9 Responses to 737 Person – UC Meds Side Effects Survey Results

  1. shelly in maine May 3, 2015 at 4:23 pm #

    Way to go Adam..as usual…tons of info and feedback for people in one spot. Some of those results still surprise me!
    :-) Best and good health, Shelly

    • Adam
      Adam May 4, 2015 at 12:04 am #

      Hey Shelly,
      Yes indeed, some results are for sure super interesting/amazing.
      thx for participating again:)—Adam

  2. Deborah May 3, 2015 at 4:41 pm #

    THANK YOU SOOOOO MUCH for this fabulous information!!!! I learned so much its unbelievable. Wow!!! Thank you folks for all the stories….they helped me more than you could ever know. And Adam, you are an Angel from Heaven to us. Bless you Adam for caring about us and giving us this family of fellow UCers. I cant say it enough….THANK YOU ALL. :)

    • Adam
      Adam May 4, 2015 at 12:05 am #

      thx so much Deborah, you do know though that this site would be nothing without the participating of people like you:)

  3. Ken Spriggs May 4, 2015 at 11:59 am #

    Nice work Adam! Really well done. There’s a website that’s collecting side effect information called rxisk.org. It’s unaffiliated with drug companies and such. It also contains a lot of side effect information about the drugs mentioned. I have Crohn’s so I didn’t take your survey but a lot of the drugs overlap. In fact I think all of them do.
    -Ken

    • Adam
      Adam May 6, 2015 at 1:52 am #

      thx Ken! always great to hear from you and keep up the great work on your diyehr.com page and all you do!!!

  4. Nancy May 4, 2015 at 2:04 pm #

    Adam,
    Just want to thank you for your informative website. The best part has been knowing I am not alone in this unpredictable uc battle.
    You are helping so many people out there which is wonderful. Keep doing what you do so well. Cheers, Nancy

  5. Jamie May 6, 2015 at 5:55 am #

    Thank you Adam for the report. I have been totally against all drugs past Asocol and Apriso. I do a combination of the SCD diet, Apriso, Supplements and the FMT. Bring back the FMT. In my experience you have to have your system in some what in control in order to hold it in. I was not sure if it really worked until that last time I had it done September of 2014. I was so sick I could barely walk. I had an FMT and the next day I was better. This made me a believer of the FMT. It seems sometimes it works instantly and sometimes it takes a few weeks. No one knows how often to do infusions. It seems like you need to do it 3 or 4 times in a row then take a break for 3 or 4 days then repeat. Once better than do one topper every 3 months.

    I have always had control of my body and fought with one of my doctors. He said, if I didn’t take Imuran that I would get sick go to the hospital and die. Nice, huh. I changed doctors and my new doctor would like me to get off of Apriso, but the combination seems to help. Also, nicotine patches seem to help when I get a flare. I usually get a flare because I go back to eating potatoes hoping I could just do a gluten free diet. Well that experiment is over for a long while.

    Now if you can believe it, I almost would rather have surgery instead of going on any of these drugs if it came down to it. I would trust my new doctor, because he is a supporter of not using drugs if possible.

    Thank you for the report as it concludes I do not want to go on any of the drugs higher than I am on now. I gather from your website that those who use the drugs then have to get surgery anyway still have to live with the side effects. Sounds crazy, but I concluded I would rather go straight to surgery if needed than go on any of those drugs.

    Thank you,
    Jamie

  6. Jamie May 6, 2015 at 5:57 am #

    Please notify me of any comments by e-mail from my comment above. I did not see to check that off before I submitted.

    Thank you,
    Jamie

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