• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Greetings

I just switched GI's & pretty much had to go back to square 1 with all the tests.

I was scoped from both directions early December & had the upper gi/small bowel bit about a month ago, & would like some help regarding the list of questions for my follow up next week.

I have had a really bad time with my belly for most of my life & nobody can give me an answer.
I have memories of being doubled with cramps, having sudden bouts of nausea & or just turning inside out with the runs for no reason since my early teens.

I had the Gastro from hell about 8 years ago & he scoped me from both directions too.
the endo showed an area of inflamation about the size of a saucer & his response was it's not an ulcer.

My response to him was that Dr.'s like him bury their mistakes.
The next day, he called & booked a hida test, which shows my gallbladder function @ less than 7%.

He told me to ring my surgeon ( I don't have one on speed dial ), so I contacted my Primary, who flipped his lid & said no way.

I have had several bouts of what they say is colitis over the years & my Primary said if they yank the gallbladder I will have a flare.

This has happened @ least 6 times in my life & I would like a straight answer.

Now I have a whole new set of symptoms.
I've lost more than 1/3 of my body weight since July, have pain in LRQ, feel for the world like my tail bone is being pulled out , bloating, gas ( sometimes so bad the cat leaves the room ) & hardly have the energy to drag myself around.

I seem to alternate between the runs & being constipated.
I have noticed that fiber, fat & dairy seem to make me feel the worst, so I sometimes go a few days on clear liquids to give my tummy a rest.

Would there be any evidence of the inflamation from 8 years ago ?
Prednisone , lomotil & metamucil helped put the colitis on the back burner last time, but these symptoms are entirely different.

The only med. I'm on right now is Aciphex & it barely takes the edge off.

I would like some help in compiling a list of questions for my new GI & really appreciate the input.

Thanks in advance,
Nance
 
wow, you've certainly had a rough time, for a long time! i'm so sorry you've had to suffer like this, with no real answers or solutions..

glad to hear you're seeing a new GI - a fresh start - i'm tempted to say print out your post above and take it with you.. it says it all!

inflammation from the past 'can' still be visible under scopes because, if of an ulcerative nature, they tend to create scar tissue, but depending on your healing and/or meds you've had, that could be too minute to see or even be indicative of anything now... it's the current symptoms that will show up somewhere, hopefully, and results of other tests which i'm sure your new GI will organise for you.

the best advice i can give you is write everything down that you've ever suffered health-wise, and what you're going through now..

good luck, and please let us know how it goes, and welcome to the forum! :)
 
thanks for the welcome.

I hand delivered all my medical records dating back to 1974 to my new GI & was pleasantly surprised to discover that he actually had the courtesy to read them before my first visit.

This has happened so many times that I have clothing in all sizes depending upon what state my tummy is in.

He told me he doesn't think it's the gallbladder as the symptoms are wrong.

I accept partial responsibility for letting this go for so long, but sometimes I get so frustrated with " we can't find anything ", that I just throw my hands up in disgust & deal with it as best I can.
 

Cat-a-Tonic

Super Moderator
Hi Nance and welcome. I'm also undiagnosed so I understand the frustration - every test I've had has come back normal, too. (Oh, they did find one thing, which is that I have low sodium levels - I was literally told "eat a bag of potato chips and you'll be fine".) It really sucks to be in limbo with these symptoms, I really feel for you and I hope you get some answers soon from your new GI. That's promising that he read your medical records, I hope he can get you some answers and some relief! Let us know how it goes.
 

Astra

Moderator
Hi Nance
and welcome

I can empathise too! I now have a dx, but had to fight with the quacks for 15 years!
Hope the new GI puts his money where his mouth is and starts investigating, starting with repeating the scopes.
Keep persisting, stay assertive, take no crap off them and stay determined, you'll get there in the end!
Good luck
Joan xxx
 
Top