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Woohoo! I have a new GI AND a new treatment!

I saw my new GI today and it was such an eye opening experience. Not all doctors are created equal in competence.

My other GI had diagnosed a severe allergic reaction to Salofalk (worsened pain, extreme headaches, red skin patches) so concluded I could never take 5-ASA again and immediately ordered tests to start immunosupressive therapy ASAP. In the mean time, I was put on prednisone because the flare was extremely severe (12 bloody stools a day). Aside from MMJ and my short course of pred (which I tapered off early because of the awful side effets), my disease was completely untreated until today.

My first GI wasn't entirely incompetent but he was neither empathetic or warm, welcoming or inviting. Maybe because of his age, or background... I don't know. But I wasn't satisfied.

I studied three years in medical school before dropping out so made a few calls to past colleagues who did stick it out and with whom I had kept some sort of contact with. I was able to get an appointment with this GI I had heard so much good about (though it took a LOT of hoop jumping).

Well, all my efforts were completely worth it.

To begin with, this GI wasn't convinced I was allergic to the actual 5-ASA molecule, but rather the envelope that the Salofalk manufacturer uses to deliver the medicine. He was also able to call the lab (which he has on his speed dial) to get the results of my TMPT activity tests, which I had been hunting for the past month without result. My other GI couldn't help. But this GI has the lab on speed dial and could get the result in 30 secs. :dance:

So he prescribed Mezavant instead and asked I test it out to make sure I was actually allergic to 5-ASA before starting Imuran since, in his words, "it would be stupid to lower your white count to treat your disease unless we're sure 5-ASA can't do the job."

HE WAS RIGHT!

I took the Mezavant and had no allergic reaction. My other GI was ready to put me on a lifelong regimen of Imuran without even doublechecking the allergy was real. That is pure incompetence. I even asked him specifically whether we could try anything else (like suppositories), since I had read about them here, but he said no. After nearly a year of flaring I finally have a treatment and can start looking ahead positively. I am SO happy!

Moral of the story: if you're not happy with your current doctor, shop around, it could be worth it. It sure as hell was for me. :mario2:
 
That's awesome! I know you must have felt a great sense of relief to finally get answers and to be getting them from a doctor that has all the proper resources right at his fingertips!

I hope your new treatment helps!
 
I was waiting to start an actual treatment before looking into supplements, which I see you take (and a lot). Can you say they make a noticeable difference?

I'm open even to meditation if it gets me in remission faster.

New GI even threw in a bunch of more tests, including an enteroscan (had never heard of it before), a few blood tests (including gluten intolerance just to check) and some more labs to be done in a few months as follow-up.

It does feel great to feel supported :heart:
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
Truthfully, I can't tell a whole lot as far as the supplements. Been taking the folic acid all along as was directed by my original GI along with calcium, multi vitamin and iron. Eventually will talk with my new GI about the supplements to see what he thinks. Right now I'm just leaving things as they are. Next time I should see him is in April. So, we'll see...
 
Excellent news, Francis! This is very exciting!!

The only supplement I took specifically in connection with IBD was a prescription probiotic. It did help some with diarrhea.
 

scottsma

Well-known member
Location
Tynemouth,
It's nice to hear good news,really cheered me up.I take Pysillium Husk capsules to help calm my "urgency".It has made a difference to me inasmuch as I wouldn't want to stop taking it.I know you will keep us updated,it would be good to know that your new regime is working.Best Wishes.
 
whoa, that's brilliant news. tell me his name and ill try and see him when I get there...lol
I was taken of the 5asa's as well because of pancreatitis that they still haven't figured out. I was talked into remicade (which did the trick) but live in fear of catching everything.
my mum had a look at the side effects of remicade ytd and said its not worth being on it for all those risks. whats the worse that could happen. you're proof that going drug free IS NOT THE END OF THE WORLD and im happy you haven't had to go the biological route.
good on ya for being so proactive. it pays to know people. :)
ju
 
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