Don't know what to think

[Starving artist]

24 female. 2 weeks ago I woke up with sharp pain by my naval that was distinctly on the left side and intense diarrhea. D subsided throughout the day but pain continued. Next morning same thing- diarrhea right when I woke up, pain continued. Day 3 morning diarrhea but pain felt slightly better but still every time it tried to eat the smallest bite of food the pain would begin stabbing. That night the pain became so SEVERE I thought I was going to pass out, progressively got worse but the diarrhea had stopped. Went to Northwestern ER and was admitted immediately, no fever but when I got to the room I started projectile vomiting. Dr thought it was appendix even though I could pinpoint the pain to the left side. CT revealed low lying cecum, mucousal hyperenhancement and inflammation of terminal ileum, fat stranding rectum. Due to skip lesions Crohn's was suggested. I was admitted for the next 2 days receiving IV antibiotics & morphine. stool negative c diff etc. LARGE volume mucous diarrhea, have never seen anything like that before- looked like something out of the movie alien.No fever until 8 hours into IV antibiotics. Elevated white blood cell count, anemia negative but very low. Colonoscopy today appears normal but still awaiting biopsy results of the inflamed areas: Chronic diarrhea, fatigue, nausea, chills, hair loss, abdominal pain, mouth sores for the last 12+ Months. Had thyroid checked 6 months ago because I feel sick all the time, that was negative. I had an upper GI ulcer diagnosed a year ago after tar colored stool. Former GI didn't do scope then instead prescribed Prilosec and antibiotics. I don't feel right and haven't for a long time. My parents are relieved by today's findings and I'm worried that f the biopsy comes back negative they will insist I everything is fine and dismiss my concerns/ wanting of further testing. Am I over reacting? The area in question was the small bowel so is it normal for a colonoscopy to appear this way?

 

[seebee]

So sorry to hear your story. Though the word Crohn's can be scary, once properly diagnosed, there is treatment. As far as the biopsies revealing inflammation - if it comes back clear try to push for a pill cam or another test that will be able to reach the small intestine.

Good luck.

 

[Orchid]

Given your level of long term symptoms I don't think any sane GI is going to try to say "it's in your head" even if the biopsies come back negative for granulomas, and quite honestly, you just described really textbook severe Crohn's Disease. And yes, the farthest a normal colonoscopy can go is the terminal ileum. Luckily for Crohn's Disease diagnosis that is usually more than far enough because it's one of the most commonly effected areas.

 

[Starving artist]

Thank you both for your helpful input. My parents think I'm a hypochondriac because I always feel sick and tests like my thyroid have been negative. When I called my mom from the hospital and told her the ct findings and that the doctors wanted me to follow up with a colonoscopy for Crohn's she said "don't be crazy you don't have Crohn's." She is now completely supportive- my uncle (by marriage no blood relation- he's a pathologist who suffers from UC) told her his immediate reaction to the findings was CD as well. So she's listening to me now but I'm worried if the biopsy is negative she will insist it was something infectious. I've tried to find something or anything infectious that causes only the TI to be inflamed. I trust my doc, he's a great doctor and a family friend so he has gone above and beyond- squeezed me in immediately for consult, left for vacation and put me in for colonoscopy his first day back. Ever heard of anything else causing TI inflammation?

 

[shamrock15]

From what you said, the words "skip lesion" jump out at me. It's what I have, and your development does sound pretty familiar (granted, mine was about 27 years ago). Have you had weight loss recently? The rest of what you describe is pretty familiar. If is is skip lesions, make sure that you are treated for it. It doesn't respond to some meds like budesonide (I was on the trial for it), and if my case was similar, pentasa and asacol didn't work either. I currently take a combination of remicade and azathioprine and it has me in remission for the first time in my life (knock on wood).