Define quack

Not to be name calling, but I don't think my doctor knows his @ss from a hole in the ground.

Short version = I'm being bullied into a treatment (biologic) that I think is premature for a condition I think he got wrong. I went to my general MD with a "flare-up" and asked for prednesone but was referred to the GI Clinic where after I spoke for about 90 seconds, was shut down, told "I'm not giving you prednisone. It's the most dangerous drug out there." Instead I can choose to go with Humera or I can choose to go home. After a few minutes of explaining that my worries of "destroying my immune system" were wrong, since my immune system was chaotic anyway, and if I wanted his help stepping up my treatment - go home and think about it. I left with nothing.

I subsequently went to a local urgent care clinic and got a 28 day supply of Predisone (outside the system) 60mg tapering to 20mg. I'll reschedule another GI visit with another MD next week (8 weeks out) to reevaluate my treatment. I think the real problem lays with the mainenance drug, mesalamine - in the Penasa version, where Asacol was prescribed in years past. But these doctors talk to each other. The new MD is gonna prolly go with the other MDs conclusions. I don't really trust them any more.

Okay, LONG version = I've had U Colitis for over 20 years, taking Asacol the whole time. Flare-ups every few years, treated with Prednisone and hydrocorisone enimas, and it always worked. Five years ago I lost my medical insurance in a divorce and went untreated for three years. This led to a fistula, infection and surgery - this done at the VA hospital - where it took 8 months to finally see a GI Clinic doctor who read the entire incident as Crohns and not UC. After the surgery (removed 9" of lower colon and 2" of small bowel where the two had adhered) I couldn't get the loose stools under control, so the GI Doctor gave me Predisone and set me up for testing to begin Humera treatment. Well, the Predisone worked and I was fine with just mesalamine (Pentasa) for about a year. Now a new flare-up.... only he's not gonna let me trick him again. This time "NO PREDISONE FOR YOU". Really, I think the Mesalamine is the wrong type. I think the maintenance drug needs to be rethought and I think since the colonoscopy showed all of the inflammation in the decending colon and sigmoid, I still think it's colitis

But what do I know - I'm just a dumb patient. Did I mention this was the VA?

/rant

Yep, sounds like Crohn's to me, not UC.

Also sounds like your new doctor actually does know his stuff, and perhaps you should listen with a more open mind. Or do some reading at the ccfa.org site or some other online site that has *reliable* information.

Pentasa, Asacol, and other mesalamines aren't going to help your fistula or prevent another fistula or another surgery. You're wasting time and money on them. Studies show they work for mild to moderate UC but not for Crohn's. They are no better than taking a placebo.

And your doctor is right that prednisone should be avoided if possible. Studies have shown that frequent or prolonged courses of steroids are risky - riskier than Humira or Remicade, for sure.

You are indeed a candidate for Humira, based on your history of surgery & fistula.

I agree with your doctor and what everyone else is saying. A fistula and inflammation in the sigmoid colon almost certainly points to CD. Doctors are really trying to get away from relying on prednisone for CD flares and is thought of as an antiquated approach with more negative side effects than beneficial. They are also taking more of a top-down approach to treatment, meaning start with the big-gun (biologics) instead of starting with weaker drugs and slowly progressing if that does not work. As others have said, mesalamines are thought to be ineffective in treating CD and certainly won't help with a fistula if that is still a problem for you. I would try the biologic out, you may be surprised at how much better you may feel.

There are some good online resources on IBD that you may want to peruse at your leisure in order feel better convinced that your Dr. is on point. Also, any good doctor would be fine with you getting a second opinion if that eases you mind as well. Good luck to you!

I agree with the others as well as the GI that offered you Humira...I too think you have crohn's and not UC (regardless the same meds used to treat uc are used to treat crohn's colitis which is CD inflammation in the colon).

Pred is a nasty awful drug and I wouldn't be surprised if it stops working all together for you at some point as it can be famous for doing that and the permanent side effects are horrible compared to many other meds, I don't hardly have any side effects from Humira, the ones I do have are easy to deal with unlike pred, I got horrible headaches from Humira so all I do is take an antihistamine before bed on the days I do my shot, I also get itchy little hives after getting out of the shower but that soon disappears once my body temp goes back to normal from having a hot shower...prednisone sucks in comparison IMO...Humira was the first med to actually put my crohn's in remission (I have crohn's colitis) and clear my fistula up as well (which you should know, once you get a fistula the tract will remain forever, it can be closed up by Humira but next flare likely means recurrence of the fistula.

The GI isn't a quack IMO.

Okay guys. I'm grateful for the input. And you're (prolly) right. Maybe it's my MDs bedside manner that's got me jacked. I'll ask for a diff GI MD when I call tomorrow. Also I was able to download my medical records, including Dr's notes and the colonoscopy summary. Interesting reading, and there's a lot they didn't tell me. I can see (understand) clearly that this is crohns colitis not ulcerative colitis. I will consider stepping up the treatments, I'm not sure about poking myself with a needle every two weeks. That's like slamming my thumb with a hammer - it's okay by accident, but counter-intentional.

Thanks for the input - you guys rock

Glad you're seeing it this way cbuilder!!! I flared for 23 yrs straight, I would have killed to find out what remission was like especially before getting sick with IBS as well and trust me, I'd rather poke myself with a needle then flare with CD (or even IBS bt it doesn't work for IBS sadly)...I do weekly shots not biweekly anymore and I'd still rather put myself through it than live with what my bowels put me through without my weekly Humira shots....you could always ask about remicade, that's usually offered as well since Remicade and Humira are basically the very same drug just different administering is all.

Best of luck in finding relief very soon!