RE: update...(long overdue, I know) and ?s = Chron's/Colitis

[Guest guest]

>

> First, I want to apologize for my total absence the last several

> months. I needed to take a break from the internet and focus on

my

> family for various reasons.

>

> As some of you may remember, my daughter, , was diagnosed

with

> poly JRA at age 18 months. That was almost 1-1/2 years ago now,

and

> after some initial fumbling around with different meds, she went

on

> injectable methotrexate for about 5 months and her joint symptoms

had

> all but vanished. This might be TMI for some....but her stools

have

> never been 'right'...every doc we saw, I would mention her loose

> stools and it was always brushed under the table. I figured that

it

> was at least somewhat attributable to all of the meds she was on,

and

> tried to put my concerns aside. Then I started seeing bloody

mucous

> in her diaper. Again, mentions were made to docs, and finally on

our

> last visit to the rheumy he suggested (actually an intern

suggested)

> that we take to a pedi gastro doc.

>

> We did, and now after LOTS of testing and bloodwork came back

> negative (sed rate was even normal), she underwent a colonoscopy

> under general anesthesia last week. I just spoke with her gastro,

> who said the results of the biopsies show colitis/proctitis, and

she

> is prescribing Azulfidine, but we have a follow up appt with her

next

> week. The gastro says that further bloodwork will be needed to

> determine if it's Chron's or not. Now I am wondering if her

> arthritis was related to her bowel issues all along....actually, I

am

> just plain confused. Does she really have JRA, or was the

arthritis

> a symptom of some other autoimmune related illness? Honestly it

> makes my head spin, and again here I sit totally P**SED off at all

of

> her doctors for not listening when I asked about the bowel

issues.

> Part of me is glad that we're perhaps on the right path now, but

part

> of me wonders if we are...??? Is there something else lurking in

the

> background or some other symptom I'm not putting together with all

of

> this?

>

> Enough of my venting. The real reason I am posting here is

because

> this group has been so helpful and supportive in the past, giving

me

> way more info than any of the medical community has. Do any of

you

> have experience with Chron's or Colitis? Is there something else

I

> should be investigating here, to assure my daughter gets the right

> medical treatment (I am kicking myself now thinking of the NSAIDS

she

> took that probably worsened her colitis)?

>

> Thanks so much, and sorry for the long vent!

>

> Kathy

> mom to , 2-1/2 poly

> and Luke, 5-1/2

>

The one thing I forgot to add to this, is that has been off

Methotrexate since January of this year, and off all meds since

March (naprosyn & zantac). We decided to take her off the meds

(without the doc's knowledge) because she was doing fine, and we

were worried about her bowel issues. The bowel troubles continued,

even worsened, without the medications. She has had no flares since

July of last year, before she started the MTX.

[Guest guest]

Hi Kathy,

Its understandable why you would be so frustrated with the lack of

follow up regarding your continued concerns over 's stools.

My sister has Chrones disease. Her diagnosis took awhile...even with

blood in her stools there was a point when the doctors didn't know

what was wrong and would of course suggest a psyc consult or

something stupid like that.

She was diagnosed around the age of 16 and due to the severity of her

condition she had to have a iliostomy. Along with the issues of her

stools her symptoms included, joint and muscle pain, fatigue,

increased infections etc.

I believe arthritis is often commonly associated with chrones disease.

I think it would be good for you to just keep following up on this

with the gastro doc. It isn't uncommon to have a primary diagnosis

of chrones with a secondary of arthritis. Similar to those with

arthritis that may have a secondary diagnosis of asthma. Apparently,

there are some autoimmune diseases that are more likely to have a

secondary diagnosis as well.

I hope that things will improve for . I know my sister often

took similar medications as my daughter. She used methotrexate,

Remicade and prednisone.

So, perhaps as far as treament goes it wouldn't be to far off from

what they may do with the new info on colitis...

Keep us posted as you learn more.

(Aundrea 12 systemic jra/gerd) --

- In , " kathybender " <sk8ingmomof2@...> wrote:

>

> First, I want to apologize for my total absence the last several

> months. I needed to take a break from the internet and focus on my

> family for various reasons.

>

> As some of you may remember, my daughter, , was diagnosed

with

> poly JRA at age 18 months. That was almost 1-1/2 years ago now,

and

> after some initial fumbling around with different meds, she went on

> injectable methotrexate for about 5 months and her joint symptoms

had

> all but vanished. This might be TMI for some....but her stools

have

> never been 'right'...every doc we saw, I would mention her loose

> stools and it was always brushed under the table. I figured that

it

> was at least somewhat attributable to all of the meds she was on,

and

> tried to put my concerns aside. Then I started seeing bloody

mucous

> in her diaper. Again, mentions were made to docs, and finally on

our

> last visit to the rheumy he suggested (actually an intern suggested)

> that we take to a pedi gastro doc.

>

> We did, and now after LOTS of testing and bloodwork came back

> negative (sed rate was even normal), she underwent a colonoscopy

> under general anesthesia last week. I just spoke with her gastro,

> who said the results of the biopsies show colitis/proctitis, and

she

> is prescribing Azulfidine, but we have a follow up appt with her

next

> week. The gastro says that further bloodwork will be needed to

> determine if it's Chron's or not. Now I am wondering if her

> arthritis was related to her bowel issues all along....actually, I

am

> just plain confused. Does she really have JRA, or was the

arthritis

> a symptom of some other autoimmune related illness? Honestly it

> makes my head spin, and again here I sit totally P**SED off at all

of

> her doctors for not listening when I asked about the bowel issues.

> Part of me is glad that we're perhaps on the right path now, but

part

> of me wonders if we are...??? Is there something else lurking in

the

> background or some other symptom I'm not putting together with all

of

> this?

>

> Enough of my venting. The real reason I am posting here is because

> this group has been so helpful and supportive in the past, giving

me

> way more info than any of the medical community has. Do any of you

> have experience with Chron's or Colitis? Is there something else I

> should be investigating here, to assure my daughter gets the right

> medical treatment (I am kicking myself now thinking of the NSAIDS

she

> took that probably worsened her colitis)?

>

> Thanks so much, and sorry for the long vent!

>

> Kathy

> mom to , 2-1/2 poly

> and Luke, 5-1/2

>

[Guest guest]

hi Kathy,We too have had a frustrating (to put it mildly) journey with the doctors. My daughter recently underwent some testing as a result of some labs (on a panel ordered by the rheumy) that were positive for IBD/Crohn's. She is asymptomatic, but we agreed to see the gastro. The gastro was great. He felt that without symptoms, the labs alone were not alarming to him, and agreed that some testing less invasive than endoscopy would suffice. I don't know much, but he told us that there are medications that may be used to treat both jra and crohn's, the exception of course being any form of NSAID; there is an arthritis that accompanies Crohn's and it usually involves the large joints such as hips or knees. What caused them to give the diagnosis of poly jra to originally? Labs? Physical exam? Both? It infuriates me that the doctors ignored what you told them about her stools - to me,

some of the best drs are those who carefully consider the parent's input, as who else observes the child more? You should not have to be following behind the doctors, wracking your brain to be sure every base is covered. I wish I knew more to help you. Try not to be hard on yourself about the nsaids - IIt seems that was the drs responsibility. Meanwhile, when you go to the appt next week, ask lots of questions, express the concerns you have expressed here - that you are concerned whether something is being overlooked and what does all of this mean regarding 's jra diagnosis, etc. Know that we are all here to listen and support you as best we can; I am sorry for the frustration with the drs and worrying you have the right answers for . I hope you will keep us updated - let us know how it goes at her appt next week. Take care,nancy (amanda, 17, poly)kathybender

<sk8ingmomof2@...> wrote: First, I want to apologize for my total absence the last several months. I needed to take a break from the internet and focus on my family for various reasons. As some of you may remember, my daughter, , was diagnosed with poly JRA at age 18 months. That was almost 1-1/2 years ago now, and after some initial fumbling around with different meds, she went on injectable methotrexate for about 5 months and her joint symptoms had all but vanished. This might be TMI for

some....but her stools have never been 'right'...every doc we saw, I would mention her loose stools and it was always brushed under the table. I figured that it was at least somewhat attributable to all of the meds she was on, and tried to put my concerns aside. Then I started seeing bloody mucous in her diaper. Again, mentions were made to docs, and finally on our last visit to the rheumy he suggested (actually an intern suggested) that we take to a pedi gastro doc. We did, and now after LOTS of testing and bloodwork came back negative (sed rate was even normal), she underwent a colonoscopy under general anesthesia last week. I just spoke with her gastro, who said the results of the biopsies show colitis/proctitis, and she is prescribing Azulfidine, but we have a follow up appt with her next week. The gastro says that further bloodwork will be needed to determine if it's Chron's or not.

Now I am wondering if her arthritis was related to her bowel issues all along....actually, I am just plain confused. Does she really have JRA, or was the arthritis a symptom of some other autoimmune related illness? Honestly it makes my head spin, and again here I sit totally P**SED off at all of her doctors for not listening when I asked about the bowel issues. Part of me is glad that we're perhaps on the right path now, but part of me wonders if we are...??? Is there something else lurking in the background or some other symptom I'm not putting together with all of this? Enough of my venting. The real reason I am posting here is because this group has been so helpful and supportive in the past, giving me way more info than any of the medical community has. Do any of you have experience with Chron's or Colitis? Is there something else I should be investigating here, to assure my daughter

gets the right medical treatment (I am kicking myself now thinking of the NSAIDS she took that probably worsened her colitis)? Thanks so much, and sorry for the long vent! Kathy mom to , 2-1/2 poly and Luke, 5-1/2

Got a little couch potato?

Check out fun summer activities for kids.

[Guest guest]

No need to be sorry Kathy this is why the list exist. I have for many years had the same gastro problems along with my JRA. I still do at 41. This is why when I was dx'd with the colon cancer I was confused in the symptoms. Believe me I do not want a colonoscopy every time I turn around but now I am more confused than ever and dont know what to do most days. I thought all my symptoms were JRA/ colitis (or whatever) related and doc still says they are. Many individuals with JRA /RA have gastro problems so now I always wonder is it that or the cancer that caused my symptoms. Now that I am cancer free (ooo) I still, in the back of my mind, worry. I will keep lil rachel im my thoughts and pray for a positive outcome and relief...keep us posted!

Donna************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Thanks .

's original diagnosis of poly JRA was after she presented with a limp that got worse, many x-rays, many blood tests and our description of her symptoms -- worse in the a.m. right after waking up, etc. Her first xrays and bloodwork didn't show anything more than possibly a cold/virus coming on, but as they were repeated, her c-reactive protein and sed rate were elevated significantly. Xrays also showed inflammation at the joints. Her joints were hot to the touch and noticeably swollen. She was at a point where she couldn't walk, she would crawl (or even roll) to get from place to place. The arthritis was in many joints, large such as knees and even the small ones like her fingers and toes. I am hoping that points away from a crohn's diagnosis. I wish I didn't have to follow up on the doctors, and so far

this gastro has been very responsive and doesn't seem to ignore our input, so that's a big plus.

Thanks again, and I will definitely keep the group updated on 's diagnosis and treatment. We had a nice quiet year, but it looks like we're back at it again....I keep praying that the arthritis remains in hiding and doesn't rear its ugly head again.

Kathy

mom to , 2-1/2, poly

and Luke, 5-1/2 (and an official kindergartener as of this week!)

Re: update...(long overdue, I know) and ?s = Chron's/Colitis

hi Kathy,We too have had a frustrating (to put it mildly) journey with the doctors. My daughter recently underwent some testing as a result of some labs (on a panel ordered by the rheumy) that were positive for IBD/Crohn's. She is asymptomatic, but we agreed to see the gastro. The gastro was great. He felt that without symptoms, the labs alone were not alarming to him, and agreed that some testing less invasive than endoscopy would suffice. I don't know much, but he told us that there are medications that may be used to treat both jra and crohn's, the exception of course being any form of NSAID; there is an arthritis that accompanies Crohn's and it usually involves the large joints such as hips or knees. What caused them to give the diagnosis of poly jra to originally? Labs? Physical exam? Both? It infuriates me that the doctors ignored what you told them about

her stools - to me, some of the best drs are those who carefully consider the parent's input, as who else observes the child more? You should not have to be following behind the doctors, wracking your brain to be sure every base is covered. I wish I knew more to help you. Try not to be hard on yourself about the nsaids - IIt seems that was the drs responsibility. Meanwhile, when you go to the appt next week, ask lots of questions, express the concerns you have expressed here - that you are concerned whether something is being overlooked and what does all of this mean regarding 's jra diagnosis, etc. Know that we are all here to listen and support you as best we can; I am sorry for the frustration with the drs and worrying you have the right answers for . I hope you will keep us updated - let us know how it goes at her appt next week. Take care,nancy (amanda, 17,

poly)kathybender <sk8ingmomof2> wrote:

First, I want to apologize for my total absence the last several months. I needed to take a break from the internet and focus on my family for various reasons. As some of you may remember, my daughter, , was diagnosed with poly JRA at age 18 months. That was almost 1-1/2 years ago now, and after some initial fumbling around with different meds, she went on injectable methotrexate for about 5 months and her joint symptoms had all but vanished. This might be TMI for some....but her stools have never been 'right'...every doc we saw, I would mention her loose stools and it was always brushed under the table. I figured that it was at least somewhat attributable to all of the meds she was on, and tried to put my concerns aside. Then I started seeing bloody mucous in her diaper. Again, mentions were made to docs, and finally on our last visit to the rheumy he suggested (actually an intern

suggested)that we take to a pedi gastro doc. We did, and now after LOTS of testing and bloodwork came back negative (sed rate was even normal), she underwent a colonoscopy under general anesthesia last week. I just spoke with her gastro, who said the results of the biopsies show colitis/proctitis, and she is prescribing Azulfidine, but we have a follow up appt with her next week. The gastro says that further bloodwork will be needed to determine if it's Chron's or not. Now I am wondering if her arthritis was related to her bowel issues all along....actually, I am just plain confused. Does she really have JRA, or was the arthritis a symptom of some other autoimmune related illness? Honestly it makes my head spin, and again here I sit totally P**SED off at all of her doctors for not listening when I asked about the bowel issues. Part of me is glad that we're perhaps on the right path now,

but part of me wonders if we are...??? Is there something else lurking in the background or some other symptom I'm not putting together with all of this? Enough of my venting. The real reason I am posting here is because this group has been so helpful and supportive in the past, giving me way more info than any of the medical community has. Do any of you have experience with Chron's or Colitis? Is there something else I should be investigating here, to assure my daughter gets the right medical treatment (I am kicking myself now thinking of the NSAIDS she took that probably worsened her colitis)? Thanks so much, and sorry for the long vent!Kathymom to , 2-1/2 polyand Luke, 5-1/2

Got a little couch potato? Check out fun summer activities for kids.

[Guest guest]

Thanks, .

I have been reading up on colitis and crohn's disease, and the more I read, the more it sounds like any number of possibilities exist for . It could be 2 separate diseases, jra and IBD, or it could be the arthritis is a result of the IBD. Inflammation seems to be the common link. With jra, it's the joints, eyes and/or sometimes other organs, and with IBD it is the gastrointestinal organs. I've also been finding that people with autoimmune diagnoses often have more than one. How ridiculous of a doctor to diagnose blood in the stool as a psychological issue.....but unfortunately it doesn't totally surprise me. I've also read about some people who are able to control the IBD with just an anti-inflammatory such as the one just rx'd for ....so I am hopeful in that respect. Thanks for all of the info on your

sister. There is another interesting link that I have been coming across regarding autoimmune disease, as more and more often, I hear about multiple autoimmune diseases within a family, maybe not the same disease, but it seems to happen quite frequently. It's just my mind working in overdrive, but for some reason, I am thinking there is a relationship to migraines as well...just a feeling I have, though...nothing scientific behind it.

Take care, and I will keep everyone updated on 's status. I'm back on 'individual message' status with the group right now.

Kathy

mom of , 2-1/2, poly

and Luke, 5-1/2

Re: update...(long overdue, I know) and ?s = Chron's/Colitis

Hi Kathy,Its understandable why you would be so frustrated with the lack of follow up regarding your continued concerns over 's stools.My sister has Chrones disease. Her diagnosis took awhile...even with blood in her stools there was a point when the doctors didn't know what was wrong and would of course suggest a psyc consult or something stupid like that.She was diagnosed around the age of 16 and due to the severity of her condition she had to have a iliostomy. Along with the issues of her stools her symptoms included, joint and muscle pain, fatigue, increased infections etc.I believe arthritis is often commonly associated with chrones disease.I think it would be good for you to just keep following up on this with the gastro doc. It isn't uncommon to have a primary diagnosis of chrones with a secondary of arthritis. Similar to those with arthritis that may have a

secondary diagnosis of asthma. Apparently, there are some autoimmune diseases that are more likely to have a secondary diagnosis as well.I hope that things will improve for . I know my sister often took similar medications as my daughter. She used methotrexate, Remicade and prednisone.So, perhaps as far as treament goes it wouldn't be to far off from what they may do with the new info on colitis...Keep us posted as you learn more. (Aundrea 12 systemic jra/gerd) >> First, I want to apologize for my total absence the last several > months. I needed to take a break from the internet and focus on my > family for various reasons. > > As some of you may remember, my daughter, , was

diagnosed with > poly JRA at age 18 months. That was almost 1-1/2 years ago now, and > after some initial fumbling around with different meds, she went on > injectable methotrexate for about 5 months and her joint symptoms had > all but vanished. This might be TMI for some....but her stools have > never been 'right'...every doc we saw, I would mention her loose > stools and it was always brushed under the table. I figured that it > was at least somewhat attributable to all of the meds she was on, and > tried to put my concerns aside. Then I started seeing bloody mucous > in her diaper. Again, mentions were made to docs, and finally on our > last visit to the rheumy he suggested (actually an intern suggested)> that we take to a pedi gastro doc. > > We did, and now after LOTS of testing and bloodwork came back > negative

(sed rate was even normal), she underwent a colonoscopy > under general anesthesia last week. I just spoke with her gastro, > who said the results of the biopsies show colitis/proctitis, and she > is prescribing Azulfidine, but we have a follow up appt with her next > week. The gastro says that further bloodwork will be needed to > determine if it's Chron's or not. Now I am wondering if her > arthritis was related to her bowel issues all along....actually, I am > just plain confused. Does she really have JRA, or was the arthritis > a symptom of some other autoimmune related illness? Honestly it > makes my head spin, and again here I sit totally P**SED off at all of > her doctors for not listening when I asked about the bowel issues. > Part of me is glad that we're perhaps on the right path now, but part > of me wonders if we are...??? Is there

something else lurking in the > background or some other symptom I'm not putting together with all of > this? > > Enough of my venting. The real reason I am posting here is because > this group has been so helpful and supportive in the past, giving me > way more info than any of the medical community has. Do any of you > have experience with Chron's or Colitis? Is there something else I > should be investigating here, to assure my daughter gets the right > medical treatment (I am kicking myself now thinking of the NSAIDS she > took that probably worsened her colitis)? > > Thanks so much, and sorry for the long vent!> > Kathy> mom to , 2-1/2 poly> and Luke, 5-1/2>

[Guest guest]

Hi Kathy. I know that Crohn’s is

associated with spondylitis. They have tested for that as he has not

gained weight, and has lost it while growing taller, over the years since

diagnosis. Chris’ rheumy had a girl with similar symptoms to my son and

she ended up having Crohns as well as JRA. It is not unheard of to be diagnosed

with both. I am sorry it took so long to get some kind of response from a dr.

My son made the decision to go off of his

meds, and while he is doing ok, with minimal flaring, I do worry about joint

degeneration that could be going on, that will not be arrested or slowed if he

was on meds. I am not sure that is happening, I worry that it is. Even though

they seem outwardly fine, there may be things going on inside.

I wouldn’t kick yourself too hard –

you did what you felt was the right thing. You were trying to make your

daughter better the best way any of us know how. There is a saying from Maya

Angelou that I like – “You did what you knew how to do, and when

you knew better, you did better.” This whole thing is a learning process

and even the drs don’t have all the answers as we have all learned. Good

luck and let us know how things are going, Michele ( 20, spondy)

From: [mailto: ] On Behalf Of kathybender

Sent: Wednesday, August 22, 2007

3:58 PM

Subject:

update...(long overdue, I know) and ?s = Chron's/Colitis

First, I want to apologize for my total absence the

last several

months. I needed to take a break from the internet and focus on my

family for various reasons.

As some of you may remember, my daughter, , was diagnosed with

poly JRA at age 18 months. That was almost 1-1/2 years ago now, and

after some initial fumbling around with different meds, she went on

injectable methotrexate for about 5 months and her joint symptoms had

all but vanished. This might be TMI for some....but her stools have

never been 'right'...every doc we saw, I would mention her loose

stools and it was always brushed under the table. I figured that it

was at least somewhat attributable to all of the meds she was on, and

tried to put my concerns aside. Then I started seeing bloody mucous

in her diaper. Again, mentions were made to docs, and finally on our

last visit to the rheumy he suggested (actually an intern suggested)

that we take to a pedi gastro doc.

We did, and now after LOTS of testing and bloodwork came back

negative (sed rate was even normal), she underwent a colonoscopy

under general anesthesia last week. I just spoke with her gastro,

who said the results of the biopsies show colitis/proctitis, and she

is prescribing Azulfidine, but we have a follow up appt with her next

week. The gastro says that further bloodwork will be needed to

determine if it's Chron's or not. Now I am wondering if her

arthritis was related to her bowel issues all along....actually, I am

just plain confused. Does she really have JRA, or was the arthritis

a symptom of some other autoimmune related illness? Honestly it

makes my head spin, and again here I sit totally P**SED off at all of

her doctors for not listening when I asked about the bowel issues.

Part of me is glad that we're perhaps on the right path now, but part

of me wonders if we are...??? Is there something else lurking in the

background or some other symptom I'm not putting together with all of

this?

Enough of my venting. The real reason I am posting here is because

this group has been so helpful and supportive in the past, giving me

way more info than any of the medical community has. Do any of you

have experience with Chron's or Colitis? Is there something else I

should be investigating here, to assure my daughter gets the right

medical treatment (I am kicking myself now thinking of the NSAIDS she

took that probably worsened her colitis)?

Thanks so much, and sorry for the long vent!

Kathy

mom to , 2-1/2 poly

and Luke, 5-1/2

[Guest guest]

Thanks, Donna. Even though I've been somewhat absent from the board, I have been able to check in from time to time, and to read some of the posts. I prayed along with everyone else here for a positive outcome for you, and I can't tell you how wonderful it is to hear that you are cancer free! I can certainly see where it is doubly important for those with colon-related health issues to have regular screenings, because many of the symptoms are identical. My aunt (by marriage) died of colon cancer at the age of 49, and I just found out yesterday that she had colitis, but didn't keep up on her colonoscopies like she should have, and ignored certain symptoms just thinking it was her

chronic condition. By the time it was bad enough for her to know it wasn't the colitis, it was too late. Nobody likes having the colonoscopies, but it sure beats the alternative, heh? Thank you for the prayers and kind words of support. I will definitely keep you posted.

Kathy

mom to , 2-1/2, poly

and Luke, 5-1/2

Re: update...(long overdue, I know) and ?s = Chron's/Colitis

No need to be sorry Kathy this is why the list exist. I have for many years had the same gastro problems along with my JRA. I still do at 41. This is why when I was dx'd with the colon cancer I was confused in the symptoms. Believe me I do not want a colonoscopy every time I turn around but now I am more confused than ever and dont know what to do most days. I thought all my symptoms were JRA/ colitis (or whatever) related and doc still says they are. Many individuals with JRA /RA have gastro problems so now I always wonder is it that or the cancer that caused my symptoms. Now that I am cancer free (ooo) I still, in the back of my mind, worry. I will keep lil rachel im my thoughts and pray for a positive outcome and relief...keep us posted! Donna************ ********* ********* ********Get a sneak peek of the all-new AOL at http://discover. aol.com/memed/ aolcom30tour