Tired of the Run Around...

[Logan]

Hey everyone,

I'm going to try to keep this as short as possible, so I don't give you eye strain I was initially partially diagnosed with Crohn's following an ER visit in '06, when I was 18, for severe stomach pain. They did a CT, Barium swallow, and Colonoscopy and found inflammation in the Terminal Ileum. Doctor was very back and forth about the diagnosis, finally saying Crohn's and putting me on Pentasa. A day after the tests, all pain was gone. Did a follow up, discontinued meds, and doc said I may never have another issue.

So I went on with my life, the only symptoms of a problem were every 3 or 4 months I'd have a debilitating attack of stomach pain, which seemed centrally located, to the point that I could not function. It would pass in a day (two at most), and I'd continue like before. During an attack, I could not eat or drink anything. Heck, I could barely move. This remains true to this day.

Well in 2008 I wound up back in the ER with very bad pain. Did the same tests, only this time a biopsy was done on the TI. Results came back as regular inflammation. The day after being admitted, all pain was gone, and I was eating McDonald's in the hospital room. Diagnosis was tentatively Crohn's.

Off and on I've seen other GIs over the years, and their opinions vary widely from hey you just had some inflammation, to Crohn's, to IBS, to possible gluten allergy, etc. etc. No concrete diagnosis.

I recently got a new GI, who upon meeting me and hearing my previous diagnosis of Crohn's, completely disagreed. Said my symptoms just didn't fit. No chronic diarrhea or constipation, no nutrtional deficiencies, no limitations on food (nuts are tough though, so I'll call that an exception), no bleeding, no daily symptoms. Bear in mind, this is almost 6 years of being non-medicated.

Well after a recent attack, he sent me for a CT with contrast, without contrast, and with Barium. Results showed thickening/inflammation of the terminal ileum, indicative of Crohn's. We scheduled a Colonoscopy and biopsy, and after he said he was thinking Crohn's...that his first assumption was possibly wrong. Okay.

Biopsy results once again fail to positively diagnose Crohn's, and he did a blood test at the height of my problems looking for something to indicate Crohn's, and it came back normal.

I don't know where to go from here! I just want a positive diagnosis, I'm tired of the back and forth. I'm 24 years old now, and this has been going on since I was 18.

If anyone has had a similar experience, or any thoughts, please respond. I'm almost at my wits end!

Thanks,
Logan

 

[Angrybird]

Hello Logan and welcome to the forum. It must be very frustrating to not to be able to get a definitive diagnosis, unfortunately it seems to be common to go through this merry go round of tests without seeming to get anywhere. What has the doc said about this? Are any more tests in the pipeline? I do hope this can be worked out for you soon hun. In the meantime do have a good look around and definetly check out our undiagnosed club as there are people here who can totally relate to what you are currently going through: http://www.crohnsforum.com/forumdisplay.php?f=75.

Wishing you lots of luck.

AB
xx

 

[Logan]

Thank you Angrybird for your response, I'll be sure to check it out!

As far as tests go, I've had 3 colonoscopies (2 with biopsy), 1 edoscopy (with biopsy, I have acid reflux problems and gastritis to go along with the other, but everyone seems to agree that it's unrelated), 3 or 4 CTs, abdominal ultrasounds, barium CTs/Xrays, abdominal xrays, blood work, etc.

Are there any tests that I have not taken that I should request? I also have a hematologist for blood work, as I've been iron deficient for as long as I can remember. I get infed transfusions periodically for this as well.

Thanks again,
Logan

 

[KellyMom]

Hi Logan,
I am also new to the forum but wanted to say I hear you about the run around. It is exhausting to deal with, and frustrating too! I was just diagnosed with Crohn's in the terminal illeum. My doc did an endoscopy first, finding mild reflux. Then, a colonoscopy finding a benign polyp and two ulcers in my illeum. He also ordered a capsule study to check the rest of my intestine which was clean, even though most of my pain is concentrated there. Both my blood work and my biopsies did not indicate Crohn's. He gave me the diagnosis soley based on the ulcers which did not clear up in the 4 months from colonoscopy to capsule study, since they saw them twice and they were the same each time. I think it depends on the GI. Some will diagnose based on ulcers, some seem to want more proof. He started me on Pentasa and said if the pain gets better it will confirm the diagnosis for sure. I guess I am saying they shouldn't rule out Crohn's just because your blood and biopsies check out. I am a newbie, so I won't be able to help much with further testing ideas except maybe a capsule study if you can get GI to do it? It was comforting for me to know they have now seen my entire GI tract visually. Good luck!

 

[Logan]

Hi KellyMom, thank you for sharing your story! As far as I know, mine is also found only in the terminal ileum. It's been a long time, but I believe when I had my first colonoscopy in '06 they found a mild ulcer. This past scope only mentioned ileitis, no mention of an ulcer. Would that be specified in the findings? I don't go back to my GI doc until the 10th, and I can't even call because he's out of town!

I took Pentasa back in '06 as well, I wish I could have used that to confirm, but my pain left on it's own in a matter of days...Am on Nexium now for the acid reflux and gastritis. When I had the CT gastritis wasn't mentioned, and they did a full abdominal and pelvic. Found the ileum inflammation instantly, so I don't know if that means my gastritis is gone or not.

I will ask about the capsule study, that sounds like a great idea! Thanks!