Re: Never been taken down so hard {J-Pouch}

[Guest guest]

lee,

thanks for tha response so fast, it was soooo good to

hear that the cramppy feelings might be 'normal'. i

really havetn been eating much yet, very small meals.

Last night was better for me and i think that its

becasue i didnt have anything my mouth about 4 hours

prior to bedtime, so i had a little better sleep, but

it was still awful. Im going to experiment a bit to

see what works, will pass along any info and would

love the same from bill. Im sure that the gurues will

ring in soon with their always great advice.

dan

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[Guest guest]

,

I have no experience with J-Pouches, but I wanted to know that I'll be

praying for you and sending good thoughts your way as you try to learn

how to handle your new body after surgery. It sounds like you've had a

rough time of it - I'm sorry.

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005

>

[Guest guest]

Dan,

My husband's takedown was in December and even though what I am

about to say may not sound like it, he is very grateful to have had

the surgery. He has more control than before, and frankly he hated

the ileostomy. He still " goes " at least 8 times a day, usually

more. They told us that the liver disease causes things to be

different. Let me tell you about a couple of products that will

save your rear. The first is called Calmoseptine. It is the most

powerful moister barrier. Plus it is made by the people who make

Calomine lotion. The second wonder cream is called Nupercainal.

uses this when the butt burn gets really bad. It numbs

everything and helps with itching. Trust me, I wish we had known

about these two products in the beginning. His colorectal surgeon

told him about them eventually, but not before we tried some other

useless products. Both of these products are over the counter, but

our pharmacist has to special order them for him. In addition, he

takes Lomotil, Immodium, and Colestid. The Lomotil and Immodium are

to try to limit the number of trips and the Colestid is suppose

to " thicken things " thus helping with the butt burn problem. Also,

take lots of warm baths and be careful of what type of toilet tissue

you use. I'm so sorry if this is too much info! Let me know if I

can be of any help. Congratulations on ridding yourself of a

diseased colon!!!

wife of

UC and PSC 1999

J pouch 2004

[Guest guest]

No such thing as too much info, thanks for the info

. I could with having to make ten trips a day, its

the crappy feeling happens so often that it hard and

the interruptions in my sleep. But time heals all, i

hope, lol.

dan 22 psc, marital problems between the bionic bowel

and I, but we are seeking help.

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[Guest guest]

" dan 22 psc, marital problems between the bionic bowel

and I, but we are seeking help. "

Sounds like you have a great additude. You made me chuckle. If you

haven't been there already, the j pouch support group can be helpful,

but they are a little scary. You start to imagine that you have all

sorts of problems from reading theirs!

Oh I was curious, did your MELD score go up after surgery? 's

went from a 11 or so to a 17 in a few months, but it was back down to

a 12 last week. We're not sure what is going on there, but at least

it got him listed for transplant.

wife of

[Guest guest]

Hi Dan,

I am 11 months post takedown and it hasn't been so long that I don't

remember what

you're going through. After my takedown I was going 20-24 times per

day (which is about

once per hour). And the first few weeks I had horrible spasms and

contractions. But it does

get better. My surgeon told me it would take up to a year to adjust

to the jpouch. I agree

with that Calmoseptine and Nupercainal are the best ointments.

Use these ointments

all the time--better to prevent sores than try to heal them

afterwards. One tip I learned

was to use moistened tissue and daub, not wipe to prevent skin

erosion. When you are

hitting the bathroom so often it is very important to do what you can

to maintain skin

health around the anus.

Another thing to be aware of as a PSC patient is the increased

susceptibility to pouchitis.

The statistics are something like 70% of PSC patients will get

pouchitis at some point

compared to 30% of non-PSCers. You might try a probiotic such as

Flora-Q (the best price

I've found is on the website Americarx.com-just search for Flora-Q).

The theory is that if a

good bacterial balance in your jpouch is maintained, the bad bacteria

will not overtake the

good and cause pouchitis. Cipro or Flagyl is usually prescribed to

deal with a bout of

pouchitis.

A lot of what I've learned in how to deal with the Jpouch I've found

at the website

www.jpouch.org. They have a discussion group that is VERY helpful. I

feel a little funny

recommending another support group on the PSC website. But they

really helped me to

get through that first year with my jpouch. A person named Jan Dollar

responds to most

posts and she is by far the most knowledgeable person when it comes

to jpouch issues

(she is a retired RN). I don't know how she finds the time, but she

always responds. She

(and others) can let you know if you are experiencing something that

is " normal " during

the adjustment period or something that sounds like it requires a

doctors care. Also, you

should also call your doctor if you are concerned.

Take care and hang in there..it does get better.

Dave in MT (UC 1978, PSC 1984, first PSC symptoms 2003, Jpouch 2004)

[Guest guest]

Dan

I just sent an earlier e before I downloaded this batch. Glad you are at

home. Yep the bowel wake up part seems to be what makes this whole thing a

drawn out experience. The half hour BM drill 24-7 in the early days was what

caught me off guard too. It does improve over time and rapidly in the first

2-6 weeks, but we are still talking W E E K S of time. The

" conditioning " of the pouch time was absolutely my least favorite. This is

the first year when the pouch actually doubles (or more) in size as plain

old pressure causes it to expand. You can expect to get very near normal for

the new pouch of 4-8 times/ 24 hours within the first 6-8 weeks, so keep

your eye on that ball!

Yes, being up numerous times per night is draining. The first several

weeks at home, as you are probably now all to aware are no picnic. As I said

before, take the pain meds that you need, they help the overall picture!

Did the hospital give you a recommended diet during step one or two? If

not I can send you what I have. Also don't be a " Grazer " nibbling your way

through the day, this just leads to the need to have BMs all through the

day! I found carbonated anything very difficult to handle in the early

months, and decided it had to go, as it turned out, temporarily. The urgency

you describe is not easy to describe, particularly when most of us UC types

figure we've " been there done that " for years. I found walks aggravating to

that early on. They may also want to add an antimotility drug(s) to your

regiment. These slow down the bowel, and the cramping. This is a good

follow-up question.

I did and still do a lot of " holding my breath " . I would disagree wit you

however in the sense of the dread that the worst is yet to be. I think you

will find that it has been a good choice in the long run, and this is easier

to appreciate once you get the first 60 days post operation #2 behind you.

Prior to getting chronic pouchitis I got the Bms down to 4-5 per 24 hours

with only 1 at night. Also ask your Doc if they recommend anything in terms

of Pouchitis prevention since with PSC, you will be at an increased risk

here. Sorry to hear the deal has fouled up your ascites. Let me know what I

can do

jd, 44

UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3

ston City, IL

krmpotich@...

Never been " taken down " so hard {J-Pouch}

> I had the take down last friday, it went well though

> i needed plasma pre and post surgey. The recovery in

> hospital wasnt quite as fun, i spent seven nights in

> there, a few of which were awful. I guess my bowels

> take longer to wake up cause i tried to take fluids on

> monday. the end result of that that a very distented

> stomach, swollan hands feet and legs. I guess my small

> amount of asicited got much worse after the surgery.

> Im sure there are tons of more details that i could

> give but i cant think of them now, anyone who wants to

> know just ask, like im about to.

>

> I know there are a lot of jpouchers on here, only i

> know by name is my good friend JD. Hi JD, its done but

> i have an awful feeling that the worse is only to

> come. Granted last night was a little better, but the

> first two nights out of hospital were hell, I think I

> honestly had to hit the bathroom every half hour all

> night. That cant be right is it? And the worse part is

> that i get this awful awful crappy feeling accompanied

> by a urge to go. Sometimes i can just hold my breath

> for thirty seconds and it passes but most times i have

> to make a dash. can that be right? It is starting to

> put me off eating. any suggestions on something of

> substance that i can eat for meals that has the

> nutrition and the stability in my stomach?

>

> Its not all bad though... time for my precocet!

>

> Thanks all and JD

>

> Dan 22 psc, juvenile j-pouch that is misbehaving but

> trying to learn

>

>

>

> ____________________________________________________

> Yahoo! Sports

> Rekindle the Rivalries. Sign up for Fantasy Football

> http://football.fantasysports.yahoo.com

>

>

>

>

[Guest guest]

, I hear you every step of the way during your

surgery and post recovery. (otherwise, been there,

done that).

You are much younger than I, ok, much much younger

than I when I went through the surgery.

Not to sound like a lecture but maybe this analogy

will help you understand the process you are going

through.

Your colon was a highly specialized organ. It was the

original model in your body and when you were born,

you weren't able to utilize it well. Thus diaper

detail for your parents. Your colon and your body and

mind had to learn the signals...that did not happen

overnight. Most like it took 2 plus years for you to

catch on.

Now, your colon is gone. You have part of your small

intestine that was yanked from it's highly specialized

job and thrown into a make-shift colon.

****You can't expect the jpouch to function exactly

like the colon did...hell, it didn't even get training

from it's predecesor. It is sitting there

thinking...what the heck happened here and what am I

supposed to do now.

When I first came home from take-down, I kept a log of

how many times I had to go potty. Not that I am

morbid (ok, yes I am morbid), but I wanted to see

tangible results. So I logged for 6 weeks.

The first night home it was like 22 times, then 20

then 11, then 18 ......on and on, and after a few

weeks I was down to 7-8 with a night trip or 2. Then

by week 6, I was down to 3-4 and by 6 months, 2-3.

You are doing the right thing by trying to stall it

off even if for only 30 seconds. I too did that, only

I would stand in the bathroom close the the toilet in

case it backfired (no pun intended). AFter a while I

was able to hold off going for 30 or more minutes.

Now, if I am out and about and very occupied, I can

find myself not going or even thinking about going for

6-8 hours.

My message is give it time. You are still in the

recovery from surgery stage. It does get better and

better.

Oh yes, try the BRAT diet. Banana's, Rice,

Applesauce, and Toast. And Marshmallows. These are

all things that slowed progression for me.

Baudoux-Northrup

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[Guest guest]

,

Like so many others on this great site, you help more

than you can even imagine. Thanks for the advice, my

wonderful better half is on the way to get

marshmellows and applesause as i type.

Dan 22 psc, Domestic disputes with my new jpouch (she

winning as of now)

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