A few important questions

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Regular Member

Date Joined Mar 2008
Total Posts : 312
   Posted 3/26/2008 7:48 PM (GMT -6)   
HI, this is my first time posting on these forums. I came across them a few days ago and figured it wise to ask my questions here to seek some answers.
Ive had UC for about 4yrs (current age 28). Started out with massive abdominal pain and went to the hospital and they prescribed me some vicodin and sent me home. Did that another 4 times and then spent a week not being able to eat much and lost 40pounts (normal weight is 180) before I was able to get the help I needed.
Now the GI Ive had for the past 4 years, I cant say Im very happy with. I used to see him once every month or other month and now its about once every 6 months. He's never really bothered to answer any of my questions regarding alternative medicines or surgery (Im taking 20 mg prednisone and 3000mg sulfasalazine daily). When i usually go and see him, if my appointment is at 3pm, I dont get to see him till 5 or 6pm. Now I understand hes got a lot of patients to help but I really want to get a GI that cares about me as a patient and is willing to answer my questions and able to help me seek other forms of treatment other than ingesting steroids.
Ive had my disease go into remission only once and it was for about a year. I was trying to ween myself off the sulfasalazine because it gives me massive migraines every few months when the disease decided to rear its ugly head again. Ever since then Ive been taking prednisone and sulfasalazine. The closest Ive come to weening myself off the prednisone has been 5mg but then the diahrhea starts again followed by stomach cramps etc. Honestly I dont even bother asking my doctor anymore or telling him when I have flareups because I dont think he cares or will have anything to say about it.
Now im used to all the side effects of steroids (constant weight gain and loss, round face, acne) but lately Ive been feeling weak and my legs have felt somewhat weak and sore all the time. Thats when i started researching on the web and found out all the side effects of prednisone and now im determined to get off this drug.
Now my question to you guys is this:
1) How do I go about looking for a better GI? or does anyone in the san jose california area have any recommendations??
2) Do any of you have any suggestions about obtaining insurance??. Ive been paying out of pocket for my meds and even the colonoscopy I had two years ago. Tried several insurance companies including kaiser and blue cross and was turned down.

Post Edited (Doz79) : 3/26/2008 6:52:22 PM (GMT-6)

Elite Member

Date Joined Mar 2003
Total Posts : 10407
   Posted 3/26/2008 7:58 PM (GMT -6)   
Doz, can you qualify for MediCal? If not, California should have some kind of plan for people who have trouble getting health insurance, most states do, and Cali is usually ahead of the game on things like that.

You definitely need a new GI. Sulfasalazine is the original, oldest drug for treating UC. There are newer drugs that have (for most people) less likelihood of side effects; Asacol and Colazal are commonly used. Rectal meds (enemas or suppositories) are usually helpful in treating from the other end. And yes, you've been on steroids far too long, they present a real risk to your bones and joints, vision and general health. If you have a primary care doctor, you might ask there. Or try a major teaching hospital.

You might try putting yourself on a good probiotic to replace the good bacteria in your colon. This can help, and most of us do take a probiotic.

I hope you find a way to get better health care soon, and welcome to HealingWell.
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
Co-Moderator UC Forum

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