Newbie

[flowergirl]

newbie

story: i've always had mild issues with mouth ulcers, but manageable. until i went on an antibiotic in april for a strep-like illness. 5 days into the meds my entire mouth exploded. my tongue swelled, i had about 20 ulcers and my lips ballooned up to double their size and had thrush. had to go to er. got steroids, anti-virals, antifungals.
everything went away, and i was taking large amounts of probiotics to keep the thrush away. started getting a lot of mucus in stools. went off probiotics. stools went back to normal but mouth flared again. had lots of bloodwork done. crp was high, everything else pretty normal. had allergy/food testing. clear. ent sent me to gi to make sure no ulcers in gi tract, especially after he heard my dad has crohn's. had endoscopy & colonoscopy. some areas of slight inflammation but biopsies for crohn's and celiac both negative.
was on diflucan and valtrex (one dr thought it might be shingles in throat)
made me so sick i had to stop.
have been having horrible cystic acne, way worse than when i was a teenager. have also been having spots.acne on legs and back that take forever to clear and leave scars.
after colonoscopy thought i had a bartholin gland cyst near vagina. nope, turned out to be a fistula :stinks:. have seen about 10 different drs over the course of this. am finally at a gi specialist at a major teaching hospital 5 hours away. am thisclose to an official crohn's diagnosis. had a ct that was relatively inconclusive, although they did find the fistula tract. had another colonoscopy this past friday, and hopefully biopsy will come back positive. can't believe i'm hoping for that. lol
dr. seems pretty sure of a diagnosis though, even without positive biopsy test.

just seems weird that i don't have any of the classic symptoms (abdominal pain, diarrhea)
i do have:
mouth ulcers
intermittent arthritis
recto-vag fistula
bad hemorrhoids
acne/erythema nodosum (sp?)
20 lb weight loss
horrible indigestion
family history

dr wants to (more than likely) start me on remicade even if biopsies are neg. need to try to close up this fistula. i could deal with everything else but that. it's been a horror story.

has anyone else had an official diagnosis based on symptoms and not biopsies?

 

[InkyStinky]

Hi there! Welcome! Boy, you're sure having a time of it, uh? So sorry to hear about all you're going through, but I'm really glad to hear that you have a gi specialitist - really makes a big difference!

My brother (also has crohn's) was on remi several years ago, and it closed up his fistula - so if you do start remi I really hope it works fast for you!

I was dx'd as a kid, so I really don't remember the specifics but the docs used to just call it IBD instead of crohn's or uc... guess I was a hard case. My current dx is crohn's (via colonoscopy biopsies), but there are a lot of people on here who are still waiting for a dx - there's a subforum around here called "undiagnosed club" and the posts in there might help you out.

Anyway, :welcome:

 

[Crohn's 35]

Hi flowergirl :welcome:. I have had a bunch of tests that were taking a year to find my Crohns. Your bms, bloodwork dont always show. Biopsies have to be right near the site of infection... Most colonoscopies can be seen but some can't get past the terminal Ileum, which is like a U turn and if inflammed very hard to get past it. You do have plenty of the classic symptoms, and I am surprise the doctor is putting you on such a heavy duty drug right away. But if it works then could be a good call. Everyone is different in this disease,we all dont have the same symptoms, because they can come and go, mild to severe and locations of it. I would of though Humira would be the first choice but if you are in that much pain and the fistulas as bad, maybe the best thing for you. My biopies were always negative.

 

[scottmyster]

HI Flowergirl, welcome to the forum , you went through alot. but at least you have a diagnosis people have to wait years before they really get diagnosis. I was diagnosis back in 1990 through a biopsy and alot of blood and ulcerations.there was no doubt. in the GI mind. i have had it now 21 years and counting. but, it still flares up every now and then. i hope the medications work for you. best wishes.

 

[flowergirl]

my inflammation on the colonoscopy was only far down in my rectum, which is also where my fistula tract starts, which is probably how it got there in the first place.
i think he's only going hardcore drugs first because of the fistula. i actually have 2 separate holes in my labia, one of which i could stick my finger through if i wanted. and it burns like hellfire everytime i go to the bathroom, pee or poo (sorry to be so graphic, though i'm sure you guys are used to graphic).

he said i could do imuran, but it would take months to see improvement. he didn't seem partial to humira or remicade, said i could do either one. i just wasn't fond of sticking myself with needles.

thanks for all the welcomes everyone.

 

[DustyKat]

Hi flowergirl,

My son was effectively diagnosed on the spot by the GP! :lol:

Seriously though he was diagnosed on symptoms and then when he had his colonscopy the GI officially diagnosed him by sight only. He didn't have diarrhoea or abdo pain either, in fact he had next no symptoms as such. He just felt off, with a couple of random vomits, for a week, I asked for inflammatory markers to be done and so the whole process started with a raised CRP and then GP could feel a mass in his RLQ, that was it. Two weeks later...diagnosis, his sister has Crohns though and her diagnosis period was a dogs breakfast so they were obviously keen not to make that mistake again!

Interesting to note though that Matt does not have any conclusive evidence of CD when it comes to biopsies because he doesn't have granulomas. Even the chunk of bowel removed during surgery stated the same thing...no convincing evidence of Crohns Disease. Matt certainly does have Crohns so a lack of granulomas doesn't mean you don't have it.

Dusty. xxx

 

[flowergirl]

dusty -- a dog's breakfast?? :confused2:

 

[DustyKat]

....

It means a complete mess.

Dusty.

 

[flowergirl]

so it seems i pretty much have an official diagnosis. my colonoscopy showed inflammation only in the last 2 inches or so of my rectum (which is where my fistula starts) but the biopsy came back non-specific.
dr is willing to give the dx anyway based on symptoms and will hopefully get started on meds next week after some bloodwork comes back.

has anyone else had it only in a very small area? or only in the rectum? dr thinks this is probably why i haven't had the diarrhea and abdominal cramping that most people have.