Pouch rinses, the best my pouch has felt for 19 years

Coloradoguy,

Although you are using the pouch rinses/enemas reactively rather than prophylactically, to address an incomplete evacuation situation in which the Pouch isn't emptying properly or fully, I am wondering if daily Pouch rinses, like daily sinus rinses, might be a helpful thing in terms of flushing out bacteria on a daily basis (meaning for the average person who does not particularly have any emptying issues, but is concerned about SIBO or warding off pouchitis).  I am wondering if anyone has tried using warm water enemas prophylactically on a daily basis on the theory that a Pouch rinse, much like a sinus rinse, helps flush out bacteria and keep the cavity healthy?

A number of members here have used nightly tap water rinses to get complete evacuation. This helped with getting some restorative sleep and also as an adjunct to maintain remission from chronic pouchitis. It does not replace active medical treatment, but can help with functional issues. This is especially true if relapsing outlet strictures are an issue. Some people even installed bidets with an enema feature with happy results! It probably would not help much with SIBO, since that often is well out of reach from a rinse of only a few ounces at a time.

Jan

I agree Barrister.  Where this enema idea started for me was when I flew to Mayo Clinic in Rochester for their 2 week long $7000 non relaxing pelvic floor dysfunction evacuation disorder therapy.  I did get some benefit from relearning how to use involuntary muscles that were forgotten after they built my J pouch, but the rectal rinse is helping just as much.  My doctor there said emptying the pouch better would definitely allow the pouch to heal from "stool stasis", and what could be better than to empty and rinse?

Do you mind sharing about the pelvic floor clinic? I would like to learn about that

kate

Thank you so much for the advice.  It’s worth a try.  I have cuffitis and I am sick of having the urge to push.  So maybe rinsing would help with that.  All I can do is try.   Thanks again.

@coloradoguy posted:

I agree Barrister.  Where this enema idea started for me was when I flew to Mayo Clinic in Rochester for their 2 week long $7000 non relaxing pelvic floor dysfunction evacuation disorder therapy.  I did get some benefit from relearning how to use involuntary muscles that were forgotten after they built my J pouch, but the rectal rinse is helping just as much.  My doctor there said emptying the pouch better would definitely allow the pouch to heal from "stool stasis", and what could be better than to empty and rinse?

I've had the same pelvic floor issue that has forced me to catheterize to empty my pouch - no fun!  I'd be interested in learning more about this therapy from the Mayo Clinic!

2 weeks, 2-3 sessions per day.  it is a biofeedback therapy, with first external and then internal sensors.  I could not tolerate the internal sensor at the time so we did all external.  I probably did not get quite as good of results.  There are muscles up inside where the pouch meets the rectum that need to relax downward.  There is no pushing involved.  The doctor at Mayo determined I was trying to push so hard it was squeezing shut.  They have an electronic sensor test.   

I could not find anyone in the Denver area who could do this kind of therapy.  Every pelvic floor therapist wanted  to give me exercises to strengthen the pelvic muscles because that's what everyone else they treat needs.  J-pouchers are the opposite.

Anything else you'd like to know?

Thank-you for posting this

Yes thank you so much. I think this is more common than we realize and I am glad there are skilled practitioners to help.

I had rectal spasms and had to “learn” with physical therapy how to relax the muscle in a similar way. It’s shocking sometimes how much the pouch affects things

kate

Hi, im so thankful for this post & replies to it. I just wrapped up from 10 days on Cipro. GI doc had me start there for pouchitis but I think it’s cuffitis now based on being off cipro for 2 weeks…  I’m experiencing constant uncomfortable anal spasms & urges for a BM but not much output & often it’s phantom/ nothing. I cannot release gas unless I lay down but I can’t always lay down, trying to live life, work etc im going to give the water flush a try hoping to get some relief & reset this issue. Other than that I might have to get cortfoam. It’s like that tiny little cuff seems to flare, when it’s good it’s good but when it’s spastic, it takes a while to change it so is it a cuff flare or spasms or maybe both @katenet I’m wondering if PT to help control spasms it might be a good idea too, do you notice if you’re overtired or super busy/ on the go or sitting to long triggers these spasms/ flares too? Thanks

The spasms were so severe I was scared. My reaction to them was to squeeze and I had to learn how to relax the muscle. Apparently I was not doing this and with a lot of rectal PT I learned. It’s like the opposite of a kegel exercise.  The dr gave me a tiny bit of Valium as a suppository at first which helped. I wish you peace these can be very scary

They ordered an Anorectal manometry first to see what was happening and that helped guide the treatment.

@katenet thank you so much!

By "spasms" do you mean recurring waves of pain that grow in intensity the longer you delay getting into a bathroom?  For me these happen most often on car rides, but can be other times I cannot get to a bathroom as soon as possible after I feel the urge to "go".  It can get REALLY painful! 

Mine were like rectal seizures

Spasms for me seem to be a constant throbbing in the anal sphincter area, where I evacuate. It throbs and then is spastic and seems to stay spastic and I have a hard time not having the urge to squeeze & stay that way which prob make it even worse.

Nikino - I have the same problem as you.  I don’t have the spasms but I have the urge to push.  It’s called cuffitis.  It’s so painful.  I have tried 3 different suppositories and none seem to really work.  I have a pouchoscopy in 2 weeks from today.  I am hoping to find out again if there is anything else I can do.  I’m so tired of the urge to push.  I have removed almost all sugar from my diet and it hasn’t made much of a difference.  I am at my wits end.   If you find something that works for you please send me a pm or share on here.  I’d truly appreciate it.  Thank you.