Doctor for UC

My son (age 27) was diagnosed in Sept. with left side UC. Private practice gastro diagnosed him and has been treating him. Started him on 20 mg prednisone and 4 Apriso ER tablets a day. Son responded quickly and did really well until Doctor put him on Imuran to help taper off pred. My son ended up in hospital with acute pancreatitis. My question for you is: there are 2 university medical school centers here that have doctors that specialize in IBD. My son insists on staying with his gastro doctor ( who mainly seems to treat colon cancer patients). Would he be better off with one of the med center doctors?

Don't want to sound rude but your son is 27 and should be allowed to make his own decisions, whether they are right or wrong. I know you are probably getting this information second hand and not really in the know but doctors don't really give Imuran to "help taper off pred". Prednisone can work quickly to help his condition but it is not a drug to take long term and as soon as you get off the pred the UC will return unless you are doing something else to retain remission. Imuran can take a month or two before it takes affect and can be used for a much longer time that the pred. His doctor probably wants to keep him on pred long enough until the Imuran kicks in, then take him off the pred and keep him on Imuran forever, or until it quits working, whichever comes first. I don't have any advice on the rest of your post other than to repeat that at 27 years old he probably wants to make his own decisions.

Can you get referred to each of them by your regular physician for a consultation, just to "try" them out? I've been to several where I only went one time because I was able to tell about their experience, resources, and demeanor only when I talked with them.

Didn't mean to ruffle your feathers but you did say in your original post that "My son insists on staying with his gastro doctor". That sounded to me like he wasn't asking your opinion. In any event, the others responded fairly well. No matter where you go, private or teaching hospitals, etc., there are going to be good doctors and bad doctors. There are only so many treatments in the doctors bags of tricks so, in general, a teaching hospital wouldn't have any more knowledge than a private GI's office and some private GI's have a lot more experience and know far more than a teaching hospital. This is a sucky disease and if you go to the most knowledgeable doctor on the planet for your UC you could very well come back extremely disappointed.

Hi Sister - what the doc has done for your son does not sound out of the ordinary. Did the doc do a colonoscopy with biopsies? The biopsies would better indicate if he is dealing with UC. Has the doc ruled out other potential sources of colitis (like CDiff?) - please note that Ulcerative Colitis and colitis are not the same. Also, just because it is left sided UC doesn't mean that it isn't severe UC...it just means that it isn't widespread.

Pancreatitis sometimes occurs with Imuran/Azathioprine. It's not a common side effect, but it's not unheard of either. Your son and the doctor did the right thing.

There are only so many medications that they prescribe for UC. General it starts with pills like Asacol/Lialda/Apriso. If that doens't seem sufficient, then they go to immune modulaters (like Imuran) which interfere with the immune response. If those don't work, then the doctor might recommend biologics (Remicade or Humira). Those also interfere with the immune response, but at a different level. I highly suggest you read up on the possible side effects of these medications (especially Imuran and the biologics).

Steroids are used differently. They are used to "jump" you out of a flare and to maintain remission while the other drugs kick in. Steroids are awful for you. Read up on those side effects as well.

I would ask about the rectal medications at the next appointment. Sometimes the UC can spread so far up the left side that the rectal meds won't reach that portion. However, the rectal meds can still help the portions they can reach. If the doc doesn't know about various enemas (mesalmine like Rowasa) or steroid enemas, then your son should seriously consider seeing someone else. Those are pretty common UC meds. Now if he gives you reasons why he didn't use them that's a different story. You should evaluate that like you would any other medical information.

There are different alternatives (diet, LDN, supplements) you can look into. Doctors aren't going to be familiar with them or encourage them as they have not been studied the same way drugs have. It doesn't matter if it's a private practice doc or a university doc....you will typically have resistance or dismissal of any alternatives.

I have personally visited a private practice doc (general GI) and a university doc (IBD specialist). I kept with the private practice doc as I felt comfortable with her level of medical knowledge, had good response time with the office in general, felt that she really cared, and she reacted well to my sometimes complex and rather odd patient questions. If your son is comfortable with the doctor and the doctors seems to be treating the UC in a normal manner, then it's fine to stick with the generalist GI. I was originally dx'ed by a surgeon...who once he reached his medication knowledge limit referred me to my GI...and when she reached her limit she sent me to the #2 GI Hospital in the nation. So there is definitely hope that doctors will call in reinforcements when it's time.

Post Edited (ActiveUCer) : 12/16/2012 9:32:03 PM (GMT-7)