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Well, I'm out of the club. I had what the docs think was an allergic skin reaction to the med. My GI doc doesn't want to risk me going back on, so I'm looking at next options (probably Humira). It was a funky year. I'll poke my head in here now and again.

Definitely consult a derm doc. They can do a biopsy and can tell quite a bit from that. I had similar sx that didn't respond to steroids or antifungals. It ended up most likely being an allergic reaction to Remi so we've discontinued the med and symptoms have steadily improved.

Definitely consult a derm doc and keep your GI posted. I had a similar reaction a few months ago that looked like large mosquito bites on one leg that gradually spread from the knee to above the hip on one side. Onset was within a week of an infusion. At first they thought it was an...

I was told by Blue Cross / Blue Shield that the test was still considered investigational and not yet eligible for reimbursement at all. I decided to not go ahead with it and just discontinued Remi based on the side effects I was having.

I was always useless on the day of my infusion, a bit dopey the day after, and then energy basically back to normal.

My 2 GIs have consistently recommended a "low residue" diet for my stricturing Crohn's. They more or less dismiss anything having to do with allergies or food sensitivities, but are concerned about fiber causing strain and being mechanically difficult to get through the stricture site. I...

Getting back on track here. After a month-long flare after starting Remicade, things settled down and a CT scan showed reduced inflammation and no sign of fistula. GI is going really well, but I've been developing some peripheral neuropathy in my left arm. My GI doc freaked out and had me...

Jennifer, do the plusses and minuses refer to Mendelian dominance and recessives or is it code for something else? If Mendelian, it would just mean that your folks are both +/-. (In which case you'd have the same chance of being the "same" or "opposite" of your sib: 25%.)

Those results are underwhelming to say the least. The treatment group did not show statistically significant improvement on their primary outcome measure and had a lot of people drop out due to adverse effects. Sounds like that particular formulation has a ways to go before market.

I've gotten the message elsewhere that the mural thickening and lack of inflammation are not consistent statements in radiologist-speak. I'm going to have a radiologist I know personally take a second look at the images. My GI doc wants to take a peek via colonoscopy.

Sorry to hear that, Ann. My GI was able to reach the ileum with colonoscopy. My impression is that's not unusual, because that's how they get the biopsies to check for granulomas (for CD diagnosis). Otherwise, I'm not sure what they'd do other than CT/MRE. I have ileal involvement with my CD...

I might be overly optimistic, but I would expect a lot of doctors to respond well if you were to go in there proactively asking for a rational discussion of the science behind the pros and cons of marijuana use. You could also just keep it focused on the specific question of interaction with...

I recently started Remicade and my GI doc said it was fine to drink alcohol. She also had no problem if I wanted to pursue a medical marijuana card (though doesn't issue them herself).

I spent over a year after diagnosis basically doing things drug-free other than a time-limited course of budesonide. I focused mainly on stress-management with some diet and acupuncture thrown in. 1.5 years later a repeat MRI showed worsened inflammation and the possible beginnings of a...

Yeah, you're in the thick of the tough days and have had a rough bunch of symptoms early on. I totally agree with what others have said about trying to keep living your life as fully as you can. There are lots of management options out there. Personally, I'd recommend trusting your care to a...

A family friend recently passed away close to two years since her diagnosis with pancreatic cancer. She was always adamant that she was "LIVING with cancer" rather than "fighting cancer," and until the end filled her life with meaningful activities and relationships. I think about that when I...

I'm hoping I can get some help on interpreting CT results. The report boils down to the following impression: "Mural thickening and fatty infiltration of the terminal ileum [consistent with CD]. No evidence of active inflammation at this time. No evidence of bowel obstruction." Given that...

It's now three weeks straight of feeling crummy, which all started 4 days after starting Remicade. Bloodwork, stool tests, and CT results look pretty normal. I had my first formed BM yesterday, but then back to D (hopefully just due to the CT contrast agent working its way through me). I ate...

Feeling pretty discouraged. I've never really had "flares" before, but this one is going on for 2 weeks. (In the past I've just had obstructive episodes.). I'd gotten up to one light solid meal per day on Saturday and stopped having D, but I think I pushed things too far tonight by adding in...

My stool test was preliminarily clear, so my GI cleared me for infusion #2 tomorrow. I'm way less anxious about it this time, though bumming that this flare seems to be continuing. I was able to do some solid food for a few days, but a burrito at dinner did me in. :poo: