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L
Hi, this is my first post but I've been referring to this site for years. So thank you everyone for letting me feel normal and helping me in times of medical need!!

I was diagnosed with UC in February 2008 and then in Sept needed emergency surgery. I had an ileostomy until May, when a J Pouch was made and then months later experienced fistulas and am now definitely crohns.

I don't remember how many BMs I had my first year but soon I was lucky if I had two a week. I was diagnosed with pelvic floor dysfunction and went through PT and bio feedback. Now I MAYBE have one a day, again if I'm lucky. My surgeon says it's amazing but it can become uncomfortable and gross, especially with the fistulas.

I have tried miralax, Metamucil and enemas but those only worked the very first time I've tried them. I now take Epsom salt whenever needed, which can be twice a day to get things moving but anyone have any other suggestions?? My next step is a catheter.

I eat a lot of vegetables and fruit, try to take 2 liters of water a day, I stretch. I had a scope done of my pouch a month ago and everything looks good so I don't understand why I don't feel the urgency. Is my pouch stretched out that much?

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Jan DollarJan DollarModerator, RN, retired

Sounds pretty terrible. I suppose you can try Milk of Magnesia (similar to epsom salts, maybe a little gentler). Fruit juices are supposed to stimulate peristalsis too. It would seem that you might have suffered some nerve damage from all those fistulas or even the surgery. That is the only explanation I can think of for not being able to sense a full pouch. Your pouch may well be overstretched, but your doctor should have seen this during the scope. 

 

You are not alone. A few others here have a similar issue as you, with too few stools, rather than are more typical complaint of to frequent BMs.

 

Jan

 

 

Jan Dollar
L Lis5191Member
Thanks Jan! I'm in the hospital now, I haven't been able to go to the bathroom for a week and last time was with two doses of Epsom salt. The Mayo Clinic suggested a catheter but now that I'm in upstate New York I can't find anyone to teach me.

Someone from my surgeons practice brought up putting ink in the pouch to measure the size but like you said, they would've noticed during the scope right?

My stomach gets very distended all over my stomach with a weird canyon and that's when the pain occurs. And feels like the only time I can have a BM but nothing passes.

I keep bringing up nerve damage but they look at me like I have 9 heads. Is there a way to test for this?
L
Jan DollarJan DollarModerator, RN, retired

They can do motility tests that track transit times and showing where hangups are. You may have adhesions that cause obstructions, but you should have a lot of pain with that. They also can do imaging to show structural defects that occur only while emptying, such as twisting or prolapse. This test is called defegram.

 

Hope they get this sorted out soon.

 

Jan

Jan Dollar
M M2SMember

Hi Lis,

I had my takedown surgery Oct 28, 2015, almost 5 weeks ago. I have a similar problem where I have been unable to have a bowel movement on my own since the first week post op. I am currently doing bio feedback. Some days I feel like I see improvement, others I feel the opposite.

Until I figure this out, I'm using a 36fr tube I bought on Amazon that has kept the pain away and me out of the hospital.  See the link below. It certainly isn't the most comfortable of convenient, but it does help. Just make sure you use plenty of lube. Run the idea by your doctor, but they need to help you find a solution. I started with a small catheter that went in easier but would clog with the smallest chunck. This is a little bigger and still has its issues, but it's better than nothing. Give it a shot and let us know how it goes.

http://www.amazon.com/gp/produ...i_detailpage_o00_s00

I cut the length way down.

M

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