Stephen's update and transfer

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Hi Tesscorm -
Did you hear back from your doc yet on the liver enzymes. I was told by my older son's doctor (after meningitis teatment) that those enzymes can go many times higher than the reference range ... so hopefully Stephen's numbers are not dangerously high ... but it would be good if they could be brought back down.
 
Haven't heard back yet... I asked the nurse to inform me re moving up the apptmt with the new GI and also questioned the connection to weightlifting. I've done a bit more reading on this and it does seem very coincidental that it is specifically weightlifting (ie muscle injury) that can elevate AST and ALT, his last tests were done in April and he began to weight lift in approx May/June, has probably been overdoing it at times (even before the test results, there have been times my husband and I have told him to build up 'gradually', not go into it 150% right away!) BUT, of course, all I've read is all based on 'healthy' men, not those with crohns.

Hopefully, I hear back soon. It's very disappointing, I really feel like we've been tossed overboard with only a small lifeline! Yes, his current GI WILL see him BUT seems to be only on a 'absolute need' basis - ie, no real 'preventative' follow-up and I'm going to guess that his new GI will not move up the apptmt as I'm not sure that these AST/ALT numbers are 'dangerously' high (current GI once mentioned he would be concerned if they reach 200+)... If we cannot move up the apptmt, I will speak to his GP and have his GP retest in a few weeks and take it from there.

I'm also starting to question/worry about transferring to another 'big' IBD clinic in another well respected hospital - I'm feeling like patients are treated on a 'relative' basis, rather than an 'individual' basis - ie Stephen's so much better off than the much more serious cases who are IN the hospital, that his case loses priority. Certainly don't want to take away from kids who are seriously sick and these are the hospitals I would want to be in a serious situation but, perhaps, on a 'maintenance' basis, Stephen would get better care from a GI whose caseload isn't filled with 'serious' cases??? I really don't know???
 
It does seem very coincidental Tess and I would also lean that way if his condition is relatively unchanged. Hopefully they will stop sitting on their hands and get in touch with you!

I don't know what to say about the change Tess. Sarah attends a large hospital now but the system here must be a little different because she doesn't attend a clinic but rather still sees the GI in his rooms. I can certainly see your concerns though.

Since it is a large and well respected hospital do they have a Department of Adolescent & Transition Medicine?
When Matt was admitted to an adult hospital in Sydney last year they had a team from this department that visited everyday. Granted, he was an inpatient but they also provided information and support for outpatients and advocated and liaised for young people...

http://www.sswahs.nsw.gov.au/sswahs/youth/

...perhaps search the website of the hospital you are transitioning to and see if they have something similar. It really helped Matt out with the services they provided.

Dusty. xxx
 
Dusty, when I've referred to 'private' clinics, it may be similar to Sarah's situation. Many, if not all, doctors here are affiliated with a hospital and, I imagine??, attend to their patients IN the hospital when applicable (again, I imagine, working with the specialists based IN the hospital). But their day-to-day practice is based outside of the hospital and that is where you see them.

Stephen current GI and new GI are based in the hospital and I, once more, imagine that much of their caseloade is comprised of INpatients in much more serious condition (ie as when Stephen was diagnosed), once they are stable, they become an OUTpatient in GI's caseload. But, every day, these 'in hospital' GIs are getting new INpatients (whether new or an existing patient with new problems) - someone who is stable, as Stephen is, will understandably drop down in priority. It is less likely that a GI based outside the hospital will be adding serious problems to his caseload as frequently.

Just all conjecture on my part :)
 
Ah okay, so much the same system as us then. GI's that are self employed (private) and have visiting rights to the hospital and GI's that are salaried that work for the hospital. Gotcha! :)

Dusty. xxx
 
I've been wondering about something... thought I'd ask your opinions :)

Months before Stephen was diagnosed, he'd had lots of back pain. He'd injured his back at the gym in Aug/10, it got a bit better, started hockey in the fall (5-7 times/wk) and, with the movements and hits, back began to hurt again. It would get better for a few days, then he'd get hit or twist awkwardly in hockey and would hurt again. At the time, there were no GI issues and his GP felt 'tightness' in his back so recommended PT, massage and ibuprofen before games/practices. This went on all winter. GI symptoms started in Mar/11 (possibly Dec/10??) and he was diagnosed in May. No clear answer as to whether the back pain was an early EIM of his Crohns or if the constant use of ibuprofens triggered (or contributed to) his Crohns.

Back pain went away over the summer as did the crohn's inflammation once he began EN (but, hockey frequency also lessened significantly and no hitting allowed in off-season). Other than the odd, relatively mild twinge, his back has been good until now (although he did have a mild shoulder separation over the winter which is still bothering him).

The last few weeks, he's been complaining about his back again. It's bothered him enough that he's begun sleeping on the floor (carpeted and with a blanket :)) because he says it really helps minimize the pain. Last night, it was so sore that he couldn't get comfortable on the couch and had an epsom salt bath (and still sleeping on the floor). But, yesterday, he also spent the day helping a friend move, lifting furniture all day. Since the spring, he's also started to weightlifting regularly.

His recent tests have also shown rising ESR and CRP. I'm trying to figure out if the back pain is reflecting intestinal inflammation (he has no other symptoms, I've asked! :blush:) or, if its possible that it's a combination of him having a weak back, compensating for his sore shoulder and probably overdoing it with his weights?? And could this be the cause of the rising ESR and CRP?

I'm just a bit worried that if it is an EIM, things are worsening and our first adult GI apptmt isn't until October.

Thoughts?
 
Hi Tess,
I remember reading on this forum that back pain can definitely be an EIM for crohns. I saw a thread on it somewhere I can't remember where but I know it was in the adult section.
I think you need to see about getting his appt moved up. October is way to long to wait. About the weight lifting how much is he lifting? How often is he doing it? I mean over living can definitely strain the back. Has he suddenly begun lifting a lot more weight? That could also be another explanation but with the rising lab tests I would more think this is crohns related. Can you call and get him in sooner?
 
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I think you're right, Kim. I need to get that appointment moved up. I'm sure I put him on the cancellation list when I initially made the appointment but, will call anyway.

It wouldn't surprise me if he's overdoing it with the weights (don't know how much he's lifting??) but he's come home with a 'more' sore shoulder a few times because he's done too many shoulder exercises. And, he's been all gung-ho in building muscle lately, upping his proteins, etc.; he's working out 4-6 times/wk. My husband and I have both told him that overdoing it is just going to take him 'back', ie, if he's injured, he won't be able to do anything but... he's 18, he listens, then 'forgets'.

His back isn't as bad as it was before diagnosis and, when taking into account the weights, the furniture move yesterday, and that his pain does 'seem' to be tied to strain, it makes sense... but, it worries me because before diagnosis, we had LOTS of excuses for the pain too... gym, hockey, growth spurt, slouching, etc.

Unfortunately, I try... really, really try to stay in that sunny world of denial but that 'alarm' is just buzzing around in my head telling me I've got to leave :(

And, I'm worried too that this new GI is just going to want to put him on metho and then what do I do???? I really want to try LDN first but, what if he doesn't??? Not looking forward to that crossroad!
 
Tess,
If you want to try the LDN first you may have to be firm with the doctor. Tell him you have done your research and this is what you want to do. I had to be firm with our doctor it took some convincing but he finally agreed to try it.
 
:hug: Agree if you want LDN be firm-
however raising bloods, back pain...all indicate things are moving in the wrong direction.
If you end up with Methotrexate- DS has been on it for 2 months.
Other than the first two shots - no real "side" effects. His nails seemed scratched but he also is swimming 4 days a week so....

We also didn't see any improvement either even when we increased the dose.

Good luck.
 
I will be firm, pushy, etc. re the LDN but, if he outright refuses, then I don't know what to do... I certainly can't leave Stephen untreated but it'll kill me to know that there's possibly a safer alternative out there and we haven't even tried!

Forgot to mention above that his liver enzymes were also elevated at last test... that might actually give me a bit more ammunition as to why we should NOT try metho right away. :confused2:

Asked Stephen how his back is tonight and he said it's fine. Said when he sleeps on the floor and moves around, he can hear and feel his back cracking/popping :eek: and that he can feel the cracking makes it feel better. :confused2::confused2: I really don't know but comments like this make me think it's more 'muscle strain' than 'crohns'???

I don't know what to think :yfaint: But, in any case, have left a message at new GIs office...
 
Just catching up on your thread - your poor brain must be in overload!! It's so hard to tell whether other problems are Crohns related or not. I would have said that the back pain had been related to the Crohn's since it eased when he went onto the EN, however it does seem to be related to his starting the weight lifting and moving furniture, so maybe it's that. If he has a "weakness" in that area anyway, then excessive excercise would certainly make it worse again. I agree it's worth pushing forward the GI appointment, but maybe worth seeing a physiotherapist again just to cover all bases? If a physio told him to take his training more gradually, he might be more willing to listen to someone that isn't "just mom & dad". Hope it settles down
 
Hey Tess,

I'm so sorry to Stephen is having back issues again. :(

Has he ever had X-rays done?
I wonder if he could have either Sacroiliitis or Ankylosing Spondylitis (AS). AS is particularly prevalent in young adults and adolescents and tends to affect males more than females. It's appearance is in independent of disease activity. Just may be something mull over and look into.

I agree with getting the appointment moved up if at all possible. If his disease isn't in a good place and the GI is insistent on moving onto the immunosuppressives, remember they will take some time to work hence all the better for an earlier appointment, then I would go that way to get the disease under control and that way you can buy yourself some breathing space to size the new guy up and your chances of getting LDN out of him. If it will never be a goer then you can start looking around and making enquiries. You can always go 'back' to LDN if you find a like minded GI.

Good luck hun, I so hope things soon settle for your boy. :hug:

Dusty. xxx
 
Thanks Dusty,

Yes, Stephen had back x-rays when diagnosed and GI referred him to a rheumi, which he saw in Oct 2011. No issues found.

So, some days, I think it really is just a 'weak' back; but, other days, I'm not so sure... I can, very neatly, tie in his back pain to his crohns' inflammation, crohn's treatment, test results, etc. And, I can, just as neatly, tie in his back pain to growth spurts, injuries, hockey, weight lifting, etc. :yrolleyes:

And, I hear you re the meds... the sooner I can get him in to the GI, the sooner I can move ahead with 'whatever' we need to do...

Hopefully, I'll hear back from the GI's office tomorrow and, hopefully, am able to move up his apptmt.


Sascot - thanks, we are going to send him for some more PT - for his still sore shoulder and now his back. Could be that he is compensating for his shoulder pain by altering his posture??? Not sure if that could be the case or not?
 
Ah the joys of exercise - they say it's good for us and yet sometimes causes alot of trouble :ybiggrin:. It's def possible that he is overcompensating for his sore shoulder which might hurt his back especially if it is weak any way. Maybe the pain ties with the Crohns because when his body is flaring it might not be able to cope with the exercise that it can normally cope with when not flaring. I suppose it would be like doing the weightlifting while you have the flu/a cold - your body would be extra tired and sore afterwards!
 
Sascot said:
Ah the joys of exercise - they say it's good for us and yet sometimes causes alot of trouble :ybiggrin:.
Click to expand...

My reasons exactly for NOT exercising! :lol:

This quote always makes me smile...

I believe that the Good Lord gave us a finite number of heartbeats and I'm damned if I'm going to use up mine running.
 
Hey there...just getting caught up. I see that you posted at 10 a.m. so I am guessing still no word with moving the appointment up. What ever happened with his ped GI called and asking for them to move up the apointment? Did you give the GP a call to get their take on the situation?
 
Actually, just called new GI again a moment ago :) Their computers are down so nurse asked me to call back in 15-20 minutes... (better than a straight 'NO' :lol:)

And, nope, never heard back from ped GI - I think their position really is that they will see Stephen if it's 'almost' an emergency but, aside from that, he's no longer their concern :ymad:

And, did follow-up with GP, he said that although liver enzymes are elevated, he doesn't believe they are dangerously so yet but do warrant follow up. We are going back in a couple of weeks for the follow-up tests. :)

So still... w.a..i...t....i.....n......g...
 
I need a little smiley face (ok, not 'smiling') that's yelling until it's blue in the face!!! Have been going back and forth with Stephen's new GI's nurse: left msg, called her back but her computer was down, she called me back I explained re enzymes and moving up the apptmt. She'd said that the GI was away for most of the rest of August but, on the couple of days he was in, she would have him review the file and see if there was a need to move Stephen's apptmt. Okay, I'm good with that.

Then, she calls back today and says that they haven't received recent tests from the ped GI, last ones were from the spring - no tests showing the elevated enzymes and no phone call when they'd said they would try to move up apptmt !!!! OMG :voodoo:

The hospital is supposed to be world-renowned, blah, blah, blah!!! Maybe their doctors are 'great' but their administration sucks! So, thought I was done with them but, guess not! Now, gotta get back to him AGAIN, requesting the results, why they haven't sent them and WTH happened to the phone call they were supposed to make!

Whew, just letting off some steam here before it all comes out in my phone call to them! :D
 
Wow, don't blame you for ranting!!! That is so frustrating. You would think transfering notes, etc would be fairly simple but you seem to be having a bad time of it. Hope it gets sorted out soon
 
It really does seem that it's been one step forward, two back! I'm truly a nice person :lol:, I have honestly always given them the benefit of the doubt when there's been a 'question' but, honestly, whoever is running this end of it needs to be fired!

Totally unrelated to this apptmt and a different department, I called their Health Records this morning to get the final set of Stephen's records (had it until mid-May but, at last request, we were waiting for the final letters, docs, etc.).

The conversation was something like this:

Me: I need the records from May 15 to now, have you received the final docs that were missing two weeks ago?

Them: Oh, I remember... yes, there were some outstanding results because they had been sent out of our facility.

Me: Okay??? So do you have them?

Them: Hmmm, I don't see anything pending.

Me: Okay, I don't know what was sent out but you have everything now?

Them: Well, we haven't received what was sent out.

Me: Okay, so do you know when you'll receive them.

Them: What do you mean??? Nothing is pending.

Me: But, I thought you just said the test sent out hadn't been received.

Them: Oh, the IBD dept is so confusing sometimes. They always send things out. But, I'm not showing anything pending but I'll call to see when they are sending the results.

Me: So, you are still missing results???

Them: No, I don't think so. Everything is here.

Me: Including the tests sent out?

Them: No, those haven't been returned. I can send you what I have right away.

Me: No, I'm not in a rush. I can wait until you receive the final tests.

Them: Nothing's pending. But I'll call the other dept and if I have everything I'll let you know by Friday.

Me: So, if I don't hear from you, I should wait a bit longer for the missing results.

Them: No, nothing is pending but you can call if you're worried. I'll let you know.


:angry-banghead: :angry-banghead: :angry-banghead: :angry-banghead:

I swear to God, this may not be verbatim, but it is very close!

So, I still have no friggin' idea if something is missing! Nor if I'm supposed to call!!
 
Your conversation reminded me of the great OLD TIME classic skit. WHO'S ON FIRST?
If you haven't heard of this watch it and you'll understand! PRESS HERE!


I'm sorry you had such problems. I hope they get cleared up soon.

Farmwife
 
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Yes, that's exactly what it felt like! I was actually laughing when I got off the phone because I really didn't understand what had just happened! :lol: (I think I looked like Grace's picture when I hung up... just not as cute!) It was such a bizarre conversation, it's still making me chuckle when I think about it. :)
 
Stone the crows Tess! Fair dinkum, what a deadset nong! Did she think it was bush week or something? 'Bout time she hit the frog and toad and found herself another corn on the cob!

Did that make any more sense to you??? Methinks not!

My goodness Tess, I hope you can get some sense out these people and soon! Fingers, toes and everything else crossed!

Dusty. xxx
 
I sometimes really wonder 'is it me?' Am I too much of a PITA mom, making too big a deal about this stuff? But, then I step back and think... but, I'm only asking that they follow up (the records, well, there's no urgency... she's a nice lady and the conversation really just left me wondering 'where did it go so wrong?' :lol:) So how could I be making too big a deal? The funny thing is the one trait that people always use to describe me is 'totally laid back and relaxed'! But, somehow, the people at the hospital must think I'm the ultimate b...ch who's always complaining! :eek:
 
You ARE such a PITA Tess! :lol:

Nah, people only think that because you are catching them out not doing the job they are supposed to! Nobody likes to be told how to do their job, especially the ones that aren't...you know the type, couldn't organise a root in a brothel! :rof:

Dusty. :ybiggrin:
 
OMG, I'm having some very nasty images of what a root in a brothel is! :eek: and :yfaint:

:rof:
 
Get outta here you two! And you Farmwife! Don't you be telling me you don't know what a root is when you live on a farm! :rof:
 
Well know, DustyKat :ytongue:I sure know what a root is but what in same hill does that have to do with a brothel????? I'm missing something? :shifty:Which isn't hard to beleive.:D
 
Oh okay then...(((sigh)))...

Couldn't organise sexual intercourse (a root) in an establishment frequented by prostitutes (brothel). :)
 
:rof: :rof: Is that what a root is to you guys down under?!? Being a city slicker, way up here, the only roots I know are thin little floppy things... not what you'd expect in a brothel! :eek:
 
Oh no Sascot! Poor hubby will never be able to satisfy you again! :(

Oh my goodness Tess, I hope Stephen never comes on here to catch up on his updates! Ahahahaha, your image as 'Mum' will be forever tainted and he will be scarred for life!
 
Okay, I pop on this thread to see what's up with Stephen and the first thing I read is Dusty saying Sascot's husband is never going to be able to satisfy her again :ywow:. I'm almost afraid to read further up the thread :ylol:.
 
Dusty - I think I would be MORE traumatized if I ever read any of Stephen's updates! :yfaint: Ignorance is bliss! My baby... :Karl:

Shelley - you've been away much too long! :D Things have seriously derailed here! You'll have to jump onto Farmwife's 'Much Ado about Nothing' thread!! :lol: How is S doing? I hope he's doing really well and enjoying his summer!!
 
Mom2oneboy- I swear I have nothing to do with 'Much ado about nothing' :yfrown:

other than being a casual contributer
it was DustyKat putting that one to together.:nonono:
Nothin like passing the buck y'all!:ybiggrin:
Hey I should run for office.:rof:
 
DustyKat
That's one area I haven't kissed on my girl.
I'm sure not in sam hill gonna go kiss your!:cool:





:ybiggrin:
 
Hahaha...this is you kissing my arse...
kissass.gif
You look like you are enjoying yourself!

And who the hell is sam hill??? I saw that mentioned in one of your other posts and thought it was typo!

Dusty. :ybiggrin:
 
Sam is a man that climbed up a hill.
We pay tribute to to him because.............:shifty-t:
he climbed a hill and his name was Sam.:rof:


It's just a saying around these hear parts that we use
to show our frustration in place of using a swear word.:thumleft:


Another fine American tribute to the English language, made up by country folks.:ybiggrin:
 
:rof::rof::rof: OMGosh! You guys are killing me. I am so mad at my life for getting in the way of my Crohns (and I use that term loosely) updates. Now I will never get caught up because I have to look up all those Aussie sayings Dusty used in her original post.

Yet another thread hijacked despite the much ado thread. We are hopeless!
 
Jmrogers4 - You tell you boys about ever thing but the "roots"
Those Aussie's sure are weird.:rof: ( Just kidding:yfrown:)
 
Like they need another name to call it by:ycool:
Funny story when my lil tater tot was about 5 years old and well potty trained we started having all these accidents couldn't figure out what was going on, he'd go pee and about 5 minutes later would be soaked, well come to find out his urethrea (or however you spell it) was too small and needed to be enlarged. The pee would back up and then leak out.
When he told his cousin he was having surgery on his penis to make it bigger, his cousin thought he was having the whole penis enlarged and wanted to know if it would be as big as his dad's. We still chuckle about that. :rof:
 
YIKES!!! Just caught up on the thread...never know where they are going to lead but always find my self in tears with the laughter!!!
 
Just tell them we're talking about growing things! And if you talk really nicely to your roots, you never know what will grow! :lol:

Hey Farmwife, you gotta be kind to those roots, let that root grow before you chop it off! :D
 
Bahahaha my 18 year old makes such fun of me laughing all the time she comes in sees the screen and says, "Oh it is your Crohnies". She makes fun at the dinner table putting your names in finger quaotations. One day I told her some of your real names and she said noooo you are ruining it for me...they are so much funnier with their made up names.

Come to think of it I don't know DustyKat's real name...let the guessing begin...Agnes the Aussie?
 
Betty Boop?

(You know, I think we should change this thread's name to Much Ado..."2" :lol:)
 
Those Aussie's sure are weird.
Click to expand...

Strewth Farmwife! I thought you were my china plate! :rof:

Oh and keep guessing! Ya'll could send me a friend request on fb to find out...oh hang on, you have to know my name to do that! Too bad, so sad...:cry: :ylol:
 
Not sure how long ago Stephen was mentioned on this thread :lol: but, thought I'd give a bit of an update... just cuz I'm a little happy...:) (as his last tests in July had showed that everything was a little bit worse, I was kind of expecting 'even worse').

Stephen's results back from his annual physical last week showed almost everything's a 'little bit better'! :thumright: It's not all in the 'normal' range but it's either just at the edge or moving in that direction!

His CRP went from 27.3 in July to 11!!! But, the one 'bad' result was his ESR went from 26 to 35??? I know ESR is slower to respond but anyone hazard a guess why they would move so much in opposite directions?

His liver enzymes are a bit better... still a bit high but lower than in July (Dusty, I didn't let him do any weight lifting for more than a week before the test!! Maybe it does make a difference??)

One thing I'm confused about... And, maybe this is another 'bad' result??? His ferritin in July was 15 and that lab's normal range was 10-82 ug/L. This time, his ferritin is 20 but this lab's normal range is 31-300 ug/L. That a big difference in normal ranges. Can anyone explain that?

We've got our new GI apptmt on Wednesday!

:)
 
Woohoo things moving in the right direction!! I hope the new gi appt goes really well too!
I don't have any info on ferritin level differences, except with C's one lab used adult and one lab used kids which really had me confused until doc explained!
 
Hmmm, that might be related as the 'first' lab was the children's hospital... But it still seems to be a big difference in ranges??? I was looking back thru his old tests, one showed the ferritin - stool (instead of 'blood') and it had ranges of mid 30 to 300+ - I'm wondering if this lab somehow gave the ferritin-blood result but showed the ferritin-stool range??
 
Could be and I was thinking the same thing even if it was child/adult seems still to be really big gap.
 
Increase in ferrin level is a good result if the hemoglobin level has increased or remained stable.
 
Well every little thing that's a bit better is good! No idea on the levels.
Just wanted to wish you good luck for the appointment. I am away on holiday till Friday so will check in to see how it went.
 
Thanks for the update Tess. :)

It is so good to hear that things are generally normalising for Stephen. YAY! :ybiggrin:

There are three things that spring to mind with a discrepancy like that between ESR/CRP. Well four actually, the first being that for some people ESR is a better indicator than CRP especially if there is any rheumatoid issues going on. Second is renal insufficiency but I don't know that Stephen has those problems which brings me to the last two and in my mind perhaps the most plausible...either an underlying infection of some sort or, and this is what I would be most interested in, is a low albumin. Quite common in Crohnie's and particularly those with TI involvement. It should be listed in the baseline bloods.

I think exercise does make a difference with LFT's but that is just my two cents worth! :wink:

Now to the ferritin. I had a look back at the results of my two and using the same lab. Up until about 2008 Sarah's reference range was listed as 15-165 ug/L then as Matt's has always been it changed to 20-300 ug/L. The only notation I can see is...*serum ferritin UNL (Upper Normal Limit) has increased from, I think, April 2008. The only thing I can think of in your case is different labs???

Good luck for Wednesday! I have everything crossed it's a good one!!! :goodluck:

Dusty. xxx
 
His HGB had dropped down to around 120s but is back up to 131. So, moving in the right direction again (our normal here is 140-175).

I'm also assuming the increase in his Ferritin is 'good' but just odd that at 15 it came be as 'normal' and now, at 20, it came back as 'low' because of the different lab's normal ranges. I'd wondered if there were different 'types' of ferritin that would explain the difference in the ranges but... guess not.

Albumin is normal.

His shoulder still regularly 'bothers' him (since last year's separation). It's not painful enough to keep him from doing his usual activites like hockey (no more hitting!! :)) or weights but very often more sore after these activities. Perhaps, that's enough to affect his ESR???

But, all in all, I'm good with the results :) As I said, almost all results had been a bit worse in July, ped GI was talking metho and I'd been worried I was heading into an apptmt with a new GI and instant decisions re medications! :facepalm: I feel like I've been given a bit more time to discuss LDN with the new GI without being under pressure to do something NOW! :)
 
There is only one Ferritin level, the only other things listed that look like Ferritin are Ferrin. Iron studies should look like this:

Iron (5-25) umol/L

T'ferrin (27-53) umol/L (T=Trans)

T. Sat (12-24) % (T. Sat=Transferrin Saturation)

Ferritin (20-300) ug/L

If he has chronic inflammation festering away with that shoulder it may well affect his ESR result. Also doesn't he have some low level inflammation still happening in the TI?

Dusty. xxx
 
Thanks Dusty, unfortunately, none of the others you mentioned were tested last week. (Last week's apptmt was his annual physical, so perhaps transferrin, iron, etc. are outside of 'routine' bloodwork??)

And, yes, his last MRE in May showed inflammation which coincided with the higher CRP and ESR in July. Just curious that his CRP went down a fair bit (27 to 11) and his ESR went up (26-35). The last time his CRP was this low was last August; the last time his ESR was this high was when he was diagnosed (altho it was even higher, 60+). Nothing ever makes any sense... :duh:

Would it make sense (bubble speaking here...) that the 'acute' inflammation in his TI is improving thus lowering the CRP but 'ongoing, chronic' inflammation in his shoulder is causing his ESR to rise/stay elevated? Does that make any sense, ie does CRP react more sharply to acute rather than chronic inflammation?
 
Yep, was thinking that! His ped IBD clinic didn't do fecal calprotectin nor lactoferrin - said they didn't have approval yet for that testing (???) but that maybe the adult IBD clinic he was moving to might already have the approval. Whatever??? Haven't a clue what approval he meant but didn't matter as obviously he couldn't do it.

Am going to ask tomorrow.

Wish me luck... I hope all goes well with the new GI! :)
 
Good Luck Tess! Although with all the crap I know you are going to hit this guy with maybe he is the one who needs the luck! Got your LDN folder? Ball vice?
 
:rof: I most certainly do have my LDN folder!!! :lol: Told my husband the GI was going to have homework tomorrow! It's in a green folder (my fave colour), with dividers separating the studies, articles and anecdotal evidence! With a shiny label on the front indicated LOW DOSE NALTREXONE! Too anal?? :redface:

And, also bought a new binder to keep all Stephen's info, also with dividers! Am trying to decide if I print him a copy of my spreadsheet showing all Stephen's blood results quickly identifying trends! :lol: By the end of the apptmt, he may be squeezing the vice grip himself... :sign0085: you know, like pinching yourself to wake up from a nightmare!
 
OMG, we discussed so many things today I don't even know where to start... can't even say if it was good or bad as it was both! :( So, get out your coffee, wine, cupcake or whatever you need to stay up... I'll try to keep it as short as possible BUT :ywow:

So, the doctor... Stephen and I both liked him, he was very easy to speak with, very patient, answered all my questions, open minded, supportive and, prune my magnolias, a hottie as well! :) Had only a couple of 'disappointing' moments...

He's concerned because Stephen's inflammation is in his small bowel (vs. the colon) and that the May/12 MRE mentioned inflammation in the TI and some in the distal loops. Unfortunately, comparison with the Nov/11 MRE can't be made as the 'technicians' ('persons'?? who reviews the MRE) mentioned 'different' issues so he's not sure if the inflammation in the distal loops is new, there's some tightening mentioned in one MRE but not in the other, etc. His concern is that issues can or may be progressing and he doesn't want it to result in surgery. His recommendation is that Stephen start Remicade (or Humira, if he prefers the weekly shot)! Okay, is it just me, but doesn't that seem to be quite the recommendation to be making based on 6 and 12 month old MREs and blood tests from July and last week (ordered by other doctors)???

Enteral nutrition - he thinks the only benefit Stephen is getting from the EN is the nutrition. He doesn't think it's having any impact on the Crohns (except during the exclusive period). From his perspective, he's not on any treatment for Crohns currently. Isn't suggesting stopping it but seems to be totally up to us if we want to continue.

Will give us LDN if we want!!! Has no problem prescribing it if that's the route we want to take but he believes it's ineffective. His only concern with LDN is that while we 'try' it, Stephen's crohns could worsen. But, will write the prescription, will follow Stephen and will schedule another MRE in approx. 4 months to follow up. But, he has virtually NO experience with LDN (although did have one or two other patients try it years ago with no success), and was unaware that it needed to be compounded, dosage, etc. But, did take my green binder, quickly reviewed it and asked the student who had been present to review it and get back to him about it.

Stephen's 'new' symptoms... Stephen mentioned that once in a while, when he has a large stool, he has some pain for a few seconds, can see a streak of blood on his stool and there's blood on the tissue. Said it only happens once in a while and only with large stools... so, sounds like a fissure but is it caused by crohns flaring or just by the stool size (so, in that sense, not caused by crohns)??

So, how do I feel... :eek2: :yfaint: :confused2: :runaway:

I'm a little bit disappointed that he ran absolutely no tests... student was the only one who examined Stephen (ab, weight, etc.), no rectal exam (even with possible fissures), no bloodwork ordered, no MRE, no u/s, no scope, no nothing. And disappointed that he would jump to the biologics so quickly, almost seemed like it was 'one size fits all'. :( But, I have to admit, he answered all my questions re biologics, metho, imuran and I do feel more comfortable with them after speaking with him. And, he did NOT aggressively push them instead of LDN; made it very clear he preferred the biologics but said it was Stephen's body, he would advise and treat according to Stephen's preference. :)

We settled that I will call his last GI and get CDs of the MREs and new GI will have his 'technician' review both CDs to get a better comparison. I am going to get an updated MRE in Buffalo, maybe next week, and he will review that MRE as well. Once these are reviewed, we can speak on the phone and discuss the next step.

Poor Stephen left the apptmt really stressed. He said Crohn's had been the least of his worries but now, with the GI's concerns, Stephen was completely ready to jump into Remicade and not even try LDN. Said if the the GI wasn't confident that LDN would work, why try it? :( I told him I would NOT make the decision for him but was afraid he was making the decision simply based on what the GI had said. Certainly not saying he's not a very reliable source of information/guidance but... I questioned how he could be so certain that biologics were the only solution with no exam or tests???

So, over some pizza and coffee, Stephen calmed down a bit and is happy with the same 'MRE' plan... compare MRE's plus the new one and then determine if we can afford to try LDN.

Sorry it's so long... it helps me keep it straight in my head! :redface: Would love your thoughts... :ghug: Don't even know how I feel... happy Stephen can try LDN, sad that the situation is serious enough to warrant biologics, worried that whatever decision we make will be the wrong one :voodoo:
 
Yikes! That does seem like quite a leap with confusing and old information. I mean really to go from "no treatment" to Biologics in one day with little symptoms and no data?

I agree with you on the getting the CD's and another MRE plan. Maybe then he will have more info to base a decision on.

Was another course of exclusive EN discussed?

Wish I could give you an opinion on LDN but still a little unsure of where I actually sit on that issue myself. It is good he is willing to try though. You can be a trailblazer...be his first success story...obviously, I am all about the glory.
 
:hug: A lot of info to go on.
Very hard decisions to make

On the no tests- I think what the GI saw from May was enough in his eyes to warrant the biologics. Some docs are more "wait and see" type and some don't like to take the risk of leaving him without a portion of his gut or worse.

As far as LDN, We did have that as an option with our GI. He was more than willing to try it if we wanted. But based on the information he told us after speaking with the person doing the study at Penn State we decided not to try LDN. :shifty:

It is hard to "think" biologic when you currently are not seeing the "sick" on the outside even if he is "sick" on the inside. He may have suggested biologics since to be honest he has gone a long time without any meds. EEN is a accepted proven treatment to put crohn's into remission for mild crohn's in children. THe minute you introduced food the gut flora changed and the inflammation cycle was allowed to start all over again ( provided the EEN was strong enough to eliminate it all:rolleyes:). WHile EN is proven to help crohn's patients with nutrition and growth . It has not been proven to act as a maintenance med and keep inflammation under control. they have been studying EEN and IBD for at least 20 years give or take.

They are now just figuring out there are many different sides to IBD and may eventually divide them into classes so that the type of meds can be better tailored ( higher success rate ) to the type of crohn's the patient has.

I would review the MRE for completeness and start the work up ( blood test/chest xray for the remicade) so once the MRE was reviewed then you could make a decision.

Here is the thing to think about.
Scar tissue can not be fixed. If you leave active inflammation sit and continue to inflame then you will get scar tissue. The only way to get rid of it is to remove it. So leaving the inflammation untreated since May means the odds are going up day by day. LDN takes time - at least 3-4 months. Remicade starts to work within a few days to few weeks.

We did put DS on Remicade but we had taken our time and tried all the other options except LDN. At that point time was no longer in our favor.

Not telling you what to do since no decision is easy or right for everyone-
just trying to get you to where the GI may be coming from since I am sure it was a shock to hear.
:heart:
 
Wowzers! That is a lot to process I'm sure. What happened to methotrexate? I thought that was the old GI's next step. I am also surprised that they did not mention azathioprine. Seems like a big jump.

I am having a glass of wine for you... or maybe with you...
 
Well it's good he didn't come off as a biologics salesman and you're having an MRE.:thumleft: I agree with Crohnsinct, the CD's and new MRE will give you more information on where you stand and how much time you do have and if you want any more tests run. It could be that you are in a position to give LDN a try and I think it is great that his GI is willing to prescribe it and monitor him, it seems most GI's aren't as open minded.
:emot-waycool:

I haven't decided about LDN either but you and Stephen are where I hope C and I can be one day.:worthy: When he is of age and his medical decisions are his own if he chooses LDN, I will fully support him and I hope with the use of Remicade, MTX etc now I can get him to a point where he can make that choice with plenty of time to trial it.:cool2:

Everything crossed the MRE comes back good! Oh and the doc is hot to boot...I'm a little depressed about seeing C's GI tomorrow now:yfrown:
 
Thanks guys... my head really is spinning! I've thought LDN was the route to go (or, at least, try) for so long that it's hard to let go of that and I'm not sure that it's NOT still the route to try; on the other hand, I really do feel more comfortable about the remicade after speaking with him and know there are many benefits to the top down approach! OMG!

Crohnsinct - we didn't discuss another course of EEN - not a bad idea... maybe EEN to pull him closer to biochemical remission and then try LDN??? Poor Stephen, I don't think I can suggest that to him just yet... (apptmt was a big let down for him too.)

MLP - Stephen actually made a similar point. While I/we may feel 'omg, GI didn't test Stephen', Stephen said the GI may see 20 just like him in a day so doesn't necessarily need to see 'more' tests to come to this conclusion.

Twiggy - Metho/Imuran vs biologics... I've forgotten 'exactly' what he said but I know liver issues were mentioned as Stephen's enzymes are slightly elevated now. We talked about Stephen going off to university and drinking (really, Stephen's not a drinker, it just seems this is always my concern :redface: but I'm really just trying to be realistic and give Stephen the chance to enjoy all aspects of university, if he chooses, like everyone else), Stephen would not be able to drink with metho. But, he did mention the the cancer risk was not there with Metho. Mentioned Imuran and said, I think?, the liver could also be affected and cancer risk would be similar to Remicade. Seemed to prefer Remicade and said there would be less lifestyle impact (ie university drinking :lol:) on biologics.

Clash - Yes, I was so happy that he is open minded and as supportive as he can be about something he believes is ineffective, ie prescribing, following up, etc. "Biologics salesman" - not sure yet... certainly not 'pushy' but it's a bit difficult for me to wrap my head around the idea remicade is suddenly what Stephen needs urgently!

OMG, just sucks, sucks, sucks! I don't know what to do, I'm afraid to push Stephen in any direction but I'm afraid he doesn't know enough to make a really educated decision. (And I'm supposed to think about my own issues... yeah, like that's anywhere near priority now! BUT I know I can't ignore that either! Ugghh!!!)
 
But I think you hit the nail on the head Tesscorm, "top down approach". C's diagnosing GI said that there were other options but because C's inflammation was so bad he should go straight to Remi, Ped GI is more a true "top down approach" GI. He really feels regardless of moderate to severe best to start with biologic to shut down inflammation before it gets to fistulizing, stricturing...etc. So I think if the GI is top down approach type of doctor it doesn't neccesarily mean Stephen is so severe he has to go straight to remicade that is just the approach the GI normally uses. I hope that makes sense, I'm just saying you may have the time you want and it may not be that Stephen's CD is so severe just that the GI is a firm believer in the "top down approach".

I'm sending hugs and thoughts your way and still have everything crossed that all the tests come back good!!
 
Also wanted to add, my hubby often says the same to me that you mentioned Stephen stating...GI may see 20 like C a day and the tests tell him more than you because he not only knows the ranges but more detailed reasons and processes for the test results so the decision is much clearer to the GI. Doesn't help me much though because like you said it sucks sucks sucks and we are making the decisions for the people we love more than life itself!!
 
Hi Tess,
It has been a crazy night my four year old fell asleep at six and just woke me up to sit and watch TV with her so I am having a chance to catch up here for a minute prior to going back to bed. Anyway I want to say it can't hurt to give the LDN a try. For caitlyn her symptoms decreased with in a week of starting it. With remicade her symptoms never decreased. I don't believe it takes three to four months to start working. I think it starts working right away but just like aza or metho or any of these drugs it is a process to get the inflammation to calm down. I remember our doctor telling us aza could take six months to work. I am very glad he is giving you the option to try the LDN. I have to agree that he sounds like he is pushing the biologics a bit. ( I wonder when he last met with the rep? Lol). Our doctor had also had never had anyone on LDN when he first prescribed it. He kept trying to push to try cimzia. I refused and told him here is what we are going to do. He listened and agreed to let us try it. I do agree with getting a new MRE and some labs though. Seems odd he wouldn't have ordered at least the labs and maybe a fecal calprotectin.
 
Thanks Clash, Kim :)

Now that I've had a few hours to take in this new reality, I need a second apptmt with the GI to answer all my new questions! But, maybe you guys can help me out...

1. Lactoferrin or Fecal Calprotectin - I did ask him about these and he said they are not very reliable for small bowel disease. I've never heard this before... have you? There may be a bit of a negative bias here though... the last GI told me their clinic wasn't authorized to run those tests and, I think, his GI started to say something along that line and then just mentioned the unreliability. Maybe these tests aren't readily authorized by Ontario Health??

2. Biologics' cancer risk - I know these risks are low (really, I am as 'okay' with these risks as anyone can be) but once you have used a biologic is that higher risk with you permanently or only when you are taking the medication? ie, if Stephen takes remicade for a year or two and then stops (for whatever reason), would the cancer risk no longer apply?

3. MRE contrast - when Stephen's had MREs in the past, he's had to 'drink' a contrast (or some drink). He doesn't remember for certain if he also had an IV or injection. When I called the imaging centre in Buffalo last night, they said their contrast was by injection only. Can anyone explain why the difference? I want to make sure that the MRE will be useful. (Otherwise, I"ll look around for another imaging centre.)

Not a question but something I forgot to mention yesterday, Stephen wants a second opinion before he decides... so, will be doing that as well.

Thanks everyone!!! Truly LOVE you guys!!!! I think I would explode if I didn't have all of you to share my worries with and get advice from!!! :Karl:
 
Not sure about the questions, C has contrast through iv and his inflammation did show up but I can't say if that was better or more clear that when you drink the stuff.

Stephen seems so level headed about all that is going on. I try to talk to C about managing his disease and educating himself but it only seems to stick when he is feeling poorly. When all is well symptom wise he truly seems to follow the philosophy outta sight outta mind.

Edit: Chase reminded me he had drink and some type of IV with his.
 
Last edited:
Tess,
Look for another MRE center. They have to drink the barium that is the whole difference between an MRE and an MRI. They watch the gut process the barium and get a better view from the direct contact of the gut with the contrast. This test is new and a lot of places do not know how to do it accurately.
 
Also about the lactoferrin/ fecal calprotectin I heard it is a very accurate test to assess inflammation. I was told by two GIs here in Florida that they use it and it is more accurately then blood work ( crp or sed rate)
 
Accuracy of fecal calprotectin:
http://qjmed.oxfordjournals.org/content/98/6/435.full
read the last paragraph in discussion
http://qjmed.oxfordjournals.org/content/98/6/435.full
Excellent article
Last one:
http://www.sciencedirect.com/science/article/pii/S1590865808000376

I think these articles tell us quite clearly that this test is very good for assessing inflamation in crohns. They also state it is an inexpensive test to do and one article says it can even be as accurate as a biopsy!
Tess,
I would insist that he order it!
 
The fecal caloprotectin is accurate for inflammation but is better at detecting it in the colon.
DustyKat posted a paper on it.

Agree we had to drink barium plus inject iv contrast .
Also your GI can call Jill smith at penn state she will answer any question you may have through the Gi especially about the recent study.
Since it has not been published yet you can make a more informed decision .
 
Wow! That's a lot of information. I am glad the new GI is open to questions and options. That makes a big difference. I hate being constantly faced with tough decisions. I can see the top down approach so the inflammation is gotten under control before it causes damage. But I would love to try the LDN option if the bloodwork and mre show that you have time. Maybe steroid and en for immediate control and ldn. I cant talk though as we have no experience. We are on biologics because GI gave no option. Hugs to you and Stephen.

Stop this merry go round and let us off!
 
You guys are friggin' amazing! :worthy:

I think I have found another imaging centre that uses the barium but will have to call to confirm their procedure.

Haven't had a chance to look at those links (I am actually at work :eek:!!! I've got to try to earn my keep every once in a while! :)) But will get to them today. Still wonder if it's a problem with our Ontario Health... just odd that both GIs at two of Toronto's biggest hospitals made similar comments about the authorization??? Will have to look into that???

(I was kidding before when I said I was setting up a skype account to conference you all in...:lol: but, hmmm...! :rof: Let's see... I'll walk into the GI's office and ask him to please wait while I conference in my GI Dream Team! :))
 
Our gi believe fecal caloprotectin is very good and is still very new.

When Sarah has a colonscopy next year, she what to do both tests within a couple of weeks to make sure they match for Sarah.

This test cost about 40 to 75 dollars in Australia, and is not covered by medicare.
 

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