Crohn 's and IBS! HELP! TIRED OF BEING A MYSTERY PATIENT!

Hello all,
I'm 22 years old with a history of Crohn 's. I was diagnosed when I was 10 years old after the conclusion that they couldn't find Crohn 's in my blood, stool, colon, ect. I just had every symptom besides bloody stool. Vomiting, diarrhea, fever, cold sores, weight loss, delayed growth,sev abdominal pain, depression, confusion. ...and o the joy of the handfuls of pills especially prednisone.
I've went into remission with azacohal (sp) for years and about the age of 16 I was diagnosed with IBS. I didn't believe it for a minute! How could you have both? So I quit seeing a doctor for a long time cause it was hard to trust any more doctors. about the age of 18 I got more testing after i had my first child because all of my Crohn 's symptoms were back. The I was told i had colitis but they didn't know what kind. So from the age of 18 to now I've been seeing different doctors get three different answers and I'm in so much pain! Loose watery stools constantly all of my pain is at the top. This Friday I'm getting my 7 th colonoscopy and first endoscopy. I just had my 4th child and was having every symptom of a Crohn 's flare. Cramping, abdominal pain, vomiting, fever, cold chills, cold sores, joint pain, bloody stool, loss of appetite, weight loss, ect. My new GI said I have crohn started pentaza, anti acid, nausea meds, predsione, ect. I wasn't getting better so I went to er and they said I have Crohn 's and IBS.Ct was normal , no flare, blood work showed anima disorder of course. Its been another problem my whole life, and low blood count but not too alarming which has been another long ongoing problem. Just wondering if anyone else has these problems or close to them. Thank you for your time! I've also had a fistula for three years that needs surgery. And no Crohn 's surgerys. On Crohn 's and IBS meds currently. Dont have list with me right now

You can have both Crohn's and IBS, but the latter is a pointless diagnosis once you have the Crohn's diagnosis, in my opinion. Crohn's causes IBS-like symptoms: diarrhoea, abdominal pain, gas and bloating. However, there are certain things which IBS never causes: fistulas, abscesses, strictures, bloody stools, fevers, etc. IBS is literally a syndrome, a cluster of symptoms with no underlying disease - it does not physically damage the intestines.

You sound like you have more than IBS, especially with the fistula. However, Crohn's be a mad annoying disease to detect sometimes. Colonoscopy is the best test for diagnosis, CT scans are not so good. Did any of your 7 colonoscopies show any sign of Crohn's, either visibly or in the biopsies? If not, then I'm baffled, quite frankly. It doesn't sound like you've had much small bowel testing, so perhaps a pillcam, small bowel follow through, or MRI scan is the next step.

I can't help further unfortunately as I'm new to this, keep us posted on your upcoming endoscopy.

Beck :)

Where is your fistula located?

What kind of surgery?

I think having four children in four years might also be a reason you have a fistula, especially if your Crohn's has been left untreated for so many years. Pregnancy and childbirth often cause flares of Crohn's and ulcerative colitis.

You need to treat your Crohn's, and perhaps focus on your health more closely for the next few years. I hope the endoscopy goes smoothly and you get a treatment plan in place.

I have a seton in mi rectovaginal fistula and am happy to leave it there forever rather than risk a repair not healing.

Mystery patient caught my eye! My daughter is suffering with all of the crohns symptoms but the marker test showed negative and all biopsies show negative. 3 specialists later and they tell us indeterminant colitis (I.C.) with a wait and see what manifests. When asked for a letter for school to allow her to go to the bathroom unrestricted they put in writing she has NO diagnosis just multiple manifestations. When I asked why she went from a diagnosis of I.c. to no diagnosis, they changed the letter to read as diagnosis being IBS. Of course I was confused and asked why we had never been told IBS and the reply was that IBS was basically the same things as I.C. With ulcerations. ?????? Hence the mystery????

She has active ulcerations from her mouth ( had some on face) to her anus. They spread into her stomach in a month's time. Pill cam showed in small intestine, colonoscopies show in large intestine, now stomach and mouth and throat. 1st colonoscopy found a large bleeding polyp and it was removed and biopsy showed to be ok. Inflammation all over but doc said no to crohns because of biopsies and ulcerations are aphtous and not deep.

It's a guessing game.....and my daughter is still sick and not herself!

Thank you and we sure will! How frustrating it must be for you even after all these years! I sure hope they are able to help you. Our biggest obstacle for the moment is getting a plan that will work for school on top of finding a med. that is going to bring her some relief.  Thanks again for your concern!!

Glad you found an answer! I am too learning how frustrating how difficult the diagnosis of this disease truly is. Stay strong and good luck with your surgery!

Thank you all for your thoughts. This has been pretty stressful. I'm also so glad to hear your daughter is better! I've been in her shoes and still am lol.