leg pain with ibd unrelated bone issues

December 13, 2008

Hello everyone, I haven't posted in a long while (I read and posts in

fits and bursts). I was wondering if anyone else here has a lot of

trouble with pain in their legs and feet, but in addition to having

psc & ibd also has some kind of structural deformity or separate

medical issue with their feet &/or legs --so the pain isn't strictly

psc/ibd. My 14yoson has psc & ibd and he also is severly flat footed

with severe pronation and pes planus valgus. Some of the bones in

his feet have deformed over time and he doesn't walk 'normal', is

misaligned from feet to hips. For the better part of a year we were

told his chronic pain was due to his ibd or psc and he saw a

rheumatologist for this. We didn't know his feet were malformed

(they didnt' appear that way when he was younger and he was active).

Anyway, we saw the physical problem with his feet only a year ago

when he was standing barefoot before us and he began treatment and

care for it then, but did not progress this year as we were told he

would and remained very inactive (and is now disabled). The

orthopedic surgeons we've consulted with feel his pain IS due to the

immune disorders and not the structural deformities, that

inflammation in the body is aggravating the already atypical bones,

muscles, and tendons involved. We've 180'd back to trying to work

out the pain in his legs from his ibd/psc now and I was looking for

anyone who might have also dealt with this combo of structural

problems AND psc/ibd inflammation within the body. Also, our son has

autoimmune hives and we've wondered on our own if this might also be

part of the pain-inflammation issue for our son since it has never

been fully controlled (so always present in some level in his body).

He was in remission for a while w/ his ibd and then 'mostly' in

remission with it after that, but his foot & leg pains never abated --

just seems odd to me that ibd would be the cause even when it

is 'gone'. He isn't in a great deal of pain all the time, but is in

some level of pain all the time, usually low. I highly doubt I'll

find some with the same combo of issues, but maybe with similar

ones?? I'd love to know how you manage day-to-day and how the pain

is managed medically, as well. Also, what type of doctor(s) manages

this with you and what meds do you (safely) take to help? We are

trying to make decisions about whether our son should have surgeries

to 'help' the deformities and somewhat realign his feet (and when -

and which surgeries). If we were able to separate the conditions as

they are related to pain, foot deformities from immune disorders (and

also which specific immune disorders) that would help us a great

deal. If we could eliminate the immune-caused pain that would be

even better.

Thank you, and I hope everyone is able to have a good holiday season

(whichever holiday you celebrate).

Meghan, mom to 14yo Wyatt -psc, ibd, fap (inherited condition), gerd,

autoimmune hives

December 17, 2008

Thank you, ! I've saved the links and will look over them with

Russ later tonight. Wyatt's upper traact was scoped yesterday and

everything looked good in there still (he's had no lower symptoms so

we assume the lower tract is still good as well). He's not flaring,

so I'm very interested to read up on inflammation connected to IBD

when it's all calm inside -and what can help if that is the

cause/reason for the extent of pain Wyatt has in his feet/legs. And

no, neither of the surgeons who brought up the immune disorders (as

the root of the pain) have discussed the biologics with us as an

option for the leg pains. One referred us to a pain management

clinic and perhaps he was expecting them to discuss it w/ us. I'm

going to do a bit of research on this in the meantime and now have

more to work with thanks to you.

I hope has been doing well in school and that your whole

family has been as healthy as possible, especially your son. I

haven't kept up on the board, so I don't know how things have been

for him (or anyone other the pscmoms on the other board). I hope all

has been good for him.

Aside from Wyatt's physical disability and the chronic pain with it,

his health has been pretty good this year, at least compared to last

year. It's never ideal, of course, but heaps better than before.

He's getting a Wish from MAW for 2009, we just found out on Monday.

He's very excited and said it was about time something really good

happened due to all the diseases and craziness. It warms my heart

that he's so happy --what a Christmas gift!

Russ still has that " thing " in his bum, been tracked for a year now --

turns out there is an FAP adenoma inside of an 'outer shell' that's

an inflammatory growth, non FAP (it's no longer 'unknown etiology').

It was shrinking for a while, then stopped, but was just enough

smaller that the last biopsy got deeper into it and found the adenoma

inside, which was a surprise (not at all like getting to the yummy

gum center inside a tootsie pop) but no cancerous changes in the

sample so yay for that. Russ' surgeon is more confident with its size

now that it can be removed without damaging Russ' j-pouch --so there

shouldn't be a risk Russ of losing the pouch to get the dern thing

out as the surgeon previously thought. Russ has had something like

10 lower scopes to track that bugger this year. We'll be so glad

when the dratted thing is gone -without any mishaps, j-pouch still

intact.

I'm still healing up from both of my spinal surgeries this spring and

now know what's permanently tweaked for me and what's going to

continue to improve as I continue to get better. I'd hoped to have

more improve, less that's permanent (and say good-bye to pain meds),

but am thrilled with what is better now than before. I am able to be

the family health manager again and that's what matters to me most.

Enjoy the holiday season and blessing to you and your loved ones,

Meghan, mom to 14yo Wyatt -psc, ibd, fap, gerd, autoimmune hives

> Hi Meghan;

>

> Can I recommend reading this article on biological therapy for

> extraintestinal manifestations of IBD:

>

> Inflamm Bowel Dis. 2007 Nov;13(11):1424-9.

>

> Biologic therapy in the management of extraintestinal

manifestations

> of inflammatory bowel disease.

>

> Barrie A, Regueiro M

>

> Division of Gastroenterology, Hepatology and Nutrition, University

of

> Pittsburgh School of Medicine, University of Pittsburgh Medical

> Center, Pittsburgh, Pennsylvania, USA.

>

> The inflammatory bowel diseases (IBD), notably Crohn's disease (CD)

> and ulcerative colitis (UC), are systemic inflammatory diseases

> primarily involving the gastrointestinal tract. Twenty percent to

40%

> of patients with IBD develop extraintestinal inflammation and

> symptoms, known as extraintestinal manifestations (EIMs).1-7 The

most

> common EIMs affect the joints, skin, eyes, and biliary tract. The

> EIMs associated with IBD bear a negative impact on patients with UC

> and CD. Thus, the successful treatment of EIMs is essential for

> improving the quality of life of IBD patients. For most EIMs, their

> resolution often parallels that of the active IBD in both timing

and

> therapy required. However, some EIM such as axial arthritis,

pyoderma

> gangrenosum, uveitis, and primary sclerosing cholangitis run a

> clinical course independent of IBD disease activity. The advent of

> biologic response modifiers, e.g., tumor necrosis factor-alpha

(TNF)

> inhibitors, has improved the treatment of IBD and its associated

> EIMs. This article reviews the therapeutic experiences of the 2

most

> widely used anti-TNF neutralizing antibodies, infliximab and

> adalimumab, for immune-mediated EIM of IBD. PMID: 17567879.

>

> Full text avilable at:

>

> http://www3.interscience.wiley.com/cgi-

bin/fulltext/114278996/PDFSTART

>

> It talks about joint, skin, eye and biliary manifestations, and

> identifies those that may run a course separate from IBD, and those

> which may or may not respond to tumor necrosis factor inhibitors,

> which tend to block inflammation. I was wondering whether your

son's

> orthopedic surgeons had taked with you about this possible therapy,

> given that they " feel his pain IS due to the immune disorders and

not

> the structural deformities, that inflammation in the body is

> aggravating the already atypical bones, muscles, and tendons

> involved. "

>

> Best regards,

>

> Dave

> (father of (23); PSC 07/03; UC 08/03)

>

December 17, 2008