Had my endoscopy today

[Cat-a-Tonic]

and I'm still quite groggy from it - apparently they gave me way more sedation than they had given me for my colonoscopy (BTW, apologies if nothing makes sense or for spelling errors - I am still kind of groggy and it's hard for me to focus on the words on the computer screen). But I think I recall a nurse or someone telling me that everything looked normal on my endoscopy. Of course it did, because that's what happens with me. I get ill, they run tests, the tests say I'm normal. Repeat. Still waiting on my biopsy results of course, but I'm sure those'll be normal too (if so, at least then I get to cross celiac off teh list of possibles).

So I'm crying and pissed off and going through the usual emotions of my own little pity party. Not looking for pity here, just had to vent. I did have a great nurse for my scope today, the doctor was late so I chatted with the nurse, and she's a lot like me. She said she suspects she has Addison's disease (for thsose who don't know me, I was tested for Addison's because my GI thought maybe that would explain my symptoms, and people with Addison's respond really well to pred just liek IBD patients do). So the nurse was asking about my ACTH (Addison's) test, and I told her aobut how I'm still not sure about the results and how I'd like a third opinion on them from an endocrinologist. She said she can't even take teh ACTH test yet because she's been on pred for a year and she isn't able to wean off of it yet (you have to be off pred in order to hae the ACTH test). She was a great nurse and very sympathetic - it's not often you come across medical people like that. I wish she were a doctor, I'd have her become my GI or primary care doc in a heartbeat!

Anyway, I'm probably rambling because I'm still goofy from the sedation, but I wanted to share with everyone that I had my scope and don't remember a thing from it but it's normal, again. I'll post an update when I get the biopsy results back.

 

[Jennifer]

Having normal results is quite common and really frustrating I know. My last scope was normal even though my symptoms are increasing but even the best GI doc can miss important areas or it could be in the small intestine where no one can see or it could be Addison's but I don't know what that is and now have something new to look up.

Take care and rest. Keep us posted.

 

[afman]

sounds like me everything come back normal excpet my blood work.

 

[Cat-a-Tonic]

Crabby: Addison's is basically adrenal insufficiency, the adrenal glands don't produce enough cortisol on their own - what a lot of people experience when tapering off of pred too quickly. You experience things like low blood pressure, low sodium, weird electrolyte imbalances, and so on. You've probably looked it up by now but Addison's can also mimic IBD symptoms - diarrhea, nausea, vomiting, abdominal pain, weight loss, etc. It responds to pred, even in low doses, and when I first took pred I was only on 10 mg but I still felt great. And since it's just an insufficiency of the adrenal glands on the kidneys, there's no scarring or thickening or anything like that to show up on any of the various IBD tests. So long story short, my GI thought I might have Addison's because I respond well to pred even in low doses, and because everything (blood tests, CT scan, Colonoscopy, and now endoscopy) have come back normal even though I have IBD-like symptoms.

If you've looked a lot into it and you've looked up the ACTH test, I'll tell you about those results. Apparently normal baseline cortisol levels are between 20 and 30 in healthy people, and during the ACTH test the cortisol level is supposed to double or triple in one hour. My baseline was 20, and after one hour my cortisol was at 28. So it did rise, but not very much, which is why I think I need a second opinion from an endocrinologist (both my GI and GP thought my ACTH test results were normal, but neither of them have ever dealt with that test before, so how much can they really know?)

Afman: Even my blood work is normal - the only odd thing is that my sodium levels are usually low. Which could be from IBD, me not absorbing enough sodium in damaged intestines, or it could be from Addison's like I mentioned to Crabby. So yeah, all I really know is that I have low sodium and that I respond to pred. It really is frustrating!

 

[Dexky]

Wow Cat, who'd have guessed? Sorry you still don't have any answers. Hopefully, something will show up in the biopsies. There's nothing else to say but hang in there and I wish you the best!!!

 

[DustyKat]

Hey Cat,

Awwww that just sucks, again. I so hope something turns up soon so you can get back on your feet again. I know the frustration as we went through the same thing with Roo and it broke my heart to watch her suffer with no answers. We are here for you mate and always thinking about you........

:hug::hug::hug::hug::hug::hug::hug::hug:

Take care,
Dusty

 

[bushydougie]

Hey Cat,
I am glad the procedure went well even if they didn't find anything. When I saw my GI last week he didn't seem at all surprised that nothing was found with my endoscopy. I think the only thing they were really looking for was if I was coeliac.
When are you seeing your GI again?
I hope that you are doing ok. Hopefully the GI will suggest other tests to look at your small bowel, as I'm going to have. It is strange how similar our paths are still progressing.
Please try and stay positive. At least you can tell your mum you're not coeliac now
Sam
x

 

[Astra]

Aw Cat

no wonder you're venting, so bloody frustrating!
have they mentioned a sigmoidoscopy? This is how they found mine in the terminal ileum.
Thinking about you, hope you're ok?
xxxxxx

 

[Cat-a-Tonic]

Mark: Thanks, I doubt anything will show up in the biopsies. I talked with my GI's office today and they said it takes about a week for the biopsy results. So I'll post an update when I get those results.

Dusty: Thank you. How long did it take Roo to get diagnosed? It's been nearly a year for me, I got suddenly ill in October 2009 and haven't been the same since. I am really, really hoping to get diagnosed before one year but at this point it's not looking like that will happen.

Sam: I won't know for sure that it's not celiac until I get the biopsy results. So I have to wait one more week to tell my mother I'm not celiac. She's actually coming to visit this weekend so I hope to have the biopsy results back by then! I'm going to see my GI for a follow-up consultation on the 26th, so I should definitely have the biopsy results back by then, and then my GI and I can figure out what to do next. My GI told me before the scope yesterday that he doesn't think it's Addison's or IBD and he honestly doesn't know what I've got. Well, I've got something that has symptoms like IBD and it responds to pred - there's not much else it could be! I can't think of anything besides IBD and Addison's that has gastrointestinal symptoms and responds to pred. I am getting frustrated with him, it might be time to look for a new GI. We'll see how the appointment goes on the 26th and then I'll decide whether to stick with him or not.

Joan: I haven't had a sigmoidoscopy, but I did have a colonoscopy back in April. I assume the colonoscopy sees pretty much what the sigmoidoscopy sees? My colonoscopy was normal and the biopsies from it were normal too. I haven't yet had pill cam so I'm wondering if I should ask for that next, since it'll see the small intestine.

 

[gypsigirl28]

aw cat I am sorry that you got the same old answers. I am not surprised at all and truly wish it did not happen to you again. I know the feeling of frustration, Hang in there and keep pushing forward..
We are thinking about you

 

[DustyKat]

Hey Cat,

Dusty: Thank you. How long did it take Roo to get diagnosed? It's been nearly a year for me, I got suddenly ill in October 2009 and haven't been the same since. I am really, really hoping to get diagnosed before one year but at this point it's not looking like that will happen.

If memory serves me correctly it was about 18 months from the time we noticed symptoms. I hate to have to say it to you but Roo received her dignosis on the operating table. :eek2:

Dusty.

 

[crohnicaly stinky]

Cat I'm waiting for you to post your results. I hope they find something that they can start to treat. My symptoms used to respond positively to antihistamines, claritan to be exact. Because of this I was googling antihistamines and IBD etc. and found a disease called mastocytic enterocoliitis. Not to say that is what you have, because it is not what I have. But nobody knows why the claritan worked for me for about 7 years, the doctors all shrug at it. So these things can be complicated and so I encourage to use google to try and find some ideas to run by your doctor.

Oh and if it turns out not to be IBD I'll be happy for you, as long as it not something worse!, but in any case you must stick around here now that we gotten to know you, we won't accept your leaving us just because you've got some different disease. lol! Astra/Joan tried to skip out and join the bruxers that was nixed pretty quick.

p.s. btw do call and ask them about the results, just to keep you in their minds. I actually threw a fit to get mine because I was wasting away in a flare and they kept saying week to ten days...blah blah blah. Anyway when I got a copy of them I realized the pathologist had signed his report about an hour after my colonoscopy!

Take care!

 

[Jerman]

Hiya Cat, so sorry that you are hurting, between the stress both before and after, the prep and then the damn test it just wears you out!

I have been scoped, poked & prodded so many times that my bum whistles when i touch my toes.

Hang in there dear. ((((((Big Jerman Hugs))))))))

 

[Cat-a-Tonic]

Stinky: Thanks, I don't think I'm going anywhere even if I do get diagnosed with something other than IBD. I'll try calling my GI tomorrow and see if they've got the biopsy results yet. I've got a follow-up with my GI on the 26th so I'll for sure find out the results then if I don't get them sooner. I'm not expecting the biopsies to find IBD, but I would like them to NOT show celiac so at least I can cross that off the list of potential illnesses. Interesting about the Claritin, too, I will have to try that. I do have some seasonal allergies so sometimes I take Zyrtec, but only just before bedtime because it makes me really drowsy (is Claritin non-drowsy?). I haven't noticed any improvement in my symptoms when I take Zyrtec, but I'll pick up some Claritin the next time I'm at the pharmacy just to be sure.

Jerman: I know you and I are in similar situations, both of us being tested and tested but it always comes back normal and no diagnosis. I laughed about your bum whistle, I don't think mine would whistle at all right now since I've been dealing with a nasty hemorrhoid for over a week. Thanks for your kind words, I hope we both get answers soon!

 

[Jerman]

Me too Cat, Me too.:hug:

 

[Cat-a-Tonic]

Update - I just got off the phone with my GI's office, and they said the biopsies from my endoscopy came back, and they are all totally normal. Which is actually good news, because that means it's definitely not celiac disease! A few of you know about this already, but my mother is freakishly obsessed with celiac and has gone gluten-free herself even though she has NO symptoms whatsoever. It's a long story, but anyway, she's been bugging me day and night because she is positive I have celiac and that it's the cause of all my problems (even though pasta and bread are some of my "safe" foods, and even though I respond to pred) and she thinks I should give up gluten forever. Well, now I get to tell her that I don't have celiac and that I'm going to eat a big piece of bread and some lovely pasta for dinner!

So, I'm still not diagnosed, what else is new. At least I can cross celiac off the list of possibles. I see my GI next week for a consultation so I will find out then what the next test should be and maybe I can even go back on pred! Looking forward to that if it happens.

 

[Silvermoon]

welll "yay" and "boo" (((((((((((((((cat))))))))))) - although I am so very happy we have ruled out another disease.... the "not knowing" is sometimes so much worse, cause you are in pain and no one will do anything about it!!! grrr!

I guess, though, on another good note, whatever it is (hopefully) won't be diagnosed on the surgical table, as it looks like your bowels are fairly clean.... It would jsut be nice to get a damn diagnosis BEFORE we get tot hat part, eh?

 

[Cat-a-Tonic]

Thanks Silver. Yes, the not knowing has been the worst part so far, but I'm trying not to focus on that today. I've actually had quite a good day - besides not having celiac, I also had my mid-year performance review at work, and it went really well! So I'm actually feeling pretty happy right now.

I'll focus on the not knowing again when I see my GI next week. At my last consultation with him, he said that after the endoscopy he'd like me to have either an x-ray with barium contrast or an MRI. Bring it on! I had a CT with barium already, and I actually kind of liked the barium. It tasted mostly like lemonade, and I had been having an episode of low blood pressure and I felt awful. After drinking the barium, my blood pressure went back up (not sure what was in the barium that did that) and I felt much better! So anything with barium contrast is all right with me.

 

[Dexky]

Normal- of course!! It's hard to imagine that being bad news but I guess it is if you feel like crap and they can't find out why!! Well, enjoy your pasta and breadsticks Cat!! Till the next test!! Hang in there!!

 

[Cat-a-Tonic]

Thanks - I'm more than hanging in there, I'm doing pretty good now that I know it's not celiac. Normal is acceptable as long as I get to cross something off of the list.