Duodenum Inflammation

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

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

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

(((((Hugs))))))
 
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?
 
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
 
upsetmom said:
:ghug:.. Just wondering how Austin is coping with everything that's going on ?
Click to expand...

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

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:
 
: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
 
: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.
 
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?
 
Glad you've got out of hospital. Good luck with the treatment. Hope he keeps feeling hungry so you can feed him up!
 
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!
 
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
 
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 !
 
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.
 
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.
 
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?
 
Doctor sent us back to the hospital :(

They weighed him on check in and he's down to 145 pounds - good grief
 
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!
 
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.
 
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!
 
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.
 
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 ! :)
 
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:
 
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.
 
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!
Click to expand...
 
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
 
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
 
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!
 
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?
 
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?
 
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...
 
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
 
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
 
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.
Click to expand...

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
 
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.
 
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.
 
kimmidwife said:
That is cool about Gabs is she thinking about going into medicine?.
Click to expand...

Yes she is. She is pre-med with a major in Anthropology. She wants to be a colorectal surgeon :p
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.
 
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
 
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.
 
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:
 
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 😖
 
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! :eek: 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:
 
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
 
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!
 
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 :)
 
They say the CTE is "negative"
They're doing ANOTHER upper endoscopy in the morning.

His fevers are now up to 101 +
 
It's been more than 12 hours since your last post...you are slipping! :tongue: Hope things are going well this a.m.. :kiss:
 
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 :p
 
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!
 
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!
 
I'm actually glad for an abnormal endoscopy. All normal tests are just mind boggling. I hope you can get some answers soon!
 
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 :p
 
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!!
 
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?
 
Really hope you get some solid answers. The stress and pressure is sometimes overwhelming. (((hugs))) xxx
 
Hope all (Austin, you) are improving and are able to enjoy a bit of the holiday! :ghug:
 
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
 

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