Bowel strictures

Posted by dor64 @dor64, Aug 10, 2023

Hi all, Wondering if anyone else suffering from bowel strictures has answers for me? Many years ago I had a lot of radiation & also radium implants to treat cervical cancer. Been suffering since but my issue has got worse in the last 4yrs. Apparently the radiation has done damage to bowel. I have severe gut spasms that can last up to an hour. Never had pain like it, Doctors say I have bowel strictures...damage from radiation. My question is , can anyone enlighten me is there help? I live in Australia & although Drs here are great no one wants to touch me as they seem to think it's all too risky. I sleep sitting up in a recliner chair as I'm terrified of another attack as they originally started whilst lying down. Does anyone else have this problem & if so how do we go on!? Soo depressed. Lost weight, currently 41kgs as everything I eat won't pass through strictures!! Help

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I am nauseous for a few weeks after a SBO. My last one was in July and it is very debilitating for a long while. I used to only have streatorrhea. Now I need a stool softener daily to poop. Belly is always sore even clothes hurt. Do any of you have pain that appears to be on the lower rib. The pain makes it difficult to wear a bra. Doctors don’t seem to understand this. I went to two different pain centers. I got steroid injections that didn’t help. The pain clinic also didn’t know what it was. They said it was from the trauma of my appendix rupture and sepsis changing my pain neurons.
I had a colonoscopy a couple of weeks ago. When I system was emptied for the first time I felt no pain. Now I know it is my digestive system and my adhesions. The colonoscopy found that my ascending and descending colon is so ties up that they don’t move. My transverse colon does work. I already knew from a CT scan in May and July that I have a mobile cecum. Sometimes it is up by my left liver lobe. The colonoscopy a couple of weeks ago showed it by my former gallbladder.

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@judithclark

I am nauseous for a few weeks after a SBO. My last one was in July and it is very debilitating for a long while. I used to only have streatorrhea. Now I need a stool softener daily to poop. Belly is always sore even clothes hurt. Do any of you have pain that appears to be on the lower rib. The pain makes it difficult to wear a bra. Doctors don’t seem to understand this. I went to two different pain centers. I got steroid injections that didn’t help. The pain clinic also didn’t know what it was. They said it was from the trauma of my appendix rupture and sepsis changing my pain neurons.
I had a colonoscopy a couple of weeks ago. When I system was emptied for the first time I felt no pain. Now I know it is my digestive system and my adhesions. The colonoscopy found that my ascending and descending colon is so ties up that they don’t move. My transverse colon does work. I already knew from a CT scan in May and July that I have a mobile cecum. Sometimes it is up by my left liver lobe. The colonoscopy a couple of weeks ago showed it by my former gallbladder.

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I also am nauseous but only while I have the blockage. Taking 1 Coloxal tablet daily(stool softner) as it keeps bowel contents moist enough to pass the strictures. Advice from my Gastroenterologist. Before the strictures were diagnosed I had constant pain under my ribs on the right side. It felt like it was catching, but no one has ever given me an answer to this??? It's a very difficult problem to live with & yes it leaves you depressed, but maybe we that suffer really need to focus on our diet more as there is no alternative unfortunately. We are still here on Earth so let's try to enjoy...even though it's hard when unwell. Keep seeing Doctors for peace of mind also.

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@dor64

I also am nauseous but only while I have the blockage. Taking 1 Coloxal tablet daily(stool softner) as it keeps bowel contents moist enough to pass the strictures. Advice from my Gastroenterologist. Before the strictures were diagnosed I had constant pain under my ribs on the right side. It felt like it was catching, but no one has ever given me an answer to this??? It's a very difficult problem to live with & yes it leaves you depressed, but maybe we that suffer really need to focus on our diet more as there is no alternative unfortunately. We are still here on Earth so let's try to enjoy...even though it's hard when unwell. Keep seeing Doctors for peace of mind also.

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Good to know I am not the only one with rib cage issues. This has been going on for years and doctors say they didn’t know and couldn’t fix it. I just eat small meals and mostly liquid diet.
Take care and keep the faith.

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@judithclark

Good to know I am not the only one with rib cage issues. This has been going on for years and doctors say they didn’t know and couldn’t fix it. I just eat small meals and mostly liquid diet.
Take care and keep the faith.

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You unfortunately are not alone. I was told I have a tortuous colon after my colonoscopy with no mention of a bowel narrowing/stricture. I have severe untreated osteoporosis, a 9" height loss from multiple spinal compression fractures, peripheral neuropathy and resulting pain and wobbliness from carrying around a very bloated belly on spindly legs. The lower rib pain in my very bloated belly increases after a meal, reducing my appetite. A dietician suggests a low fodmap diet to decrease the bloat. My gastroenterologist says the answer is daily Motegrity to decrease constipation. that may cause the bloat although I have about 2 bms a day. I think it is amazing I can still walk and function at all.

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I also have a tortuous colon and feel the same. I tried the FOD Map diet and did nothing. This is where I don’t trust the GI doctors. They work with the digestive system not the mechanical system. I have had issues since 2016 and have seen many GI Docs. They all go back to their IBS text books.
Prior to getting my colonoscopy a couple of weeks ago, the GI doc said I couldn’t poop because of past antibiotics etc. After the colonoscopy when he found I had a tortuous colon and most of it not moving due to adhesions he I asked him if antibiotics etc was the reason I couldn’t poop. He said no. It is all mechanical. Surgeons push me back to the GI docs hoping they can do something.

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@dor64

Oh thankyou for sharing. I knew I couldn't be the only one with this condition. I also don't eat any nuts, seeds, vegetable...except potato. I am allowed tomato, cucumber & zucchini, but they have to be skinned & deserved. I find I can do without them as it gets very monotonous. Can't go to a restaurant for dinner with family . I have minced chicken & beef that I mince myself after removing all chicken membranes. I am terrified of eating. My Gastroenterologist says I have PTSD of foods. If only he went through this pain he would understand.I weigh myself every Friday for a diary I keep for my Dietician. They are very concerned about my weight but it's hard to increase. Thankyou again for your comments as I can finally talk to someone as I think my family get frustrated with it all. I am similar to you in regards to hospitalization & to try an avoid it I take stool softener when I start to feel uncomfortable. But doesn't always work & end up at ER with a ng tube. I hope you live the rest of your life pain free & comfortable.

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Thank you so much for sharing. I am 3 weeks out of the hospital. I also feel like I am having g PTSD with food. Having a NG tube placed and having to deal with it for 5 nights and 6 days is unbearable. I am so scared of it happening again.

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@mashburn

Thank you so much for sharing. I am 3 weeks out of the hospital. I also feel like I am having g PTSD with food. Having a NG tube placed and having to deal with it for 5 nights and 6 days is unbearable. I am so scared of it happening again.

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I was recently hospitalized for my first SBO due to adhesions and they couldn't get the NG tube to go, so I finally made them stop. The pain was severe and thankfully it passed and corrected itself. Since then I have had fear of food. I keep a journal of everything I ingest. I have done lots of research and talked to many people about foods to avoid and paying attention to my body so if it starts again I know to stop eating and do a bowel test. The fear and anxiety are real. PTSD from this is real. I strat to panic if I haven't had a bowel movement or if I haven't passed gas. I listen for my stomach to be making noise as good moves through. I have learned to have routine in my eating habits and knowing what works best for me. I use miralax once or twice a week to make sure things keep moving since I am on the low fiber diet, I also drink one to two cups of coffee every morning as that has always helped me. I try to stay calm az they say stress can make it worse haha right.

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I too had a SBO in August ‘24. Had the NG Tube and several CT scans. You are right its very painful and scary and life changing!
I’m interest to know what “bowel test” you do after eating? I try to listen to my stomach noises and eating very small amounts of food.

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@has319

I too had a SBO in August ‘24. Had the NG Tube and several CT scans. You are right its very painful and scary and life changing!
I’m interest to know what “bowel test” you do after eating? I try to listen to my stomach noises and eating very small amounts of food.

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The NG tube is very scary... it didn't work for me so I had to have a SBO operation 3 months ago which was traumatic. I was in the hospital for 2 weeks. I am very careful with food and as long as it is bland I think it should be ok. There is no magic bullet unfortunately, but Miralax does work for bowel maintenance.

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@mashburn

Thank you so much for sharing. I am 3 weeks out of the hospital. I also feel like I am having g PTSD with food. Having a NG tube placed and having to deal with it for 5 nights and 6 days is unbearable. I am so scared of it happening again.

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I was hospitalized for 10 days because of a blocked bowel. I had been complaining for YEARS about pain after eating, but all I got from the doctors was IBS..which is a coverall for they don't know what is causing it. The pain was so severe one night that I went to the ER, where a wonderful, caring surgeon took over the case and discovered I had malrotation of the intestines. Malrotation is a genetic defect, and difficult to detect without surgery. I wound up in the hospital two more times but managed to avoid surgery. Ever since that time, I have been extremely careful with my diet: no forms of meat (except ground) and I chew everything really well. My diet mostly consists of fruit, well-cooked vegetables, yoghurt, cheese, crackers and...cookies. I am terrified of getting anything stuck in my intestines and, like you, have PTSD about that NG tube. It was awful!

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