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

Postby lefthanded » 09 Jul 2013, 11:14

I developed AF following a complete colectomy for severe ulcerative colitis in 2002-03.  My second of four related surgeries they constructed an ileal-anal reservoir (J-pouch) and I had a stoma and an ileostomy for a year before reversal.  I have lived a fairly, but not perfectly, continent life since 2003, not perfect, though, with nighttime leakage and bouts  of incontinence, AF and flare-up.  When the colon is removed, all the stool that is passed is highly caustic, so you add fierce acid burn to the fissure pain (think paper cut and lemon juice, constantly!). In addition to the Crohn's diagnosis given shortly after my major surgery to remove the colon I also developed central nervous system inflammation called transverse myelitis (TM) which contributes to my issues with AF, as well as creating spasticity in the lower legs and feet.  Some nights I sleep in very tiny stretches between long periods of spastic pain!    
I have undergone LIS once, but now my CRS wants to try Botox to relax my ever tightening sphincter.  I have been using diltiazem/lidocaine compounded for several years now.  I buy nitrile gloves by the case.  
I find sitz baths to be useless, because getting in and out of a tub seems to negate any relaxation I achieve.  So does drying off,  apply new ointment, and moving again!  I do take vicodin, ativan, and bentyl, and I am a mmj patient.  MMJ helps with pain, spasms, and if the pain is severe breakthrough pain (Like I am having at this very moment) I take enough mmj to get to the point where I am distracted from the severity of the pain and can almost tolerate it.  Using this much medication, sleep is often the effect, if not the real goal.  I have been dealing with this pain for about 4 hours now, and may finally be able to relax enough to sleep again.  I can not exist on the 4 broken hours I have had so far since last night . . .
Before U/C and my surgeries and then side-effects/complications, I worked as a claims examiner in worker's compensation.  I was placed on disability due to continence issues, urgencies, and my terribly long commute.  I have been officially "retired" on disability for 11 years now.  I picked up my art after decades of doing other things in life to use it as rehab.  It helped for several years, but over the last two the pain is getting worse, and along with it depression and loss of interest/inspiration.  
I came here for the common issue, the understanding, and to find out if there are other things I haven't tried yet.
Last edited by lefthanded on 11 Jul 2013, 12:41, edited 1 time in total.
Reason: Add descriptives to title
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Re: New to the forum/Anyone else have a J-pouch?

Postby Guest » 09 Jul 2013, 11:53

Hello lefthanded
We welcome you with open arms in here as I know it feels good for you to relay your story to us.
It takes strength courage and fortitude to be able to go through the many things you're facing, so just being able to get out of that bed each day is a blessing.
Its always good to remember when you want to throw in the towel and are feeling down that there are many people, loved ones, friends, and everyone here on this forum thinking of you and hoping you will pull through.
Your doing exactly what it takes to come here and talk with us to help you rise above any despondency, and we commend you for that.
As for your AF, perhaps the actual sitz bath that sits right over your toilet will work for your case if you haven't already tried that. It sure will cut down on your having to climb in and out of the tub.
Good to hear your in a place that allows MMJ and that it helps with the spasms, who new. I hope the botox route will work for you as it sure has for many in here.
You will surely receive more info, understanding and encouragement here in the near future so enjoy your stay here.
GL & God bless you
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Re: New to the forum/Anyone else have a J-pouch?

Postby lefthanded » 11 Jul 2013, 13:30

I forgot to mention that most people with j-pouches pass stool 5-7 times a day . . . I am on the high side with 7-15.  This tends to keep the AF aggravated, not only because of the terrible frequency, but also the acidity of stools that do not have the benefit of passage through a colon!  
This combination of frequency, the caustic nature of stools, and the AF have left me with less-than-perfect continence, and any leakage has to be cleaned immediately, or I get skin breakdown similar to chemical burns.  This in turn causes inflammation, which causes increased spasms, and 'round and 'round we go . . . . Image 
And yes, I have tried everything.  
I also forgot to mention that I have a stricture at the anastomosis where the ileal pouch was reattached to the anus, and lots of scar tissue that I must stretch and massage regularly to keep it from narrowing so severely that I can't pass stool.  It is for the most part a full-time job . . . hence the fact that I have been deemed disabled from holding any kind of a real job for over a decade.
And I also have carpal tunnel syndrome, worse in my dominant hand (left hand) -- the one I glove up for bathroom duty! Surgery to correct it is out of the question, as I could not fathom going for days without dilation, use of my diltiazem ointment, and not to mention the difficulties keeping the area clean. Needless to say, I feel screwed.
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Re: New to the forum/Anyone else have a J-pouch?

Postby Guest » 11 Jul 2013, 14:20

Hi lefthanded:
My mom does not have a j-pouch from an  ileostomy-(small intestines), but she has a stoma from an colostomy-(large intestines).
She got this by her years of bad diet habits that gave her an impaction that literally burst her intestines sending her to the ER.
Yeah, for the most part she has no problems, but do from time to time complain about irritation and infection. When I go to visit her i cant believe the amunt of time she is in the bathroom-(even for a woman). I sometimes thinks she fell asleep or something. But its just because of the extra work she has to do with changing the bag and what not.
I wish there was someone here who had a j-pouch like you. Just to mention also my mom went through many years of dealing with anus problems too, with hemmy's. And she had a lot of other issues like your going through, so in a indirect way, I know your trials.
Youtube, go figure has a lot of self help vids on ways to treat your J-pouch, go here if you haven't already....
https://www.youtube.com/results?search_query=j-pouch+care
Also there is a forum for people with J-pouches that will sure help you, again if you do not already know about this, go here....
http://www.j-pouch.org/
BTW, did you say your procedure was reversible, and or are you planning to have it reversed.
HTH GL
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Re: New to the forum/Anyone else have a J-pouch?

Postby lefthanded » 11 Jul 2013, 14:57

Already been a member of the j-pouch forum for years.  I was hoping someone here had the "magic pill" for dealing with AF and the frequency of the j-pouch lifestyle.  
My doctors all concur I am in the 5-15% that did not have a favorable outcome following a successful surgery.  That said, my pouch works great . . . even to the point of occasional formed and firmer stools.  Of course, those lead to their own issues   . . . :roll:
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Re: New to the forum/Anyone else have a J-pouch?

Postby jr2 » 12 Jul 2013, 00:11

Hi lefthanded
I'm so sorry that you have bern suffering for so long with so many health issues. I can relate to having multiple health problems. For years doctors have wondered if I have Crohn's disease. Diagnosis has been a challenge. Though I can't relate to the J-pouch, I can relate to the caustic diarrhea every day, multiple times a day. I had my gallbladder removed three years ago and suffer relentless bile acid diarrhea virtually every day. Needless to say the fissure situation is pretty bad and has been for a couple of years.
I wonder if you've ever tried something like cholestyramine to try and decrease frequency of your BMs? For me, it tends to firm up things too much for me to be able to take it regularly, but on my worst days it can really help. People with Crohn's disease often have trouble with malabsorption of bile acids.
Also, coating the anus with a barrier like Vaseline or Desitin can help to cut down a bit on the exposure of the fissures to the irritating stool.
Have you ever considered going back to the ileostomy?
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Re: New to the forum/Anyone else have a J-pouch?

Postby lefthanded » 12 Jul 2013, 01:59

I did not do well with my ileo.  By the time I had my reversal, I had an open wound about the size of my palm surrounding my stoma, and barriers would not stick.  I had some of the most experienced ET nurses trying everything to help me keep a barrier attached, but there were some days all we did was change barriers. Much of the problem was the scar tissue perverting the shape of my abdomen from within, pulling my stoma this way and that, and making it impossible to get a seal.  We used everything, including double-Eakin seals and nothing worked.  I could not venture far from home, or go back to work, because I had nowhere to change barriers if I leaked.  I was pretty miserable, and was not thriving nutritionally.  If a doctor could promise me the perfect stoma and the perfect ability to wear an ostomy appliance, I would seriously consider it . . . but I would also be losing 12-18" of small intestine in the process.  I know . . . bleah!
I, too, live without a gall bladder (2009) and yes, I have tried cholestyramine.  I bloated up like a balloon!   In fact, it was during my laproscopic procedure to remove my gall bladder that my surgeon noted the horrible abdomen full of adhesions I possess, and said I would not ever want to have a laparoscopic procedure again.  He drew on my belly just exactly where my small intestines were basically glued right to my abdominal muscles (what's left of them!) and where no surgeon should ever stick a scalpel!  Same surgeon knows I will be calling him when my two hernias or my adhesions cause the blockage that will necessitate the dreaded surgery.  He and my CRS said they would work together, but neither recommends I schedule it, but instead wait until it is absolutely necessary.  So in the meantime I live like this . . .
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Re: New to the forum/Anyone else have a J-pouch?

Postby bgd » 12 Jul 2013, 02:12

Hello!
This might sound totally useless and stupid, but there was a member on the board who basically eliminated pooping completely by doing several colemas every day. I imagine that would also reduce acidity by mixing with water.
Furthermore, I'm guessing there might also be some dietary changes that could harden stools and reduce acidity? Opposite of what most of us are doing. Like more meat, less fiber?
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Re: New to the forum/Anyone else have a J-pouch?

Postby lefthanded » 12 Jul 2013, 10:07

Already doing more meat, less fiber.  I can not tolerate high residue foods, like whole grains and seeds and nuts.  (Boo . . . I used to eat them all!)  Nor can I eat raw veggies.  I have been tweaking my diet for over a decade now, trying to reduce the acid, but the digestive system produces it for a reason, and you can not completely eliminate it.  
A j-pouch can handle some irrigation, but once your colon is gone, your transit time is greatly reduced, and your ability to recapture fluids is almost gone.  I would likely dehydrate quickly if I tried the kind of flushing a colema would produce.  It could also affect absorption of nutrients, which I also have to monitor by regular bloodwork.
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Re: New to the forum/Anyone else have a J-pouch?

Postby owmybum » 12 Jul 2013, 10:36

Hi left handed,
I've not got any advice for you I'm afraid.... You are dealing with so many complex health issues, that I have little knowledge about! But I would like to give you a warm welcome to the board. By reading back through old posts, you never know, you might find something useful! You may need a spare week or so to read it all though! Lol
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