First round of biopsies...results August 4th--that's a long time.

[rbnyc]

He had to take loads of tissue from my esophagus for biopsy. He'll discuss the endoscopy with me on the 4th also. Pretty much all he said as I was coming to was "Everything has gotten much worse."

Then the camera pill. Then a biopsy of some tissue in my colon---and depending on what we see in the camera pill, maybe the small intestine.

So we're talking months of testing and waiting. This is just the first round.

Still trying not to speculate. All I know for sure is that I have GERD, a hiatal hernia, 3 ulcers in my esophagus, an esophageal ring, a disease indicator for the small intestine, a deformed valve at the ilium (sp?) and an ulcer in my colon.

Seems like there must be something larger at work to have all these problems throughout my whole digestive system.

Hate waiting for test results.... Hate waiting for test results.... Hate waiting for test results.... Hate waiting for test results....

So, la, la, la, la, la.... that's it. Just want to know what's wrong so we can make a plan and I can get better.

Then, could I possibly have a break?

Well, just thought I'd check in.

[Susang]

1. I'm sorry to hear that you haven't been feeling good

I'll keep my fingers crossed for some positive test results. You could definitely use some good news. :pals:

[rbnyc]

5. How about some negative results.

;-)

But I know what you mean. Thanks so much!

:loveya:

[Susang]

10. Whoops!

You never know with all these different tests. Sometimes positive is negative, negative is positive, up is down, high is low, black is white; I get so confused! x(

Of course I meant Good Luck! :hug:

[REP]

2. Yikes

Sounds like ulcerative colitis or Crohn's, both of which are not pleasant (I have mild Crohn's limited to the terminal ilieum - pretty small potatoes). I hope they find an answer so they can start your treatment - if it is IBD, there are plenty of effective treatments (and if it's somethng else, I'm sure there's a lot of effective treatments for that too).

[rbnyc]

6. 8 days...

8 more days and I'll have these results...then we're about a third of the way through my digestive system.

Thanks for your post. I'm sure whatever is going on is treatable too. (Well, I hope so at least.) So this is all good. I'm on my way to doing what I need to do...I'd have to start sometime, and there would be waiting involved no matter when I started, so it might as well be now.

Thanks again.

[mopinko]

3. it does sound like crohn's

which should be dx-able from the biopsy. my daughter has it, as do some friends. although it is a nasty disease, it is highly treatable. back in the day, all they could do is hack out the bad chunks, which didn't really do anything but buy time. these days, there are a lot of treatments out there. you will probably be started with a course of prednisone, which should shut down the inflammation. pentasa is an engineered aspirin type drug that stays in the digestive system, and is the front line maintenance drug. if those things don't work, there is always immune suppressing drugs, which will shut it down. there are risks, but that does work.
there is a LOT of research going on out there on autoimmune diseases. in fact, HuMabs are in trials now for crohns. these are antibodies to the antibodies that cause both crohns and rheumatoid arthritis. these look very promising, with high effectiveness, and low side effects.
:hugh: for the wait. that part drives me nuts. waiting, waiting, waiting. why don't the know that that is bad for you?

[rbnyc]

4. Interesting...

...because recently I've had some infections that my GP says he usually only sees in AIDS patients. (I'm HIV-, and have been tested many times, and recently. Thank God.) My GP said I should take a multi vitamin and try to get more sleep, and reduce stress. (So funny!) And of course he was glad I was going back to my GI guy. But if I have some autoimmune disease, that would fit in with the recent infections...of course, I'm trying not to speculate!

Anyway, thanks for the support. I really appreciate it.

8 days...

[mopinko]

7. autoimmune is not immune impaired

they are not the same thing. although i can see how having open wounds in your gi tract could lead to some odd infections, afaik, people with autoimmune diseases are not more prone to infections. these diseases are erroneous over activity of certain parts of the immune system. it does not affect the ability to fight infections.
chron's, unfortunately, does not have a diagnostic blood test. but it will be obvious in the biopsies, if that is waht it is.

[rbnyc]

8. Thanks!

I didn't know that.

:hi:

[mopinko]

9. yeah, i know a lot of stuff i never

wanted to learn!

[REP]

11. Actually, Autoimmune Can Mean Immunocompromised

I have a long boring list of autoimmune or immune-mediated diseases, including the Crohn's and the kidney disease (et boring cetera) and at least in diseases such as mine, is *does* damage the immune system and compromises it.

Stress also wears down the immune system, especially long-term stress.

Oh, and if it does turn out to be IBD, be sure to ask about low-residue diets in addition to whatever medical therapy is recommended. As I mentioned, my Crohn's is piddly mild (not that anyone could tell from the way I complain about it - it feels like my appendix is about to burst 24/7, whine whine whine) and I can't take NSAIDs due to my kidney failure or steroids for very long, etc, but the low-residue plan plus an assload (so to speak) of Lomotil makes a big difference for me - and low-residue is pretty easy for non-vegetarians.

Continuing good wishes for the results to be "oh, it turns out we can CURE this ..."

[rbnyc]

12. Thanks.

I am so wanting to come back here with good news. But no matter what, I'll deal. Look at everyone here dealing with so much. Amazing.

[REP]

13. But Only *You* Have To Deal With What's Happening To *You*

There's no Sickness Competition here (that I know of). You're the one who has to deal with how you feel, and only you know how that is. I'm willing to take your word that it sucks, no matter what the final diagnosis is.

Me, I deal by complaining. The cats are used to it by now.

[rbnyc]

14. True and very important.

It's just like grieving. No one can tell you how to do it or how long it should take.

Of course, for most of us, it's easier to give other people the room they need to deal with things, but we expect ourselves to just gut-check and power through.

Complaining is excellent. I'm glad we're allowed. I think I'll join you.

Puked up about a pint of bile this morning--felt like my stomach was turning inside out. Now here I am at work because if I stayed home every time I puked up a pint of bile, I'd be unemployed.

Ahhh...that's better.

:)

[REP]

15. Barfing Is *The* **Worst**

I know most people love heaving, but I really, really hate it so you have my complete sympathy. Yakking bile is especially unfun (not that that there's a good thing to hurl).

And another really sucky thing about GI stuff, besides what it does? It's not like a broken leg or even an appendectomy, which gets instant sympathy and some deserved slack from coworkers. GI stuff isn't really discussable, and people feel free to snark about "going to the bathroom ... again?" If you have this kind of work environment, I hope you can demonstrate why you're excusing yourself ... all over the shoes of who ever is asking.

[rbnyc]

16. My appointment was moved. I get results tomorrow!

I'll be back.

:hi:

[rbnyc]

17. updated in The Lounge

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=105&topic_id=3779809&mesg_id=3779809

[REP]

18. Well, I'm Glad There was *Some* Good News

I'm glad that they could at least rule out cancer; I hope that was at least some relief for you. Not enough, I'm sure. Sorry your husband's being a jerk. My ex (I've never married, thanks be) was like that - any time I was in the hospital, he thought it was a good time to go on a date. With someone else. That's why he's the ex (among other reasons to numerous to mention).

I hope they find something that will at least control your symptoms until they can diagnose you.