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Undiagnosed, For Now......

I posted this over on the "Undiagnosed Club," but figured I should come to the "Your Story" part too..

Hey there everyone!

I'm Kate, 29 years old and (hopefully) finally starting on the right track to getting a diagnosis. My journey started when I was 16, and routinely hospitalized for severe right sided abdominal pain. Doctors then did an upper GI study with barium swallow, which hit a closed-off part of my intestine and forced me to have an emergency bowel resection, gall bladder removal, and appendix removal. Since then, I've been in and out of the hospital for the same right-sided abdominal pain and never gotten an answer. I've heard everything from kidney infections to adhesions to pain with ovulation to the most popular: "we can't find anything wrong, so it must be in your head." Once the severe pain passed, usually about a week, I was always left with a level of background pain but since the symptoms had "improved," no doctor ever followed up further.

Fast forward to this year, and I got a vaginal infection at the beginning of this month and it's been a quick downward spiral ever since then. I've had constant abdominal pain, unbelievable fatigue, bloody d, low grade fevers, night sweats, rapid weight loss........I'm barely functioning right now. Fortunately (I think?) my insurance changed at the beginning of this year so I got a new GP due to that. He right away suspected a bowel problem, and put me on meds for IBS. Of course they did nothing, but led me to research it.

One website I came across in my research was about the differences between IBS and IBD..........when I read about the symptoms of Crohn's, I fit just about every single one. It was seriously like a light bulb went on and I finally had some reassurance, even if only via Google, that the last 13 years have NOT been all in my head. I suppose this is where the tough part comes in, getting a doctor to be able to make the diagnosis so I can get into some sort of remission.

My GP has referred me to a GI who, fortunately, specializes in IBD and Crohn's. So my main question is, how do I make the most of my appointment and get him to listen to everything? I think I'm finally on the right track, hopefully with the right doctors, and maybe I'll finally get off this damn carousel!
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum. I am pleased to hear that you are no longer seeing the doc that removed part of your bowel and then told you it was all in your head :ywow: I would say that you need to write everything down that you have experienced previously and now so you don't forget anything and let the GI know all the things you have tried thus far whether it be diet or meds. Take your time and do not be rushed - be firm and say you want to get this sorted.

I hope you can get some answers soon, please keep us updated on how you get on.

AB
xx
 

David

Co-Founder
Location
Naples, Florida
Greetings and a hearty welcome to you :) I'm sorry you've been going through this for so long without a proper diagnosis. Educate the heck out of yourself between now and the time you go into see your GI so you can advocate for yourself. Ask as many questions of us as you need to until you feel comfortable that you will get the care that you deserve. Most GIs are great so you should be fine, but it's good to have that knowledge in your back pocket just in case.

We're here for you, let us know what we can do to help.
 
Hi Kate. I have been where you are now. I was undiagnosed for years, then misdiagnosed. Before your GI appointment learn all you can about Crohns and UC. The more you know, the better advocate you can be for yourself. Tell your doctor everything that you have been through. Document it.If you can, I would get the records of the time of your resection. (I can't believe you weren't diagnosed then!)

Ask questions of us.we can help you. Good luck.
 
Hi have you anyone to take with you to the appointment? My mum came to all my appointments and she was like a rotweiller, being medical herself she asked all the right questions. It's unbelieveable how you forget what you want to ask during your consultation so definitely have it written down. Put him on the spot if he says it's IBS ask for written research that says bloody diarrhea, weight loss and fevers are the symptoms...never mind a bowel resection!!!!! It simply won't exist.

Your in charge of your own body your GI is there to assist you and write prescriptions. If not satisfied get a new one everyone is entitled to a second opinion. Honestly though with your symptoms it won't be a problem so try not to worry it's only cos you've had a crap doc until now. Goodluck and keep us posted.
 
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