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Crohn's Disease Forum » Your Story » My Undiagnosed Story!


07-02-2012, 12:22 PM   #1
Lydia_Marsh
New Member
 
Join Date: Jun 2012
Location: Hagerstown, Maryland
My Undiagnosed Story!

Hi everyone!

This is my first time posting and I am still trying to learn how to use the forum, but I think this is a good starting point...

I am 26 years old (27 in 6 days!) and have been documenting symptoms since 6/5, although they were going on for several weeks before then. At first I noticed a strange pain under my left rib cage- I thought maybe it was a gas bubble and that I needed to burp. As the days went by and the feeling persisted, I started to think, well what the heck? This was not a debilitating pain- it was more discomfort, with intermittent 'twinges' of a pinching, pulling pain. I then began to have moderate diarrhea- the kind where I was in traffic heading to work in the morning wondering if I would make it to the office bathroom quick enough, with sweat pouring out and frustration at the brake lights in front of me. After a few days of diarrhea I had several days of constipation- which is incredibly frustrating to me, as I have been a normal, frequent (3-4x a day) pooper. When I would have a bowel movement, I never felt the relief in my abdomen that I hoped I would, and the dull pinching under my left rib started to progress down in the lower left quadrant of my abdomen, then later across the front of my abdomen and into my right side, often accompanied with awful back pain. I started feeling like I was being attacked from the inside out. When I noticed blood in my stool I decided it was time to see my PCP. My appointment with him was a week ago today. He ran a blood panel and ordered a CT scan of my abdomen and pelvis, which I had done on the same day. I'm not sure if it was from the barium, but my stomach was so distended I looked 6 months pregnant after the CT scan. I had terrible diarrhea from the barium, but again, felt no relief.

I have a coworker who's sister is a radiologist at Johns Hopkins, and gave her my CT disk to read and see what she could tell me. She called me the following day and said that my organs are all "textbook perfect" but that she noticed two trouble spots where there was some thickening of the walls of the terminal ileum. She asked me what I had seen my PCP for, my symptoms, and why he had ordered the CT scan (I had given her none of this information before she read the films). She mentioned Crohn's as a good possibility, but said that the fat surrounding the "trouble spots" still looked good (I assume the fat thins out as the intestinal wall thickens?). Ten minutes after getting off the phone with her, my PCP calls and says my results from American Radiology came back clear, and my blood panel looked good.
At this point I should mention that I have cystic ovaries and have been diagnosed with PCOS (although I do not fit the physical stereotype for PCOS) for three years now. I have never had any serious problems with the cysts and have felt twinges and pinching in my ovaries when a cyst would rupture, so I am familiar with that pain. My PCP said, "You have cysts on your ovaries and I do believe the symptoms you are having are being cause by a potentially ruptured cyst." I informed him that I had gotten a 2nd opinion on the radiology and what I was told about the terminal ileum, and the direction of his conversation quickly did a 180. I also asked if there would be any relativity to the ovaries and the blood in the stool, the pain under the ribs, the diarrhea/constipation, etc., and he said likely not....I was a bit disappointed in him at this point.

I have scheduled with a GI doctor and my appointment is on 7/12/12. At this point in time I am still experiencing the pain in my left side, abdomen and back, some burning discomfort in my stomach and moving upward towards my throat, as well as fatigue, night sweats, and really weird dreams. I have not had any acid reflux or vomiting, and haven't had any recent bouts of diarrhea or blood in my stool, but am still constipated.

I'm not really sure of the point of this post, except to get this ordeal down in writing (well, typing lol). I don't feel well and haven't felt well in a while. I just hope the GI doc will help me get an idea of what's happening, because the limbo that I'm in right now is awful!! I have forced myself to stop googling symptoms because I'm only terrifying myself more.

Has anyone experienced symptoms similar to these? Are there good questions I should ask the GI doctor when I see him? At this point I may not have Crohn's disease, who knows...but I'll be thrilled to find out what is happening to me!! As I wrote all of this down I started to think about the number of people who have experienced symptoms and other issues for years and years, and here I am complaining of a month or two of an overall ill feeling. I have much respect for those of you who have dealt with this long-term, I hope I have the strength to do it! Thanks for reading, and thank you for giving me a forum to get this frustration out!
07-02-2012, 02:31 PM   #2
Skycruiser
 
Join Date: May 2012
Location: Washington
Deleted.

Last edited by Skycruiser; 07-31-2015 at 01:27 PM.
07-03-2012, 11:39 AM   #3
David
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Join Date: Feb 2006
Location: Naples, Florida
Hi Lydia and welcome to the forum. I'm glad you joined and felt comfortable sharing your story. I'm so sorry that you're experiencing so much trouble though, that must be miserable

Your symptoms would indeed be consistent with Crohn's Disease and the thickening of the bowel wall showcased by the CT is consistent as well. One of the most difficult aspects of getting Crohn's Disease diagnosed is the less than perfect readings from many of these tests. It can be HARD to get a proper diagnosis.

With that said, there are plenty of other potential causes for the symptoms you're experiencing. For example, various infections such as yersinia or even intestinal tuberculosis (not likely) can cause it. And most would be preferable to a Crohn's Disease diagnosis so let's hope it's something more simplistic

I'm glad you're going to the GI. That's the logical next step. Just make sure you don't accept a, "It's probably IBS" diagnosis without extensive testing first as that can sometimes happen.

We're here for you! And by all means, feel free to setup shop in our undiagnosed club. The folks there are amazing.
07-03-2012, 01:06 PM   #4
Angrybird
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Join Date: Nov 2011
Location: Cambridge, United Kingdom

My Support Groups:
Hello Lydia and welcome to the forum, I am sorry to hear that you are going through so much and really hope that you can get some answers soon. Do have a good nosy around - especially the undiagnosed club - as there is lots of info here. Also get a pad and pen and write down all the questions that come to mind along with the symptoms you have been experiencing and take it with you when you go and see the GI, that way you are less likely to forget anything.

Wishing you all the best.

AB
xx
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DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
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Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
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