Slow transit constipation and surgery

Posted by januaryjane @januaryjane, Aug 22, 2019

Hi, I have slow transit constipation and Ive tried everything with little help. Amitiza, linzess, trulance...diet modification, pelvic floor therapy...etc. It affects the quality of my life every day. It started at 18 and im almost 34. I cannot maintain a job or even finish school. Just saw a new gastro and he wants me to "drag my feet" on surgery. I know it is not to be taken lightly but i want a life, while im rather young. Just really stressed and would like any thoughts or info that would help. Thanks.

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Hi, prior to last June the normal for me was only three. I used to think I ate to much fiber and drank to much water. Fiber kills me now. I just find it so hard to accept that a persons bowels just stop passing stool. I had a colonoscopy, sitz marker study which I failed completely, not passing one marker. Then had MR Defography. That was local in my state of NH. I tried linzess, Motegrity and Trulance then a combo of two. They even tried Metformin a type two diabetes drug for its side effect. Many folks suffer diarrhea from it. Nothing jump started my bowels. At that point I went to a different Gastro doc in Boston. He tested me for SIBO, it was negative. I then had an anal rectal menomatry test, a nuclear medicine test to be sure my stomach emptied correctly then a specific ( can’t remember) barium swallow to see if from esophagus to small bowel was working. I came back with severe motility and some rectal push issues that PT has been helping. I’m the same with laxatives. Miralax has PEG in it which causes me severe Gastro issues and all the others make me sick as well . The surgeon says I can stay this way if I choose hoping laxatives never stop working, maybe my bowels will start on their own or get the surgery. I’m so tired of having no life. Retirement was to be traveling, spending more time with family and friends but my life has been here at home. Covid doesn’t help but I still would have ventured outside. I’m sure I’ll will have the surgery scheduled September 29th. I will pray this will change my life. I don’t recovery fast from surgery. Anesthesia really wipes me out for days. I have trouble with eating and allergies to so many drugs. I’m a challenge for every surgeon from antibiotics to anti nausea meds and pain control. I’m hoping to get involved in a group or someone might come on this site and tell me at least what the first week is like after surgery. It is still a while before it’s here so I eat very little and continuity laxatives. I’d like to gain a few pounds before surgery as I’ve lost a bit. Hope I don’t change my mind. Thank you so much for your thoughts and prayers and sending me some info. It helps more than you know…Joanne

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Has anyone considered vagus nerve irritation or damage? Have you had any issues with your cervical spine? Anything in particular happen in the year leading up to the start of your problem?

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@mothermary1

Hi, prior to last June the normal for me was only three. I used to think I ate to much fiber and drank to much water. Fiber kills me now. I just find it so hard to accept that a persons bowels just stop passing stool. I had a colonoscopy, sitz marker study which I failed completely, not passing one marker. Then had MR Defography. That was local in my state of NH. I tried linzess, Motegrity and Trulance then a combo of two. They even tried Metformin a type two diabetes drug for its side effect. Many folks suffer diarrhea from it. Nothing jump started my bowels. At that point I went to a different Gastro doc in Boston. He tested me for SIBO, it was negative. I then had an anal rectal menomatry test, a nuclear medicine test to be sure my stomach emptied correctly then a specific ( can’t remember) barium swallow to see if from esophagus to small bowel was working. I came back with severe motility and some rectal push issues that PT has been helping. I’m the same with laxatives. Miralax has PEG in it which causes me severe Gastro issues and all the others make me sick as well . The surgeon says I can stay this way if I choose hoping laxatives never stop working, maybe my bowels will start on their own or get the surgery. I’m so tired of having no life. Retirement was to be traveling, spending more time with family and friends but my life has been here at home. Covid doesn’t help but I still would have ventured outside. I’m sure I’ll will have the surgery scheduled September 29th. I will pray this will change my life. I don’t recovery fast from surgery. Anesthesia really wipes me out for days. I have trouble with eating and allergies to so many drugs. I’m a challenge for every surgeon from antibiotics to anti nausea meds and pain control. I’m hoping to get involved in a group or someone might come on this site and tell me at least what the first week is like after surgery. It is still a while before it’s here so I eat very little and continuity laxatives. I’d like to gain a few pounds before surgery as I’ve lost a bit. Hope I don’t change my mind. Thank you so much for your thoughts and prayers and sending me some info. It helps more than you know…Joanne

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Hi, I read all your posts, and do understand your situation, and the pain. I had, have, similar case but not as bad, and have to depend on laxatives' and prune juice, natural, that helps a bit. In my case I know that painkillers are contributing to my constipation (had a surgery 2 months ago). What I noticed is that Hydration is very important, and anytime I drink less water I get constipated next day. And it's very painful ! Did you pay attention to your water intake ?
Also, try avoiding garlic and onions, personal experience, which in my case make it worse. And I loved both of them but now, at 67, have to live without it. I'll follow your case, and really do hope that something will start BM soon !
Take care !........Jerzy

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@jerzy

Hi, I read all your posts, and do understand your situation, and the pain. I had, have, similar case but not as bad, and have to depend on laxatives' and prune juice, natural, that helps a bit. In my case I know that painkillers are contributing to my constipation (had a surgery 2 months ago). What I noticed is that Hydration is very important, and anytime I drink less water I get constipated next day. And it's very painful ! Did you pay attention to your water intake ?
Also, try avoiding garlic and onions, personal experience, which in my case make it worse. And I loved both of them but now, at 67, have to live without it. I'll follow your case, and really do hope that something will start BM soon !
Take care !........Jerzy

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Thanks for your input…I actually was told I was drinking to much and it showed in my lab work. My sodium and chloride levels were low. I typically drink a gallon a day,always have. I cut back some but I agree water intake is needed for more than just our bowels. I don’t eat garlic or onions, just not a fan. I keep a diary to be sure on days I take laxatives I’m hopefully getting rid of most of what I’ve digested. I only pass water so drinking plenty has always been a concern. I’m allergic to all pain med so we easily ruled that out. It simply has no rhyme or reason. I think that is why having this big operation is so scary. I’m going through pre-ops and I have told the surgeon I have set a date the middle of September to decide if I want to do this. I just wish I could understand better and I didn’t just go to one Gastro or just one surgeon. Everyone states the same. You can stay as is or do the surgery and I should have a better life. I’m simply not sure.
Thanks so much,Joanne

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@mothermary1

Hi, I’m new here and see your post is old. I’m having colectomy for severe constipation and motility.I have not passed a stool in 14 months.I only pass water with laxatives which I’ve been on for 14 months.I also go to PT. I’m scheduled end of September for colectomy. I’m terrified but have no life living on laxatives. I have tried it all. I’m 66 and so afraid but my life is terrible like this. I’m also allergic to pain meds so that’s another issue.not sure if you’ll ever read this. I’m new to site looking for any info.
Thanks…Joanne

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@mothermary1 - Welcome to Mayo Clinic Connect! I see that you have connected with members understanding your problem.
I would be anxious too waiting to have a colectomy.
I have chronic constipation and poor motility- I have been unable to completely empty out for colonoscopies more than once, even with a 2 day prep.
I’m now trying out daily Miralax and if that does not work I’ll try Amitiza etc.
I’m personally worried that I will end up with colectomy too. I know that’s a last resort, but at that point I would not hesitate.
I knew an elderly woman= older than my 77 years- who had been misdiagnosed for years locally and nothing worked. She could not eat and became very weak to the point that her kidneys shut down and she died. She had finally gotten a correct diagnosis, but It was too late for her to have a colectomy.
It would be helpful for you to find someone here to talk about recovery after surgery.
Please stay in touch- you are not alone in this!

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Hi and thank you. I recently threw in the towel with miralax. It was daily forever from trying two heeping capfuls to 10 and then to entire bottle in 64 oz of gaderade. It has PEG in in which I endured till after 15 pounds of weight loss and passing very little. At age 66 all I received from miralax was a huge bloated stomach, severe indigestion and gas. PEG causes me severe gastric issues.
I’m sure I will go ahead with the surgery the end of September unless PT and acupuncture changes my bowels. I’m now on Philips milk of mag, started a new regimen days ago. My eating is better but still never going without medication. I’m constantly thinking about how much I’m eating so I know I need to stop and pass something. Then it’s Philips. Living like this is just awful. If I could wrap my head around getting this surgery for severe constipation and a severe motility issue I might feel better. It just seems something should work and yet as I’ve written I’ve tried it all. I do know people who have had part of their colon removed and said it wasn’t easy but best thing they ever did.
I also read on here “don’t do it”. I think we all recover so different. I’m sure it will take 8 weeks to be back on my feet 100%. Ive had so many surgeries and have run into some issues but almost always say I’m far better than before.
I do hope to connect with someone with advice about getting through recovery. I’m waiting and both my pcp and surgeon are reaching out as well. I understand some folks simply prefer not to talk about it. Best of luck to you. I will be on here giving all the advice I can to help someone to get through recovery as to how my first 48 hours went. I wish you well and hopefully a prescription med will help you….Joanne

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Hi, boy do I feel your pain. I post all the time trying to make the decision,get advise and listen to others. In the end we know the decision is ours. I’m terrified. I’m 66 but if I could get this in control I can have a life. Both Gastro doctors prior to sending me to surgeons all said the decision is mine. I don’t have a “disease” or cancer so I’m lucky. If I suffered something else only that diseased portion would be removed but I have terrible motility and even with laxatives pass water only. I have not passed a form stool in 14 months. I’m getting worst than I ever was.
The reason the entire colon needs to be removed is motility. If they left half my constipation typically will remain. Their is the small chance in my case if after 3 months I’m constipated I would need a stoma but my surgeon does not think that will be my case.
All my tests show my stomach, small bowel and rectum working fine.
If you’ve had all the tests and I mean everything and tried all the OTC meds and prescription meds and you can say nothing is working than find an excellent surgeon. I live close to Boston so I feel very lucky. If I didn’t I would travel to a Mayo.
Make a list asking everything. I did. My daughter also came with us. I asked everything. He was great and was kind and took his time. I’ve seen many doctors. This was not and still isn’t a surgery I’m taking lightly. I’m so scared I won’t recover fast because of my age, I’ll have problems and a million other things going through my head.
In the end the choice is live this life as is or go for it and pray it will get me back to life. I have 20 more years to live, god willing and it can’t be stuck in the house, always worrying if it was a laxative night will it kick in while I’m out. Not to mention I’m tired looking pregnant at age 66. I’m just so sick of it. Go to a surgeon after Gastro has run every test. Go to a great medical facility and get a consultation. All the best..Joanne

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@mothermary1

Hi and thank you. I recently threw in the towel with miralax. It was daily forever from trying two heeping capfuls to 10 and then to entire bottle in 64 oz of gaderade. It has PEG in in which I endured till after 15 pounds of weight loss and passing very little. At age 66 all I received from miralax was a huge bloated stomach, severe indigestion and gas. PEG causes me severe gastric issues.
I’m sure I will go ahead with the surgery the end of September unless PT and acupuncture changes my bowels. I’m now on Philips milk of mag, started a new regimen days ago. My eating is better but still never going without medication. I’m constantly thinking about how much I’m eating so I know I need to stop and pass something. Then it’s Philips. Living like this is just awful. If I could wrap my head around getting this surgery for severe constipation and a severe motility issue I might feel better. It just seems something should work and yet as I’ve written I’ve tried it all. I do know people who have had part of their colon removed and said it wasn’t easy but best thing they ever did.
I also read on here “don’t do it”. I think we all recover so different. I’m sure it will take 8 weeks to be back on my feet 100%. Ive had so many surgeries and have run into some issues but almost always say I’m far better than before.
I do hope to connect with someone with advice about getting through recovery. I’m waiting and both my pcp and surgeon are reaching out as well. I understand some folks simply prefer not to talk about it. Best of luck to you. I will be on here giving all the advice I can to help someone to get through recovery as to how my first 48 hours went. I wish you well and hopefully a prescription med will help you….Joanne

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Have consulted with a neurologist?

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@debkl

Have consulted with a neurologist?

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Yes a brain surgeon. I had an mri too

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Did they discuss muscle myopathies or vagus nerve damage?

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