Re: Fred's UC flare up

[Guest guest]

,

This same thing happened to my daughter Suzanne- they could not get her off of

the steroids without causing another flare up. It's a long process ... hang in

there.

She also has had normal liver enzymes during a flare up. She now has a j-pouch

and her enzymes have not been normal since about 3 months after the surgery. Go

figure ...

LINDA

(Mom of Suzanne, 18; IBD 1/04; PSC 3/04; jpouch 2/07)

-------------- Original message ----------------------

> Happy New Year everyone! Hope and pray for progress on the PSC front

> (and all its accompanying problems!)

>

He had lowered his steroid dose a little faster

> than the dr. wanted him to,

> He's upped the steroids to 20 mg. a day from the 5 mg. he was on, and is

> back on the 9 Asacol (as of two weeks ago).

> If anyone can relate or offer suggestions/advice, we'll take it!

>

> BTW, interestingly, his liver enzymes over the last few months when he's

> had really bad UC, have been NORMAL. They have not been normal in over a

> year, even on high dose Actigal (Urso). Anyone else have that happen?

>

>

> Wife of Frustrated Fred, PSC 03/04, UC 03/06

>

Happy New Year everyone! Hope and pray for progress on the PSC front

(and all its accompanying problems!)

Speaking of, Fred was doing so well but two weeks he started having

another UC flare up. He had lowered his steroid dose a little faster

than the dr. wanted him to, and was only taking 6 Asacol instead of the

9 a day he should have been taking. He'd been watching his diet pretty

carefully though; very little fat. And he cut out the yogurt he was

eating (type of yogurt specifically recommended for UC patients). So who

knows if the faster reduction of steroids combined with the lower dose

Asacol, and/or yoghurt caused this or not.

He's upped the steroids to 20 mg. a day from the 5 mg. he was on, and is

back on the 9 Asacol (as of two weeks ago). He's also taking pretty

powerful probiotics - started at two packets of the VSL#3 a day 12 days

ago. For the last five days he's been taking four packets a day. There's

been no improvement, and things are actually a little worse. See info on

VSL#3 at: http://www.crohns.net/page/C/PROD/VSL4000.

If anyone can relate or offer suggestions/advice, we'll take it! He's

very frustrated and somewhat discouraged. Is doing everything he knows

to do. I told him the research on VSL#3 says it could take a month to

see improvement, but it's not fast enough for him!

BTW, interestingly, his liver enzymes over the last few months when he's

had really bad UC, have been NORMAL. They have not been normal in over a

year, even on high dose Actigal (Urso). Anyone else have that happen?

Wife of Frustrated Fred, PSC 03/04, UC 03/06

[Guest guest]

Dear ,

Sorry that Fred is having a UC flare. I know that while I was so sick before Tx my UC was not good and I ended up having to take Imuran with the Asachol. But so far with fingers crossed, my UC has been under control since the TX. Having said that, I have continued my Asachol twice a day regimen. Sometimes a Prednisone Taper takes awhile to work. 5mg. of Pred is about what our body manufactures every day so that dose is really very small. I have never noticed that food was a factor in my flares. But the thing is, if you are having a flare stay away from dairy products, they irritate the colon. Also like Arne said, if his symptoms are more Proctitis like the enemas are really helpful. Tell Fred I hate it for him but it will get better.

Hope all this helps.

Also 1 point - have you asked the Tx nurse if it's ok to use Probiotics? I have a feeling you may need to check up on that. Especially as he is taking Immunosuppresants.

Take Care,

Ali

Save Life - Be A Live Donor and An Organ and Tissue DonorAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787also check out :http.//health.groups.yahoo.com/group/Livertx-PSC/It's a new sister site from the PSC Support Group that is for transplant issues.www.pscpartners.orgPSC Partners Support GroupBuy Notecards and Support Research for PSCSee AOL's top rated recipes and easy ways to stay in shape for winter.

[Guest guest]

-

Did Suzanne have a restricted diet while having her UC flare ups?

There are so many perspectives on UC diets.

Fred is now going no gluten, and I've bought some rice flour to make

bread, although the Specific Carbohydrate Diet adherents don't even

allow rice or potatoes. (We're not following that one - I'm afraid

Fred would be dead!)

> ,

> This same thing happened to my daughter Suzanne- they could not get

her off of the steroids without causing another flare up. It's a long

process ... hang in there.

>

> She also has had normal liver enzymes during a flare up. She now has

a j-pouch and her enzymes have not been normal since about 3 months

after the surgery. Go figure ...

>

> LINDA

[Guest guest]

My experience with steroids (prednisone, for asthma) is that the longer you take

it, the longer (and more gradual) the taper has to be. I " ve had similar

experience with 5-ASAs. I've taken sulfasalazine (Azulfadine) for most of the

last 30 years - never more than 2gm/day (4 500 mg pills). The only time I've

been off it was on a trial for Pentasa in the early 80s. Pentasa was not

effective enough to keep my UC quiescent, so we supplemented with Cortenemas

(retention enema - very effective for me). The biggest benefit of cortenemas is

that they are a local application of steroids, and avoid the side effects of

systemic (oral) corticosteroids. Has he considered those?

20 mg doesn't sound like enough to take care of active inflammation. For some

people, that's just a maintenance dose. My former boss has a lung condition

that requires him to take 20 mg/day just to stay even. His taper took 4 months,

in 1 mg increments (from 60 mg/day).

Many people with UC do not tolerate dairy products during a flare. Side effects

from Asacol should be minimal, if any. I hope there's a good reason he backed

off on the dosage (counter to Dr. orders). I'd be willing to be the Dr. has

seen a LOT more UC than Fred.

Hope he feels better soon.

Arne

[Guest guest]

Ali-

Fred has not had a transplant. He's been off dairy for a long time.

Only thing dairy he was eating was yogurt which was a very specific

kind to help UC. But he's been off that for a couple weeks.

Not sure what proctitis is, dr. hasn't mentioned that as a problem.

However, it appears to me from yours, Arne's and 's posts that

Fred lowered his prednisone too fast - and the reason for that, Arne

asked? I think it's a guy thing - he wanted to be in " control, "

although Fred says it's because he hates to take pills. (yeah, uh,

that's a " control " thing!) I said " do you prefer a flare up of colitis

instead? " He said he's learned his lesson! One is MORE in control

taking pills to control colitis than when one has a flare up!

Wife of Formerly Non-Compliant Fred, PSC 03/04, UC 03/06

>

> Dear ,

>

> Sorry that Fred is having a UC flare. I know that while I was so

sick before

> Tx my UC was not good and I ended up having to take Imuran with the

Asachol.

> But so far with fingers crossed, my UC has been under control since

the TX.

> Having said that, I have continued my Asachol twice a day regimen.

Sometimes

> a Prednisone Taper takes awhile to work. 5mg. of Pred is about what

our body

> manufactures every day so that dose is really very small. I have never

> noticed that food was a factor in my flares. But the thing is, if

you are having a

> flare stay away from dairy products, they irritate the colon. Also

like Arne

> said, if his symptoms are more Proctitis like the enemas are really

helpful.

> Tell Fred I hate it for him but it will get better.

> Hope all this helps.

> Also 1 point - have you asked the Tx nurse if it's ok to use

Probiotics? I

> have a feeling you may need to check up on that. Especially as he is

taking

> Immunosuppresants.

> Take Care,

> Ali

>

>

[Guest guest]

-

One of the MOST positive things I heard , 17, say to GI doc - "I will take the Asacol three times a day... to avoid Prednisone again". I agree 100% that some people need to wean off Prednisone very slowly. I also think, from and my mother's experience, that the Asacol "as ordered" is very important for control (of colitis).

Good luck as Fred tries to "re-gain" colitis control!

Joanne H

-----Original Message-----From: [mailto: ]On Behalf Of slhussey2001Sent: Saturday, December 29, 2007 4:32 PMTo: Subject: Re: Fred's UC flare up

Ali-Fred has not had a transplant. He's been off dairy for a long time.Only thing dairy he was eating was yogurt which was a very specifickind to help UC. But he's been off that for a couple weeks.Not sure what proctitis is, dr. hasn't mentioned that as a problem.However, it appears to me from yours, Arne's and 's posts thatFred lowered his prednisone too fast - and the reason for that, Arneasked? I think it's a guy thing - he wanted to be in "control,"although Fred says it's because he hates to take pills. (yeah, uh,that's a "control" thing!) I said "do you prefer a flare up of colitisinstead?" He said he's learned his lesson! One is MORE in controltaking pills to control colitis than when one has a flare up!Wife of Formerly Non-Compliant Fred, PSC 03/04, UC 03/06>> Dear ,> > Sorry that Fred is having a UC flare. I know that while I was sosick before > Tx my UC was not good and I ended up having to take Imuran with theAsachol. > But so far with fingers crossed, my UC has been under control sincethe TX. > Having said that, I have continued my Asachol twice a day regimen. Sometimes > a Prednisone Taper takes awhile to work. 5mg. of Pred is about whatour body > manufactures every day so that dose is really very small. I have never > noticed that food was a factor in my flares. But the thing is, ifyou are having a > flare stay away from dairy products, they irritate the colon. Alsolike Arne > said, if his symptoms are more Proctitis like the enemas are reallyhelpful. > Tell Fred I hate it for him but it will get better.> Hope all this helps.> Also 1 point - have you asked the Tx nurse if it's ok to useProbiotics? I > have a feeling you may need to check up on that. Especially as he istaking > Immunosuppresants. > Take Care,> Ali > >

[Guest guest]

Dear ,

I realized my mistake as soon as I hit the send button. I had you confused with another person!!!! Please put it down to a senior moment. I like to tell people that they shut the respirator off by mistake and then turned it back on when they did the Tx! OH WELL

But for sure don't mess with the slow taper. It will only prolong the agony.

Ali

Save Life - Be A Live Donor and An Organ and Tissue DonorAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787also check out :http.//health.groups.yahoo.com/group/Livertx-PSC/It's a new sister site from the PSC Support Group that is for transplant issues.www.pscpartners.orgPSC Partners Support GroupBuy Notecards and Support Research for PSCSee AOL's top rated recipes and easy ways to stay in shape for winter.

[Guest guest]

Thanks Arne and everyone for the input and info. The side effects of

the steroids concerned me so I made a decision and shortened the

taper from 3 months to two months. Apparently a mistake and the Dr

does know more than I. Won't do that again.

Also, still hoping the VSL#3 probiotcs will have some positive

impact.

Fred

> My experience with steroids (prednisone, for asthma) is that the

longer you take it, the longer (and more gradual) the taper has to

be....

> Many people with UC do not tolerate dairy products during a

flare. Side effects from Asacol should be minimal, if any. I hope

there's a good reason he backed off on the dosage (counter to Dr.

orders). I'd be willing to be the Dr. has seen a LOT more UC than

Fred.

>

[Guest guest]

I've done the VSL#3 and it definitely does have an effect. When my UC

started flaring up for the first time since the transplant, I started

the VSL#3 and it helped significantly, but didn't get rid of it. I

switched to Pentasa, and that helped a bit more, but still didn't get it

under control, so now I'm trying both at the same time and hopefully

that will get it under control. So far I haven't had to go on

prednisone, and hopefully I can keep it that way.

athan

[Guest guest]

Ali-

Yeah I know all about senior moments - and I can't use a respirator

story for an excuse, so I use " menopause. "

BTW, tried to link to the transplant link you have listed by copying

and pasting it - and it did not work. I know you've sent me numerous

links to try and connect to the site, but I'm not able to ever make it

work. Don't know if others have trouble or not.

>

> I realized my mistake as soon as I hit the send button. I had you

confused

> with another person!!!! Please put it down to a senior moment. I

like to tell

> people that they shut the respirator off by mistake and then turned

it back

> on when they did the Tx! OH WELL

> But for sure don't mess with the slow taper. It will only prolong

the agony.

>

> Ali

> Save Life - Be A Live Donor and An Organ and Tissue Donor

>

> Ali Lingerfelt-Tait

> 180 Blackberry Inn Rd.

> Weaverville, N.C. 28787

>

> also check out :

> _http.//health.groups.yahoo.com/group/Livertx-PSC/_

> (http://www.//health.groups.yahoo.com/group/Livertx-PSC/)

> It's a new sister site from the PSC Support Group that is for

transplant

> issues.

>

> _www.pscpartners.org_ (http://www.pscpartners.org/)

> PSC Partners Support Group

> Buy Notecards and Support Research for PSC

>

>

>

> **************************************See AOL's top rated recipes

> (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

>

[Guest guest]

Hi

Not sure where you're located or the availability of gluten-free bread

in your immediate vicinity, but if you're planning on baking, take a

look at Bette Hagman's books for tips on baking GF foods. She has some

excellent recipes. And if you get seriously into baking GF, then check

out the book by Reilly. Her baked goods recipes are a little

more refined than Bette Hagman's -- more for the discriminating baker.

And for some helpful info from the folks with celiacs, here's a link

you can use for more recipes or simply to source out GF foods:

http://www.celiac.com/

[Guest guest]

athan, how much VSL#3 were/are you taking and how long b/f it

started working?

Fred

>

> I've done the VSL#3 and it definitely does have an effect. When my

UC started flaring up for the first time since the transplant, I

started the VSL#3 and it helped significantly.....

[Guest guest]

Right now I'm taking three packs a day. The reason I started it again

was because I went on antibiotics for a sinus infection and that made

the UC much worse. Taking the VSL#3 helped pretty fast this time...

within 24 hours I was getting better, and I'm still improving in spite

of still being on antibiotics.

I think when I started taking it initially it helped pretty quickly too

but not quite as fast... it was several days before I noticed a major

difference, and like I said, it didn't totally get rid of all symptoms.

I went from watery diarrhea and lots of cramping/chills/fever to just a

bit of cramping and no diarrhea.

I guess my thinking now is that perhaps the antibiotics I'm taking now

will help get rid of any harmful bacteria in my gut, so continuing to

take the VSL#3 may allow the good bacteria in it to outcompete the bad

ones even better. I'll let you know how it goes!

athan

[Guest guest]

Interesting. Thanks & please do let me know how it goes.

Fred

>

> Right now I'm taking three packs a day. The reason I started it

again was because I went on antibiotics for a sinus infection and that

made the UC much worse....

[Guest guest]

-

Went to the site and it does look helpful. Fred's never been tested

for celiac disease but perhaps he should be. In the meantime, he's on

a gluten free diet. Today he had only ONE visit to the bathroom -

although it was diarrhea.

You know they say opposites attract and it is OH so true, even

apparently regarding poop. All I have to do is sneeze and Fred will

run for the bathroom. Me? I need a stick of dynamite to get me going.

Constipated wife of Fred, PSC 03/04, UC 03/06

>

> Hi

>

> Not sure where you're located or the availability of gluten-free bread

> in your immediate vicinity, but if you're planning on baking, take a

> look at Bette Hagman's books for tips on baking GF foods. She has some

> excellent recipes. And if you get seriously into baking GF, then check

> out the book by Reilly. Her baked goods recipes are a little

> more refined than Bette Hagman's -- more for the discriminating baker.

>

> And for some helpful info from the folks with celiacs, here's a link

> you can use for more recipes or simply to source out GF foods:

>

> http://www.celiac.com/

>

>

>