Help - GI appt tomorrow

[forum contributor]

Hey all. Thanks to everyone for listening to me complain for the last 2 months about not knowing what's going on with my body (stupid body). For those just joining us, I have been really sick for over a year w/Crohn's/UC stuff, but this is in addition to that stuff. I'm on Humira, Canasa, and Lialda for that.

Here are the additional things going on:

1. Not technically diagnosed anymore. Have had multiple diagnoses, but they're being indian givers.

2. Nausea and vomiting. Vomiting only bile, even after eating and/or taking pills. ONLY bile. Never the food or pills. A lot of it, too. Pretty violent.

3. Not able to digest fat. Steatorrhea (fat in diarrhea). Went on Creon because my body stopped being able to produce the pancreatic enzymes that are used to digest fat/carbs/protein.

4. Pain, pain, pain!!! Mostly in LRQ, upper abdomen between ribs, and next to belly button on right and left sides.

5. Bumps in upper abdomen keep appearing and disappearing.

6. Constantly tired. Not like I didn't get enough sleep. Like exhausted, I've been up for the past few days and I need rest.... zzzz..... could fall asleep anywhere kind of tired. I know I'm anemic, but I was put on iron pills months and months ago. Last blood test came back better.



Also, I'm going to bring up the following that I want checked out/done:

1. Pillcam
2. CBC (again)
3. Bile salt test
4. Labs to check pancreatic enzymes
5. Ultra sound to check pancreas and gallbladder
6. HIDA scan

Do anyone of you guys have anything I should add?

 

[drew_wymore]

That really sounds like your gall bladder. I had mine removed in 2002 because of pain in the RLQ area right about at the ribcage like you're describing. They never found stones but once they removed it they could visibly see it was inflamed for some unknown reason. It might be reasonable to ask for an exploratory to check it out.

 

[forum contributor]

That really sounds like your gall bladder. I had mine removed in 2002 because of pain in the RLQ area right about at the ribcage like you're describing. They never found stones but once they removed it they could visibly see it was inflamed for some unknown reason. It might be reasonable to ask for an exploratory to check it out.

Hey Drew - thanks for the idea. Were you having any vomiting or anything like that? I will DEFINITELY be asking about an exploratory!!!!!

 

[forum contributor]

Those are all great Ris - I'd especially want the HIDA and the ultrasound. I *really* hope they can not only figure this out for you - but figure out a way to fix it too!!

Me too, hun. Thanks. I'm really pushing hard now. I'm tired of mulling around and feeling like crap.

Ris has had enough!!!!

 

[drew_wymore]

Hey Drew - thanks for the idea. Were you having any vomiting or anything like that? I will DEFINITELY be asking about an exploratory!!!!!

Yes, every time I ate anything I would vomit. I also might be asking something too personal so feel free to just say so but an ex girlfriend of mine ended up having vomiting problems and acid problems related to ovarian cysts. So donno if you're having chickee problems but it's worth thinking about.

Habba syndrome as another idea since you still have your gall bladder.

 

[forum contributor]

Hey, nothing too personal anymore lol

I had ovarian cysts for a loooooong time when I was younger. Last time I had an ultra sound, there was only one and it wasn't big.

I looked up HS, and some of the symptoms fit.... I'll ask. Thanks!

 

[drew_wymore]

Hey, nothing too personal anymore lol

I had ovarian cysts for a loooooong time when I was younger. Last time I had an ultra sound, there was only one and it wasn't big.

I looked up HS, and some of the symptoms fit.... I'll ask. Thanks!

The lady who was featured on Mystery Diagnosis with it posted here a couple years ago after the episode aired and wrote that Dr Habba is very open to doing phone consults with other doctors to help with diagnosis, so that's something to keep in mind too.

Most of all good luck Ris. I know exactly how you feel to have to fight so damn hard for a diagnosis .. something, anything ..

 

[forum contributor]

Thanks, Drew. I appreciate it. I watch that show..... and think to myself how I and a bunch of others should either be on that or House so we can get figured out! (And yeah, you're one of them, too!)

 

[imisspopcorn]

Good luck with your appointment Ris.

 

[forum contributor]

Thanks, my little poppy seed

I took the things you suggested in other posts and put them together. I'm asking him those tomorrow.

I appreciate your help!

 

[beth]

Good luck Ris!

 

[forum contributor]

Thanks, Beth!

Hoping to find an answer tomorrow.... or at least get ready for tests for answers - anything at this point!

 

[beth]

Are you taking Josh? for moral support? might be worth it. Hubby has gone to all my appointments - we ganged up on the rheumy the other day like a tag team!

 

[forum contributor]

I would, but he has to work.... it's ok, I go to all of mine by myself. I don't mind. It gives me time to think...

 

[misscris]

Sorry Ris. I don't have much to add in ways of helping you out. I just wanted to say good luck, and I am keeping my fingers crossed that they get this figured out and help you move towards feeling better!!

 

[forum contributor]

Thank you, hun.

Believe me, I'm so grateful for you guys!

(Keep em crossed til I get an answer, will ya? LOL)

 

[misscris]

Thank you, hun.

Believe me, I'm so grateful for you guys!

(Keep em crossed til I get an answer, will ya? LOL)

Ok, I lied. My fingers are crossed in spirit. haha If they were REALLY crossed, I couldn't type!

 

[fenway1971]

hey Ris!
i have nothing to add other than go get'em. don't leave until you feel satisfied and make sure you write your entire list down - i often go and then forget to ask something.

will be thinking about you. keep us posted.

 

[forum contributor]

Thank you, Fen. I typed it all out and printed it for tomorrow.... and I'm making sure I don't leave until I've asked them all, he's answered them all, and we have planS. That's right, not only one plan - I'm tired of taking this one slow step at a time and getting nothing accomplished.


And you, Ms Cris..... keep those fingers figuratively crossed for me!

 

[misscris]

Thank you, Fen. I typed it all out and printed it for tomorrow.... and I'm making sure I don't leave until I've asked them all, he's answered them all, and we have planS. That's right, not only one plan - I'm tired of taking this one slow step at a time and getting nothing accomplished.


And you, Ms Cris..... keep those fingers figuratively crossed for me!

You got it babe!

Will it make it all better if I give you a few smooches too. :blush:

 

[forum contributor]

Well, duh!

 

[misscris]

Well in THAT case .....


SMOOCH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[Guest1]

It really DOES sound like gallbladder problems. I hope they find out what's causing your problems, Rissy! Make sure you give us an update asap!

 

[forum contributor]

Thanks, Cris :wub:


I will, V.... I'll post tomorrow when I get back. If nothing gets done tomorrow (like no tests get decided on, he doesn't send me for bloodwork, etc), I guess it's into Boston I go....

Thanks for your support, V

 

[misscris]

anytime Paddle.

 

[Guestly]

I can't add anything Ris, but good luck and I hope its a productive appointment.

I know I felt so much better once I actually had a definitive diagnosis... not physically - I still shart at random (!), but at least I had something mentally to deal with.

I hope it goes well.

Lishyloo

 

[forum contributor]

Thanks, Lishy.

I think that when I finally have a diagnosis, I can work on the problem, and then start to feel better, so I know what you mean.

 

[shazamataz]

Hey Ris, hope you can get some answers and start feeling better, it sucks doesn't it?

Perhaps you could ask for a full body transplant? I have been thinking of doing the same.

 

[forum contributor]

Oh how I wish they had those..... I'd be at the front of the line!

 

[Jerman]

Hey sweetie, I am so sorry I have not been keeping up with you-- had some ER time with one of my sons yesterday 7 hours fkn morons-later on that. I will be thinking of you tomorrow and sending strength and healthy thoughts your way. My Ma sent me a "How to say your rosary" only a few days before i was cleaning our room (houseboy) and found my gram's pair of rosaries.....I'm just saying maybe it will help.

I really hope that tomorrow is the start of the right direction for you. both you and your cool husband josh, deserve to be directed to a path of happiness and health.

Btw, if you are ever in a bind with an appt I may be able to help out with a little notice. You have been great friend to me and I will always be grateful for your support. Only a phone call or a pm away pal. Good Luck!!!!!

 

[forum contributor]

Oh jeez, Jer - is he ok?? Please update!

Thanks, buddy. You are a great friend.

 

[Rhonda]

Perhaps you could ask for a full body transplant?

Sign me up for that!

On a more serious note, a friend of mine needs gall bladder surgery and has every symptom you've described. Hope your doc visit goes well and you get everything you ask for!

 

[forum contributor]

Hi, Rhonda (love your pic in the other thread, btw).

Thanks for the support. This is seriously a PITA!!!

 

[misscris]

Oh geez Ris ... I didn't even think. My best friend has been going through stuff similiar to you for quite some time. I don't think she is having the fat absorbing thing, but not sure. She has been diagnosed with Gastreoparesis or however you spell it. Paralyzed stomach basically. She doesn't have any IBD issues, but has throwing up issues, pain and such. They tested her Gall bladder like crazy and it was fine. So if your gall bladder is fine, you might want to ask them to look into doing gastric emptying studies.

 

[forum contributor]

Oops, forgot to add that to tests I've already had done. Sorry!

Yup, I've had that stupid thing done. Was in there for hours and hours... said everything was fine.

But thanks for the idea!!

 

[misscris]

Well that's good though. I mean good that you had it done and it was all fine. I know you didn't get your answers, but still good I guess. I don't know. I wanna hug you and just zap everything away.

 

[forum contributor]

Thank you. I could use a hug or fifty right about now.

Trying to stay positive about tomorrow's appt. Trying being the key word.

 

[misscris]

huuuugggsssssssss

 

[forum contributor]

Spanks, Busty

 

[misscris]

woo. .. spanks. I like spa..... nevermind. not lounge.

You're welcome Paddle.

 

[forum contributor]

 

[drew_wymore]

Get angry if you need to Ris. And don't feel dumb for asking questions. If I hadn't asked for the IG tests even though the doc gave me a look like "wtf" .. they would have never found my problems.

Also Google is your friend, just keep typing in your symptoms. I found the IG stuff by typing in "what causes intestinal inflammation" one night, no joke.

 

[NatalieMT]

I don't really have a lot to add because I don't have much knowledge of your problem, Ris. But I really hope the appointment works out well for you and you get the outcome that you want! Sending you lots of love and luck!

 

[forum contributor]

I don't really have a lot to add because I don't have much knowledge of your problem, Ris. But I really hope the appointment works out well for you and you get the outcome that you want! Sending you lots of love and luck!

Thanks, sweetie!

 

[forum contributor]

Get angry if you need to Ris. And don't feel dumb for asking questions. If I hadn't asked for the IG tests even though the doc gave me a look like "wtf" .. they would have never found my problems.

Also Google is your friend, just keep typing in your symptoms. I found the IG stuff by typing in "what causes intestinal inflammation" one night, no joke.

Yeah, I've had enough of this. I'm tired of never feeling good. He's about to get an earful today!

 

[forum contributor]

Hey girl - I got sidetracked when I came back on to say my good night last night. I was coming down specifically to tell you GOOD LUCK for today and I just spaced it after the other thing. I'm SORRY!!!

I hope you have a VERY productive appointment today and that they can start the process of figuring things out for you, for real, this time!! Let us know!

Don't be sorry

Thanks..... I was ready to give up last week. The support from you guys and Josh honestly keeps me going, trying to find an answer. Otherwise, I would just say the hell with it.

 

[Rhonda]

Don't give up! *HUGS*

 

[forum contributor]

Thank you, hun. And BTW - I love your avatar

 

[forum contributor]

Oh goody.

Just got home from the dr. Having a HIDA scan on 11/12. Took me off Humira, Lialda, and iron. After feeling around my stomach and talking w/him, he does seem to think gallbladder.

He's not happy w/the 5-pound weight loss since last week.

Gave me superhero Ensure since I'm not able to keep much down/not able to eat much.

 

[Rhonda]

What was the reason for taking you off of the drugs? Hm.. yummy Ensure. Lucky you!

 

[forum contributor]

That is going to be just so amazing if it is your gallbladder! If they remove it - poof - do they think most of your symptoms will go?

Hoping so.... everything is pointing to gallbladder right now.

Then we would just have to find out if I have Crohn's or UC :ybatty:

 

[imisspopcorn]

I'm glad he listened to you. Good luck.

 

[forum contributor]

Thanks, Carrie.

And I definitely appreciated the suggestion of the HIDA scan!

 

[My Butt Hurts]

Oh goody.

Just got home from the dr. Having a HIDA scan on 11/12. Took me off Humira, Lialda, and iron. After feeling around my stomach and talking w/him, he does seem to think gallbladder.

He's not happy w/the 5-pound weight loss since last week.

Gave me superhero Ensure since I'm not able to keep much down/not able to eat much.

At least you have SOMEthing to go on now.
So - what is the next step? Hope they can figure it out quickly for you.

 

[Guestly]

Yey! Well done you! I had my appt today and got totally flustered - forgot to ask all the questions I had stored up!! I must make a list next time!

Lets hope you get somewhere soon!

Lishyloo

 

[Guest1]

I'm SO glad to hear that your doc listened to you, love! Hoping for the best for you.

 

[drew_wymore]

Hoping so.... everything is pointing to gallbladder right now.

Then we would just have to find out if I have Crohn's or UC :ybatty:

ika:


YAY

 

[fenway1971]

High 5'ers, Ris. Let us know how the scan goes.

 

[shazamataz]

Yay for progress of sorts Ris!!!!

 

[Jerman]

Good news Ris, I am so glad that it looks like you will finally get some progress. way to self-advocate pal! You deserve to get through this crap soon, keep at it ya lil tuffy.