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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:
 
So sorry to hear that :(. Hopefully now you know, he can get the treatment he needs (((HUGS))) xx
 
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!!)
 
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!!
 
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
 
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.
 
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:
 
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!
 
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
 
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!
 
Am I reading that right Dex? You don't understand why we think it is a croc of ****?

Dusty. :)
 
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.
 
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
 
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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.
 
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:
 
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.
 
happy said:
Next time I, or anyone I know, has medical personnel issues, I am putting you on the phone, Dusty!
Click to expand...

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:
 
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! ❤
 
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.
 
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!! :D xx
 
DustyKat said:
Am I reading that right Dex? You don't understand why we think it is a croc of ****?

Dusty. :)
Click to expand...

That's right :dusty:!! And I know your little convo with the "pharmacist" was really just a veiled message calling me a *******!! 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!
 
@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.
guitar.gif


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

Austin is off to his dads and not exactly happy about it lol. He'll be fine tho :) (right?!?!) 😖
 
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 :D xx
 
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:
 
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!
 
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!! :p
 
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:
 
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.
 
:( 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
 
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:
 
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.
 
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.
 
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.
 
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.
 
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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!!
 
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. :p
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 :)
 
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
 
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.
 
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
 
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 :)
 
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:
 
Did they schedule the prometheus test? Or do you expect to wait until he sees Gab's doc?
 
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.
 
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 .
 
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
 
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 ....
 
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 .
 
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.
 
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.
 
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! :)
 
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:
 
Dusty, I've never heard of Radox, is this the one you recommend? I saw different kinds, I may try to order some.

200_CW.jpg


Thanks!!
 
@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. :)
 
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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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...
 
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.
 
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....
 
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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