Crohn's Disease Forum » Support Forum » Undiagnosed Club » Finally on the Right Track?

04-26-2012, 10:28 AM   #1
Join Date: Apr 2012
Location: Pennsylvania

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Finally on the Right Track?

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!
04-26-2012, 02:47 PM   #2
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Josephine's Avatar
Join Date: Jan 2011
Location: Middlesbrough

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Write list of questions and strange effect of what you think might link. Good luck.
Acid Reflux for 15 years med

Sacroiliitis and add to grew list auto immune diseases.

Now on Lansprazole 15 mg And Gavin son 5mg-10mg 3a day.

Crohns from Oct 2007
Domperidone 10 mg -20 mg, Mebeverine 135 mg,
3 a day.
Balsalazide 750 mg 3 X3 a day on going.
Bone protection.

Azathioprine is not working, still waiting to find out what next. Still on low dosage Prednisolone

Mesalamine Enema

No Wheat

English my native language and have characterizes of dyslexia.
04-27-2012, 12:29 PM   #3
Join Date: Jul 2011
Location: atlanta, Georgia
I'm just thinking -- when they do surgery they would have also done pathology on the parts they they removed, and this should have some evidence of Crohn's. Is there any chance that you could get those records to bring to your GI appointment? They might be helpful in giving your new doctor a complete picture. I definitely second Joesphine's rec to write things down beforehand, especially the whole chronology of your symptoms and treatments.

Also, if you're near Philly, there's a CCFA education day at Thomas Jefferson this Sunday. It might be helpful even though you're undiagnosed right now.
Crohn's since 1998
Resection in 2003 due to a pill cam gone wrong!
6-mp for 13 years, now on Imuran 125 mg, Pred, and Remicade...counting down to just Remi and no more pills!!
04-27-2012, 03:10 PM   #4
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jetsma's Avatar
Join Date: Apr 2012
Location: United Kingdom
I wrote a chronological symptom list and all the different drs diagnoses over the past 5 years. I included even the smallest seemingly unimportant thing and handed it to the gastrodoc as soon as I went in. I knew that way I wouldn't forget anything important. Have you had a colonoscopy? It may be worth asking for a more recent one with biopsies.

It's also worth just asking straight out if it could be Crohns or Ulcerative Colitis (adding the latter just so they feel the diagnosis is left with them) and tell them why you dont think its IBS.

Good luck
Biopsy said "results consistent with inflammatory bowel disease" - thats the extent of my knowledge so far
04-27-2012, 04:09 PM   #5
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Cat-a-Tonic's Avatar
Join Date: May 2010
Location: Madison, Wisconsin

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Hi Estrella and welcome. I concur with the others who have said to write everything down. When I go to my GI, I usually bring 3 lists with me:

A list of all my symptoms (even ones that don't seem related to my digestive issues - if you have anything like joint pain, eye pain, skin issues, etc - write them down too!)

A list of all the medications, vitamins and supplements I currently take (certain things can interact with each other, this is even true of vitamins and supplements)

And a list of all my questions for the doctor.

I also bring a blank piece of paper and a pen so that I can take notes. My mind tends to go blank when I'm in the doctor's office, so having everything written down helps me remember what I want to talk to the doctor about and also remember everything my doctor told me.

Good luck with your new GI! Don't expect to get diagnosed at your first appointment, but hopefully you can get lots of info and some diagnostic tests scheduled too.
04-30-2012, 08:15 PM   #6
Join Date: Apr 2012
Location: Pennsylvania

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Ugh, what a terrible weekend this was!!! Had major abdominal pain all weekend long, which ended in a trip to the ER last night. Good lord, was that ever a mistake. My doctor was the biggest goon I've seen in a long time. He looks at my mile-long hospital record and freaks out. Sends me for a CT scan which was (of course) normal. Then after he tries to discharge me using another patient's diagnosis, he gets MY chart and sends me home because, "your CT was normal, so there's nothing majorly wrong with you. Here's some Percocet, see your family doctor if you don't feel better. But you should, because you're fine." My GI appointment isn't for another 2 weeks yet! Although they did put me on a call-in list if there happens to be a cancellation before then.

And it seems like everyone is yelling at me for being sick. Called in to work, got yelled at by my boss. Told my husband that I have to wait another 2 weeks before I can start getting some answers and hopefully feel slightly better, and I get grief for that too. On top of my ER experience last night, I just feel like a lazy bum. Why do people think that because you don't have a name for what's wrong with you or a magic pill to instantly fix it, you must not feel that badly?!?! Aargh!!

Ahhh, just wanted to vent a little bit. Today sucks.
04-30-2012, 11:44 PM   #7
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Join Date: Feb 2012
Location: Austin, Texas

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Write your medical history down. Wait a day and reread. Add little notes.
That way you give everything in chronological order. Meds- procedures etc.

That way you can stay in track and if he asks you questions you can get back on track. Expect that. He will ask and its so easy to lose your train of thought!

Good luck!


Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!

Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


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