Gastroduodenal Crohn's disease

[Farmwife]

I was wondering if any of you or your children have Crohn's of the stomach or duodenum?
What were the symptoms and treatment?

Is it easier to treat then lower bowel disease?

 

[Tesscorm]

Stephen did have some inflammation in his duodenum when he was diagnosed (but in other areas as well). His symptoms were as typical as they can be with crohns - d, fever, weight loss, etc. But, one of his very early symptoms, weeks before crohns was being considered was heartburn and the sensation that there was something 'blocking somewhere along the path' when he swallowed. It never seemed to be something that was extremely bothersome but, enough that he did mention it a couple of times.

As some of his other symptoms were beginning to present at this time, his GP has prescribed nexium (can't remember if it helped) and then, when his diagnosis followed a few weeks later, the nexium was continued because doing the EEN overnight with the tube gave him heartburn.

Since he's stopped using the NG tube, he's stopped taking nexium and hasn't had any issues.

 

[littlemissh]

I do. Symptoms were epigastric pain often worse at night, immediate pain eating anything, vomiting, severe anaemia from bleeding requiring transfusion. Scopes have shown I have had multiple gastric and duodenal ulcers and a perforated duodenum (ouch).

I am on very high dose omeprazole (80mg), weekly humira and intermittent nasojejunal feeding. It has to bypass the stomach for me otherwise I vomit it back.
I believe I have an unusually aggressive form though. Often use of a PPI is sufficient.

Just spent 4 weeks in hospital and have the dreaded NJ tube back in :-(, I also now have a portacath which I love!

 

[Johnnysmom]

Johnny does.

First symptoms were weight loss and loss of appetite. Then he start to have heart burn. (PPI helped a lot) Occasional nausea and had one weird vomiting episode that sort of came out of no where(at the dinner table at a restaurant). He had sharp stomach pains and mild stomach aches.

He was very pale, thin, sickly looking and tired a lot.

 

[littlemissh]

Loss of appetite and weight loss were also a big issue for me.I didn't really ever have heartburn though.

 

[Jmrogers4]

Jack does as well, symptoms were pretty close to tesscorm and johnnysmom. It was almost immediate pain after eating. I think this is mostly why he stopped eating in the beginning. He would eat a few bites and say his stomach hurt (upper abdomen).
PPI helped he stopped it a while ago. It seems like once disease was under control the pain stopped.

 

[Farmwife]

Thanks everyone.:hug:
So now if you have inflammation in the stomach does that ALWAYS mean Crohn's is there?

The Mayo GI believes since Grace's gastritis is "patchy" and slightly visible and
by the second scope went deeper it might mean Crohn's of the stomach.

I'm just trying to find out how others started.

I guess the stomach thing has just thrown me for a loop. :confused2:
Of course she has a g-tube so.....................................................

 

[my little penguin]

DS has crohn's in the stomach as well as the duodenum, TI, caecum and possible rectum.
upper GI is treated with PPI + normal crohn's meds
upper and lower ppi+ normal crohn's meds
so it doesn't really matter
only matters if upper go is the only place she has inflammation - then that is different
most children have inflammation in the upper and lower go track which is why and upper and lower scope is pretty std.
adults tend to have corn's typically in the lower go tract only.

 

[littlemissh]

Gastritis is very common and most of the time it is not Crohn's. Many people without Crohn's have gastritis and many with Crohn's have non Crohn's gastritis - due to taking prednisolone, other meds such as NSAIDS, H Pylori infection(most common cause), bile reflux etc

Did they check for H Pylori infection, Has she been taking steroids recently?
The problem is that often due to stomach acid and other factors the histology doesn't always show typical Crohn's features in stomach/duodenal biopsies.

As MLP says, the treatment is much the same wherever the disease is anyway.

 

[Farmwife]

I asked the GI from Mayo that same thought.
Of course she said she doesn't have a crystal ball but she said the chronic gastritis/inflammation is patchy and defined like you might see in IBD?

After I hung up, I was wondering what the "defined" part meant?

She believes Grace is one of those cases that we're seeing Crohn's in it's VERY, VERY early stages. That alone freaks me out. I mean she has struggled and the GI is telling me it's still the "early stage".

Oh well, what will come will come and I still pray this is all wrong.:confused2:
Back into my happy bubble.


BTW, no Pred in 6 months. She had no H. p in her scopes.

 

[PsychoJane]

Last flare I had some duodenal ulcers. I only knew because I developed ileal fistulae. They could tell I had these ulcer from a pill cam exam. Other than the fistula I had no pain but I was losing weight and I was tired most of the time, along with many headaches. They went away probably thanks to humira but I'm not on any agent and I have been ok since I've stopped it and my calpro remains low so far.

 

[Momto2girls]

In Gracie's scope she had gastritis with h. Pylori. So I guess they didn't think crohn's b/c of that? We are now testing to see if maybe the h. Pylori is getting worse?

 

[my little penguin]

Ds was h pylori negative on his gastritis