pain.

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Thanks for the hugs.

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I had cervical cancer 32yrs ago. Radiation for 6wks & also 2 radium implants. Had total hysterectomy 8wks later. Problem is I have always suffered bowel urgency every 20mins approx since radiation. Was told this is normal. But the last 3 yrs have been hell. My Gastroenterologist has found severe bowel strictures in lower part of bowel in pelvis. No one wants to do surgery as saying it's too risky! Apparently this is caused from the large amounts of radiation I had & can take 20 to 30yrs to appear as strictures. On a basic very strict diet of mainly liquids so only weigh 40kgs. So depressed. Is there anyone been through this or have had advice on next step. No quality of life as I am constantly in the toilet with severe gut spasms or diarrhea. Any advice would be appreciated. I live in Australia.

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So happy to find this support page. Had colon resection surgery 2 months ago. Dr. removed the sigmoid colon and I have been having problems since. Sigmoid area is where the stool is formed like a holding pattern. Now the stool travels directly to the anus area. So annoying, feels like I always need a bowel movement. So constipated and I have tried everything. Has anyone else had this issue and if so does the colon in time start to stimulate and work better. This is driving me crazy. Wish I never had this horrible surgery. If there is anyone out there PLEASE HELP. Thanks so much.

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@faylenepearl

So happy to find this support page. Had colon resection surgery 2 months ago. Dr. removed the sigmoid colon and I have been having problems since. Sigmoid area is where the stool is formed like a holding pattern. Now the stool travels directly to the anus area. So annoying, feels like I always need a bowel movement. So constipated and I have tried everything. Has anyone else had this issue and if so does the colon in time start to stimulate and work better. This is driving me crazy. Wish I never had this horrible surgery. If there is anyone out there PLEASE HELP. Thanks so much.

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Hello, I had 12" of my colon removed. My tumor was just past the scope they use for a sigmoidoscopy. I am 20 years out and 64. I never got to a point where I didn't have trouble with bowel movements. My body just doesn't have much muscle down there anymore. If I don't take a stimulant, I just don't go. Unless I eat a lot of fruit and vegetables, then I get diarrhea and cannot move away from the toilet. I now have a system down that works for me. I take a medication called Linzess each morning. It took a long time to get it synced to my system, I used to have diarrhea for 6 hours every morning. Now I take it first thing, with my pain meds (another long story) and my bowels wake up anywhere between 1/2hr to 2 hours after. I go 2 to 6 times and then I'm good for the day. I feel SOOOO much better getting cleaned out like this and I've learned to adapt my life so I can maintain. No one told me anything and I was very angry. So, I hope this helps some.

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@faylenepearl

So happy to find this support page. Had colon resection surgery 2 months ago. Dr. removed the sigmoid colon and I have been having problems since. Sigmoid area is where the stool is formed like a holding pattern. Now the stool travels directly to the anus area. So annoying, feels like I always need a bowel movement. So constipated and I have tried everything. Has anyone else had this issue and if so does the colon in time start to stimulate and work better. This is driving me crazy. Wish I never had this horrible surgery. If there is anyone out there PLEASE HELP. Thanks so much.

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Post op laparoscopic sigmoid colectomy (July 2022). Recovery from this type of surgery can take time. I agree, initially it does feel like you are running to the bathroom every five minutes for a BM. It does take the colon time to readjust from this type of surgery but believe me over time things will get much better. Don’t lose touch with the fact that the worst is over and you are now in the recovery stage. Reach out and touch base with your colorectal surgeon when issues arise. Have patience and think positive, you’re on way to recovery!

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@speedbird

Post op laparoscopic sigmoid colectomy (July 2022). Recovery from this type of surgery can take time. I agree, initially it does feel like you are running to the bathroom every five minutes for a BM. It does take the colon time to readjust from this type of surgery but believe me over time things will get much better. Don’t lose touch with the fact that the worst is over and you are now in the recovery stage. Reach out and touch base with your colorectal surgeon when issues arise. Have patience and think positive, you’re on way to recovery!

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Soooo nice and helpful to hear some hopeful feedback. Thank you

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@gregv

Hello, I had 12" of my colon removed. My tumor was just past the scope they use for a sigmoidoscopy. I am 20 years out and 64. I never got to a point where I didn't have trouble with bowel movements. My body just doesn't have much muscle down there anymore. If I don't take a stimulant, I just don't go. Unless I eat a lot of fruit and vegetables, then I get diarrhea and cannot move away from the toilet. I now have a system down that works for me. I take a medication called Linzess each morning. It took a long time to get it synced to my system, I used to have diarrhea for 6 hours every morning. Now I take it first thing, with my pain meds (another long story) and my bowels wake up anywhere between 1/2hr to 2 hours after. I go 2 to 6 times and then I'm good for the day. I feel SOOOO much better getting cleaned out like this and I've learned to adapt my life so I can maintain. No one told me anything and I was very angry. So, I hope this helps some.

Jump to this post

Reply to Samson
Thanks so much for the info. I have been in a depression since my surgery 2 months ago. I too need a stimulant or else the stool just sits in the rectum area and does not move. It's a horrible continual feeling. I will ask my dr about the Linzess. Again many thanks, I sure can use the hope right now.

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