IBD flares; how long 'til relief?

[Guest guest]

Wyatt's meds for his IBD flare are not getting things under control yet

(or he has side effects like crazy -one, the other, or both). How long

does it take to get an IBD flare under control? Wyatt's issues are all

upper GI related, not lower. He did have some 'lesser' lower GI

trouble that has, thankfully, calmed down --but not the more

troublesome upper yet. I was hoping the new school year would start up

for Wyatt with some real relief --doesn't seem to be heading that

direction. His doctors are aware of his symptoms, but I wanted to ask

the board what their experience has been.

[Guest guest]

Can you describe the " upper GI " symptoms Wyatt is having?

Joanne H

(, Ca., mom of , 17, UC/PSC 2-06)

>

> Wyatt's meds for his IBD flare are not getting things under control

yet (or he has side effects... Wyatt's issues are all

> upper GI related, not lower.

[Guest guest]

> Can you describe the " upper GI " symptoms Wyatt is having?

Hi, Joanne.

Sure can: Abdominal pain, bloating/distention (often wakes up visibly

bloated which = no appetite, too, of course), queasy stomach (which

also = no or low appetite), nauseous, heartburn (less often),

gassy/burpy for the most part. He very rarely now has reflux --that

one has been pretty much eliminated. He did had some lower GI

issues, but those have cleared up almost completely. All he has left

in the lower is 'soft' poo that bubbles like a hot tub -super gassy

and some floating white solid dots (drs don't know what those are,

but they seem innocuous enough). He had black spots, diarrhea and

increased frequency, with some lower abd pains, but those have

happily gone away. We think the diarrhea was a side effect to his

double dose of prevacid. Since going down to a normal dose, that's

cleared up.

The bloat/distention, gas and the queasy/sick tummy feeling (like

having the stomach flu) are what bother him more than the rest and

are always around. The abd pains are less frequent (every

other/every third day) and though they bother him less, he'd like to

see them go away all together (same w/ nausea and the rest). The

bloat is constant, all and night, but varies from mild to severe

(from a slightly blown up balloon appearance to something that looks

blown past capacity) --all the symptoms vary from mild to severe, of

course. We track his symptoms and diet daily and can't seem to find

a 'culprit' for when it's worse/severe. It's not the desirable way

to start of a new school year --feeling like you have the stomach flu

and looking like a party balloon, ya know?

He's on Pentasa, Metronidazole, Prevacid, Allegra, Zyrtec, and

Singulair. To try to help the bloat he's starting Hyoscyamine

tonight, too (it's more for IBS, but by relaxing/slowing things

inside local GI thinks it will help some of the bloat and gas --wants

it taken at night in hopes Wyatt won't wake up bloated, which is usu

when he's got the worst distention). --I'm hoping to find out from

others experiences that he's typical for getting a flare under

control and that relief is just around the corner (for " typical " ).

--Meghan, mom to Wyatt -12yo, fap, psc, uc-crohn's, a/i hives

[Guest guest]

--I'm hoping to find out from others experiences that he's typical for

getting a flare under control and that relief is just around the

corner (for " typical " ).

Thought I'd add that his dr say his bone and joint pains (which have

increased from occasional to daily) should go away when the flare is

under control. Is that what others experience has been?

--Meghan, Wyatt's mom -12yo, fap, psc, uc-crohn's, a/i hives

[Guest guest]

The only med that releives my Crohns flares is Prednisone. One to two

month taper...sometimes longer depending on how persistant the flare

is. I may have to go on Remicade here in a while because nothing else

is working for me. Hate this disease.

Andi PSC/Crohns 01/02 Modesto California

>

> --I'm hoping to find out from others experiences that he's typical

for

> getting a flare under control and that relief is just around the

> corner (for " typical " ).

>

>

> Thought I'd add that his dr say his bone and joint pains (which have

> increased from occasional to daily) should go away when the flare is

> under control. Is that what others experience has been?

>

> --Meghan, Wyatt's mom -12yo, fap, psc, uc-crohn's, a/i hives

>

[Guest guest]

Hi Meghan;

I think that the typical time for getting a flare under control with

Crohn's disease depends on the medication(s), severity, and setting. In

hospitals with administration of IV corticosteroids or infliximab

(remicade), you are talking about discharge within 8 to 4 days in those

that respond to the medications. According to this article response to

infliximab may be somewhat more rapid than to hydrocortisone:

_________________

J. Clin. Gastroenterol. 2007 Aug;41(7):677-681.

A Prospective Open-label Trial of Remicade® in Patients With Severe

Exacerbation of Crohn's Disease Requiring Hospitalization: A Comparison

With Outcomes Previously Observed in Patients Receiving Intravenous

Hydrocortisone.

Bhatia JK, Korelitz BI, Panagopoulos G, Lobel E, Mirsky F, Sultan K,

Disanti W, Chun A, Keenan G, Mamun K

*Department of Gastroenterology, Lenox Hill Hospital, and New York

University School of Medicine, New York, NY †Centocor Inc, Malvern, PA.

PURPOSE: To evaluate treatment response to intravenous (IV) infliximab

(IFX) as a first-line therapy in patients hospitalized for severe

Crohn's disease and compare it with our earlier data using IV

hydrocortisone. METHODS: Seventeen cases received IFX (5 mg/kg) and

were matched for the same goal of therapy to those who had received

hydrocortisone (300 mg/d). The Crohn's and Colitis Foundation of

America-International Organization of Inflammatory Bowel Disease (CCFA-

IOIBD) score was obtained for the IFX-treated cases on admission and

daily and the Crohn's disease activity index (CDAI) score weekly

throughout the hospitalization and compared with those who received

hydrocortisone. Discharge was guided by the same criteria in both

groups. RESULTS: For the IFX group, the admission mean CCFA-IOIBD score

was 13.5 (+/-4.4). Eight of 17 patients achieved a clinical response

with a mean score of 4 (+/-1.5), representing a >/=50% reduction from

baseline to discharge. The mean admission score for the hydrocortisone

group was 17.75 (+/-7.1) with 13 of 16 achieving a mean score of 4.5

(+/-2.3). The mean discharge score for the 17 IFX patients was 6.9 (+/-

3) and for the hydrocortisone group was 5.9 (+/-3.2). Median length of

hospitalization for the IFX patients was 4 days (range 1 to 9) and 7.5

(5 to 15) days for the hydrocortisone group (P<0.001). CONCLUSIONS: IFX

therapy was an effective first-line agent in patients with severe

Crohn's disease who require hospitalization and therefore a primary

treatment option. Most patients receiving IFX can anticipate a briefer

hospitalization than with IV hydrocortisone. Failure of an early

response can provide an opportunity to consider an alternate form of

therapy sooner with IFX than with hydrocortisone. PMID: 17667052.

________________

But I honestly don't know if inflixmab has ever been used to treat

Crohn's disease in a patient with FAP, and I don't know whether Wyatt's

doctors would even be concerned about this?

I hope that Wyatt does not require hospitalization, and that whatever

Wyatt's doctors decide is best for therapy, this can be done at home.

Here's hoping that he will get relief within the week, and can soon get

back to school! Good luck!

Best regards,

Dave

(father of (22); PSC 07/03; UC 08/03)

[Guest guest]

Meghan,

I suspect the nausea is from PSC. The only thing that helps me is compazine.

If I don't take it I will suddenly start to regurgitate w/out warning. But I

am often nauseous or queezy.

-Marie

_________________________________________________________________

Tease your brain--play Clink! Win cool prizes!

http://club.live.com/clink.aspx?icid=clink_hotmailtextlink2

[Guest guest]

From the sounds of things we are working on the other end of the

bowel, but Noah has been dealing with his IBD flare all summer and

JUST recently became somewhat resolved. He had blood and loose stool

the whole bit... his joint pain did not flare per se, but he has

psoraitic arthritis so he has a good bit daily. I think summer is a

good time for him anyway. He is on Celebrex for that, and during the

flare I did pull it because of all the blood he was having rectally.

This was my own call... and I did tell the nurse at the GI's

office... she agreed it made sense and he has not complained... if he

had I would have put him back on.

His PTT did go up during this flare which to me indicates liver

involement. IDK?! I could be wrong...

Like you I wanted it resolved before school. I have a feeling he is

a bit anemic... as he is munching ice.

We go on the 15th and I will be asking for a ferritin level and

iron... as Noah has had some memory issues... and I know ferritin can

be related to memory.

We have had the bubbly stuff this go round... I think his flare DID

creep up pretty high as I was getting some coffee ground looking

stuff on some of his enema " things " (I know how descriptive) at night.

I hope Wyatt is well soon.

mom to Noah-10

www.caringbridge.org/visit/noahwmartens

[Guest guest]

> The only med that releives my Crohns flares is Prednisone. One to two

month taper...sometimes longer depending on how persistant the flare

is. I may have to go on Remicade here in a while because nothing else

is working for me. Hate this disease.

Andi PSC/Crohns 01/02 Modesto California

Hi, fellow Californiator. May I ask if you were started off on

Prednisone right off or did other meds not work first? --And, how long

the other meds were given a 'tryout' before switching to prednisone?

Is the prednisone no longer working anymore? I'm sorry it's so hard to

get relief. I may not have Crohn's, but still feel for you --hate

seeing my son unhappy w/ this, too.

I hope you get genuine relief soon.

--Meghan, mom to Wyatt -12yo, fap, psc, uc-crohn's, a/i hives

[Guest guest]

> I think that the typical time for getting a flare under control

with Crohn's disease depends on the medication(s), severity, and

setting. In hospitals with administration of IV corticosteroids or

infliximab (remicade), you are talking about discharge within 8 to 4

days in those that respond to the medications. According to this

article response to infliximab may be somewhat more rapid than to

hydrocortisone:

Hi,

I don't think Wyatt's having a severe flare (severe for him, but not

necessarily severe for Crohn's). This is new for him (and us), so

it's nasty in our lives but in someone else's might seem much

better. He was on the probiotic from the end of January until the

beginning of this month, began having upper symptoms/flare in May,

was scoped to find Crohn's " markers " in late June, started the full

lot of IBD meds he's now on at the beginning of July (2nd) and they

helped him some, just haven't helped further (and there seems to have

been a bit of backsliding in how much they're helping lately). For

us, it feels like a serious infringement on his daily living, but I

guess it's not considered a major Crohn's flare. Maybe that's why

it's taking a while --or seems like a while to us b/c we hate seeing

him like this? 'Bigger' meds have been brought up, but are trying to

be avoided if possible --hospitalization has definitely not been

mentioned by any of his drs.

> But I honestly don't know if inflixmab has ever been used to treat

Crohn's disease in a patient with FAP, and I don't know whether

Wyatt's doctors would even be concerned about this?

Depends on which dr --some are, some aren't (concerned about other

meds and how they might effect the FAP, particularly the

manifestations of FAP Wyatt presents with). Methotrexate, 6-MP, and

Prednisone have been brought up the most, Remicade only by the

Allergist/Immunologist. All the drs would like to try to

have 'lesser' meds do the trick --again, if possible.

> I hope that Wyatt does not require hospitalization, and that

whatever Wyatt's doctors decide is best for therapy, this can be done

at home. Here's hoping that he will get relief within the week, and

can soon get back to school! Good luck!

I don't think he'd need to go into the hospital, but definitely want

him to pull out of the flare asap. We have to wait to try that

hyoscyamine that might help the bloat out; Allergist/Immun (non-

prescribing dr) said it wasn't wise to start it before other new meds

changes had a 7-10 day chance to 'settle in' --in case of problems w/

those changes. I find it interesting how 1 dr will say " go " and

another says " wait " or even " stop " . Drives me crazy.

And, thank you, , I hope for total relief for him everyday. No

doubt you want the same for everyday all the way through med

school.

Thanks again,

Meghan, mom to Wyatt-12yo, fap,psc,uc-crohn's,a/i hives

[Guest guest]

> I suspect the nausea is from PSC. The only thing that helps me is

compazine. If I don't take it I will suddenly start to regurgitate

w/out warning. But I am often nauseous or queezy.

I didn't realize you could feel nauseous from PSC. I'll ask local dr

about that and compazine -thanks, Marie. I'm sorry you feel nauseous

and queasy so often, not at all a good feeling to take through the

day. Take care.

--Meghan, mom to Wyatt -12yo, fap, psc, uc-crohn's,a/i hives

[Guest guest]

> From the sounds of things we are working on the other end of the

bowel, but Noah has been dealing with his IBD flare all summer and

JUST recently became somewhat resolved. He had blood and loose stool

the whole bit... his joint pain did not flare per se, but he has

psoraitic arthritis so he has a good bit daily. I think summer is a

good time for him anyway.

Hi,

So if we put Noah's better working upper and Wyatt's better working

lower together right now, they'd be feeling good --wish we could.

I'm sorry Noah has been having an unpleasant, flaring summer, too. I

hope it turns out that it truly is getting resolved now -that would

be great for Noah.

>He is on Celebrex for that, and during the flare I did pull it

because of all the blood he was having rectally. This was my own

call... and I did tell the nurse at the GI's office... she agreed it

made sense and he has not complained... if he had I would have put

him back on.

Sounds like you made a good call.

> His PTT did go up during this flare which to me indicates liver

involement. IDK?! I could be wrong...

I hope it was just a fluke or temporary spike.

>Like you I wanted it resolved before school.

We've homeschooled Wyatt since 1st grade, but do so through a charter

school that has a special program for homeschooling families. He

takes classes on campus (and field trips, group activities and

events) and we do the rest at home. In past years he's also had

other classes or activities from other sources, but we're just doing

the charter and home this semseter. Since he's " middle school " now,

we're signing him up for the max # of classes they offer

homeschoolers. I can work around him feeling poorly at home, but

have no idea how that will work for his classroom teachers. I guess

we'll see.

What's it been like for Noah in school when he's flared or had other

issues before?

>I have a feeling he is a bit anemic... as he is munching ice. We go

on the 15th and I will be asking for a ferritin level and iron... as

Noah has had some memory issues... and I know ferritin can be related

to memory.

That's today! I hope it goes well (or went well, depending on when

you read this).

> We have had the bubbly stuff this go round... I think his flare DID

creep up pretty high as I was getting some coffee ground looking

stuff on some of his enema " things " (I know how descriptive) at night.

I can handle descriptive -no worries. Dh has no colon, I have

bladder/nerve damage, Wyatt has all his issues --we can get

descriptive when it comes to bathroom issues, lol.

I hope the coffe grind look is gone. I know that's not good, might

explain some of why you were worried he's anemic, too. Wyatt had

black spots, but they stopped (replaced by floating white dots --

weird, but definitely not blood).

> I hope Wyatt is well soon.

Thank you, and I wish the same for Noah.

[Guest guest]

>

> mom to Noah-10

> www.caringbridge.org/visit/noahwmartens

oops, I did it again, forgot to sign my name. On my aol boards, I just

sign-off and my siggy goes up. I tend to want to just hit 'send' when

I'm done typing, sorry.

--Meghan, forgetful mom to Wyatt-12yo, fap,psc,uc-crohn's,a/ihives

[Guest guest]

Hi Meghan,

I am so sorry to hear Wyatt has had an IBD flare this summer. I hope

the drs will find the correct medication for him soon, and that he

will get over it. Does your school begin after labour day? Ours (in

Finland) began this week on Tuesday.

My son Eemeli (10 yrs, PSC 2003) has been fine for quite a while now,

actually almost the whole time he has been on azathioprine but I

still finally took him to a specialist in Helsinki (our capital, with

the best experts in the country) because I wanted to get a second

opinion on his condition. And I got it. This gastroenterologist has

dealt with most adult PSC patients in Finland and he said Eemeli most

likely has not only PSC but AIH/PSC overlap, and that because of

those and his colon issues (which he had earlier but has not really

had while he has been on azathioprine) he should have a colonoscopy

asap. He should also have already had ERC to confirm the exact

diagnosis but his drs in the clinic we usually go to think it is not

time for it yet. Also this dr in Helsinki doubled Eemeli's earlier

urso dose. I have asked our regular drs for it for years but they

thought a lower dose was enough. I sent the recommendations of the

Helsinki specialist to our regular drs who we see as part of the

public health care. If we want the ERC, we need to persuade them to

send us for it to Helsinki University Hospital. Now we are waiting

for what happens, or if anything at all happens. They probably do not

like that I took Eemeli for a second opinion but they did know

already that I was not very happy with them in the first place. And

the dr in Helsinki told us exactly what I had expected to hear from

our original drs.

When Wyatt was diagnosed to have the PSC, did he have an ERC? If he

did, were there any complications?

At what age have other children in this support group had the ERC

and, in your experience, are complications more likely the

younger/smaller the child is? It would be great to have the exact

diagnosis based on the most accurate examination possible, and the

medication that helps the best and no extra drugs. But ERC sounds

scary. Any advice?

Taru-Mari

mom to Eemeli 10 yrs, PSC 2003, now treated with 1200 mg of urso, 100

mg of azathioprine, calcium and vitamin D supplement for a PSC

diagnosed with several MRI scans and lab work