Duodenum Inflammation

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Crohn's Mom

Crohn's Mom

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

Am sure that being in hospital will help with getting answers faster.
 
Tried to send a bunch of hugs, but I guess this forum has a limit of 1!
Sending healing thoughts your son's way.
 
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.
 
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 :p
 
Oh man T...:hug::hug::hug:

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

Dusty. xxx
 
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:
 
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. :(
 
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.
 
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 - ....
 
Hope they find out what is going on quickly and get his nausea and pain under control.


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

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 :p )
 
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.
Click to expand...

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
 
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 💜❤💜❤
 
Just saw this thread can't believe I missed it. I just wanted to send hugs and support!!
 
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.
 
Oh my gosh! We love you T! Still holding out hope that those ulcers are from something else! :ghug:
 
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
 
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.
 
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
 
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:

:)
 
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
 
:( 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.
 
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 ... 😳
 
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:
 
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 :(
 
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.
 
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.
 
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.
 
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 :/
 
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
 
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.
 
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.
Click to expand...
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.
 
my little penguin said:
I have spent 6 years in allergy land.
Click to expand...

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

Dusty. xxx
 
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!
 
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!
 
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!!!
 
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:
 
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 :p
Click to expand...

I'm such a **** friend T!! I followed that whole episode and didn't remember it being Austin at all:(.
 
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 !
 
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!
 
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!
 
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.
:(
 
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 :(
 
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!!!!!
 
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 :p
 
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?
 
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.
 
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.
 
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.
 
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
 
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
 
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 , :(
 
So sorry T, hope things go well tomorrow and he gets a comfortable rest tonight. Thinking of you and sending lots of hugs
 
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
Click to expand...

Goes without saying hun. :ghug:

Dusty. xxx
 
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:
 
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 :p
He's in pretty good spirits considering :p
 
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)
 
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.
 
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 :(
 
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:(
 
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 :(
 

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