Good News For Me

[Isla]

Well I had my upper endoscopy done today and before the procedure he did some research on my behalf and had theorized I may have a rare disease called eosinophilic gastroenteritis. Once under they found what they call trachealized esophagus or corrugated ringed esophagus, this is highly correlated to eosinophilic gastroenteritis. Oddly enough this disease is related to allergies and asthma, so no surprise that as my allergies increased so did my nausea and other symptoms.

It is an inflammatory GI disorder though it is not either CD or UC. Eosinophils have been studied as to their role in all IBD diseases and may be something worth looking into if you are one of those that say "I feel like I have Crohns, but it's not the same" or "I have all the same symptoms but everything is coming back negative." Take a look at http://www.apfed.org/

My diagnosis is not confirmed, but that is what he suspected and that was what the endoscopy visually showed. I have to wait a couple weeks for the biopsies to come back to confirm or deny the suspicion.

Am I still welcome to stay on the board even if I don't have CD or UC?

 

[jed]

big congrats Isla!

and if i remember the rules correctly, i dont think your allowed to leave...

your here for good now.

the only way you can get out is by constantly telling us about a cure for Crohns, TYPiiNG LiiKE THiiS or by promoting WOW Gold.

choice is yours

 

[ladyB]

We'll keep our fingers crossed for the results.
Either way hope your around just as much either way.

 

[jed]

lol, my internet is capped at the moment (went over the limit) so its slower than dial up.

can someone check weather there are support forums for eosinophilic gastroenteritis??

if theres not then she cant go anywhere

 

[My Butt Hurts]

Yeah, like you need ANOTHER disease.
So what are they doing to treat it, and will your vomiting go away?
From,
Butt Groove
(ha - just for you, pinkitty)

 

[Isla]

Wow Gold and Jenny couldn't believe that her doctor Horde and Alliance Gold cheap those pants weren't even his and you should have heard what her mother Guide to Power Leveling

:runaway:

hehehe, it's ok that I like to play WoW though right !!!

 

[jed]

as long as your level 19 influence doesnt get used in the wrong way here;D

 

[katiesue1506]

Let me give this a try:

Chicken gave the WoW Gold a youthful try and found rubber Aloe Juice commented for the mascara foot.

 

[Isla]

Most of the treatments are the same treatments for Crohns, anti-inflammatories, steroids, elemental diet, and sometimes surgery. So not much changes in "what to expect" in regards to the things I prepared myself for in dealing with Crohns. The thing I did not expect is I very well may have to go the NG tube for elemental, since the disease is heavily regulated by food.

Here I thought I was getting off easy with just some Asacol...

DAMNIT!!!

 

[jed]

brief interlude - pen, when you find the picture you want to post from another website, right click on it, selct properties, then copy the whole line that says location, then back on this site hit the little square that looks like mountains (let your mouse hover over it (will say insert image), paste that line of text in it and voila! you have your pic done

 

[jed]

if you have pics of your own that you want to post, opena free account at imageshack or photobucket (google them), upload our own photo's there, then you can get the image text from there

 

[Isla]

Ya I was doing "better" with Crohns, thought I was in remission with just some pesky nausea. Glad I listened to you Pen and realized my nausea was totally not normal. Just think I might have just let it go on for much much longer without your advice!!

For pictures, sign up for an account at www.imageshack.us

Once you upload a photo there it stays there so if you are on like say 5 forums, you only have to upload the photo once to the site then just copy the link into your message using the "image tag" up in the menu bar of the text editor for the forum. Practice with this random Pen image from google:

http://www.geekologie.com/2007/11/23/rf-detector-pen.jpg

Go there and copy that link, then reply in this thread and use the image tag function in the editor and paste the link then post the reply. You should see the pic displayed.

 

[Isla]

Thanks Mike, thanks to you guys I now know all about steroids and elemental diets and NG tubes. I feel utterly prepared all because of you guys.

 

[teeny5]

I hope you stay Isla you give great advice and have great insight into things.

 

[Isla]

Aww well thank you! My research into this disease has shown it's a lot like Crohns and I still may have Crohns on top of it. Shrug, everything is just up in the air right now... I will know more in the coming weeks and months.

 

[RHOV]

hey, great news, Isla! i hope everything gets figured you for you soon. and please please don't leave. even if it turns out that you don't have crohn's (and i hope you don't because that's one more thing to worry about), you'll always be a crohnie at heart.

 

[Isla]

Oh I get pains, I have a standing order of Darvocet but I don't like taking it. Right now my belly is distended and as hard as a rock, I am throwing up, and am in a bit of pain. I am trying to take it easy since I took my last Darvocet like 4 days ago or something. I tried nothing by mouth for over 12 hours then liquids, no relief. So just now I broke down and ate actual solids - I am probably going to regret doing so

 

[Isla]

It started on Wednesday once I went under 40mg of steroids, if the pain increases I am just taking my butt to the ER. Right now it is between 5-6 if it gets to be between 7-8 I am going. Maybe I should just relax on the couch with my netflix

 

[Isla]

Ripples through the midsection so it is R, L, and mid. But it mainly hurts to the left of my bellybutton.

 

[theability]

The sounds of Crohn's is every where....I hate these hospital clothes, gowns and all...

Isla....I hope it all works at for the best, I just remember the days when they said I had a "

..."Brain cloud"......

rotf remember that movie...... its feels like a Crohnies adventure!!!! :voodoo:

 

[Isla]

I haven't gone in days, so today I took a left over colonoscopy prep to try to help. Now I am just shitting blood - I think today is the worst I have felt emotionally. I don't get to interact with anyone I am completely and utterly isolated, and just... sad.

 

[My Butt Hurts]

Ironic that this new news is on the 'good news for me' thread. Maybe you haven't "gone" because you were empty from your endo prep, and then you hadn't eaten anything for 12 hours, and then the liquid diet, and once you start after a prep like that it can take a while to get going. Good news, usually the bleeding just comes and goes and stops out of nowhere. Just another one of those fun surprises that we all get.
Are you stopping your Crohn's meds now that they say you don't have Crohn's?
I would wait a while IF at all, until you feel better, then do it slowly just to see.
And who said you had Crohn's in the first place?? I can't remember if it was a blood test, biopsy or what.
I just wish you weren't sad. That's not like you. Feel better.

 

[Isla]

I have been feeling crappy since I went below 40mg of steroids that I was using for my asthma attack. This morning I am finally having D and while my belly doesn't feel as rock hard and distended, the pain isn't going away either.

How I got diagnosed with Crohns is first by the blood test (pANCA ASCA), then about 6-7 weeks later there was a marked improvement in most of my symptoms due to, we suppose, the Asacol I was taking. The symptoms that went away or lessened was bloating, bloody stools, urgency, and the off and on D. The pain lessened but the nausea kind of grew and grew.

But Kim is right I am trying to avoid the hospital and ER as if it were the worst of my ex's. Guess I am just having a bad week.

It will get better, I am sure of it. Thanks guys for your concern.

 

[ladyB]

How's your pain level now?
Try going to the ER...sounds like it is getting worse.
Hugs

 

[Isla]

It is about a 6-7 on a single Darvocet and the most discombobulating symptom is I have been dizzy - been that way since Wednesday or Thursday, right now its hard to focus my eyes though I have no fever.

 

[ladyB]

More Hugs to you, hope you're able to get over the dizzies

 

[drew_wymore]

Good news about the dx but bad news you feel like poo =( And no you can't leave otherwise I won't be able to ask you out on an internet date! :voodoo:

 

[ladyB]

Is this moving to another thread for the date...we're all tagging along, right:lol:

 

[Creepy Lurker]

I have been feeling crappy since I went below 40mg of steroids that I was using for my asthma attack. This morning I am finally having D and while my belly doesn't feel as rock hard and distended, the pain isn't going away either.

How I got diagnosed with Crohns is first by the blood test (pANCA ASCA), then about 6-7 weeks later there was a marked improvement in most of my symptoms due to, we suppose, the Asacol I was taking. The symptoms that went away or lessened was bloating, bloody stools, urgency, and the off and on D. The pain lessened but the nausea kind of grew and grew.

But Kim is right I am trying to avoid the hospital and ER as if it were the worst of my ex's. Guess I am just having a bad week.

It will get better, I am sure of it. Thanks guys for your concern.

Any idea how they're going to treat the eosinophilic gastroenteritis? Could you bump the steriods back up?

 

[Isla]

OMG I had a brilliant idea for an internet date, gotta have Netflix. We could watch a netflix instant movie online while typing to each other HAHAHAHA. Aww geek love... anyway.

I called my doctor this morning, the pains are getting pretty bad and he hasn't called back yet I will be calling back in an hour to see, if he won't get back to me I will take myself to the ER.

Steroids treats a lot of cases of eosinophilic gastroenteritis but for others they require an NG tube. This is a really fascinating disease it can mimick Crohn's and sometimes people have both EG and CD.

What are the Symptoms of EGID?
Symptoms vary widely, depending on the area affected.
Symptoms include:
• Nausea or Vomiting
• Diarrhea
• Failure to thrive (poor growth or weight loss)
• Abdominal or chest pain
• Reflux that does not respond to usual therapy
• Dysphagia (Difficulty swallowing)
• Food impactions (food gets stuck in the throat)
• Gastroparesis (Delayed emptying of the stomach)
• Anorexia (poor appetite)
• Bloating
• Anemia
• Blood in the stool
• Malnutrition
• Difficulty sleeping

Since none of these symptoms are specific for EGID, and many occur at times in healthy children or adults, the diagnosis is generally sought only after the symptoms have failed to resolve. Eosinophilic disorders can mimic the symptoms of other diseases like inflammatory bowel disease, food allergies, irritable bowel syndrome and reflux, among others.

 

[ladyB]

I hope the doc gies you a head's up either way.
I think maybe you should just call and tell him you are going to the ER in half an hour...see what happens. Hugs too you, hope your pain ebbs

 

[Isla]

I called my doctor and went to the ER, was there for 12 hours (this morning, last night) I was put on a 24 hour liquid diet and pain meds and told if I used up my pain meds or I began to bloat again within those hours I would have to spend a few days in the hospital with NPO... ugg. They aren't even considering the option of steroids?!?! I have no idea why they would want to go straight from possible flare to admittance to a hospital. Sometimes they make no logical sense.

BUT some good news, I figured out part of my problem with my GI doc, it is his staff. They relay to him what they *think* I mean or say, not what I actually say nor mean. So today I decided to write him a letter and for-go the nurses "better judgment" of what I REALLY am saying :ymad: I don't know why I hadn't thought of that before. My GI doc is just 5 minutes from my house! So I typed it up and handed it off to the receptionist in an envelope marked

For Dr. Oshin Only
Confidential

Sometimes I can be a real stinker! Anyway I have had like an hour or 2 of sleep and my daughter will be home soon so I am gonna veg out for a bit!

 

[Creepy Lurker]

I consider myself (sort of) lucky. I have a pretty bad case, and am on what my consultant calls his 'awkward patient list'. I deal directly with him now and not through any nurses or junior doctors.

How did you find out that your messages weren't getting through properly?

 

[Isla]

Kim - Thank you hunny, you SHOULD tell the doctor what it is like calling his office, it is HIS reputation on the line not the nurses and most all doctors take that very seriously. If you let him know the problems in his office he can correct them since he is the "boss."

My Geek Love, Creepy - Because I tried to ask him 3 times across 3 different nurses over the phone if he wanted to postpone the upper due to no nausea from taking steroids (i.e. can't find inflammation if I am on a drug FOR inflammation.) He asked me the morning of the procedure why I kept asking about the steroids because his nurses kept asking him if it was SAFE to take the steroids. It made him confused why I would keep calling asking that. So I explained to him that I knew it was safe but that it is illogical to look for inflammation causing nausea if I have no inflammation and no nausea due to the steroids. Then he was like OHHHH, ya that makes total sense. But since I had nausea that morning I decided to go ahead with it, plus me getting better on steroids is another good clue for him

>phew I talk too darn tootin much I really need to get a non-virtual social life<

 

[ladyB]

'a non-virtual social life'?....what would we do without you...lol

 

[Isla]

OMG New Saga Development

Hahaha thanks LadyB!

Ok so my last stint in the ER showed a paracardial cyst (a cyst in the sac around my heart.) I see the Cardiologist tomorrow, my GI seems to think that it may be *possible* that the nausea and pain might be caused by this cyst since it is 6cm above my upper gastric stuff. I will know more tomorrow.

My biopsies for my upper were negative.

When am I going to get a break IRL?? I much prefer my healthy virtual self!

 

[My Butt Hurts]

It's probably not a cyst.
It's probably Creepy Lurker and Drew, just growing in your heart - pitter-patter, pitter-patter. Technology can't usually pick up that type of growth.
(If it really is a cyst, though - good luck. At least you know and can get some relief. That sounds easily treatable for some reason.Well, not easily maybe - but treat it once and it's done.)

 

[Creepy Lurker]

It's probably not a cyst.
It's probably Creepy Lurker and Drew, just growing in your heart - pitter-patter, pitter-patter. Technology can't usually pick up that type of growth.
(If it really is a cyst, though - good luck. At least you know and can get some relief. That sounds easily treatable for some reason.Well, not easily maybe - but treat it once and it's done.)

So it *IS* possible to be too close to someones heart. Some antibiotics ought to get rid of me. :ylol2:

 

[Isla]

Ya apparently you guys are causing it to overflow so much that it had to grow a tiny little thing just to hold the extra love

 

[Isla]

So I saw my cardiologist yesterday and went through hours of testing!! He wants to wait six months and take another ct scan because most all of my ct scans stop below my diaphragm. Hence, he cannot tell if / how fast my heart cyst is growing. If it is growing it will have to be drained by needle aspiration.

I am going to get a second opinion as this form of cyst is very very rare. There has only been 1 study done on them with a total of 6 patients. So I see my primary in just over a week from now about my asthma so I will let him know then and get a referral to a cardiologist he would prefer.

 

[ladyB]

Wow!!
How are you emotonally through all of this?
I'll be here if you ned someone.
Hopefully you can gat a break and get in with one of the best cardiologists in your surrounding area.

My hugs and prayers are with you.