In the hospital for...something

So over a week ago, I got what I thought was one more sinus infection. But this was different--complete and total nasal blockage, feeliing he**, and then my face and eyes started to swell up. The mouth sores I have had continuously for a month got even worse, and due to all this my next to nothin appetite went to completely nothing , all together too painful to even drink water. Went to the ER twice to be told I have a sinus infection last week and did get antibiotics and eventually some fluids and mild painkillers.

My GI and I talked about how this likely is inflammation related to my UC/probably Crohns and he told me to take my Cimzia a week early to help this along. I was finally admitted to the hospital on Monday by my ENT and by then I could barely walk and my face was extremely swollen-one eye swollen shut. I also have a bunch of pimple type sores all over my scalp and my lower abdomen.

So now I am being seen by GI, ENT and rheumatology to figure out what is going on, they think some kind of infection, they just don't know what. Wegeners syndrome and naso-labial Crohns are a couple ideas being thrown around, but it's also possible this is an infection related to the Cimzia.

I have been getting nonstop fluids, antibiotics, occasional painkillers and a great mouth rinse they call a stomatitis cocktail that helps with the mouth sores. All of this is helping me feel somewhat better, still can't handle solid foods, but soon.

So my colon is behaving for the most part, which is good, and I am happy this is finally being taken seriously, but they just don't know why I am so sick. All the docs are debating over my mouth and throat sores and about everything else.


Sorry so long, just needed to vent and wondering if anyone has dealt with anything like this.

Sheesh. sounds terrible.
Feel better!
Mary

I'm so sorry and I hope the figure it out soon. Please keep us posted and you will be in my thoughts.

Hope you find out what caused it and feel better soon. Sure sounds like an allergic reaction but what do I know.
Best wishes.

Yikes! ....you're not getting any breaks at all! Hope all can get figured out and that you'll be back to feeling much better soon.

House just throws pred at everything...but he keeps guessing! lol. sounds as though you'd be the perfect subject for him.

q

Thanks for all the good wishes..still at the hospital, they still don't know what this is. Lots of different things have been ruled out like anything viral and a couple autoimmune disorders. Still waiting on fungal cultures, strep, and a couple other things. Testing me for histoplasmosis, definitely off Cimzia if that is positive, biopsies and cultures taken of sores on body, sores in mouth and getting upper GI endoscopy to see if sores in esophagus.

My GI thinks its possible nothing will come back positive and this is all IBD related, again upping the possibility of Crohns. Still can't eat solid food and sometimes even liquids depending on how much my mouth and throat hurt. And apparently morphine does nothing for me, IV just makes me spacey for a bit and liquid does the same. They are having a hard time managing my pain, doubled my Vicodin, but on an empty stomach its pretty rough, and they gave me an acid reflux med but I was still so nauseous they called in Zofran.

Definitely frustrated, but everyone here is so great and kind. I like that they want to manage my pain as much as possible, though we haven't found an easy way to do that yet.

Hopefully I will get to come this weekend if I can eat a bit. Thanks for all the support, I really appreciate it.

Do you think you could possibly have shingles in your mouth? This happened to my mother-in-law. She still remembers it 40 years later.

Hope you feel better soon!

Thanks again for the support everyone! Still in the hospital and the docs just decided to put me on 40mg of prednisone. They tried doubling my Vicodin but that doesn't work so well when you don't have hardly any food in your stomach. Also, the nasty lidocaine gel they made me suck on before the upper GI scope made me even more nauseous and then I dry heaved for awhile, absolutely brutal. At least I don't remember any of the scope!

Hoping to start feeling better soon! Finally getting to see my kids tomorrow! Yea!

Any word on the fungal? I wasn't as bad, but think Remicade gave me thrush down my throat. My appetite totally came back after I was off it, no more lump in my throat. I thought I had crohns.

aquafly79,

So sorry you're feeling so lousy, and still in the hospital.

Did they rule out a reaction to one of the drugs?

Oh, argh..the GI drs at the hospital think my episodes of D and blood might be C.diff or something else besides just my body getting used to food again. Also they want to do an x-ray and probably a flex-sig as well. My colon is behaving like a child who needs attention and will do anything to get it!!

Thanks for the kind words InSoFla. The drs have calmed down with the C.diff hysteria(seriously, if you are in a hospital and they think you have C. Diff, they practically put you in a bubble and call the haz mat team). Technically the c. Diff culture was negative but my GI still wants to treat it just to be safe. No other episodes of D or blood so that is good. Feeling fine too.

I think I am FINALLY going home today! woo-hoo! I don't have a definitive dx, but it is thought that all my symptoms, namely the extreme sinus congestion/face swelling and my extremely sore mouth and throat that caused me to stop eating and drinking are extra intestinal IBD manifestations.

Crossing my fingers that the very short course of pred I was on(40mg for 4 days) will keep these symptoms away and that this doesn't start up again when I get home. I feel good about the plan set up with my GI to get me back in the hospital, I will call his nurse, he will call me and if i feel I need to be admitted again, he will
do it. I am very thankful that I do have a great, if very busy, GI doc.

Thanks again for all the support everyone!