New to the forum/Anyone else have a J-pouch?

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Re: New to the forum/Anyone else have a J-pouch?

Postby jr2 » 12 Jul 2013, 11:30

I was kind of thinking the same thing about a small warm water enema, but it would be so much trickier with a J pouch because you've got no colon and who knows how many times a day you'd have to do it to get any kind of substantial relief for the anal area. And then of course your fluid balance and nutrient balance could get messed up because of the lack of a colon. As you mention your diet is probably constantly undergoing tweaking and diet stuff is so individual.
I don't know if you can tolerate soluble fibers or gums, which unlike insoluble fiber like grains and seeds, do help absorb those digestive acids. Pure soluble fiber in the form of an acacia powder maybe? I use acacia powder as I too don't tolerate the cholestyramine well. I'm also wondering about something like slippery elm for you if you haven't ever tried that. Really innocuous and can help soothe digestive tissues from exposure to those acids.
You have been through so much surgically already and must feel so frustrated with all you've been through to be dealing with this now. But like owmybum said above, I also want to welcome you aboard and hope that you feel some relief knowing that we do get it when it comes to what it's like to deal with chronic anal pain.
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Re: New to the forum/Anyone else have a J-pouch?

Postby lefthanded » 12 Jul 2013, 15:26

Thanks for the welcome, the suggestions, and the understanding -- all!
I do small volume "irrigation" using a baby nasal syringe (the little soft-tipped blue ones) and a dilute solution of liquid antacid and warm water.  The antacid cuts the burn and soothes, and the warm water relaxes somewhat.  It also helps flush out any irritating materials I may have ingested, like the occasional fiber-rich goody like -- gasp! -- shredded wheat (my favorite cereal, of course.)  My CRS feels this is probably just fine if I don't over-do it, and I do try to keep it to minimal use.  
I can, however, suggest moistening your wipe/tp with liquid antacid (Mylanta/etc) to wipe when you are burning . . . it is not called antacid for nothing!  It can help you catch your breath when the burn sets in.  
I also buy and use a very pricey cleansing lotion called Balneol  . . . it is soothing and leaves a slight barrier.  Barrier creams just caused me more moisture issues than it was worth, and it doesn't help when the pain and burn are from internal inflammation anyway.  I also use talc (baby powder) to keep the perianal area as dry as possible.  The unfortunate side effect of this is a very dusty bathroom.  Image
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Re: New to the forum/Anyone else have a J-pouch?

Postby Please go-away! » 12 Jul 2013, 17:19

Yes , that's it , take jr2's advice, I couldn't think of the name..yes yes it's slippery elm, Years ago I knew this friend of a friend who used slippery elm (comes in a bark or powder, from a health store)
I just remember he had a j-pouch, he loved this tea, it was such a long time ago, but I do remember that, he did have other health issues. :)  It produces a mucus within the system and coates every inch, very safe and non habit forming.Please do try it
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Re: New to the forum/Anyone else have a J-pouch?

Postby lefthanded » 12 Jul 2013, 19:39

Please go-away! What a pretty kitty. Our gray and white kitty is stoned on a fentanyl patch right now after a couple of tooth extractions. I can't wait for her to be her normal self again!
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Re: New to the forum/Anyone else have a J-pouch?

Postby Guest » 13 Jul 2013, 10:59

lefthanded in a previous post here you expressed...
and on a good day I might go 7-10 times, but "normal" or average days it is more like 12-15 times.

Though it appears you're very well informed and have been "around the block" dealing with your J-pouch, I was wondering do you have problems with "pouchitis"
or no.
I know you have probably searched far and wide but have you ran across this site, as theres one guy on it with a j-p who has reduced his BM to only 5 times a day, and they also discuss pouchitis and burning among other things....@
http://willperone.net/colitis3.php
Also you have got to try the pre-lube the ano with vaseline before bm, I was just doing some research on the added burning with J-pouches and guys are saying it really cuts down on the burning. Heck, with regular Af's this really works! Is this something you've tried already?
HTH GL
P.S. I will continue to help you search for that "magic pill"; someone who has an almost identical situation as yours and found great relief from other "tips and tricks", were bound to find something, right.
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Re: New to the forum/Anyone else have a J-pouch?

Postby lefthanded » 13 Jul 2013, 17:35

Thanks, buttastic! Image 
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Re: New to the forum/Anyone else have a J-pouch?

Postby Sally » 21 Apr 2017, 17:39

Hi guys
I can see all this was posted a few years ago but was googling for help and this came up. I am led in hospital right now after examination under general anisetic earlier and have been told I have a fissure. I have a j pouch following ulcerative colitis in 2001. I have had several problems with pouchitus, a perineal abscess that was drained and packed 4 years ago. Recently I had a fistula in February that they have kept open with s seton and now this. I have been in agony since last weekend with it and is excruciating when I have a Bm (and go around 7 times a day:-(). Does anyone know if it's linked to the seton and what I can do to ease the pain please?
Thanks in advance
Sally x
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Re: New to the forum/Anyone else have a J-pouch?

Postby Mypoorbutt » 22 Apr 2017, 01:54

Hi I don't have a J pouch
I got my fissure through multiple BMs due to crohns and IBS. I don't know if your fissure is linked to the seton stitch or due to the amount of times you go.
Have you been prescribed any creams like GTN or diliatzem as these are really helpful in lessening the pain of the spasms.
Also sitz baths after a BM help and try and clean with a shower head and not toilet paper.
I'm sorry your having to suffer this on top of everything else but with the right treatment they do heal.
Good luck
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Re: New to the forum/Anyone else have a J-pouch?

Postby Sally » 22 Apr 2017, 06:16

Thank you for your reply mypoorbutt. They have given me cream but still waiting for it to come up from pharmacy lol so not sure what it is yet. What is a sitz bath plz as never heard of them? I do wash with wipes rather than wipe with paper. Thank you for your reassurance x
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Re: New to the forum/Anyone else have a J-pouch?

Postby Mypoorbutt » 22 Apr 2017, 11:05

I'm sure once you get the cream you will feel a reduction in the pain level.
Sitz bath are something you can pop over the toilet to soak your behind in hot water as it really relaxes the sphincter. I just get in a normal bath as hot as I can and it does help with the spasms. x
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