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Neurogenic bowel & bladder management questions

Posted by marylin @marylin, Oct 8, 2022

I am struggling to find a bowel management program for my neurogenic bowel. I can go on my own in small amounts but don’t get enough out to prevent excessive stool in my colon. I am on Linzess and MiraLAX. Have tried Motigrity & can’t handle the side effects. Presently having to do daily enemas but they’re not working as well as they used to and I have hemorrhoids. Wondering what has worked for others

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Mentor
John, Volunteer Mentor | @johnbishop | Oct 8, 2022

Hi @marylin, Mayo Clinic has some information on neurogenic bowel management here:

-- Neurogenic bladder and bowel management:
https://www.mayoclinic.org/tests-procedures/neurogenic-bladder-bowel-management/about/pac-20394763
Have your doctors made any suggestions for treatments that might be helpful?

REPLY
1 reply
annewithane | @annewithane | Oct 8, 2022

Hi Marylin, have you tried anal irrigation at home? It is what paraplegic ppl and others with very serious nerve spinal nerve damage have used on them. The kit I bought was made by Coloplast and is designed to empty the descending colon.

I'm sure it would have worked well for me if I did not have a tortuous colon and a big gnarly obstruction at the splenic flexure that allows only liquid poo through it. After decades of so many misdiagnosis of bowel problems, I've only recently learned about the true terrible state if my colon by doing a Bowel Transit Study. Currently awaiting more imaging before having major surgery.
Meantime I'm taking Molaxole, which is the least irritating laxative and most effective laxative I've used to date.
Do check out anal irrigation - it may work well for you. Coloplast are a big company and have very supportive staff.

REPLY
2 replies
marylin | @marylin | Oct 8, 2022
In reply to @johnbishop "Hi @marylin, Mayo Clinic has some information on neurogenic bowel management here: -- Neurogenic bladder and..." + (show)
@johnbishop

Hi @marylin, Mayo Clinic has some information on neurogenic bowel management here:

-- Neurogenic bladder and bowel management:
https://www.mayoclinic.org/tests-procedures/neurogenic-bladder-bowel-management/about/pac-20394763
Have your doctors made any suggestions for treatments that might be helpful?

Jump to this post

Yes I have seen the info from Mayo. As I said meds the doctors prescribe like Motegrity didn’t help consistently and I couldn’t take the side effects. Dr. perspective seems to be whatever works do it. I started doing water enemas at the suggestion of one doctor. But now they do not get much out so I use liquid glycerin or Enemeez But they are a bit harsh especially with my hemorrhoids. Now I’m having problem with possibly the Pudenal nerve.

REPLY
marylin | @marylin | Oct 8, 2022
In reply to @annewithane "Hi Marylin, have you tried anal irrigation at home? It is what paraplegic ppl and others..." + (show)
@annewithane

Hi Marylin, have you tried anal irrigation at home? It is what paraplegic ppl and others with very serious nerve spinal nerve damage have used on them. The kit I bought was made by Coloplast and is designed to empty the descending colon.

I'm sure it would have worked well for me if I did not have a tortuous colon and a big gnarly obstruction at the splenic flexure that allows only liquid poo through it. After decades of so many misdiagnosis of bowel problems, I've only recently learned about the true terrible state if my colon by doing a Bowel Transit Study. Currently awaiting more imaging before having major surgery.
Meantime I'm taking Molaxole, which is the least irritating laxative and most effective laxative I've used to date.
Do check out anal irrigation - it may work well for you. Coloplast are a big company and have very supportive staff.

Jump to this post

Thank you for your input. I have thought about anal irrigation but don’t think it would work presently with my hemorrhoid problem. I have never heard of molaxole. I will ck it out. Praying your surgery goes well & you get long term relief

REPLY
marylin | @marylin | Oct 8, 2022
In reply to @annewithane "Hi Marylin, have you tried anal irrigation at home? It is what paraplegic ppl and others..." + (show)
@annewithane

Hi Marylin, have you tried anal irrigation at home? It is what paraplegic ppl and others with very serious nerve spinal nerve damage have used on them. The kit I bought was made by Coloplast and is designed to empty the descending colon.

I'm sure it would have worked well for me if I did not have a tortuous colon and a big gnarly obstruction at the splenic flexure that allows only liquid poo through it. After decades of so many misdiagnosis of bowel problems, I've only recently learned about the true terrible state if my colon by doing a Bowel Transit Study. Currently awaiting more imaging before having major surgery.
Meantime I'm taking Molaxole, which is the least irritating laxative and most effective laxative I've used to date.
Do check out anal irrigation - it may work well for you. Coloplast are a big company and have very supportive staff.

Jump to this post

I checked out molaxole and it is similar to MiraLAX which I already take. The difference is molaxole Contains electrolytes which is good

REPLY
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