Doctors convinced, I’m still skeptical

puremichigan · Mar 13, 2014

Doctors convinced, I’m still skeptical

Hello everyone! This will be my first post and I was wondering if anyone else has been going through what I have in the last few months. Basically in September I went to the ER because of my abdominal pain. Since then my doctor has been pursuing the possibility of Crohn's disease based on my symptoms (weight loss, decreased appetite, abdominal pain, nausea, blood in stool, hyperbillirubinemia, ASCA+ and pANCA-) and age (19). I've had a CT scan, MRE, endoscopy, colonoscopy, and an ultrasound. Everything came back normal. After the scopes I was put on Prilosec for stomach inflammation. The next steps are waiting for my Prometheus lab results and to receive a capsule endoscopy. I guess I'm just wondering if it's really this hard to diagnose Crohn's. Have you guys had similar problems with getting diagnosed? Should I consider other possibilities?

nikimazur · Mar 13, 2014

It is extremely difficulty be diagnosed. I know there are a couple of great un diagnosed threads on this board. For me it took 2 years, five colonoscopies, six endoscopies, two ct enterographies, one MR enterography, a small bowel series, capsule endoscopy and a million and a half blood tests to get an official diagnosis... It was brewing for two years before the CT/MR and then colonoscopy showed Crohns. My ASCA was positive, along with an elevated CRP from the very beginning of the process.

Waverly · Mar 14, 2014

Hi puremichigan. A fellow Michigander here.

Yes, it is a difficult disease to diagnose and it is not unusual for it to take a while. Unfortunately, there is no simple single test to diagnose it and it has the same symptoms as other illnesses. I've had crohn's for about 30 years. It took about 2 years to diagnose mine, but this was before CTs and MRIs. Mine was finally confirmed with an upper GI with a small bowel follow through which showed a narrowing at the terminal ileum. I hope you get some answers soon. It helped me to know what I was dealing with.

Holly95 · Mar 14, 2014

I've had pretty much the same thing happen to me (I'm 19 also) except you have had a few tests I haven't.. My surgeon diagnosed me with Crohns in October 2013 and started me on Pentasa, I had a few courses of Prednisone as well.. Then a GI took my diagnosis off me, and now I have been referred to a gynocologist to have a laparoscopy to see if I have Endometriosis that is causing Crohns symptoms.

I swear it's a never ending circle with these "invisible illnesses"

puremichigan · Mar 14, 2014

ok thanks a lot guys! It nice to hear that I'm not alone and it's hard hanging in there especially when there are many illnesses and disease's that produce similar symptoms. I'll keep pushing forward and hopefully I can get some answers soon. On another note, have any of you found that drinking alcohol makes your symptoms worse?

Waverly · Mar 14, 2014

Alcohol definitely irritates my crohn's. Something else that may or may not help you. I found the many chemicals and preservatives used in processed food irritated my illness. I eat as much organic as possible.

Nancye50 · Mar 14, 2014

I'm recently diagnosed too. I have been able to tolerate beer totally fine but have tried a glass of red wine twice and my stomach hurt within 30 mins. I'm still sorting out symptoms and stuff though and am on pred. Maybe the acid in the wine is too much bc of the pred. right now.

Holly95 · Mar 15, 2014

Yip. I don't drink alcohol at all. I was never a fan of it anyway but vomiting within a half hour of having ONE small rtd bottle of vodka (6%) was enough to out me off ingesting it at all. And the pain before the vomiting was excruciating. Don't think I've ever had that sort of pain before or since then.