# Stephen's update and transfer



## Tesscorm

Thought I'd just start a new thread as this update really doesn't relate to my last thread, EN question.

Got a call from Stephen's new GI's office - first available apptmt is Oct. 17!  Ugghh!  Explained about Stephen's recent MRE and the continuing inflammation so he has been put on a cancellation list but, apparently, the GI only has 'clinic' hours on Mondays - this apptmt is already an exception.  ...This is why I've been torn between a transfer to a GI at a large hospital with a large IBD clinic (with lots of resources, research and test facilities, up-to-date knowledge, support staff such as dietitiens, etc. but, maybe, everything EXCEPT time for patient apptmts!) or GI at a private clinic?!?!?  Maybe it's not any easier to get apptmts with them either???

Nurse said I should tell his current GI that Stephen needs to remain under his care until the Fall - I'm certainly glad he's under someone's care and I do like his current GI but, really, I believe his care will be more 'reactive' rather than 'proactive' with his transfer imminent.

Thankfully, Stephen's feeling good so that's not a problem but I am concerned about the inflammation festering for another 5 months!  But, I don't know what to do about it, if there's even much I can do???

I am going to get back to his current nurse (was waiting to see about this apptmt) and ask about some follow-up bloodwork and, even perhaps, another ultrasound before his next apptmt (mid-July) - to see if there's any change in the inflammation.

Nothing earth shattering; just a little venting :ymad:

S mom (???) - I think it was you who'd said your son's transfer would be in a year or so...  thought this might be of interest to you, perhaps give you a heads up on any issues that we come up against.


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## crohnsinct

Been wondering how it was going.  Good to hear that S is feeling good but yikes!  October?!  We have trouble waiting through a weekend for a call back October would drive me insane. 

Sounds like a good plan to keep him with current GI...I hope they agree AND agree to the tests etc.  I agree on the reactive comment but with inflammation a brewin I think reaction is probably warranted. 

Hope it is smooth sailing from here on out. 

Did he have his grad weekend yet? If so, how did it go?  If not, when is it?


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## Johnnysmom

We are moving so we are transferring also.  It has been somewhat difficult so far mostly because we have to switch insurance companies.  We are moving to a medium size children's hospital to a very large one and so far I would say the smaller hospital is easier to deal with.  But it does have great resources.  I am hoping my son doesn't get lost in the transition.  His 6mp levels have still not stabilized.  

Good luck Tess.  I hope Stephen can get an appointment from a cancellation.  

Tiffany


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## Tesscorm

He had his grad weekend this past weekend   And we BOTH survived   He's a good kid - it was close to a 2 hour drive to where they were going (and all teens driving ) so he did let me know when they arrived and let me know he was still alive and well on Saturday! :heart:  

Haven't specifically asked him how any GI issues are...  hate to always be nagging, hovering, etc. but, he's looking good, eating well, etc. so I'm just going with what's right in front of me...  not sure what I can do about the inflammation right now.


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## kimmidwife

Tess,
That is terrible that they are making him wait that long for an appt. Is there anywhere else he can go?


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## crohnsinct

Tesscorm said:


> ...  not sure what I can do about the inflammation right now.


Probably nothing but I think you are on the right track with the request for additional testing during the waiting period.  This way if it raises you can react.  

What a good boy!  

Here's hoping you get some answers in July.


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## Tesscorm

Tiffany,

Are you moving quite a distance?  Will there be any overlap in care between the two GIs?  That was one of the reasons I decided on our new GI - the two hospitals are across the street from one another, most/many patients at our current hospital are transferred to Stephen's new clinic and the two clinics have done some presentations together, etc.  My impression is that they do 'work together' and I hoped that would eliminate the getting 'lost in the shuffle'.  But, must admit, there was already some confusion as to the transfer - it got lost?!?!?  :lol:  Did you mean you are moving to or from a smaller hospital?

And re his 6mp levels - hope you can get that resolved - it's certainly less worrisome to transfer and start fresh when in a 'stable' condition.


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## Tesscorm

Kim,

I'm not sure that there would be much benefit in changing the transfer - I have no personal recommendations for any other GI and this is supposed to be a great facility.  Asking to transfer somewhere else, may leave me in exactly the same situation without the 'great facility'.  Before I start jumping around from one GI to another, I may as well see how this one goes and see if there's any reason to move.  

I think I'll bump up his EN, not drastically, but cut out the 'two nights off' when it's possible, try to up his Krill oil (package says 2-3/day, he currently takes only 1 as he's noticed looser stools when he adds the 2nd pill - but, maybe his body just needs a few days to adjust) and look into some probiotics.  Don't think any of these will be the 'cure' but may help to manage things for a while.

Am also going to speak re LDN AGAIN :lol:, a bit more persistantly now as I didn't realize I was going to have to wait 5 months to transfer!  I'm going to ask his GI what harm can come from trying the LDN???  Even if it does nothing, Stephen's not any worse off as I'm not refusing another treatment to 'try' LDN.  Don't know what else I can do now...


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## DustyKat

Hey Tess,

What I would do is stick with the plan you have now to see the GI across the road. In the interim I would speak with his current GI and explain the situation regarding the appointments and ask if he would continue to treat Stephen until October. Regardless of his approach he will at least have a GI, particularly (heaven forbid) should things worsen,  and it will buy you time to keep seeking opinions and gathering information as to whether going public or private is the best approach. You could ring some private GI's surgeries and explain your son is moving from paediatric to adult care and just make a general enquiry as to how long it will take to get an appointment. 

I know how you feel hun...:hug:...when Sarah packed her bags and left for Sydney she had to find a new GI. She would be attending the medical service on campus and the university has a very large teaching hospital attached to it. I rang the medical service and explained what she had and what she had been through and asked to speak to the doctor she would be assigned to. I then explained to him also and asked (read told him I expected :lol that she be referred onto a gastroenterologist that either specialised or had an interest in Crohn's and one that they would send their own child to. After speaking with another member here in the local support group it turns out they did exactly what I asked, the GI she goes is fab! phew! Nothing like spying on your child through a forum! :shifty: 

Dusty. xxx


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## Johnnysmom

Tess,  We are moving from Grand Rapids Michigan to Cincinnati Ohio.  Currently GR has 3 Pediatric G.I.'s and Cinci has 22.  A few which only handle crohns patients.  Our hospital is wonderful and easy to access.  My sons G.I.has called me probably 7 times since Johnny was diagnosed in October.  I am a little afriad Cincinnati Children's will be too big and might not be as easy to access I am hoping he will be stable before we transfer.  We are at the lab getting 6mp levels as I am typing this.  He had had to have his dose changed every month since starting for various issues.  We have a month and a half before our move so hopefully he will be stable.  They assure me he will be tracked and no one will drop the ball.  His nurse is wonderful and I think his current doctor would see him no matter what.  I would just drive him back to Michigan if I needed to.  I am hoping I won't.


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## Sascot

Glad Stephen's feeling ok in himself!  Good luck with all the transfer confusion.  Hope GI is more likely to maybe try the LDN if you are with him for another 5 months!


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## Farmwife

I hope some thing work will for him, these next five months.
Keep up the good work mom. Your doing a great job.


Farmwife


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## S mom

Thanks for the interesting info about transferring to an adult GI, Tess.  As usual, it appears that it is more diffiuclt than it should be!
We just saw our GI this week for a 3 month check-in appointment and they started the process of transferring to adult services as he just turned 17 a couple of months ago.  They offered to refer to someone in the hospital or a private on closer to home but, like you,Tess, I decided to go with the hospital based one hoping that he would be more specialized to Crohns and be "in the loop" when it came to new research/treatments.  I hope I have made the right decision!  They are making the referral now so he can get an appointment around the time he's 18 next year.  They did reassure me that he would remain with them until after he sees his new GI and return for one more visit after seeing the new guy just to make sure the transition is smooth.  
These waiting lists continue to amaze me!  Back in Feb.  the GI referred him for an MRI - his appointment is in December... yikes!
I just keep my fingers crossed that he continues to feel well during this time so we can make the transition while things are good rather than while urgent decisions about treatment are being made that would be scary.
Tess, you sound awesome at keeping on top of things and advocating for your son.  This next year will be a big one... it's a big one for all kids/parents but seems particularly big for these guys with IBD... changing Dr.'s, graduating, deciding what to do next... moving away possibly, starting university, increasing independence, hoping that they look after themselves.... ahhh... the list goes on.  I just keep taking deep breaths and repeatin my mantra: one day at a time


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## Tesscorm

S mom,

It is a tumultous time for us parents!  Stephen decided to go back to high school for one more year :banana: - he's going to do co-op so that he gets some real 'business-related' work experience - only gets paid in 'school credits', no money, but gets the job without having to find it himself! :lol:  And the schools usually find a fairly decent employer, like a large bank, etc.  He's hoping it may lead to a paid summer job next year and will look good on a resume...  

His decision was certainly a relief for me...  it allows him to move to the new GI without the additional upheaval of starting university, maybe being out of town, etc.  You gotta be grateful for the small blessings!  

But, terrible about the wait for the MRE!!!  It took about 6 months for Stephen's first one!  When Stephen tore a knee ligament, years ago, we took him to Buffalo for the scan!  Got hurt in August and first avail apptmt here was mid November!  We got the MRI booked in two days in Buffalo, I received a copy of the disk at the time and both his doctor and I received the radiologist's(?) report faxed the next day!  He was done his treatment and physio by the time our hospital would have just done the MRI!


Dusty - spying, stalking...   you do what you have to!  :lol:  There's a member here who attends a university in southern Ontario, I was hoping Stephen would've chosen that uni as one of his choices!  I would've loved to have put in him in contact with a slightly older, more experienced Crohnie at his own school!  My own personal spy!  :lol:  But, really, Sarah seems to be so mature and aware of what's good for her - that has to be reassuring for you!   Stephen's so forgetful, so laid back, etc. I've often wondered if it's an EIM in his case! :rof:


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## S mom

Ya, I think that I would have that little guy doing the happy dance if my son decided to do a "victory lap" and take one more year of high school but I have a feeling that's not happening in my case... he's already talking about applying for engineering next year.  I'm just working on keeping him fairly local so he can still have access to the same GI... and, to be honest, so I can try to keep tabs on him to make sure he's healthy (he keeps saying he wants to move to British Columbia for university... nah, I don't think so!).  I don't know how you parents stay sane with teenagers moving off far away!


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## Tesscorm

S mom- you might be surprised   Stephen only decided to do his victory lap about a month ago - after uni applications sent, some offers received, etc. but I think the co-op really appealed to him plus I think he was surprised at how many of his friends have also chosen to wait a year!


So, this transfer is not going as smoothly as I'd hoped!  Current nurse is saying hospital administration has become very strict about not keeping patients once they turn 18 (July) and is going to call the new clinic to ask to move up the date (she's even moving up his next follow-up apptmt because it falls 6 days after his birthday!).  I've asked her what happens if they don't move up date - haven't heard back. 

Also means won't do another ultrasound.  Here I was worrying about the U.S. leaving kids untreated for months!  I hope I don't find that Canada's no different!  But, maybe jumping the gun here..., considering these are two major hospitals in Toronto, would be really sad to see them drop the ball here!

Probably won't hear back until Monday now (nurse isn't in on Fridays...)


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## Crohn's Mom

I wish Gab would have decided to take that "victory lap"! And I believe she feels the same.  She actually said to me a few days after she came home for the summer that she wished she would have listened to me and her doctors when we tried to tell her it was ok to wait a bit.  This last year, although she enjoyed most of it don't get me wrong, was extremely stressful on her.  So, HOORAY for Stephen in his great decision ! :thumright::thumright:

I sure hope things get straightened out quickly with that transition !! Best of  luck ! :ybiggrin:


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## DustyKat

I don't understand all this "victory lap" and "taking another year of high school"! I'm so confused! :lol:

I tell ya, it is so very reassuring that Sarah stepped up to the plate and took control and I do hear you about Stephen. I wondered if Matt would ever get through life without a personal assistant! but I have seen changes in him since he started uni full time. He is actually prioritising and sacrificing things, like his sport, that I wouldn't have dream't he would do in a million years! There is still hope Tess! :ybiggrin: 

Dusty. xxx


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## Tesscorm

Dusty - great idea - personal assistant for Stephen!  :lol:  

We are allowed to return to Grade 12 (last year of high school) for a second run (victory lap ) (don't know if this is offered across all of Canada and the US).  I'm not sure what the school board's intentions were when they implemented this but, for Stephen, it will allow him to 1) take a co-op course - school places him in a job in his area of interest and he gains the experience and two school credits; 2) repeating one of his math courses to obtain a higher mark and 3) take a course he'd wanted but had had to forego due to schedule restrictions this current year.

It also allows students, who change post secondary school choices/careers, to take courses/credits they may be missing.

Stephen still has his senior prom and grad this year but just returns to the same school in September.  His plan is to return for only the first semester, Sept - January '13 and then work from February to July (hoping the co-op leads to this job) and start univ Sept '13.

It's a nice choice to have as it gives kids a bit more time to really consider what they'd like to do post secondary school and some just aren't ready to go away and need the extra year, etc.

The school counselor even suggested using the option as an opportunity to explore interests you won't necessarily have time to explore when 'real life' hits, ie photography, drama, etc. (Not sure the school board supports this view though :lol.

But, I've heard that this is the last year that this choice will be offered at no cost - apparently, beginning Sept. 2014, only essential-type courses will be offered, they will not be in a 'high school' setting and there will be a cost to students.


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## Crohn's Mom

It's not offered here Tess   Our idea of Gab taking a "victory lap" would have been for her to stay home, take a few classes at the local state college (so she could keep her scholarships) and relax and heal and explore


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## Farmwife

In Michigan we have work release. I did it as a Senior. I was able to get to of school a few hours early and go to work. I got credits for it.
However, I had to find the job. 
I also had to meet all the requirements as a Senior.
That's sound neat what you guys have.
Farmwife


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## crohnsinct

Last year?  Darn!  Just when I was getting set to move:smile:


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## Tesscorm

Crohnsinct, this program/option was implemented a few years ago.  Up until 4 or 5 years ago, Ontario had a grade "13" (only province to do so), when they cancelled Grade 13, this offered this 'option' to return to grade 12.  But, I have a feeling that the program is becoming too costly - perhaps too many students???  Especially if there are some that have thought the same as that one counselor - taking more 'interest' courses because they had the option to make up the necessary courses during a victory lap.

But, in any case, given the current economic environment, I thought the experience gained through co-op would be valuable, especially as the school already has the connections in place to offer the jobs (unlike Farmwife, we don't have to find the job).  Students do have to meet all the regular requirements whether they be secondary school requirements, college, university, etc.


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## crohnsinct

Well gee...if too many are enrolling in the option maybe that is telling them something...it is needed or wanted.  

I personally think we rush our children too much.  Hurry up and read by 5...hurry up and graduate at 17/18 and figure out what you want to do with the rest of your life and get it right cuz you have to graduate college in 4 years.  

There is a great movie documentary called "The Race to Nowhere". 

My oldest just completed high school and that whole college search year was grueling.  So competitive and they herd all the kids off to college like a one size fits all.  If any kid says they are going military, or community college or heaven's forbid tech school the parents are pitied as having failed their kids.  

Don't get me wriong I am not advocating a society of lazy bums but I think allowing exploration will lead to more fulfilled, mature and flexible thinkers in the end. 

Good for S for being mature and open minded about his options.  I hope it proves a great move for him!  

But oh wait this is a Crohns forum right?


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## Tesscorm

I agree, I had encouraged my daughter to do a 'victory lap' but she was anxious and excited to move on and had no doubts as to her courses, etc.   Each child is different 

I don't know all the ins and outs of this 'victory lap' program but I'm guesing that when grade 13 was cancelled, to appease parents, etc. they implemented this option to repeat grade 12.  But, you're right...  many kids are pushed along when they aren't ready, etc. so perhaps parents are encouraging more to 'wait' a year.  Plus, with today's economy, there's no big rush to get into that job market 

I know each student needs the principal's approval to return but I don't know what conditions must be met???  I've never met anyone who _wasn't _able to return.  I think apprx. 6 or 7 of Stephen's friends are returning...


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## DustyKat

Thanks for the explanation Tess.  

We don't have a program like that as such. A lot of kids take a gap year before starting uni and you can re-sit your Higher School Certificate to gain better marks if that is what you want to do, I don't think there is a cost to re enrol at a public school?? I don't know anyone that has done it immediately after finishing Year 12 though, only older people going back to school to gain their Higher School Certificate. 

We also have TAFE colleges here that offer courses for all ages but many kids do courses concurrently with their school program, approved by the Board of Studies, and they can gain certificate qualifications in things like hospitality, tourism etc by the time they leave school. 

Dusty.


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## willsmom

Tesscorm thanks for sharing your experience on transitioning to adult care - while the transition is a few years away for us, I appreciate learning from your experience and am likely to be dealing with the same hospitals. 

To add to your interesting side discussion on the victory lap, if I recall, it arose in part because in the year the govt killed grade 13 this caused excessive competition for entry to post-secondary school (both university and college) due to having a fixed number of spots available and twice the applicants...the tradition has lived on for those wanting to boost marks or get experience get into post secondary.


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## crohnsinct

Don't be jealous now girls but if O goes to college her ped GI will keep her as a patient until she graduates and falls off our insurance.  Guess it doesn't really matter though...just delays the inevitable. It is kinda weird though in the docs infusion center when these big strapping young men with beards walk in for their treatment.   I was wondering about the college search and asked one of the girls how she went about it.  She said our doc finds a GI near the school, hospital and infusion center...told you he is a control freak..but I rather like our control freak! 

That explanation of how the victory lap makes total sense...logistics..


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## Tesscorm

Wills mom,

Yes, you're right about that issue re univ space the year grade 13 was eliminated.  I'd forgotten about that...  

Don't really have any good news re Stephen's transfer...  the hospital (current GI) can NOT keep him once he turns 18 (to the day!)  His next apptmt had been scheduled for 6 days after his birthday and they've had to move it up to the day before!  And, a friend whose daughter was also in the hospital last summer due to Crohns told me there was another girl in the hospital, quite sick and had a resection and was transferred immediately after (days, a week???) because she had to be moved before her 18th birthday.  So, if this poor girl had to be transferred under those conditions, I highly doubt an exception can be made for Stephen.

Stephen's nurse was going to see if she could have the apptmt at the new GI moved up but haven't heard back.  I think they possibly dropped the ball a bit here...  I would think that, if so many of their patients are transferred to the same clinic, they would be more aware of wait times for apptmts with the new GI???   In which case, they should have started the transfer sooner... (i.e., S mom said her son's transfer is still a year out and they have already started the process).  

I don't know what I can do?!?   Another friend, who works for a specialist at another hospital (not GI, unfortunately!) said that if an issue came up before October, I should consider the 'upcoming' GI as Stephen's current GI and take Stephen to that hospital's emergency for care.  But, my concern isn't so much that an 'emergency' will happen...  it's that the inflammation has been there since the fall (actually earlier as he was diagnosed in May), will likely continue to be there until Oct and then, before the new GI decides on treatment, we will have to wait for further testing which, if that includes another MRE, could takes months AGAIN!  But, like I said...  I really am at a loss as to what to do???  Hopefully, his current nurse can get the apptmt moved up or Stephen will get an earlier apptmt thru a cancellation.

I'll speak with his current GI at his next/last apptmt (July 4) and see what he says...


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## Catherine

Tess

Your transfer issues make me feel lucky.  As Sarah was already 16 when got our referral letter, she when straight to an adult gi.


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## Tesscorm

Unfortunately, sometimes you have to learn on the fly...  If I'd ever thought this was an issue, I would have asked to start the transfer earlier; I thought they were covered by this hospital throughout their '18th year' so,in the back of my mind, I thought we had lots of time... :mad2:


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## DustyKat

I'm so sorry to hear that the system is so inflexible Tess.  :voodoo:

Sarah's paediatrician will happily see his patients up to 25 and when it came to seeing a GI I decided that being 14 she might as well go straight to an adult GI. He had no issue with accepting her. 

Dusty. xxx


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## Tesscorm

I don't believe it is the 'entire' system.  I know that there are pediatricians who will continue seeing their patients until their early 20s but, I think this is specific to this hospital.  I'm guessing there are a number of factors - it is a 'childrens' hospital and the limited available space at hospitals is often in the headlines here, leading to pressures to free up space to treat 'children' as is their mandate, perhaps our provincial healthcare funding prohibits the hospital from treating 18+ patients???


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## crohnsinct

Oh Tess I am so sorry for all this frustration and the worry over possible untreated inflammation.  I am hoping for a cancellation or maybe when you see his ped GI he will get on the horn to the new office and free up some time for him. 

Finger and toes crossed!


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## willsmom

Tess, I feel for you...I've not had the best experience where referrals to other clinics are concerned but I did find it helped to stay on top of the referring nurse, do bring it up with his GI at the next appointment and maybe even go so far as to get your GP involved to expedite and ensure that Stephen is not left in the lurch without the proper care.


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## Sascot

After reading your posts about the stress of transferring to adult GI I thought I would ask about what happens here.  Apparently they move over at age 16 which I thought was quite young, and for about a year before that they start doing a joint clinic with the paed GI and the adult GI.  The nurse says they start taking the kids in by themselves at that point so they know what to expect - however I was not happy with that.  Even as an adult I like to have someone else there to pick up things I maybe missed.  Oh well, hope you get everything sorted soon.


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## Tesscorm

Oh...  just to complicate things MORE...  Because, WTH, what's life without complications! :duh:

We're trying to find Stephen a new GP :runaway:  His current one only works part time now and trying to get in to see her sometimes takes a couple of weeks!:ybatty:  But, I've been waiting to see where Stephen was going to go to university (out of town, in the city, etc.) - it's hard enough trying to get a new doctor here ONCE, I didn't want to try to do it twice!  Now that he's decided he's not going anywhere, I'm hoping a 'doctor' friend can get him moved to his own son's doctor - just waiting to hear back...  

So, isn't life special...  Stephen may not have a GI and, at the same time, doesn't even have a readily available GP! 

My fallback is that my own GP is amazing and, if I absolutely have to, I will ask her to be Stephen's GP - haven't so far only because she is downtown (near my work), would be very inconvenient as Stephen's never downtown if she was his permanent GP (for everyday aches/pains).  I'm trying to get someone closer to home for Stephen.

So, at this point...  I'm just going day by day:ylol2:...  As much as I am a control freak, it seems I have NOTHING in my control at this point! :ybatty:  Talk about stress! :rof:

Thank god Stephen's, at least, feeling well!!!


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## DustyKat

Yes Tess! Thank God! 

	
	
		
		
	


	





Hoping more than anything that Stephen stays well and the doctor dance isn't toooooooo stressful! 

Good luck hun...:hug:

Dusty. xxx


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## S mom

Yes, thank heavens he's cruising along feeling ok!!  It does give you a little space to take a breath and try to work within the system - as frustrating as that can be.
I laughed out loud at the "control freak" comment... I often think that when you have kids you become part of some master plan to make you live day to day and relinquish control... just when you think you have it all figured out they throw a monkey wrench into the works!
Hey, Tess, did you know that as of Sept '13, the current budget does not allow a "victory lap"?  See... it's my new mantra... one day at a time :lol2:


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## Tesscorm

OMG, please don't tell me that he will now have a problem with school next year!  The deadlines to accept university offers has passed!!!  OMG, I really don't think I could handle another wrench in our lives now!  I just put a call in to his school counsellor...


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## S mom

No, he won't have a problem for next year - his year is the last one to be allowed to do it (Sept 12)... my son will be caught for the year after, however.


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## Tesscorm

OMG :lol: silly me, you did say Sept. '13...  I just had a total panic attack!  I'm obviously teetering a wee bit too close to the edge!  :rof:  

But, I'm sorry your son won't have the opportunity.  I had heard that the program would be discontinued after this year but, perhaps, not in its 'entirety'...  my understanding is that the school board was still going to offer the essential courses (i.e the maths, sciences, english, etc. - no drama, no photography ), that the classes will be held in a separate location (perhaps in an office building or the school board's offices) and that there would be some charge....   Since I have a call in to the counselor already :blush:, I will ask him about plans for Sept. 13 and let you know


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## Tesscorm

S mom, just spoke with counselor but he had no info regarding the victory lap for Sept 2013 - only knew that they are to continue accepting students for this coming Sept but hadn't heard of any news, neither continuation nor cancellation of the program for Sept. 2013.  But, thanks for your post!  By calling, we determined that Stephen had not submitted the form specifying his area of interest for co-op! :facepalm:  

(See, Dusty, Stephen DOES have a personal assistant - ME! :yrolleyes


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## kimmidwife

Hi Tess,
I just wanted to say I am sorry you are stressed out. I know how it goes. Life is never easy! Hopefully you will get it all figured out quickly. Stephen is lucky to have such a great Mom!


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## Tesscorm

Thanks Kim,

It does seem that when it rains, it pours!   But, I don't think I will have a problem transferring him to the new GP (hopefully, not speaking too soon!  Didn't think the GI transfer was going to be a problem either! :lol - and that will be a relief, knowing that he will have a GP close by and where I don't have to wait two weeks for an apptmt. 

We all just do what we gotta do, right? :ghug:


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## Sascot

Gee, it does really seem like one thing after another!  Think we could give some people a run for their money on multi-tasking.  Good luck with well - everything!:smile:


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## Tesscorm

:lol:  Gosh, don't we all know about multi-tasking?!?!? :runaway:

Apptmt with new GP set for next Thurs!  Just a 'meet and greet' apptmt to get Stephen's background, info, etc.  :banana:

And, meant to respond to your earlier post...  that's great that the ped and adult GI care overlap for a year!  I'm jealous!  

And....   sending him for apptmts on his own???  Oh, sure, like I would let that happen!  :eek2:  But, I have had to deal with this with my daughter, to a degree...  as she's just turned 19 - she must be the one to call and request any test results, schedule apptmts, etc. - wow, let's make our lives even more complicated...  instead of just getting thru a nurse to get to the doctor, now I've got a teenager ahead of the nurse!:ybatty: :lol: BUT, what I've done for years with both kids at doctor's apptmts is I go in, discuss results/issues, ask my questions, etc. and then leave the office so Stephen or Emily can have privacy to discuss what they don't want me to know   I've never had a problem doing it this way...


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## Mom2oneboy

I'm just now catching up on you and Stephen and wow, who knew it would be so complicated?  After so many years of being with the pedi GI and developing a trusting relationship, I can't imagine having to start all over with that.  Ugh!  Just one more reason I don't want my baby to grow up 

You do such an amazing job of staying on top of all that.  Stephen is so lucky to have you as his mother!!


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## crohnsinct

Kids at docs on their own...YIKES!  You are making me laugh and cry.  My oldest is turning 18 in July...didn't even think of that.  Yeah sure she is examined without me but I always get first and last word.  Soon I am not "entitled" to anything...need to know basis.  ugh! 

I am so glad you are going to have a medical professional in your corner...well besides us here...this way if anything transpires with S you can get on it right away.  Crossing my fingers that the next 5 months are uneventful!


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## Tesscorm

OMG, I cannot even imagine the panic I would be in knowing Stephen will have no GI for a few months if I didn't have all of you to help me along!  :ghug:  

I smiled at farmwife's comment...   _"We decided not to tell the Doc what we thought it could be. We were just curious if he would put that together also."_  :tongue:  I will never forget when the 'on call' GI asked me 'if I was in a related field' after I questioned him on LDN, calprotectin, lectoferrin, etc. :rof:  What I know, I know from all of you! :hug:


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## Catherine

My 16 year old had to sign a letter to allow me access to her records with GP.
That a story in itself.

Her GI doesnot required one as I go to all the appointments.  Sarah doesnot ask any questions.


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## S mom

Our GI clinic told us at the last appointment that my son would be expected come in on his own next time in preparation for his transfer to adult services and then we could come in at the end of the appointment to ask questions etc... I can't imagine that he would ask any questions on his own either!  
I've been trying really hard to slowly let go, however, knowing that he will eventually have to deal with this on his own.  He now does all his own MTX injections and lets me know when we need to renew the prescription or by more folic acid.  He books his own bloodwork and goes to these on his own... but it still seems to be a big leap to actually attending Dr's appointments totally on his own... I think I will be "hoverin"g in that area for a while longer!!  so many "huge" decisions - I would want another set of ears if it were me and I'm supposedly an adult!


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## Tesscorm

I agree that GI apptmts need a second set of 'ears'.  Adult or not, it helps to have someone else to remember questions and the answers.  I may be a bit guilty of micro-managing Stephen re his Crohns.  Partly concern that if not manage properly, the condition could worsen (ie researching, etc.) and, partly, because I'm sorry that he must have this responsibility - I can't take the disease from him but I can, at least, cover the 'workload' (prescriptions, making formula, etc.).

but, I think that when the time comes for university/going away, they will step up to the plate (maybe just a few stumbles ).  I think the example we set by being diligent about apptmts, prescriptions, etc. will rub off on them.  I've been with Stephen at restaurants where he's asked about 'seeds/nuts' and changed his order because of it, he has said (without my prompting) that he's going to eat more of the foods that are known to be anti-inflammatory (although, more often than not, his 'pickiness' seems to win this struggle! ).  And I take comfort in hearing about Dusty's and Crohn's Mom's kids who have gone off to university and taken responsibility for their illness (and lots of other 'young' members here...).

Uggh, hard enough to let them grow up but having an illness just makes it harder.


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## crohnsinct

Tesscorm said:


> I can't take the disease from him but I can, at least, cover the 'workload' (prescriptions, making formula, etc.).


I love this!  How beautiful.  The gift of a loving mother.  You have done such a great job, I am willing to bet he welcomes your input.


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## DustyKat

I know when I go to appointments with Matt he will sit back and let me do all the talking. Even when the doctor speaks directly to him he will turn and look at me and expect me to answer like I am sort of medium that is going to channel him! When he had his pre op appointments he only asked one question the whole day! 

Having said all that I do know deep down that if it were left up to him he would take over, it's just easier if Mum peels the grapes for now. :lol: You are setting an example Tess, you are doing what you do everyday without realising it, teaching and preparing him for life outside the nest. Well done! 

Dusty. xxx


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## Tesscorm

DustyKat said:


> Even when the doctor speaks directly to him he will turn and look at me and expect me to answer like I am sort of medium that is going to channel him!


Too funny!!!  :rof:   I can see it...  (we must be channelling....:lol

Doctor:  How are you feeling?

_Any kid_, looking at mom:  I'm not sure...   Mom?

I've been there!  :lol:


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## crohnsinct

Some sort of medium...LMAO!  Good then it isn't abnormal that O talks up a storm in the hour car ride to the doc and becomes mute as we cross the threshold!  Although I will say she rather liked the derm yesterday...tall, dark, handsome, young fellow...She told him to call her Livy?! She sure talked to him!  O.K. it was about skin and not her butt and poo but still....

Oh and IF they do say anything it is usually"fine"


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## Tesscorm

:lol:  I guess they're all the same...!  :heart:

Give her a couple more years...  she'll be happy to be talking about her 'booty' to some tall, dark and handsome doctor!


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## crohnsinct

LMAO:rof:


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## crohnsinct

Hey!  Stephen has his appointment with the new GP today...right?  Good luck!  Let us know how it goes...did you get to go in?:shifty:


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## jmckinley

Tiffany,

I hope the transition to Cincinnatti Children's goes smoothly. I saw that they are #4 on the list of best hospitals for GI. Do you know who your Dr. will be yet? R's first Dr. moved to Cincinnatti Children's a year and a half ago. He is in the IBD clinic there.


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## Tesscorm

Apptmt went really well!!!  YAY!!!!  I really liked the dr!  Apptmt wasn't meant to be more than a 'meet and greet' and I thot he was great and so did Stephen! We went thru Stephen's crohns history and he asked lots of questions, asked if we cud arrange for all past and future results to be sent to him, etc. (Mom bonded here :blush He has a son, same age as Stephen, who also plays hockey so they got into 'hockey talk' and I think Stephen 'bonded'. :lol:  anyway, a big relief knowing that Stephen has a good GP now!  

(Am away for a couple of days . So may not be around much for a few days. :ghug


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## Mom2oneboy

Yay!!!  Sounds great and I know that has to be a huge relief for you!!


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## DustyKat

Woohoo! And all that bonding! Oh happy days! ika:ika:ika:

:mademyday:
Dusty. xxx


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## crohnsinct

YAY!  A medical professional in your corner!  Enjoy the next few days...we will miss you!


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## Johnnysmom

Jmckinly,  We are seeing Dr. Saeed.  He apparently only treats crohns patients.  Our G.I. in grand rapids recommended him.  We will meet him in August and I am kind of nervous because I love our current doctor.  Did you have a good experience with your Dr?


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## my little penguin

woo hoo for a good new doc


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## izzi'smom

so happy to hear it went well...yay for you!!!


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## Tesscorm

Thanks everyone!    Really do feel like a weight has been lifted!  Woohoo! :lol:  

One down, one to go...  OMG, could you imagine if we're just as happy with his new GI?!?! :banana:   I'd post my own picture of me doing the happy dance! :lol:


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## Sascot

That's great news!!  Truly hope he gets a good GI as well - I look forward to seeing your own happy dance :lol:


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## Tesscorm

So... Stephen's last apptmt with his current GI...

GIs thoughts are that Stephen's crohns is still active (or becoming more active) as his inflammation markers have been creeping upwards (although not steadily - sometimes they drop...) and the last MRE continued to show inflammation.  

(The actual MRE report says "extensive inflammatory changes in the distal 20-30 cm of ileal loops in the form of significant mural thickening, mucosal irregularity/ulceration, stranding of surrounding fat plans and vascular engorgement.  Mild luminal narrowing of the distal ileum.  No significant changes since Nov. 2011"  - perhaps this _sounds _worse than it is but certainly does not seem to fit with the clinic nurse's comment that the results were 'mild inflammation at the TI'?!?    In any case, it is what it is...  perhaps it 'sounds' bad???  Where, oh where is my :sun

So, going forward...  current GI will, in fact, continue to keep Stephen as an out-patient for 'maintenance' until October (apptmt with new GI).  He would prefer to not begin a new treatment as Stephen will be transferring so soon but, if results from today's tests showing worsening levels, he is recommending methotrexate.  If results are the same or better, we continue with EN for now.  If situation deteriorates significantly, he will either get apptmt with new GI moved up or will transfer Stephen to the new hospital through the ER department (I suppose, 'fast tracking').

He says Stephen is in 'clinical remission' but not (is the term???) biochemical remission.  Said Stephen responded very well to EN, however, it is apparent that EN is not 'healing', just keeping things 'okay'...

Will NOT prescribe LDN! :thumbdown:  He did say the IBD team is looking at LDN, that it is currently a hot topic but they are not ready to prescribe yet. :voodoo:  No matter what I said, he was adamant.  Again, suggested that the adult GI/team may be further ahead in their acceptance of LDN as there are more 'adult' studies to refer to...

So, we wait for the results...  and I pray we can hold off on the metho until I can try to convince new GI for LDN.


Tomorrow's update...  Emily's rheumi apptmt...  

(and stay tuned...  did I mention she is also seeing a psychologist next week because she feels she needs help 'focusing' at school???  Hmmm...  hard to stay focused in accounting class:ywow:  _Try turning off the blackberry!_:ybatty:  A parent needs to attend...  _(who needs to work? :rof _ 

Stephen's GI asked what his new GP's name was and I went totally blank...  he looked at me like I was some ditzy mother! :lol:  Sure, I'd like to see him try to keep track of a current GI, new GI, rheumi, psychologist, old GP, new GP!


----------



## Catherine

Glad to it's not only me who forget the specialist names.  I have the same problem with subject teacher names, last parent teacher night I had 18 5 minutes interviews.


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## Twiggy930

Tesscorm said:


> Stephen's GI asked what his new GP's name was and I went totally blank...  he looked at me like I was some ditzy mother! :lol:


:ylol2:  I had a similar experience at our appointment with Rheumatology the other week.  I totally blanked out on the name for Pentasa.  I knew it was related to sulfasalazine but I could not for the life of me come up with the name PENTASA!!!  Doc just looked at me like I was some kind of idiot who couldn't name all of her son's past meds.  :ywow:


----------



## Sascot

Think you're going to have to start a little filing system to bring with you - keep the names of all the specialists straight :ybiggrin:
Wonder why docs are so reluctant to try LDN, surely anything with fewer side effects is worth a shot??  Good luck with the Methotrexate if he starts.
Have to say that is the first time I've ever heard a kid say they want to "focus at school" :lol2:


----------



## crohnsinct

Well all in all sounds good...you get to keep old GI in your corner until new, you have a new GP both of you like and a plan should things get worse. 

I also don't get the reluctance to try LDN...if he is in clinical remission and "o,k," right now why not give it a shot?  I mean I can understand a kid in horrible condition and them not wanting to waste time "trying" something and wanting to get it under control fast but if you aren't doing anything else right now why not?  

Oh yeah!  Have totally blanked out on specialists and medication names before..three kids, two dogs, me, hubby, hard to keep everyone's facts straight.  Hell, I forget to ask at the end of appointments when I should make my follow up appointment for and end up chasing down a date.:facepalm:  

Good luck at the rheumi today.  I can't remember but is it you who has a child with dyslexia?  If so, is it Emily? My youngest has severe memory dyslexia and the neuro psychologist tells us that at some point trouble concentrating pops up as a result of the frustration with the dyslexia.  So far so good for us but she is only 8.  

And what teenager can stay focused in accounting class anyway :boring:


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## Tesscorm

So, all good at rheumi!  Her ANA was normal, all tests normal, even her iron levels were good!!!  WHEW!!  Her pinky still hurts periodically (rheumi thinks from a past injury) but, just a periodically sore pinky I can, with relief, say 'live with it'! :lol:

Dyslexia - no.  Lack of focus?  let's see... math is her weakest area but she chose to take Finance, she's a very 'sociable', chatty person, constant  Blackberry pinging, upcoming 'weekend' plans, etc., etc....  combine them all and, _really_, you have no focus in accounting or statistics!?! :facepalm:  But, seriously, she is easily distracted and gets very stressed for tests (sweating, itching, headaches, etc.), so, as she recognizes the need for some help in dealing with this, I think it's great that she's looked for the help. 

Crohnsinct - totally agree re the LDN.  So frustrating!!!  And I did say exactly as you mentioned, that THIS is a good time to try!  I told him, we're not in a situation where I'm refusing treatment to try something 'different'!!!  Also, put him on LDN now during this 'wait' period so that when we get to the new GI, we'll know if the LDN is working or not...  Ugghhh!!!  I am a bit disheartened to put Stephen on metho, like everyone else when facing this :ghug:, so... if that is what we are facing , perhaps I will get a second opinion now (even before new GI)...  forgot to ask yesterday but, for all the same reasons as LDN, why not try Pentasa???  Why jump straight to metho?

Also, picked up his medical records (seriously, like 200 pages!!!  WTH!?!) and am really, really confused...  Only had a chance to skim through them BUT, I think, his scopes (May 2011) showed only one granuloma in his stomach???  His stomach has never even been mentioned???  Also, inflammation in his entire colon, especially in his descending colon (at diagnosis, not now)...  So confused!!!  Why would EN have been offered at that time, based on scopes showing inflammation in the colon, with only assumptions of small bowel involvement based on ultrasound images (first MRE wasn't until November).  I'm glad of the EN but, just confusing as I thought EN isn't generally thought to treat crohns in the colon as successfully???  I've got to go through all of it again with more time...  But, huge mistake not getting all the test results in hand immediately so that I could have asked these questions at the time!  Won't make the same mistake going forward...

But, one step at a time...


----------



## crohnsinct

So glad the rheumy appointment went well.  

Oh boy Tesscorm you are really making me feel woefully inadequate as an IBD mom.  As you know we get info on a need to know basis.  We started this journey before I found you guys so was fine getting the bits and drabs from doc but now I want the whole enchilada and don't know how to change my approach.  I have so many questions...not that it will change things at all but he said Crohns based on colonoscopy minutes after he walked out of procedure...do biopsy results confirm that?  Then at a later date said rectal and stomach inflammation was present...does that mean simple inflammation or was there disease?  He said no small intestine involvement but he only got a small peak with colonoscopy and endoscopy so could there be?  I just have this nagging question as to whether or not it could be colitis as that would change how we proceed in the future.  

Oh well, doesn't matter she is fine and responded to Remi and EN (with almost all disease being in the colon!)...maybe I will hit him with my new personality in August...maybe he will forget the quiet mild mannered city girl.


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## Tesscorm

crohnsinct said:


> Oh boy Tesscorm you are really making me feel woefully inadequate as an IBD mom.


OMG, are you kidding!?  I constantly feel like I'm 10 steps BEHIND...  my 'crohns' life feels like...  'shoulda, coulda, ...DIDN'T'   

I feel exactly the same as you...  

They did scope and came out and said 'confirmed crohns'.  Uhh... okay??
Remember her saying 'certain its not UC, it's crohns'.  Uhh...  okay??   
He can eat what he wants today, tomorrow and for the next six weeks it's no food!  Uhh... okay???
We don't know how it progresses in the future.  Uhh... okay???
We don't know for certain if EN will work.   Uhh...  okay???

What they said:  Granulomas, terminal ileum, CRP, colon, ulcerations, strictures, stranding, sed rate, inflammatory markers...  

What I heard: aljdlkf joicv klafjei xciovj alkerj elijzic vjaem. xjcio pierje.  Any questions?   :lol:

But, I am definitely going to say to the new GI that I want to know all information, not on a 'need to know basis'.  New GI is my opportunity to start fresh    But, to be fair, I (we) knew so little at diagnosis, if they had started giving too much detail, it would have been even more overwhelming.  Realistically, I doubt I would have been able to add much of value to the decisions being made.  Thankfully, they took control when needed.  Now that we're all more aware, more knowledgeable, I (we) can and should play a bigger role in the decisions.


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## crohnsinct

What I heard...LMAO


			
				Tesscorm;469984  But said:
			
		

> Thanks I needed that.  Makes sense.  Just hope the doc is ready for me in August.  Haha I wonder if they sit around taking bets on how long it will take each of us to come out of our new dx fog...as I have said to someone else also, I also wonder if they take bets on how long it will take each of us to come around and accept the drugs being recommended...I can see it now in the break room..throwing down the challenge,  doc A "she didn't go for it" doc B "let me try, I'll break her"


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## Tesscorm

LMAO...  every job has it's own humour!  You may not be far off! 

actually, "dx fog" is a really good description!   I guess, to a point, when we accept the meds, is when we actually do come out of the fog.     I guess I'm just not there yet.   Sad, but when I was reading the biopsy report last night and reading 'no granulomas found' there was still that tiny voice saying "maybe they made a mistake!!"  So, in my case, I guess that fog is still swirling around (and, when it's not, then I'm blinded by my bright sunny world!  :lol :ybatty:


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## Catherine

I suppose my dream world end this week too.  You know the first treatment they tried worked so well.  Anemia gone after only 3 months and now it back along with the doubts


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## my little penguin

crohninst- 
Count me in the - I had no clue at time of dx club.
YOu don't need to ask the doc for the results-
Just go to medical records -fillout a form and instantly you have all the paper work.
BE prepared some charge a fee per page for personal use but not for continuing care (i.e. another opinion)


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## crohnsinct

Tesscorm said:


> New GI is my opportunity to start fresh


Haha and btw that is what we tell out third child...we made all our mistakes with the other two and she is our chance to do it right 

Haha we spaced our kids far apart...G is 9 years older and O is 4 years older than her and she gets frustrated they get to do everything so much sooner than her..we also tell her not to worry she is so lucky because when O goes to college and she starts high school we will have no other children and we can turn all our attention and focus on her and everything she is doing :biggrin:


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## DustyKat

Woohoo! Fab news about your girl Tess!! I am so deliriously happy for you!!! :ybiggrin::ybiggrin::ybiggrin::ybiggrin::ybiggrin: I hope the psychologist is able to help. Keep us posted with how she getting on! 

Good lord, if I didn't have to work I wouldn't have so much catching up to do! :lol: It's good to hear that there are solid plans in place for the hand over to the new GI. Hmmm, well it does very much sound like Stephen is in a holding pattern at the moment with his disease. I hope the EN is able to keep things contained until the change over. EN can be just as useful with large bowel CD, I think the jury is still out when it comes to UC though. 

As to the 5ASA's...I can see two reasons why they might be doubtful about it. Firstly they may feel the disease present is beyond what the 5ASA's would be able to treat and in going down that track there is a greater risk of the disease progressing. Secondly, I know there are those here that have had success with the 5ASA's and mild small bowel disease but there is some doubt about just how effective they are with small bowel disease and to be honest Stephen's disease doesn't sound mild. I know they are listed as being for mild to moderate disease but in the small bowel I feel if they were going to work it would likely be against mild disease only. Of course that is only opinion! 

Now what did I know about Crohn's when Sarah was diagnosed? So bloody much that you could fit on the back of a postage stamp! Sheesh that's probably being overly generous, let's downgrade that to the head of a pin! :lol: 

Dusty. xxx


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## Tesscorm

Thanks Dusty!

I'm with you re the inconvenience of work interfering with my time here!!!  It's been so hectic for me lately, I've only been managing to jump in and out!! :ymad:

I'm sure you're correct re the Pentasa, etc.  Stephen's GI has said from the beginning, he didn't have a lot of faith in the 5-asa's but, I suppose, in one of my 'coulda' moments - perhaps we could've tried them at the very beginning together with the EN???  Oh well, perhaps too late or perhaps never an appropriate treatment for Stephen??...

!!Huge!! relief that his GI will continue to maintain him shud the need arise between and October - while Stephen's well now, that was a big worry for me, especially being told of the inflammation two weeks before they were signing him off!!!   God, what a way to panic a parent! :lol:

And, forgot to mention, there was another good sign at his apptmt - since April, he grew 1/2 inch and gained approx. 5+ lbs, heaviest he's ever been!  He's usually between 156-160lbs, now 164!  (I'm certain due to his hockey ending in April...)  At least I know, even with the inflammation, he is still absorbing nutrients, etc.


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## S mom

That's fantastic to hear. Tess... both that your daughter's "pinky issue" is not a big deal and also that Stephen will have some continuity of care while waiting to get in to the adult GI.  Good luck now with psych  
I'm likely part of that "lost at the time of dx club", I likely missed a good chunk of what the GI told us.  I do remember hearing that his crohns was severe and was all throughout his colon and rectum as well as a couple feet of his ileum with some fistulas around his TI (thankfully the GI drew me a picture - that was helpful).  We were still offered exclusive EN despite the involvement of the colon - and like Dusty said, I think there have been some more recent studies suggesting that EN may work for colon involvement too for CD (not UC).  It certainly did for us.
Also wonderful to hear about the weight/height gain.  Our clinic said that growth in height (more so that weight even) was a really important indicator of how nutrients are being absorbed... so that's good news!
My son's stuck at just below 140 lbs (at 5'11") and he can't seem to gain weight - this along with the fact that he still has diarrhea 3-4 times a day is concerning me... something to bring up at our adult GI meeting in Aug., I guess.  I'm considering trying those physilium husks I've heard some of you talk about.


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## Tesscorm

Thanks S mom  Just curious, is your son still doing any EN?  As I said above, Stephen still ingests 1500 per day from the formula...  no doubt this has helped with his weight gain.  Before getting sick, he was approx. 150 lbs, 5'10" and was down to 127 lbs when admitted...  so, although he isn't showing symptoms and seems to be absorbing nutrients, it has to be the maintenance EN helping him along to gain all this weight.

(Wow, he's still slim now...  writing it down now, I can't believe he was almost 40 lbs lighter last May!  :hallo3

By the way, we were in Niagara over the weekend...  I'd thought of you before we went, it would've been nice to connect with the boys but...  we were there for a tournament, took my parents along, etc....  just became too complicated! :yrolleyes: But, did the Clifton Hill tour, haunted houses, etc.!


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## crohnsinct

Ditto S mom, our doc gets way more excited about gaining in inches than pounds...even though pounds are still good.  

Awesome news Tess.  Now if only work would leave you alone.


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## Tesscorm

Yeah!!!  Major disruptions to my focus!  (Disruption to my reading/learning/replying HERE, not my work!  :lol


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## S mom

Ya, work gets in the way of a lot of things - hard to focus 
And, nothing like a little cheesy tourist trap glitz at the Falls... we do everything to avoid going there in the summer months but you gotta do it now it now and then!
It's scary how skinny they get - my son was at 98 lbs when admitted to hospital (at 5'10").  He looked like a famine victim.  Almost reaching 140 has been a huge milestone.
And, no, unfortunately, he's not doing EN anymore.  Once he got the all clear to start back on food in December, the tube came out and he was done (emotionally and physically) with the whole EN thing and the GI's didn't seem to encourage a continuation like you have done.  I tried to get him to drink some after the tube came out but he couldn't take the taste.  Since he didn't figure out how to take the tube in and out every day, it has made something we haven't really considered... he had had enough of having the tube taped to the side of his face!!  He was born with a cleft lip and I'm not sure whether there is something funky going on in his nasal cavities but he (and the nurses) had a really difficult time inserting it each time.  It's a good idea, however, I may ask next time whether or not there are any more palatable forms that he could drink for extra nutrition/calories... thanks for the idea!


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## Tesscorm

S mom ,

OMG, 98 lbs at 5'10"!!!!  Stephen was the same height and just before being diagnosed, I remember touching his shoulder and thinking he was just skin and bones!  I can imagine how worried you were!!!   But, that's great that he's gained 40 lbs!!   Absolutely a huge milestone!!  

I know that Modulen is a drinkable version of EN.  We haven't tried it but nurse gave us a couple of can to try out (more convenient for vacations, etc.).  And, the Modulen can be flavoured with chocolate, etc. syrups.  Also, as your son is not on EN for treatment purposes, if it's just for weight gain, Carnation breakfast shakes taste really good  and are full of vitamins (and calories).  Even before Crohns, when my kids were younger, I would give them half a shake each with breakfast (they are a bit thick/heavy to have as a drink 'with' a meal, so I diluted it with milk).

(PS...  :lol: I like the cheesy glitz :redface:  My husband rolls his eyes at me, but I love all the haunted houses, bright lights, etc.  We are usually out there for tournaments once a year.  Also love Niagara on the Lake - if we're without kids, I'll happily forgo the cheesy glitz and head for the wine tastings!  :lol:


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## S mom

Ya, I was a "basket case"... don't think I slept for months... I'm still a basket case now at times - lol :ysmile:  Maybe it's good that I live in "wine country"!

Thanks for the ideas!  Maybe I'll see what he thinks of the Carnation shakes... I tried to get him to drink those Ensure drinks that you can get from the grocery store but that went nowhere fast - he just ignores me like only a teenager can.  I think it might be because I was making him drink them before his dx and he now equates the taste with feeling sick.  So, maybe something new and different will interest him.  I know our GI said something about drinkable EN coming out recently in Canada (back in the fall) so I'll ask about that Modulen too when we are in.


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## Tesscorm

Finally got results from Stephen's bloodwork...  I'm annoyed it took so long!  I don't get it, this is supposed to be a world renowned children's hospital and I'm feeling like Stephen's been, not 'neglected', but a bit lower priority!!   At his last apptmt, GI said 'if we don't call you with results, then all is fine'.  Well, that wasn't going to happen :lol:, so I sent email last Wednesday, no response and then called on friday and got results 10 days later.  If I hadn't called, would they have called???

His CRP (27) and ESR (26) are still elevated but about the same as last time.  BUT, his ALT and AST are much higher - ALT 100 (was approx. 60 in April) and AST 62 (was about 40) (the previous numbers have been pretty consistent since last year).   But, now I'm really worried about what this could mean???  Why would his LFT numbers be rising? 

Nurse's email said they are going to try to move up adult GI apptmt.  

Are these numbers considered really high??  Are they high but not dangerously high?  Could something have caused them to be so elevated at his last test?  I'm not very familiar with any of these concerns so don't know how worried I should be? :sign0085:


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## Mom2oneboy

I understand why you are annoyed and certainly think it's justified.  Hopefully, you're new GI will have everything online where you can see it as soon as it's posted.

Regarding the AST and ALT numbers.....does the report show what the normal range is?  I've had S's bloodwork at two different labs and one shows the normal range is 12-32 for AST and 8-30 for ALT.  The other shows the normal range 10-45 for AST and 10-50 for ALT.  So knowing the normal range would help you know where he is on the scale.

Aren't AST and ALT markers for liver function?  I've never paid much attention to these numbers although S is always tested for them.  I'm curious now how they relate to Crohn's.


----------



## Tesscorm

I do have the 'normal' ranges at home, not on hand here but, from what I recall, they are somewhere along the lines that you mentioned.

At the last appointment, when his GI mentioned methotrexate, I did ask about Stephen's already slightly elevated numbers but his GI said that those elevations (at the 60 & 40 levels) were slight and he wouldn't be worried until they reached around 240 (now, don't remember if he was referring to AST or ALT) but, in any case, the current figures are 50-60% higher than the last.  I just don't know if the absolute numbers (the 100 & 60) are dangerously 'high' now, or if the change indicates a serious concern or if its something to be looked at but not necessarily something that is dangerous yet or urgent???

Now I'm also thinking that this means that Stephen will not be a candidate for methotrexate or imuran/aza...  he may need to move directly to the biologics???


----------



## crohnsinct

How ridiculously frustrating to have to wait for info like that.  I can gaurantee if any of them were kept waiting for any kind of info from any kind of business they would be mad and this is your child's health we are talking about.  

Sorry, I don't know anything about the liver tests but it sounds to me that even if they aren't in the worrisome range theya re climbing and that is probably why they are trying to get you in to adult GI sooner.  

They monitor O's liver on Remicade also...not sure what that might mean to S in terms of it being an option for him.  

Keep us posted.


----------



## DustyKat

Hey Tess, 

Good lord! Time for the :voodoo: on the wait for those blood tests! That is ridiculous.  

Our reference ranges are different again with normal being...AST <35 and ALT <30. These two enzymes aren't actually an indicator of liver function as such, you can have an elevated AST and ALT and still have a normally functioning liver. So it may not preclude Stephen from the immunosuppressives. 

These two enzymes generally indicate inflammation or damage to the liver. Since Stephen's levels have been consistently elevated a one off glitch can be ruled out. Exercise can affect readings but I don't know if that would produce the consistent levels that you have seen. The other thing I would look into as a possible cause before assuming it is has something to do with his Crohn's is his enteral feeds. That has been the other constant in his life and I wonder if something contained within the formula is having an effect on his ALT & AST??

Good luck hun! I surely hope it is easily explained away! 

Thinking of you, :heart:
Dusty. xxx


----------



## Tesscorm

The delay has really upset me!  I just hope it's not a factor of being in a large, busy IBD clinic in a large, well known hospital (i.e. too many acute patients and the less worrisome ones get 'downgraded')...  because, if it is, then I'm worried the next GI could be the same   But, I don't want to have preconceptions so, we'll just go with it...  let's just see when the apptmt can be made...

I've done some brief research and haven't found anything relating to EN that could really explain elevated enzyme levels (if anything, I found a very brief comment that EN should have a lowering effect).

But, interesting what you said about exercise...  Stephen has recently been weightlifting quite a bit and I found a study "Muscular exercise can cause highly pathological liver function tests in healthy men" that noted that AST and ALT can rise significantly and remain elevated for 7 days post-exercise (specifically weightlifting).  Don't think that explains the consistent 'slight' elevated levels for the last year but _may _explain the recent sudden rise.

A little bit off topic but, Dusty, can you tell me what it means when the text within the study says:  (P < 0.01)??

Onward and upward, right? :angry-banghead:


----------



## DustyKat

Hey Tess, 

I am so far removed from an expert in this it isn't funny! But I shall laugh anyway! :ylol:

When looking at studies P=Probability. So when it is stated as P<0.01 then there a 1% chance that the result was accidental. I will happily stand corrected if I have that arse about in some way! 

Dusty.


----------



## Tesscorm

You may not be an expert but very FIRST google - 'exercise and liver enzymes' and there was the study!  :lol:  Stephen has seriously just started to regularly weight lift about 4-6 weeks ago, the study says moderately active men 18+ (Stephen's only other recent activity has been a bit of yoga and working as a soccer ref = moderate activity)

Quote:
_Weightlifting results in profound increases in liver function tests in healthy men used to moderate physical activity, not including weightlifting.
Liver function tests are significantly increased for at least 7 days after weightlifting.
_

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2291230/

You're a star! :medal1:


----------



## Mom2oneboy

> You're a star! :medal1:


That's why she's our Mayor!!


----------



## dannysmom

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.


----------



## Tesscorm

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???


----------



## DustyKat

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


----------



## Tesscorm

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


----------



## DustyKat

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


----------



## crohnsinct

Same here and I wonder sometimes also.  O is with a large hospital based group.


----------



## Tesscorm

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?


----------



## kimmidwife

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?


----------



## Tesscorm

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!


----------



## kimmidwife

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.


----------



## my little penguin

: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.


----------



## Tesscorm

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  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...


----------



## Sascot

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


----------



## DustyKat

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


----------



## Tesscorm

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?


----------



## Sascot

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!


----------



## Tesscorm

Sascot said:


> Ah the joys of exercise - they say it's good for us and *yet sometimes causes alot of trouble *:ybiggrin:.


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._


----------



## crohnsinct

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?


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## Tesscorm

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*...


----------



## Tesscorm

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!


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## Sascot

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


----------



## Tesscorm

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!!


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## Farmwife

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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## Tesscorm

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.


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## DustyKat

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


----------



## Tesscorm

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!


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## DustyKat

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:


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## Tesscorm

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

:rof:


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## Farmwife

Tesscorm said:


> OMG, I'm having some very nasty images of what a root in a brothel is!  and :yfaint:
> 
> :rof:


DustyKat I 've never heard  that saying. I'm not sure if I want to learn.:shifty:


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## DustyKat

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:


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## Farmwife

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.


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## DustyKat

Oh okay then...(((sigh)))...

Couldn't organise sexual intercourse (a root) in an establishment frequented by prostitutes (brothel).


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## Tesscorm

: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!


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## Farmwife

Ya!!! Roots get in the way and we chop them down up here. OH MY!:ywow:


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## DustyKat

Well they are thin floppy things here too...until they get to the brothel. :ybiggrin:


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## Tesscorm

:rof:  :rof:  :rof:  :rof:  :rof:  :rof:  :rof:  :rof:

And then they blossom?!?!


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## Farmwife

Some many jokes, so little time!:ytongue:


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## Sascot

You guys!!  :rof::rof::rof:.  You know roots are now ruined for me forever :yfrown:


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## Tesscorm

Just think of this conversation next time you're gardening!  :lol:


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## DustyKat

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!


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## Mom2oneboy

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:.


----------



## Tesscorm

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!   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!!


----------



## Farmwife

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:


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## DustyKat

:kissgrits: Farmwife! :ytongue:

Dusty.


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## Farmwife

DustyKat
That's one area I haven't kissed on my girl.
 I'm sure not in sam hill gonna go kiss your!





:ybiggrin:


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## DustyKat

Hahaha...this is you kissing my arse...

	
	
		
		
	


	




 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:


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## Farmwife

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:


----------



## my little penguin

:rof::rof::rof::rof::rof::rof::rof:

you guys are too funny.

I so needed this.


----------



## crohnsinct

: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!


----------



## Tesscorm

I'm thinking we all have ADD


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## crohnsinct

For sure.  I tell everyone I have adult onset ADD!


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## Jmrogers4

oh my!  I'm sitting here chuckling and my sons want to know why.  What am I supposed to tell them :ylol2:


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## Farmwife

Jmrogers4 - You tell you boys about ever thing but the "roots" 
Those Aussie's sure are weird.:rof: ( Just kidding:yfrown


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## Jmrogers4

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:


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## my little penguin

:rof::rof::rof::rof::rof:


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## Clash

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!!!


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## Tesscorm

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!


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## Farmwife

:rof:


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## Clash

If talking nice doesn't work...you could try Miracle Gro..:blush::blush::blush:


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## Tesscorm

:rof:  :rof:   too funny!   Good idea!  . :lol:


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## Farmwife

And the hijacking of threads goes on!!!!


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## Sascot

:rof: My kids are constantly asking me why I am randomly laughing at my computer!!


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## crohnsinct

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?


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## Tesscorm

Betty Boop?

(You know, I think we should change this thread's name to Much Ado..."2"  :lol


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## kimmidwife

Crocodile Dusty?


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## DustyKat

> Those Aussie's sure are weird.


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... :ylol:


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## Tesscorm

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!


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## Clash

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!


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## Tesscorm

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??


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## Clash

Could be and I was thinking the same thing even if it was child/adult seems still to be really big gap.


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## Catherine

Increase in ferrin level is a good result if the hemoglobin level has increased or remained stable.


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## Sascot

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.


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## DustyKat

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


----------



## Tesscorm

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!


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## DustyKat

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


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## Tesscorm

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?


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## my little penguin

Stool sample - fecal caloprotectin 
If it up then you know TI versus shoulder just saying


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## Tesscorm

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!


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## crohnsinct

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?


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## my little penguin

Sending you lots of luck for the am


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## Tesscorm

: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!


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## Tesscorm

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:


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## crohnsinct

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.


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## my little penguin

: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). 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:


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## Twiggy930

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...


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## Clash

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:


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## Tesscorm

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!!!)


----------



## Clash

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!!


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## Clash

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!!


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## kimmidwife

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.


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## Tesscorm

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:


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## Clash

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.


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## kimmidwife

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.


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## kimmidwife

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)


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## kimmidwife

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!


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## my little penguin

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 .


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## jmckinley

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!


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## Tesscorm

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 !!!  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! )


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## Catherine

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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## Twiggy930

Tess,

At BC Children's hospital the fecal calprotectin test does not seem to be routinely ordered.  We have had it done but we had to take the sample to the adult GI office.  Apparently they are just starting to use the test in the pediatric clinic and I got the impression that they had not run the test on many kids in the ped clinic yet.  

I am thinking that somehow Canada is a bit behind the times when it comes to the fecal calprotectin test.


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## imaboveitall

Hello dear Tess, my EN pal.

The GI sounds a lot like V's Saint with these exceptions:

1. The Saint always always tests. 6-8 vials blood, stool, whenever any changes in her status and at every f/u. I would not be happy with no blood work or stool studies. Much can change since July and the statement "maybe he sees 20/day like him" is (sorry) patently ridiculous in this context. As a scientist who has worked in diagnostics I feel comfortable making that strong declaration.

2. What aboout a cap endo? I just was talking about this in Clash's thread. It is the gold standard for ileal disease dx. MRE/SBFT are inferior tools to actual photos. Why not do one? It's a breeze to go through next to a scope.

3. The Saint has had pts on LDN, worms, GCSF, another odd one I forget what it was, (thalidomide I think) and he was quite willing to use it though said he had never gotten a good result from any of them. He too thinks V is undertreated. As you know we tried Humira before pred and it was a fail. I went top down when I finally decided to treat as I wanted results FAST. So I am a top down advocate, sorta. V had a dramatic change in QOL when I decided to use Humira. Had she not, I may not have been so eager. And she had the cap endo that showed "significant" TI inflammation.

If it were V I'd want a scope and cap endo before using big gun drugs.
I was in your exact place last year, when EN ceased to be enough for her. 
I totally understand. :stinks:

4. You know The Saint loves lactoferrin. He too admits it isn't great for small bowel disease. But he orders it all the time. Makes no sense to me.


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## Tesscorm

OMG, I'm just so confused!  I'm sure most, if not all of you are like this but, I NEED a plan of action in place...  I know I have sort of a plan with the review of the MREs but that only takes me part of the way...   then what?!?!?  I've literally thought of nothing else all day!  LDN - yes, no, yes, no, yes, no...  Remicade - yes, no, yes, no, yes, no...

The GI has freaked me out a bit in the sense that I don't know how much time I have...  I'm feeling under pressure to get all the answers TODAY and I just can't. :frown:

*Does anyone know how/where I can find an imaging centre that provides MREs?  I haven't been able to find one, they all offer only MRIs (with the IV contrast, not the oral contrast).*  (By the way, before I posted the question here, I did send the GIs nurse the same question and he agreed that he'd like the oral contrast MRE.)  *Are MREs that hard to get?*

As much as I don't want the strong drugs, if I could be sure that Stephen needed remicade and that LDN wouldn't suffice, I think I'd feel better!  But it'll kill me to give him remicade if I'm not convinced that LDN wouldn't do the job and it'll kill me too if I convince him to do the LDN and he ends up with complications!  

I wish I wasn't such a control freak! :voodoo:  Wish I could just listen to what the GI said and then say 'okay' without a doubt in my head!  But, NOOOOO, I've got to friggin' overanalyze every little aspect!  Was even considering asking GI if we can test for NOD2 gene to see if he is predisposed to fistulizing/stricturing (thanks, MLP for that great Forget webcast!  :lol because, maybe, he wouldn't need remicade AS MUCH!  

And, really, the fact that the GI ran no tests just isn't sitting well with me.  I so liked him and found him so easy to speak with and am sad that I'm feeling that twinge of 'doubt/disappointment'.  I would have been so much more comfortable if he done as The Saint does and ran tons of tests!

OMG, what am I going to do!?!?!  :yfaint:   Sorry guys, I'm just venting (but I do need the info on the imaging centres if you have it!:redface...


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## Clash

Sorry for your frustration!! Vent away:voodoo::voodoo::voodoo:

Maybe once all the tests come together and you know where Stephen stands then the decisions will be easier to make.

I'm sorry the doc let you down with testing. Have you decided on who you are going to choose for the 2nd opinion? Can the GI give you any idea of where a radiology facility or group is located that provide MR Enterography? C's GI group is affiliated with the childrens hospital and they have MRE there. 

I hope you get some answers soon and are able to find some peace in them and the decisions you and Stephen are making!!


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## my little penguin

Hugs...
DS 's Gi is also in a children's hospital which where he had his MRE.
The schedulers only called it an MRI though enough though he drank barium and had iv contrast.
I know the decision is hard we went through the doubt each and every drug.
Thankfully we had a good Gi and Rheumo who laid out the facts for us .


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## Tesscorm

Unfortunately, the GI can't help me with MRE now.  He did agree to put in a request for an MRE but said he won't be able to have it scheduled any sooner than 4 months (pathetic, eh?) and, when I asked if he would accept an MRE from the U.S., he was a bit surprised and said no one had ever done that before but he was fine with that (we discussed that the MRE he schedules in 4 months will be a follow-up to whatever treatment we decide on now). 

Clash - Haven't decided on the second opinion yet.  Was actually going to ask you guys...  do you ask your GI for the second opinion or your GP?  And, I'm sure you're right... once I see that the ball is rolling with MREs, tests, 2nd opinions, I'm sure I'll feel better :redface:


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## Clash

Oh I didn't realize what you were saying about finding a facility. I get it now. It's weird when I type in your area and Radiology facilities with MRE the only ones that come up are in Boston and Valhalla and the like which seems to be quite the distance from you. I just can't believe that it wouldn't pull one up in the Buffalo area.


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## Tesscorm

Julie (imaboveitall), meant to ask you about V's initial EN...  She never did 'exclusive', right?  But, she was on 3000 cal per day???  Vaguely asked Stephen if he would consider redoing exclusive EN for six weeks to try to reinduce biochemical remission (and give us some time if inflammation is the concern), Stephen wasn't too enthusiastic.  Said he would if he HAD to but...  So, I'm trying to figure out the reasoning behind The Saint's use of EN without the exclusive period???


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## Tesscorm

Clash - I found a number of imaging centres in Buffalo and nearby but every one I've called said 'no' to the MRE, only MRIs.   I PMed Angie and Dutch as they aren't too far from Buffalo...  Dutch may have a lead for me ...

This may have seemed strange to the GI but we've gone this route before for Stephen , he hurt his knee years ago in soccer (in August) and the earliest we would book an MRI was November!!!  Well, with hockey season around the corner (in September), that just wouldn't do...  So, I got him an MRI in Buffalo a couple of days later and we got him into physio within a week.  He was already back at hockey by the time our MRI would have been scheduled!


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## DustyKat

Whoa, loads of catching up to do! :ywow: 

Okay, my two cents worth...

Yes to getting a good amount of current baseline testing done. As you have established an MRE is the way to go with imaging. It was very accurate at diagnosing the exact amount of inflamed small bowel Matt had. 
Also yes to faecal calprotectin and I would also have another battery of blood tests done, including Iron studies and Vit D, so that all testing is done within a small time frame. Also ensure any current symptoms are documented. 

I would not make any decisions until all that is done so that you know what you are dealing with. Armed with that, and the previous images, a clearer picture will emerge as to how the inflammation is progressing. I would then discuss again with the GI and then go away and discuss it with Stephen...

What the imaging and tests revealed.

How the GI feels his disease progressing.

What the opinion of the GI is regarding treatment based on the latest results. 

What treatment Stephen would prefer based on the information at hand and why. 

What you think would be beneficial and why. 

Does Stephen want a second opinion? Do you want a second opinion? 
(You could ask either the GI or GP for a referral) 

I do feel you have time on your side Tess, I know you have been hit for six but you don't have to rush into anything. I do however think that the inflammation needs to be addressed if it is present, I know you know how I feel about inflammation so I am stating the bleeding obvious by saying it! :lol: 

Given Stephen's age I think it is critical he is part of the decision making process, I know you do that hun, that way he is more likely to remain compliant when he finishes school and moves onto university. 

Once you get a plan of action into place you will feel more in control. It will focus and ground you. You have already started with the MRE and soon the rest will fall into place. 

Dusty. xxx


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## imaboveitall

Aw Tess...I so know how you are feeling...I get that way, obsessed and frantic.
I was exactly there last winter when we ended up with Humira. Many hugs :ghug: and understanding. Having an obsessive, analytical nature, I know, I know. My head would get to the exploding stage.

The Saint did test V for NOD-2. She was negative. So if he is offering it I'd do it.

She never had an MRE, just fluoroscopy with the UGI/SBFT and that he said was to look for stricture, he said he doesn't rely upon it to detect inflammation. He wants the pillcam. Again DO A CAP ENDO, those photos cannot lie!

He said as best I can remember, regarding why he didn't eliminate food, that he does not believe food intake has an effect one way or the other in reducing inflammation _in pts with no food allergy/sensitivities/intolerance._. He never said why and at that stage I was too freaked out as she was dying, to question further. He did say the formula would sustain her if she ate nothing but that if she "felt like" eating she certainly could. He is more experienced with using EN than the usual USA doc so I do think he knows whereof he speaks. I recall him saying food has no effect on IBD, as it is an immune disorder not a gut disorder per se.

Re: second opinions, I have NEVER asked for one but The Saint (more eveidence his ego does NOT exceed his ability) offers one often. He says he will "make it happen" in NYC, DC, PA "whichever is easiest" for me as he has colleagues he trusts in all three places. I always refuse.


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## crohnsinct

UGH Tess sorry so late to the party here.  You can not even begin to decide on treatments when you have already decided you want imaging and test results.  I agree with Dusty that once you have those and have a discussion with doc then you can make decisions.  

Have you found an imaging center yet?


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## crohnsinct

Tesscorm said:


> (really, Stephen's not a drinker,


So apples DO fall far from the tree!!!!  

Just one more comment...sometimes docs are overly in a rush with things.  Remember when O's doc was saying REmi wasn't working all the way said he wanted to use MTX and was walking out the door to get a nurse to teach me to give injections.  I basically had to tackle him and say whoa fella what about EN.  THen he was all "yes, I love EN...works blah blah blah"  I still am really confused as to why he didn't offer it and it is the one nick in his armor in my view.  So go ahead and slow the doc down if you need.  THese are big decisions and Stephen is your child.  Yes, he is way more comfortable and sure REmicade will work but maybe something else will also.  

Oh and as for EN, when I finally got our doc tali=king about EN he did say not good for maintenance but he did say some patients just cycle on ond off as needed.  He said some go a month or two and some could go years between EN courses.  Of course if my child only went 1-2 months it wouldn't be an option but it has been a while for Stephen.  

There now that I have muddied the water nicely I will go!


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## Tesscorm

I was feeling like you didn't like me anymore! 



Hopefully, I may have found a clinic!!!  (I was getting a bit worried cuz I just wasn't having any luck!)  Just waiting to confirm... 

Just saw your second post...  I did take you up on your suggestion re another round of exclusive EN...  :eek  Stephen was not too impressed!  Although, poor kid, did say he would if he had too.

Re falling far from the tree...  were we once in the same orchard!?!? :lol:


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## Sascot

Goodness me - I go away for 4 days and everyone else's life doesn't stop and wait for me?? :lol:
You know you sound just like me!  I go through so many arguments for and against medications over and over in my head.  Our GI isn't into the top down approach.  He wants to try the 6mp first as he thinks Remicade is alot stronger and to save it for when really needed.  Wish these GI's were all on the same page so as not to confuse us worriers even more. 
Glad you may have found a clinic for the imaging - hope that gets sorted soon.  I wish you good luck trying to make this decision, it is so incredibly hard.  I wouldn't worry too much about taking a bit of time to think things over.  I have managed to delay our GI giving 6mp for 4 months so far :ylol2:


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## imaboveitall

Amen, Sascot, the (VERY) different treatment approaches cause doubt and worry galore. Who is right? Why don't they agree? 
When I was struggling to accept Humira, The Saint said it was "safer" than 6-mp as far as mutagenic effect. He allowed V to eat while on formula; most docs do not. He's used unconventional and controversial tx, i.e., worms, GCSF, fecal transplant, naltrexone. One of his pts had a stem cell transplant and is essentially "cured". His was the worst case of Crohn's he'd ever seen, he said.

During one discussion on naltrexone he said while he had minimal success in his pts who tried it, that due to the "highly individualized" nature of IBD, one cannot predict which pts shall respond favorably. He has no doubt it DOES WORK In SOME pts as do the worms, etc. We discussed MAP, some folks' IBD is likely MAP related and others are not.

V's pediatrician suggested curcumin, specifically a brand called "Curamin". (he name alone is clever marketing and the website is laughable; to me anyway) Said it may get her off pred.  I was like, um...ok...drum circle next please...:yrolleyes:
Aside: I do know about using pure curcumin/turmeric but not when marketed as a panacea and in pure form, not compounded into a tablet and called a clever name.

A very confounding thing for us all....ahhh...time to stab...:voodoo::voodoo::voodoo::voodoo::voodoo:


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## Clash

Just checking in, glad you found a clinic I hope confirmation has come through!!


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## Tesscorm

Have found a clinic!!  BUT, they would like a script from the GI (when I had asked the GI if that would be necessary, he didn't think it would be...).  So, got back to the GI but he's away this week.  But his nurse/assistant has been super helpful so far with helping to get his past MRE CDs, etc. and she promised to put it at the top of his To Do list for Monday.  It's one of those 'two steps forward, one back'   I'm going to call the clnic back tomorrow and see if we can just schedule the apptmt and I'll fax them the script as soon as I get it.

I actually prefer it this way...  I was a bit nervous about driving all the way, paying for the test and then still NOT having what I need to make a decision!


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## Clash

Ugghhh I hate two steps forward one step back but it sounds like you are heading in the right direction! Yay! I understand about the the preference, I would be the same way!


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## my little penguin

I was wondering about the script since you were going to get an MRe.
We always have had to have one.
Hopefully they let you schedule it without the script.
I know our hospital won't schedule until they have the script.
Also ask about fasting before


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## Tesscorm

Yeah, I much prefer having the script...  I was a bit nervous when the assistant told me the doctor said it wasn't necessary.  I have to wonder if he thought I wasn't even going to end up getting one...  I didn't realize that it's way more difficult to find an imaging centre that does MREs compared to MRIs!  Found tons of MRI centres, lots of MRVs, MRAs but NO MREs!  Most of the places hadn't even heard of it???  I remember reading here that it's a fairly new test/technology; maybe that's why???

In any case, I've found one, now just have to get the paperwork in order.  Hopefully, I can schedule it for next week and pick up/fax the script by Monday!

Will confirm about the fasting too...


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## Farmwife

Here where we live MRE is called MRI with contrast.


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## Tesscorm

I did ask...  everytime they said they did ab MRI (and I explained it was for crohns), I asked about the oral contrast and then they'd say 'no'.  I then emailed the doctor to ask if the IV contrast was sufficient and he said 'no' :runaway:


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## kimmidwife

Farmwife,
An MRE is actually different then an MRI with contrast. When they say MRI with contrast they are usually talking about the IV contrast. 
Tess,
 MREs started being used about  a year or two ago. In fact when caitlyn was first diagnosed I asked about MRIs and was told they were not used for Crohn's disease. I was upset because i did not like that she was exposed to so much radiation with CT scans and floroscopes.
After he second year of diagnosis we switched to a different practice and after speaking with them about MRIs the doctor said he had heard about a new type of MRI ( MRE ) being done for crohns and he would look into it. He did look into it and caitlyn was one of his first patients to have it done.


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## DustyKat

Yep, gotta have that oral contrast Tess! And loads of it, bleh! But it is well worth it.  

Matt had to fast for 4 hours. 

When you guys say you need a script what are you talking about? Is that the same as referral? 

Dusty. xxx


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## Tesscorm

Yes, I think the script and referral (and requisition) are the same thing.


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## my little penguin

Script is short for a doctor 's prescription similar to when he would order a drug.
A referral is when a doc recommends you need to see specialist xyz.


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## S mom

Just curious... my son had an MRI this week.  He had to fast (fluids only) for more than 12 hours, then when he got there, he had to drink 1.5 liters of juice mixed with 'sorbitol'.  Then he had an IV that they injected some type of contrast in during the test.  What's the difference between this and the MRE?

Good luck with everything Tess!  It's quite stressful changing doctors.  We have now changed from pediatric to adult this past month.  Interestingly, while the pediatric GI was talking about Remicade as the next step, the adult one said she preferred to have us change from MTX to Imuran as the next step.  They all seem to have their own individual preferences and it's hard to decide what route is the best!


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## DustyKat

my little penguin said:


> Script is short for a doctor 's prescription similar to when he would order a drug.
> A referral is when a doc recommends you need to see specialist xyz.


That is what I know it as too. So why do you need a script for an MRE? 

Or is it when you a doctor orders a test there it is called a script? 

@ S mom - From what you describe it sounds very much like an MRE to me. 

Dusty.


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## Tesscorm

I think MLPs definitions are correct.

The two times I've gone/going to the US for MRI/MRE, the 'instructions' for the test were called 'scripts'.  When we took Stephen for his knee, the imaging centre said they did not need a script, however, perhaps because the MRE is a more complicated, they are asking for the 'script'.  When my doctor orders labs or 'typical' x-rays (sore ankle, etc.), it's on a 'requisition' form.

I think the three terms may have specific definitions but, maybe, are often interchangeable???  Especially when, as in my case, I'm going from Canadian to U.S. terminology???


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## Clash

I agree Tess, when C has MRI the nurse called it an order but when we arrived at the center the tech said the nurse had just faxed the script over. So, if that is what you all are discussing maybe they are just interchangeable but technically have set definitions.


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## Patricia56

The reason you have had trouble finding a place that does MRE's is because the radiologist who reads the films must have extensive training in order to be qualified to handle this procedure.

This is why it is still mostly done at major medical centers w/teaching hospitals here in the US and if you want someone who has expertise in pediatric MRE's you will need a children's hospital affiliated with a teaching hospital - and there may still not be anyone qualified to do the exam there.

A while back I suggested to someone (was it you?) that when deciding what facility to use for an MRE it was important to ask how many pediatric MRE's the radiologist there had done in the past year. Just because they do MRE's doesn't mean they have done any pediatric ones or more than one or two. If you have a choice between a center that does many vs a center that does very few - obviously you want the one that does a lot of them.


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## Tesscorm

Thanks for clarifying!  I really hadn't realized that booking an MRE was going to be difficult at all!  I'm all the more grateful that I've been able to find a location! 

Re your comments re the experience of the radiologist - is your concern the actual MRE process/test or the interpretation of the data?

And, perhaps, you can answer...  is the person who runs the test typically the same person who interprets and writes the report?

Thanks


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## DustyKat

Ah okay, thanks.  

It is very rare here that the term script here is used for anything other the prescribing of medication. 

The forms used for bloods, imaging and so on are all called referrals as are letters to specialists. 

@Tess - I don't know about the US but here a radiographer is the person that performs the imaging and the radiologist (doctor) is the one that interprets the images and writes the report. 

Dusty. xxx


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## Tesscorm

I think it's the same here (in Canada, eh!) - radiographer and radiologist.  This being the case, my plan _(I've always got some plan! :lol _is...

Since the GI asked me to get CDs of his past MREs (from previous hospital) because the reports made note of different 'issues' (so difficult to compare), he was going to ask his own radiologist to review the original CDs.  So...  I haven't taken the old CDs to him yet as I thought I would deliver the new CD at the same time; this way, he could ask the same radiologist to review all THREE MREs and eliminate any question of 'interpretation'.  (Thought if I take over the first two CDs, he may just have these reviewed and then just accept the report of the new MRE - again, we may end up with some inconsistency.  I don't think 'inconsistency' is typically a big problem but, figure, if I'm going through the trouble of doing all this, I may as well eliminate whatever questions I can...)

_Mommies and efficiency/multi-tasking just become second nature!_ :lol:


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## DustyKat

Well done Tess! Upstairs for thinking! :thumleft: 

You have elevated multitasking to a whole new level! :lol: 

Dusty. xxx


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## my little penguin

Sounds like a good plan.
Same in the US as Canada . Radiologist reads it. Tech does it.
Good luck


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## Patricia56

It sounds so simple doesn't it? Just get the procedure done somewhere and then take the CD to your guy. But in my experience it is not simple.

Yes the radiologist reads the "films" and when I spoke of experience it was in terms of the radiologist's experience.

The number of MRE's they've done also translate into how comfortable the techs are with the procedure and how likely they are to do it accurately or according to the "rules".

The radiologist's experience affects the quality of the report. It also effects the actual procedure if the radiologist directs them to retake an area after reviewing the initial results.

The techs experience obviously may affect the quality of the images upon which the radiologist is relying. Hopefully the radiologist intervenes if quality is an issue but I can easily imagine that there are times when it is unclear whether there's an issue of quality vs. an issue of difficulty getting a good result due to the severity of disease. 

As for taking all three to one doc for review. Grimace. This is not that simple either. Besides some differences in the way each place does the exam (I know there are = just ask people how much contrast and what kind) there's a long list of variables that make a direct comparison impossible. Things like what kind of prep they require, the quality and age of the MRI, the quality and age of the computer program, the speed at which they ran the test...there are probably a bunch more I don't know about and can't think of.

So don't be surprised if the doc reviewing all three studies hedges his/her opinions at least a little. Hopefully the three studies will be similar enough that he/she will have very little problem making comparisons over time.


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## Tesscorm

Thanks for all the info Patricia!  Yes, there are so many variables :ybatty: but, as much as I would LOVE to control all of them , I just can't.  Unfortunately, at a certain point, I have to just hope for the best.

I had such a tough time even finding a centre that can perform MRE's that I don't have the luxury of choosing between levels of experience.  Truly, my alternative is to have no MRE done now and choose a treatment (LDN or remicade) based on 6 and 12 month old MREs which, themselves, leave questions unanswered (even though they were done at the same hospital).  

The GI requested the films/CDs of the earlier MREs to try to answer some of the questions and, hopefully, a new MRE will provide a bit more recent info.


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## Tesscorm

I feel so nervous right now...  I'm so happy in the little bubble that I built BUT I just received the MRE report and, while I don't understand it, I can stay in my bubble.

I actually thought about just ignoring it until Monday, but...  ugghh, I need to know if my worst fears are justified.   So here goes, can anyone tell me what it means?


There is a short segment jejunal wall thickening and increased enhancement in the left upper quadrant of the abdomen.  There is moderate small bowel wall thickening involving the distal ileum through the level of the ileocecal junction.  There is mild hyper enhancement of the involved segment of small bowel wall with relative fixation of small bowel loops.  Colon is unremarkable through the level of the rectum.

IMPRESSION:  There is a short segment jejunal wall thickening with mild hyper enhancement consistent with Crohn's.  There is no evidence of associated bowel obstruction.  There is a lengthy segment of terminal ileum extending through the level of the ileocecal junction that demonstrates wall thickening and moderate hyper enhancement.  Fixation of bowel loops is noted.  Findings are compatible with active Crohn's disease.  Small bowel luminal narrowing is noted in the pelvis however there is no evidence of proximal small bowel dilatation.

So what does this mean?      Does it sound like there is some urgency in beginning a treatment??  That's probably a useless question because there's probably no way to tell, right?  

I'm just feeling...    :voodoo:  :yfaint:  :ymad:  :yfaint:


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## Clash

I can't help you with the report but just wanted to send support!! I hope the results equate to you guys being able to choose the treatment you are most comfortable with!:ghug:


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## Johnnysmom

Do you have an earlier MRE to compare it with?  

Just waiting for Dusty to come along and weigh in......

Obviously there are issues but are they getting worse or better?  Dusty will mild inflammation show up on an MRE or just damage?  

Has the G.I. shared his/her thoughts yet?

Sorry I am not more helpful


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## Tesscorm

I do have two prior MREs but, I suppose without really understanding them, it's hard for me to 'compare'.  Even with his prior two MREs, his GI had some questions because the radiologists referred to different 'issues' so had the same question - what has actually changed.  Stephen's new GI was going to send the original film to his own radiologist to have him review them.  GI clinic is closed today so won't hear from him until, at least, next week.

If it helps in comparison, this is what was in his last MRE in May.

-There is a long segment of significant circumferential wall thickening of the terminal ileal loops till the ileocecal junction, especially the terminal ileium, associated with mild to moderate luminal narrowing with diminished peristalsis, stranding of the surrounding fat, fibrofatty and vascular proliferation.  The involved distal ileum loops show evidence of restriction on the diffusion-weighted imaging.
-The multiple slightly prominent and enhancing lymph nodes throughout the mesentery and in the right iliac fossa which also show evidence of restriction on diffusion weighted imaging, likely reactive in nature.
-The proximal small bowel loops and colon are apparently preserved.
-No evidence of deep collections free fluid in the abdomen or pelvis.  No signs of enteroenteric, enterocolic or enterovesicle fistulas.  No evidence of bowel obstruction.


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## crohnsinct

Ergh!  Sorry what this is says to me is "jsDfjdfshjh,ajsdfdfc.kdshf.hdS"...mumbo jumbo mumbo jumbo.  Wish I could help but holding out hope Dusty will be a long shortly. 

I totally understand why you all get copies of tests all the time but this is actually why I don't.  The trying to guess what it all means would drive me crazy (well crazier than I already am).  And in the end it really wouldn't matter to me because I have zero zilch medical experience and would have to rely on the doc's interpretations and recommendations anyway. So basically I am useless to you.

When is Stephans next appointment with the GI?


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## xmdmom

Comparing the two actual studies is a good idea. DIfferent doctors may describe similar findings in different ways.  I guess I'd like to know if the doctor can see progression from last MRE and how active is "active."   I'm also interested to know what " increased enhancement in the left upper quadrant of the abdomen" might refer to.  Note there is no mention here of the abnormal fat stranding or lymph nodes that were mentioned in the prior MRE -- that could be improvement. The language (mild and moderate) of the current reading doesn't sound hugely urgent though I have no expertise here.  I can certainly understand your feelings--love your emoticons!  Let's hope the comparison will show that the inflammation is stable or improving.


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## Tesscorm

Crohnsinct - I totally get what you're saying...  I've sometimes wondered if all my researching, learning, etc. will really change the course of Stephen's disease or treatment and, in the meantime, I'm just driving myself crazy.  At the end of the day, with no medical background, am I really going to go against the GI's recommendations?  BUT...  BUT... BUT...
      you really didn't think I could be that complacent and accepting for long, did you?!?! :lol:   

By learning and trying to understand it all now, I can go into the appointment 3 steps ahead...  You know how you always wish you'd thought of that question AT the apptmt, well...  I can ask those initial questions here and now and get more preliminary questions/thoughts from so many here... many (most) of whom know so much more than I!   By the time I get to the appointment, I can skip some of the questions that have already been answered and move on to the more serious questions/concerns.  Hope that made sense  

We don't have an apptmt set up...  we'd planned that I would give him the films from the two old MREs plus the new one and he would have his radiologist look at them.    We would then speak by phone and decide what to do...  (he said then we'd set up a follow up apptmt in January).

Thanks xmdmom, yes, I think having one radiologist look at all three films at the same time would make things so much clearer!  It would be so much easier if the GI tract was broken down into consistent sections/lengths and every test commented on each of the sections...  THEN an easy comparison could be made!


----------



## crohnsinct

I hear ya sista!  I do the same but getting test results is just where I draw the line...although easily drawn since our doc and hospital don't offer and make you actually ask and I am so shy  (YES SHY) about those things I probably wouldn't unless I had a real need. 

hahaha like you need us to give you MORE questions hahaha.


----------



## Tesscorm

Shy!!!  :rof:  Oh,yeah, right..., I totally see THAT trait in you... like you were blushing in those balloons!  :rof:

OMG, if only you knew how many questions in my head right now but....  I do try to stay focused on just one 'subject' area at a time (can you have ADHD and OCD together??)  Right now... I've just gotta understand this MRE...  and then we'll move on... :redface:


----------



## crohnsinct

Tesscorm said:


> Right now... I've just gotta understand this MRE...  and then we'll move on... :redface:


O.K. then...see you in January!  Hey btw if the doc said January then I am guessing it's nothing too pressing.  I mean really, why would he leave Stephan alone for almost three months?


----------



## Tesscorm

No, it's not that he was leaving Stephen until January...  since I wasn't comfortable starting the remicade based on 6 and 12 month old MREs that left some questions and I had asked about LDN, we agreed that I would get the old MRE films and get an updated MRE from the U.S. and the follow up to decide on which treatment would be over the phone (and the next face-to-face apptmt would be in January).  I guess this could change dependent on the results and treatment decision???


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## Catherine

Good luck with getting answers, where it same position with MRI.  Sarah is both netter and worse.  The word 'odd' has been used.

Hopefully the review will give you both the information you need.

There another member aussie who seems really good at making reports understandable


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## xmdmom

You wrote "am I really going to go against the GI's recommendations?"

The thing to remember is that in many cases, there is more than one acceptable treatment path.  It's useful to ask your GI doctor, "What other options are possible? What are the pros and cons of the different treatments?"  There's no guarantee for any treatment... and no treatment plan is without risks... so your GI will give you his/her recommendation but remember another GI may give you a very different recommendation....


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## Tesscorm

I am planning to speak with Stephen's GP about all this and his thoughts re a second opinion with another GI (but, I may as well wait until I have all the info available).  

I understand what you're saying and it just adds to the difficulty of the decision!  As it is, it's a complete turnaround from his ped GI who had been 'happy' with EN.  He had suggested metho might be necessary, dependent on lab results and, I assume, was happy with the results as he never suggested treatment change after the results???

I'm really thinking that I may just ask for the LDN prescription.  While I am trying to get all this together, there'd be no harm in Stephen starting the LDN...  and we can always move onto to something more if necessary.


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## DustyKat

Hey Tess...:hug:



> IMPRESSION: *1.There is a short segment jejunal wall thickening with mild hyper enhancement consistent with Crohn's.* There is no evidence of associated bowel obstruction. *2.There is a lengthy segment of terminal ileum extending through the level of the ileocecal junction that demonstrates wall thickening and moderate hyper enhancement.* *3.Fixation of bowel loops is noted. *Findings are compatible with active Crohn's disease. *4.Small bowel luminal narrowing is noted in the pelvis however there is no evidence of proximal small bowel dilatation.*





> -*2.There is a long segment of significant circumferential wall thickening of the terminal ileal loops till the ileocecal junction, especially the terminal ileium, associated with mild to moderate luminal narrowing *with diminished peristalsis, stranding of the surrounding fat, fibrofatty and vascular proliferation. *3.The involved distal ileum loops show evidence of restriction on the diffusion-weighted imaging.*
> *5.The multiple slightly prominent and enhancing lymph nodes throughout the mesentery and in the right iliac fossa which also show evidence of restriction on diffusion weighted imaging, likely reactive in nature.*
> *1.The proximal small bowel loops and colon are apparently preserved.*
> -No evidence of deep collections free fluid in the abdomen or pelvis. No signs of enteroenteric, enterocolic or enterovesicle fistulas. No evidence of bowel obstruction.




Hyperenhancement = mucosal disease. Superficial. 

Bowel Wall Thickening = Transmural disease. Deeper.

1. The jéjunum is the segment of small bowel adjacent to Terminal Ileum. It would be a pattern consistent with the skip pattern of Crohn's and since it doesn't say anything of it's actual location with the jejunum I am assuming it is close to the Terminal Ileum. As you would know this was not present on his scan last May, so to me this indicates spread of the disease. 

2. The area of Terminal Ileum involved looks to be unchanged, hard to say though as no measurements are given, but note the mild has gone from this latest and only moderate disease is mentioned. 

3. I'm not sure if this is referring to the same thing but in my minds eye they sound related. The report from May states restriction and now fixation. This would be consistent with chronic inflammation as the process of inflamed bowel loops overlying each other, or over healthy bowel, over times will lead to them 'gluing' to each other. This process is what causes fistula's to develop and extend from one area of bowel to another. 

4. This means that although there is narrowing present it is not enough to have caused obstructive symptoms. If it was obstructive you would expect to find the bowel just above the affected area to be dilated or 'ballooned out'.

5. This may have been acute inflammation in the surrounding tissue that settled once the inflammation in the bowel went from acute to chronic. 



> increased enhancement in the left upper quadrant of the abdomen.


I am not sure what this is referring to. It does not mention bowel and they have stated the colon is clear so is it an organ or just an anomaly?? The organs in the left upper quandrant are the spleen and pancreas. 

It is difficult to interpret when two different reporting styles are used so please take what I have said as just my opinion and not an educated one at that! :lol:

Hopefully one radiologist interpreting and comparing the films will have  much clearer idea of what is going on. 

To be honest Tess it is looking like the inflammation has gone from acute to chronic in the Terminal ileum but the inflammation, while not deteriorating hasn't improved either. So treading water but the effects of that chronic inflammation is still causing some issues - the fixation of the distal bowl loops. The other area of concern is the jejunum and the apparent appearance of disease there and as I said, I am unsure of the significance of the left upper quadrant hyper enhancement.

Dusty. xxx


----------



## DustyKat

Johnnysmom said:


> Obviously there are issues but are they getting worse or better?  Dusty will mild inflammation show up on an MRE or just damage?


It is possible for mild disease to show up on an MRE and that would be evident in hyperenhancement as that is mucosal disease. 

Just for reference Tess: You are probably well aware of my dislike of inflammation simmering away. :lol: Stephen obviously has stricturing disease but just keep a note that chronic disease, by its very nature, that is under treated can lead to the complications that those with fistulising disease suffer with. 

Dusty. xxx


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## upsetmom

Just wanted to send you some....:ghug::ghug::ghug:


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## Farmwife

Hugs from us also!


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## S mom

Thinking of you and hoping that you'll have all this sorted out soon!  I'm sure in the end, you'll be comfortable with your treatment plan.


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## my little penguin

Never easy to wait.
Hope the GI can review quickly and you can come up with a plan.

Not to scare you but something I found out at conf. That I didn't know.
We focus on the cancer risk from the drugs but there is a risk 
As well when the disease is under treated.
Small bowel is 50-100 times that of a normal person.
Colon increased risk as well 
You get the idea.
So for DS at least no inflammation is acceptable to me.
Inflammation leads to cellular changes which can lead scar tissue but also cancer
If left to keep going through that cell changing loop.
I have not found a paper it just my theory .


----------



## Johnnysmom

Tess,

Difficult decisions.     Hoping the new G.I. has some knowledge about LDN and can give you some good advice.  We  recently moved and switched G.I.'s and it is good to hear a new perspective.  Just make sure that until January one G.I. doesn't think the other G.I. is on top of this.  My new G.I. didn't agree with Johnny's meds and wanted to discontinue the Allopurinol.  So if you stick with the old G.I. there is a chance new G.I. will have a different recommendation.  If you are at a crossroads and need to make a change might just be best to consult new G.I. now.  Just my 2 cents worth.

:ghug:  Never any great choices with this disease.


----------



## Tesscorm

Thanks everyone!!!! :ghug: :ghug:  Sorry I sort of bailed yesterday... had to actually 'work' a bit at the office :ymad: and then had a dinner last night (also, while I hadn't understood the details, the outcome of the MRE was sort of what I expected... so I had to crawl into my cave and lick my wounds a bit! :redface

I've got to 'digest' all the info a bit, always more questions brewing but just have to think through what questions I actually have!

But, really it so sucks (as you all know!)!!! :ymad:  I totally agree with eliminating the inflammation NOW and know he needs some meds (pisses me off because I always wondered if his last GI had him 'on acceptable hold' as he knew transfer was imminent and I should've trusted my gut and gotten a second opinion months ago! but, what's done is done!).

I feel like I'm left with the choices of a biologic and, if something happens, regret that I took this step!  or  Try LDN and if inflammation turns into complications, regret that I took this step! :ymad:  But, while I know this is where I will end up, I do need to speak to the GI first before making any decision and, hopefully, the decision will be easier to make after speaking with him and getting his thoughts.  

:ghug:


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## crohnsinct

Aw Tess...story of a mother's life huh?  Shoulda, coulda,  woulda.  We can't win for losing.  I know you know this but we do the best we can with the info we have and I know that all your decisions are made with great care and love (and sober I  hope) and this next one be made that way too!  Good Luck!


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## Crohn's Mom

Tess :ghug::hug::ghug::hug:

I'm right there with you in the questioning of the "what if's"; I'm also right there with you on the studying of the reports ! I have so many people tell me that it just makes them crazy to read all that stuff, research, etc.  Well, not me..It seriously calms my nerves; And I have a feeling it does the same for you :heart:

I am with a few others here in that no inflammation is the only good inflammation.  As you know, I have first hand experience on the watching and waiting to see what the "mild" inflammation can and will do if left untreated.

My thoughts are with you and I wish you the best of luck in your and Stephens decision on what the next course will be :heart:


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## DustyKat

Our Tess...:hug::hug::hug:

Walking the tightrope and balancing the world on your shoulders at the same time surely will send you away to lick your wounds hun. :heart: 

You are doing everything so wonderfully well Tess. I know you likely aren't thinking that of yourself right now but you are. Keep doing what you are doing and the answers will come. It doesn't mean you stop second guessing yourself and 20/20 vision in hindsight really is a bitch but lets face it...not one of us would go down a path if we thought or knew it would hurt our precious child. If only it were so simple as, if they take this medication x might happen but if they don't nothing will. 

I don't wish to put words into T's mouth but in many ways we have travelled a similar path and seen the havoc that untreated Crohn's has wreaked upon our daughter's (hugs to you T!). I know that isn't what is happening with Stephen Tess but it does make you think a little differently. It does't make the decisions any easier as such, it's hard to explain...maybe what it does is even out the fear. Does that make sense? I hate the meds with a passion but I also hate not having them. How sucky is that! :lol: 

You are a sensible, wicked smart and well balanced lady Tess and Stephen is blessed to have you. You have time on your side Tess. As you have said...make preparations for the GI appointment and then speak to him of your fears and concerns and ask him straight out...if this was your boy what would you do and why. 

Much love, :heart: 
Dusty. xxx


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## Sascot

I seem to have kinda missed the last couple of pages.  The dilemma's we face are not nice!  What if's are the worst. I'm still not sure if I'm doing the right thing not having Andrew on medication.  Good luck with your decision making - sometimes I think we should put all our options in a hat and pull one out


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## momoftwinboys

Tess. I can not offer any advice on treatment. I know how it feels to second guess yourself. You have worked hard to educate yourself and do your best for Stephan at all times. There are no perfect decisions. We are all doing our best for our kids.  I try to follow my advice to my sons.  They have been honor roll so far. They asked if we would be mad if they came home with a C or D. My response was as long as they try their best...truly their best then whatever grade they bring home is ok. All we can do is do our best and trust the outcome will be good. :ghug::ghug: 
Whatever decision you guys make... There is no doubt you have put in your best effort. 
Hope the radiologist reading all three results makes the correct path really clear.


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## kimmidwife

Hi Tess,
Just got on the computer finally. I read over the report you posted and it definitely sounds like he does need to begin a treatment plan sooner rather then later. Sorry I know this is not what you were hoping for.


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## crohnsinct

Sascot said:


> - sometimes I think we should put all our options in a hat and pull one out


YES!  A fireman's hat!


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## xmdmom

As Donald Rumfeld once said "There are known knowns. These are things we know that we know. There are known unknowns. That is to say, there are things that we know we don't know. But there are also unknown unknowns. There are things we don't know we don't know."  

It's not easy for individuals with Crohn's, parents or doctors to make these decisions.  Perhaps research will lead to a clearer understanding of which treatments are best for who, when and further quantify risks of different treatments and different degrees of inflammation.  Currently, we all make treatment decisions the best we can on the basis of what is known today, knowing that a lot is unknown.


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## Tesscorm

xmdmom, funny that you included that quote...  a friend whom we saw last night has a little boy having GI issues, she's worried about crohns because his cousin has crohns and my husband said 'oh, she wants to talk to you tonight about his symptoms'.   That made me really nervous, I'm happy to share what I know but I told my husband pretty much what you just quoted - there's LOTS that I don't know!  I also always try to keep in mind that 'a little bit of knowledge can be a dangerous thing'...  because, really, as much as I've learned, even in comparison to so many of you here, let alone a GI specializing in Crohns, I really have just a 'little bit of knowledge' in the grand scheme of things! :ybatty:

But, I want to thank everyone for your support and caring!!!  It really means so much to have friends who wholeheartedly understand the complications, consequences, concerns and can give truly valuable insight and advice.  Your friendship and advice are invaluable to me!!!!!!!!  :ghug:  :ghug:

In the interest of adding to my 'little bit of knowledge', just one question   The 'fixation of the bowel loops' - is this permanent?  I'm sure the degree of 'fixation' will factor into this question but would/could elimination of the inflammation cause the loops to become 'unglued' or, once fixated, do they remain this way even after inflammation is gone?

Also, Dusty and xmdmom questioned the 'upper left quadrant' - I hadn't mentioned it above but the MRE stated that lung bases, basilar plelural spaces, liver, gallbladder, spleen, pancreas, kidneys, adrenal glands, urinary bladder and stomach are all unremarkable.  Are there any other organs up there??  I will ask the GI about this, however.




> YES! A fireman's hat!


  :lol:  You have a volunteer handy, I'm sure...???


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## Tesscorm

So, just dropped off the CD at the GIs office and we may not have his radiologist's review until the end of the year!   Assistant said it might be sooner but year end is what she'd expect.

I've left a message for the GI to call but, if this is the case, then I think the timing has indirectly made the decision for me re the LDN.  If I'm going to have to wait this long for a report and a commencement of treatment, then I may as well start Stephen on LDN.  If it doesn't work, there won't be any benefit but there won't be any risk of undertreatment as there is no treatment except for the EN anyway. :yrolleyes:

I think this truly is one of the hardest parts for us... we want our babies treated immediately BUT...  it just doesn't happen!


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## Clash

Tesscorm, I am so sorry to hear that it is going to take so long to get those films read by the radiologist. Did they explain why or is it just a common thing(sorry I'm not familiar with the way the insurance system works there). Am I right to assume that the dr. will look at the report for the most recent, at least, and call you?

I know the wait has to be so frustrating. I think the longest wait we had was for the FC test to come back and that was waiting on snail mail since it was done in lab. I don't think it was quite 1 week(dropped it off on 10/12 GI nurse called 10/17 with results) so I can imagine all this waiting between GI appts, reading discs, etc is about to push you over the edge!!

Do you think if I throw in some of those voodoo doll smileys we can somehow voodoo the radiologist into reading them earlier...:voodoo::voodoo::voodoo:..just in case! Sending hugs and support your way!:ghug::ghug:


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## Tesscorm

The delays can be really brutal here in Canada.  I'm sure it varies depending on the specialty, how critical, etc. but still... uggghhh!

When I dropped off the CD, I innocently asked 'When do you think I'll hear back from the Dr., a week?  Two?'  She looked a bit confused and then said it probably wouldn't before the end of the year...  so I think it's a common thing.  (Although, keep in mind this is a bit different from just reading an MRE performed at your lab - here I'm bringing in three different MRE films from different labs to be read by his radiographer).  But, in any case, pathetic isn't it?  If I'd waited for the MRE, we would have waited until February to DO the MRE and then have to wait to have all of them reviewed.

I'm going to wait until Wednesday to hear back from him and then call back...  I want to start on the LDN now, there's no point waiting and I want to know his thoughts on, at least, the radiographer's report from the U.S. lab (ie on the fixation, etc.).  I'm hoping this won't be a issue - he was very patient at answering my questions at the apptmt, suggested a telephone conversation and his ass't is as helpful as she can be, so... I'm hoping we can move it along to a degree.

I've also set up an appt with his GP to get his thoughts and discuss a 2nd opinion...  apparently I've got time to spare anyway! :yfaint:

I'm a bit scared that nothing is being done again but, hopefully, the GI can alleviate some of that fear and I'll be happy to be able to start the LDN (perhaps, this is fate giving me this opportunity!  ...  _said the bubble!)_


----------



## Clash

It really sounds like you have a plan in mind and though I know the wait is frustrating it does seem as if the "wait" has at least help solidify a decision, so not all bad. If you decide on a second opinion, will that be another long wait? I think it is a great idea to bounce it all off of the GP, I always update C's GP and get his opinion on the treatment track and any concerns he would have. I can understand your fear with nothing being done as that would be my worry too but it is likely the GI's call on Wednesday will give you an even clearer picture and alleviate the anxiety of this wait. Keep us updated!!


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## Sascot

Wow that is frustrating.  It never ceases to amaze me that there must be so many kids sick and waiting for appointments that the GI's are so busy they can only give out appointments months in advance!!
Good luck getting the LDN sorted!


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## crohnsinct

Wow!  Yet again reading the posts here and there I am reminded to bring the biggest platter of Italian Christmas cookies to my daughter's GI.  We honestly never wait for much of anything.  E mails to the nurse are answered same day.  Tests are scheduled and done at his hospital post haste.  

Sorry for the delay but it does sound like it has given you the claer road to at least trying LDN while waiting.  But hate to gunk up the works but....if MRE's are read in December and doc says whoa things look bad let's go MTX or Remicade are you then going to need another MRE to see how much LDN improved things before jumping on those treatments?  Just asking because if you suspect so grab that February appointment.


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## DustyKat

Hey Tess...:hug: 

Ugh! So sorry to hear about the wait, that sucks! Booooooooo...:voodoo: 

I do think you have taken the positives away from it though and I agree with your plan.  See, told ya you were a wicked smart lady! :lol: You can have your bubble and LDN too! 

I also think Crohnsinct is on the right track too. LDN = follow up MRE if and when a change of treatment is thrown into the ring. I wouldn't do it without one. 

Good luck hun!

Dusty. xxx


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## DustyKat

Tesscorm said:


> Also, Dusty and xmdmom questioned the 'upper left quadrant' - I hadn't mentioned it above but the MRE stated that lung bases, basilar plelural spaces, liver, gallbladder, spleen, pancreas, kidneys, adrenal glands, urinary bladder and stomach are all unremarkable.  Are there any other organs up there??  I will ask the GI about this, however.


Sorry, missed this Tess...no, there are no other organs up there. The transverse colon does run through that area but they have already stated that the colon is unremarkable. 

Dusty. xxx


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## Tesscorm

Agree with you re another MRE...  I was thinking the same thing! :facepalm:  Perhaps if the Cdn. system were more efficient, eliminating duplication of work (ie two MREs) would speed up the process!  Because, Crohnsinct, Dusty, you're right...  if we start LDN now, what happens in January 7 (our next apptmt) when he says the MREs show deterioration.  Will things still be deteriorating after 6 weeks on LDN????  Ugghh!!!  How absolutely frustrating and annoying!!! :voodoo:  :voodoo:  But, I had sort of mentioned this to him at our apptmt...  if it took 4 months to get an MRE here, and if we started LDN, could we book it and have it already scheduled...  so, I'm going to remind him this is the plan!  But, still a very roundabout way of doing things!

And, Dusty, yes I was thinking the same thing re the transverse/descending colon but the MRE (don't have it in hand here so wording may be off but...) specifically says colon is clear (or unremarkable??) down to rectum.  Don't know how things are all packed in there (ULQ) :lol: but I wonder if (back) muscle could be slightly inflamed???  He hasn't been complaining but back pain seems to be a vulnerable area for him???  Just a complete guess here as I don't even know back muscle is part of ULQ


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## jmckinley

Uh Tess! I am so sorry about the wait! I am with you on trying the LDN since you have to wait anyway. We do want help immediately! If only..... I hope the read comes sooner! Be a squeaky wheel!


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## kimmidwife

Ugh Tess, that is stinky about the wait but I am really glad you have decided to give the LDN a try. I am keeping my fingers triple crossed that it does wonders for him!


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## DustyKat

DOH! :facepalm::facepalm::facepalm: On my part that is! Sorry Tess. :redface:



> There is a short segment jejunal wall thickening and increased enhancement in the left upper quadrant of the abdomen.
> 
> IMPRESSION: There is a short segment jejunal wall thickening with mild hyper enhancement consistent with Crohn's.


The affected section of jejunum is sitting in the LUQ and that is what the increased enhancement is related to. 

If you go to LDN whilst waiting I would book the MRE now. 

Dusty. xxx


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## Tesscorm

Thanks Dusty.  I was actually wondering about the jejunum and duodenum but assumed they would have referred to them by name rather than by LUQ.    This was actually one of the questions re the two previous MREs: his first (Nov 2011) mentioned some inflammation at the jejunum but his second (May 2012) did not.  So, GI wasn't sure if that meant the inflammation had gone or just hadn't been mentioned in May.

Do you (or anyone) know re my question on fixated bowel loops - specifically, if this is permanent once fixated or if the fixation alleviates once inflammation lessens?

(And, boy, Murphy's law is in full swing around me... my father had to be admitted to hospital yesterday!  :facepalm:  Truly, doesn't it always seem that when it rains, it pours.  Hoping all will be well once some treatment can be commenced! :yfaint

:ghug:


----------



## crohnsinct

Hey Tess...did you have your surgery yet?  Maybe you had it while I was away the past month or so but just wondering...


----------



## Crohn's Mom

> Do you (or anyone) know re my question on fixated bowel loops - specifically, if this is permanent once fixated or if the fixation alleviates once inflammation lessens?


fixation (to me) would mean adhesions/scar tissue, and no adhesions/scar tissue do not heal themselves once inflammation lessons. :thumbdown:


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## Tesscorm

No surgery for me yet...  am seeing my specialist Nov. 23...  so, that's pending TOO!!  Ughh!


----------



## DustyKat

I'm so sorry to hear about your Dad Tess, I hope he is okay. :hug: 

Sorry...again! I saw you had asked about fixation and then...boom...straight out of head! Maybe I should plug that big cavernous gap between my ears! :lol: 

Unfortunately I am with T on this one Tess. The fact that the mobility of the loops has gone from restricted to fixated seems to indicate that they are adhered to each other. As T has said, once that adhesion takes place it the resolution of inflammation won't change it.  

Dusty. xxx


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## Tesscorm

Thanks Dusty.  Left another message for GI... hope I hear from him TODAY!

Also, spoke with Skip re LDN and, have to admit, he did alleviate many of my worries.  So, I'm really ready to move on with some treatment and booking that next MRE!!!

(Dad seems to be much better today...  whew!   He's diabetic, had an infection on his toe which seems to have spread to his foot and caused massive confusion/forgetfulness!  Last night, didn't know his name, where he was, etc.  But, today, he seems to be cognizant of everything, everyone!   While we haven't spoken with the doctor, I'm thinking/hoping it must have been the infection for him to have improved so much overnight!)


----------



## DustyKat

Good luck with the GI! I hope he gets back to you today. :hug: 

It does sound like your Dad was suffering delirium brought on by the infection. I hope you get news today and your Dad is well on the way to a speedy recovery! 

Dusty. xxx


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## kimmidwife

Tess,
Just now catching up. I hope your Dad is doing ok! I will keep him in my thoughts and prayers. I am so glad you spoke with Skip. He is just amazing. Now that we live in Florida we live around the corner from his pharmacy and I have popped in there several times to speak with him.


----------



## upsetmom

Thinking of you..:hug::hug::hug:

Sorry to hear about your dad....i hope everything is ok.


----------



## Tesscorm

Not a lot to update re Stephen.  Did have an apptmt with his GP yesterday, he's such a nice man! :thumright:  He supported the idea of a second opinion and is sending referral, is re-running bloodwork as the GI had said the 'improvement' in his last labwork could have been a one-time thing, admitted he's not a GI so doesn't have the expertise but, didn't feel that the MRE showed immediate urgency although it did show continued inflammation.  All in all, nothing new but supportive... 

Havent' heard back from GI yet!!!  Sent email Wednesday and Thursday! :ymad:  And, I think their office is closed on Fridays???  So, am not expecting to hear from him until Monday at the earliest! :voodoo:

Unfortunately, things aren't well with my dad.  He's been forgetful for the past year or so but with isolated things - ie forgetting restaurant names, 'numbers' were a problem, etc. but, was still dealing with all the bills, knew when he was being overcharged, driving to see friends all over the city (downtown, next township, etc.), etc.  But, this infection has had a significant impact on his mental abilities (at times, over this week, hasn't known his name, where he was, etc.).  Tests were run both for the infection and dementia and he's been diagnosed with dementia.  While we know the dementia won't improve, they have said that once the infection is under control, he may go back to 'baseline', however, he may also be left with some lasting worsening of the dementia.  And, then to top it all off...  he was at his worst on Tuesday (mentally and infection-wise), was much better Wednesday, but almost back to Tuesday's condition yesterday.  Then, at 6:30pm, they tell me mom 'oh, he's been discharged, you need to take him home now!'  She hasn't even spoken to the doctor once!  She's been asking over and over again to speak to the doctor but, I suppose, their paths just haven't crossed.  My mom is at the hospital ALL the time, however, she has left a couple of times when my dad was sleeping, etc. - they were insinuating that the doctor has tried futilely to speak to her but she's never around!  My mom freaked!!!  Said he was in the same condition as when she brought him in, and actually worse than the previous day!  Said he can't even get up, how is she supposed to take him home when she wasn't given any notice nor time to make any preparations at home (will need some help to 'physically' move him and, as she won't be able to leave him at all, needs to do shopping, etc.)

(Canada's healthcare does have its issues! :ymad)  So, in the end, they agreed to keep him until this morning and a time was set for my mom and brother to meet with the doctor and discuss treatment of his foot (which, literally has 3 PURPLE toes, 2 when he went in on Tuesday!)  My mom is very upset - with the treatment, with the responsibilities she'll have NOW and with what the future holds    I know it'll seem better in a few days (tried to tell her ), once things settle and, hopefully, my dad is a bit better mentally but...  hard to accept when it's all happening.

So, has been a bit of a downpour here...


----------



## Clash

Awww...Tesscorm sorry to hear everything is up in the air with your Dad. I know it is so difficult to watch our parents go through illness and then to add doctor/healthcare system issues to that must be so frustrating!! I hope they are able to get the infection in your father's foot under control and that this will take care of some of the dementia he is exhibiting. Our neighbor had kidney issues and had been diagnosed with mild dementia, he ended up with an infection and there was delirium. It really panicked his family. After the infection was successfully treated he returned to his previous state, which did include the things you mentioned, forgetting street names or numbers small things, but was no worse.

Do I need to break out the stabbies for the GI? I think it is great that the GP is supportive and willing to send the referral for a second opinion!! Woohoo for the GP! I have everything crossed that the GI will call soon!!!

Sending support and hugs your way!!!


----------



## Farmwife

My my dear Grandparent BOTH have it. Yes BOTH. We found out 2 moths apart. My Grandparents our everything to us. We all took it hard. My Grandma tells other that she has to ask us not to call so much. I think that's to make the other people jealous! We moved them into a retirement village. They love it and so do we. I hope your dad feels better soon. You'll find with this disease it affects people different. My Grandma remember everything but numbers. My Grandpa is having a hard time walking. He said he doesn't remember to pick up his feet? PM anytime!:hug:


----------



## Jmrogers4

Tesscorm,
So sorry about your Dad, my dad also has mild dementia.  I suspect it is from stroke he had several years ago.  Everything seemed to be fine right after it, but it's the little things.  Doesn't remember things, we have watched him drive right past the house to turn around up the street and come back.  He was a postal worker here in town for years and knew every road in the city but now he gets confused about how to get places (luckily my mom pretty much drives him everywhere).  My grandmother also has dementia, she just tells everyone she's crazy because she can't remember anything.  My sister and I caught her flushing her pills down the toilet because she couldn't remember if she had taken them and it looked like she had too many.
Hope the infection gets under control and he is back to where he was.


----------



## Sascot

So sorry you are having to worry about your dad so much.  You would think that being in a hospital would be the best place to be looked after with the infection, etc, but it doesn't sound like he's had very good treatment.  I hope the infection goes quickly so he can hopefully improve somewhat on the mental side of things.  Hope you manage to get a second opinion GI soon as well.  Thinking of you!


----------



## Tesscorm

Thanks all!  :ghug:

Jacqui, your description sounds pretty much like my dad, at least before this infection!  Hopefully, it will get back to that!  They're home now and my mom's pretty stressed with worry, and scheduling for home care and assessments, etc.  Hopefully, it'll all settle down in a few days. 

And, no call from GI today!  :ymad: :voodoo: :ymad:  Will call again on Monday!  (GP couldn't believe it was going to take 6 weeks to get MRE review!  He said it can be done in 10 minutes, can't understand why it takes the hospital WEEKS!...  oh well, there are some things I know I can't change! )


----------



## DustyKat

Oh my goodness Tess, that is a quick turnaround from hospital to home for your Dad, it must be a very stressful time for your Mum and all the family. :hug: I personally think it is too soon and if it is possible I would have the GP go and check on your Dad so he has a heads up as to his condition now should the need arise for him to be called on for your Dad over the next few days. 

Demetia with delirium can be a very difficult time for families, trying to separate one from the other...any behaviour or changes that are new to your Dad now will very likely be the delirium and should disappear when the delirium is treated and cleared. 

I'm so sorry to hear that the GI is dragging his tail! Grrrrrrrr. :voodoo: and the GP is spot on! 6 weeks to look at a scan...piffle! 

Thinking of you and your family Tess. Take care hun...:heart: 

Dusty. xxx


----------



## izzi'smom

Oh, Tess. I am so sorry to hear about the downpour you have had to deal with. (((HUGS))) Hope things with your dad stabilize a bit. 
I absolutely can not believe you need to wait for a month for your case to be reviewed. THey are done here same day. The only time there is a delay is if previous needs to be obtained from another facility for comparison. What if there were urgent results or significant findings? I am so sorry. Keep us posted...sending you loads of love!!


----------



## Tesscorm

Just thought I'd update...  I'm afraid to even ask if things can get worse!?! 

Had to take my dad back to the hospital last night as he began to run a fever. Got there at at 11pm, more tests, they think now that's its not just cellulitis but that the infection is in his toe bone. We were up ALL night, not even a stretcher for my dad!  At 9am, they finally moved us to another area in the emerg dept which at least has a stretcher bed in a private room. They admitted him again. They are hoping that with increased antibiotics and a combination of antibiotics, they can save his toe. But, if not, they will have to remove it.  Dr was optimistic but only time will tell. 

Then! As I'm pulling out of the hospital parking lot, my husband calls and he is inconsolable. He finally tells me that as he was walking our dog this morning, she had a heart attack and passed away.  He didn't know if he should take her home for the kids to see her and say goodbye or take her straight to the clinic. As with all family pets, she's been such a huge part of our family, I told him to take her home so the kids had the option of saying goodbye if they wanted to. Needless to say, after being up all night, I didn't come home to a very happy place. 

Please tell me this is it!!!!!


----------



## Farmwife

Well I hate to tell you this but in my life hardships come in three's.
 Crazy I know, but three is the magic number of misery for my family.:frown:

So sorry that your dad has to go though this. Is it just your mom and you to help with dad or are there more?

My family pet is still my favorite. Still remember her and tear up from time to time when I think of her. Yes I use to have a heart for animals. Poor kids. Poor hubby and you!

I hope all goes better!:heart:


----------



## Sascot

You poor thing!  What a truly awful time you are having.  I agree - surely nothing else could go wrong now - you have had enough now!
I hope the antibiotics work this time and stop your dad's infection.  Sorry to hear about your dog, a sad time for your family!


----------



## my little penguin

Lots of hugs


----------



## momoftwinboys

So sorry to hear what your family is dealing with.
I can not stop the downpour...but am happy to offer an umbrella to protect you and your family.


----------



## upsetmom

OMG you have been through so much......:hug::hug::hug:

I hope things start improving with your dad.

Sorry to hear about your dog.


----------



## crohnsinct

OH TESS!  I am so sorry about your dog!  I am a fellow dog lover and have had dogs cross Rainbow's Bridge and know how hard it is. What an awful time you are having of it.  I pray that your dad is now in a hospital that will care for him and treat your mother with the respect she deserves and that the decisions come easy for you all.


----------



## Tesscorm

Thanks everyone! :ghug:  I truly hope we have reached bottom now and things will begin to improve. 

Hopefully, my dad will respond to the mess quickly. At least having him admitted will give my mom a bit of time to prepare for his return home; Fridays discharge was completely unexpected and obviously wrong!  He is back at the same hospital, as we believed that the fever was inresponse to the infection and it was middle of the night, my mom just wanted to return to where they had a record of all that had occurred.  They have temprarily put him in the exact same area he was in when they discharged him - I think it is giving my mom a bit of satisfaction that she can say 'I told you so!' after the way they treated her Thurs evening when we kept insisting he was NOT medically stable. :voodoo:

Farmwife - I have a brother so he and my SIL have been helping as well

Seems strangely quiet at home without our dog  but, the kids have had busy schedules today so that has helped.  Our dog was 10 years and that is generally the lifespan for this breed of dog. Unfortunately, it's part of the package when you have a pet. 

But thanks again everyone...  Feel like I've been coming in lots lately taking away the support and hunt been able to put much back! :ghug:  :ghug:


----------



## Farmwife

Translation please- SIL?

My child hood dog was 15 yrs old.:frown: I cried and asked why we couldn't down my lil sister since she was only 12. It only seemed far at the time.


----------



## crohnsinct

Sister In Law


----------



## Farmwife

Thanks, considering your not from her country.

Canada- Strange place, eh?:ybiggrin:


----------



## crohnsinct

Um...duh...SIL means Sister In Law in the states also...maybe you didn't get the memo way out there in the country yet.


----------



## Farmwife

crohnsinct,
SUF!!!!


----------



## crohnsinct

Sure hoping that means shut up fool otherwise my vision of you and all your heavenliness will be shattered!


----------



## Farmwife

How did you now that!!!!:ywow:

I made it up!!!!:ywow:

I'm going to bed you witch!:ywow: 

Are you like for real???:ywow:


----------



## crohnsinct

Haha admit it we are more alike than you care to admit...that and I am a city girl!


----------



## Twiggy930

Just catching up on this thread now...  Awwww Tess I'm so sorry to hear that things have been so rough lately.  Sending you a big ((((hug))))


:hang:


----------



## DustyKat

Oh my goodness Tess...:hug::hug::hug::hug::hug::hug:

What an difficult and heartbreaking time for you and your family.  

I hope you Dad will be okay this time and they are able to save his toe. I also hope they ensure he is well on the way to recovery before discharging him. 

I am so sorry to hear of the loss of your beloved dog. We surely do become attachéd to our pets and feel their loss so very keenly when they do pass on. 

Sending loads of love, luck and healing thoughts your way hun...







Dusty. xxx


----------



## Tesscorm

Finally a little bit of good news!   It's so little that it's silly to be so 'happy' about it :lol: BUT it's something that's NOT bad news!

Stephen's GP repeated all the blood work that was done a month ago...  haven't gotten a copy of the results yet but a few of the results are:

CRP 6.5!!!!!  The last time it was this low was June 2011, at week 5 of exclusive EN.  It was 11 last month and 27 four months ago!! 

ESR still high at 34, only down by 1 from last month.  

HGB same at 131 (shud be min 140) but, it's not going down...  this is pretty much the highest its been since I started keeping track of all his results (Apr 2011)

And, ALT and AST, which were worrying me as they'd recently doubled!  At normal range!!!! for the first time since April 2011!!!


*SHUSH!!!* _No one remind me of what I know about blood results!!! _:lol  I know the MRE still showed inflammation but, the fact that his CRP level last month was NOT a one-time fluke, makes me feel a bit better about going the LDN route...  

Now if only the GI would call!!!!!!!!!!!  Spoke with his assistant yesterday, she said he'd said he was reviewing Stephen's info/results over the weekend and would call...  didn't yesterday though! :ymad:

(Nothing really new with my dad other than slight improvements...)


----------



## awmom

Tess, it sounds like things are improving for Stephen!! I hope the rest of the results are good....seems he is on the right track.  You sure have been through a rough spell....life tends to though us some curve balls, but when it throws THREE it's so hard to give each the attention they each need.  I'm sorry about your pup....they are truly a part of the family and it's so sad they can't grow old alongside of us.  I hope your dad is improving...I know it's painful to see our parents hit rough times also.  I send warm thoughts and hope things start looking up on all fronts!


----------



## Farmwife

Tesscorm said:


> *SHUSH!!!* _No one remind me of what I know about blood results!!! _:lol QUOTE]
> 
> 
> 
> I'm right there with you sister. :hug: In my bubble the labs always tell the truth!:rof:
> 
> 
> It's a contest to see who's GI calls first.:voodoo:
> I have a feeling you'll win.:voodoo:


----------



## my little penguin

Wishing you the best of luck with the gi


----------



## Tesscorm

Even more good news! :banana:  Just spoke with my mom and she said my dad, confusion-wise, is almost back to the way he was before getting sick!  Said they were having normal conversations and he knew everything that was going on now, before, etc. and foot is beginning to look better!  Hopefully, we're turning the corner!

Wish I could hope for something positive re our dog but...   but we all know it's an outcome that every pet owner will face.  It could have been worse...  she wasn't sick, didn't suffer, etc.  And, where my husband walked her, off leash, she'd go running into a very large forest sometimes for 10-15 minutes before she'd come running out...  if it had happened in the forest, we may never have found her and would have been left never knowing if she'd gotten lost, had been hurt, etc.; because the heart attack was so unexpected, it wouldn't have crossed our minds.  So, if it had to happen, I suppose it happened in the least worst way.

Now, if the GI will just call...  I would actually start to see the :sun:  Farmwife - I hope we both get these calls TODAY!!!!!!!!!!


----------



## Farmwife

Glad to hear about your dad.

As far as dogs, we adopted an abused dog. Not only was she mistreated by her owners but the other dogs picked on her also. We got and loved her and she came to trust us. Got up one morning and she was lying in the way and I nudged her with my foot and said baby time to move, she didn't. She died in the middle of the night and my other dog was cuddled up next to her and didn't even know her new sister had died. We only had her for a year. Plus it was Grace's dog. Yep a sad day indeed. Hugs to you!

BTW in the mourning of your old dog do not go buy a new dog! Trust me. You'll wind up with a 90 pound puppy that drives you crazy!!!!!! She's still my puppy but what a PAIN!


----------



## crohnsinct

Thata girl Tess!  There are blessings in every situation.  Sometimes small and we have to look harder but they are there.  Lost pets are the worst.  I lost a cats twice.  Searched for months.  Followed every lead and nothing.  One was found dead in a neighbors barn and the guilt over not looking hard enough, or wondering if she heard us calling and just couldn't come consumed us.  The other was found months later when we opened our pool for the summer.  Just awful! 

I am so glad your dad is doing better!

Now...missing GI's on the other hand...did you put up posters around town?


----------



## Tesscorm

> BTW in the mourning of your old dog do not go buy a new dog!


We may actually end up with TWO puppies!!  My husband wants a hunting dog (English Pointer) that he can train and enter into competitions, etc. - a _manly _sport uke_r: :lol:  But, my question to him is 'what is the point of having a dog that won't be with me when he's away pointing and hunting???  If I'm all alone in the dark, lonely house...  may have to pull out that merlot and call the big, strong fireman/rescuer when I get spooked! :lol:  I'm thinking he'd be better to buy me a new doberman!



> missing GI's on the other hand...did you put up posters around town?


  Too funny!! :rof:  Maybe I'll start with sending the poster to his assistant by email!


----------



## Sascot

:rof: No puppies here - my kids still haven't forgotten the one we had for 4 days :ybatty:.  
Glad your dad is feeling a bit better and those blood results sound pretty decent!  Hope the GI calls soon!!


----------



## crohnsinct

Haha we bought a chihuahua for Olivia and it got sick two days later.  WEnt into doggie ICU and $5,000 later passed.  Hubby was O.K.'ing all kinds of treatments. Drugs that could cause blindness, kidney failure blah blah blah.  I told him, "that's it!  You are no longer in charge of my care if I am not able to make my own decisions...if you do that for a dog that we only had two days what will you put me through"...he said, "I've had you longer...don't worry"


----------



## Farmwife

crohnsinct said:


> Haha we bought a chihuahua for Olivia and it got sick two days later.  WEnt into doggie ICU and $5,000 later passed.  Hubby was O.K.'ing all kinds of treatments. Drugs that could cause blindness, kidney failure blah blah blah.  I told him, "that's it!  You are no longer in charge of my care if I am not able to make my own decisions...if you do that for a dog that we only had two days what will you put me through"...he said, "I've had you longer...don't worry"




:rof::rof::rof:To funny:rof::rof::rof:


----------



## Tesscorm

^^^ :rof: :rof:  ^^^


----------



## Farmwife

It's like the old joke.

The wife looks ant the husband and says, if you could only save one person from drowning, who would you save, me or hunting dog that took years to train?
 The hubby thought about and said the dog of course. Wives are easier to train.:voodoo::rof::voodoo:


----------



## Tesscorm

:lol:

Heard another one...  If you really want to know who loves you more, lock your wife and dog in the trunk of your car.  Come back in an hour and see who's happiest to see you!


----------



## Farmwife

Here's another one.

Hubby looks at wife and says you don't love me as much as this dog.
 Look at how she licks me on the face with love.
Wife looks up from her book and smiles and says I do love you more than that dog.:hug:
Hubby says prove it and puckers up for a kiss.:kiss:
Wife looks back at her book and says, I don't eat my own poo before I kiss you!:eek2::rof::eek2:


----------



## Tesscorm

WTF!!!!????  No phone call again!  What is it with these GIs???  I really just don't understand?  Are these GIs really so very busy that they can't call their patients?  Ugghh!!


----------



## Farmwife

I win! GI nurse called!
I'll put it on my thread.


----------



## kimmidwife

Tess,
I know what you mean took Caitlyn's new GI two weeks to,call in her prescriptions! She finally called them in.


----------



## Tesscorm

Wow, it just amazes me how long everything takes! :ywow:

Well, hopefully, today's the day!


----------



## Sascot

I hope the GI calls!  Maybe if we all send enough positive thoughts - he will phone quicker :ylol:
My mom just got taken into hospital this morning - there went my plans for the day!  They have admitted her for a couple days for tests. :yfrown:


----------



## Clash

I hope they call today, Tesscorm!!!


----------



## Tesscorm

Sascot - i posted on your thread...  but, good luck again with your mom!  I hope all turns out to be okay! :ghug:


----------



## DustyKat

Hey Tess, 

Sooooooooooo good to hear that things are going well with Stephen, bless him, and you too! I hope more than anything that this all bodes well for him.  

And your Dad too! Sending loads of luck and love that he is well on the way to a full recovery. :hug: 

Have you heard anything from the GI Tess? 

Dusty. xxx


----------



## Tesscorm

Nothing yet! :voodoo: :ymad: :voodoo:   Will be calling _AGAIN _soon.


----------



## Clash

Ok I say we rush the GI's office with rolling pins and wine bottles!


----------



## Farmwife

Ok, my rolling pin is ready! :ywow:Give me an address and we'll be there.

Then y'all will head to Grace's GI and help me there. :thumright:
Grace has bad canker sores now. Not eating much. Poor kid.:frown:
 Of course the pies, cookies and cakes will be easy for her to eat!:biggrin:


----------



## my little penguin

Take pics of the mouth sores.
I tend to email DS's Gi with photos all the time.
Tess-
Lots of baking today so rolling pin is ready.


----------



## Tesscorm

Gosh, we've had our Thanksgiving already but you all, with all your talk of baking, are making me feel very deprived way up here!!!  :lol:


----------



## Farmwife

MLP I'm starting to think I should take pics of everything she has!:ybiggrin:


----------



## my little penguin

Just finished the bagels fresh from the oven-
Not very
Thanksgiving like but only safe way for DS to eat them due to food allergies.
Pumpkin and apple pie are next on my list.


----------



## Tesscorm

my little penguin said:


> ...bagels fresh from the oven...
> ...Pumpkin and apple pie are next on my list.


MLP - not sure I should be 'thanking' you for the post above...  are you trying to make me feel better or worse?!?!? :lol:

:ywow:


----------



## my little penguin

Neither it is my mommy guilt day.:tongue:
DS only has pie or bagels etc if I make them from scratch so....
The only day I have any time is holidays since I work.
So lots of mommy guilt.
You could ask your dear son to pick up a pie at the store so you get all the goodies with none of the work.
Plus it frees your rolling pin for the Gi:ylol2:


----------



## Farmwife

Yes buy a pie. I DO!:kiss:

SHHHH, don't tell, you know who.:ymad:


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## kimmidwife

Hi Tess,
These Gi's can just drive you crazy!!! I hope they call today. Keeping my fingers crossed!


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## Tesscorm

Good idea MLP - aside from co-op, Stephen's only course this semester is Food & Nutrition and they recently made an Apple Cobbler!  Hmmm...  very Thanksgiving-ish!  Perhaps I should suggest he BAKE one this weekend!  :lol:


----------



## my little penguin

Now your thinking ...
We use cooking as therapy for DS.
At nine he can bake a cake, bread, bagels and make homemade ice cream.
Pounding dough gets out the "mad" about the diseaes plus it tastes good.


----------



## Tesscorm

Wow, I'm impressed! :thumright:  

Stephen's never been the most coordinated kid around (except in hockey! :lol  I was quite proud when he mastered toast at 16!  :medal1:  So, while not something I ever thought I'd say, I was quite happy when he changed his course this year from an extra English Lit credit to Food and Nutrition!  :lol:

But, in all honesty, I've been really impressed and think this is a great course for him...  they not only learn basic cooking skills but are learning about vitamin/minerals and the roles they play in your health!  Important for everyone to know but, especially so if you have a lifelong illness!


----------



## Tesscorm

FINALLY...  we have a plan with the GI...  still a bit more delay BUT...  he'd like to meet again before beginning on any treatment plan (LDN or remicade), we have an apptmt for Dec. 11 and he will try to have MREs reviewed by then! :thumright:


----------



## my little penguin

Woohoo
For a meeting to start a plan


----------



## Catherine

I like plans, now the count down to the appointment begins.


----------



## DustyKat

Woohoo! Roll on 11/12!  

Just a couple of things to mull over Tess cause you don't have enough on your mind already! :hug: and because I am so I want company!  

Do you think a course of Budesonide might be an idea to be thrown into the mix at some point? 

Has Stephen's bone/back pain issues ever been fully investigated in light of his Crohn's? I just wonder if his elevated ESR may have another cause aside from bowel inflammation.

Remember! Just my musings!  

Dusty. xxx


----------



## Tesscorm

:lol:  Ahhh, I have been strolling along the entocort path!!! :whistleinnocently:

I've done a little of reading :study: and, as far as I can see, entocort does work in the small bowel and has fewer symptoms then pred.  So, I _was _wondering if a short course of Entocort could reduce the inflammation that's indicated in the MRE???

As far as his back, I flip-flop as to whether I think it's related or not???  Months, months, prior to his diagnosis, he did have a back injury from sports... did physio.  GP believed the pain continued to return because of hockey twists, hits, etc., she identified the muscles that she could feel were tight and recommended massage/physio (and, unfortunately, ibuprofen ).  When he was diagnosed, the GI sent him to a rheumi due to his back pain; x-rays were done and he was checked by the rheumi and they found no problems.  But, it is coincidental that most of his back pain has gone away since he started EN.  He still has random days of back pain but they are relatively few (1-2 days a month, sometimes lasting a day, sometimes less, more, etc.).   Tiger Balm always brought him relief and he finds that massage, physio and yoga loosen up his mucles and help quite a bit.  I don't know what else can be checked re his back???  No one (GP, rheumi, masseur, physio therapist) ever found anything more than 'tight muscles':shifty-t:

I still use backpain complaints as an 'alert' to watch for GI symptoms but, I haven't seen a really strong correlation since EN.

But, even if back inflammation (even if unrelated to crohns) were causing his CRP and ESR to be raised, his MRE does show intestinal inflammation.  (Which is now confusing me as his CRP continues to drop! :yrolleyes


----------



## DustyKat

Ah okay on the back pain side of things.  

I always found CRP to be a bit of an enigma with Matt. When he was at his worst it certainly did reflect how he was travelling. As he stabilised it did continue to reflect that he had issues present but it fluctuated quite considerably and I probably saw that because he was having bloods drawn weekly for some time. It would be down one week only to see it rise the following week. Near drove me insane! Or it did it! :lol: 

My thoughts exactly about the Budesonide. Might just do the trick at nipping what inflammation is there in the bud. It does work well in the small bowel and yes, with far less systemic effects than Pred as it is designed to work topically. 

Dusty. xxx


----------



## Tesscorm

Yes, Stephen's CRP has fluctuated quite a bit...  was well over 100 when he was diagnosed and then down to 6.8 when on exclusive EN.  Since then, it has fluctuated between 17-31; October's and this month's results were the lowest since exclusive EN.

I'd love to have them checked once more before the Dec. 11 apptmt but I think I'm embarrassed :redface: to ask as his GP might really begin to think I'm a neurotic PITA mom!  :lol:  (Don't even want to imagine what the new GI, poor guy, thinks of me!  Since the first apptmt in mid-October, I've been to his office twice to drop off MRE files, have had a U.S. imaging centre fax him results, have had his GP fax him blood results and have called/emailed his ass't at least 4-5 times regarding his return phone call! :lol:  No chance of 'outta sight, outta mind' here! :lol


----------



## Catherine

Tess, you at mother wanting to be sure all the facts are in before very important decisions are made.  This is completely understandable.


----------



## Farmwife

Tesscorm said:


> No chance of 'outta sight, outta mind' here! :lol




That's a good thing!:rosette2:


----------



## Sascot

Glad you have a date to meet with the GI - not too long away.  Glad our rolling pins weren't needed - don't know if I have enough time to nip over inbetween hospital appointments and visiting hours :ylol:


----------



## Tesscorm

Catharine, That's exactly how I look at it...  it just makes sense to me, more efficient, productive, etc. but, it doesn't seem to be the way the medical system works :ywow:  Everything always seems to be slightly out of step... 

-First, let's make drastic changes/decisions based on results from 6-12 months ago...  
-I get new, updated results from the U.S. within 2 weeks...
-then have to wait for follow-up in 3 months'  

Doesn't this just take us back, fairly close, to square 1??? :yfaint: 



(I think this could be leading us into another 'medical system' discussion... )


Whew - no rollings pins needed!


----------



## DustyKat

Tesscorm said:


> .I'd love to have them checked once more before the Dec. 11 apptmt but I think I'm embarrassed :redface: to ask as his GP might really begin to think I'm a neurotic PITA mom!  :lol:  (Don't even want to imagine what the new GI, poor guy, thinks of me!  Since the first apptmt in mid-October, I've been to his office twice to drop off MRE files, have had a U.S. imaging centre fax him results, have had his GP fax him blood results and have called/emailed his ass't at least 4-5 times regarding his return phone call! :lol:  No chance of 'outta sight, outta mind' here! :lol


That's what Mum's do isn't it, especially IBD one's??? :lol: 

Ah hell Tess ask away! You can act all innocent and say before his consult you want the most up to date test results made available to you because some major treatment decisions need to be made. If they get snarky start crying...:shifty-t:

Dusty.


----------



## Clash

Sounds like everything is coming together! I'm with Dusty, I would ask away, if they get smart play the upset worried Mom whose baby will soon be own his on bit!


----------



## kimmidwife

Tess,
 Keep it up! The more you push hopefully the sooner they will get you in. It is ridiculous that they are putting off so long to see him when he has active disease and needs to be stabilized.


----------



## Catherine

Everything does seem to be moving slow for Stephen, it make our 3 Weeks to come to the decision to make no change seem quick.

These holding patterns are really hard on the family.


----------



## Tesscorm

I know!! :ymad:  Imagine if I wasn't constantly pushing!  I don't know what it is...  if our medical system is severely underfunded, if it's been the timing that Stephen's ped GI knew transfer was imminent so hesitated to start him on anything as he has been 'stable', if it's simply been bad luck in the scheduling of GI we now have (ie the wait to see him and now...)...

At the same time, my 'learning curve' took time as well so for many months, I didn't push or question his ped GI because I simply had no questions - he told me it was fine so I didn't question every result, every number, etc....  by the time I was questioning, his transfer was even more imminent...

But I really don't know how I could have moved things along any quicker...  :ymad:


----------



## Farmwife

Hind sight is always 20/20.

I so wish I would have known then, what I know now.

Hugs to you. :ghug:
Your doing a great job mom.


----------



## Tesscorm

I have a question re Flagyl...  It doesn't seem that Flagyl is commonly used to reduce inflammation.  When Stephen was admitted, his CRP was 136, after a week of IV Flagyl (before starting EN), his CRP was 4.  

Is there a reason why Flagyl isn't used more often to bring down inflammation?


----------



## kimmidwife

Flagyl does seem to be commonly used by some doctors but not by others. When we took caitlyn for her second opinion in New York when she first got sick that doctor immediately out her on flagyl while our doctor ( the one we fired) never mentioned it.


----------



## Sascot

I'm not really sure.  Andrew was only put on the Flagyl to try get rid of the abscess he had, but never seems to be used for the Crohn's itself.  I know what you mean about pushing - I pushed and pushed with Amy and it still took weeks to get anything done.


----------



## kiny

Tesscorm said:


> Is there a reason why Flagyl isn't used more often to bring down inflammation?


There's more than one reason imo.

-it's cheap, doctors get money to push expensive drugs all the time, flagyl isn't one of them

-there's the issue of resistance, the more resistant bacterial strains become the more risk for an eventual superbug once more and more people get infected with it and more and more antibiotics are use (I don't care about that personally, I will not risk my own life to save a life 10 years from now)

-there's the controversy of what crohn is, for some researchers it is an uncontrolled immune response, for others the AIEC bacteria and other bugs they find are the cause of the inflammation, if you believe the former then flagyl would do nothing

-there's the issue that flagyl is not macrophage penetrating, AIEC is macrophage penetrating, so the effect of flagyl is less than something like cipro and clarithromicyn and other types of macrophage penetrating antibiotics

-there's the issue that flagyl itself will create resistance for other antibiotics down the line, you could argue if it's smart to use flagyl which isn't as effective as other antibiotics. while flagyl carries less risks than other antibiotics, if you're giving it and it has no effect, you're basically screwing yourself over for stronger antibiotics down the line, the effect of flagyl will lessen the effect against AIEC when you use other antibiotics down the line as shown in studies

-antibiotics unbalance the gut flora, which isn't a good aspect of flagyl, flagyl is not selective, to even create AIEC colonisation to begin with in rats they need to use antibiotics, antibiotics are a double edged sword in the gut, on the one hand you might be killing some pathogens, you are killing good bacteria that can stop the spread of pathogens in the gut lining and they help keep PH low which limits AIEC spread

to sum it up: money, difference of opinion on causality, resistance, affects gut flora


----------



## upsetmom

Tess not sure why its not used there .....our DR told us any flare would be treated with flagyl and if that didn't work on its own he would throw in another antibiotic ....they don't like to use streroids


----------



## kiny

I should add another reason really.

-about 10 years ago, is when they used more antibiotics than they did now, since they had less drugs specific for crohn, those tests were not negative, but also not really positive

but, there were many issues with those tests, many of the tests used non-macrophage penetrating antibiotics, many used incredibly low doses, many stopped too soon, many built up the dose too slow which leads to resistance, they didn't use probiotics which leaves the mucosa vulnerable to colonisation, etc

basically antibiotics were discarted at that point, they argued that if it were bacteria, antibiotics should have helped

so, now, with much better tech available, they are discovering AIEC and other bugs, and they realise they're not normal bugs, they're macrophage penetrating, AIEC replicate inside macrophages, they're intracellular and if the antibiotic is not macrophage penetrating, it might not work very well against macrophage penetrating bacteria (it doesn't mean it's useless, flagyl has some, effect against some strains in limited numbers). What it does mean is that they can point to those old studies and explain why they're flawed.

That doesn't mean that antibiotics now suddenly would work, it just means, that people shouldn't base their facts on old studies done 10 years ago, because there are plenty of reasons that can explain why they failed outside of concluding that crohn is not related to specific strains of pathogenic bacteria.

10 years ago they tried antibiotics for crohn, and it didn't help enough, they concluded antibiotics didn't help for crohn, without knowing which bacteria they were targeting, with many flawed studies, without knowing the bacteria are macrophage penetrating (trojan horses if often used, they infitrate a magrophage and exploit it). When doctors say that antibiotics don't work for crohn, many base their opinion on those studies done long ago, which shouldn't be happening but it does. 

(I'm not saying antibiotics work or even work for everyone, I'm just saying, many doctors don't have the right facts in front of them)


----------



## kiny

Here is an actual picture of LF82, one of the AIEC strains found in crohn's disease patients (there are some more, but LF82 is the most common one)

AIEC stands for Adherrent Invasive E Coli.

Adherrent refers to their ability to adhere to enterocyte cell.
Invasive refers to the ability to invade the intestinal wall (flagella).

They can form biofilms which allows them to stick together and they find them in the barrier on the gut wall of crohn's disease patients.

If you don't believe in them...even though they're there but ok.....then you don't believe in antibiotics. Some argue they're not the main cause of the inflammation (even though they often find the skip lesions at the place of LF82). What I do think is that maybe not everyone has them.







So when you ask why some don't give antibiotics, one of the reasons is that the opinion on crohn's causality can differ from one person to the next.


----------



## crohnsinct

FW=Fraud!  Yes I caught that buying pies comment! 

Tess: I thought of you as I ate my pumpkin pie, chocolate peanut butter pie, Tiramisu and chocolate whoppie pies with vanilla coconut creme!  And you go ahead and ask for those tests.  You have a big decision to make and I think the more info and the more current the info the better!  

MLP: mommy guilt?  I know all about that but gee whiz you are an awesome mom no guilt about that!


----------



## Farmwife

crohnsinct
How dare you talk to a monitor like that. I out rank you crohnsinct!
I don't even now if I'm in the right forum, but hey here I am more accomplished than YOU.:rof::rof:


----------



## crohnsinct

I got that invite also!  Just haven't accepted...yet..not sure I need that power!


----------



## Catherine

This forum is great because the so many great parents looking at what we say and would pick up mistakes or poor advice quickly.

But aza/6mp forum I find i'm much more concerned about what I say.  I seem to saying a lot the regular blood testing is very important with med.  It almost like I need make a list of answers from the posts I have received from this forum.

Maybe this monitor thing is good because I thinking I need tio write out some notes.


----------



## Tesscorm

Kiny, thanks for all that info!!!  All new info for me, so am trying to really get a grasp on it...

First, cipro is not an option for Stephen as he had an allergic reaction when he took it.

My question...  From Stephens blood results, he did respond positively when he was treated with flagyl. But, if it is a bacteria, why wouldn't have been killed off with the flagyl?  As his results were good, the flagyl did 'something', so if I assume the 'something' was that it killed the bacteria, why has the inflammation returned?  Do you believe the flagyl didn't kill it all? Or that the bacteria was reintroduced to his system?


Crohnsinct - chocolate peanut butter pie!   sounds amazing!


----------



## my little penguin

Tess the problem is there are probably about 4 or more subtypes of ibd 
According to current thought . Experts are still working out how to classify them.
Sometimes respond well to abx . Some to diet . Some need immunosuppressants .
But they haven figured out which is which for an individual yet so....
They still treat one size fits most.
Crohn's is chronic so killing bacteria does not cure the disease.
The cyclic keeps repeating.
Flaygl can cause many side effects including numbness in the limbs
When used long term.


----------



## my little penguin

http://www.ccfa.org/resources/antibiotics.html




> Antibiotics are frequently used as a primary treatment approach in IBD, even though no specific infectious agent has been identified as the cause of these illnesses. However, researchers believe that antibiotics can help control symptoms of IBD by reducing intestinal bacteria and by directly suppressing the intestine's immune system.
> 
> Antibiotics are effective as long-term therapy in some people with IBD, particularly Crohn's disease patients who have fistulas (abnormal channels between two loops of intestine, or between the intestine and another structure—such as the skin) or recurrent abscesses (pockets of pus) near their anus. Patients whose active disease is successfully treated with antibiotics may be kept on these as maintenance therapy as long as the medications remain effective.


Hope that helps


----------



## Tesscorm

Thanks MLP. I wasn't thinking of using flagyl long term, I was just wondering if it would be an option to take down active inflammation (similar to the use of steroids). It crossed my mind when I was looking at Stephens past results and realized that there had been such a drastic reduction in his crp when using flagyl alone that first week.  Now that was flagyl thru IV, not sure if flagyl in pill form would have the same positive impact nor whether it could have a negative impact as 'pills' could have an impact on intestinal flora???


----------



## kiny

Tesscorm said:


> Kiny, thanks for all that info!!!  All new info for me, so am trying to really get a grasp on it...
> 
> First, cipro is not an option for Stephen as he had an allergic reaction when he took it.
> 
> My question...  From Stephens blood results, he did respond positively when he was treated with flagyl. But, if it is a bacteria, why wouldn't have been killed off with the flagyl?  As his results were good, the flagyl did 'something', so if I assume the 'something' was that it killed the bacteria, why has the inflammation returned?  Do you believe the flagyl didn't kill it all? Or that the bacteria was reintroduced to his system?
> 
> 
> Crohnsinct - chocolate peanut butter pie!   sounds amazing!


If the bacteria is AIEC or MAP or any other, then it's extremely hard to kill them all, they're intracellular, they are present inside macrophages and since flagyl doesn't penetrate them (cipro and some others can) they would persist. Another issue is the time it takes them to reproduce, if they're slow growing bacteria they're hard to kill, they are the most vulnerable when they're splitting.

Another issue is the biofilms, if you've ever put your hand in a drainpipe or something similar, and seen how goo sticks together, that's how bacteria stick together, they form biofilms to avoid getting killed by your own gut flora and antibiotics. 

Another possible reason is the flagella AIEC use to penetrate deep into the gut barrier, they're long flagella that they use to penetrate deep beyond where the gut flora is, they're hard to destroy there by antibiotics.

There's many reasons why flagyl could work but not be able to induce remission or cure for that matter.


There's another way antibiotics could work, which is when they're referred to as "broad spectrum", if the gut flora is responsible for the increase of inflammation then limiting gut flora to places of lesion would limit inflammation. They see this when some people had surgery, if the bacterial load is decreased, regardless of bacteria, if the load is decreased in general, healing accelerates. But I don't think that's what going on when normal people take flagyl, but it's possible.


----------



## xmdmom

Tess,  earlier you asked why flagyl isn't used more often.  Kiny gave some answers.  In addition according to the online prescribing info (2010), Crohn's disease is not an approved indication for its use. Toxicity is also an issue since Flagyl has the potential to cause peripheral neuropathy and seizures, frequently causes gi upset, and has been found to be carcinogenic in rats.  Finally, the efficacy of flagyl appears to be limited (from what I found on UpToDate Literature Review of Antibiotics and Crohn's.  http://www.uptodate.com/contents/antibiotics-for-treatment-of-inflammatory-bowel-diseases ) as delineated below. 

-flagyl has "modest" benefit for Acute luminal Crohn's in the colon but not in the small intestine.

-flagyl is a first line therapy of uncomplicated perianal fistula following drainage of associated abscesses. 

-short-term flagyl may have "modest" benefits in preventing postoperative recurrence in patients with ileocolonic anastomosis.

-----


----------



## Tesscorm

Thanks MLP, kiny, xmdmom!  All this info is really helpful!  It really is so amazing to be able to ask a question and get so much useful info and advice!!  :worthy:


----------



## Crohn's Mom

Oh Tess...you really have been riding that rollercoaster 
It's time to jump off !!

Big hugs ~ I'm always following your thread and thinking of you! 
xoxoxo


----------



## DustyKat

I have found Flagyl to be prescribed as front line treatment, in our case with Pred, here and since upsetmom has had that same experience it might be a common protocol, well in  NSW. 

The other thing to remember with Flagyl is it also has anti inflammatory properties. 

Matt was on long term antibiotic therapy: 

Flagyl and Augmentin Duo Forte for 3 months prior to surgery. Matt had a psoas abscess and a pigtail drain insitu for those 3 months. 

Then Flagyl was continued at half the dose for 3 months post op. The Crohn's specialist he saw was one that subscribed to the point of view that research indicated 3 months of post op Flagyl increased the chances of gaining and maintaining remission for a longer period of time. Since Matt did not experience side effects to the drug I had no objection to it. 

Now has it indeed provided this positive outcome for Matt? I don't know because: 

Sarah - Diagnosed on the operating table. Bowel an absolute train wreck and she came very close to dying. 68cm of bowel resected. Usual antibiotic therapy post op in hospital plus extra due to peritonitis. Nothing once discharged and has been in remission for six and half years. 

Matt - Planned op. 28cm of bowel removed. Usual post op antibiotic therapy in hospital followed by his 3 months of oral Flagyl once home. Been in remission for 18 months. 

Dusty. xxx


----------



## Crohn's Mom

Just checking in here Tess to say thinking of you and your family, and I sincerely hope you are holding up ok !

:hug::hug::hug:


----------



## my little penguin

:hug:Tess


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## Sascot

Was wondering how things are going?


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## Farmwife

OK I'll join the band wagon. How's ever thing going?:hug:


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## Crohn's Mom

Well if we're making it a party , where's Crohn'stinct with the wine? And who's bringin snacks while we wait ?


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## Sascot

Oooh, wine, did someone say wine??  I'm needing some of that! :ycool:


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## Farmwife

Oh, oh, me snack lady of my town!:dance:

How does cherry turn overs:dance:, home-made pretzel:dance:, triple chocolate decker cake:dance:, home-made caramels:dance: and last but not least elephant ears.:dance:

I'll bring my own fruit punch!


----------



## crohnsinct

Where am I?  I am here waiting for you guys!  Getting our girl nice and cozy with her Merlot! 

Oh yeah Farmwife you will probably BUY all that stuff...we are on to you.  You probably don't even live on a farm!


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## Farmwife

Kiss my country grits, you city slicker wino!:voodoo:


:rof::kiss::rof:


----------



## muppet

These slow authorizations/transfers/justifications/stories of general bureaucracy are the only things that really put me off the idea of universal healthcare. I think we desperately need it in the US, but man, if I had to put up with even more red tape than I do now with my two kids I'd be homicidal.


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## Tesscorm

Thanks everyone!  (And thanks Dusty re the Flagyl...  never had a chance to reply to your post above! )

It's been a bit crazy here   Dad's back in the hospital and must amputate his toe.  They did an MRI to see the extent of blockage (oh..., infection in the bone no longer the issue, it's now lack of circulation).  I'm not sure if the results of the MRI can affect the decision for the surgery???  Specialist should be meeting with my parents today to discuss.  But, my dad is in great spirits!  While I'm sure he's not happy about this outcome, he also doesn't not seem too concerned about losing a toe!   The dementia/alzeimers diagnosis seems to be in question now as his regular GP is adamant that it is wrong and was made based on delirium caused by the infection...  whatever...  not an issue now!  

Still waiting for Stephen's apptmt on Dec. 11...  he had D yesterday and Sunday   Hoping it's simply something he ate!!  You know I'm a really distracted IBD mom when I completely *forgot *to ask him how things were last night/this morning! 

My surgery for my fibroid is Jan. 17.  After 6 weeks on supplements, iron is still 5, HGB 84.  Specialist said it will be almost impossible for me to get it up until the fibroid is removed.  However, am supposed to keep up with the supplements to try to, at least, maintain this level!  Had to sign off that I would accept a transfusion during the surgery as she's concerned it may be necessary (will transfuse if HGB reaches 60).  So, am being a good girl, taking my 3 supplements, eating oatmeal (providing 50% daily requirement) WITH a tablespoon of blackstrap molasses (more iron!) and berries (vit. C to help absorb) EVERYDAY! uke_r:  _Are we sure merlot doesn't provide you with iron!?!?!?_

So... have been trying to jump in and out here but, really, that's all I've been able to do...  feel bad that I haven't been able to keep up with most of the posts so I hope I haven't missed anything important and that everyone's keeping well (or, at least, stable!).  Thinking of you guys!!!  :heart:   And, thanks for thinking of me! :ghug:


----------



## Farmwife

I'm sorry about you dad's toe. I hope he recovers quickly.
I Hope boy was naughty and ate a no-no food.
I hope the surgery brings you some relief, it did for me.


----------



## kimmidwife

oh Tess sorry to hear about your Dad wishing him a swift recovery. Also sorry to hear about the fibroids they are not fun. Hopefully Stephen just are something. keeping my fingers crossed. Now I am thinking what to bring to the party!


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## Jmrogers4

Just made a new pizza dip  I think it turned out pretty well as it was gone within about 10 minutes.  They said the only problem with it is it there needs to be a bigger pan of it.  Farmwife you sure are making me hungry! and it is only 9:30 here.
Tesscorm - Wishing you all a speedy recovery! Hugs :ghug::ghug:


----------



## my little penguin

Hugs Tess wishing your dad well.
Also eat spinach salads lots of iron there.


----------



## Crohn's Mom

OH Tess...

just lots of luck, and love and hope !!

Thinking of you always :rosette2:


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## momoftwinboys

Tess  sending healthy healing thoughts your family's way.


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## DustyKat

Oh man Tess...:hug::hug::hug:...hugs and healing thoughts all round for you guys! 

I hope your Dad is okay and all goes well with his op and continued treatment. :heart: 

I hope things have settled for Stephen! Roll on December 11! :heart: 

And last but by no means least...I hope you are able to keep everything stable in the lead up to your surgery hun. :goodluck: With all you have going on you truly are a superwoman! :medal1: 

Thinking of you and yours and sending loads and loads of love and luck your way. 

Dusty. :Karl:


----------



## Tesscorm

No operation for my dad yet!  He's home AGAIN!  Hopefully, this is a more 'controlled' discharge...  he's home with IV antibiotics for 4 weeks (a nurse will be by every 8 hours, for 4 weeks, to adjust meds!! ) Becoming quite complicated...  the surgery will be high-risk so they are avoiding surgery due to his blockages/circulation/diabetes, tip of toe is gangrene so surgery MUST be done, rest of toe is pre-gangrene so I think they are trying to determine how much of the toe needs to be amputated so they only need to operate once.  I think the 4 week antibiotic schedule is to fight any infection while giving the toe time to heal or not heal.

Haven't spoken with the doctor directly as, while my dad was in the hospital, the doctor would just stop by at any time...  unfortunately, I can't just take time off work and wait a day or two for the doctor to stop by!  And we know what it's like trying to reach a specialist!?!? :ymad:  But, I plan on trying to call anyway...

Still think the whole process is messed up...  his discharge instructions say follow up appointment 'as necessary otherwise in 4 weeks'! :ywow:  _What determines 'necessary' if his current situation doesn't?_  I was going to suggest a second opinion but my mom's exhausted and my dad's spirits are beginning to fade and he's weak, tired to be going in and out (especially now that he's got a nurse coming every 8 hours)!  Guess all we can do is watch and see how things go.  His GPs been great, stopped by last night, is going to stop by again tonight... so that's a bit of reassurance!

Otherwise, Stephen's fine and I'm fine, just tired!  I think I'm finally beginning to run on fumes only!  Soooo glad it's Friday!


----------



## muppet

Been there, done that, on the whole "the situation right NOW doesn't constitute necessity???!!"  :-(

Keep on them.


----------



## Clash

That is so much to be going through with your Dad. I know you must be entirely worn out from his latest hospital stay.

Great news that Stephen is feeling fine! I have had both of you on my mind lately. Thanks for the update, sending hugs and support your way!


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## DustyKat

Thanks for the update Tess...:hug: 

So good to hear your Dad is home, at least now he will be able to get some decent sleep and rest. I hope the antibiotics are able to halt and improve the situation with his toe. Do they also have him on Clexane (blood thinning) injections to help improve blood flow to the area? 

The GP or nurse will know if a "necessary" pops up but also from your point of view you can gauge from what you observe now. If you are talking purely in terms of his toe then no change or improvement will mean he can wait out the 4 weeks. 

Just speaking generally I know this waiting can seem unnecessary but sometimes it can produce very positive outcomes in cases like your Father's by eliminating or greatly reducing the surgery required. The same can be said for some people with IBD. I was one of those that waited 3 months for surgery with Matt. It was bloody hard but the outcome was worth it.  

:hang: Tess, you are doing FAB!!! 

Dusty. xxx


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## kimmidwife

Tess,

Glad to hear your Dad is home. Sending get well wishes his way! How is Stephen doing?


----------



## izzi'smom

Glad to hear that you rdad is home and hoping that things slow down a bit for you, girl!! Our doc took Izz off the Flagyl that was prescribed when her GP thought she had c diff...she hasn't been on it since. It made her nauseated, though, and keeping up with TID dosing of liquid nasty is something I'd rather not revisit. It didn't do a thing for her, either.


----------



## Tesscorm

Dusty - my dad is taking a blood thinner.  And, yes, I do understand that they are hoping to minimize the surgery and, perhaps, reduce the risk by treating any infection.  His GP is being great...  he is worried about the gangrene in his toe spreading, so has offered to come by every day this week to check on his foot.  This is a huge relief for my mom - knowing she's got a doctor's eyes on it!  So far, he's stable! 

Stephen's fine...  those two days of D have passed!  - so, hopefully, it was just something he ate??  His apptmt is next week!!! :applause:  I'll be happy to clarify some of the questions...  does the GI still think remicade is necessary given that his Oct labs were much better than July's and then the November labs were again better than October's.   True, labs don't always show the full picture but as Stephen's labs DID reflect his disease at diagnosis and the fact that the improvements are 'across the board' (CRP, liver enzymes, WBC, etc.  Only exception being ESR.), I'd really like to get the GIs opinion as to why remicade would be necessary now.  I'm wondering if the MRI results indicate stricturing/tightening due to scar tissue but that inflammation activity is less?  If yes, the remicade won't fix the scarring, so perhaps there is a window of opportunity to treat the inflammation with, possibly, entocort? and maintain with LDN??  IDK...  lots of questions to ask! :ywow:  But, in any case...  he's feeling good now! 

Thanks Angie...  I am going to ask his GI what he thinks about using Flagyl to reduce inflammation.  My only experience with it was the week following diagnosis when Stephen was inpatient - as far as I know it was his only treatment that first week... but, perhaps, an oral form wouldn't be as effective (he didn't continue with it in any forme, once he left the hospital).  Another IDK


----------



## Scaryman

Tes, glad your dad is home. Let us know how it goes. Prayers sent your family's way.


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## izzi'smom

Glad to hear re: your dad's stability.

I was told IV and oral versions of Flagyl are comparable in effectiveness. (I had a SUPER hard time getting her to take/keep down the liquid version 3 x a day...it was gross-I tasted it). I actually inquired re: the IV version.


----------



## Tesscorm

OMG, even though Stephen's 18, I'd probably have just as hard a time getting him to take it if it tastes that bad!  I'd have to give it to him through the NG tube!   :lol:

But, really, Flagyl may not even be appropriate in this circumstance???...  It was just something that crossed my mind when I was looking at Stephen's past results and realized what a huge improvement he'd had in the week he was in the hospital (CRP went from 136 to 3.6)  And, as it was pre-EN, I'm assuming the improvement had to have come from the Flagyl???  But, for all I knew back then, maybe there was some other medication???  I just don't remember anything else - I know steroids weren't used and he's allergic to cipro.  Oh well...  we'll see what the GI says


----------



## awmom

When Nico was given Flagyl (because I did not want him to take any more prednisone and the doc thought that he was flaring) several years ago, he had enormous improvement. It was given to him in pill form twice a day.  The main problem was that it made him nauseous, so he cut it down to half a tab twice a day and then I think he cut down to once a day, not positive, but I know it was a tiny dose. He did this for several months but then his doc decided to take him off of it.  As a matter of fact Nico asked me the other day if he could start taking Flagyl again as it made his stomach the best it has been since this all started!  I think the biggest worry are the possible neurological side effects (and creating resistant bacteria).  I know this doesn't give you any answers, but a part of me believes that a skewed intestinal microbiom is at play somewhere in this desease, and so maybe an antibiotic does make sense.  I'm glad your appointment is coming up soon and you can get some answers!!  It sounds like your dad is getting really good care, and watched carefully....hopefully that brings a little peace during such a difficult situation.  Best of luck.


----------



## Tesscorm

It just sucks that every treatment plan you consider always has some concern associated with it!!  As you said, Flagyl and neurological issues! :ybatty:  I'm hoping we can come out of the apptmt with a plan that will work and that I feel comfortable with (of course, at the end of the day, my 'comfort' is NOT the issue but... it would be nice if the comfort was there ).


----------



## Sascot

Wow, you have been going through alot!  I'm glad Stephen is feeling good and the D has gone!  We have an appointment on Wednesday and I'm sure the meds question will rear it's ugly head.  Have to say I would be happy for Andrew to just take Flagyl - he took it for 3 months and had no side effects.
Sorry to hear about your dad's toe, I can imagine just how fed up he is with it all (and how worrying it is). My mom is still in hospital with no treatment plan and unable to walk. Can't get 2nd opinion appt till 13th December.
I hope the antibiotics get rid of alot of the infection for your dad so his op is as safe as possible.


----------



## Tesscorm

Sascot - when I catch up on your posts, I feel like we're living parallel lives! :ywow:  you've certainly got your hands full too :ghug: 

Good luck on Wednesday - I hope you can come out of it with a treatment plan you're comfortable with!  :hug:


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## jmckinley

Hugs to both of you Tess and Sascot! It's hard enough to deal with the changes that go on with our kids. Adding in other problems and it quickly turns into something that can feel out of control. I hope you get some resolution soon!


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## DustyKat

> I'm wondering if the MRI results indicate stricturing/tightening due to scar tissue but that inflammation activity is less? If yes, the remicade won't fix the scarring, so perhaps there is a window of opportunity to treat the inflammation with, possibly, entocort?


I think your questions are very valid ones Tess.  The improved bloods may well mean less inflammation and revised plan. 

Just throwing it out there...improved bloods may also mean that it is primarily scar tissue that is present. 

Thinking of you! :hug: 

Dusty. xxx


----------



## Tesscorm

Wish me luck! - have Stephen's GI apptmt this afternoon.  Hopefully, he will have the review of the three MREs but, regardless, we will be discussing/deciding on a treatment plan.   (Hoping for the best news - inflammation down, LDN a go, no concerns, no worries! :lol:  But... I just know my bubble is about to burst :ack.  Will update later...

My dad is going to have surgery tomorrow to amputate part of his toe...  this does not seem to be too worrying to the doctor, however, his concern is that the wound may not heal due to his other health issues.  If this is the case, he will have to undergo a much more serious surgery.  Hopefully, it won't come to that.  Just an interesting aside, he's had a nurse visiting everyday re his IV meds, a couple of days ago, she said she'd spoken to an infectious disease doctor and that she was going to submit a recommendation that this ID doctor see my dad.  It's seemed really rushed - suddenly she's spoken to the ID doctor, dad's GP has sent the referral and the ID doctor will see him at the hospital tomorrow before the surgery?!?!?  My mom didn't ask specific questions although, as far as she's concerned, having one more doctor's opinion is always good...  just found out about this last night and found it strange???

Lots of twists and turns on this rollercoaster! :yfaint:


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## Johnnysmom

Good Luck today Tess!!!!


:goodluck:


I am interested to hear what the Dr. thinks about the improved labs and scar tissue vs. inflammation.  

Hope all goes well and you get some clarity today


----------



## Crohn's Mom

Wishing you nothing but the best of luck and love on the appointment today ! 

I find it odd that your dad hasn't had a consult with an ID doc already considering what's happening 
I hope all goes well with the surgery tho and there's no further complications.


----------



## my little penguin

Hugs...
Good luck this afternoon.
Hope things go smoothly for your dad .


----------



## crohnsinct

ACK!  Trying to stay off forum until I get something done for Christmas and got on late (yeah no still nothing done) to wish you luck.  Ugh!  I am late.  You arte probably in there...quick conference us in so we can all ask our questions and give out take on the situation.  

Wow!  Dad;s surgery moved fast. I am guessing this is good news that the other issue cleared!?


----------



## Clash

Just want to wish you luck with your appointment today!!! I hope everything goes as you want it to!!!!:goodluck:


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## DustyKat

Sending loads and loads and loads of luck and well wishes for the appointment today Tess! 

:goodluck::goodluck::goodluck: 

I hope all is well with your Dad too Tess. :hug: 

Dusty. :heart:


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## Crohn's Mom

Ho hum ho hum 
Tapping my thumbs 
Pacing the floors 
Watching the doors
Of the forum open 
Just sitting here hopin
To have good news 
And no blues 
Hope all went well -
When you have time , please, do tell!


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## DustyKat

Wow T, you are a woman of many talents! :lol:


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## Tesscorm

Tracy, I didn't realize how talented you are!!! :thumright:


:ack:  :yfrown:  :ack:  :voodoo:  :ack:  :confused2:

Well, that pretty much sums up how I feel about yesterday's apptmt!

End result is we're most likely going with remicade.  So, how we got there...

MRE shows no change from previous MREs - so good news that things haven't worsened, but no improvement either.   He said it's not easy to determine if narrowing is from inflammation or scarring but, there is inflammation present - a significant length (his radiologist didn't give a measurement but the previous one did at 20-30 cm) in his distal/terminal ileum (and a bit at the jejunum).  There's no way to predict when the inflammation will cause further problems - just because it hasn't so far, doesn't mean it won't in a month, 6 months, one year, etc.  

He wants to get the inflammation under control as quickly as possible - said he truly believes that remicade (although he'll go with humira if we choose) is the correct treatment.

Flagyl, entocort - doesn't believe they will be effective in bringing the inflammation down.

Testing - he doesn't put a lot of value in labs.  Believes there are too many variables that could affect lab results and that they are only a snapshot of that day (ie Stephen could eat something that could inflame his gut for a couple of days and, if labs were taken then, the 'higher' levels may not be an accurate overall picture).  Uses labs just as indicators to guide towards other testing, assessing treatments, etc.  Didn't give much value to the fact that Stephen's labs have all been improving since the summer.

Wants to do an endo- and colonoscopy in January.  When Stephen was diagnosed through scopes, they showed inflammation in his stomach, duodenum colon and TI.   All MREs since then have indicated no inflammation in his stomach and colon (no mention ever of duodenum, only jejunum) - he said sometimes MREs don't catch all inflammation, scope will give him more info re these areas.

Pill cam - asked to do pill cam so that we can also see small intestine.  He doesn't like the risk of it getting stuck, I said I would also like to do the dummy pill cam first - he said he preferred the scopes and is satisfied with the info he has from MREs re the small bowel.

Biologics vs. immunosuppressants - said for the small increased risk in going to biologics, he believes they are more effective than immunosuppressants (between metho and imuran, he believes imuran is more effective so if we choose this route).  Between remicade/humira - prefers remicade mainly because of compliancy/follow up - patient won't take treatment a day late, won't inject incorrectly, etc. plus can get f/u info from nurse if necessary and labs can be done at each injection.  I asked him what he would be looking for in the labs, he said any indication that something is off (with Stephen there, I really didn't want to push questioning re cancer indications, etc.)

LDN - will no longer prescribe because now that he's seen the original scope results (which he hadn't seen before??), said he's not comfortable prescribing LDN when there is a chance the crohns is through the stomach, colon, ileum (this will be confirmed at the scope but I do not believe it will change his mind re the LDN).

So, where do I stand...  (actually, not sure if I'm still standing :yfaint...  He seems very sincere, truly seems to believe that remicade is Stephen's best option.  On the other hand, is offering NO options - no antibiotics, no entocort, barely immunosuppressant...  for the most part, reason being he doesn't think they will be effective (how is it that nothing else can be effective?).  Wants to do scope because he doesn't feel MRE is accurate enough to confirm there is no inflammation in stomach, etc. yet feels MRE is accurate enough to give him reassurance that small bowel has enough inflammation to warrant remicade (so pill cam not necessary). :ywow: :confused2: :ywow:  Am I being nit-picky??  He did give his reasons for these questions...

GI really speaks of the dangers and consequences of untreated disease - I'm a bit torn if he's going overboard or if he's just trying to truly make us aware of the risks.  Both times we've left there, Stephen's left fearful to not start remicade TODAY.  :confused2:  So, I have to take into account that Stephen is very much leaning towards doing remicade but is willing to listen to a second opinion.

So, for now, we're going to book his scopes and, I suppose, start the process for remicade (insurance, etc.).  

BUT want that second opinion!  My BIL had to have his entire esophagus removed a couple of years ago (as far as I know, this is a very complicated, risky surgery), surgeon who did this is not a GI but is head of surgery at the hospital.  Husband has also met with him due to his own acid reflux issues.  (Both have said he is a very compassionate doctor.) It so happens that my BIL has a follow up apptmt tomorrrow, so my husband will go with him to the apptmt, give him a brief summary of what's going on and ask if he can get us a second opinion with a GI very quickly.  And am still waiting to hear back re the referral request Stephen's GP made a few weeks ago (it typically takes months to get an apptmt though )

So...  that where we stand.  I'm kinda blown away and not sure what I'm thinking now...  although I know I'm not happy and my bubble is nowhere to be seen!   :ymad:  :ack:


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## Clash

Aww...Tess I'm sorry your bubble is in hiding but it sounds like you are taking all the steps needed to make yourself and Stephen comfortable with any treatment. These visits are so much to take in, it is like information overload.:ybatty:

I hope you are able to get the second opinion quickly as I know the waiting and waiting adds it's own stress for you and probably Stephen too.

Sending hugs and support your way!!:ghug::ghug:


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## muppet

When Sarah was initially put on Remicade, we were told it was the only viable option for her, as well. At the time, she was in extremely bad shape, had just received a blood transfusion, and was inpatient. Remicade fixed her up and got her into remission before she started reacting badly to it (serum reaction) and had to go off. Now she's maintained pretty well on 6MP, Allopurinol to keep the liver problem she had in check, and 5mg of Prednisone every other day which for some reason seems to help (and keeps her ITP in check as well).

We were adamant about a second opinion from Boston but in the end she was too acute to be transferred there and time was up.

Remicade may just work for your kiddo for years and years but I wouldn't worry too much right now about it being Remicade or absolutely nothing else in the future. Even though Sarah eventually failed Remicade, the temporary relief and healing she got from it was definitely a net positive in the end in terms of her bowel health and eventual remission.


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## Farmwife

Sorry about your bubble Tess. It's probably floating in space with mine. 

I hope all goes well. Hugs:hug:


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## my little penguin

Hugs...
I agree a lot to take in.
Hope you get in to the 2nd opinion doc quick .
Fwiw mre did not show the inflammation in the other areas for DS only a scope did.
He was like your son and inflamed from end to end on his first scope.
I will say immunosuppressants by themselves have a greater risk of tcell lymphoma then remicade by itself ( none if you have never had immunosuppressants as far as all the research now but that could change ).
Personally remicade is the miracle drug for DS .


We did get a second opinion on remicade for DS but ended up starting it before our actual visit since time ran out .
Good luck


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## Tesscorm

I am coming to terms with the remicade.  It has certainly helped having gone through it, especially hearing all that good that comes from it, with so many of your kids.  

It's such a hard step to take!    As you all know, I so would have liked to try LDN and I feel like the GIs have always put obstacles/delays put in my way but, in the meantime, did nothing else.  Now, perhaps I don't have time to try anymore and have wasted a year (first time I asked his ped GI was last November!)  I feel like I should have done more to push for that but, in reality, I do know that I couldn't have done more (brain knows, heart doesn't!).  I can't change what's happened but I will always feel that there was an opportunity to try a low risk med and we didn't! :ymad:

We'll still see if we can get a second opinion quickly and will see the results of the scope but I'm not going to count on much changing!


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## imaboveitall

Oh my GOD, Tess...you and I and S and V really are in parallel lives. :shifty:
I cannot believe Stephen is at the same place as V...feeling well, looks good, but needs the scary drugs...wow.
I am so sorry to hear he is. But glad to hear his doc agrees with the Saint as far as recommendation for Remicade. Makes me feel more confident about doing it. You know what I mean. 

You know I'm here for obsessing any time you want to. :heart:


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## Mom2oneboy

((((Hugs))))) Tess!  I'm sorry!  I know how hard it is to hear the word "Remicade".  The first time it was mentioned to us it felt like the world stopped spinning.  I so didn't want to go there this early in the game.`It takes awhile to get your head wrapped around it!  The good news is that Remicade is working for a lot of people on this board....including my guy.  Whatever direction you go in, I hope you'll find peace in knowing that you have done an outstanding job of researching all the options.  Stephen is so lucky to have you as a mom!


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## imaboveitall

HEYA mom2one, I saw your post in V's thread...just sending some love your way from me :heart:


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## Johnnysmom

Sorry to hear things didn't go better.  But I do think you haven't jumped to this decision.  You have spent a lot of time researching and discussing options.  I think you are exactly right about not quite understanding the logic behind this decision.  I have come to terms with the fact that these G.I.'s treat our children based on what could happen because there is no way to predict how the disease course will run.  I know that they have spent years in practice watching people suffer before drugs like Remicade and are probably not willing to take a chance when they have seen so many bad outcomes.   LDN is somewhat unknown and although the side effects aren't nearly as serious as those with Remicade leaving the disease under-treated probably carries far greater health risks than actually taking Remicade.    

I hate that you feel rushed into this decision but you are doing  a great job.  And I know this is just part of the process we all go through to make sure we have been as responsible as we possibly can be before we make these decisions.   

Hoping that your path to treatment becomes clear and all goes well.  (((Hugs))))


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## Clash

Remicade wasn't our saving grace, except during loading doses, but the results we saw then were awesome! I'm sorry you are in this position and I know it has to be hard when you aren't seeing any symptoms. I think you are an awesome advocate for Stephen!!


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## DustyKat

Hey Tess...:hug::hug::hug:...My heart aches and breaks for you that it has come to this. Although we have never been at this same point I too understand the dread, fear and helplessness no options brings. 

When Matt was diagnosed I was in shock and everything was happening so fast. The plan was hard and fast...Prednisone, Imuran, Flagyl. Review in 6 weeks and unless there were clinical and objective markers of improvement then Humira would be applied for there and then. remission was the name of the game come hell or high water. To say my head my spinning would be an understatement, I could have been an extra in a horror movie! I didn't even question it, I think the speed at which it happened and the desire to spare him what Sarah went through put me in a bubble that even Superman couldn't penetrate. 

The MRE: It truly is a test designed to provide best imaging of the small bowel and the small bowel only. That is not to say that it doesn't pick up issues elsewhere but that is where scopes come to the fore. It is a little the same for the pill cam. I have read in the past where studies have suggested that the transit time through the stomach and duodenum is too fast and so problems in this area have the potential to be missed. 

I hope you are able to get a second opinion very soon Tess. Even if the advice is no different validation of another's opinion can ease the pain you are experiencing. :hug: 

I so know this is where you don't want to be Tess. I can pull positives out of it but the one that is half the battle over is that Stephen is willing to go down this path and being Remicade you know that compliance won't be issue. 

Sending loads and load and loads of love and healing thoughts your way Tess. :heart::ghug::heart: 

Dusty. xxx


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## Tesscorm

You're right, Dusty, even if the second opinion is just an affirmation of treatment, that will be a huge reassurance.  My husband suggested (in my mood yesterday, 'suggesting' was as far as he'd go... :lol that this GI is a specialist and that, perhaps, I should have more faith...  uhh, yeah, and the problem is that his ped GI was also a specialist at a top hospital yet, with no change in MRE, we have two extremely different treatment plans!  So, who's friggin' out to lunch?!?!?  But, no question, I always did feel that his ped GIs just had Stephen on 'hold', so am not saying that this GI is wrong.  Just wasn't ready to give in quite so easily last night! :voodoo:  

Julie - oh gosh...  will we ever obsess!!!  As _the _date approaches...  utahere:   Could it be that seeing their obsessive, maniacal moms in action  is what has caused V and S to be the stable, laid back, accepting kids they are?  :lol:

FW, MLP, Clash, Tracy, Johnnysmom, Shelley, Muppet (and EVERYONE else!) - thanks for all your encouragement!  It makes such a difference to know you're not alone in your fears, worries, etc.!  There was a bit of time last night that I thought I'm not going back to the forum!  What's the point? I haven't made anything better or changed the course of anything and have only made myself aware of all the worries, risks, etc. but...seriously?!?!? :ybatty:  It's not just the advice and knowledge, really it's the support, friendship and true understanding from everyone! :Karl:

And, where the heck is Crohnsinct with my virtual wine!?!?!? :ymad:


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## xmdmom

RTess  you wrote " that this GI is a specialist and that, perhaps, I should have more faith... uhh, yeah, and the problem is that his ped GI was also a specialist at a top hospital yet, with no change in MRE, we have two extremely different treatment plans! So, who's friggin' out to lunch?!?!? ""  I think that doctors give their best guess.  IT's hopefully an educated guess but it's still a guess as to what's best for a particular patient.  

In certain cases, there may be agreement among IBD specialists, but  in many cases, there are a variety of ways to proceed.  All I can say is aargh!


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## my little penguin

Yeah that!!!
Our 2nd opinion Gi said the same many paths to start and you still may end up in the same place - no one path is anymore right - just what works is.
That said - all the facts and studies prove remicade remains more effective longer when used early ( ie within two years of dx) so if your going there anyway I am all for using it early to give the best shot.


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## Crohn's Mom

Tess ~ I am sooo right there with you ! :ghug::ghug::ghug:

The idea of this combo therapy with Gab is killing me; but I guess we gotta do, what we gotta do right ? :ymad:

Don't you leave us !! Take a break if you need to , but dont you leave us! :heart::heart::heart::heart:


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## kimmidwife

Tess,
I am just catching up. I know it is rough to make this decision. I wish more doctors were on the ball with LDN. It has been our miracle as well as other peoples on here. I definitely agree with him getting a scope to really see what is going on. Have you shown the doctor any of the LDN studies?


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## Patricia56

I understand your distrust, fear, worry, anger, confusion.

BTDT.

After almost 7 years I can only tell you that I have had that kind of conversation (or what sounds like your description) when I am talking with a highly experienced doc who specializes in this field and who is both compassionate and detached.

On your side of the conversation it almost feels like you are talking with the wind. You know it was there, it may even have been caressing and kind but it disturbed things sometimes a lot. Now it's gone and you have nothing solid left to grasp, just the disturbance left behind.

Does that kind of describe your experience?

The docs I've had those kinds of conversations with are so far beyond competent that it took years for me to begin to appreciate the skill and depth of knowledge underlying those simple conversations and why it's so hard for them to explain themselves to you in a way that is really satisfying. "Because I know" doesn't cut it but that really is the answer.

I know I was not going to take anybody's word for anything for the longest time. What a PITA I must have been. 

He has seen so many kids that he almost doesn't have to do more than glance at the kid, the labs and the imaging studies to know what's going on, what treatment to start with and what problems to expect.

He can look at the imaging studies predict the pattern of disease for at least the short term, and he knows what treatments are most likely to work or not work in nearly every case.

He or she is operating out of experience and if you ask them to explain themselves you may get an answer that sounds like the one you got - at times contradictory, seems to suggest there are options but in the end only offers one. And they may have said the things you expected to hear about the justifications for the choices but somehow it just doesn't sit right, you're not convinced, you needed to argue or tussle or something. 

And they won't do that generally. They will answer questions, they will tell you their opinion and if/when things get dicey they will be direct and  forceful. But they are detached from the outcome and are unlikely to argue with you or defend their position vigorously. If you get to life and death stuff then you will see a different doctor but short of that you probably won't.

That's because these docs see thousands of parents just like us every year. Many of us are resistant to our new reality. A bunch have become instant doctors courtesy the internet. Some folks are just mistrustful because of past experiences with doctors and others are just generally anxious or paranoid or had too much caffeine that day.

Anyway, the ultimate control over treatment decisions is in the hands of the parents - not the docs. Because Crohn's is hard to understand and is invisible for the most part, lots of parents struggle to accept the need for medication, surgery, lab draws. They/we have trouble accepting that we need to rely on this expert doctor and trust him to tell us what needs to be done.

I am not saying these docs are perfect, don't make mistakes or shouldn't be questioned. It's just different in my experience to work with a doc with this kind of breadth and depth of experience. These two docs knew what my son's prognosis was, knew what type of meds he needed to be on and said so straightforwardly based on simple, basic information.

I wasn't ready to hear what they had to say as soon as I would have liked. And they knew that, I'm sure of it. Because they just waited me out. They knew that it was 90%+ likely that their prediction and treatment recommendations were right. But they knew it wouldn't do any good to argue with me or strive to convince me or defend their positions. So they told me what they thought and left it at that.

Ok. Enough about that.

One thing that I haven't seen mentioned about using the biologics (if they are needed) is that there is a clear advantage to starting them early - within 2 years - of diagnosis. Statistically you are much more likely to get a solid remission that lasts for a long time.

And just because you start Remicade doesn't mean you can't stop. Nothing is written in stone.

My son used Humira for about 2 1/2 years and then stopped. I believe he didn't have any problems for more than 2 years afterwards because he had achieved mucosal healing thanks to Humira. And even with his recent flare it was very, very mild and has responded to a slight increase in his Methotrexate.

I can't guarantee this will be your son's outcome but I completely and totally agree that you need to stop the inflammation now. You do not want an abscess or fistula or permanent stricturing due to that continuing inflammation.

And those are the possible, I actually think likely, results if that is left to simmer long enough. How long? Don't know, for some people it might be decades. For others it might be months. That's the crappy thing - you don't know.

Hugs


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## momoftwinboys

Tess...these med choices are no fun.  Sorry you and your family are dealing with it.

I think you know we chose the remicade option and so far so good (knock on wood).

Part of our decision was based on getting his GI tract healed before there was time to do permanent damage.  I really do believe there are going to be great breakthroughs in the not too distant future and if we can just get our kiddos there relatively healthy and at their full growth potential, the risks will be worth it.

Good Luck with whatever path you guys choose.  Thinking of you.


----------



## crohnsinct

Aw Tess so sorry I wasn't around but rest assured I was having that wine.  Needed to take breaks to deal with some other stressors for a while.

The biologics have gotten a real bad rap on the scare front.  Probably due to the "drug of last resort" reputation from years ago.  Because they were drug of last resort they were automatically seen as the dangerous and scary ones.  Well, hanging out around here has pretty much shown me they all suck!  Imuran and potential liver issues, Methotrexate and potential side effects, cancer risks etc etc etc. 

I am glad so much positive information is coming out now about Remicade.  

I have said this before, Remicade is an easy dosing drug, great for compliance, little to no side effects, few risks (o.k. yeah the few it has are scary but slight) and you get the added benefit of frequent blood results...great for us control freak moms.  

Plus, there are so many treatments in the pipeline, who knows, he may only be on it for a year or two before we are all on to something else.   

This is all hitting you at an incredibly stressful time with all you are going through and then oh yeah the holidays!!!!  I am sorry you are having to make this decision now and hope that the scopes and second opinion help ease things for you. 

How is your dad?


----------



## Tesscorm

_OMG, just wrote out a reply to all of the above and lost it!!! :ymad:  :ymad:_

_(Sorrry, I couldn't respond last night - had to swich from concerned mother to concerned daughter! ) _

You guys are incredible!!!  I can't tell you how much I've been reassured after reading all your comments on remicade!  And, Patricia, you are so bang on with so many of your comments!!!  It's like you were there with me - at and after - the appointment!!  
I'm almost positive we'll be going with the remicade.  Stephen is very concerned about the risk of surgery and, given his age, I won't try to change his opinion.  I will give him my opinion and I'll ask lots of questions at apptmts so I can be sure he's getting as much info as possible, after that...  I'll respect his choice.

Husband met with surgeon this morning and his comments were similar to many of yours - different GIs = different opinions, no right or wrong, be cautious with these drugs but weigh the risk of using them with the risk of not :ybatty:, believes we have time for a second opinion and encourages this, unfortunately, his hospital does not have a crohns specialist and he believes, if we're going for a second opinion, we should get one from a GI with that specialty.  So, will follow up with GP re his referral (so far hadn't heard back yet).

Kim - yes, gave GI studies, articles, all I could find.  He may have read it but my inclination is to think not. 

Crohnsinct - any wine *LEFT*?!?!?   But, I think you're right in that this decision re the meds is coming at me with so much else going on! :ywow:  It's like my 'emotional skin' has been rubbed raw and any little scratch is like    - hard to keep things in perspective!

Dad's surgery went well, he was woozy but fine last night, now we wait for the healing...  which will, hopefully, occur without complication!


So, for now, we're on 'hold' on all fronts!   I can feel my bubble trying to rebuild...  even if it only lasts over the holidays!!! :ghug:


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## Patricia56

I think the biggest thing to stress with your son is that if he starts this course of treatment he must commit to doing it on schedule regardless of what else might be happening in his life.

For someone his age this may be the biggest problem to doing Remicade and why so many like Humira. Humira they can do at home without any real interruption in their regular activities. They do have to keep track of when they do it (every other week) but it is usually delivered by mail order drug companies that call at least once every 3 months about refilling the rx.

I don't know what the arrangement is for the remicade there but if it is reliant on Stephen making the appointment himself with no mechanism in place for the system to remind him then I would consider suggesting that Humira might actually be a better choice.

And yes I know that you could remind him but my advice is that you back off of this role (managing meds and making appointments specifically).

It's my experience, with my son who has been on medications his whole life and has been responsible (mostly) for the daily management of his meds for the last year, that it is better for them to do it sooner rather than later. This allows them to screw up while there is still a safety net in place to help them get back on track.


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## my little penguin

As far as remembering appts for us gi office schedules first three at once since they have to be so close together for induction.
Then your last induction appt they actually schedule your next infusion before you leave the hospital so no hiccups or forgetting.


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## Patricia56

I wanted to say something about the pill cam.

Badger had it done twice.

Once it was somewhat helpful.

Once it was a complete waste of time and I later discovered that he had extensive stricturing so we dodged the "stuck somewhere" bullet but I'm guessing it was a close thing.

There a couple problems with the pill cam.

1. It only sees what it is pointed at directly.

If the ulcer is on the side the camera is pointed then great, the camera records that ulcer and you know it was there. If the camera is pointed a different direction? No ulcer as far as everyone is concerned.

2. It only sees what it is pointed at for as long as it is pointed in that direction.

During Badger's first pill cam it transited most of the small bowel so fast that they saw nothing but a blur. Not helpful. During his second pill cam the thing stopped and didn't move for 6 hours (I am figuring this is when we dodged the "stuck and has to be removed by surgery" bullet). So they got 6 hours of the same view in the upper part of the small intestines. Since the pill cam was only good for 7 1/2 hours I think (maybe 8) and it had already taken almost 2 hours to reach that point they got no pictures of the small intestines below that once the pill cam broke free.

Given the availability of MRE, the risk of obstruction and need for surgery to remove the thing, these drawbacks make me wonder why anybody uses it.


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## imaboveitall

Re: pillcam. Patricia, the patency cap eliminates the fear of it getting stuck. Not sure why you are unfamiliar with the patency cap, but I wouldn't allow a pillcam without it. So true that it will have variable results depending on motility, positioning etc but it is still an excellent tool for sm bowel visualization even in light of those limitations.

TESS,
I heard from The Saint this morning. I'll post details in V's thread.
She and Stephen are in so much the same position: years on EN held this moment off as long as we could and now here it is.
I am glad to know you as we are in nearly identical places. Sadly. :voodoo:


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## Clash

I know when we went through the process of starting remicade we had the option to sign up for an appt reminder through Remicade. The lady stated that we could enter up to 3 numbers and they send a text and voice reminder a week out and the day before.

I think we are going to utilize it for C shortly, as it is right now we choose to drive quite a way to his infusions, when it is turned over to him we will find a place more convinient to where he decides to attend college. I do worry that compliancy may be come an issue but so far C has liked the downtime of the infusion.


----------



## Patricia56

My comments about the pill cam were a response to Tesscorm's concern that the doctor didn't feel it would add anything to what was already known.

If I had to guess, part of the reason for that kind of remark might be that he'd had a few patients whose pill cam results looked a lot like Badger's. 

In Badger's case it was a waste of money, time and resources.

Even with the patency cap the Pill Cam carries a 2.6% risk of capsule retention in people with Crohn's according to the Pill Cam people if I'm reading their literature correctly.

But that's not really the point.

I think the patency cap is a great idea.

I also think it is not a guarantee  - especially given the anatomy of the intestines, particularly in a kid with active CD - that you won't have problems.

But mostly my point was that there is NO guarantee that you will get usable results.

The patency cap was not available at the time we did the pill cam but it's my understanding that, except for that innovation, nothing much else has changed.

Am I misinformed? It's happened before.


----------



## kimmidwife

Tess,
Just checking in and wanted to say I am thinking of you guys!


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## izzi'smom

Thinking of you today, TEss!
We also scheduled our next Remi infusion before we left...our infusion unit appts filled up fast.


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## awmom

Tess, I completely understand how difficult this these decisions can be.  It's almost like you want to exhaust all other options before going to the big guns because otherwise you will never know whether or no they might have worked.  Something similar happened with us. Started with entocort, then prednisone, then 6mp, did flagyl, LDN, several diets, then remicade, and now we are looking at surgery to remove a stricture.  Saw a doc yesterday at Boston Children's who says perhaps if we had STARTED with remicade we could have avoided the surgery and many of the troubles my son has gone through.  The truth is one never knows, and every time a new, more powerful med was recommended, I fretted and worried and the came to accept it and realized that it was ok.  But i know it isnt easy. So know that send all my understanding and best wishes.  Keep us posted.


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## Tesscorm

Thanks awmom,

Yes, that's it exactly...  the meds are such a tough decision to accept at any time but I exhausting all other options gives us comfort that we have done all we can.  But, as you say, the risk is that they don't work and then we find further damage.  And, really, it's so easy to say in hindsight 'oh I should have...' but, in reality, we don't know what those _other _decisions would have brought had they been made at that time!  (did that make sense?? :ywow  Thanks for sharing!!  I do appreciate it! :ghug:


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## imaboveitall

Yo TESS...V's first Remicade infusion is Dec 27th. :shifty: :ywow: :voodoo:


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## izzi'smom

Thinking of you ladies...and remembering how difficult these decisions are


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## Tesscorm

EN - It's been my lifeline, thinking for all this time that it's been Stephen's saving grace, I think I'll be the one going through withdrawal!!  

Our plans for EN going forward are...  GI believes the only benefit he's getting from it is as a nutritional supplement and doesn't feel strongly one way or the other if he continues...  I still believe it has helped keep Stephen stable for all this time (while it didn't rid him of all inflammation, he hasn't worsened either...) and, being a picky eater, has given him his nutrients!  Stephen is completely happy to continue, says he feels and looks better than he ever did without the formula and prefers the NG tube as he doesn't want to drink the shakes.  So, our plan is to keep going with the same formula, same dosage as long as I can keep getting prescriptions for it (I believe GI will prescribe) (it would cost a fortune without coverage - we'll deal with that when it happens...)

Now, just a question for you guys...  given our new circumstances, I'm thinking of skipping the formula while we're away  (would be so much easier if I didn't need a doctors note and to carry all the formula and the pump and bags and tubes)...  or my back-up, do I pack some boost/ensure just in case he's not feeling well (and can replace a few meals with those shakes)???  Do you think I'd still need a doctors note to carry Boost/Ensure in our suitcases?


----------



## Patricia56

Can you have some shipped to where you are going? Or can you take doctor's rx with you and get it there? or have doctor's office arrange for it from med supply where you're going?


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## Tesscorm

I think 'nope' to all your questions 

We're going on a cruise, so I think having it shipped directly to the ship would be complicated and with lots of room for error (us arriving but not finding the formula and equipment)...

Unfortunately, we arrive in Ft. Lauderdale at midnight on the 29th and the cruise leaves the morning of the 30th...  I'd considered buying some Boost/Ensure in Florida (to bypass customs and security issues) but it's unlikely I'll have the opportunity due to time constraints.

I know cruise ships have strict policies about bringing your own drinks (including non-alcoholic!  - we had to buy a 'water' package! :yfaint on board but I was planning on taking a copy of his discharge papers showing his diagnosis and explaining the need for the nutritional supplement - I really don't expect the cruise line will have a problem with THAT...  if they did, I'd happily be using Mary's vice grips on that gatekeeper!! :lol:


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## Patricia56

I wonder if the cruise line medical person (doctor or nurse) could help arrange for you to have at least some boost/ensure available on the ship.

Might be worth a call but even if they promise it I personally wouldn't count on it until I saw the little packages myself.

You know, they might already have some laid in for passengers with bad seasickness or whatever.


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## Patricia56

:whistleinnocently:Now that I think of it, I'd be happy to bring you some Boost or Ensure as part of an all expenses paid trip to get that vital stuff to you....


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## Farmwife

:ymad:Back off Patricia56 ,:ymad:

We've already been through this.:eek2: Some are going in the luggage and some will stow away in a rescue boat. :confused2:One lucky soul will be able to be the personal nurse.:hug: She hasn't yet announced who that is yet?

Remember Tess dear, how I've always tried to offer words of encouragement.:ghug:


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## Patricia56

Hey, nothing says there's no room for a backpacker on this little jaunt.:ycool:

Unless you're the one who'd like to be the ... donkey?

:kissgrits:

:arghmatey_ani:

As for earning one's way, I think we can all agree that I offer many excellent and practical suggestions (see the immediately preceeding posts) and I am currently experiencing an astonishing surge of humor that is almost always socially acceptable in content.

:biggrin:


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## Farmwife

True, true....but my humor was here before you!:hug:

If we were unionized I would have seniority.:tongue:

:rof:


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## Patricia56

If we were unionized I'm pretty sure seniority is not what you would have.  :tongue:

As for your humor, we all knew it was stale, no need to make a spectacle of yourself about it. Some things just don't age well.:yrolleyes:

I think you may be in need of the following information on text message shortcuts for seniors. You did say you have seniority yes?:jokercolor:

BFF: Best Friend Fainted
BTW: Bring The Wheelchair
BYOT: Bring Your Own Teeth
CBM: Covered By Medicare
CGU: Can't get up
CUATSC: See You At The Senior Center
FWB: Friend With Beta Blockers
FWIW: Forgot Where I Was
FYI: Found Your Insulin
GGPBL: Gotta Go, Pacemaker Battery Low!
IMHO: Is My Hearing-Aid On?
LMDO: Laughing My Dentures Out
LOL: Living On Lipitor
LWO: Lawrence Welk's On
OMMR: On My Massage Recliner
ROFL... CGU: Rolling On The Floor Laughing... And Can't Get Up
TTYL: Talk To You Louder
WAITT: Who Am I Talking To?
WWNO: Walker Wheels Need Oil​
illowfight:     :headbang:


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## Crohn's Mom

Tess, just my opinion, but I would think backing off and just bringing some Boost/Ensure with you all at this point would be sufficient.  And also, I don't see the cruise line guidelines taking issue with this as it's not exactly "alcohol" 

I say, relax, take a break and just bring the supplements along ~again, just my opinion.


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## Crohn's Mom

Woman...
I wish I could come meet you and bring you the boost !! 



> Unfortunately, we arrive in Ft. Lauderdale at midnight on the 29th and the cruise leaves the morning of the 30th... I'd considered buying some Boost/Ensure in Florida (to bypass customs and security issues) but it's unlikely I'll have the opportunity due to time constraints.


Uggg...I can't believe how close you will be ( a few hours) ! I so wish we could meet up and I could give you a gigantic, squishy hug !! :hug:


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## Patricia56

I'm with Crohn's Mom.

Take the minimum. Unless you're going to be gone a month just take along what you can in supplements.

I would still check with the cruise line about whether they already carry it onboard though so you don't have to lug it along with you.


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## DustyKat

Hey Tess, 

I agree that is worthwhile taking some boost/ensure along with you.  Can you contact the cruise line company and discuss it with them? 

You know I have always wondered how things might have been for Sarah if she had been given the chance to use medication, diet, anything. Can I fault the outcome she has had with surgery thus far? 
Then when Matt was diagnosed I jumped at the chance to use medication. Despite Sarah's positive outcome I still wanted more than anything for him to avoid what she went through and I was more than willing to hit it hard and fast. Given the opportunity it didn't work anyway. 

What I am saying Tess is if I had time, and not our personal previous experience, I too would be uncertain of which path to take. But I did not have that time, I was not looking at a child that 'looked well', that had energy and had weight on their bones. In so many ways the choices were taken out of my hands and I can't help but think that although the choice given is not what one would wish it did make it easier. I did not have to weigh the pros and cons of one treatment over another or the combining of this with that. I can only look with admiration and awe at the majority of you that do indeed have or have to face such decisions. :ghug: 

Dusty. :heart:


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## my little penguin

Hugs....
Tess- we second guessed our decision on Remicade even they day of the infusion.
4 months later - it is the best thing to happen.
In his case we had tried it ALL ...
Glad you are moving forward and I hope you see wonderful results on the next mre as proof the remicade is working.


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## Tesscorm

:rof: LMAO :rof: at Patricia and FW!!!  Wish I could take you both along!!  _Shhhh, I believe Crohnsinct took on the personal nurse role before I'd even finished writing the cruise details!_  :lol:  But, get that rescue boat gassed up!   What will I do without you all for one week?!?!?  :yfaint:  Oh yeah...  tan, eat, drink... :facepalm:  

I'll try to call the ship re the boost...  I really can't imagine the ship giving me a hard time bringing the EN but I'm questioning more the customs/security issues.  If our flight was arriving a bit earlier, I would just buy it there - it would be so much simpler!!  But, in any case, as you all said...  probably a good idea to just take some along!  We're all well familiar with Murphy's Law!!!  ...better to have it and not need it, then to need it and not have it!

Dusty, MLP...  thanks! :heart:

Unfortunately, the referral sent by the GP was turned down!  Guess they can do that???    To start again with another referral will be almost impossible to schedule before the end of January   I have one more shot...  have a fairly close friend who is one of six or seven siblings and, unbelievably, their jobs are - heart surgeon, brain surgeon, gynocologist, pediatrician and one GP!!!  (We teased my friend that he was the black sheep by being a lowly accountant!! :lol  While is there no GI amoungst his family, he has offered to ask his siblings for referrals if we ever needed...  but, really I am coming to terms with the remicade, the more I've read, the more I am worrying about the disease progressing, etc. so not even sure if the second opinion will really make much difference???


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## Sascot

Hi, I seem to have missed loads!  I am glad you are managing to come to terms with the Remicade.  The worry of silent progression has also made me decide to try the 6mp. Lets hope both work well for our kiddies!!
Hope your dad's recovery is going to plan and he gets better soon.
Enjoy your cruise - just love cruising!!


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## Patricia56

Well Crohnsinct can be dealt with you know. I never let a wimpy nurse stand in my way.:arghmatey_ani::arghmatey_ani::grr1d:

I wonder if any of the duty free shops in the airport would have ensure. It would cost a fortune I bet.

If you pack it in a suitcase you won't have a problem except you may exceed your weight limit.


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## DustyKat

Unfortunately Tess a referral can be turned down outside of the hospital system.  

If after reading the information provided the specialist doesn't feel they can offer you anything further they can say there is no point in going through with the referral. 

Dusty. :hug:


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## Tesscorm

I think it was due more to time limitations. The GPs secretary said they'd asked if he already had a GI and, if yes, couldn't do just an 'opinion'. She suggested I call directly and be the 'squeaky wheel' and that they might respond?? . I may still do that??? But, to be honest, I'm feeling a bit worn down after so many battles lately! Between my fibroid issues, getting the U.S. Mre, pushing to get MREs reviewed, a problem I had renewing the last EN renewal, my dad, Stephens univ apps must be done now, prepping for Christmas and the cruise, the recent upsurge in research on remicade and LDN, then the news from the last apptmt :ybatty:...  I'm not sure I have anymore loud squeaks left!  :lol:  I don't ever want to feel I hvnt turned every stone for Stephen but my fear of worsening disease is beginning to really outweigh my fear of remicade.  To make the second opinion valuable would mean getting it scheduled bfr remicade begins and that's a narrow window (with the odds against me given the wait times for apptmts - also I hv my surgery on Jan 17, further narrowing that window!) So, after this long explanation...  :lol: I'm just not sure I can be a squeaky wheel again!  If my friend can do something, that will be great, if not...  I may have to accept 'second opinion defeat'! . (Then again, this may change after my third cup of coffee Monday morning! )


----------



## my little penguin

More hugs...
We had a second opinion on the remicade but like you we just ran out of time and decided in DS case enough damage was enough- still went to the second opinion place after starting remicade but it was more of a yep we agree with doc #1 sorta thing.
Hope your new year calms down

I am going in the carry on since I need a break too.


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## Tesscorm

Yes, I remember that's what happened with you...  And hv thought that I'm in the same situation re the second opinion. 

:lol:  I think I need one of those old steamer trunks!!  But, now I won't have to worry abt being without you guys for a week! :thumright:


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## DustyKat

Oh Tess...:hug::hug::hug:...you are such a wonderful Mum and advocate for your boy.  He is so very lucky to have you in his corner and I don't see a single failure anywhere! 

:hang: Mum! You are champion! 

Dusty. :heart:


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## Farmwife

Hang in there Tess!

:frown:I'll probably have to stay on dry land. knowing how things go...I come on board and the ship will hit a freak iceberg.:ack:


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## Sascot

I am beginning to feel there's not much fight in me left either.  Whatever happens, you can be confident knowing you really did try your best!  You've been a fantastic mom and daughter!


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## Catherine

Wishing you all the best the decision.

When know you that remicide will not be approved for your child, its easy decision to say I have no doubts about remicide being a great treatment and way to go forward and get this bloody disease under control.

Please feel free to remind me of this statement if appoval process for remicide changes in Australia and I exactly have to make a decision.


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## kimmidwife

Tess,
Definitly call the cruise line they may be willing to arrange to have the formula on board. The medical aboard these ships is pretty incredible. I wish you guys weren't coming in at midnight I would so drive the formula to you. My problem is I don't drive distances at night. ( I have night vision issues) when do you guys get back from the cruise? Maybe we can meet up?


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## Tesscorm

I just need to vent to the only people who will really understand!! :ymad:  (and my poor husband is tired of nodding, agreeing and saying 'okay, just relax'!  Which, by the way, I'm tired of hearing and does nothing to relax me! :lol 

So, a second opinion is just not working out...  but my friend's SIL works at the same hospital as Stephen's GI and her comments about him were 'He really is the best!  If you have him as your GI, you absolutely do not need a second opinion!!  His recommendation for remicade is the correct protocol.'  Okay, with a recommendation like that, I certainly felt better and accepted that a second opinion was going to be so difficult to get and really didn't seem to be as necessary.

So, with the holidays coming up and then our trip, I followed up today with his assistant re possible scope date, etc. as he'd said he wanted to do the scopes at the beginning/mid Jan.  Now she says, Stephen's on a cancellation list but, worst case, it may not happen until February.  I totally understand this and certainly don't expect him to bump anyone else, I'm grateful and appreciate that he's put Stephen on the cancellation list right away...  What I'm pissed at is that these GIs (at least the two I've dealt with) are more friggin worried about following protocol than doing what's right!!! :ymad:  :voodoo:  :ymad:

Really, I've accepted the very likely need for remicade, so this isn't about me not being able to let go of LDN, HOWEVER...

Since October, this guy has said 'oh, he needs remicade, something strong to take down inflammation!'  (But _said _he'd give LDN if I wanted...)

When I asked for the LDN prescription, he scheduled another apptmt to follow up again (with the new MRE), now says 'oh no, I wouldn't feel right giving LDN, he really needs the remicade and we don't want to leave it as we don't know when the tipping point will be for further complications.'  

Okay, panic sets in, I accept that he needs remicade, let's get treatment going!

Reality - yes, there's certainly concern with inflammation, LDN perhaps isn't enough but, while we're procrastinating since OCTOBER, let's do ABSOLUTELY NOTHING! because, it seems, according to 'protocol', doing NOTHING for months is a much BETTER decision rather than trying something with little side effects while waiting for MREs, reviews, apptmts, scopes, insurance schedules, etc.!!!  If he'd given me the LDN in October, we would know by the time of the scopes if the LDN was working and if not, we could still continue on with remicade.

To me, this is not a great doctor!!!  Yes, he may be the best in the GI field and extremely knowledgeable but, he's obviously incapable of thinking outside the box!  So far, with absolutely no training, I could have done his job!  I (with all your help) could see that the MREs showed inflammation and I could decide to go top down and be relatively sure it would work...  side effects??  Oh well, out of my control... :ymad: :ymad:

Ughh!!!!  I'd sell my soul to be rich as a Saudi prince and buy and staff my own GI clinic!!  :lol:  OMG, now isn't that the ultimate control freak dream or what?!?!? :lol:


----------



## muppet

Are they waiting on the scopes before they start Remicade? Why can't they give the first infusion immediately if they've already decided that's what he's getting?


----------



## Tesscorm

When Stephen was diagnosed (May 2011), scopes showed inflammation in his stomach, duodenum, colon and TI. Since then, three MREs have shown inflammation only in his TI, distal ileum (20-30 cm) and small patch(es) in his jejunum with some stricturing, etc (one or two of the MREs have noted that colon and stomach are unremarkable). But based on the scopes, GI feels that there's a chance there is still inflammation in those areas that the MREs may have missed so he wants to confirm with up to date scopes before starting on remicade. 

He may also have understood that I would not feel comfortable going to remicade given that his MREs have shown no worsening in the last 12 months and his labs were better now than since diagnosis so the scopes would be further confirmation of the need for remicade. 

So, I do understand the reason for 'some' of the delays but don't understand why 'something' (LDN or even 5-asa) wouldn't have been used while waiting for all these steps...  Even if there was only a small chance of success, there wud have been no downside!


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## muppet

Given the extended wait I agree. I guess they don't want something else to heal him up and give them an inaccurate picture of the progress after Remicade or the severity of his illness now.

In that case, though, they damned well ought to push it up, surely there can't be that long a list of diagnosed, totally unmedicated patients waiting for scopes? Bump somebody else, chumps.

I'd call every day about the cancellation list, explaining-in long detail-the reason for my concern, until they were so sick of me they'd be begging the doctor to pull some strings.


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## Tesscorm

:thumright:  I'm with you but I've already done so much pushing with this GI that I'm starting to feel embarrassed at all the pushing!  Stephen's only been with him since October and, so far, we've had two apptmts, I've dropped in twice to leave films of old MREs for his review, told him I'd get my own MRE in the U.S. since it would take too long for his and had that film and report sent to him, he had his radiologist review the films and pushed up the review by a month (according to the wait time the assistant had anticipated) because I didn't want to wait for the review and had sent him an email with specific questions re the results and had requested the prescription for LDN while we waited for the review, few other emails and calls, etc., etc. ...  I can't be sure but I'm not sure that other patients get two appts, MRE reviews and a scope within 3 months...  and he has been patient answering questions...  and, I don't want to reach a point where he says... 'okay, I just don't think I can treat your son to your satisfaction.  I think you need to find a new GI.'


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## muppet

I have no shame when it comes to pushing specialists. I think that a few prominent Audiologists in the Northeast may have my picture on their office walls with "DO NOT ADMIT" written on it.


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## my little penguin

Hugs ... Tess 
I have found everything in Gi land is hurry up make decision then wait...
You are correct they need to know what his insides look like remicade hence the mre .
That fact he was scoped over a year ago almost two by time you get to start remicade is another issue .
He will still need tb tests , ideally get titers on vaccinations including chicken pox so he can get whatever shots he needs now .
DS went from scope to remicade in 3 months but that was with a drug failure (mtx)in between.
Once the decision was made to switch to remicade it was all of about two weeks since that was the first opening at the infusion clinic here .
Doc also knew DS was pred dependent at that time so the longer the wait the longer the pred since we could not wean him.
5asa are useless IMO DS takes asacol soon to be taken off in march since we don't know for sure that it is not helping a tiny bit where your sons disease would need a pentasa or something similar but honestly if you see inflammation on the mre the 5asa probably won't touch it.
I guess if he was more symptomatic they would push faster but given the inflammation seems to be there but slow i think the Gi probably feels they have time on their side but not too much.
I know the health care is different so maybe that is it.
Mre take about 2-3 weeks to get non urgent one and scopes about a week maybe a month when your not dx.
Larger go to hospitals that see patients from all over the us two months or more.
Only the sickest of the sick go there
I wish your scope could be sooner 
I know it's frustrating btdt. 
We are here for you


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## muppet

Time release ASA may be useless due to the location of his inflammation but Sulfasalazine has a chance of helping. Not a great one, though. They're not useless for me. 30 years of decent control of my condition without ever switching meds, but my disease is all in my colon.


----------



## Patricia56

It sounds frustrating.

I wrote this big long thing but I erased it and I am just going to tell you what I think you should do.

You should write out what you want to have happen and your reasoning. And you should FAX and e-mail it to the nurse with a request that the GI call you to discuss it.

This is what, in your shoes, I would put in the FAX because I think it would be helpful to the GI to see the sequence of events and decisions. I think he has tried to please you but also tried to do what he thinks best. Those two things have not been the same and so you are left with a bit of a mess. Obviously I will not have all the facts/sequence correct but I hope you will get the general idea.

1. at the October XX appt I asked for LDN - deferred pending MRE results

2. At Nov XX appt MRE showed extensive inflammation; recommended scopes (Jan) then remicade. I needed time to discuss with husband.

3. Dec. XX I contacted nurse blahblah and agreed to scopes/Remicade. Soonest avail. scopes February; S. on cancellation list.

4. I want to start Remicade now before scopes or have scopes done urgent/emergent so Remicade can be started immediately. Having accepted need for this treatment I want to move forward. S. will have gone for 4 months (Oct. to Feb) without treatment if we wait to scope in Feb.

I can be reached at 12323232132

Thank you for your understanding and excellent care of my son.


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## muppet

Yep, this sounds good. Then keep on the GI and ask him to confirm receipt and that he's seen it.

Keep it bulletted and brief or else he'll skim it.


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## Patricia56

Forgot to say that you should be as telegraphic as possible in your communication. It's taken me several years to even begin to get the style down but this is a pretty good example.


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## Patricia56

And you need to take care of things on your end. Has he been immunized against chicken pox or had a titer drawn? Has he had a TB test? Call GI's office and ask them if he needs TB and chest xray or just TB.

Find out about the infusion center and how to make arrangements for that. Do you have to books weeks in advance? what hours does it run? Anything else that's important.


----------



## Patricia56

> Really, I've accepted the very likely need for remicade, so this isn't about me not being able to let go of LDN, HOWEVER...


Very likely?

It sounds like you _are_ holding on to wanting to try LDN. You might want to consider acknowledging that if it's true and accepting that it's just not in the cards for now. Remember that Remicade does not have to be forever and LDN may be an option in the future.

Unfortunately it sounds like you don't have a lot of choices and this GI has been very responsive, overall, to your requests.

I wouldn't compare yourself to the demands of other families of patients. It's not your job to take care of their kids. It's theirs. You are advocating for your son and as long as you are being reasonable and respectful you have nothing to apologize for.


----------



## Tesscorm

Thanks for the great advice!!!  I won't be able to use it right now (ie Patricia's sample 'email' points)... GI clinic closes today until Jan. 7 but, who knows where things will stand on Jan. 7...

As for vaccinations, yes, GI told me to check with his GP.  Am in the process of doing so...  



> It sounds like you are holding on to wanting to try LDN.


  I have accepted that remicade will _likely _be needed, albeit, grudgingly ('likely' because while we are waiting on scope result, I think the GI is set on remicade).  But, if I had the chance to try LDN 'safely', I would absolutely prefer that!  If given the chance to use a low risk drug to successfully treat the disease, who wouldn't go for that?!?!?  But, as using LDN (or the any of the 5-ASAs) is a gamble, I can't take that risk on Stephen's behalf.  But, what I'm pissed about is that I started asking for LDN last November!!!  His ped GI, adult GI and a 'fill-in' GI all said no due to their belief of it's ineffectiveness but then did NOTHING!  So, LDN is ineffective but doing NOTHING is less ineffective?!?  That's what's made me angry and still makes me angry!  The LDN trial showed its effectiveness in 3 months, we could have attempted this four times over and be no worse off.  But, now...  if time is running out, we may not have the luxury to 'try' and these GIs took away the windows of opportunity for no good reason.  It's never been a case where I've refused treatment in place of wanting LDN, what I wanted was LDN while we continued EN (as per GI instructions) to see if any positive results came from trying...

And, yes, I do agree that the GI has been responsive...  and I do appreciate that, but still feel that he and the ped GI simply stuck with 'protocol' without considering if there was an opportunity to try something outside of protocol without taking on unreasonable risk...


----------



## Tesscorm

MLP - re scheduling MREs, etc. - we do have lots of delays here!   When we went to Stephen's apptmt in Oct and I requested an up to date MRE, the first available would have been in 4 months!  That's why I went to the U.S. to have one done (and then GI's assistant had told me it would take 6 weeks to just have the film reviewed by their radiologist!).  As for scopes, I'm not sure how long that typically takes...  Stephen's was done while he was in the hospital for diagnosis.  His ped GI never mentioned a repeat scope and when I asked the 'fill-in' ped how often I should expect Stephen to be scoped, his answer was every few years or as symptoms demanded...  so, this is the first time I'm 'waiting' to schedule a scope - given the typical delays in Canada, approx. 6 weeks didn't seem like a long time to wait???  I guess that's sad that our expectations are so low here :redface:

How often do you think scopes should be done??  I didn't think anything was wrong in Stephen not having one since diagnosis???


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## my little penguin

Scopes 
Adults typically yearly ....cancer screening disease etc
Kids range from yearly to every 8 years ...
Typical 2-3 years when everything is good


----------



## kimmidwife

Hi Tess,
 Oh my goodness I hear your pain. It really stinks all this hurry up and wait attitude ( sounds like the military all over again). Patricia's advice is a good one. I can't believe they close the GI clinic for almost three weeks. That is insane that would never happen in the USA. I wish I had some more advice but none at the moment hang in there!


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## Sascot

I can totally understand your rant!  I have every sympathy - it is unbelievable that they would leave Stephen with nothing rather than try a drug that has so few listed side effects and has had studies done in paediatrics and adults.
I felt like that with Amy as well - they wanted to do the MRI and for her to see the surgeon, but were perfectly willing to let her suffer daily pain, without trying anything "out of the box" or actually anything in the box either.  We are also having the same problem with my mom!
I am sorry you are having to deal with this, feel free to rant all you want.  You will really be needing the cruise!


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## Patricia56

Scopes -

Badger had one at diagnosis 2006
one by GI Jerk 2007 with NO biopsies taken
One by GI we love 2008 only because I asked for it to see if he was in good remission on Humira. He was.

None since and none planned until he hits 8 yrs from diagnosis when our gi says he should have a screening scope. That would be 2014.

Our GI appears to think that scopes are to be avoided unless absolutely necessary. I agree, especially when a kid has worst/most disease in small intestine which cannot really be accessed or visualized by a scope.


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## muppet

I think that's one of few cases where they can/should be avoided, personally. My disease and my daughter's is all in the colon. Scopes are great for keeping tabs on the effectiveness of our regimens. An 8 year blind spot in our circumstances would make me apoplectic.


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## imaboveitall

TESS :heart:
That is just nuts, him not starting some lower tier drugs while waiting.
The Saint started Flagyl, upped pred and is trying to get ins auth for Lialda, all while awaiting Remicade (Dec 27).

I know you must be livid.
If the doc is of the belief Stephen needs Remicade based upon MRE, what will waiting for scopes change?
And as you know if his sm bowel is a mess like V's, scopes are useless.


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## Catherine

Sarah repeat scope is planned for mid year which will be 18 months after dx.  Regular scope according to our gi are after 10 year of imflammation which by their best guess timing would be 6 years from now.


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## imaboveitall

Catherine, old V was scoped yearly until this year.
Always normal. "Minimal" inflammation found here or there. Nothing to indicate Crohn's.
So last year the pillcam was done, and a scope also.
This year, ONLY pillcam as there's no evidence disease has moved to colon and pillcam shows everything but.
Docs who do these scopes and labs and no further imaging and call a kid in remission are imbeciles.
One need only read these forums to know that.


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## awmom

It's so difficult to wait patiently when you know that there is a problem that needs help NOW and there are meds that might tide him through.  Something similar happened to us because our doc left and we had to wait until the new one came on board (months), and then for months after we KNEW that his current meds were not working.  At that time we just did what we could with diet/supplements, which might have helped, but it was certainly not enough.  You are doing all the right things, including RANTING!!! I hope things and time move quickly for you from here on out.


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## Farmwife

Sorry my friend no real advice, just hugs through the forum!


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## Catherine

Understand completely what your saying about scopies.  My understanding is in our case that repeat scope would have been followed by a mri.

Sarah now only has small disease so her repeat scope would most likely have been visually clear anyway.


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## DustyKat

Oh man Tess...:ghug::ghug::ghug: 

I so hate that you are going through all this.  I hear your fear and frustration and can only hope that soon the feelings won't be so overwhelming. :heart: 

Sarah and Matt have not yet had a repeat scopes. IIRC the 8-10 years was stated. 

You are in my thoughts Tess, :hug:
Dusty. xxx


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## Tesscorm

Thanks Dusty...  Just doing daily flip flops...  one day, given what I was told about the GI, I'm confident in his assessment, comfortable and really ready to move ahead with remicade, etc., etc.,; the next, I'm thinking WTF, even if he's brilliant in his research, has made tons of discoveries re genetics, blah, blah, blah that doesn't mean he doesn't have blinders on!  Because, truly what I said somewhere above, any one of us could have done what he's done with Stephen so far...  yep, inflammation in MRE, yep, remicade is known to fix that - Voila, a guru has spoken! :lol:  You know, the difference between being 'book smart' and 'street smart'...  but, here's the flip...  do I really want 'street smart' when we're dealing with Stephen's health?  :ywow:  

And, then there's the question if I'm the one with blinders on... am I really being realistic in questioning any of this or is it just my emotional parental fear of Stephen starting remicade???

Ah well, as we're away and the clinic's closed until Jan 7, I've got lots of time to mull this over


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## izzi'smom

First off, hugs, mama! The flip flop is unrelenting, especially when you have time to consider it. Don't forget that we make the best choices with the information that we have...and you have absolutely no way to predict the future. 
I like Patricia's letter...quick, to the point leaving no question. 
Also, while Izz's GI often vents to me about parents, he assures me that my PITA ways are appreciated-I come backed up with information, studies, and out of the box ideas that he may not have considered/researched. Just because he always treats x disease with abc doesn't mean that he isn't willing to try 123. 
So no feeling bad...it's your son's care, and if you feel something more should be done, get on it, mama! If I didn't have a doc who took my opinion regarding treatment into serious consideration, I would consider finding a new one. (I am far too pushy to be quieted. Ever. :ycool:


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## DustyKat

DustyKat said:


> Oh man Tess...:ghug::ghug::ghug:
> 
> I so hate that you are going through all this.  I hear your fear and frustration and can only hope that soon the feelings won't be so overwhelming. :heart:
> 
> Sarah and Matt have not yet had a repeat scopes. IIRC the 8-10 years was stated.
> 
> You are in my thoughts Tess, :hug:
> Dusty. xxx


This wasn't my first response Tess. I wrote one that had my musings as to why the docs don't have an issue with waiting even when they are saying ASAP, why LDN wasn't prescribed in the interim...but I doubt they would be any different to what you have been mulling over. 

I don't think you have blinkers on simply because you are considering all sides of the issue. This is your boy and you want nothing but the best for him. :hug: I also don't think the docs are blinkered either, that is not to say they aren't focused on protocol but the question is, are they following protocol because they know no different or are they following it because in their experience it has the highest degree of success. 

What is your gut feeling about the GI? How does he look at Stephen, how does he interact with him? Is this a guy that you know deep down wants nothing but the best for your lad? 

Ironically the most comforting thing that was ever said to me was the when the Crohn's specialist asked who Matt's surgeon was, when I told him he said...you know he will hate operating on a 17 year old. That spoke volumes to me, it mean't that the surgeon would go above and beyond for my son.  

I am in no way saying this GI is right or the one for you and Stephen. If you have faith and trust in your doctor then there is nothing wrong in accepting there opinion unquestioned but if you have any doubts then as Angie says, seek other opinions. 

Dusty. xxx


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## my little penguin

:hug: i agree with Dusty.

You are new to this GI so it makes things a little harder.
WE have been with Ds's GI for 2 years now and still question things...
 BUt I always like to question things.
THe GI then explains why its not xyz or if what I am asking to try is reasonable then we try it.
ALso if I am not comfortable with any med then we stop- have a chat and then decide how to proceed. 
OK some times lots of chats.:shifty:
He also encourages second opinions.
SInce as he put it once the main goal is to get Ds feeling well and if that means asking someone else for ideas then so be it.

Even then I still flip flop.
The only time I haven't is after the fact when things are going well.:biggrin:


So go easy on your self.
Make your bullet list.
Talk it over with the doc 
THen jump in the cold water deep end ..puttting your toe in does not make the cold water any better or easier to get used to.:wink:


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## Tesscorm

Actually, I think you hit the nail on the head...  because he's a new GI, I've built no confidence or relationship with him and then, he wants to change the treatment from one extreme to the other when NOTHING is showing me the urgency or need?!?!?  This is really messing with my head! :ywow:  

I've had my GP for 30 years, if she were treating Stephen, I seriously doubt I would question it for a second; if Stephen's labs were worsening or had symptoms, I think I'd feel right about a new treatment; if he'd offered even ONE alternative with solid reasons for his preference (ie no to flagyl, entocort, LDN, methotrexate...  only remicade or humira), I think I'd feel better about his recommendation - somehow, him offering only ONE solution makes me really uncomfortable.   Is he simply following a routine, by the book protocol that puts all his patients under control leaving less 'maintenance' for him and allowing him to focus on only a smaller number of patients having issues and his other areas of interest (he's involved in clinical trials, studies, director of a number of organizations, investigator studying IBD genes, lists almost 100 publications in his bio plus more!!)  On one hand, he seems to be the best GI I could ever hope to find for Stephen, on the other hand, he seems to be juggling so many balls that it may be easier to put patients on the medication most likely to bring about remission and less oversight for him.

BUT, earlier, Patricia described my feelings after the apptmt to a tee...  so, that makes me think all I'm feeling is 'normal trepidation' than any parent would feel... in which case, I should just be GRATEFUL Stephen was transferred to such a knowledgeable GI! :worthy:  As you said, Dusty, he may be following 'protocol' because he KNOWS it's the best thing to do!

:ybatty: :yfaint: :runaway: :angry-banghead: :yrolleyes:  

If I want to save my sanity, I really think I HAVE to ask him for another appointment (without Stephen) so I can re-ask EVERYTHING plus more! :yfaint:  I've hesitated to ask some questions point-blank because Stephen's been there...  I need to not worry about how Stephen might interpret the multitude of questions (ie, don't want to leave him with the impression I don't trust the GI at all nor do I want to burden him with worries that may be undue) so I can really get all my answers.




> jump in the cold water deep end ..puttting your toe in does not make the cold water any better or easier to get used to


:lol: :lol:  Love that analogy...  I am embarrassed to admit, I enter cold water, one step at a time, reaching my knees after much internal prodding, then gingerly splashing water on my arms and finally deciding it's just much easier to move my chair into the shade and cool down with a margarita!  Who needs that stress!? :rof:


Once again, all I can do is *THANK YOU* guys for being so patient and giving me a place to get out all my worries, concerns, flip flops,.....   and always sending back real, heartfelt, understanding and supportive responses! :Karl:


----------



## my little penguin

One last thing- I know you are the parent but...
In this case your son is the one in charge medically since he is eighteen.
At this point if you still have questions then he should really be there since him allowing you there is above and beyond for an adult Gi .
Plus as an adult he really needs to know what you are concerned about since very soon he will be doing this solo ( with a little coaching from you)
Maybe I am wrong - my kid is only nine - but by eighteen ok 30 I do plan on working to get him to that place where he takes over and I try to have a little faith .
But our Rheumo puts the kid in the  hot seat - the doc asks him all the questions - how the meds are helping etc...
Only looking to the parent for confirmation .


----------



## DustyKat

Now see Tess, just re read your post and see how switched on you are.  

I agree hun, you need to get these questions out and answered and then hopefully the fog will start to clear. Question the doc as to why his suggestion is the way to go, what he would do if it was his son and if he gets too wrapped up in himself tell him to stop and speak in English.  

Thinking of you Tess and wishing you nothing but the best. :heart: 
Dusty. xxx


----------



## Tesscorm

I agree MLP...  I do want Stephen to be involved in all aspects - the questioning, the choices, the decisions, etc. and he has been there for all previous questions, etc. and I discuss LOTS of what I learn/question here.  But, in this case, I wonder if some my concerns are over-the-top and I'm going to leave Stephen with the wrong impressions???  Stephen and I think very much alike, for this reason, he does trust my guidance/lead, if he sees me questioning the GI or the remicade too much, he may be left with a negative view of both and that view may very well be wrong.  It would be unfair to put those concerns on him if they are, for the most part, due to my fears.

The final decision will be up to Stephen...  I will give Stephen all the info I can as objectively as I can...  I won't try to convince him to go against the GIs wishes for remicade if that is what Stephen wants to do...  

All his doctors do treat him as you said...  ask him the questions, I'll just add details...  but Stephen is offering more and more info on his own.  At the end of the last apptmt, Stephen did spend some time speaking with the GI on his own - something I encouraged a couple of times with his ped GI too.



> allowing you there is above and beyond for an adult Gi


  Yes, I realize that...  I'm going to explain this upfront when asking the GI for an apptmt and explain my reasons for asking for an apptmt without Stephen.  Its not to discuss NEW info, just rehash old...


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## my little penguin

Hope the Gi will see you then by yourself --
And that he has some good  answers .
I just didn't want you to be disappointed if he wouldn't see you since you are not the patient or the proxy at this point.

Good luck


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## DustyKat

It is a difficult transition time you find yourself in Tess. As you know I am in the process of Matt taking full control of his care but I know full well he still looks to me to assist him. That is the thing, it is a process and it won't happen overnight, and when it comes to the transition from paediatric to adult care the same is true. Doctors know and understand this and there is, or should be an acceptance, that some parental involvement may be expected from 18 up until the age of 24, particularly where a chronic disease is involved. 

Dusty. xxx


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## kimmidwife

Tess,
What you said about the doctor having to much in his plate reminds me of the first doctor Caitlyn saw. He also was involved in research, teaching, publishing etc. he was very strong in his opinions and would not listen to what we had to say. He kept pushing do it his way or the highway. We chose the highway and found a new doctor who was willing to listen to us. You may be right in your gut instinct. I agree that it might be good to go have a heart to heart just the two of you.


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## izzi'smom

Tesscorm said:


> :lol: :lol:  Love that analogy...  I am embarrassed to admit, I enter cold water, one step at a time, reaching my knees after much internal prodding, then gingerly splashing water on my arms and finally deciding it's just much easier to move my chair into the shade and cool down with a margarita!  Who needs that stress!? :rof:


When are we hanging out??:ylol2:

Seriously, I can't imagine the stress of dealing with a new GI, especially at this crucial point in care. Sending :ghug:


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## Tesscorm

Stephen's scopes are scheduled for Jan. 22.  Any advice re the prep and what I should expect would really be appreciated! 

When he had scopes at diagnosis, it was a horrible experience!!  He vomited the prep (not sure what it was???) a number of times, wasn't clearing out enough, ended up having 2-3 enemas, all over the course of 13-14 hours, was in horrible pain and nurse still didn't think he'd cleared out enough! :ywow:  I imagine part of the difficulty at the time was because he hadn't been diagnosed as yet, was flaring and on no treatment.

Hopefully, this one will be easier   We're told he should use Pico-Salax.   As unpleasant as the prep usually is, what should I expect?  Can I expect that this one will be a bit easier than the last???  ie, people don't usually need enemas, right?  Does the 'clear out' normally take 13-14 hours?

Is it the taste of the prep that causes so many people to feel nauseated?  If yes, is there any reason he shouldn't use the NG tube?

Any tips would be helpful!


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## Johnnysmom

I would let your G.I. know if they are using the same prep as last time and it didn't sit well.  They have so many different kinds I don't know why they couldn't recommend another one.  

Johnny used Dulcolax tablets and miralax which was very manageable.

Good luck!


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## Mylittlesunshine

Hi tests
I feel for you with prep
My daughter had bad experience with
First bowel prep and her scope got 
Cancelled. 
We go again on Thursday 17 th jan 
But they are admitting her on 
16th. My daughter used sodium
Pico sulphate liquid.
It is easy to use its a 2 day prep
And u have 4 doses of medicine. 
What Steven is gona take sound 
Like the same but the adult version. 
What is his prep x 
Hugs to u both x


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## Tesscorm

Johnnysmom - I did tell the nurse about Stephen's experience last time and she didn't seem concerned that it would happen again?!?!?  I specifically said I was concerned that the results could be compromised because of a poor clean out...  Unfortunately, I don't know what was given to him last time as he was inpatient (different hospital and GI) and I knew nothing about any of this stuff so never asked... 

His scope's on Tuesday, I am going to start him on a low residue diet on Wed/Thurs and, if he'll agree, have him do exclusive EN on Sunday (and no food on Monday) (poor kid, hate asking him to go without food for two days :ywow: but, I guess if he did six weeks, he can manage 2 days).  I'm hoping this will have him as cleaned out as possible before we even start the prep...???

mylittlesunshine - the instructions for Stephen's prep show only a one day prep - first dose at 2pm Monday, 2nd dose at around 7pm and lots of water/clear liquids throughout.

Neither my husband nor I have ever had colonoscopies so Stephen's last scope is all I have to go by... I'm not really sure how things should progress over what time period???  Given his schedule, can I expect that the worst will be over by 10, 11pm??  (Last time the prep started at the same time but he was still drinking prep and having enemas at 2-3am.)


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## Mylittlesunshine

I'm not sure, I think all people are different,
X


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## upsetmom

WE used pico prep we mixed it with lemonade instead of water.
First dose was at 4pm... from what i remember things didn't start moving straight away...i think it took about 2 or 3 hours and then it was toilet every half an hour or so. The second dose was 6am the following day by that stage everything was clear.


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## Sascot

Sorry I seem to have missed an awful lot of posts.  Both Andrew and I have had the pico-salax - it's really horrible to taste!  Both of us needed the toilet within about half an hour of taking it.  Andrew had bad tummy pains and wind with it, I seemed ok with it.  I though it worked well there seemed no build up - it just all came running out - sorry if TMI :tongue:.  We both had 2 doses exactly 12 hours apart.  Andrew had one at 6pm the day before and 6am for his scope at 9am.
Good luck with the scopes and the decision about Remicade.  It is hard to go straight to something like that when the symptoms don't match in your head.  Having the same issues myself.


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## Clash

Tesscorm, I don't have any experience with that type of prep but wanted to let you know I was sending hugs and support for an uneventful prep and all would go as planned!!


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## Tesscorm

Thanks all!  Really hoping its a bit easier for him this time!

Well. Sascot, I think the decision is out of my hands... (Unless the scopes show something different...)    I'm not happy with not hvg a chance for a second opinion, etc but Stephen wants to go ahead with remicade.  He's afraid of things worsening and the GI has scared him into thinking there's no time to waste (altho 3 months have already passed since he said this!). As scary as these meds are, I agree he needs 'some' treatment and, I wouldn't forgive myself if I pushed for LDN or to wait for a 2nd opinion and something happened...   he'd blame me and I'd blame myself!  Wish I had a crystal ball!!!  But...  Since I don't, I have to respect his opinion...  Ugghhh!!!  Not sure when my baby grew up and found his own opinions!!   Think I'm going to join Dusty in her chanting and eyelash plucking! :ack:


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## my little penguin

Hugs
Hope the scope goes smoothly
Glad decision has been made-- never easy though


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## Crohn's Mom

Right there with you Tess ! It truly is one of the hardest things ever  
Just know we are with you in thought -
We raised them and guided them for this right ?? 
Gab and I are going through kind of rough times right now..( I hate it!)
Over how her health issues should be "handled" - it's no fun and definitely not an easy time trying to "let go". 
Take a deep breath and know you are not alone ! 
Xoxoxoxo


----------



## awmom

Warm liquids were recommended to us to help move things along and low residue will help a lot.  Have had no experience with the pico-salax since Nico has always done a ducolax/Miralax prep.  Last one they even let him eat a regular lunch the day before the prep...I was freaking out that it wouldn't work, but it went fine...go figure.  I do remember things were not 100% clear in the toilet bowl,, but apparently they just have to be clear enough.  I mention this because for his first prep I was worried that things were not clear and I made him do another half prep at 2am....he was not happy.  Low residue will really help with this. Will there be a nurse on call that you can contact in the middle of the night if you have questions regarding the prep?  Best of luck To you and Stephen.


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## Twiggy930

Finally catching up on some threads... Sorry to hear you are in such upheaval at the moment.  These decisions really stink.

My son did the Pico-Salax prep last year.  He found it HORRIBLE.  We mixed it with ice cold Sprite but it was still terrible.  He threw up most of the second dose and we ended up having to give him an enema.  My son plans to use the NG tube the next time he has to do the prep.  This was a major motivating factor for him to learn how to insert the NG tube!!! He also had bad abdominal pains with it but I imagine that was more due to his intestines being a hot mess at the time.  

Good luck!!!


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## DustyKat

Pico-Salax is the same as our Pico-Prep. 

Matt had this prep for his scope and found chilling it made it just tolerable. Only needing to drink two glasses of he stuff was a bonus. He struggled with the first glass and sculled the second one. :lol: So the NG tube might be just the trick for Stephen! 

It worked well for Matt though. His scopes were urgent so he did none of the dietary resections and had eaten a light lunch prior to his GI visit. He had the prep at 4pm and 6pm and his scope at 8am the next day. He was well cleaned out. 

I'll shove over so you can come squat in my corner too! :kiss: 

Dusty. xxx


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## Tesscorm

Thanks guys!

Stephen's quite happy to do the low residue diet as it includes pretty much all his favourite foods! And no fruits or veggies!  :lol:   But, he has been 'trying' to eat a more healthy diet...  even ate a bowl of pasta with kale pesto (this was a big deal given he normally picks out parsley because it's green! :lol  (The kale pesto was very good...  when I have a chance, I'll post the recipe in the Diet for Kids section.)



> We raised them and guided them for this right ??


   Yeah, whoever said raising independent thinking confident kids was the right thing to do!?!?!? :ybatty:

(Tracy, I've been watching for your updates too...  hope Gabby's feeling a bit better! :ghug

Dusty...  I think your corner's starting to fill up some, eh?  I'm getting a very funny visual of a bunch of us squatting and chanting 

Thanks for all the info re the scopes!!   I've got my surgery day after tomorrow and I want to get this all settled, pick up what I need, etc. asap.  Mine's not a big deal, I'm expecting that I'll be fine by Friday but...  you never know, better to be ready then be scrambling when I'm not feeling well!


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## Clash

Tesscorm, sending support and hugs for the surgery, I hope your recovery is quick and painless!!


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## Tesscorm

Yeah, me too     I'm anxious to finally get it done...  my HGB has gone up slightly (from 83 to 90) but have really been feeling the fatigue since the cruise.  Between my dad, Stephen's CD issues, Christmas and the cruise, I guess I just didn't have time to feel tired but now... :yfaint: it's literally an effort to move from the couch to bed! :lol:  I know it'll take a bit of time to rebuild the iron levels but, at least, I won't have the fibroid/bleeding working against me as I try to rebuild! :thumright:


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## Tesscorm

A question re the scopes...  maybe a dumb question after the time I've spent here but, nevertheless... :redface:

Are biopsies done at every scope or just when trying to determine a diagnosis?  Should Stephen's GI be doing biopsies and why or why not?


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## jmckinley

Good luck on your surgery and I hope you recover quickly (but fake it to get some rest :thumleft

I will be squatting in that corner soon. With Ryan at 15, he is very much an independent thinker. I've been encouraging him to pay attention to his health and the decisions and so has the GI. But after reading your posts, I may see if I can get him back in that "must kill zombies on ps3" mode! 

I can't believe it! I pluck my eyelashes too...top left eyelid, outside corner!

I hope the prep goes well and you get some answers that make you more comfortable with the decision. Last year Ryan's GI and I went through the same struggle. I couldn't decide if he was just following protocol or actually knew his plan was the best course. I finally gave in to his plan, and although it didn't work, the GI re-routed very quickly which showed me that he wants what's best for Ryan.

Hugs!!


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## kimmidwife

Good luck with your surgery tomorrow! Having Stephen do only liquids the day beofre should make it a little easier. Also I would ask if you can start earlier so he does to end up on the toilet all night LNG. We started at 10 am this last time and Caitlyn only woke up once in the middle of the night not like previous times where she got up multiple times.


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## Crohn's Mom

Thinking of you Tess ! 
Xoxoxoxo


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## Tesscorm

Thanks Kim - good idea, I will start him a bit earlier on the prep!


OMG, does this rollercoaster EVER stop?!?!?!? :ymad:  Finally resign myself to remicade and now, husband calls the nurse to start the process, and she doesn't think our insurance will cover it because we haven't tried anything else!  I hadn't even thought about this  although I probably should have... :ybatty:  Hopefully, we're jumping the gun...   she's going to file a report with the insurance company and see what they say, so I guess we'll see...:ymad: :voodoo: :ymad:


By the way, my question above re biopies...  



> A question re the scopes... maybe a dumb question after the time I've spent here but, nevertheless...
> 
> Are biopsies done at every scope or just when trying to determine a diagnosis? Should Stephen's GI be doing biopsies and why or why not?


Thanks!


----------



## Patricia56

As far as I know most GI's do biopsies at every opportunity. Our current GI certainly does so.

But we had one GI who did not do any biopsies during one scope. I could have shot the man. I did fire him. Idjit.


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## Patricia56

Doctor trumps nurse every time.

If he wants Stephen on Remicade then he will make a strong case for that. If Stephen fits the profile then it is likely he will get approved no problem. If not the doc will appeal.

You may be able to look up  your insurance company's policy/criteria on Remicade using your favorite search engine. You'd be surprised what's out there for public consumption. For example, you can usually find Aetna and Blue Shield//blue Cross policy docs online.


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## awmom

Nico's GI's have done biopsies at each of his three scopes.  I believe it's the best way to know the severity of disease or activity in various areas.


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## Tesscorm

Patricia56 said:


> Doctor trumps nurse every time.
> 
> If he wants Stephen on Remicade then he will make a strong case for that. If Stephen fits the profile then it is likely he will get approved no problem. If not the doc will appeal.


Hope you're right!

And did find some info online re our insurance company and remicade...  thanks for the suggestion.



Thanks awmom


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## jmckinley

Ryan has had biopsies with all of his scopes. 

Insurance should cover Remi with GI applying for you. If you still have a co-pay, check remicade website. They used to have an assistance program where you got a debit card to help pay for the first year or so. We got the card, but our insurance ended up having no co-pay. It's not income based, everyone accepted. It's called Remi-start.


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## Tesscorm

I'm not sure if your "co-pay" is the same as deductible??  It's not a term I've ever heard used, other than here.  If it is, I'll have to look into this as well.

Since we're seeing the GI on Tuesday, I'll have a chance to ask him about this...  and, we may hear more from the nurse.  The nurse we spoke with is not the GI's usual nurse but one who specifically coordinates the remicade.


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## Patricia56

Copay is not the same as deductible.

Copay is what people who have HMO's pay when they see their doctor. Instead of having a deductible that must be met before the insurance starts paying for most care, in an HMO the insurance pays most of the bill for most medical care from the start and the insured pays a set "co-pay" for every doctor visit all year, regardless of how many visits or  how expensive the doctor visit.


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## DustyKat

Biopsies should be done Tess. There is a lot to be said for actually visualising the bowel but biopsies compliment that by giving greater depth of detail. 

I hope all is going well with you Tess. Sending loads of healing thoughts your way! :heart:

Dusty. xxx


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## S mom

From my understanding (from a canadian perspective and after asking the pharmacist this same question last night), 'copay' is referring to the 'left over" percentage that you would have to pay if your insurance company doesn't cover 100% of your drug cost.  So, in our case, my insurance plan through work pays 90% of the cost of Huhmira, so we have to 'copay' the remaining 10%.  From what I have heard, there are some 'subsidy' options out there to help you pay that extra amount for these expensive drugs.
Good luck with getting this sorted out


----------



## Tesscorm

Just a quick update on me   Surgery done, am home and no problems!  Just feeling a bit tired and lightheaded/dizzy.  Doctor said dizziness due to low blood pressure, I normally have it on the low side but was 80/45 in recovery!   Was a bit better when I left but I guess the tiredness and dizziness is to be expected today.  But, otherwise, truly fine - no pain, no bleeding, etc.   As Dusty would say.... onwards and upwards! :thumright:


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## Farmwife

You won't regret it! I plan on having it again in a year or two.

Glad your doing better. 

HUGS


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## Crohn's Mom

So glad to hear you're home safe and sound ! 
Hope you have a speedy and uneventful recovery! 
Xoxoxo


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## crohnsinct

JM: Remi start not income based?!  Why didn't I know this?

Tess: so glad you are good...how long till you can drink again...I can't hold down the fort on my own forever ya know!


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## Tesscorm

24 hours!  Don't you start dipping into my stash!!!!!  :arghmatey_ani:


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## Clash

So glad to hear all went well!! Hope you have a fast recovery!!!


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## jordan29

Hi Tess sorry to hear you have you have had a lot going with Stephen your dad and your op just to let you no Jordan's inflammation has never gone down so November last year he got called in for scopes done they did take biopsy and as we thought sill the inflammation in the colon and it had travelled up in to his stomach so our next step was remicade I have never felt so nervous when Jordan had his first loading infusion and his second one 2 weeks later then he went 4 weeks for his third one that was yesterday and his next one is 8 weeks time it's no good me saying don't worry because us mums it's an every day thing so me and Jordan are sending you and Stephen loads of big hugs and pray yous get the results Jordan has got out of it he in like a new lad he has put nearly a stone on in as weight and his hockey is back to the Jordan we had as but two year ago even his coach says his engery levels are amazing just keep thinking positive tess their is a light at the end of the tunnel xxxxx


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## DustyKat

Woohoo! Thanks for the fab update Tess!  

So good to hear all has gone well, now...Onwards and Upwards! 

Dusty. :heart:


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## Tesscorm

Thanks jordan29!!  I've wondered how things were going with you, was actually thinking of you last week   I'm sorry that Jordan wasn't able to alleviate his inflammation but great to hear he's doing so much better!!!  :banana:

The worry is always there for us moms!   But, it makes it so much sweeter when we see them feeling and looking good!! 

Let us know how Jordan continues to do with his remicade!


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## jordan29

I Will Tess and I hope it all goes well for Stephen xxx


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## Sascot

Really glad your op went fine and you are feeling ok!  Hope the insurance gets sorted for the Remicade.


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## xmdmom

So glad surgery went well. Go slow, ok? You'll need some time to heal and get your blood count up.  Wishing you a speedy recovery!


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## my little penguin

:rof::rof::rof::rof::rof:
WooHOO
HOpe you are back up and drinking in no time:emot-dance:


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## jmckinley

So glad you are feeling well after your surgery!

CIC- I don't believe remistart is income based. I remember the remicade nurse saying that (I'm pretty sure)...I coulda been smokin' something. We arent loaded, but we wouldn't usually be approved for something that was income based. We did get the card. I think they are just trying to encourage you to get hooked on remicade instead of humira or something else. Up to $150 per treatment for the first year is pretty enticing and I think it's $50 per treatment for second year. (8 treatments, I think)


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## jordan29

Hi Tess hope Stephen is ok doing his prep before his scopes tomorrow and all goes well for him xxx


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## my little penguin

Good luck Tuesday !!!


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## Tesscorm

Thanks!

Well, so far, so good...   Not!?!?  He didn't drink the first sachet until 4pm bcz today, of all days!, he could NOT miss last class.   Drank the pico-salax, and some water and promptly fell asleep till I got home from work!  :yfaint:  Great that he's not getting sick BUT not much of a clean out while sleeping!!!   Hoping now that he's up, things will start moving along!  Left lots of instructions for him but forgot the part about "do not crash out!" :ywow:

He ate very little ystdy, mainly Boost shakes and nothing today so maybe there isn't much to clean out???


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## Clash

Just sending good clean out thoughts your way!!!


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## my little penguin

Ugh hope things move quickly

Does he have dulcolax to take as well


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## Tesscorm

No. Our instructions are only 2 sachets of pico-salax, 4-6 hours apart.  I'm going to give him the next one at 9pm and start giving him warm liquids...  Anything else that might get things going?  Coffee??  I'll have to check the list of acceptable fluids but I think black coffee was on there...  Would sugar be okay?


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## my little penguin

That is different from miralax + dulcolax we used since it has a laxative .
Good luck


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## crohnsinct

Hey Tess.  No Advice just wanted to pop on and wish you luck for the rest of tonight and certainly for tomorrow!  

Goes without saying...keep us posted!


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## kimmidwife

Wishing Stephen luck! Glad your surgery went well!


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## Jmrogers4

Just adding my positive thoughts for tomorrow


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## Crohn's Mom

Tess - hugs, hugs and more hugs !! 

It's like Murphy's law huh?
Whatever can happen, will! 
Hopefully things are "flowing" at this point and all is well! 

Thinking of you both


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## Sascot

Good luck with the scopes - hope he managed to get cleaned out ok.


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## S mom

Good luck today - hope everything goes smoothly!


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## Twiggy930

Hope all went well today.


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## Dexky

I hope there were no surprises unless they were good ones!??


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## Clash

Just dropping in to say I hope the scopes went well!!! Hugs!


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## Tesscorm

Scopes went really well :thumright:  Clean out successful and, compared to last time, soooo easy!!!  No nausea, no pain, nothing?!?!

Stomach, duodenum, cecum, colon, rectum ALL CLEAR!!  (Last scopes had shown inflammation in all those areas except rectum!)

He was able to go into the TI a bit and said that of what he was able to visualize, it was all inflamed (he said 'moderate').  He couldn't go in very far so said we have to go with what's been seen on MRE results.

No change with his remicade recommendation.  

I'm so relieved that there was no other inflammation!!!   Although the MREs had said as much, GI had said MRE isn't as reliable for these areas as a scope and wanted to verify that these areas hadn't worsened.

He didn't do any biopsies (other than some for a remicade study Stephen agreed to participate in)... :confused2:   I wish I didn't feel this way but this guy just doesn't settle my nerves and I'm not sure why???  Maybe it's simply because I don't like what he's saying re remicade (or really any med!) and I'm unfairly shooting the messenger???

When I asked about biopsies, he had this totally blank look and truly didn't seem to remember if he'd taken biopsies   Okay, I get he does lots of these but, he'd done Stephen's scopes only a couple of hours earlier???  Then Stephen asked about the ones for the study and the GI said 'oh yeah, we did four for the study'.  :ywow:  Am I the only one who finds this conversation odd?!?!?  My husband said perhaps he didn't do biopsies because the TI inflammation was enough that he knew he wouldn't change his recommendation.  Okay... get that, but he truly, truly DIDN'T seem to remember???  So, WTH???

And, again, I thought he 'scared' Stephen...  said remicade will do a lot to avoid extensive surgery that he'll probably need without remicade.  I'm not saying he's wrong but I just feel like he's a bit manipulative in the way he presents things to Stephen...  Husband said it could just be a 'communication' issue, that he doesn't mean it the way I'm taking it... perhaps??:shifty-t:

Mini-vent over!  

It was a good scope with easy prep and GOOD results! :thumright:  They didn't use general anesthesia although Stephen thought he'd fallen asleep anyway.  But, separately, the nurse and then the GI joked with Stephen that he had talked TONS during the scope, had entertained them and had them all laughing throughout!?!?  They wouldn't say what he'd said but the GI did say Stephen had some very interesting things to say!  :ylol:  Stephen's so curious about what he said (probably better that I don't know! ) but says he remembers nothing at all.

So, a good day!


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## Jmrogers4

Glad scopes went well


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## Clash

I'm glad the clean out went so smoothly, that is how C's went too. I was all worked up about it and it went fine.

Great news about the inflammation not being present in those areas!! I know that takes a load off of your mind.

Sorry you are wary of this GI. I know it must be hard, how is Stephen feeling about it all? Does he feel manipulated in any way? C becomes distrustful quickly, he sees in black and white so sometimes I worry he is going do the opposite and turn against the doc over things....so far so good.

Anyway, glad it all went well! (I thought they always do biopsies, now I wonder if C will get biopsies at the next scope, can you request them, I wonder?)


----------



## my little penguin

Hugs
I agree that is weird how could he not know if he took biopsies?
Biopsies are needed to monitor the inflammation even if he couldn't see it.


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## kimmidwife

Tess,
That sounds weird to me also. How could he forget in such a short amount of time? I am agreeing that this guy sounds manipulative as well. I don't know maybe sit down with Stephen and ask hi. What his perception of the doctor was and tell him your worries. I also can't believe they didn't give him general. Thank goodness he didn't feel it and fell asleep.


----------



## Tesscorm

Stephen likes him and feels comfortable with him (and, at the end of the day, that's more important than how I feel!).  The GI always speaks directly to Stephen, makes sure he understands and answers all our questions so...  that's why I sometimes wonder if it's just me??  

But, then these odd things happen like forgetting the biopsies :yfaint: or being so 'extreme' in his wording - extensive surgery, not being able to live without a small bowel...!!! :thumbdown: IDK...

Clash - I wondered about biopsies too...  I was going to ask the GI before the scope but didn't see him until after.

MLP - yeah, my instinct says that biopsies should've been done.  :thumbdown:  As far as remembering, I wonder if HE didn't do the scopes and had another GI (a more 'junior' GI???) do them and that's why he didn't seem to remember??  Again, something that just makes me go 'hmmmm???'  I don't think I would've minded if we'd been told (if this is the case) but just leaves me with mistrust/questions (at Stephen's last scope, although the Head GI came to give the diagnosis, etc., they told me ahead of the scope that she wouldn't be doing it, that two other GIs would actually be performing the scopes).

Kim - yep, I was  when they told him they weren't giving him general!!  But, I guess they give enough of the 'twilight' (not sure the 'real' name for it) that they're sure the patient is comfortable and, I suppose, it's easier recovery.  Stephen was completely fine 30-45 minutes afterwards and an hour or so later, we went out to eat and we gave in to a junky meal (poor guy, he was STARVING and we felt sorry for him!)


----------



## kimmidwife

Ugh Tess that is hard when your kid likes a doctor but you are not feeling the same. That is a tough one. I a,so don't like the way he is being so extreme. I used to work with a doctor like that aNd it really turned a lot of our patients as well as myself off.


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## Tesscorm

Yep, I try to keep in mind an earlier post of Patricia's about how a GI can come across...  they may seem abrupt and short but it may be simply because they've seen it, done it, experienced it, etc.  but it is tricky   I'm glad Stephen feels comfortable with his GI and, no question, this guy is very knowledgeable so, I don't want to create mistrust in Stephen when it truly may just be a 'communication' issue and my own emotions. :ybatty:

But, I am giving a second opinion one more shot...  There's a GI listed in the forum's directory who's very close to home - last week I asked Stephen's GP to try him for a second opinion... we'll see what happens.


----------



## Patricia56

Glad the clean out went well. Not such good news on the results. My reactions to your news:

1. I would have expected him to take biopsies throughout colon. Visible inspection is not sufficient to rule out inflammation at the mucosal/cellular level. Many a GI has said "looks good" only to have the path report come back "extensive inflammation of the crypts" etc. consistent with Crohn's. The fact that he found visible inflammation in the TI in my lay opinion should have triggered him to take biopsies on his way back out if he didn't do it on the way in. OTOH once he saw the visible inflammation in the TI he had all the confirmation he needed to justify remicade so his SOP at that point may be to take as few biopsies as possible. Which I can see a point to that since each biopsy is a cut into the mucosa which will further damage the mucosal lining. Only way to know is to ask the guy to explain himself. Perhaps at the right moment, when he has time and can give you his complete attention, you can ask in general terms about his approach to diagnosis and more specifically about how he does scopes, when he does/doesn't do biopsies, etc.

2. I think I may be confused or lost in this lengthy saga. Has Stephen started Remicade or not? If not then it makes sense that the GI isn't changing his recommendation to go forward with remicade given extensive visible inflammation in the TI. If he has started Remicade and this is meant to check his progress then the results aren't very promising and should lead to discussion of whether to continue on current regimen or increase frequency/dose, etc.

3. If he didn't take any biopsies then it makes sense to me that he would have trouble answering your question. When you haven't done something it's much easier to forget you haven't done it don't you think?

4. The post about GI's was not meant to excuse or explain brusque, rude or abrupt/short behavior by GI's. It was meant to address the fact that some GI's will not push parents to make a particular decision even though the GI feels very strongly that the parents are making a grave mistake to refuse a particular treatment. The GI is detached but compassionate - not rude, short or otherwise an a$$.

I am thinking it may be time to give up on the 2nd opinion thing Tesscorm. For now.

Stephen is happy with this GI. A treatment plan has been chosen. Scope has been done with results supporting proposed treatment plan. Things may not be perfect but they are never perfect.

I too wish the guy had taken more biopsies but I am hesitant to criticize because we are now entering grown up land and my sense is that they do things differently there. We are not in Kansas anymore (were we ever?) and the rules probably changed but no one gave us the new playbook.

You have been a terrific advocate for Stephen. How much is he participating in these decisions? What does he want to do about a 2nd opinion?

It may be the time to step back, take a deep breath and wait to see what happens next and how Stephen will handle it.

Many hugs.


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## Dexky

Glad things went well Tess!  I'm glad we still have a few years before EJ is Stephen's age.  I hope Stephen will always consider your counsel but I guess at some point he will put his foot down.  Actually, I know they all will!


----------



## Tesscorm

Thanks for all your comments, Patricia :thumright:

In answer to them all...

1, 3.  I agree re the biopsies, was a bit surprised he hadn't taken them BUT if his purpose had been to determine the need for remicade, then the TI inflammation answered his question.  I don't agree re the 'memory'...  IDK but I would think if he'd just done a scope within a couple of hours, he would remember why he did or didn't do biopsies???  Not a big deal at this point but just one more thing that makes me go 'huh?!'.

2.  Hasn't started remicade yet, we've just started the process to initiate but may run into insurance issues.  But, early days yet...  not going to borrow trouble until I know for certain.

4.  Understand 

Re second opinion, etc.  I had given up on the second opinion, timing was wrong, wasn't happening, etc. but when Stephen went to his GP last week for the TB test, I figured it wouldn't hurt to ask about another second opinion...  if it works out, great, I'll appreciate the info/opinion; if not, I won't hold up treatment for it. 

As far as Stephen's involvement...  he's worried about undertreatment consequences, rightly so, but I think he's been a *bit *misled as to the severity of *imminent *consequences by the way the GI presents them.  His wording/comments (life threatening, extensive surgery) are scary but then he doesn't follow up with anything other than moving ahead with remicade, even when the process is taking months. Obviously there was more to the conversations but I just get the sense that he emphasizes what works for him.  Not saying he's wrong but it's unfair/manipulative...  and this just makes me nervous and leaves me with doubts rather than reassurance.  

Having said this, I agree treatment is needed and am as _fine _with remicade as I would be with metho or imuran, etc. and, given the GIs experience, knowledge, resources from large hospital/IBD clinic, should there be any complications or if surgery is someday needed, I would want Stephen to be treated by someone with his qualifications.  (Does that make sense, don't mean to be contradictory...)   

Dexky - yep, all new rollercoaster ride when they reach around 18! :yfrown:  It's a fine line when sharing our knowledge but keeping emotions separate.  I'm asking questions and letting Stephen hear the answers, and then letting him make the decision.  It's tough when you know they haven't done the research you/we have but...  even with our research/knowledge, we don't have a crystal ball either!:yfrown:  We do the best we can, right?


----------



## xmdmom

(posted before above...)

Glad the endoscopy went well and looked so good!  General isn't usually given for gi endoscopies for adults. I believe they use "conscious sedation" and it is typical to not remember the procedure despite having talked with the doctor during it. 

It bothers me that the doctor seems so set on Remicade and that he doesn't seem to be considering the new information from the scopes. Perhaps the inflammation in the ileum was enough but then why do the scope in the first place?

My son has inflammation in 8 cm with some narrowing of  the terminal ileum on MRE and scopes and his doctor (head of well known IBD center) is happy to follow on budesonide and ldn.  Certainly there may be other important differences between our sons, but it goes to show you that different doctors are more or less aggressive with drugs and surgery.  My son was happy that his doctor said he didn't need imuran or remicade (at least not now) but we are well aware that another doctor might have pushed for one of these drugs.  In fact, the doctor he saw at diagnosis wanted him on imuran.  I don't know if my son's current treatment is best or not aggressive enough.  I wish the guidelines for therapy were clear-cut!


----------



## Patricia56

Tess -

The GI's typically do many procedures all at one go. He may have done 10 scopes that morning. It's nice if they really clearly recall your kid's specifics but it may just be unrealistic. Just a thought.

Again, I may have gotten lost here but if Stephen has visible inflammation of the TI and the MRE is showing active inflammatory changes then, as I understand it, the GI is on solid ground in pointing out that there are possible severe consequences to leaving that untreated. I think it is impossible to know whether those consequences are in fact imminent or not.


In the past 6 years I have been on boards where at least three kids went from apparently fine to emergency surgery/hospitalized with perforations, severe abscesses or complete obstructions. With NO warning. If I recall correctly each one was on minimal treatment but I could be wrong about that. The one I recall most vividly was a young adult 18ish who was using EN to manage his CD. He had a perforation and abscess with no period of illness or obvious symptoms. Driving home from college with his mom and suddenly struck by severe pain and then bam in the hospital for 2 weeks.

I can certainly understand that the GI may not be consistent in his messages. I get the sense from what you write that he is not a great communicator and may be more from the "I'm the expert just do what I say" school of medicine. I don't know about you but doctors like that tend to make me ticked off by just walking into the room.

I think it is perfectly reasonable to demand that he pay attention to the fact that the process is taking months. That is definitely something I would get in his face about, nicely of course. His face, his NP's face, his nurse's face, the insurance company, whoever. Especially now that you have scope results to validate the urgency of getting the treatment started.

What exactly is it you hope to get from a different GI? Better communication? If that's the only thing then I guess I suggest that you corner this one and gracefully but plainly discuss your concerns first. I think it's OK to tell them that they have many patients, you only have one and he is precious beyond measure to you. So you really appreciate the GI taking the time to give you enough information that you don't turn grey with worry and can feel safe placing your child in that doctor's hands.

At regular appoints I suggest you write out questions on a sheet of paper and hand it to him when he walk in the door. It's especially helpful if you have also, at the top, bullet summarized the current state of affairs (diagnosis, meds, sx, what's changed since last appt) followed by list of questions* in order of importance.*  Expect that he will not get to the last one/two/three depending on howmany there are on your list.

Regarding the current situation, I suggest you put your valid concerns into a fax and send it off along with an e-mail to whoever and a phone call so you've covered all the bases.

You told us that Stephen needs Remicade immediately because he might develop a complication like perforation or blockage that would be life-threatening. The scope yesterday confirmed the inflammation in the TI.

It is taking months to get him started on Remicade due to scheduling delays and insurance issues.

We are very concerned and want to know what can be done to get him started on Remicade immediately.

If he can't start Remicade immediately, is there something else that he should be taking instead to help him until then?​


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## Patricia56

xmdmom -

boy don't we all wish there were guidelines like you are talking about.

but there would still be lots of parents who would dispute them, refuse the meds, reject the conclusions.

And there is no new information from the scope as far as I can tell since the gi didn't take any biopsies of the colon. It is entirely possible that there was mucosal inflammation throughout the colon. We simply don't know.

Is your son improving on his current treatment plan?

How long is he going to be on budesonide?


----------



## xmdmom

My son seems stable on his current regimen. He lost weight after he skipped a lot of meals at college but gained it back at home over vacation. Repeat MRE shows inflammation localized in TI.  His doctor says he keeps patients on budesonide as long as it works, which can be years.


----------



## my little penguin

Tess
You do the best you can 
But the Gi is right 
They have no way of knowing who will progress quickly and whose disease will take longer to progress .
The gi's base their recommendation on their past experience , what they are seeing in your child as well as known risk factors.
Which is why a Gi needs to see , read , touch etc before making a recommendation.
I know its harder to accept things are bad IF the Gi is taking his time ( remember Gi fast is never parent fast   )

But  the Gi is going with known facts
Kids have more severe disease progression
Their disease location changes as does the type .


----------



## Tesscorm

my little penguin said:


> remember Gi fast is never parent fast


:thumleft::thumleft:  You're so right!

At this point, we're just waiting to hear back from the remicade coordinator re the insurance.  While not borrowing trouble, her immediate comment was 'they likely won't approve remicade as he hasn't tried anything else'.

Hmmm, have no idea what we'll do then as the GI has said nothing else would be effective???  :shifty-t:  I told him about the insurance yesterday when he asked if we were still 'on' to start remicade; he said to let him know if it's not approved...  so, waiting...


----------



## my little penguin

Hugs hope it goes through quickly

Ours was done stamped approved in five minutes
But DS had tried everything else and was a little over achiever


----------



## Twiggy930

I was told we wouldn't be approved for Remicade until my son had failed either azathioprine or methotrexate, but I am in a different province.  

Why is the GI suggesting that only Remicade would work?  As far as I know the only way to see if other drugs would work would be to try them.  I am not in any way suggesting that Remicade is a bad choice I just don't see why it is the only choice at this point.

Hang in there!  

I am super glad to hear that the Pico-salax went ok.  My son dreads having to take it again one day. :ybatty:


----------



## Dexky

Tesscorm said:


> :thumleft::thumleft:  You're so right!
> 
> At this point, we're just waiting to hear back from the remicade coordinator re the insurance.  While not borrowing trouble, her immediate comment was 'they likely won't approve remicade as he hasn't tried anything else'.
> 
> Hmmm, have no idea what we'll do then as the GI has said nothing else would be effective???  :shifty-t:  I told him about the insurance yesterday when he asked if we were still 'on' to start remicade; he said to let him know if it's not approved...  so, waiting...


Phew!!  Good thing Remicade coordinators and insurance agents are smarter than Doctors!!  WTF!!


----------



## DustyKat

Hey Tess, 

Sorry I am so late to this. :hug: Good to hear the clean out and scopes went well.  And super fab that inflammation was only seen in the TI!  

Now just my own personal feeling/sense that I have from reading what you wrote: 

The biopsies: It would have been good to have that added reassurance of colon and upper GI biopsies but with a diagnosis in place from what I have seen at work and read over the years that it is not uncommon, as such, not to take biopsies. I am in no way suggesting that not taking biopsies is right but rather that I am not shocked that he didn't. 

The memory: Well again, this doesn't surprise me either. When Matt had his scopes it wasn't an issue as the GI spoke to us straight after it but I see this sort of thing day in and day out and it hasn't changed in all my years of nursing. I have never found it to be a reflection of a doctors ability. I have worked with many a brilliant doctor that is lucky to know the day of the week and will look blankly when you ask them something. I wish I had a dollar for every time I have said to a doctor...well, did you hear what I said???...WELL???...huh, oh yeah, I was just thinking. They then carry on as if nothing happened and you're thinking WTF!!! It's worse when they do it while you are on the phone cause then you think they have hung up, so you are yelling down the phone...are you still there?!...yeah...well bloody well say something!...I was thinking. :lol: 

The Remicade: The doc sounds very black and white and definite in what he believes in. I hear you about the way this sounds to you and Stephen. :hug: Matt's last GP was exactly like this. Just laid things out and sounded brutal about it. When I would tell him that he sounded like a cold bastard he would look shocked and say...I am only telling it like it is. Ugh! 

Hmmm, it seems I have gone around the world for sixpence to say that the GI you have found yourself with is not a rare breed in the medical world! :yfaint: 

Oh Tess, I hope you soon find a place in which you are comfortable and that now that Stephen has chosen the path he wants the authorities stop buggerising around! :voodoo: 

Sending you load and loads and loads of luck, love and well wishes from across the pond...:heart:

Dusty. xxx


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## Tesscorm

Luv ya Dusty!     You do have a way of putting all in perspective!! :hug:

The memory thing :rof:...  well, he DID see us right after the scope (okay, 60-90 minutes after, including recovery time) but that 'blank' look...  okay, I'll bite..., perhaps it was deep thought!  :rof:  My husband has those moments of 'deep thought' too! :yfaint:


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## Tesscorm

Just thought I'd best clarify in case you people down under don't have same the _"I'll bite"_ saying...  as much as I'd like, promise, I won't actually _bite _the GI if he seems to be in a thoughtful daze!  :ylol:


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## Jmrogers4

Might get him out of that "thoughtful daze"  Just a thought....


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## Patricia56

Yeah I have a few doctors (and a couple NPs and various other medical professionals) that I would be happy to see bitten - one or two should be bitten on a regular basis frankly. 

Thoughful dazes would not necessarily be the reason for the bites however.

You up for the job Tess? I got TMJ problems or I would do it myself.

:sign0085:


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## Patricia56

You don't need to worry about having to suck their blood like a vampire though.

The docs I have in mind didn't appear to have any blood to speak of.


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## Jmrogers4

Patricia56 said:


> You don't need to worry about having to suck their blood like a vampire though.
> 
> The docs I have in mind didn't appear to have any blood to speak of.


:ylol::ylol::ylol::ylol:


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## Farmwife

Patricia56 said:


> You don't need to worry about having to suck their blood like a vampire though.
> 
> The docs I have in mind didn't appear to have any blood to speak of.




:ylol::ylol::ylol::ylol:


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## Patricia56

Jm and Farmy -

You two can laugh all you want.

I am thinking of carrying a stake with me if we have to transfer Badger's care back to our local medical center GI program when he turns 18. Smaller than a pitchfork.


----------



## Tesscorm

He is quite handsome...  A bite here and there might not be so bad!  :thumright:

You know the next apptmt may be quite interesting...  Him talking meds, me thinking bites!  :ytongue:  I may be the one in a thoughtful daze!


----------



## Jmrogers4

OMG!! Thank you both I really needed the laugh today. Working myself up into a tizzy wondering what is going on with Jack


----------



## DustyKat

Means the same here Tess.


----------



## Tesscorm

I don't know if I should cry, laugh or just jump out the window!  I do know I'm going to lose my mind one of these days!!!

Remember I asked for a second opinion back around x-mas?  Stephen's GP sent in the referral and they declined.  Okay, resigned myself to giving up on a second opinion.  Two weeks ago, Stephen goes in for his TB test and I thought 'why not try for another second opinion?  No harm in geting more info.'  Stephen went on his own to the GP but I sent a note with all the info, Stephen came home and said GP said 'fine for second opinion'.  

So, I patiently wait to hear back.................  yesterday, I call the GP's office to ask about a response and junior secretary doesn't know anything about it but suggests I call this GI's office to see if they'll give me a date.  I call, GI's secretary can't find any referral.   Call the GP's office again, speak to the senior secretary, she only remembers the decline of the first referral, doesn't have a record of sending a second referral, thinks the GP may have forgotten and will speak to him.  :ymad:

_(the saga continues.....)_

I go home, all mad because I can't count on any doctor!!, and Stephen says 'did you phone the GP, you were supposed to?'  Ummm, no one said I was to call the GP!!!  Ugghh!!

Call the GP's office this morning, speak to the senior secretary and she says 'the GP says no to _another _second opinion because I already have one!!!'  _OMG, WHAT?!?!?  _I said, 'the last one declined???' and she says, 'oh?? but didn't they call back and schedule an apptmt?'  _Ummm, not that I've heard!!!_ So she suggests I call the office of the first second opinion referral and see if they have an apptmt for Stephen scheduled! _Okay, who do I shoot first!?!?!?  I don't even know... but I'm thinking ME!_

So now I'm just trying to get a call in to the first 2nd opinion GI!!!

(We recently had our employee reviews and my boss mentions that I've seemed distracted lately...  ya think so?!?!?)

Just had to vent....  (I need a volcano smiley here!!)


----------



## Jmrogers4

How about this one.


----------



## Sascot

Wow, that is so frustrating.  Definately a lack of communication between well... everybody!  Sounds like me in December, felt like I was going mad.  Hope you manage to get something sorted out!!


----------



## Farmwife

jmrogers4 said:


> View attachment 1634
> how about this one.





cool

Sorry to hear about all the confusion. I hope you get answers soon.


----------



## Tesscorm

Jacqui - LOVE IT!!!  *PLEASE*, can I have the real live one!?  :lol:


----------



## Farmwife

Two for me! Please and Thank You!


----------



## CarolinAlaska

Any word yet on the 2nd opinion?


----------



## kimmidwife

Hi Tess 
Just catching up life has been crazy busy. I can't wait to hear if and when you get that second opinion. I am happy to hear they are letting you get one!


----------



## Tesscorm

Ugghh...  still working on it but no further ahead!  First 2nd opinion office was closed Thurs, left voice mail on Friday (no call back).  Am going to start calling every 5 minutes tomorrow morning until I get a live voice!!  :lol:

But, am really annoyed with the GP's office staff, I really think they caused the confusion here and I'm the one running around trying to figure out if/when an apptmt was scheduled!  Oh well, am not going to let it annoy me...  will just move ahead!

Still haven't heard back re the remicade yet either, will be following up with that too.  Seriously, who has time to work???? :ybatty:


----------



## Maree.

I can so relate, even my GI doesn't trust the admin/insurance staff at his hospital, they are that bad.  Sadly I've not experienced any better at any other hospitals/clinics here.

In the last six months our Insurance company has started sending patients text messages when they recieve the application & when a decision is made.  I think they did this because clinics & hospitals always blamed them for delays with approvals.  So at least I know when I need to go and scream at the man at the insurance counter.


----------



## Tesscorm

Just in case I needed a fire lit beneath my you-know-what to get that 2nd opinion...!!! 

Stephen was sick all night and this morning, D, vomiting, in pain, etc....  we were considering taking him to ER but...  it seemed to settle and, I believe, it was my MIL's cooking!   not Crohns.  Unfortunately, her food tastes great but is very rich and heavy, not at all how we usually eat at home.  

Stephen didn't help things either...  had D a couple of times in the evening (didn't tell us), then before bed had two bowls of cereal, then started the tolerex feed!  His poor stomach and intestines didn't stand a chance!  3am, started getting up with D a few times, by 5:30 was having ab pain, which is when he called us.  Then the nausea came...  but, that actually seemed to help.  Once he was able to get everything out, all started to settle.

Husband stayed home with him so I didn't have to take another day off and just called to say Stephen seems much better and is sleeping now.

But, I have to say, this morning, I really realized how much I've learned from all of you and how much it helped this morning!  After a moment of panic (call the ambulance NOW!!!! ), everything I've learned kicked in, started running the symptom checklist in my head and the panic subsided! :thumright: 

All seems to be good now and I can get on with my phone calls!


----------



## Clash

So sorry to hear Stephen isn't feeling well! I'm glad the 2nd opinion is still on the table!

I absolutely know what you mean about "moment of panic" and "running symptoms". C has had a great week or so but this morning he had a really strange bm(it was yellow liquid, sorry tmi) then he vomited, his stomach is gurgling loudly and there is pain. Alot of his symptoms don't match his previous flares so after the initial panic, I'm now in wait and see, "could be a stomach bug" mode.

Hope Stephen is feeling much better when he wakes up!!


----------



## muppet

Ugh, eating at a relative's was the worst for me when I was a kid with Crohn's. I always dreaded it because I KNEW I would get sick. 

Might be worthwhile to pack him a bag dinner in the future, or try to diplomatically tell the MIL that he needs things a particular way.

My family was never very sensitive to this until my alcoholic cousin's kids were all born with FAS and/or Autism and they all needed a special diet. Now my grandmother/aunts are all about accommodating special dietary needs. 

Oh wait, I was griping again, wasn't I?


----------



## kimmidwife

Tess,
I hope he is feeling better and this was just a little bump in the road!


----------



## Tesscorm

Thankfully, seems to be just a 'bump', just spoke with him and he says he feels a bit 'out of it' but no more pain or d. Told him to just keep sipping at water and have some broth or small light foods for now...  

I'm really convinced it wasn't really Crohn's that caused it but more the dinner. Amazing how much that dinner affected him - it was just meat sauce with pasta but the sauce was quite rich and had more oil/grease than I ever see with mine...  I'm assuming that's what did it???


----------



## CarolinAlaska

Tesscorm said:


> Thankfully, seems to be just a 'bump', just spoke with him and he says he feels a bit 'out of it' but no more pain or d. Told him to just keep sipping at water and have some broth or small light foods for now...
> 
> I'm really convinced it wasn't really Crohn's that caused it but more the dinner. Amazing how much that dinner affected him - it was just meat sauce with pasta but the sauce was quite rich and had more oil/grease than I ever see with mine...  I'm assuming that's what did it???


My daughter had severe flare just from McDonald's french fries and shake for 2-3 days.  Definitely food can do it.


----------



## Jmrogers4

Hoping it's just a "bump" and it is all out of his system and he can go back to feeling well


----------



## Sascot

Glad he is feeling better.  Certainly sounds like he really overloaded his stomach, so I hope it was just that!


----------



## my little penguin

Sending well vibes.... Your way


----------



## Twiggy930

Sorry to hear that Stephen was feeling ill.  Rich food does my son in every time.  It usually takes him out for the day he ate the meal and the next.  I almost dread having my son eat out these days.  Last meal that did it was a very rich macaroni and cheese.  Hope Stephen is feeling better tomorrow.


----------



## Tesscorm

Getting worried about Stephen   He had another episode last night.  Woke us up at 3:30 with ab pains, said it was quite painful all over but especially lower ab, he couldn't lie down or sit.  Felt a bit nauseated and eventually made himself vomit because he said it made him feel better last time.  Once he started, he was sick a few times, until all came out, I suppose.   No diarrhea this time, said he had a 'big' BM earlier in the day and had a bit of blood but thinks it's because it was 'big'.  Earlier in the evening, he'd had a normal dinner, played hockey last night, came home at 11pm, then felt a bit of stomach pain and thought he was just hungry.  But, again, had a very heavy 'snack' - I had some leftover frozen roast pork, portioned for enough for two sandwiches but he ate all of it in a bagel!  (His dad and I have both told him to keep his late night snacks LIGHT... )

He now told me he also had some discomfort Friday after dinner (AGAIN, a BIG, UNHEALTHY dinner - he at KFC!!! :ymad. No nausea or anything, just felt very bloated for the evening.

He has no other symptoms leading up to these episodes and, once they pass, he has no lasting symptoms! :ybatty:


I'm not sure what to think...  On one hand, I'm thinking every time was after a big, heavy and/or unhealthy meal...  but, on the other hand, I'm worried that it's related to narrowing.  Which might explain why no lead up symptoms (except for last night having a bit of stomach pain after the game), why it happens after big meals and, maybe, why no lasting symptoms.

Would 'narrowing' make sense?  Would there be no lasting symptoms once everything has been cleared out (whether by vomitting or diarrhea)?

I've sent an email to the GI's secretary but she's away until Thursday.  She left a forwarding number for the receptionist but, as Stephen's fine now, I'm thinking I can probably wait to speak with her on Thursday.

What do you guys think???


----------



## Crohn's Mom

Sorry Tess 

Personally, I think you could be on the right track with your thoughts re the narrowing. 
What you're describing is how Gab used to feel pre-surgery when she had the strictures. 

Hopefully Stephen will put 2+2 together and remind himself to eat smaller meals more frequently ! 
Teenagers - do they ever listen? lol


----------



## Jmrogers4

What were last bloods, could be narrowing due to inflammation and once that is taken care of it will go away and maybe all the rich food is causing some more inflammation.  Hope it all gets taken care of soon.  I hate waiting!


----------



## Clash

Sorry to hear this Tesscorm,  you might be right with narrowing, it makes sense. I agree with Jmrogers maybe inflammation causing narrowing. I hope you get answers soon.


----------



## Tesscorm

Well, since this GI has not deemed it necessary to run any bloodwork!!!, the last test results I have are from his GP in November...  and, at that time, all was good (best they've been since diagnosis).  

However, I am assuming bloodwork was done when he had his scopes a couple of weeks ago...  so, in my email I did ask for results from the bloodwork.  If for some reason none were done, then I'm going to request they be done now.


----------



## Clash

Does he scoff the food down? I'm just asking because I'm guilty of that, since childhood, and it has caused me some issues. I think C learned it from me and early on, right before dx, he would have those issues and I started noticing during those times he was scoffing his food down. We worked on it but it is a hard habit to break. Sorry, just thinking out loud.


----------



## Tesscorm

yes and no!  Unfortunately, he unhealthier the meal, the more he scoffs!   The dinner last night was pasta with seafood, he ate like a 'normal' person...  He probably scoffed down the pork sandwich in four bites, KFC or pizza he shoves in until he's full end-to-end! :ywow:  

I don't know why he eats this way...  during the day, he has a lighter appetite (ie for lunch yesterday, all he had was a yoghurt and two tangerines), dinner is normal and then his 'big' meal is at 11pm (and THEN has the 1000ml of formula!!!).  I'm sure the lighter daytime appetite is partly due to having the formula overnight but...!!!

I'm going to have him start a poop diary...  I'm not sure how narrowing would affect his BM schedule but...  just brainstorming here, I'm wondering if it takes longer for everything to go through and that's why he said yesterday he had only one big BM... (but he normally only has one, maybe two a day anyway...)  IDK...


----------



## Sascot

I don't really have any experience with narrowing, so not alot of help there.  It could just be his stomach reacting to rich/fatty food.  Hope it's just a case of too much food that his stomach doesn't react well to.


----------



## Clash

I don't know about the bm schedule either, sorry. C has 1 bm a day or every other day. and it is big, in fact I've wondered the same as you did earlier about it and the blood. A couple of times things have off he has went to more bms a day but not as often. Sending hugs and support your way.


----------



## my little penguin

Hugs Tess 
My mommy opinion would be narrowing.
Ds did a lot of vomiting early during flares so for him - it was stomach/duodenum 
Inflammation - but his MRI was clean
Hope Gi gets to the bottom of it.

Where are they at with the remicade???
To make him wait more than two weeks is ridiculous


----------



## Tesscorm

Really, we're NOWHERE with the remicade yet!!!  Remicade coordinator sent in application, then GI sent a summary of Stephen's condition plus his request for approval but, GIs letter wasn't sent until Jan. 25.  Coordinator said insurance company will need, at least, until  next week give an answer and, if I haven't heard by then, to call them.  But, she 'thinks' they will deny as Stephen hasn't used anything else.    She said that's not always the case but usually they want the imuran/aza/6MP/metho, etc. used first.  I'll wait until Monday, if I haven't heard, I'm calling.

And, yes, his MREs have said stomach and duodenum clean and, visually, those areas looked clean in the scope as well.

He's totally fine tonight and said he's been fine since we woke up. 

Sucks when you have to worry when they're not well and then have to worry when they look well!!!!! :voodoo:


----------



## Twiggy930

My son routinely feels bad after eating either really rich food or junky food.  He especially feels the effects of this if he eats the offending food on a very empty stomach.  He has never vomited when he felt like this but he tells me that he feels nauseous and he has lots of abdominal pain.  He seems to be able to eat the offending foods other times if he eats them not on such an empty stomach and if he eats a more moderate amount. 

Maybe this is happening because the food is just harder to digest and therefore causes some stomach upset and abdo pain.


----------



## crohnsinct

Hate to burst any bubbles but has he always eaten that way late at night?  If so, then I would lean towards inflammation.  If this is a new habit then maybe it is a diet, amount etc thing. There ya go bubble all back in tact!


----------



## kimmidwife

Tess,
Caitlyn also feels sick after rich food or heavy meals. I agree with crohnsintinct if this is a new way of eating for hi. Then sounds like the eating is causing it. If he has always done this then I would think it is crohns related.


----------



## Tesscorm

It's a bit of both...  the first episode, MIL's dinner, we very rarely eat rich food like that and, even more unusual, is that Stephen liked it and ate quite a bit; KFC - uggh, very fatty and, again, hubby and Stephen get a craving maybe once a year...  but, a big pork sandwich, grilling a steak, two large bowls of cereal, eating 1/2 a large pizza at 11pm or midnight... not really unusual.  We've told him eating these things that late at night are tough to digest for anyone! :ywow:  I vaguely remember he may have woken us once before with pain but it was quite a while ago and I don't remember if there was any connection with food. :ybatty:

Hopefully, I can speak with the GI on Thursday and see what he thinks.  But, if his labs are good...  what can the GI do?  We just had a scope, he had an MRE in December...  do you think another MRE should be done??  How would he determine if it's inflammation or scarring?


----------



## Sascot

I am not sure how they would tell the difference between scarring/inflammation on an MRE, I suppose it's worth asking the GI what he thinks.  Can't believe they haven't organised the Remicade yet!  Really unbelievable.  Does the insurance really think the GI would order a med like that if he didn't think it was necessary.  I suppose it's the same everywhere - silly rules that end up affecting our kids.  Andrew was borderline for being able to tolerate Aza but they couldn't put him on 6mp until he had failed Aza!  So his poor liver had to go through the roof before they are willing to try a different med.   Sorry, didn't mean to rant on your thread. :ack:


----------



## Tesscorm

Rant away!!   A few little releases might stop the big blow-up!! :lol:

Hopefully, I'll hear something from the GI tomorrow...  I don't believe he's in the clinic on Fridays so, if not not tomorrow, will have to wait until next week.


----------



## EthanClark

Tess,
I have Crohn's with quite a bit of stricturing and his symptoms sounds alot like how I feel after eating. Mine are bad enough now that it is almost every meal that I feel this way. My labs look good though, just had them done. My pain has to be from the stricutres. Smaller meals and really good chewing of food can help some. Good Luck


----------



## Tesscorm

How does your GI determine that it is scarring opposed to inflammation causing the narrowing?  Is it just assumed to be scarring as your labs look good?  Are there any tests (ie MRE, CT, etc.) that can differentiate between narrowing caused by scarring or inflammation?  As far as I know, imaging cannot differentiate??

Also, do you find that the stricturing has any effect on BMs...  once he had diarrhea, the next no BM impact.

Sorry for bombarding you with questions!


----------



## EthanClark

Tess,
No need to apologize at all. When I had my colonoscopy the dr could see a very bad stricture and couldn't get any further into my intestine. We tried to do the pill cam test but the pre test capsule got stuck in my stricture for a week before it dissolved so we weren't able to see above where that first stricture was. I have had an MRCP because stricturing was found on an ultra sound in my liver bile ducts when they were looking at my gallbladder. My labs have been worse in the past but are pretty good now. I have recently switched dr's to get a second oppinion and try to get LDN prescribed and he told me that with stricturing crohn's disease it is alot harder to treat than with inflammation crohn's. He seemed pretty sure that I have the stricturing disease. I am guessing because i also have stricturing of my bile ducts that they are pretty certain. I also have chronic bronchotos and do not want to take the meds that they want me on so I am going to start the LDN. I couldn't get a script but the doctor told me how to order it online and I will compound it myself to give it a try. I have had symptoms for about 16 years now but recently they have gotten alot worse. i attribute this to the stricturing getting worse. The doctor said that I will eventually have to have a bowel resection. I am hoping that I will get another 20 years before that happens. I wish I had better information on how and why they are certain mine isn't just inflammation. Also sorry about the crazy long post to try and explain things. I hope some of it helps. Good Luck :hug:


----------



## EthanClark

Tess,
I forgot to answer about the BM's. I usually have the big D but occasionally will have a day or two without. I always have extreme urgency with every BM to the point where I alomst have an accident daily. I will also bloat to the point where I look 6 months pregnant, usually this is when I get most nauseaus. I think that is when food is blocking my stricture. When it moves through I tend to feel better. :ybiggrin:


----------



## Tesscorm

EthanClark, thanks for all the info.  Stephen's been fine so far but has also been eating light... hopefully, I'll some direction from his GI.


----------



## Tesscorm

We got the remicade approval in the mail yesterday.  I was going to start a new thread but, I'm not sure I can start it on a positive note so thought I'd wait...  so as not to jinx anything! 

I know I should be super happy that the approval came in and, given what's been happening this last week, we obviously need to do something but...  it's just one more step deeper into this crohns world in which I want no part!!!  :ymad:

But, I am trying to be positive about it...  we need to do something and I know I wouldn't be any happier nor any more comfortable with any of the other usual crohns meds so...  remicade it is.

Just like the diagnosis, I know it just takes time to get used to the idea and adjust and, no doubt, I'll be fine with it soon...  think I just need some wine to dull the raw edges for now.


----------



## Crohn's Mom

Happy that you finally have the approval but I also understand the hesitations. 

Get a straw for the wine bottle and have yourself a moment  

This is going to do great things for Stephens health - I just know it !


----------



## Jmrogers4

We'll join you with a bottle of wine.  Just think about how he is going to feel so much better.  Glad it finally came through and you can finish with that waiting game.


----------



## Clash

I'm glad the Remicade approval came in, I do understand your trepidation. Enjoy your wine, drink some for all of us and that should put you in a right state! HA! Seriously, I hope Stephen continues to feel better and vent away if you need to!!


----------



## DustyKat

Hey Tess...:hug:

So many ups and downs for you and your boy.  So good to hear the approval came through but I do hear you on how bittersweet this can be. 

Re the MRE: 



> Role of Magnetic Resonance Enterography in Differentiating between Fibrotic and Active Inflammatory Small Bowel Stenosis in Patients with Crohn's disease...
> 
> Abstract:
> 
> Objective: To assess the diagnostic accuracy of magnetic resonance imaging (MRI) in prospectively differentiating between fibrotic and active inflammatory small bowel stenosis in patients with Crohn's disease (CD). Materials and Methods: A total of 111 patients with histologically proven CD presenting with clinical and plain radiographic signs of small bowel obstruction underwent coronal and axial MRI scans after oral administration of polyethylene glycol solution. A stenosis was judged present if a small bowel segment had >80% lumen reduction as compared to an adjacent normal loop and mural thickening of >3 mm. At the level of the stenosis, both T2 signal intensity and post-gadolinium T1 enhancement were quantified using a 5-point scale (0: very low; 1: low; 2: moderate; 3: high; and 4: very high). A stenosis was considered fibrotic if the sum of the two values (activity score: AS) did not exceed 1. Results: A small bowel stenosis was identified in 48 out of 111 patients. Fibrosis was confirmed at histology in all of the 23 patients with AS of 0 or 1, who underwent surgery within 3 days of the MRI examination. In the remaining 25 patients (AS: 2-8), an active inflammatory stenosis was suspected and remission of the obstructive symptoms was obtained by means of medical treatment. One of these patients (AS: 2), however, underwent surgery after 14 days, due to recurrence. MRI had 95.8% sensitivity, 100% specificity, and 97.9% accuracy in the diagnosis of fibrotic stenosis. Conclusion: MRI is reliable in differentiating fibrotic from inflammatory small bowel stenosis in CD.
> 
> Full Article: http://www.clinicalimagingscience.org/article.asp?issn=2156-7514;year=2011;volume=1;issue=1;spage=35;epage=35;aulast=Fornasa


I hope that helps hun. :heart: 

Dusty. xxx


----------



## Tesscorm

That's great!!!  Thanks Dusty!  (Hope all is well with you! )


Tagging xmdmom - though you might be interested in the above article...  you were asking a similar question a few days ago re inflammation or scarring in an MRE.


----------



## Twiggy930

Glad to hear the approval came through!


----------



## Sascot

Finally!  That's good the approval came through.  Definately time for that glass of wine, will be wishing for one of those as I finish my cup of tea


----------



## my little penguin

Woohoo!!!
Now give yourself time to grieve again.
It was hard for us and DS had tried all the other meds.
It takes time you will get there.
I have done a complete 180
And now am begging to keep him on it.


----------



## awmom

So glad to hear they finally approved the remicade.  I know it's been quite a rollercoaster ride for you so hopefully this will work quickly for Stephen.....Here's to you both feeling great soon!!!  If it's any consolation re starting Remicade, I wish they would have recommended it sooner for Nico (though I too would have been completely scared)....perhaps he wouldn't have gotten the stricture.  Wishing you both all the best.


----------



## Farmwife

I'm glad things will get moving.
Hang in there mom, we're here for ya!


----------



## Tesscorm

Exactly as you said, MLP...  I know I just need to let this become part of another 'new normal' and I know it will, just don't like these adjustments! :voodoo:

But, being Valentines Day, the blow is being softened by wine, roses and cupcakes (okay...  I bought the cupcakes! :redface

:ghug:  Once again, THANKS *EVERYONE*!!! :ghug:


----------



## my little penguin

Ok everyone road trip to Tess's house
Wine and cupcakes that I so need right now.


----------



## Clash

Woohoo...road(air)trip, wine and cupcakes!!! Don't have to tell me twice!


----------



## my little penguin

No air your son can drive while we stop along the way picking everyone up eating cupcakes with adult beverages 
So it could take a few weeks to get to Tess on e we pick everyone up but I am willing to eat a few extra cupcakes along the way. :ybiggrin:


----------



## Tesscorm

DRIVE----  too long!!!


Ooooh, in the name of my hubby, Emily and Stephen, I unselfishly bought LOTS of cupcakes - red velvet, vanilla buttercream, chocolate truffle, toffee/chocolate and peanutbutter chocolate!!!  Lots for everyone!!!  Woohoo! 

Hmmm, we have a bit of snow???...  I'll see if I call call out the National Guard for CIC!


----------



## Clash

Ummm...I don't let C drive me, I don't even let my older daughter drive me, it is best for all of our sanity!!! I'm not flying as that would require too many valium and I wouldn't be able to enjoy the cupcakes or the wine...well I might have some wine with the valium to ensure I am completely knocked out...hmmm...I'll do the wine then C can drive and I'll be able to enjoy the cupcakes...yay roadtrip!!!


----------



## Tesscorm

As long as you don't start hanging out car windows with a bottle of wine in one hand and a cupcake in the other!!!


----------



## my little penguin

No cupcake in the mouth with a wine hat to hold the wine
Or maybe a pump backpack :ybiggrin:
Both hand free


----------



## Jmrogers4

I'm in favor of getting one of those big luxury buses and let someone else drive


----------



## Tesscorm

I can just see it!!! :rof:


----------



## Tesscorm

WAIT!!!  I think I need one of those wine pump backpacks when I take stephen to his first infusion!!!  :yfaint:


----------



## my little penguin

That is what we are for
Just take your fancy city phone 
And update us 
It
Helps trust me


----------



## Clash

OH YEAH... I'm familiar with the backpacks because my college daughter bought one for springbreak last year!!!! Oh that child 'o mine!

I like the luxury bus idea!!


----------



## Farmwife

GREAT idea!:rosette1:
That way when y'all are pulled over for lewd conduct, your in one vehicle.:soledance:


----------



## Jmrogers4

They have those dark tinted windows so you couldn't see inside, we could be like rock stars.  Every body wondering what famous person was on that bus


----------



## Clash

And of course we would be the famous people "The Real IBD Parents of The Crohnsforum" or "Desperate IBD Parents"...we may have to work on the name but...what a ride!!!


----------



## Farmwife

Oh I'm sorry:ybiggrin:. I should have said.....lewd conduct AFTER being pulled over for drunk driving. That poor cop, he didn't stand a chance:ack: with all the drunkards wherein strange backpack.:ywow:


----------



## my little penguin

Ooh I like it....
Just be sure to stop at all firehouses


----------



## Clash

MLP How else are we gonna get CIC to come along...wine and cupcakes aren't going to get it done but we throw in some firemen and we're golden!!!!


----------



## Clash

Do all of you guys notice how a thread explodes every time we discuss traveling...I think we are all in bad need of a vacay!!!! Well, except maybe Tesscorm who has been cruising her life away...


----------



## Jmrogers4

They have poles in those firehouse too, don't they?


----------



## Tesscorm

Nothin' to worry about...  Those party buses have poles, tinted windows, flashing lights and cup and bottle holders!  AND, to alleviate FW's woories and guarantee CIC's participation, we'll bring along Dutch941 who is a patrolman WITH a uniform:wink:!!!  

Girls.!.!.!  We are SET!!!  utahere::beerchug: :dance: :beerchug:


----------



## Twiggy930

Yes! Another road trip!


----------



## CarolinAlaska

There is a party every night with you gals!


----------



## Sascot

Oooh party! :dance:.  My new year resolution was to have some fun this year, so I'll be there!


----------



## Dexky

Tesscorm said:


> Just like the diagnosis, I know it just takes time to get used to the idea and adjust and, no doubt, I'll be fine with it soon...  think I just need some wine to dull the raw edges for now.


Amen to that Tess!  Every time they change something, it feels like starting all over!  Sorry I missed the party!!!


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## crohnsinct

YES!  Some of those busses do have poles!  I know!  And dancing firemen...don't ask.  

I'm in but since I live up north no fair cuz by the time you girls get here I am sure there will be no more wine left, no room on the pole and the poor fireman will be all tuckered out.  So if you don't mind Angie and I (and all our other northern friends) will just start partying with the national guard while we wait for you to pick us up!


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## Dexky

crohnsinct said:


> YES!  Some of those busses do have poles!  I know!  And dancing firemen...don't ask.


On second thought…maybe I'm not so sorry I missed the party!!  Pole dancing firemen!!  I don't think it's my kinda party!


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## Tesscorm

Come on Dexky...  there's always room for one more 'uniform'!  

You must have some sort of uniform lying around!!!  :lol:


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## Dexky

Hahaha, yeah, I could be the pole dancing UPS man I guess…but I'm afraid I might injure myself!!


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## kimmidwife

Tess,
 I finally had a chance to catch up. So glad the remicade approval came through. When is the first infusion?


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## Tesscorm

Haven't heard.  Left a message for GI on Thursday but their office is closed Fridays and tomorrow's a holiday here...  won't hear from him until Tuesday, at the earliest.

Still have to check a couple of things with the insurance...  the approval is a bit confusing (but 'normal' from what I've heard), the actual medication is covered but only up to their 'estimate' but they don't give their estimate???  Also, administration (the process of infusion) of the remicade is not covered???  But, apparently is covered by some other agency???  So, still have to check into it a bit... :ywow:


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## kimmidwife

That sounds like a weird and confusing process. It seems like all these beaurocracies like to do is confuse people.


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## Tesscorm

I know!!! :ybatty:   I'm going to call the insurance company but also speak with my friend who's daughter is on remicade...  she's already gone through all this red tape so will, hopefully, have some advice for me.


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## my little penguin

Hugs I know before DS 's first infusion
We got an answer like " it should be covered but they couldn't guarrentee until a claim went through" talk about nerve wracking .


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## Tesscorm

OMG?!?!?  How can they give you an answer like that???  Unbelievable what insurance companies get away with???  A while back I contacted our insurance company about travel with crohns, if it was an issue, etc.  They told me, as far as pre-existing conditions, if there was an incident, if the incident was accidental or completely unexpected, it would be covered.  When I questioned further regarding 'completely unexpected' and that would qualify or exempt that condition, I was told it would be determined on a case-by-case basis so, basically, there was no set criteria...  so, does it all depends on someone's mood that day?!?!


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## Sascot

Insurance does sound rather confusing.  Hope it all gets sorted out.  It's frustrating when getting things done quickly and simply depends on whether the person in the office at the other end can be bothered that day or not.  It's so nice to get someone who is helpful and polite!


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## Tesscorm

Stephen's first infusion is Wednesday!  Why is it when you want delays, everything goes at the speed of light!?!?  The insurance issues were actually so much easier than I thought, booking the apptmt was easy, my husband's going to take him, etc.  

God, I literally feel sick to my stomach and I've got a huge lump in my throat!  Ugghh!!!  It'll get easier, I'll adjust...  Can I just drink myself silly until I reach that point?


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## EthanClark

Tesscorm-
I am so sorry you have to deal with this. Not an easy thing I am sure. Drinking yourself silly may help a little  I wish you all the luck and Stephen will be in my thoughts.


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## awmom

I know the feeling exactly....it takes a while to process each new step (that's why when the time is near we always wish we had MORE TIME!!).  You will adjust, and in the meantime, if you can't drink, breathe!!!  Stephen will be ok and you are doing, after much research and soul searching, what has been recommended and is needed to stop any progression. Hope all goes well with his first infusion.


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## Sascot

Thinking of you.  Hope all goes well - I'm sure everything will be good.  A few nice chilled glasses of wine sounds like a good plan!


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## Clash

I'm with you on the drinking myself silly! My thoughts are with you!


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## Jmrogers4

Hang in there.  Enjoy a glass of wine and a bubble bath and relax.


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## my little penguin

Hugs ...
I made DH text me throughout the first few before I relaxed .
Of course ... When he was trying to tell the nurses all the drugs etc..,
I kept texting wanting updates .  pps:


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## Tesscorm

Yep, I'm sure I'll be calling my husband...  'how is he?', 'is he flushed?', 'is his throat itchy?', 'DID I HEAR A COUGH? ', 'are you SURE it wasn't him, are you in the same room?', 'even after they let you leave, stay in the car for an extra 15 minutes...  just in case!  MLP's son got a a bit of a reaction when they were almost out the building, SHE WENT BACK!'  :lol:  He may be the one needing a few drinks afterwards!

Still feeling sick at the thought of it all (why do ANY kids have to get sick?!?!? :ymad but I'm trying not to think about it!   Actually, trying to remember all the reasons why this is a good thing! 

(Ugghh, just got home from a borrriiinng business dinner/meeting and now my daughter needs help with accounting!  Fun, WOW! ...  at least, it's something else to think about!  Will have to catch up all else tomorrow... :ghug


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## kimmidwife

Sending hugs and good luck tomorrow. That really did go through fast after all that. Keeping my fingers crossed. Have they talked about pre medicating him to prevent a reaction? Caitlyn had to take Tylenol one hour prior to arrival and then they gave her IV Benadryl before the infusion.


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## Tesscorm

Did ask about premedication and nurse said GI prefers not to if it's not necessary (he's worried about adding unnecessary drugs!  Seriously?!?!? :yfaint  He will add premeds if/when there's a reason...


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## S mom

Good luck!  We had all of 2 days between deciding to start Humira and my son giving himself the first shots!  Everything just fell into place super fast - gasp!  
I was a big mess of nerves, it was hard not to build it up and think of the worst case scenerio but now that he's done it a few times I'm relaxing... a little... but a big glass of wine and a distraction (like helping with 'accounting' - lol) are always good 
Here's hoping for an uneventful day!


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## Jmrogers4

Thinking of you both today.  Good luck


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## muppet

I have never heard a doctor argue against premedicating before. That's a new one on me.


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## Tesscorm

S mom said:


> Everything just fell into place super fast - gasp!


Yeah, why is that??? :ymad:  :lol:  Never did hear back from the GI regarding Stephen's d, vomitting, etc. the other week yet I've had lots of calls, voicemails, email confirmations, CDs, information booklets, etc., etc. re the remicade! :voodoo:  They've been so efficient it's scares me !  :lol:


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## muppet

Centocor gives big incentives to doctors who prescribe and administer Remicade, is my very strong suspicion based upon similar (and even more suspicious) behavior at our local children's hospital, which was a factor in our decision to switch to a larger research based hospital.


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## Tesscorm

Actually, the efficiency is not coming from the GIs office...  

(okay, the way I've understood it...  and once you read it, you'll understand why I thought it was going to be a complicated process...:ack

Not sure if it's done the same elsewhere but, here...  I was assigned a rep from some agency that is the liason between me and everyone else (not even sure who or what the company is ), she sent in the insurance claim, sent me a CD describing the infusion, information booklet, got prescription from GI and arranged for pharmacy to deliver to infusion centre, etc.   Here, remicade is administered at independent infusion centres.  

The actual medication is covered by insurance but the administration/infusion of the medication is NOT covered by insurance.  The administration is also NOT covered by the provincial healthcare unless it's done in a hospital setting (however, remicade is administered outside of a hospital because, if IN a hospital setting, the insurance refuses to pay for the medication as anything done in the hospital should be covered by the provincial healthcare). :ybatty:

So, when I asked about this admin cost (because, somehow, the clinic's costs must be covered, right?), I was told there would be no cost to me.  hmmm??? so who's paying the rent, the nurses, the doctors, etc....  not provincial care, not insurance...  must be the drug companies?  Hence, the efficiency!  No criticism intended towards the drug companies - but they are working to generate a profit, unlike our provincial healthcare that runs over budget ALWAYS, has long waits, not enough doctors/nurses, etc.


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## Tesscorm

Okay, just shoot me now...  Stephen's got a cold, eyes are glassy........ :yfaint: :ack: :ybatty:  I've told him a million times to make SURE he stresses to the nurse tomorrow that he has a cold, that he has a bit of phlegm, etc.  Will be taking his temperature tonight and tomorrow morning... :voodoo:


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## Clash

Awww, Tesscorm, I know it is just one more thing to add to the stress and I am so sorry! I was the same way last week when they gave C an early Remicade treatment in hospital I think I told everyone who would listen including the nice janitor lady that came in to bring new towels that he had some kind of funk or creeping crud. It all turned out well and I got to hear about the janitor lady's nephew that is at culinary school(how'd that happen?) I hope the cold is nothing to worry about and he is feeling better soon!

Good luck tomorrow, you will be in my thoughts! Sending hugs your way!


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## my little penguin

hugs Tess
Ds had remicade infusions with colds and strep while on abx

It will be ok in the am.


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## Tesscorm

No fever :thumright: but sneezing, shiny eyes, etc. Hopefully, its just a bit of a bug and will be lessening by tmrw...  But, I do remember lots of kids going with colds. Etc. Think I'm more concerned if there's fever...


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## CarolinAlaska

I'll be praying everything goes well and that he wakes up healthy with no more cold symptoms...


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## jordan29

Hope everything goes ok Tess Jordan in onto his fourth infusion on 11th of March and his consultant told us last week he is now in remission bloods perfect first Time in nearly 2 year so try to stay positive about Stephen I'll be thinking and praying for him xxx


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## awmom

How did it go!?!  Been thinking of you guys and hoping all went well.


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## Twiggy930

Hope it all went well today.


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## Farmwife

I had to forgo some sleep and hop on here and see how's it going. :biggrin:
I hope all goes well and he feels good about his decision.
I hope you feel good about the decision too but I know that might take awhile.:wink:


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## Clash

Tesscorm, I hope all went well. Been thinking of you today!


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## Jmrogers4

Waiting to hear how it all went.  Thinking of you guys


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## Tesscorm

Thanks everyone!!!  All went well!!  :banana:

Nurse said his cold wasn't a problem.  He played online computer games, said the nurses were very nice and that there was another boy there, his age also having his first infusion for crohns (unfortunately, they didn't have a chance to talk...)  AND he answered my numerous _'how r u?'_ texts! :ack: 

Had a bit of a breakdown when my husband said he just left Stephen once the paperwork was settled eek: Did he not hear ANY of my dire warnings of what could happen!!!)   outahere:momma's coming! :lol  But, it seems he managed just fine! 

Thanks guys for holding my hand all the way through this!!!! :Karl:


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## my little penguin

Glad it went well!!!
Long may it continue


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## Farmwife

:ywow:Your hubby left him????????????? Forget about about mama coming...it's  Crohns forum's coming!!!!!:ack:

Still I'm so happy it went well. I hope you sleep well tonight!:wink:


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## Clash

So glad it went well!!!
C and hubby were much more laid back about the first infusion than I was isn't that always the way!!!


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## Tesscorm

Yeah, it is...  Hubby said 'he's 18, he doesn't need me there.'  but I said that '18 will quickly turn to 8 if he has a severe reaction at his first infusion and there's no one there that he knows!!! :ymad:  Oh well, all turned out well 

But, yes, seems guys (young and old) are much more relaxed about it all... 

_...shhhh, my friend takes her daughter to the same centre, maybe I'll schedule Stephen's apptmts to coincide, then I'll know a 'mama' will be there! :lol:_


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## Clash

haha!!! That is a good plan!! Covert Mom plan, I like it!!


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## upsetmom

Glad everything went well


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## Sascot

So glad everything went well.  Would have had a fit at my husband too had he done that :ybiggrin:.


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## Maree.

I disagree with your husband totally I think whether your 8 or 80 or anything in between it's horrible going for a significant medical procedure on your own.  At the moment your the obvious support person to attend, in time our kids will hopefully find other people to fill that role at least some of the time.

I read with interest a post by a 20 something on the forum about trips to casualty he mentioned he always takes his brother, which I thought was great, I hope one day my children will be able to lean on each other for support with things like that.  Particularly as it's unlikely they'll live in the same country as us once they finish High School.


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## Dexky

Yeah!!!  Damn men!!


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## Johnnysmom

Doesn't hubby know that he has to stick around for your peace of mind, not necessarily Stephen's?

Doesn't he know how hyper vigilant crohn's mommies are?????:runaway:   (Dexky, we consider you a hyper vigilant crohn's mom)


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## awmom

Glad it all went well!!!


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## Tesscorm

Just thought I'd share something...  once in a while, Stephen's surprised me at a GI apptmt by asking a very specific question or knowing certain terminology but, this morning, I realized that he really does listen!    While the outward signs may be eye-rolling, sighs and lots of _I know!_s as they walk away :lol:, the knowledge and example you share with your kids *DOES *sink in...

On the drive in today, Stephen was talking about yesterday's infusion and asked me how the GI was going to determine if remicade was working??  He said his blood levels were normal last time so those couldn't be used and that he wanted an MRE!  I told him we/I needed to schedule an apptmt for a 3 month follow-up and we could ask then, Stephen said he didn't want to wait 3 months for the apptmt and then ANOTHER 3-4 months for an MRE, that the remicade might not be working, inflammation continuing and we wouldn't know for 6 months.  He wants me to call today to book the MRE before the apptmt so we can discuss the results at the 3 month apptmt!  :worthy:  He's listening and learning (and even beginning to advocate)!!!! 

Unfortunately, I had to bring him into reality and explain that I could not just call and book the MRE and there's no way the GI will do that until the follow up so....  patience is the next lesson!


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## my little penguin

Doesn't hurt to ask about mre


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## Tesscorm

I agree but I'm 99% sure they won't book the MRE until the GI sees him...  but, it won't hurt to ask if we can book an MRE now...


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## S mom

Glad to hear it went well... and that every once in a while our teenaged kids show signs of amazing adult maturity and understanding in all this - congrats on showing him the way!


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## CarolinAlaska

So glad it went well!  I'm in shock that he got left to face it on his own, but so glad nothing went awry!  Your young man is showing himself the man he is becoming!


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## Tesscorm

Yeah, my husband and I sometimes differ on what we think is acceptable for them to handle on their own...  I think, over the years, it's led to a good balance but, at times... :ymad: :ack: :voodoo: 

I have also wondered if, to a degree, it's how my husband deals with the crohns.  I think he doesn't like to believe it _can _be as serious as it is (ie remicade infusion risks and the fact that, regardless of the risks, we still have to give it to Stephen).  It can be frustrating at times but...  I suppose we all deal with it as we can.


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## DustyKat

Well hush my puppies and prune my magnolia's! What a ride! :hug: 

I am sooooooooooooo relieved to hear that all went well Tess......and that Stephen is starting to advocate for himself! Well done Mum! :medal1:

May the good times keep on keeping on. :heart: 

Dusty. xxx


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## Crohn's Mom

I'm a bit behind Tess :ybatty:
But, sooooo happy that his infusion went so well !! :dance:

I think it's great that your husband is involved in Stephens care.  I'm sure it drives you crazy when he does things like going against your hypersensitive mommy intuitions tho :rof: .  
I wish sometimes that I had someone to trust enough to tag along to one of the doctors appointments with them instead of, know it all, me :lol:
I'm sure my husband would take one of them, if I'd let him....:eek2:

I think it's a good balance for you :hug: 
Guys just have a different way of dealing with things like this, especially with their sons.


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## Twiggy930

Super glad it all went well.


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## Tesscorm

Crohn's Mom said:


> I wish sometimes that I had someone to trust enough to tag along to one of the doctors appointments with them instead of, know it all, me :lol:
> I'm sure my husband would take one of them, if I'd let him....:eek2:



It's tough for either of us to take time off for all the apptmts so we usually split the apptmts so that he does the tests (MREs, ultrasounds, remicade, etc.) and things like sports-related physio and I do all the doctor apptmts.

:lol:  I would never let my husband take Stephen to a GI apptmt WITHOUT me! He would never ask as many questions as I do, I'd end up with more concerns than before the apptmt!    And...  I'm way too much of a control freak to not be at the apptmts - it would almost be like sending Stephen on his own!  :lol:

Case in point, Stephen came home from the infusion last week and said 'oh, yeah, the nurse said my GI is the most aggressive she knows at fighting crohns and even when other GIs would stop, he keeps going.'  WTF?!?!?  What does THAT mean???   I asked him 'Did she mean that in a good way or bad? What do you mean other GIs would stop?  Why would they stop and not your GI?'  His answer...  'oh, I don't know, it was just conversation.'  :yfaint:    

......am seriously considering going to the next infusion myself! :ybatty:


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