C is having symptoms

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Ok so I created an album but can't upload the pics, I'm assuming because of their size but I'm not sure how to resize them. I have picassa editing software but can't figure out how to resize.
 
I have picassa at home. If you haven't figured it out by this evening. I'll pm you with instructions as I can't remember what tab it is under
 
I'd love to see the pics but have no idea how to help re the resizing :(

Think you need to change your thread title... eventhough I know he's home, every time I see the title I think 'oh no!' :lol:
 
Thanks, Jmrogers4!!

Tesscorm, yeah I probably do need to change it! I'm hoping the HACA results are back today, I have a call into the GI nurse so I hope she calls me back!!
 
I have to get with Jmrogers to figure out the whole resizing thing before I can put pics up.

So, the HACA test came back and no antibodies. On the one hand, I am thrilled because according to the tests done in the hospital the Remi or MTX or both must be doing their job but on the other hand I still don't know what caused all the issues.

I haven't spoken with C's GI yet about all of the test results that we have and the whole picture and what his thinking is, we will meet with him right before the next Remi treatment.

I'm a little frustrated, that one knee still bothers C. It is not as bad as it was but he has good days and bad. Since starting treatment last year, C's norm was 1 bm a day or every other day. Since leaving the hospital he is having 2-4 bms a day, not sure why or what has changed.

Well, that is all I have for now. C is eating good and hopefully gaining weight, if not we will be addressing that as well.
 
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What beyond ANA and those type of bloods would Rhuemy do?
Hosp rhuemy said all those tests were fine
No swelling or redness at location
What tests would I ask Rhuemy for since the first line of tests were fine?

I'm going to keep pushing
The pain hasn't been up to a 6 or 7 since hospital
Last night he asked for tylenol and heating pads
Said knee pain was a 3 or 4 but that all his muscles ached too(so not a good indicator night)

We are coming up on week 3 after infusion
That is when things went haywire last time
So I'm tracking everything in case it happens again.
 
Very likely this is a stretch but... Is it possible that the knee pain is not directly related to crohns? Is there any way that it could be a past injury that flares up sometimes? I know that cipro (and perhaps flagyl) can cause problems with tendons - could some damage have happened?? And is this something the hospital rheumi would have looked for?
 
DS Rheumo follows the Gi blood work
Does a lot of range of motion stuff during his exam
Checks skin blood issues - basically he handles all the EIM's except for eye stuff and gives Gi recommendations about whether inflammation from an EIM is the start of a Rheumo disorder since Ibd kids tend to get those .


Our Rheumo follows alot of Ibd kids even without JA
 
Sorry, crazy night last night, sending you a PM right now with instructions, can't wait to see pictures :)
 
Was just wondering if it might be the tendons/ligaments where they join the bone that might be acting up. That might not show up in tests for rheumatoid, etc. Not sure what test they would need to do though. I get pain in my joints - mainly fingers and toes, sometimes knees/elbows, but although it feels like pain "at the joint" I believe it is the tendons/ligaments that are causing pain.
 
I second rheumatology! If your GI isn't quick to refer him (ours wasn't) get your pediatrician to do it. Our experience was that GI was oddly nonchalant about my son's leg pain but when we finally got in to see rheumatology they took it very seriously. Our rheumatologist did loads of range of motion tests and some blood work. My son had enthesitis so the inflammation wasn't actually in the joint but rheumatology follows that too.
 
Ok, regardles of what GI has to say about joint pain, I'm asking for a Rheumy, he has seen one but there wasn't much to it. He just ran some blood panels and said his was arthralgia(sp?) and related to his CD and deemed non-inflammatory whereas arthritis would be inflammatory. He suggested some range of motion exercises, otc meds for pain(GI px'ed tramadol after Rheumy appt but we haven't used it).

I don't think he has ever had a knee injury
Usually it is his lower back and both knees
This time around(before hosp. til now) he feels some pain in lower back and other knee but not bothersome, just right knee that gets to 3 or 4.(higher before hosp. 6 or 7)

C is eating better, still not full on teenage boy diet but he has gained 2lbs!! Not sure if it'll stay but excited all the same! There still isn't something quite right, though. At his present weight I would think GI is still thinking periactin(or another drug that starts with m) and/or ng tube night feedings.

I got the pics in the album too btw!
 
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Thanks everyone for all the responses. I really want to get on top of this joint pain, he just isn't as active as he usually is and when he is he pays for it the next day.
 
Hugs Clash
DS just saw his Rheumo today.
He gave DS a letter for school .
Checked some puffy fingers and other stuff.

Hope he feels better soon.
 
We found the Rheumy we saw to be useless. He even told us that crohns does not cause joint pain! This guy is supposed to be the top peds Rheumy in the area and the only one on our insurance. We waited four hours to see him both times. I gave up and decided we would continue to treat her joint pain with Tylenol and hot compresses/ warm baths for now.
 
kimmidwife said:
We found the Rheumy we saw to be useless. He even told us that crohns does not cause joint pain! This guy is supposed to be the top peds Rheumy in the area and the only one on our insurance. We waited four hours to see him both times. I gave up and decided we would continue to treat her joint pain with Tylenol and hot compresses/ warm baths for now.
Click to expand...

Kim, did he do any other testing or offer any other reason or advice for her problems? :eek2:
 
Hugs Kim
We had the opposite exp.
The Rheumo stated in the letter to the school that DS had musclskelotory pain 2nd to inflammatory bowel disease.
I am so sorry you had a really bad exp .
DS adores his Rheumo.
 
kimmidwife said:
Carol,
He did blood work and then when it was all negative basically wrote her off.
Click to expand...

:mad2::stinks::ywow:

That's partially why I'm holding off getting the rheum consult right now offered to us. Jae isn't currently symptomatic and I'm not sure that anything would show up on labs, so I'm waiting to see what happens, although we had to wait 3-4 months to get offered an appt as it was...
 
I'm wondering if this relates to C's flares or CD at all. This whole "hosptial experience" has been unlike any of his other flares.

There were no fevers
No mouth ulcers
No GI symptoms until the 5 day/no bm but it went away when we stopped the cough med with hyrdocodone.

There was joint pain(back, knees and feet in the beginning)
weight loss
lack of appetite
malaise/fatigue

With his CD flares, there is a lack of appetite but it is due to the mouth ulcers and tummy pain. The MRE looked good and colonoscopy biopsies looked good(won't have specifics til GI appt)

I thought of drug induced lupus but I think that would show up in the ANA, wouldn't it?

Even C says it doesn't feel like CD flare, I just don't know.
 
Marni is home from the hospital tonight, and she doesn't feel any better either. Just gave he hydrocodoneso she can sleep. A week in the hospital and now that she's home it's the same old thing. When you say C is asking for tylenol, do you mean with codeine or hydrocodone or does regular tylenol work?
 
Sounds Crohn-ish to me too, C. Maybe it isn't the same because it wasn't as severe? Or perhaps because it only affected his small bowel?

Stacey, I'm sorry Marni isn't doing any better. Did they change her meds or give any solutions or answers?
 
Wow, the pictures are lovely. What a handsome boy! Glad he managed to go and have a good time.
Is there any chance it could just be a virus that won't go away? If you both don't feel like it's a Crohns flare then maybe it isn't. Could it be Mono - seems to be tiredness, aches and loss of appetite that came up as symptoms. Hope you get to the bottom of it soon.
 
Marni's Mom, I'm so sorry your sweetie is feeling no better. C has tramadol and was offered hydrocondone px but he refuses both. He says the buzzy headed feeling it gives him isn't a good trade off since it doesn't seem to take away the joint pain. So he uses heating pads and extra strength tylenol they don't take it completely away either but he says they make it bearable.

carolinalaska, C's inflammation has always been in the small bowel, in his TI, now it is just reduced to the ICV, which is narrowed and they don't think the narrowing is due to inflammation. In fact, the PA stated that they didn't see any inflammation and the biopsies didn't show that the narrowed area was inflammation.

It is just really frustrating. His joint pain has always coincided with a CD flare, like clockwork, this joint pain just seems different. If it was a flare then he flared 3 weeks out from last infusion and that will be this Saturday for this infusion, so here is hoping it was viral. They did test him for Mono and it came back neg, Sascot but I really do hope it was some other bug and it just through things out of whack.

I guess we shall see at the next GI appt what he has to say.
 
Love the pictures!!! What a handsome guy you have!

Wow, how frustrating for you re his symptoms!!! How is he today? Can he feel that the joint pain getting a bit better day by day? Was there ever any mention of Lupus?

I've probably missed it somewhere above but when is the GI apptmt?

I do hope today's a bit better for him!!! :ghug: :ghug:
 
He is not doing poorly, the joint pain waxes and wanes for the most part. He says he has a better appetite and seems to be eating more but I really think it is a true effort to avoid the GI wanting formula feeds/ng tube or even adding the appetite enhancer, he hates to add another pill to the regimen.

The GI appt is right before his next scheduled Remi which should be Mid march, don't have the calendar in front of me. The GI nurse could go over all the results with me but I'll have questions so I'd rather wait til the GI appt. But all of the tests looked good so... idk.

And thanks for the pic compliments!!
 
Did they do a pill cam?
Only asking since our rheumatologist is of the thought when all the EIM's are going there is infllammation somewhere we may not have looked in the right spot.
So he always suggests treating as if we saw it .
This leads to fun discussions between all his many docs but in the end the treatment ends up causing the EIM's to disappear .
 
No pill cam was done
None of the tests done showed results that would warrant it so I doubt insurance would cover it. I guess if the joint pain persisted and the Rheumy checked everything out to no avail then maybe we could do the pill cam then. But I think we'd still be hard pressed on getting it covered since C isn't having any "GI symptoms".

I was reading some info about Polyarticular peripheral arthropathy, it doesn't run parallel to disease it seems and isn't a swelling of joints, I'm going to research it more, I think.
 
I was surprised that they gave Marni hydrocodone at the hospital and sent her home with a Rx for it because the Tyelonol with codeine was working. I hate giving her either of those, and I really fear her developing a dependency on them. However, when she's in pain, I will do anything to make her comfortable.

She also suffers joint pain and can only last about 1 1/2 hours at a mall or fair, etc before she starts hurting and complaining. We are actually getting ready to buy a transport chair to keep in the car so when we're in places that require a lot of walking, we won't be slowed down by her pain and complaints. She's excited about it because she won't have to "fear" going out for long periods of time anymore. I don't love the idea, but again, if it makes her more comfortable, then I'll do it. It's Rodeo time in Houston which means a fair bigger than most state fairs. They look forward to it so much each year, and now Marni can enjoy it for the full 14 hour day! :)
That is assuming she's feeling better by the end of the week.
 
I am sorry he is dealing with such pain. Hopefully it is his body trying to grow and you will start to see it. I always worry when B complains of pain in her body. We know this disease can cause so much inflammation in their bodies.

As moms it is our job to think of everything and try to prevent future pain and problems. I am always relieved when it is something natural :)

She still has a limited time of exerting herself, but when our kids finally reach remission, they can build up their endurance again. Which hopefully will be soon for all of them!!!

best to you and C.
julie
 
Johnny had pain in both knees. It was so bad last year he couldn't climb the stairs and took the entire season off of basketball. We found a great orthopedic while we were waiting to get into a rheumatologist. He was diagnosed with Bilateral Chrondromalcia knee. The Ortho said it was made severe because he had taken prednisone, which weakened his muscles and when he started to grown the bone grew before the ligaments and exacerbated it. Our GI had the same condition as a teenager and examined Johnny and confirmed that was what caused his pain. He did 3 months of physical therapy and couldn't do any running, stairs, jumping etc. for 2 months. Our GI said his took about 18 months to go away and that is about what we are seeing. Johnny rarely has pain now and he is at about 16 months.

Not sure if this is at all helpful but I know that we were sure that Johnny's knee pain was related to his crohn's and it was not. The Prednisone made it worse but the two were not related.

I hope you find some answers soon! (((((Hugs))))
 
Hope you find answers soon to the pain.
Hope she feels well enough to enjoy a full day at the fair. sounds like fun.
 
JohnnysMom, thanks I will definitely look into this. When C used to complain about joint pain during "known CD flares" it was generally his back that he complained the worst about then knees. Nothing about this last episode reminded me or him of a CD flare and the tests seem to prove that out but I guess we will know more when we talk with GI.

I'm wondering now about the price of a HACA antibodies test and if it changes if the blood was drawn while in the hospital? I'm fairly sure insurance won't cover it but I'm having a hard time breaking the amounts on the hospital bill down to the individual items. Hmmm...where to start?
 
MLP, just looking online, I saw where in August of 2012 Prometheus(I assume) discontinued the HACA antibodies(ELISA) and started using the one you mention, Anser IFX type. Can I assume then that this is the test that was used when checking C's antibodies?
 
Okay, I just wanted to make sure that C had the anser IFX and not the ELISA but if Prometheus discontinued ELISA the anser IFX would be the only one that tests Human Anti Chimeric Antibodies. I read IFX was deemed more accurate than ELISA and that is why Prometheus discontinued ELISA.
 
One thing else to keep in mind- if he had any remi left in his system then the HACA are always negative-
if there was no remi in the system then it can go either way for the HACA.
 
Wait, can you explain that to me in relation to time frame from last infusion? Are you saying that if he had just gotten Remicade the week before then the HACA would be less accurate unless his body had burned through all the Remicade in a week? Or are you saying if there is Remicade left in his system when tested then that mean he IS neg for HACA?
 
my little penguin, did you notice my post above? I've been trying to research it but apparently not typing the appropriate key words.

Well, C only has 4 days left til infusion, not counting today. He has been doing really well. There has been some weight gain, he lost 2lbs right after discharge but has since gained 6 so we are about where we were at before the crazy episode that necessitated the hospital stay.

Energy has been good,
appetite decent,
normal bms
and no joint pain

So who knows what the heck all that stuff was but it has passed.
Oddly enough he was making it only 5 weeks between infusions
but this latest one is almost 6 weeks out, no symptoms yet(touch wood)

He is approaching the 6 month mark with MTX, wondering if GI is going to change or address that. Also, wondering if he gained enough weight to satisfy the GI...Monday will tell the tale.

Hope everyone is doing well.
 
Glad he is feeling better and hope it continues on (sitting on a wooden chair so hopefully not jinxing anything) Hope Monday appt. goes well.
 
WHAT IS THE RELATIONSHIP BETWEEN
ANTI-DRUG ANTIBODIES AND TROUGH
LEVELS OF DRUG?
A relationship between anti-drug antibodies and
trough levels of drug is implied by the definition of
antibody detection: patients classified as being without
detectable antibodies include both those with a double
negative test (neither detectable antibody nor
detectable drug) and single negative tests (no antibody,
but detectable drug). In the latter case, the test result is
properly described as inconclusive. Since detectable
drug interferes with all antibody assays.
Click to expand...

from:
http://www.practicalgastro.com/pdf/October10/CassinottiArticle.pdf

found it :)
 
C still feels good, infusion is on Monday, but the bms are increasing. He has had 5 today and there was yellow liquid and mucus in them, and they looked like FroYo poops.

I am preparing my list of questions for the GI, he is going to hate to see me coming.

1. Why are was he so happy his colon looked pretty good?(he wasn't the GI that did the first scope but he has the pics) The first GI explained C's CD was in his TI and that his colon looked pristine.

2. How do you know narrowing at ICV isn't inflammation and if not inflammation then is it scar tissue? (PA said they were thrilled not to find granulomas in biopsies because if there had been then the inflammation would be more difficult to effectively treat with the meds and surgery might be required...explain please)

3. The in-service GI(one of the GI's in C's GI's group) said they were pleased it wasn't inflammation, the MRE looked really good, the FC level was only 300(down from 1700 several months ago) and biopsies looked good. If there isn't inflammation then does it just crop up right before the next infusion when I start seeing multiple unformed bms with mucous(sometimes blood)?

4. Is the MTX doing anything or is the Remi doing it's job if we only make a little over 5 weeks before we start seeing symptoms? Is the risk benefit still worth it if before MTX we made it about 5 weeks and now we make it a little over 5 weeks? Is this supposed to improve over time?(almost 6 mos. on MTX)

5. Finally, what was the point of the HACA test if C had just the week before had a Remicade infusion? From the links I've read(thanks MLP) and will print out and take it will be negative if there is Remi in the system.

6. Is there any way his office can start serving wine for the drive home because I will no doubt already be overwelmed and my mind swirling with all the information he gives that has no relation to the questions I ask but come with really neat charts and graphs!

Oh and how is it that I didn't know that I'm not supposed to be touching the MTX with my hands...is that even for the 25mg dose...cause I'm freaking out a bit now!!
 
touching the MTX is only a big deal if your pregnant otherwise-:whistleinnocently: - we just ignored ( at least for 6-mp warnings since I was cutting tablets :smile:)

:eek2: - WHAT about granulomas in the TI means surgery- and harder to treat
NO ONE mentioned this-
DS had multiple granulomas in his TI and caecum.:ybatty:

MAybe that's why he didn't "feel" better until we started remicade-
It would explain a lot.:ymad:
 
At the hospital the PA of the GI group was the most explanatory out of the in-service GI's(1 the first admit different the 2nd admit). The 1st GI talked entirely too fast to understand her and she spent most of the time in doctor speak land, the second was abrupt and wouldn't answer direct questions but rather only pass along what he and C's GI discussed on the phone. I need to learn to be more forthright with wanting answers.

The PA explained the day before we left that the biopsies looked pretty good and that they were thoroughly pleased to not find granulomas. I asked was there inflammation at the ICV and she said I don't feel there is but finding granulomas would've been concerning because they are harder to treat with meds and surgery has to be considered.

It was from her that I really got the feeling the reason we were in for so long(besides them waiting for the biopsies to come back before releasing him) was due to what she called C's sub optimal weight.
 
Great questions clash.
I am wondering about the Remicade myself.... this time around, even after doubling, it has not worked... let me know what his GI says.
 
Hope345, I know...it is confusing. During the loading doses Remicade was magical, we really saw a difference overnight. But since all the "not making it to the next infusion" started I have never known if all of the adjustments are actually doing anything.
 
Great questions!!! Don't forget to post the answers!

But, now I'm wondering about granulomas... aren't granulomas just a small area, like a sore? And, if yes, then could a biopsy result saying 'no granulomas' just mean that they missed the 'spot'? And, again, if yes, wouldn't this make biopsy results a bit unreliable relating to granulomas?

Stephen's first biopsy report (at diagnosis) indicated a 'well formed granuloma' in his stomach but his recent scope said no stomach granulomas. His first scope had three biopsies in his stomach, his recent had only one stomach biopsy.

???
 
Tesscorm, you are thinking along the same lines I am. They were unable to push through the ICV but he did get the "forceps"(or whatever) through to take blind biopsies and alot of them, he had over 20 biopsies in all. But if they were blind were there enough to ensure they just didn't get the right area?

I will post the answers...if I keep him on track long enough to get them HA! The guy is actually really funny and we always leave in a good mood but it is a little like twilight sedation...a little while later you are asking "What just happened?"
 
Clash said:
we always leave in a good mood but it is a little like twilight sedation...a little while later you are asking "What just happened?"
Click to expand...

:lol: Sorry, Clash, but I think that's the wine!:yrolleyes:

It was either Ryan's or Jack's mom who mentioned giving the GI a copy of their questions. I did it last time and it was helpful. BUT, don't give it at the beginning of the interview... first off, you don't want to scare him!:hallo3: but, also, I wanted him to say all he wanted without feeling he had to rush because he had to get through my questions. Towards the end, as I still had a couple of unanswered questions, I just said 'oh, I have a couple more questions but I made an extra copy, (as I casually slid the paper to him) ...thought it might be simpler' :ylol:

Trust me, I do NOT think I am a pushy person :redface: (if I can do this, you can!)... at the end of the day, as much as I don't want to be 'rude', I won't lose sleep over what he thinks or says of me after I leave his office but I will lose sleep if I don't have an answer!:confused2:
 
Tess
Same here I created a one page form for the Gi
I give him at every visit
Docments dates of blood, vomiting, joint pain etc
Then 7-10 bullets on history since last visit
Plus questions 1-4 tops
And any prescription refills

I also give another sheet typed
With all current meds with dose and started date
Past meds with dose and stop date
And current conditions - so all specialists are on the same page
This works well for unplanned ER visits ;)
 
You mean I shouldn't be handing him the binder with dividers for questions, lab results and recent trends, clinical trials of interest, etc. on differently coloured pages for easy identification! :lol:

But, yes, I do keep it to just a few questions and reminders for prescriptions! :thumright:
 
:ylol: Ok Ok Ok I think I have a plan...what if I give the DOC the wine before I hand him the sheet of questions...:hallo3:
 
OMG, that would be too funny... pull out the wine, hand him the questions and tell him to read through while you pop the cork and pour the wine! ;)
 
I think I may use the questionnaire method next time. But I'm going to leave blank space between the questions and ask for written answers. I like our GI but speaking to people is not one of his strong suits.
 
That's a great idea.....

Get the GI drunk BEFORE he makes medical decisions.:yfaint::lol2:


Oh and MLP, I still think you walk around in a white lab coat.:cool2:

Clash
I hope all goes well at the appointment.:ghug:
 
I will be interested to see the explanation about granuloma's Clash. I was under the impression that the presence of granulomas made no difference to the clinical outcome.

Dusty. :)
 
I am interested to hear about the granuloma's as well, Johnny had some in several areas. Please let us know the answers you get.

Great questions!!
 
I will definitely ask about the granulomas but so I don't sound like a complete DA they aren't just looking for granulomas when they biopsy right, I mean aren't they looking for inflammation at the cellular level?
 
Correct - they are looking at cellular changes - particularly acute or chronic inflammation.
There are many things that change in the cells to indicated the type of inflammation.
There can also be many types of granulomas .
Ones specific to Ibd are epithloid non caesating granulomas.
Not all granulomas are created equal.
From what I read the granulomas indicated that there has been chronic inflammation for a long period of time.
But only 30-40% have granulomas found on biopsies.
The number goes up in kids of course.
 
Terminal ileitis is not always Crohns disease

Daniela Bojica, Srdjan Markovicb

University of Belgrade, Serbia

Abstract

Chronic inflammation in the terminal ileum (TI) suggests a cause for the patients symptoms, especially when the clinical suspicion is Crohns disease (CD). Clinic, laboratory, endoscopic, histopathological evaluation of patients is required for the diagnosis of CD. The most frequent localization of CD is the TI. There are many other diseases affecting the TI. Non-steroidal anti-inflammatory drug (NSAID) intake as well as other pathological conditions such as lymphoid hyperplasia, intestinal infections, lymphoma, infections and ulcerative colitis (UC) can mimic CD terminal ileitis.

In this article the authors discuss these conditions, firstly in terms of differential diagnosis, and point out the facts that the clinicians must consider when they have a patient with terminal ileitis. Misdiagnosis of CD may be harmful to these patients because of inadequate response to therapy and occasionally an unnecessary operation may be performed. At the same time, the patients require appropriate treatment for their condition.
Click to expand...

From:

http://www.annalsgastro.gr/index.php/annalsgastro/article/view/1004/742
 
Well maybe there in lies the answer and she meant the presence of granuloma only affect treatment in that they are proof of long standing chronic inflammation and since C had been treated with the big guns for a year if they had still found granulomas then surgery might be in order? I'll ask the GI what he thinks the PA meant by her comment.
 
In response to your posting about ruling out other things since chronic inflammation to the TI doesn't justmmean crohns. I remember the diagnosing GI's nurse said we had to wait for biopsies to come back to ensure CD. I asked what else could it be and she said lymphoma, I almost hit the floor! I was so happy to hear CD 4 days later, even though she said odds were long that it was lymphoma.
 
Good luck with the GI visit. If the GI has a good sense of humor, maybe you just cut the questions into strips and make him draw them out of a hat one at a time! :ylol: Might as well have some fun with it!
 
This needs to be copied and pasted into a new thread: dealing with GI's.

so funny!!!

My daughters GI scolded me about sending questions on different days. So I saved them up and sent 10 at once. you know how many she answered? one.

We have such a short time with her GI. I feel like we spend the first 15 minutes bringing her up to date as to what type of Crohns she has, what meds, last treatments, what treatments... which should all be in her chart, and then she will start talking about the scenery. I am all about being casual, but when she tries to wrap it up quickly after the scenery talk (I mean the pictures on HER walls in the office), I leave a little dumbfounded sometimes...

We meet in two weeks and I am bringing my list, wine and WHINE lol

"keep up the good work" is not going to cut it this time!!

Let us know how the list works and hope you get the answers you need Clash.
 
Clash, thanks for that list of questions. Seriously, it sounds like your recent hospital experience is very similar to ours in what we're trying to accomplish and figure out.
I'm waiting for the in-service doc and the fellow to come by in the morning so we can talk this out. My husband has been here with Marni while I worked on Friday and today, so I wasn't privy to their conversations. Thanks to you, I'm going to have a bunch of new questions for them. I'm sure they'll be thrilled. LOL.
Stacey
 
Yeah we get 45 mins to an hour with the guy, but like you said the first part is spent catching him up on the specifics, then he spends a good 5 minutes wheedling info out of C which goes one of two ways:

I'm fine, good, uh-huh
or
like that scene from The Goonies where the Fratelli Brothers have Chunk tied up trying to get him to talk and he spills every secret he has had since 5th grade!!!

C will be all "There's this itch behind my knee and when I sneeze I feel a pull in my ankle and sometimes when I stretch I get this tickle in my throat and I don't know if it is related but my big toe is red when I take my shoes off."!!

Then I have my question time, I ask the first question and we spend five minutes of him bragging(Thanks forum and MLP) on me and how I would know that there would be a correlation between A and B and how he is just dumbfounded by what I seem to understand but do I know the mechanism behind that cytokine producing blah blah blah. Then out come the charts or he just draws them on the back of C's folder(I wonder how many folders they have to replace as long as he is wielding a pen)...

so I generally get one question answered too...but I've learned the secret weapon. What I don't get around to I call a couple of days later and ask the GI nurse, she calls the doc gets the answers and all is right and wine-filled in my world once again..

Seriously? "When I sneeze I feel a pull at my ankle?" Help a Momma out here son!!
 
Clash said:
C will be all "There's this itch behind my knee and when I sneeze I feel a pull in my ankle and sometimes when I stretch I get this tickle in my throat and I don't know if it is related but my big toe is red when I take my shoes off."!
Click to expand...

Hahaha really made me laugh!!! :rof::rof::rof::rof::rof:

I read it to Jaime! She straight faced said 'Mum I get that sometimes!' LOL I laughed so much, she was just looking at me like I'd lost the plot :lol:
 
Ok so one off day then yesterday seemed good only 1 bm or so he says. He had plans for the night so that could've skewed his reporting plus I didn't get a look at the bm, he said it was good but again...teenagers.
 
Your posts above made me laugh!!! Hmmm, I'll have to ask Stephen about red big toes! :eek:

Maybe I missed it, but when is your GI apptmt?
 
Ryan gives the same off the wall or vague responses to the GI. Mostly, they are barely more than a cave man grunt! :facepalm:
 
I would think pediatricians would understand this about teenage boys!

At one of Reed's last appointments, his doctor and PA asked how Reed was doing. "Fine." That was it. There was a long silence in the room as my husband and I and the medical staff were waiting for him to elaborate. We waited and waited. Finally I broke the silence by saying, "Oh, please! You've been complaining everyday for a month and now everything's fine?"

The PA was great. Her questions were so specific, and Reed has to answer yes or no to each and every one of them. She grilled him! I actually learned a lot! I feel like this interrogation technique is in her bag of tricks, and she pulls out the third degree tactic on kids like Reed.

LOL! Teenaged boys!

At UCSF the ped. GI will see the kids until they are 24. Maybe they realize the adult GI's might not get young adults the way they do.

Kimberly
 
I thought it was just my daughter LOL!
Lately caitlyn refuses to let me see her BM 's as well. She is comming to that age when everything embarrasses her especially her parents!
 
WE get"fine" here as well or what is happening right that second not the previous 7weeks or even five days.:ybatty:

but he is only 9.
WHen the doc asked about his brother of course he got the long winded version:yrolleyes:
 
Thanks just got online to update:

The appointment went well, I have a copy of the MRE results and we did have an in depth conversation about it all.

I got the copy of MRE at the end of the convo and it has my mind spinning a bit.
But first a recap.

GI says it wasn't that there is no inflammation, there is inflammation at the ICV but he feels it isn't all inflammation but inflammation/scar tissue in that area.

I printed out MLP's little paragraph with link about the HACA levels and he basically agreed that the HACA levels test was probably a wash. He mentioned C's Remicade level(6 days after infusion was 34)

He did some of that discussion/wonder out loud if may we should drop Remicade and stay on MTX and see how he does
If he doesn't do well we could add one of the other biologics or do surgery.
He says C is a good surgical candidate because he doesn't have full colonic involvement with his CD and there is no proximal dialation
so after resecting the part that is narrowed(ICV) the ends sewn back together would be the same size and there would be no tapering involved.

Note I said he said there wasn't full colonic involvement;
The MRE Impression states
Thickening and enhancement of the wall ileocecal valve.
Mild enhancement wall of ascending colon
Trace enhancement right perianal soft tissues of uncertain clinical significance.

He wants to take some time go over all the stuff and in the mean time C got this remicade infusion and scheduled the next one 6 weeks out. He doesn't want to go back to five he said if C can't make it 6 then back to the drawing board and if symptoms arise before this 6 weeks is up to contact him.
 
It sounds like you were able to discuss quite a bit with the GI. As C is already on MTX, I'm confused by the reasoning of dropping remi and just staying on MTX - I guess he's wondering if the remi is doing anything at all?? But, it seems to be doing 'something' since you say C's symptoms begin to appear a bit before his next remi infusion...

Did you discuss the joint pain? Does he believe it's related to the inflammation in the ICV?
 
I think the object is to move to another biologic or surgery but no harm in going on with MTX if symptoms pop up then we'll have the next biologic or surgery plan ready but in the end he said we will stay on Remicade if he can make it 6 weeks if he doesn't then we have to come up with something else.

This past 6 weeks he made it all the way to this last Friday(three days before infusion) he had 5-7 bms with mucus but everything was fine since then, back to 1 bm, firm, no mucus.

Oh he had an idea of what the PA may have meant by the granulomas, he said there are several studies that indicated the presence of granulomas may indicate more aggressive disease and/or relate to more surgical intervention but that there are other studies that do not show a correlation. So....maybe that is where she was coming from.
 
Ugghh...since C hasn't had the joint pain I didn't include it in my questions and completely forgot! Ughhh...I'll have to call GI nurse.
 
But back to what I was going to ask, "What's everyone's impression of the MRE summary?"

It seems the combo of MTX+Remicade May not be the answer and though we will still be utilizing it forvthe time being, C's GI is always going on,about full mucosal healing being the goal so I do smell change in the air.
 

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