# Duodenum Inflammation



## Crohn's Mom

Hi all..

So here I find myself sitting in a hospital room, getting settled in to spend the night once again; except this time, it's not with Gabrielle, it's with my middle son Austin (he's 18).

He called me yesterday and said his stomach was hurting really bad, but when I started asking specific questions, he said it was "no big deal".
So then today, it was the same thing.  Then he proceeded to tell me that he hasn't eaten in 2 days, and was up all night from the pain.  I convinced him to let me bring him to the ER.

We got here this afternoon and they ran bloods, urine and a CT scan.
They said the bloods looked "fine" and his WBC is (only) at 12.
They were looking for possible appendicitis on the CT, but said his appendix is fine but that he has a lot of inflammation, and especially his Duodenum is inflamed.  The doctor immediately said that they were going to admit him to control his pain and get a GI consult tomorrow.

I told the doctor (after the CT results were in) that his sister has Crohn's disease and I thought that now that may be important for them to know.
This idiot looked at me and said well we don't have to worry about that because this isn't a Crohn's issue, and that's not where Crohn's is found. HA !
Yes, I promise you all I gave him an ear full and a bit of a "schooling" on how wrong he was.  He looked at me and said, oh ok I apologize. :ybatty:
Needless to say, his attitude towards me was much less arrogant after that. :lol2:

Anyhow, so now we wait till tomorrow to see what the GI thinks and where she wants to go from here.
They are keeping Austin comfortable with IV pain meds, Dilaudid every 4 hours, and also Zofran for the nausea and Protonix to help lesson the acid in his stomach since his Duodenum is involved.

I have convinced him ( I think?) that if the GI doc wants to keep him a few days and do some tests since they already have him, then I think that's for the best.

He looked at me earlier and said "Mom, do you think I have Crohn's?" and I said, Honestly son? Yes I really do and I'm sorry. 

Here we go again....

edit: oh, and he's since started to run a fever since we've been here as well.  It's at 99.7 right now.


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## Catherine

Sorry to hear.  Hopefully the hospital will get him settled quickly.

Am sure that being in hospital will help with getting answers faster.


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## poppets mum

:hang::hang:Oh no everything crossed here that it isn't Crohns.


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## upsetmom

:ghug:..I'm so sorry to hear this. I hope its not crohn's.


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## my little penguin

Hugs
Hoping for quick answers for you and him.


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## Farmwife

Hugs, hugs, hugs!


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## Dexky

Sorry T!  I know JJ's had problems but is this the first sign with Austin??


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## xmdmom

Tried to send a bunch of hugs, but I guess this forum has a limit of 1!
Sending healing thoughts your son's way.


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## crohnsinct

Well sounds like he has just the mama for the job!  Thank goodness you are on top of it.  Praying for the best possible outcome and his comfort.


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## Crohn's Mom

Thanks everyone  

No Dex, Austin started having test done bout 2 years ago. He got so fed up and angry tho that he refused any more doctors :/
Tough guy syndrome


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## DustyKat

Oh man T...:hug::hug::hug: 

Thinking of you mate and thinking of what you are feeling right now. :heart: 

Dusty. xxx


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## Jmrogers4

oh Goodness, sorry.  Hope you get answers quickly. Sending lots of hugs.


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## Twiggy930

(((Hugs)))


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## Livilou

So sorry to hear about your son.....I am praying it's not Crohn's...hang in there!!!!


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## Tesscorm

So, so sorry you and Austin are facing this!!!  You know I'm thinking of you :ghug: and sending lots of wishes that it does NOT turn out to be crohns!  Hope you begin to get some answers quickly.

Stay strong! :hug: :hug:


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## Crohn's Mom

GI doc called and her office is booked today, but she will be at the hospital between 1 and 7 to do an upper endoscopy. 
He's still in a lot of pain this morning, but that doesn't surprise me since he's not being "treated" for anything specific yet - pain meds are helping for the most part tho. He's also still very nauseas even with the Zofran.


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## Crohn's Mom

Oh - question:
If he had an obstruction/perforation that would have showed up on the CT scan correct?? 
He hasn't had a BM in a couple of days and he normally has D.


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## my little penguin

Are they going to do an upper and lower to rule things out?


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## Crohn's Mom

Just upper as far as I know. 

A on call doc at the hospital was just in and looked over the ct scan and said there's an extensive amount of inflammation around the duodenum and between - ? - dang it we can't remember what he said. We're gonna ask for a copy of the report from the next nurse that comes in. 
He also asked if he's ever heard of or been screened for Crohns - ....


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## Tesscorm

but glad he's being checked...    :ghug:


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## Niks

Hope they find out what is going on quickly and get his nausea and pain under control.


(((HUGS)))   :ghug::ghug::ghug::ghug::ghug:


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## Crohn's Mom

Well he came through the procedure just fine - which is always nice  

Doc said he has ulcers - lots of them - in his stomach and top of the small intestines. 

They're keepin him tonight to watch him and start new meds - it's two dif PPI's and something called Gascon? (To coat the ulcers) 
She said she took lots of biopsies - so now we wait. 
She wouldn't even mention the word Crohn's to me - just says "I don't know where those things came from but we sure do need to treat them" 
Good lord - what are we in kindergarten now ?! LOl 

I think we all know where this story ends ... But I'm happy to live in denial a few more days


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## Tesscorm

Glad the scope went well!

Hopefully, the meds will, at least, get him feeling a bit better while you wait.

Sorry it seems to be pointing in the crohn's direction! 

:ghug: :ghug:


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## my little penguin

:ghug: Sorry to hear--
Just not sure why they didn't do both ends while they were in there to avoid the extra anesthesia later KWIM.:ybatty:

hope the biopsies come back quick.

Have you called for the 2nd opinion GI yet


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## Crohn's Mom

LOL MLP I'm right on board with your thinking - 
I just told my husband we will wait on biopsies and then I will transfer docs. I can't stand this hospital affiliation here - or most of the docs in our town  

Gabrielle is scheduled for bloods, stools, and a colonoscopy on Wednesday at her docs. I have already requested from the nurses to have copies of All tests before we leave here. I plan on taking them with me to her docs and setting up an appointment with them while we are there. 
(I'm just pretending to be In denial for a few days  )


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## my little penguin

See I knew you would be on top of IT:medal1:

De NILE is a deep long river - I travel it often:lol2:


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## DustyKat

Thinking about you T, soooooooooo much! :ghug: 

Is the other treatment Gaviscon? 



Crohn's Mom said:


> Oh - question:
> If he had an obstruction/perforation that would have showed up on the CT scan correct??
> He hasn't had a BM in a couple of days and he normally has D.


It depends T. If he had inflammation in the TI it can sometimes be hidden due to the lay of the bowel. Inflammation can also hide features. You know Sarah's history with tests but CT was able to visualise his TI but the inflammation masked an abscess but they were able to pick up the telltale sign of a perforation...air outside the bowel. The other thing to bear in mind is if Austin is lean, which he is yeah?, CT is not as sensitive as it is in those with more body fat. 

Sending tons of love, luck and well wishes across the pond! :Karl: 

Dusty. xxx


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## Crohn's Mom

Yes, Dusty I believe that's what it's called. I think I'm confusing myself because it's a pill you actually swallow and not chew. 

Yes, he is very lean. 6ft1 and only 156 pounds now. I think I remember you explaining before about the ct and being lean like that. 
The GI doc did specifically say that there was a lot of inflammation in the TI but "nothing was blocked" so I was relieved by that somewhat. 

Austin's pain has definitely lessened now with the acid reducing meds he's been on so thats nice to see. However, it was nearly immediate pain after eating last night for the first time in days. He's going to have to do a low residue or brat diet until further notice (that's dr. Mom talking LOL)

We're waiting on the doc to make his rounds this morning and he may be released. The only reason he may not be is due to him spiking a 100.7 fever last night :/ 

Thanks for the support everyone! 
I have had the most stressful last 3 months of my life and I keep wondering when it's going to slow down. 
Keep calm and carry on right ! 

It's such a nice feeling tho to know that even tho I have (negelected) supporting others here lately due to my own personal life, I know I can turn here still and you're all waiting with open arms


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## Clash

Just saw this thread can't believe I missed it. I just wanted to send hugs and support!!


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## littlemissh

I hope he gets better soon, and gets out soon.

I hope he doesn't join the GD Crohn's group though. Can I ask, is Austin white caucasian?, I was told by St Marks Lead IBD consultant 2 weeks ago that I was almost unique being a white caucasian with severe GD Crohn's...just wondered if that was actually true.


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## crohnsinct

Oh my gosh!  We love you T!  Still holding out hope that those ulcers are from something else! :ghug:


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## Jmrogers4

Checking in to see how Austin is doing, hope it goes well and he gets to go home.  Just wanted to send loads of hugs your way


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## Crohn's Mom

Ok that med was called Carafate Dusty.

He is now off of it and they're going to start him on Entocort.
They're actually going to break it open and mix it in with a bite of applesauce so that it will hopefully treat all the ulcers in his stomach, as well as his TI.

This momma right here finally spoke up, in the nicest way I could, but I finally did it!
I felt myself slipping back to the old days with Gab and the "well they are the doctors" mentality.
When the nurses came through this morning and started talking about how his GI was recommending that I take him to Gab's docs for followup that's when I got mad.  Of course that was my thought process, but they did not know this!
Then when the regular doc came in and started saying the same thing I was really not happy.  I simply said something like, excuse me but why on earth would she recommend that without talking to me, and also, she's only talked to me about the possibility of H-pylori infection ~ who in the hell goes to the Mayo clinic for antibiotics to treat an infection? He just kind of looked at me ..
Anyhow, I proceeded to say can we just please stop ignoring the elephant in the room and talk about the fact that we all think he has Crohns ? I mean, come on, I'm not scared of it, nor am I ignorant or uneducated about this particular disease...I am quite well versed, trust me on that one.
He was extremely respectful and responded with Yes, that is what we believe he has.
He then agreed to run more blood tests because he was concerned about the fever last night, and I also asked him to check his CRP and ESR and he is.
I then informed him that the nurses refused Austin pain meds this morning because they thought he was going to be discharged.  He wasn't happy about that at all.

So....then the GI doc comes around and I happen to walk into the hall when the GP doc was filling her in on what I said. 
She's no longer beating around the bush with me.  She did however inform me that in NO WAY did she discuss with anyone transferring him to Mayo, and she's not happy that they all told me that.
Anyhow, she came right out and said YES, this is probably Crohns, and indeed it does present that way from what she saw.  She just wanted to wait for the biopsy results before she jumped the gun.  However, now that Austins pain has returned with a vengeance and he is refusing food or drink, she says, If it looks like Crohns, than we need to treat it that way, especially in light of his sister.

They are not releasing him this weekend, and the GI is ordering more tests as well.  Not sure what those will be tho.
She is also the one who discussed starting the Entocort right away.  She also called the pathology department personally and asked them to do a preliminary look at his biopsy slides before its the weekend.

So here we go...denial is no longer...my second child (officially) has this horrid disease as well.
If you look back to page one of the Undiagnosed Kids thread you will see I knew this 2 years ago...ugh, ugh , ugh.

edit : Oh , I forgot, she's also going to see if she can get approval to run the Prometheus blood test while he's admitted as well.


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## my little penguin

Hugs
Personally I would push for pred ASAP
Entocort will not survive the stomach if opened and treat the TI
As far as I know
Our 2nd opinion Gi vetoed Entocort for DS due to stomach and duo involvement
Hugs


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## Crohn's Mom

Thanks MLP, but I nixed the Pred for now.
The idea is to try and treat the stomach as quickly and effectively as possible so that we can get him to maybe drink/eat with a little less pain, while we wait on the rest of the test results and figure out a long term treatment plan after we know the extent of his disease.

I got him an Ensure earlier and he drank it, but it made him nauseas :ybatty:


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## my little penguin

Peptamen is easier when the duo is inflamed


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## Crohn's Mom

Oh ok ! Ill check into it


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## DustyKat

Oh T, I don't know what to say.  Two years ago I wished with all my might that you would not find yourself in the position I did (((sigh))). I feel your pain mate...I linked someone to Matt's thread yesterday and was reading over it again myself and thinking of all the emotions I went through and I know that is where you are now. :ghug: 

It goes without saying that I will continue to hope, wish and pray that this isn't Crohn's until there is confirmation but just know that I am here hun and always will be. :heart: 

How is Austin, psychologically? 

Loads of love, :wub:
Dusty. xxx


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## upsetmom

:ghug:.:ghug:.:ghug:..My thoughts are with you.


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## crohnsinct

Sorry you are having to deal with this but you hit the nail on the head...you are an expert with this disease!  He is lucky to have you and Gabs in his corner.


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## Crohn's Mom

Alright peeps - help a momma out here ...

Austin is HIGHLY allergic to NSAIDS -
How's this gonna go over when trying to control his inflammation if he can't take anti-inflammatory meds ?

He can't stay on Entocort for life...

Do the TNF blockers have any NSAID properties ? Or do you know ? 

Trying to think ahead of the game here ...


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## DustyKat

NSAID's are Non Steroidal Anti Inflammatory Drugs T and are contraindicated with IBD. So the anti inflammatory drugs that are used do not have NSAID properties. 

The immunosuppressives and Biologics have a different mode of action to steroids and NSAID's T. They are about controlling the immune system, not treating acute inflammation. 

Dusty. :heart:


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## Crohn's Mom

Thank you! 
Of course I know NSAIDs aren't for IBD but here's the thing - like aspirin is an anti inflammatory as well and he can't take that. So - in essence none of the IBD meds that are considered anti inflammatories go into his allergic category? 
Sorry if I sound "dumb" but his is an immediate anaphalatic reaction


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## my little penguin

NSAIDS cannot be used at all in anyone with iBD.
Entocort is short term similar to pred just less side effects.

He would still need a maintenance med.
Upper crohns is treated the same as lower  crohn's
you get the inflammation under control by the same meds
( 5 ASAs ( ok try not to laugh), immunosuppressants and biologics)

IF he has inflammation in systems ( joints etc... ) then TNF helps


not sure of the question

DS had inflammation due to crohns in his stomach, duodenum , Ti, caecum, sigmoid colon and rectum.
The only extra stuff he was given was prevacid in addition to 6-mp with (ENN/pred) at first .

now humira with asacol /canasa and zantac to reduce the inflammation.


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## my little penguin

OK that make more sense.
ASA's would probably be out then since they are contraindicated for aspirin allergies.
but there shouldn't be any issue with anything else ( ask your allergist though   )

remicade is more likely to result in ANA due to the mouse side of it.
humira is less likely.


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## Crohn's Mom

Gotcha MLP ! (And yes - I laughed LOL) 

I think I know my meds - but I'm sure you all can understand me wanting to be vigilant in making sure he's safe and doesn't get any "life threatening" meds prescribed. And also- I wasn't sure of the nature of them honestly and sitting here thinking " great - he can't take the "easier" meds " or something ...
I'm a bit emotional these days lol.


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## Crohn's Mom

Example : he took a brand of Sudafed for his allergies a few weeks ago and ended
Up in the ER for emergency treatment - come to find out it has anti inflammatories in it :/


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## DustyKat

Ah okay, yes 5ASA's would be out but in all honesty T, if Austin has Crohn's I would think he is past the 5ASA's anyway and a GI would move straight from steroids to the immunosuppressives or biologics. 

I have to agree with David on this one, Mesalamine has limited use in Crohn's, if at all but that is only my opinion. 

Dusty. xxx


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## my little penguin

Understand completely- DS has an epipen as well-
it made remicade very interesting to say  the least.
one step at a time.
WE just went though all the meds recommended by the GI
and covered them with the allergist prior to starting.
have them draw a rast test for mouse protein now- that way you can rule out remicade 
without trying it if you need to given his allergic history.


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## my little penguin

> Technically aspirin and sudafed/pseudoephedrine are not related. The problem is that there are many medications that carry the Sudafed branded name- some of which might contain NSAIDs. So reading labels is imperative.


https://www.healthtap.com/#user_que...c-to-aspirin-can-i-take-sudafed-with-no-worry

So its not the anti-inflammatory properties
but the extra ingredients in this case or if they were cross contaminated on the line with other sudafed which contained the nsaids.

I have spent 6 years in allergy land.


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## DustyKat

my little penguin said:


> I have spent 6 years in allergy land.


If all these deadbeat actors etc can get honorary doctorates then I think you are well and truly overdue for one mlp! and yours need not be honorary! Six years equates to a medical degree so I will now call you Prof cause you have more sensibility and knowledge than most docs I know! 

Prof mlp, now I like the sound of that. :worthy: 

Forever grateful that you are here Prof.  

Dusty. xxx


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## Crohn's Mom

That's pretty much exactly how the GP doc explained the "sudafed" reaction to us today MLP - so I'm on board with your prof title now too!


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## my little penguin

I only know what I have had to know due to the many issues Ds has- allergy of the life threatening kind is one of them.  That learning curve was much steeper than crohn's.
BUt I am more than happy to share-

Of course when the doc ask anything new - that ds has not had yet -well I am like a deer in the headlights like everyone else.


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## DustyKat

I hear and understand exactly what you are saying Prof mlp  but that still doesn't account for your exceptional abilities. :ybiggrin: 

Dusty. xxx


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## Dexky

Son of a bitch!!  There are some smart people on here….

Sorry T!!  But glad Austin's in the best of hands…yours and ^^^^theirs!


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## crohnsinct

DustyKat said:


> Mesalamine has limited use in Crohn's, if at all but that is only my opinion.
> 
> Dusty. xxx


The only thing better than Dusty's gut is Dusty's opinion! 

Hahaha I like Prof. MLP!


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## CrohnsKidMom

I'm sorry to hear of your son's " working diagnosis", but glad treatment is underway.  I have to say, you are ALL such a blessing to me.  I'm still a newbie and I am learning so much from you all.  Hope your son is feeling better soon!


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## dannysmom

oh gee T!!
What a shame it had to come to this when you have suspected this for a long time now! (I think I'll read Austin's intro in the Undiagnosed Kids thread.) I hope he continues to improve and gets on a good treatment plan.

(I just read it ... it was hard to read what you went thru 2 years ago T! )

HUGS!!!


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## Johnnysmom

I am just catching up... so sorry to hear about Austin.  I second Dexky, he is in great hands!!  And you all never cease to impress me with your compassion and knowledge.

((((Hugs)))))) praying Austin is feeling better soon.:ghug:


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## Dexky

Crohn's Mom said:


> No Dex, Austin started having test done bout 2 years ago. He got so fed up and angry tho that he refused any more doctors :/
> Tough guy syndrome


I'm such a shit friend T!!  I followed that whole episode and didn't remember it being Austin at all.


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## Crohn's Mom

Dex  ~ no one could possibly keep up with all my stories from all three of my kiddos ! Hell, I cant !
I actually come here sometimes and start trying to get a timeline for myself before I go to a doctors appointment to make sure I'm referring to the right one ! LOL

Much love !


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## ChampsMom

Oh T... I'm so sorry to hear your son (and you) are going through this...   I hope the meds and change of food helps soon!  

(((((HUGS))))))


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## littlemissh

One thing that worked really well for me when my gastroduodenal ulcers were most painful preventing eating and sleeping was sucralfate. It is much better than gaviscon and other antacid liquids and coats the lining of the oesophagitis , stomach etc. it is used in palliative care for radiation ulcers of the same area. It is amazingly soothing and lasted a couple  hours each glug!
There have been some supply problems as the liquid was made in a factory hit by the tsunami but you can crush the tablets into a water to make a thick gloop and it works well.

For me imuran helped but humira worked best for the upper GI ulcers...and they give me very little trouble unless I have to stop humira temporarily .
EEN also has worked well to speed healing in the past (with nasojejunal tube to bypass the stomach and duodenum), helped with weight also.
Before you know it, you will have a plan, it will be working well and he will be feeling great!


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## Sascot

Hi, been away for a wedding so missed all this.  Sorry to hear about your son's nearly diagnosis.  Hope the Entocort starts working asap and he starts to feel better.  Good luck with all the tests!


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## Crohn's Mom

Update: 
Austin has been screaming in pain and vomiting bile tinged with blood
They are putting in an NG tube and doing another ct and X-rays and calling in a surgical consult and possibly transferring him to the ICU
They think he may have a perforation 
 
My poor baby - I couldn't stop crying watching that  
They've doubled his pain meds right now while we wait so he is at least tolerating the pain now.


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## my little penguin

So sorry T
Hugs


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## Clash

I'm so sorry T! HUGS, prayers and thoughts your way!


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## Crohn's Mom

ESR (sed rate) is 34
CRP is 4 
GP just came in and re-explained what they're doing and also said they've called in an adult GI consult now. 
He also said yes, we're just about positive it's Crohn's. 
yes , I know


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## Farmwife

I'm so sorry you have to face this again.

Is he feeling better?
How's the family taking it?


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## poppets mum

:ghug: hoping things get better soon for all of you.


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## Tesscorm

I'm so sorry I hvnt been here...  I'm away and hv limited acces. But my heart is truly breaking over what you, Austin and your family are dealing with now and you have been in my thoughts constantly!!  I can only imagine the pain you're feeling now but try to stay strong!!  He's being treated now and he will soon be on the road to improvement!!

FYI, S also had inflammation in his duodenum when diagnosed and EEN did perhaps help bypass that area while providing his nutrition needs. 

Lots of love, hugs, prayers!!!!!


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## littlemissh

I really hope there is no perforation, but if there is it is dealt with quickly.
Hugs.


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## Sascot

So sorry to hear he is suffering so much.  Hope they help him soon!


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## Crohn's Mom

CT scan did not show any perforation. 
He is getting ready to start the prep for a colonoscopy at 10:30 am tomorrow. 
(Yes MLP - I know ...  ) 

He's much more comfortable now thank goodness - but it leads me to believe that he has a narrowing somewhere that caused that horrific pain this morning. 
I'm just happy he's not screaming in agony any more


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## littlemissh

Phew, thats good news. I presume they are going to be doing some more small bowel imaging in addition to the colonoscopy. Did the CT shed any more light on the state of his small bowel?


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## Crohn's Mom

They're probably going to do an upper GI w follow through at some point as well. 
And no , the ct scan basically looked the same as it did 3 days ago. It doesn't even show any inflammation in his TI even tho the GI saw it visually with endoscopy. 
I don't have a lot faith in CT's anymore.


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## littlemissh

I agree. My CT's have never shown anything much...same as my CRP, always fine even when Crohn's misbehaving-which I notice is the same with Austin as his CRP is ok (assuming same units as UK).

Hope you both get some rest.


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## my little penguin

FWIW upper gi with small bowel follow through - tends to not show a whole lot ( very old school- if it didnt show up on the ct) then most likely will not show up on the upper gi series w/sbft.
Glad his pain is down some.
who is doing the scope the same GI? 
Sorry you have to go through this all again.:ghug:

I can say DS's pain in the beginning was bad - due to all the inflammation.
hope they get the look they need and move him quickly on to the pred he needs with a plan for maintenance.


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## my little penguin

littlemissh
his crp is high for US units
1 would be normal



> High-sensitivity C-reactive protein (hs-CRP) levels
> Less than 1.0 mg/L
> 
> Lowest risk
> 
> 1.0 to 3.0 mg/L
> 
> Average risk
> 
> More than 3.0 mg/L
> 
> Highest risk


from
http://www.webmd.com/a-to-z-guides/c-reactive-protein-crp?page=2


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## littlemissh

It might be worth asking for a small bowel enterography (MR rather than CT to reduce radiation exposure). Its better than small bowel follow through (fluoroscopy). He could have the contrast through his NG.

http://www.hopkinsmedicine.org/heal...ures/gastroenterology/mr_enterography_135,61/

MLP- thanks for that. In the uk <10 is normal.


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## Crohn's Mom

Guess the docs going to redo the upper endoscopy as well in the morning so she can take a look at the "giant" ulcers in his stomach again and see if they've changed already. 

I'm taking over giving Austin the GoLytely prep through his NG tube because they want to do it "on schedule" and it's too much too fast for his body and they won't listen to him. So momma said - show me and ill make sure it's done by the scheduled time- I told her I'm a pretty damn good GI nurse by proxy! LOL


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## my little penguin

Glad you are in charge.
Good luck in the morning .


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## DustyKat

Oh T! How awful for you both! :hug::hug::hug: 

Since he has an NG tube I think an MRE in conjunction with the scopes would an idea. That is assuming his gut can tolerate the volume of fluid required. 

Sarah's pain was always predominately upper epigastric with vomiting. If the pain occurs again, hoping it doesn't!, have them do pancreatic enzymes as well. 

Good luck to you T and your boy! You are well and truly in my thoughts. :Karl: 

Always,
Dusty. xxx


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## Crohn's Mom

Thanks Dusty ! 
The first thing we thought was pancreatitis because of his recent motorcycle accident. Those bloods were normal. Then again this morning we thought it again, but again normal. 

And this hospital doesn't have an MRE machine available- I've already asked when they wanted to do the second CT  

His pains increasing with the prep this evening - they gave him is pain meds about 20 mins early, which was nice. Also, I requested some Maalox to coat his stomach since the Reglan or Zofran don't seem to be taking all of the nausea away. The Maalox seems to be helping  

On a side note ... I REALLY wanted to be wrong ... Just saying ,


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## Jmrogers4

So sorry T, hope things go well tomorrow and he gets a comfortable rest tonight.  Thinking of you and sending lots of hugs


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## DustyKat

Ugh T, I hear you about the CT.  We didn't have it available for Matt a lot of the time either but what do you? It's all down to bloody risk v's benefit again! Boooooooo. 

God damn I am glad you are there T. If Austin doesn't realise right now, maybe he does?, it won't be long down the track that he will know just what a godsend and brilliant mum you are. :heart: 



> On a side note ... I REALLY wanted to be wrong ... Just saying


Goes without saying hun. :ghug: 

Dusty. xxx


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## my little penguin

Hugs we know you do 
.


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## Twiggy930

So very sorry to hear all you have been going through.  Really hoping that they can get things under control quickly so that Austin can get feeling better soon.

:hang:


----------



## Dexky

I hope his prep is going well, T!  Did he or you get any rest last night?


----------



## Crohn's Mom

Thanks Dex ! 
Nope, I don't believe either of us got more than about two hours. 
Doc called and they're on their way to pick him up and do the scopes early at least  
He's in pretty good spirits considering


----------



## Dexky

Did the cleanout go ok?  Nausea settle?


----------



## Crohn's Mom

I got it into him and it went pretty well -
And what do you know, I didnt have to force it down in obnoxious amounts just because he had an NG tube (yes, I'm in a mood this morning! lol)


----------



## littlemissh

Good luck to Austin. Hope you get all the info you need and a bit more rest tonight.


----------



## Dexky

Yeah, but did it come out pretty well??


----------



## Crohn's Mom

It took quite a long time,
But eventually it started working, so hopefully he's cleaned out. He was starting to remind me of Gab back in the day for a while because he was well over half way into the prep and nothing had happened.


----------



## Dexky

I hope they get a good picture of what's going on in there and then a plan!!


----------



## Crohn's Mom

This is a REALLY hard day for us being locked up in the hospital -
Today is the day my family is spreading my brothers and Austins favorite unlces, ashes in the ocean and his memorial, and neither of us can be there


----------



## Dexky

Oh T!  Sorry!  Can't they postpone till next weekend??  Or are some family members having to travel?

I saw your fb entries and while you never came out and said what happened, I pieced it together.  Sometimes we just never know the pain some go through


----------



## Crohn's Mom

I wish Dex, but there's at least a 100 people coming, and we've already had to post pone it this long. 
Thank you and yes - you just never know


----------



## my little penguin

Hugs T
Can they FaceTime it or something for you so you could virtually be three in a way?


----------



## Niks

That's a shame .  Good idea though MLP.  (((hugs)))  :ghug: xx


----------



## DustyKat

Thinking about you and Austin so much T. :ghug: 

Trying to do the time difference calculation...any news? No pressure mind. :Karl: 

Dusty. xxx


----------



## Crohn's Mom

Austin pulled through the colonoscopy just fine.
Doc said she didn't see too much else new except a couple small red places in the colon, but she said those could also have been from the prep, but she did do biopsies. 
She's thinking it's Gastoduodenal Crohn's, but of course we need biopsies to confirm that as well. She did say that sometimes biopsies aren't that useful with this type with confirmation on the duodenal ulcers. 
So she started him on iv solumedral and also put him back on the carafate.

I forgot to say the other day that they took him off of the Entocort after the first dose because they have a theory that it may have made him worse that day. He was given a dose of B6 to help counteract it. 

His pain seems to be lessening some which is good to see  
Not sure on what the plan is today. Hopefully we may get some answers from the first biopsies if we're lucky.


----------



## littlemissh

My biopsies from the stomach and duodenum have always been non diagnostic but as I was H pylori negative and very high dose ppi didn't resolve the ulcers yet Crohn's meds did, they considered that diagnostic.
My gastro won't give me oral Pred as he also worries it may make it worse.

I hope his new meds work well. It's good that there was no worsening.


----------



## Tesscorm

Just sending more hugs! :hug:  I hope you've gotten more info from the doctor today and that Austin's pain has continued to lessen!  :ghug:


----------



## ChampsMom

Sorry to hear that it is Crohn's, but glad you have some answers..  I pray you get all the meds set fast and he's feeling better soon!  

Way to stand up and say something!  :highfive:  I loathe when doctor's (actually anyone) talks to me like I'm stupid.


----------



## Crohn's Mom

Just found out Austins CO2 is high, and also his liver enzymes now. 
They're thinking it may be due to the pain meds, so they've switched him to oral Percocet as needed and want him to get up and walk. 
They're running more bloods in the am to recheck.


----------



## kimmidwife

Oh my goodness, I totally missed this thread, I am so sorry, I have not been following things as much due to some health issues of my own going on. I am sorry that the testing is pointing In The direction it is. Sending lots of hugs and prayers. Will try to keep up better.


----------



## Dexky

Are y'all still in the hospital T?


----------



## Crohn's Mom

Oh yes


----------



## Dexky

Any plans for dismissal?


----------



## Crohn's Mom

They are talking about hopefully tomorrow, but now it depends on his liver enzymes.


----------



## Dexky

I hope that's nothing T!


----------



## upsetmom

:ghug:.. Just wondering how Austin is coping with everything that's going on ?


----------



## Johnnysmom

Hope you are able to head home tomorrow, and I am glad Austin seems to be feeling a bit better!

(((((Hugs))))))


----------



## Jmrogers4

Just checking in and sending hugs your way, hope Austin is feeling better and gets to go home soon


----------



## Kimberly27

I'm sending my best your way.

Kimberly


----------



## CarolinAlaska

Oh, T, I'm so sorry I am late into the game here.  What a crazy week you've had!  I'm so sorry that you are going through this with your son, and that your motherly instincts were right about his crohn's.  Ugh!  It sounds awful to have ulcers throughout his upper GI.  I'm glad that they didn't keep giving him the oral budesonide and caught on to that as a probable cause to his worsening symptoms!  I will hope that you and the docs can figure out a perfect plan of action, with everyone's help from here of course!

Let us know what the biopsies show.  Any chance he can get a pill cam?


----------



## DustyKat

Thinking about you T, soooooooo much and wishing you and your boy nothing but the very best of everything! :ghug::heart::ghug::heart::ghug: 

Dusty. xxx


----------



## Crohn's Mom

upsetmom said:


> :ghug:.. Just wondering how Austin is coping with everything that's going on ?


I'm honestly not quite sure ?
He has a lot of (self imposed) stress in his life lately, so pile this on top of it and well....
The reason why I stopped updating on him, and taking him to doctors 2 years ago, is because he got VERY angry over it all and didnt want to believe that he could possibly have what Gab has. 
And now even tho his GI doc and I keep explaining that Gabs case is so not typical, you really can't blame him for being discouraged due to him watching her suffer without remission all these years. 
Hopefully tho, Gab can help guide him and direct him into a more positive thinking role  

Gab is very very upset over this and said to me that this is so unfair, and "I was supposed to take all the pain and suffering mom so they didnt have to, why wasn't that enough?" 
Heartbreaking ....


----------



## Dexky

Has he felt like moving around much?  I hope you guys can get outta there today T.  Good luck with the bloods!


----------



## Dexky

I hope Gabs was just saying that because of the emotions of the moment.  She's not meant to take on any suffering, for anyone!  

Man T, I hope Austin realizes that this is a life changer but not a life ender for him.  Rebellion and Crohn's are not a good mix!


----------



## Crohn's Mom

Dex - I told her to try and think of the positives , now Austin has something that she never has - someone who can completely understand and relate ! 
And they can help each other through this  

She's at home and has to prep for her scopes tomorrow so hopefully he will either get released today so I can be around, or I will try and leave here for a while and make sure she's doing ok. 
(And it would be nice to spend a little time with the rest of the family  )


----------



## Dexky

Crohn's Mom said:


> (And it would be nice to spend a little time with the rest of the family  )


…and away from a hospital!!  Oh, you poor mom!!  How about you T??  How's your ongoing symptoms?


----------



## Crohn's Mom

Oh on a (positive) note...
GI doc had ordered TPN for him yesterday but when Austin woke up he was actually hungry and asking for food so we didnt have to start it! 
the steroids must be doing it is all I can figure - but ill take it!


----------



## Crohn's Mom

Dexky said:


> …and away from a hospital!!  Oh, you poor mom!!  How about you T??  How's your ongoing symptoms?


Ummmm .... Austin's doc threatened me with an NG tube the other day ... LOL 
Ill leave it at that


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## DustyKat

It sucks when have two kids with Crohn's but one of the few positives is that they have each other.  I hope that's what it turns into for Gabs and Austin T. :ghug: 

Sarah and Matt were always your typical siblings...one hour/day as thick as thieves and the next, hating each others guts. :lol: After Sarah was diagnosed things didn't change much but as time passed I knew deep down that Sarah struggled with the burden of her disease and although she never said as much to Matt I know she was both saddened and resentful, not in a bad way IYKWIM, that she was stuck with the disease and no one else, including Matt. 
Then when he was diagnosed she was saddened again but this time it was because he did have Crohn's. Their relationship has developed in ways I would not have thought possible and they really are best mates now.  It really is a friendship borne out of shared suffering and experiences. 

Dusty. xxx


----------



## Dexky

DustyKat said:


> It really is a friendship borne out of shared suffering and experiences.
> 
> Dusty. xxx


Were this a little more light-hearted, I could really have fun with that!!  But I won't!


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## Crohn's Mom

Go for it Dex! LOL


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## DustyKat

Yeah Dex, go on!


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## Dexky

I hope the implication was enough!  I'm sure we can all imagine the pain and suffering of being one of her children, or husband, or GI, or….


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## DustyKat

Ha! So offended...NOT! :ylol:


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## crohnsinct

So glad Dex chimed in with his humor because I was crying up until that point.  

Gabs :ghug::ghug::ghug: What a dear heart.  No wonder given who has raised her.  

Hope Austin was able to enjoy his food this a.m. and that things continue to pick up.  

We will keep praying for you all!


----------



## littlemissh

Rather than TPN, would they consider a nasojejunal tube feed. Less risky and worked well for me as I couldn't tolerate NG feeding due to all the ulcers etc.
Hopefully he can avoid either. Though my NJ tube is put in at endoscopy as it can't be placed just by placing it like an NG tube.
Let's hope he stays hungry )


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## zilla7777

Wow, I can't believe I missed this thread! I hope he's doing as well as he can, and that things start to turn around for the better!

He is so lucky to have such an understanding parent, it means so much to have that sort of support. 

I was in disbelief when you quoted the doctor saying Crohn's wasn't found in the Duodenum. I feel like flying over there personally, shoving an endoscope down my throat and (although it'd be kinda difficult whilst essentially eating an endoscope) "EXPLAIN THIS THEN!"


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## kimmidwife

Checking in to see how he is doing today and if you have heard when he may be released?


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## Crohn's Mom

We have escaped ! 
I got copies of all his tests so will of course be going over them myself

Sent home with prednisone, carafate, Prilosec and Percocet. Follow up with doctor this week they said. 
His bloods today shows liver enzymes going down and CO2 back to normal; but he's still considered "malnourished" 
Going to buy him some, well something that maybe he'll feel like eating/drinking.


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## Tesscorm

OMG, I just wish there was some way to send you some real hugs and strength, to you and your entire family! :ghug: :ghug:

I'm glad you'll soon (now) be home!  Hopefully, at home, Austin will be able to come to terms with this without being poked, prodded and tested every moment!  AND with the support of his family, friends around him! :ghug:

As for Gabby, she really is all heart!  After all she has been through to show so much compassion for her brother! 

And, YOU, you are just amazing!  Even through all this, I can still feel that you are the rock for everyone!  But, take some time for yourself too; you need to be taken care of a bit too!!!! :hug:


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## DustyKat

:dusty::dusty::dusty::dusty::dusty::dusty:

Ah T, I hope all goes well with Austin and Gabs. :ghug: 

Sending you tons and tons of love, luck, well wishes, healing thoughts and Aussie mateship! :heart: 

Dusty. xxx


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## my little penguin

:ghug: Hope things go smoothly until your GI visit-
IS Austin seeing Gab's GI this week or the "other one"?
Good luck on the scope.


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## CarolinAlaska

Glad that he gets to go home.  I hope you can find something that he likes...how about some Carnation Instant Breakfast drink for now?


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## my little penguin

slim fast, kellogg's breakfast shakes, ensure( clear/sidekicks, pediasure sidekicks or regular)


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## Sascot

Glad you've got out of hospital.  Good luck with the treatment.  Hope he keeps feeling hungry so you can feed him up!


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## Niks

Bet he's so glad to be home!!  Good luck with Gab's scope..  (((hugs)))  xxx


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## kimmidwife

Good Luck with Gabs scope! I am glad Austin is home. You guys have been through such a rough time. As everyone said thank goodness they have such a wonderful Mom!


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## DustyKat

How are things going with Austin and Gabs, T? 

I hope they are both okay and you too hun. :ghug: 

Thinking of you, :heart:

Dusty. xxx


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## Crohn's Mom

Well, going home didn't go so well :ybatty:

First off, I'm going to say this.. Dex, when you said Crohn's and rebellion are not a good mix ~ well, that's an understatement ! LOL
Austin came back with me when he was released yesterday, and I was relieved. He has had his own apartment for the last 3 months, and lives about 30 minutes away. He rested quite a while, I made him a tasty omelette, and made sure he was keeping hydrated and taking his meds.
I guess he thinks he's superman, and invincible, because he decided he was going out with his friends last night and he was "fine!"
Long story short, I wasn't happy, he didn't care and went home to his apartment only to wake up today in a lot of pain again. Problem is, I had to be out of town with Gab for her colonoscopy until late this afternoon, so I couldn't help him.  
He ended up taking himself to the ER near his apartment.  They did another CT scan and bloods, and gave him IV fluids, protonix and IV pain meds.
The ER doc called me to let me know he was there and see if I could explain whats been going on.  I went to the ER, after I dropped Gab back at home, and they were discharging him.
He is still in a ton of pain this evening, and was vomiting up until about 2 hours ago; at least now he is finally in his bed ( here at my home) and seeming to rest.  He wakes up every so often moaning but then falls back to sleep.  I am trying to give him small sips of water whenever possible.
HIs appointment for followup is at 8 a.m. tomorrow, so hopefully we will have a better plan for him ~ or he may end up being admitted again...

My heart is breaking for him, but at the same time I want to slap the stupid out of him! Know what I mean? 
Damn teenagers know everything ! :yrolleyes:

Gab's home safe from her scope today.  She is feeling awful unfortunately too.
We didn't get to talk to the doc after, but I am sure they will call with blood test results and talk about scope soon.  If not, we have an appointment with him on the 11th to go over it all.
Her bloods show (Ive seen them online already) that her CRP is elevated tho (9), and her b12 levels are high, and her BUN is low.  Her Ferritin level is better, but still low.
Weird....:ybatty::ybatty:

It's been one hell of a day !


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## DustyKat

God dammit T, bloody teenagers! :voodoo: 

I hope Austin is okay mate and good luck with his appointment. Fingers, toes and everything else crossed that you have answers and a good solid plan of action! :goodluck: 

And Gabs, bless her. :ghug: Hoping more than anything that this amazing young lady gets a long and lasting break ASAP! :goodluck: 

In my thoughts, always. :heart:

Dusty. xxx


----------



## Catherine

Ferritin can also act as a marker of imflammation, so it may not have gone up.


----------



## Crohn's Mom

Good point Catherine !


----------



## Catherine

Do you ever get a iron panel or iron studies, instead of just ferritin.  
They give a better picture of iron levels. 

In Australia we call it a iron studies, and you get four different numbers.


----------



## Crohn's Mom

Oh yes - they test them all. 
Her anemia has just always showed with ferritin best for whatever reason. 
All of hers right now are on the low end. 
Even the doc just looked at her last week and commented on how pale she is.


----------



## Dexky

Well, it must have been very bad for him to take himself to ER!  Maybe, just maybe, he learned a valuable lesson.  We can dream, right?  Any chance Gabs can get through to him?


----------



## Crohn's Mom

Doctor sent us back to the hospital 

They weighed him on check in and he's down to 145 pounds - good grief


----------



## crohnsinct

So sorry

But can I just say you get Forum member award of the day!  His appointment was at 8 a.m., they are sending you to hospital and you still managed to post us by 9:02!  You knew how worried we are and how impatiently we wait and watch for the updates. Thanks for keeping us posted although I wish you didn't have to!


----------



## Crohn's Mom

LOL thanks CIC ! <3 

I don't think he'll be admitted long really. They're starting him on iv fluids and protonix right now and he's resting. 
I think they're main focus is to get him hydrated and hopefully the protonix will help settle his stomach some as well. 

Biopsies came back and I believe she said they were all negative, but I'm not positive cause we were in a hurry to get him to the hospital. 

I can't help but wonder if maybe his "lifestyle choices" these last few months are the cause of a lot of this ... 
I believe he'a truly sick and in pain of course ... Just thinking out loud really.


----------



## crohnsinct

Oh I hear ya sista!  Like if we change this or that he will be all better and this will all go away.  Who among us hasn't been there.  

Hope he is feeling better and that you are right and they kick you guys out in no time!


----------



## CarolinAlaska

I think life experiences are the best teacher.  Hopefully this one will help him see that Mom knows best!  I hope both of the kids are feeling better soon.


----------



## Crohn's Mom

They did a HIDA scan to look at his small bowel and they're also thinking it's his gall bladder as well. 
That could definitely explain the enlarged liver, and elevated enzymes right? And explain the massive pain, because ulcers shouldn't be causing his kind of pain. 

Guess we'll know soon right !


----------



## Tesscorm

Poor Austin (and you!!).  Unfortunately, teenage indulgences can affect their health, especially if there's an underlying condition but still sucks that our kids pay such a heavier price for their choices.   (Terrified about Stephen's choices in Dominican this coming week! :yfaint:  If you don't see me around here, I'll be hiding in the bushes in Dominican with my binoculars! :shifty-t

I hope Austin's beginning to feel better.  Don't know about your question re his gallbladder but hope, whatever it is, they're alleviating his pain right now!

Hope Gaby's feeling better too today! :ghug: :ghug:


----------



## kimmidwife

Finally had a chance to get on the computer! Have been wanting to check in all day. I am sorry to hear things went south again. Hopefully he will be home soon. As to the gallbladder, I looked it up and found a very interesting article. From my reading and prior knowledge I thought that gall bladder could cause the raised enzymes but as far as I could find does not cause enlargement of the liver. ( however this is out of my medical field. So just my opinion not medical advice)
Anyway here is the link to the article:
http://www.liverdoctor.com/liver-problems/gallbladder/
It was interesting in that it talks about to many doctors rush to remove the gallbladder when it may not always be necessary.
Also how does the doctor explain the ulcers then? From what I am remembering you said they saw many ulcers. I think that certainly could cause a lot of pain. I am really curious about the biopsy as well especially if it was negative. We have heard of negative biopsies in the past from people whose kids were eventually diagnosed with crohns. I wonder is it the doctors reading the biopsies wrong? Or are they biopsying the wrong place? I a,ways wonder about that.


----------



## kimmidwife

Crohn's Mom said:


> Austin pulled through the colonoscopy just fine.
> Doc said she didn't see too much else new except a couple small red places in the colon, but she said those could also have been from the prep, but she did do biopsies.
> She's thinking it's Gastoduodenal Crohn's, but of course we need biopsies to confirm that as well. She did say that sometimes biopsies aren't that useful with this type with confirmation on the duodenal ulcers.
> So she started him on iv solumedral and also put him back on the carafate.]
> 
> Ok so I looked back and saw you said the doctor said biopsies don't always prove positive in this type of Crohn's disease. Hmmm, now you have me wondering what is really going on with him. I really hope though he is more careful and takes better care of himself but like you said teenagers!


----------



## Jmrogers4

Goodness T, I was out of town for a couple of days we surprised our younger son with a trip to an amusement park in Salt Lake while his brother is at camp and just got home today and was checking to see how Austin was doing and hoping he was back home feeling relatively well, teenage boys indeed!  Hope you get answers to both kiddos soon.  Sending loads of hugs and support your way


----------



## DustyKat

Hey T...:ghug: 

I hope you can get to bottom of things soon. What is your Crohn's Mum intuition telling you? 

Sending loads of love your way! :wub: 

Dusty. xxx


----------



## Crohn's Mom

Well, well well ....
GP just came in and talked to us..
HIDA scan definitely shows his gallbladder is not functioning so they are putting in for a surgical consult. 
ALSO, he said it definitely looks like he also had Crohn's as well. 
They are still waiting on the biopsy results tho. I don't know what the hell the other GI was talking about when she said they were negative, because they're not even back yet :/ 
Anyhow, there are lots of tests that are pending as well right now he said. 
The GI doc will be in later to talk as well. 

I am SO glad when they admitted him this time that it was as an adult ! What a difference ! 

Poor kid and a double whammy!


----------



## Tesscorm

I'm glad they've kept him too!  It certainly sounds like they are doing all they can in searching for the cause(s) of his pain, etc.  

I hope you've had a few minutes to get some rest too!

I wasn't sure how Crohns and the gallbladder were connected so did some quick research , found some info that might be of interest to you.


http://www.ncbi.nlm.nih.gov/pubmed/16521232
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC498772/?page=1

I hope the GI is able to give you more answers! :ghug:


----------



## Crohn's Mom

Oh - and he said they see Crohns in his colon as well


----------



## CarolinAlaska

Sheesh.  Low fat diet is in order for that gall bladder...  Could it be that it isn't working right due to inflammation?  Find out GI's take on it before they go cutting on him...  I don't think livers are typically enlarged with gall bladder disease.  How high were his liver enzymes?  Which ones were high?


----------



## Crohn's Mom

Yes my theory is the inflammation as well. 
His results from the other day are at my house, but off the top of my head his last one I have was 157 for liver?


----------



## Crohn's Mom

He's on all liquids and not even touching those - he hasn't eaten since Tuesday this time.


----------



## CarolinAlaska

Alk phos tends to be high for gall bladder.  AST or ALT for liver, but can be elevated for gall bladder too if it is high enough...


----------



## Crohn's Mom

Surgeon came in - they're not in a big rush to take him into surgery. 
He said its just strange where his pain is located (lower abdomen) , even tho the HIDA scan was positive. 
He was a resident, so he said he's gonna talk it over with the attending and they'll be back later this afternoon. 

On a side (ironic) note - 
Gab is here at the same hospital shadowing a general surgeon today and has been able to watch three gallbladder surgeries today! LOL


----------



## Kimberly27

I'm sorry your family is going through tough times right now.  Hugs.

Let's check-in on you for a moment.  I remember you saying that the doc. was teasing and threatening a feeding tube. :eek2: Are you eating yet?  Are you getting any breaks for walks?  We're worried about you too!

Kimberly


----------



## DustyKat

Oh T...:hug::hug::hug:...I feel your pain, heartache and numbness hun and just want you to know that I am here, always. 



> He said its just strange where his pain is located (lower abdomen) , even tho the HIDA scan was positive.


Tell him it's called extra intestinal manifestations of Crohn's and it screws with all our heads. :wink: Sarah was the opposite. All of her pain high up and all of her problems low down. 

Too many members here have had their gallbladder out based on the findings of tests only to find it made no difference to their symptoms and then later diagnosed with IBD. I'm not saying that is the case with Austin but...hell I'm preaching to the converted here! 

Happy shadowing day to Gab!  Do you think she has learn't enough to tell Austin she can do his if need be? :lol: 

Thinking of you mate, :heart: 

Dusty. xxx


----------



## kimmidwife

Just checking in on you guys quickly before we have Friday night technology shut down for family time. I hope Austin is doing a little better. That is cool about Gabs is she thinking about going into medicine? Anyway will check in with you guys tomorrow.


----------



## happy

Crohn's Mom,
I realize now that my first symptoms of IBD were years ago with 'gallbladder colic' with elevated liver enzymes, but no stones. At the time I really wanted surgery to remove the gallbladder because I thought that it would solve my problems. I am so grateful that the surgeon wouldn't do it and he did go looking for other reasons for the problems. No other tests were positive then and I had 'gallbladder' symptoms with elevated enzymes on and off for years since.

Since I was diagnosed with IBD and achieved remission-guess what- no 'gallbladder symptoms' and enzymes have become normal and stayed that way. I agree with everyone else--unless they are really sure that his gallbladder must come out assume it is an EIM. I also had a short acute bout of pancreatitis when my symptoms were at their worst. Having your gallbladder removed can cause other problems like chronic diarrhea-not what IBDers need.

May your son gets some answers, treatment and relief soon. Please do take good care of yourself.


----------



## Crohn's Mom

kimmidwife said:


> That is cool about Gabs is she thinking about going into medicine?.


Yes she is. She is pre-med with a major in Anthropology. She wants to be a colorectal surgeon  
She's also home with me until spring semester next year - we made a decision in April for her to take a break and try to get healthy. 

Austin had a horrible night of pain and vomiting again (well dry heaving). He's NPO now and were waiting for them to come get him for a CTE. 
GP doc also upped his pain medication and is now rotating diluadid and roxycontin every 2 hours. 
It's REALLY bothering me how much pain med he is receiving with no treatment or firm answer to a diagnosis. Only other thing he is getting is protonix IV. The new GI even took him off of the prednisone when he was re-admitted.


----------



## DustyKat

Oh, I didn't realise Gab was home with you until then but good to hear that she is. :ghug: There surely is no place like home and I hope the break does indeed get her CD back on track, bless her. :heart: 

I hope Austin is able to get his CTE done ASAP and it provides you with some solid answers as to what is going on. :ghug: 

Ugh, you are all well overdue for some long and lasting luck! 

Dusty. xxx


----------



## Crohn's Mom

Today they're back to saying surgery again. They did an ultrasound and his gallbladder is definitely not functioning. I read the report myself. 
The doc said there's much more wrong with him than that , but they're going to need to start there at least.


----------



## Tesscorm

Gosh, just so sorry that there hasn't been an easy fix for Austin!   Are they definite on the surgery or still running more tests?  How's he feeling?

How are you holding up?  I doubt you've had much time to catch your breath yet! :ghug:


----------



## Crohn's Mom

No nothing's definite yet besides these doctors are definitely driving me crazy! LOL 

The nausea meds are helping now so CTE tomorrow and now they're saying possibly another upper endoscopy too! 

I'm gonna pull my hair out


----------



## Tesscorm

OMG, I certainly do feel for you!  As tough as as any 'plan' can be, not having a firm plan is so much worse! :ybatty:

Good to hear you're not yet rocking away, pulling out eyelashes!   If you can, try to just get away for a little bit...  when Stephen was in the hospital, just grabbing a coffee and sitting on the bench outside for a few minutes helped! :hug:


----------



## DustyKat

I hope they get the CTE done and look closer at his TI before making any decisions on gallbladder T! Good luck! 

:hang: and thinking you! :heart: 

Dusty. xxx


----------



## CrohnsKidMom

My heart goes out to you.  This must be so tough.  I hope you gt some solid answers soon so you can know exactly what you're dealing with.  My thoughts and prayers are with you!


----------



## Crohn's Mom

He's FINALLY drinking the contrast for the CTE this morning. 

They're still going back and forth on surgery, no surgery, surgery , no surgery. Argghhh. 
Crohns, no crohns, crohns, no crohns. 
Argghhh 

On a positive note he's at least sitting up and talking and playing on his lap top this morning


----------



## Crohn's Mom

They say the CTE is "negative" 
They're doing ANOTHER upper endoscopy in the morning.

His fevers are now up to 101 +


----------



## Tesscorm

Hope today's endoscopy provides more answers and a plan!!!

Hugs... :ghug:


----------



## Farmwife

Hugs and hopes for more answers.


----------



## crohnsinct

It's been more than 12 hours since your last post...you are slipping! :tongue: Hope things are going well this a.m.. :kiss:


----------



## Crohn's Mom

His temp was up to 103.6 this morning. The Tylenol brings it down thankfully. 
But he has a raised red spot on his left arm at one of the old iv sites. The doctor circled it and they are going to run some blood cultures and try to figure out what the infection is.

The endoscopy went well. The nee GI said his duodenum is definitely abnormal and he did biopsies for crohns and celiac as well. He also said that he now agrees with the surgeons that he doesn't need his gallbladder out right now. 

Me - well when they were getting ready to do his scope I nearly blacked out- so the sweet nurses wheeled me away and gave me water and graham crackers. 
Argh - I think the pressures getting to me a tad bit


----------



## crohnsinct

Oh no!  I soooo wish I lived closer so I could run a big ole Italian Lasgana, meatballs and crusty Italian bread over....maybe a little contraband vino in a coffee cup 

Please take care of yourself.  EAT!  You are worrying this Italian mama!


----------



## xmdmom

Reading all this, I'm just thinking "why can't it ever be easy?"

(((HUGS))) to you and your family.  Hope that your son is feeling better soon.  Please remember to take care of yourself!


----------



## my little penguin

Hugs
Go to the cafe get something to eat. Or have them bring you a bag lunch .
Something


----------



## Clash

Sending Hugs!!! Remember to take care of yourself! Hope the temp stabilizes soon!!!


----------



## CarolinAlaska

I'm actually glad for an abnormal endoscopy.  All normal tests are just mind boggling.  I hope you can get some answers soon!


----------



## Crohn's Mom

I'm eating, I promise !  
Austin's doc thinks something may be up with my blood sugar. Maybe just from the stress - who knows. 
A friend of mine gave me one of those chewable glucose tablets and it helped a bunch  
My head is foggy today but the "passing out feeling is passing" 
It did happen two more times after that first one, but not since the glucose tablet and I have eaten  

Austin's resting right now so I am home for a bit. 
They took a ton of blood today so we'll see what those results say


----------



## Dexky

I just hope they come back some solid answers T!  Whatever they are, I hope the docs are confident in their dx's.

Take care of yourself girl!!


----------



## kimmidwife

Hi I was off for a few days so am just catching up. Glad Austin is doing a little better. Did they put him back on the steroids? If they think it is crohns it seems wrong that they would take him off them. I am very glad they are not running to do surgery. I am also glad you are feeling a little better. It sounds like once things calm down that you might need to get checked out. Has that fainting business ever happened before?


----------



## Kimberly27

No advice, just a giant hug!

Kimberly


----------



## Niks

Really hope you get some solid answers.  The stress and pressure is sometimes overwhelming. (((hugs)))  xxx


----------



## Tesscorm

Hope all (Austin, you) are improving and are able to enjoy a bit of the holiday! :ghug:


----------



## DustyKat

Good grief T! :ghug: I hope you okay! 

Any more news on Austin's bloods or any news? 

Thinking of you mate, :heart: 

Dusty. xxx


----------



## upsetmom

Thinking of you...:ghug:

I hope everything's ok.


----------



## CarolinAlaska

Stress does terrible things! <<Hug>>>.  I hope you are both perking up today...


----------



## Crohn's Mom

He's still admitted. 
They're trying now to switch him to oral meds again and send him home
With no solid answers I guess. 
They did another ultrasound last night but we don't know what the results are yet. 

I came home last night to get some rest myself after work and sleep. It was so nice  
My heads still a spinning here and there, (literally and figuratively lol), but hopefully it will stop soon. 

This is so frustrating I tell ya ! 

Oh and btw- the new biopsies are back and negative for celiac and crohns - only shows chronic inflammation.


----------



## DustyKat

Thanks for the update T. :ghug: 

Frustrating is right!  

What did the GI say about they saw when scoping? 

Is the no go with the Crohn's diagnosis based on granuloma's? 

Thinking of you! :heart: 

Dusty. xxx


----------



## Crohn's Mom

And it's changed again ...
Surgery tomorrow to remove his gallbladder


----------



## crohnsinct

Yikes!  Who's on first?


----------



## Jmrogers4

Sending hugs and prayers for tomorrow


----------



## ChampsMom

Hey T...

I'm sorry I've been out of the loop - I've been down with some kind of virus (stomach flu with vertigo - serious, serious vertigo... ugh...)...

Sounds like the rollercoaster from hell you've been on!  I'm so sorry... IF the surgery really happens tomorrow my thoughts and prayers are with you all and everyone involved with the surgery... 

God bless....


----------



## upsetmom

:hug:..I hope everything goes well with his surgery.


----------



## my little penguin

Good luck and hugs


----------



## Crohn's Mom

Thanks everyone ! 
It really is happening tomorrow ; we signed papers and everything ! LOL

Champsmom, I hope you feel better quickly !
I can totally relate to you with that serious vertigo right now ... :ybatty::ybatty:


----------



## Clash

I hope the surgery goes well, sending hugs your way!


----------



## ChampsMom

Crohn's Mom said:


> Champsmom, I hope you feel better quickly !
> I can totally relate to you with that serious vertigo right now ... :ybatty::ybatty:


Kin in our dizziness :hug:  

Take care...


----------



## Catherine

Wishing Austin a smooth surgery.


----------



## Tesscorm

Wow, I'm so sorry the surgery has to go ahead!  You really have had quite the ride lately :ghug: take care of yourself!!!

Thinking of you and praying all goes well tomorrow! :ghug: :ghug:


----------



## DustyKat

:eek2::eek2::eek2:

Oh my goodness T...:ghug:...Sending tons of love, luck and healing thoughts that all goes well Austin! :goodluck::goodluck::goodluck: 

Are they going to have a bit of a look around too? 

Is it keyhole or open? 

Thinking of you! :heart: 

Dusty. xxx


----------



## Dexky

I very much hope that's all there is to it T!  Hopes and prayers your way!!


----------



## Niks

Good luck, hope all goes well.

Hugs :ghug:


----------



## dannysmom

Thinking of you and hoping the surgery goes smoothly.


----------



## Crohn's Mom

Goodness, I'm nervous!

You would think with all the surgeries I have been through, and Gab's, and JJ I'd be used to this ... Nope! LOL

I know he'll be ok tho 
This waiting is the worst part ...


 HD


----------



## Crohn's Mom

He pulled through surgery just fine  

Surgeon said he didn't really see anything else "abnormal" in there, which is always a good thing to hear. 
He said it may take him a little longer to heal because of the duodenal ulcers, but hopefully this will help his pain now. 

If he tolerates things well enough today he said he should be able to go home this evening sometime


----------



## Tesscorm

Glad it went well!!!  Hope all go smoothly today; I'm sure you both just want to get home!!! :ghug:


----------



## Tink572

Glad to hear it went well!


----------



## ChampsMom

So glad to hear the surgery went well!  I'm surprised that after being there so long that they would let him go the same day after the surgery?  Is his fever gone?

I really hope he's feeling better T... (and you too!!)  

:hug:


----------



## upsetmom

Glad everything went well...:hug:


----------



## kimmidwife

My Internet has been spotty the past several days so I totally missed about the surgery. So glad he is done with it and sending prayers for a smooth recovery!


----------



## Crohn's Mom

We are home ! 

They gave him the option of staying tonight and letting them control his pain, but momma nixed that  

He's doing good tho and resting - I don't even think he realized how much better it would be just being out of that place  

Going to have to put JJ on "nurse" duty tomorrow while Gab and I work tho! It's a good thing I taught my kids to cook at an early age LOL. 

Thanks for the support everyone !


----------



## Mehita

Home sweet home!


----------



## Dexky

Crohn's Mom said:


> We are home !


That's awesome but wow!!  Things have really changed, for the better!  I hope you can convince him to take it easy for a while.  Good luck!


----------



## DustyKat

Woohoo! 

So good to hear the surgery went well and Austin is home! :dusty::dusty::dusty: 

God I hope things settle for you all T, it is long overdue. :ghug: 

In my thoughts mate! :heart: 

Dusty. xxx


----------



## Niks

So glad all went well and he's home  fab news xxx


----------



## 723crossroads

Great news, wow!!!!:dance:


----------



## Crohn's Mom

He made it through the night pretty well. He only woke me once for his pain medicine. Seems he's in more pain this morning, but I kind of expected that since he's on much less medication now, thank he was at the hospital. 
Eating small amounts and drinking a good amount of water - so, so far so good  

I'm going to try and talk to Gabs GI doc on Thursday and see if they are willing to take him on as a patient. 

On a side note - Gab is due for her Cimzia injection on Wednesday. Usually by the Sunday/Monday before its due (she takes it every two weeks) she is exhausted, and aches in her bones and her eyes start getting very dark. 
Well she started taking Magnesuim supplements about 10 days ago, and we are assuming they are the culprit for her NOT looking and feeling sooo terrible right now! Don't get me wrong, she's not "healthy" but there's a definite difference in her energy level and her arthritis pain; and her muscle twitches have stopped ! 
Hey, we'll take it ! lol


----------



## kimmidwife

That is amazing about Gabs! I am glad Austin is home and eating and drinking. Sending thoughts for a speedy recovery. I will be interested to hear if the magnesium continues to help with those symptoms.


----------



## Tesscorm

Glad to hear things are improving for both Austin and Gab!!!

Hoping for a quick and uneventful recovery for Austin!  

And, good news on Gab - that would be so great if the magnesium can continue to help alleviate some of her symptoms!

:ghug:


----------



## DustyKat

Hoping all continues to go well for Austin T! :ghug: and Gab's doc takes him on. Good luck! 

Wow, that is good to hear about Gab! I'm with Kim, I will be very interested to see how she continues to go. Having Matt and Sarah on supplements and in remission I can't gauge if they make a difference. Is Gab on zinc too? 

Dusty. :heart:


----------



## my little penguin

DId they test Gab for Mg or did you just add it to see if it helped?

WE are grasping at straws here for Ds so,,,,,,,


----------



## Crohn's Mom

We are doing it on our own MLP. 
Her GI didn't really agree that she should take it because he said it has a tendency to cause diarrheal, which of course with Crohns patients isn't good  
Gab did her own research on it, and I have been for quite some time. She decided it was worth the risk w BM issues if it helped with other things. Turns out she's not having BM issues any worse than the "usual", but it definitely seems to be benefiting her in ways. 

Now if only it would cure those 2 nasty fistulas on her scar that are causing her LOTS of pain today  

Dusty - she is not using Zinc. 
What are the possible benefits of that? 

She also takes D3 for the last few months (her Vitamin D level as of 2 weeks ago is 43.) (I think that's still on the low side ??) 

And, 1000 of B12 and as of 2 weeks ago her level is 1089 so it's high right now. (She hasn't taken it this week since we got the blood results - waiting to see what GI has to say as to why it's high - she's been taking that for a year at least with no problems)


----------



## my little penguin

I know his neuro said if he ever used Mg to balance it out with B2 ( riboflavin) since that helps from a migraine standpoint.
May ask the GI about adding Mg.


----------



## DustyKat

Have Gab tested for zinc deficiency. I had Matt done and sure enough he was low, thanks David!

It has been linked to symptom improvement and improvement with issues associated with leaky gut (intestinal permeability)

http://www.ncbi.nlm.nih.gov/pubmed/11383597

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1419071/

http://www.bcm.edu/cnrc/consumer/archives/zinc-Crohn's.htm

I have Matt's levels tested each time he has his bloods done. 

Matt has had no issues with his magnesium supplementation either.  

ETA: 



> Zinc is involved in numerous aspects of cellular metabolism. It is required for the catalytic activity of approximately 100 enzymes [1,2] and it plays a role in immune function [3,4], protein synthesis [4], wound healing [5], DNA synthesis [2,4], and cell division [4]. Zinc also supports normal growth and development during pregnancy, childhood, and adolescence [6-8] and is required for proper sense of taste and smell [9]. A daily intake of zinc is required to maintain a steady state because the body has no specialized zinc storage system [10].
> 
> http://ods.od.nih.gov/factsheets/Zinc-HealthProfessional/


Dusty. xxx


----------



## Crohn's Mom

Hmmm ... Seeing as how she just had bloods drawn two weeks ago it may be a while before they're done again. 
Is there any potential harm in supplementing blindly ?


----------



## DustyKat

It is possible to have zinc toxicity but in view of Gab's resection I doubt this would occur if you start conservatively and also look at what her dietary intake may be. 

I know with Matt his has never really moved away from his favoured diet that closely resembles that of a low residue, so not huge amounts in that. 

Have a look at Matt's thread from close to the bottom of page 18 on, David has some good info and links re zinc and magnesium. Here is a link for zinc:

http://lpi.oregonstate.edu/infocenter/minerals/zinc/

Dusty. xxx


----------



## Crohn's Mom

Just a little update :
I've sorta crawled into a bubble for a few days so I don't get too overwhelmed with all this illness going on with my kiddos. 
Austin is still about the same. He started vomiting again yesterday and insisting that I take him back to the ER so I did. They ran another ct and X-ray and said they were negative for any perforations or anything else. They also ran blood and urine tests and they were fine as well. No fevers. They gave him pain meds and nausea meds and sent him home. I have made an appt w Gabs GI doc but it's not until the 7th next month. 
That's really good tho considering I was told theyre on a waiting list for new patients till November ! Thankfully, we have a long standing relationship w the doctor and he didnt hesitate to take him on. 

I hate to say this, but honestly , I think he's having withdrawals from having sooooo much iv pain med while he was hospitalized and he doesn't even realize it.  

As far as Gab - well, ill update her Cimzia thread soon, but long story short - she is officially done with Cimzia and it has failed her. She has very large ulcers, and a lot of them, at the resection site. She will be switching to Remicade and will be getting her first infusion this coming Wednesday in hopes to stop this monster in its tracks. Her doc is very concerned that she has a fistula forming beneath the stoma scar and doesn't wanna waste any time. 

Fun stuff huh!


----------



## my little penguin

Good luck with the appt.
Fwiw DS had chronic vomiting with his crohn's in the beginning
Once or twice every week or two weeks .
We didn't know he had crohn's at the time.
His blood work was normal as well
So was his upper Gi with sbft.
Never easy

Wishing Gabs lots of luck with remicade.
It was our wonder drug
Hope it is hers as well.


----------



## xmdmom

I'm so sorry that Austen is still feeling ill.  I may have missed this- what did the gallbladder end up looking like when they took it out? Did the doctors feel sure that the gallbladder was the cause of the symptoms?

Also, are his doctors able to do MRIs to limit CT exposure?

Hoping Austen feels better soon!


----------



## Tesscorm

I'm glad you were able to get an apptmt relatively quickly!  Hopefully, he will be able to give some guidance as to what exactly is causing all of Austin's symptoms and how to move ahead with treatment.  If you're right about the withdrawal, is there anything you can give him to help lessen the side effects?

I also hope the remicade does the trick for Gab!!!  

Stay strong yourself, I hope you're taking care of YOU...  there's been lots going on and I'd bet you're keeping everyone *else *taken care of!!!  Don't forget about *you*!

:ghug:


----------



## Crohn's Mom

I have NO idea what to do about the withdrawals except what I am currently doing and that's basically insisting that he doesn't take what we have at home one second too early. I give him Tylenol in between. 
I've honestly never seen anything like how he's behaving and while I feel really bad that he thinks he's in that much pain, I don't feel like he really is. I know he's really uncomfortable, but there are definitely signs that it's not to the level he claims it is. It's unreal. 
Then there's that guilt that what if I'm wrong? What if all those scans and blood tests and scopes somehow missed something huge? 
I just don't know :/


----------



## Tesscorm

That is a tough call to make.    However, there's certainly no reason for you to feel any guilt...  at this point, you're doing all the right things whether or not the tests have missed something!   I have no doubt your instinct will tell you if he needs to go back to ER and, if not, then what you're doing for him is all you can do until his apptmt.  :ghug:

But, re the withdrawal, perhaps if you ask in the General IBD section, there may be other members who have had to deal with withdrawal...  they may have some suggestions for you??


----------



## xmdmom

Gosh, you shouldn't  be the one who has to determine whether this is withdrawal or something else.  What do the doctors or nurses think? Is withdrawal a real possibility given the doses of meds he received-- I have no idea.  You'd think the surgeon who operated could tell you how likely this was given the doses he got.

One more thing, was Austen on narcotics when he had the HIDA scan? I ask because I just read that narcotics can cause a false positive scan.

"_False positive HIDA scans may occur if the patient is not fasting, or has been fasting for a long period, if opiates have been administered (causing sphincter of Oddi spasm and failure of isotope to pass into the intestine), and in patients with a history of ethanol abuse." _


----------



## Dexky

Damn T!  That's tough especially about Gabs!  I hope the remi can clear all that up quickly!  God bless you mom!!  What a year so far for you guys!


----------



## Crohn's Mom

I agree I shouldn't have to be the one deciding this  
I just want to baby him and let the (doctors) deal with their jobs. Wishful thinking ! lol 

I've FINALLY got him calmed down after hours of crying and screaming and snuggled on the couch so hopefully he'll be back to sleep soon. 

Wow, this is hard !


----------



## Crohn's Mom

Yes, he was definitely on high doses of iv narcotics ! They were alternating 2 mg of diluadid and roxycodone every two hours !
That may explain why the surgeons were so against the surgery for so long?


----------



## xmdmom

:hug:Hugs! It sounds super rough.

So, was there any other indication (pathology, or other test) that showed the gallbladder was abnormal?  As I said, you may have already posted and I may have missed this.


----------



## Crohn's Mom

Yes there were also two ultrasounds that's showed a significant amount of sludge backed up into his gallbladder. 

Guess it doesn't matter now since they took it out lol.


----------



## Dexky

His liver numbers ok T?


----------



## xmdmom

Is his pain now the same (place, character, type) that he had prior to surgery?


----------



## Crohn's Mom

Yes they all went back to normal before he was released. 
I've seen his blood results myself and they all looked (fine).


----------



## Crohn's Mom

xmdmom said:


> Is his pain now the same (place, character, type) that he had prior to surgery?


Yes it seems to be the same pain.


----------



## xmdmom

Ok I really have no expert knowledge of gallbladders but am trying to discern if the sludge was an incidentaloma rather than the actual cause of his pain.  If it wasn't the cause, then of course one wants to know what was, because that could  be the cause of his current pain.  Does that make some sense?

I just read sludge can occur simply due to decreased intake and in most people sludge doesn't cause any symptoms. But in some, it does cause severe right upper quadrant abdominal pain nausea vomiting diarrhea, fever chills pain after fatty or spicy foods.


----------



## DustyKat

Oh man T...:hug::hug::hug:...my heart breaks for you.  

I hope the change of med is just what Gab needs mate, lord knows she is long overdue for a very, very long break from this. :ghug: 

Austin: I will be honest T and say I have very real doubts that all this is down to his gallbladder. Don't get me wrong, I hope it is and all this will soon be a long distant memory! No doubt it is more than possible for a young, fit, adult male to have a primary problem with his gallbladder but it would surely be the exception than the rule. 

In all the tests they have done has a faecal calprotectin been performed? If not ring and see if the GI (Gabs) will order a test now before he has consulted with him. 

The pain: You know your boy better than anyone so go with your gut T and no you shouldn't have to be the one trying to nut out if Austin is having withdrawals. 
Stranger things have happened and an addiction can occur quite quickly but i would still have a level of doubt it would occur that quickly given the level of pain his was in. 
Then there is the subjective nature of pain. I know for a fact that Sarah's pain threshold is considerably higher than Matthew's. That is not to say that his pain is any less real or valid but just that he is far more sensitive to it and doesn't cope as well with it and yes...I have seen some...dare I say it :ack:...what to me were quite dramatic reactions. Now strike me down! :lol: I will be honest and say that I do have to remind myself that he isn't me, or Sarah, IYKWIM. :wink: 

Thinking of you! Always! :heart: 

Dusty. xxx


----------



## Crohn's Mom

Well he's back at the hospital  
I was going to try and wait this out but it's too much...


----------



## DustyKat

Oh T... :ghug: 

Thinking of you buddy and hoping more than anything you get solid answers this time round! Sending you all the luck in the world that it is so! 

Dusty. :wub:


----------



## Dexky

I'm glad you can at least not worry about the should we or shouldn't we go back in T!  My heart goes out to you!


----------



## my little penguin

Hugs 
Hope they get to the bottom of it


----------



## Crohn's Mom

He's admitted again ...
Thanks everyone !
Hoping we get some answers this time too-
Good grief !


----------



## xmdmom

:hug:


----------



## kimmidwife

Just wanted to send a hug! Is there any way he can be transferred to the hospital where Gabs doctor is? That's Mayoclinic correct? If he is there inpatient wouldn't he then be seen by her doctor and not have to be waiting for an appt.


----------



## dannysmom

Oh T ... so sorry. Was Austin given oral dilaudid for home?
My husband and daughter both had spine surgery this year (Feb and May). We now realize that dilaudid does not work well for them. It does take away their pain but they insist within an hour that their pain is an 11 (yet by looking at their movement levels, I found it hard to believe.) When my daughter was finally switched to a proper amount of oxycontin & oxycodone - things were so much better. Coming off dilaudid (and even valium) caused mood issues. Maybe the pain doctor can switch the opioid.
HUGS!!!!


----------



## Crohn's Mom

I was actually going to take him to the Mayo ER today if he wasn't any calmer - he just kept insisting he needed to come back to this hospital last night.  
Considering he's 18, (almost 19) and he was calling friends to come get him, not much I could do. 
I have realized that he has a great deal of anxiety and he's really scared that he has some super rare disease and he's doomed. 
I feel like this hospital admission will be another waste of time but maybe ill be wrong ? 

They've got him on the exact meds as before - protonix, carafate, zofran, diluadid, and zolysn, along with iv fluids and he's NPO for now. 
He's down to 138 lbs  

We're waiting on a GI consult - the surgeon came in and doesn't think it's a surgical issue and thinks its the duodenal ulcers still; the GP came in and doesn't have a clue. (Go figure)


----------



## Crohn's Mom

I'm wondering if this is happening on top of things .... 

http://www.medicalnewstoday.com/releases/118746.php


----------



## my little penguin

Can you talk to him to try and transfer to the mayo hospital asap?
I would since the current place seems to be in the same pattern as before kwim.

explain that is he has something out of the ordinary you want him to go to the best docs who deal with that.
to get him fixed this time.
hugs


----------



## Crohn's Mom

That's what I kept telling him last night MLP. I told him I already have him in the system there and Gabs doc and nurse already know the situation and they're amazing and he's so lucky he's getting in to see them so quickly ; I also told him I would take him to their ER before hand if needed. He's just such an intense person, and as I said very high anxiety - couple that with ADHD and no impulse control and well- love him to pieces but he's bit impossible to get through to, and that's putting it mildly  

My gut is telling me that they won't keep him long here. Maybe another upper endoscopy to check on his ulcers, than they'll be lost again and say oh they just need to heal so were letting you go.


----------



## my little penguin

Ok
Does Gabs Gi have privledges at your current hospital?
Can you call and see ?


----------



## Crohn's Mom

No I'm quite sure he doesn't. Her docs office is a little over an hour and a half away


----------



## Crohn's Mom

So the surgical team just came in again and said obviously it wasn't the gall bladder causing the pain. 
We discussed that he has an appt w Gabs doc on the 7th and about her Crohns and the possibility of Austins Crohns. I told them that the only med that I have seen him respond to so far is the IV salumedrol while admitted the first time , but after being released and put on oral Prednisone things worsened.   After speaking with him, and us both agreeing that just because his biopsies are negative , if it looks like a duck ...
He is going to recommend to the GI consult that is supposed to be coming in that we start treating him as if he already has a Crohns diagnosis and then medicating him accordingly to see if it helps him. 
So now we wait to see if the GI agrees with the surgeon and dr. Mom


----------



## my little penguin

You go mom!!!
I think your are right on the the duck theory until proven otherwise 
Hope Gi listens


----------



## happy

Sorry to butt in, but even if you think that his reported pain is more than what he is actually experiencing, I think that right now he needs you to support him 100%. You can certainly use language such as he says, he feels, he reports etc., but as he is undiagnosed and they really are not sure what, or if something else, is wrong, he needs to be able to trust that you will advocate for him, no matter what. Young adults (actually anyone) can regress developmentally when under severe stress or pain--it is not pretty, but it does happen, just as a potty-trained child can become 'un-trained' when there is a death or separation in the family. (By the way, I had lots of sludge backed up too; went away when the IBD was treated; and the liver enzymes always went down again when I stopped eating.) 

I have experienced severe, excruciating nerve pain from a large disc protrusion in my neck that did not present in the 'textbook' way. I had to keep my arm resting above my head to take the pressure off the nerve and I had to keep moving--very entertaining for the medical staff to watch. I saw several doctors in two emergency departments who thought that I was nuts and did not want to treat the pain (except for one kind one--who has chronic pain from AS.) Once everyone saw the huge protrusion on the MRI, they couldn't write prescriptions fast enough. It was so large, it also affected my legs, which everyone had thought was impossible, so they thought I must have been malingering. Although my husband didn't understand what was going on at first, he stood by throughout the whole awful experience--our relationship would be very different now if he hadn't. It took quite a bit of fiddling to get the correct narcotic in the right dose and schedule to relieve the pain. Once the inflammation settled, I quite naturally didn't need the narcotics and was able to taper off myself, very gradually so as not to experience withdrawal.

The year I was diagnosed with IBD, the inflammation was first seen on a scope in September. I saw them on the scope. (If your son currently has unhealed ulcers like I saw, it is not surprising that he is in severe pain.) By December I was desperate, nothing else mattered in the world, but trying to find a way to eat without the pain and symptoms. If I  had been younger, with parents to care for me, I suspect that I would have behaved very much like your son--you just want it to stop.

I suspect that you are really worn out by now, Crohn's Mom. Don't let this problem jeopardize your relationship with your son--he needs your support, despite how he acts. ( And I know that you have given more support already than you probably even thought was possible .)

One more thing, I have experienced this regression from one of my own children this year. Once the stressor stabilized, they regained their independence and maturity. I had had one blow-up with them about their behavior- I am glad that there were no more, especially once we realized what the cause of the behaviour was. I believe that they would not have forgiven me, if I had given less support, and I would have found it hard to have forgiven myself. Now I can look back and be amazed that this adult child managed as well as they did during very trying times.

I so hope that you and your family get some answers and more help soon. :hug:


----------



## happy

Sorry Crohn's Mom--I was crafting my post-and missed your latest. Good for you!! Why we have to be our own children's doctors sometimes frustrates the heck out of me. (Not for IBD at my house though.)

May he soon be feeling better and may you soon be able to rest.


----------



## crohnsinct

Oh man T!  Can you juggle and more balls?!  I agree with treating him as if he has an IBD dx now!  O's doc did that the minute she was admitted and scopes weren't scheduled for another two days. He said he HAD to go through all the protocol...test for C diff and other things first and wait for those tests but that he was so sure it was IBD and that she wouldn't survive the clean out and scopes without first getting some healing so started her on IV steroids right away.  So they CAN do it.  I hope they do it.


----------



## ChampsMom

As much as I loathed being in the hospital with my son, leaving was even scarier - while there I felt like we had best chance of getting him what he needed.

I pray they are able to get his pain under control T... What a great Mum you are being there for him and your daughter... they are *so* blessed to have you...

(((Hugs))))


----------



## Crohn's Mom

You know ChampsMom, I have never really feared being home with an ill child after a hospital stay - until this time! 
I know everyone "feels" pain different and one may be more sensitive to it than the next (just as dusty said in an earlier post). 
It has really thrown me that my 6ft tall, previously 170 lb (boy) can be doubled over and literally crying and crying and begging mommy to help him. It really breaks my heart and I just don't know what to do to help.  Doesn't help that he doesn't have a proper diagnosis either so I can't truly reassure him kwim? 
Also, Austin has truly been a difficult child through the years and has had his share of rebellion and doing whatever he feels like doing (hence the reason he has his own apartment). So, in saying that, it truly is hard for me to decipher his true pain from possible (assumed) pain with his history. 
When I speculate that he may not be in all the pain he thinks he's in, it's not because I think he's faking for drugs, it's just because I am thinking out loud and I have VERY good reasons to suspect unfortunately. (I truly wish I didnt). 
I of course, will not put all of the details of his personal choices on here, but trust me when I say I KNOW him. 
I am his biggest, and quite frankly and sadly, his only advocate at this point in time.  
I do think he is realizing the error of his ways lately tho and hopefully this scary part of his life will get his attention and put him on the right track. 
I have complete faith in him no matter what and will be by his side every single second if that's what is needed. 
Happy - this was a response to you as well. I know you are well intentioned, but I feel the need to clarify that he and I have a good relationship and were actually getting closer through this. 

I so appreciate all the love and support here ! This has truly been so difficult and were no wheres near done - and it's even harder with Gab not being well at the same time.


----------



## Niks

Oh my goodness!  What a lot to deal with all at once. 

I really hope Austin gets sorted this time, and Gabs new meds does the trick.

Thinking of you all.

(((HUGS)))  :ghug:  xx


----------



## DustyKat

Just thought you might need a bit of a laugh T...this isn't you is it?!...


----------



## Crohn's Mom

That is hysterical!! LOL 

And yep - that's me!


----------



## DustyKat

It does bear an uncanny resemblance to you T. :ybiggrin:


----------



## Crohn's Mom

No word from the GI doc yet except for yesterday when he came in and asked for his history and said he's going to look at his previous scopes again. 
Waiting.. Waiting... Waiting ...


----------



## Tesscorm

The waiting is so hard! :ghug:  I hope you hear something soon!

How is Austin feeling?


----------



## kimmidwife

I so sope you hear something soon. I also soooo understand about stubborn teenagers who think they know best and won't listen. ( I have an 18 year old son.) it's very interesting that the solumedrol helpd and nothing else. How long was he on the prednisone by mouth? Maybe it just didn't that've enough time to work. Anywa I hope you get some answers today!


----------



## Crohn's Mom

Tesscorm said:


> The waiting is so hard! :ghug:  I hope you hear something soon!
> 
> How is Austin feeling?


Still waiting..
But Austin is definitely more comfortable today and has finally stopped vomiting at least.


----------



## DustyKat

Ugh! Waiting must be the suckiest thing ever! :voodoo: 

I don't expect you to recall T with the way I blether on but while I think the Prednisone  did help stabilise Matt as such he really only showed the response you would expect from steroids when they were given IV in the form of Hydrocortisone. 

:hang: 

Dusty. :heart:


----------



## Crohn's Mom

I think I do recall that Dusty  

He is scheduled to have an Enteroscopy in the morning with the GI doc to try and get a better look at his small bowel. 

They are also checking for Porphyria through the bloods and urine? I tried to read up on that a bit cause I've never heard of it. 
I guess it's good that they're trying to take a step back and see a different picture ?


----------



## Tesscorm

Glad he's, at least, feeling a bit more comfortable - nothing worse than seeing them suffering! 

Ugghh, more tests!  But, they'll hopefully give you some real answers!

:ghug:


----------



## DustyKat

Porphyria? Like you say it is good they seem to be thinking outside the square and covering all bases so I assume they are basing this on his severe abdominal pain and the fact that it can mimic IBS? Seems a long bow T but I'm sure stranger have happened! :eek2: 

I don't know a lot about it except that it is generally genetic and is a metabolic disorder. As far as I am aware though it does not have the ability to cause structural changes to the bowel. 

Good luck with the tests and sending you tons of luck that they provide real answers! 

Dusty. xxx


----------



## Crohn's Mom

Ulcers, ulcers and more ulcers is all I know right now ...
They want to do a colonoscopy tomorrow again.
Argh


----------



## xmdmom

Poor guy! Hope he is feeling better soon!


----------



## Sascot

Sorry to hear that.  Hope the colonoscopy goes well.  Hope they manage to come to a diagnosis for sure so he doesn't have to keep going through all the tests!


----------



## my little penguin

hugs
sorry to hear you are back on the hamster wheel


----------



## Niks

Oh no  hope he feels better soon  (((HUGS)))  xx


----------



## Jmrogers4

Sorry T, been away a couple of days, was hoping he would be feeling better and you would have answers. ((HUGS))


----------



## Crohn's Mom

Just got to the Mayo for Gabs first Remicade infusion and on the way here got the phone call, after Austins colonoscopy, ... It's officially Crohns 

Austin is MAD as hell. 
Hopefully he'll calm down by the time I get back and I can try and reassure him that his life's not over (as he puts it). 

Oh joy ... 
Even tho I "knew" it, it's still so hard to take in.


----------



## crohnsinct

Oh man T!  I am sure it is gutting you that you couldn't be there with him when he found out.  This is so unfair.  Crohns sucks:voodoo::voodoo::voodoo:


----------



## Niks

So sorry to hear that . Hopefully now you know, he can get the treatment he needs (((HUGS))) xx


----------



## Tesscorm

Oh, T...  so, so sorry! :ghug:  I can imagine how hurt and disappointed you are, even though you 'knew', there was always that hope that it might be something else.

I'm sure Austin 'knew' as well   Stating the obvious but having seen Gab go through so much, it must be scary for him as well.  Hopefully, once he commences treatment, he'll begin to feel better and into remission quickly!!!

Thinking of you and sending lots of hugs! :ghug: :ghug: :ghug:

(Also, hoping all goes well for Gab with remicade!!)


----------



## dannysmom

I also hope this means he gets proper treatment now! Hugs to all of you!!


----------



## Clash

So sorry to hear this, T! I hope a dx leads to the best treatment for him quickly! I hope Gab's remicade goes well!!


----------



## upsetmom

:ghug:..I'm so sorry to hear this.


----------



## Jmrogers4

Sorry to hear it is official now, hope he gets a treatment in place that works wonders quickly.


----------



## Crohn's Mom

I'm sitting here at Mayo with Gab and Austin is texting me saying they want to start him on iv salumedrol and Asacol? 

Ughh - I wish I was there cause they're so dumb! I'm going to email Gabs doc and see if he can help me out somehow with directing them until his appointment. 

I need a clone of me right now lol


----------



## kimmidwife

I just wanted to send hugs. This is so tough even if you did know it in your heart. I hope he can get on the correct meds quick and start feeling better.


----------



## happy

Crohn's Mom,
I am so sorry to hear that your son has this diagnosis. 
I am also very sorry that I caused extra stress to you with my last post. Despite the length of my post I was not very articulate. What I had really meant to do was to give you support for continuing to support your son despite his symptoms/behavior not matching what the tests/doctors said. 

I do know what it is like to be trying to seek help, without having much success. Hopefully you will be able to get some medical support for him soon, so that you can go back to just being his mom (which is a big enough job) and not his doctor too. :hug:


----------



## ChampsMom

Oh T... 

Cloning!  Indeed!!  

God bless you love...   I pray the doctor's are able to get the right combination of meds for him fast!! 

((((HUGS))))

Shell


----------



## ChampsMom

PS - Good luck with the first Remicade treatment!  (crossing fingers, saying prayers for Gab AND you!!)


----------



## Johnnysmom

Goodness!!  Hoping Gab's doctor steps up and can help you out.  Asacol!  Honestly, that  is a little scary.  Do they even realize it has been discontinued?  

I know you will get it worked out, praying it all goes smoothly.  I wish we were all there to give you a hand!

(((Hugs))))) And hang in there momma!


----------



## DustyKat

F*&# it T!!! 

I can scarcely believe I am reading this.  I hate it so much for you that you are going down my path T. :ghug: 

Such a heartbreaking time for you, :heart:, scary time for Austin, :ghug: and Gab no doubt will have a thousand thoughts flying around in her head, bless her. :kiss: Is there any solace to be borne out of this T? Knowing Gab then Austin is the luckiest guy around when it comes to having Crohn's. He has a sister that will not only look out for him and be there for him no matter what but they will develop a bond that will be unbreakable.  And not to mention his Mum, you are a champion mate!  

Asacol really? Yep T, get onto Gab's GI. When Sarah was diagnosed and the GI prescribed her meds to GP over the phone he hadn't even met her and we had no history with him. I so hope Gab's GI will be able to help you out. Fingers, toes and everything else crossed!

Thinking of you mate, I know you will find the strength, and those extra dozen hands you need to get through this, but even so just know that you never far from my thoughts and if you need anything then you need only say the word. :ghug: 

Loads of love! :wub:
Dusty. xxx


----------



## Dexky

Asacol HD, I presume and every GI in America prescribes some sort of mesalamine first so I don't understand the hoopla?  Still, I hope you can get him with the GI you know and trust!

I know it's not good news T but at least they've named the damn demon so now you can fight back!!

Many hugs!


----------



## DustyKat

Am I reading that right Dex? You don't understand why we think it is a croc of shit? 

Dusty.


----------



## Crohn's Mom

Yes, Asacol HD 800mg (sorry about that) - and isn't it used mainly for UC and only treats the colon? 

He has ulcers in his stomach, duodenum, terminal ileum,  jejunum and colon. 

No response yet from Gabs GI.


----------



## DustyKat

It's primary use is UC T although it is also used for Crohn's, mild to moderate disease.  

But the point is the one you have made...Asacol is designed for release in the large bowel only and Austin's disease is far more extensive than that. 

Not to mention, not that I want to!, that I very much doubt Austin's disease would be rated as mild to moderate based on his presenting and clinical symptoms.  I would happily be proven wrong though. 

Dusty. xxx


----------



## Crohn's Mom

Just got the email response and they agree (although they haven't personally seen his tests) that Asacol is not the right med for him. They suggested that if he's going to start something before his appointment with them, than it should be Pentasa because it time released and he will get Jejunal coverage. 

I'm getting ready to go to work and the doc hasn't come in yet to talk to him, but I have told Austin to request that they switch him to Pentasa.


----------



## Tesscorm

I do hope Austin's treatment gets settled soon!  So unfair that the responsibility of his treatment is falling on your shoulders as well! :ghug:

Praying that this will hold him over (and alleviate his symptoms!) until his appt in August!

:ghug: :ghug:


----------



## DustyKat

Halle-bloody-lujah! 

I can understand them erring to caution when they are making a suggestion sight unseen both physically, clinically and records wise. 

I hope it makes some sort of difference to him T, poor love. :heart: 

Now you have your 5ASA nightmare you can read mine as a little light relief on your tea break. :lol:

When we arrived back from Matt's GI appointment I rang the local pharmacy to see if they had Pentasa in stock. The guy who answered the phone is, well lets just say he is Pharmacist but is waiting for approval to be registered in Australia. So this is the conversation...

Me: Do you have Pentasa 500mg tablets.
Him: I'll just go check.
Him: No, but we have Salofalk.
Me: I don't want Salofalk. I want Pentasa. 
Him: It's the same. 
Me: It's not.
Him: It is. 
Me: It's not. 
Him: It is. 
Me: Bloody is not.
Him: It is.
Me: You're an idiot. 
Him: It is a 5ASA, just a different brand.
Me: Now you're just showing you're a bigger idiot than I thought you were a second ago.
Him: I know what I'm talking about.
Me: No you don't because if you did you wouldn't be telling me to give my son a medication that is designed to be released in the terminal ileum when he doesn't have one. 
Him: No, it is the same drug. 
Me: F*&% off. 

Then I hung up. :ylol: I wonder if he will ever attain registration? :eek2:

Dusty. xxx


----------



## crohnsinct

OMG!  That is hilarious Dusty! :ylol2:


----------



## Tesscorm

:rof: LMAO :rof:


----------



## happy

Next time I, or anyone I know, has medical personnel issues, I am putting you on the phone, Dusty! I just choked on my coffee--that was so funny. Good for you. I hope that Matt knows how hard you work to put them in their place on his behalf.


----------



## Niks

Haha! So funny Dusty  :rof::rof::rof::rof:


----------



## my little penguin

Rofl too funny dusty
Love it

T woohoo for the pentasa at least
Until he gets in to his new Gi


----------



## Tesscorm

happy said:


> Next time I, or anyone I know, has medical personnel issues, I am putting you on the phone, Dusty!


I've said before...  I want to skype you guys into Stephen's GI apptmts!  You are allowed to take an advocate, are you not?:ylol2:


----------



## Johnnysmom

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

Well done Dusty!!  I bet he is still speechless! :ylol2:


----------



## Crohn's Mom

Dusty - that is fricken hysterical ! LOL 

Austin has been released from the hospital and is home with me now. 
I am sending him to his dads house for the weekend because my husband and I are supposed to go out of town for a getaway and the Dave Matthews concert a few hours away  

Hopefully they will not kill each other while I'm away or drive me crazy via text and calls ! Hahaha. 

He's not feeling the greatest but his pain is lessened and I think he'll be ok for the weekend. If not his dad can always take him back to the (dreaded) hospital. 

Wish me luck that I actually get a MUCH deserved and needed little break!


----------



## my little penguin

ENjoy your time "off" and remember to breathe
Can he have instructions to return to the hospital where Gab's GI is this time?
just to be on the safe side.


----------



## Niks

Really hope you have a great weekend.  I am sure Austin will be fi e with his Dad! He can't be worse than Jaime's, who, because I was 45 mins away - at work, went and picked her up from work because she collapsed again. 

Instead of taking her to hospital, he let her friend take her, she got morphine for pain and discharged herself! Grrrrr...

Glad Austin is out of hospital. 

Hey, who is Dave Matthews!?  Have fun!!  xx


----------



## Dexky

DustyKat said:


> Am I reading that right Dex? You don't understand why we think it is a croc of shit?
> 
> Dusty.


That's right :dusty:!!  And I know your little convo with the "pharmacist" was really just a veiled message calling me a dumbass!!  Oh yeah, I know you too well!!  Pentasa, asacol...whatever!!  It's still mesalamine and the first line of defense, albeit a safe and ,unfortunately, unlikely to achieve much on it's own choice!


----------



## kimmidwife

Dusty,
That is so funny! Way to go, except I then would have called back and asked to speak to his boss and tell them what an idiot this guy is and he does not deserve his registration and that he should not argue with the patient or the parent of the patient. T have a great time I love Dave Mathews!


----------



## DustyKat

@T - Sorry I hijacked your thread T! :redface: 

Oh T, I hope all goes well with Austin at his Dad's and that you have an absolutely fab weekend away with hubby! It surely is a loooooooooooooong overdue break for you mate. 

	
	
		
		
	


	





@Dex - LMFAO! It that was aimed at you you wouldn't be left guessing! 

@Kim - I did ring back a couple of days later and speak with the Pharmacist. I told him not only did I not appreciate his argumentative tone but I was deeply concerned by the fact that what if it hadn't been me that he was sprouting his crap to but someone that was newly diagnosed and therefore unfamiliar with the drugs. He wasn't left guessing that I was less than impressed. :smile:

Dusty. xxx


----------



## crohnsinct

Who is Dave Mathews?!  Really?! He hasn't reached Oz?  

T - have a great time!  Make sure hubby packs your wine!  Did you hear about Dave and his recent concert?  Was riding his bicycle to his concert, got a flat, two people stopped to help him and drove him to concert.  He gave them front row seats,  signed their tickets, "thanks for the ride" and so on...so keep your eyes on the side of the road!


----------



## Tesscorm

I'm glad Austin's finally home!  And VERY glad you get a break this weekend!!!  Go have a great, fantastic time!!!  You deserve it! :banana:


----------



## DustyKat

crohnsinct said:


> Who is Dave Mathews?!  Really?! He hasn't reached Oz?


Oi! We may be the Poms bastard children but we know who DMB are! So don't lump us in with them! :nonono: :lol2:

Dusty. :tongue:


----------



## crohnsinct

Haha Dusty I thought upset mom wrote that.  But really? The UK is supposed to be all about the music.  What is going on over there?


----------



## Crohn's Mom

I'm so excited to leave today! LOL 
And yes CIC, there will be wine packed  

Austin is off to his dads and not exactly happy about it lol. He'll be fine tho  (right?!?!)


----------



## Niks

He WILL be absolutely fine!! 

I am just going to search on You Tube!! I recon I could look  right numpty! Lol.

Have a fabulous time  xx


----------



## Tesscorm

He will be FINE!!!  And, you go out and ENJOY!!  

When the worry or any 'negative' thoughts try to push their way in (because, ugghh, it seems they're always trying to nudge their way in! :ymad - PUSH THEM OUT!:arghmatey_ani:    You need this weekend away to recover a bit yourself...  Remind yourself that any worries or thoughts of that nature will serve absolutely no useful purpose over the next couple of days and you'll just be robbing yourself of your own needed 'recovery'!

Have fun!!!!!!:dusty:


----------



## DustyKat

YES! HE WILL BE FINE! :lol: 

Enjoy, enjoy, enjoy T! 

Dusty. xxx


----------



## Dexky

Have fun T!!


----------



## crohnsinct

Whoa Dex!  Don't scare me like that!  I saw this thread updated and thought crap something happened.  Glad to see you are just a little behind.  Get with it brother!


----------



## scanners20

I am so sorry. I hope you will get answers soon! Best of luck!


----------



## Sascot

Hope you had a great time away!  Hope Austin was okay at his dads


----------



## Dexky

crohnsinct said:


> Whoa Dex!  Don't scare me like that!  I saw this thread updated and thought crap something happened.  Glad to see you are just a little behind.  Get with it brother!


What?  When was the concert Fri or Sat?


----------



## crohnsinct

She left Friday.  IDK what night the concert is/was.  Hoping no news is good news!


----------



## Crohn's Mom

Well - we had a very nice time at the concert  

I'm so glad we did, because Austin is readmitted once again. 
I picked him up this afternoon from his dads, and honestly he looked a little better, even tho he was still in pain. 
Anyhow, long story short, back to the ER and he's admitted again. 
I don't think he should be there - I hate that hospital! 
I had told him I was going to contact his pediatric GI office in the morning and see about getting him into see one of the adult GI's there in the next day or so - he didnt want to wait. 
Here we go again ...

But hey ... The concert was amazing!!


----------



## Tesscorm

Wow, I'm so sorry things just can't settle!    I hope the hospital can, at least, make him 'comfortable' while you try to get him to see his new GI ASAP!!!

I wish your weekend didn't have to end this way...   but, am glad you had a couple of days away and hope you got some rest!!! :ghug:


----------



## CarolinAlaska

Hi T, sorry I've been MIA.  Sorry your son has been suffering so, but glad, at least he has a diagnosis.  I can't help but think of Nik's Jamie, still waiting for a diagnosis and proper treatment.  I'm glad you were able to get a way - I hope you were able to enjoy it as well...  I hope your son is feeling well again soon.


----------



## Niks

That's such a shame. Hope you get things moving for him.

Glad you had a great concert, hope you weren't worrying too much xx


----------



## Dexky

Have you spoken with Gab's GI about seeing Austin?  Sorry you guys are back in T!


----------



## DustyKat

Ugh! So sorry to hear this T!  :ghug:  :ghug:  

@Dex - He has an appointment but couldn't get in until the 7th August. 

Good to hear you had a fab time at the concert T!  

Dusty. :Karl:


----------



## Crohn's Mom

Thanks everyone  

They're starting him on iv Salumedrol and he's getting iv fluids. 

And that reminds me - they never started that the last week when I said they were going to - only the Asacol! 
I think, my opinion once again, that it will help his pain tremendously - 
Can't wait till it proves me right! LOL 

I'm also glad that they are not allowing an overload of pain meds this time either! The doc explained to him that they're very constipating and can make the pain worse that way. (Which is exactly what I tried to explain) 
He's much more comfortable now tho at least with the (small) does of diluadid they are allowing.


----------



## CarolinAlaska

I'm glad he is feeling better.  I hope you were right!


----------



## Dexky

If they are going to use iv Salomed, are they mentioning pred after he is discharged?  I know you're not gonna get much from the regular hospital staff but now that he has a positive dx, he needs a plan.


----------



## Crohn's Mom

Yes Dex he will be. 
I was starting to wonder tho because they were fighting me on sending him home with the steroids and fighting me on the Pentasa switch from Asacol. 
The GI just finally conceded to both  
He may be released tomorrow again - hopefully. 
He has been asking them to keep him for a few days to see how he does with food before sending him home, so we shall see.


----------



## kimmidwife

It would make sense for them to keep him at least another twenty four hours until the IV solumedrol has a chance to kick in. May be you could hint at that to them. Especially as we all know when there is a lot of inflammation and the gut is not absorbing well. IV is the best way to get things to settle a little and then switch to by mouth once it's started to kick in. I know from my medical experience and Crohn's experience with my daughter we usually kept people on the IV steroids for at least forty eight hours before switching to by mouth.


My Disclaimer:
Just saying as a mom of a crohnie to ask the doctor about this not giving medical advice.


----------



## Dexky

If he's asking to stay in, he must feel awful T!  I really hope these stop-gap measures keep him in check until he sees a dedicated GI.  Good thing you're his mom!!  They'd have probably sent him home with milk of magnesia!!


----------



## Sascot

What a shame.  Hope the IV meds kick in quickly and make him feel better.


----------



## Crohn's Mom

Came to visit after work today and he looks much better ! 
He seems so much more comfortable - he's actually watching TV and laughing  
They cut his pain meds back to every 4 hours as well. 

He still says "nothing's working" but it's obvious something is.  
Hopefully his anxiety about things will settle a little more as he begins to realize he won't have to live in horrendous pain all the time once the right meds start to work


----------



## DustyKat

I was going to say the same thing...when a kid actually asks to go to hospital or stay in...well it ain't rocket science! I think the words that strike the most fear in my heart are:
Mum, I need to go hospital! :eek2: 

With a diagnosis of Crohn's, flaring and relapse Matt's stock standard treatment has always been 5 days of IV Hydrocortisone and Antibiotics before switching to oral. He had that regime three times in all over a 6 week period. This was at different hospitals too so I don't know if that is a standard regime here. 

I so hope they keep him on the IV meds long enough for them to have an effect so the oral can then take over, bless him. :heart: 

Good luck T! 

Dusty. xxx


----------



## Crohn's Mom

Just a little update :

Austin is still in the hospital. 
He had a SBFT test this morning but they are taking their sweet time reading the results. 
If they don't "find anything" on this test then they may release him tomorrow. 
The GI doc that came in today said he really wants to order the Prometheus test, but doesn't think that we will get insurance approval as an inpatient; so we shall see. 
Austin is looking better tho and eating a lot - I mean A LOT! LOL. 
Problem is he is still vomiting some again. I believe that's why they ordered the test this morning tho, to look for a narrowing/stricture etc. 
otherwise, his pain is being managed and they are trying to switch him to oral meds again.


----------



## Niks

So glad he's looking a little better, hope you get test results back soon and you can get him home! Is he getting fed up yet?? Xx


----------



## DanceMom

What are they giving for pain?


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## Crohn's Mom

Well he's finally home! 
He's on Pentasa (1000) 4x's a day
Prednisone 30 mg 1 x per day 
Omeprezole
Diluadid and morphine for pain 

The GI doc there also prescribed him Imuran - 
Interesting that he didnt even have the Prometheus test for it yet so I won't be giving him that one! 

His appointment w Gabs doc is coming up on the 8th (my mistake w the 7th) so hopefully he will hold up till then


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## Tesscorm

I'm glad he's finally home!  I hope he holds out until the 8th!  

If he seems to have any problems at all with food, consider replacing a meal (even if only partially) with nutritional shakes, perhaps allowing his bowels to put in less effort in digesting meals??

:ghug:  :ghug:


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## Dexky

Did they schedule the prometheus test?  Or do you expect to wait until he sees Gab's doc?


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## Crohn's Mom

We have to wait to see Gabs doc - I'm sure they will do it that day


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## kimmidwife

Glad he is home! Hopefully Gabs doc will get him on a good plan and he will continue to improve.


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## Crohn's Mom

Tess - I have him drinking Boosts whenever he can tolerate them. 
He was drinking Ensure clear in the hospital and adding powder protein packs to them, but they upset his stomach more than the Boosts. 

I think MLP mentioned Peptamin at one point? Is that prescription? I can't find those in a store here.


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## kimmidwife

It is prescription. Sometimes the insurance will pay if you can get approval from them.


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## my little penguin

You can order peptamen without a prescription from the nestle nutrition store.
Just call
Insurance will only sometimes pay - but need a script for them to pay and you usually have to get it from a durable equipment medical supply company .


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## Niks

Glad he's home, you must be so relieved, it's exhausting having kids, however young/old in hospital for a long period 

(((hugs))) xx


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## my little penguin

http://www.nestlenutritionstore.com...on?rank=2&v1=rank&asc=1&catpath=digestive.3.1

Link


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## Crohn's Mom

Thank you MLP ! 

I know Austin has been laying in bed for basically 6 weeks now - 
However, his hips and legs are hurting him a lot. 
Is this possibly an EIM coming to surface already? Or is it just from no movement, or both? He's limping around the house. 
Just curious on thoughts ....


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## Kimberly27

Did you have a long drive home?  Maybe just bed sore?

Kimberly


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## Crohn's Mom

No - only bout 10 mins.


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## my little penguin

DS gets moving joint pain
Back
Knees
Ankles 
Hips
Muscles in general leg arm
He sees a Rheumo every two months to be monitored
I would see if your son could get in to rhuemo as well
It really help DS
He shows him stretches 
Warm water stuff
But the key is to keep moving when it starts to get sore .


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## Sascot

It's a really difficult one.  You feel sore so you don't want to move around then you get worse if you sit around doing nothing.  Like mlp said - best to keep moving around.  If it hurts then he could do short bursts of gentle exercise so he doesn't overdo it.  Again - a warm bath is always great for sore muscles.  Hope it gets better.


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## kimmidwife

It could be a combination of Crohn's and having been in bed so much. Do you guys have a pool or access to one? Swimming is so good for helping get the strength back and it is not hard on the joints.


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## Crohn's Mom

We don't have a pool but he may be able to go to a friends house to swim some  

He's doing pretty well since he's been home. I have him drinking at least 3 boosts a day, plus he's eating pretty well and I'm cooking for him every chance I get so that helps as well. 
His pain is still there, but manageable and he's not taking much of the diluadid and only took the Morphine pill once yesterday and once today (he is allowed twice). 
Looks like he will be able to make it till the 8th for his Mayo appointment!


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## DustyKat

Hey T, just catching up...:ghug: 

Good to hear that Austin is home hun.  

I agree with the hip and leg pain, maybe a combination of both lack of condition and his Crohn's? And yes! to the non weight bearing exercise! Also do you have a bath? As mlp has said, warm water is very soothing to aching joints and muscles and throw in some Radox (do you have that in the US?) if you have it. 

Now, how did Gab do when she first started the immunosuppressives? 
Not that it applies to everyone by any means but when Matt was diagnosed he had the TPMT the same day but as a rule of thumb we started him out 50mg dose that day as well because Sarah didn't have an issue with Imuran. Don't blame you for waiting though! and the appointment is fast approaching anyway. 

Hoping all goes well until the 8th! Fingers, toes and everything else crossed! 

Dusty. :heart:


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## Clash

Dusty, I've never heard of Radox, is this the one you recommend? I saw different kinds, I may try to order some.







Thanks!!


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## my little penguin

Yeah none here either ?
Anything weird from an allergy side of things on the shampoo ?


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## DustyKat

@Clash - I usually get either Muscle Soak or Muscle Soothe in salts. Matt usually uses them in the bath after soccer. I also used them when he was unwell and achey. I don't know if they have an added benefit but they don't do any harm and Matt reckons they are good. They have been around forever here, Mum use to use them on us when we were kids! :lol: 

@mlp - Matt has been using the Lemon and Tea Tree Shower Gel & Shampoo for some time now and loves it, it is his favourite combined shower product. He hasn't had any problems with it but then he doesn't have allergy/sensitive skin issues either. 

Dusty.


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## Clash

I think we may try this sounds great for after sports, thanks Dusty!!! You rock!


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## Catherine

We use Epsom Salts.


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## Crohn's Mom

Just went and picked up Austin records from his hospital stays to take with us Thursday morning. 
I was looking them over and saw they did a FCP test ...
His level was 262 ! That's really high right? lol 
I'm new to that test since they weren't using it when Gab was diagnosed. 
His Sed rate had also gone up to 54. 

Guess I'm still amazed at how long they kept saying "no Crohns" 

P.s. Austin put on 10 lbs this past week ! :dance:


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## Mehita

So glad he's feeling better!

FCP of 262 is above the normal range, but for perspective, when my DS was in a flare with diarrhea 15x/day, pain, fever, etc, his  FCP came back at 1332.

I think generally GI's like IBD kids under 300 and anything over 1000 catches their attention.

Someone correct me if I'm off...


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## Crohn's gal since 1989

Glad to hear Austin is bouncing back!


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## Catherine

My understanding is the higher up the inflammation the less it rises the faecal cap.  Sarah highest reading was 620 and that caused her second round of pred.  She has small bowel disease.


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## my little penguin

WE were tole the same 1000'S would be a flare and above 50 they monitor.
DS was 234 in march ( flare in JAn)
latest was 77 so....


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## Clash

C's inflammation was located at his TI and his first fecal cal. was 1700 near the end of last year, this February it was 300(scopes looked pretty good so did MRE, some inflammation at the IC valve), in June or July(sorry don't have the notebook in front of me) it was 48. 

Glad to hear Austin is feeling better!!


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## DustyKat

Is Austin still doing well T? :ghug: 

Dusty. xxx


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