Medication for mild crohn's disease?
Sun, April 17, 2016 5:12 PM
Hello,
I'm 23 years old and diagnosed last year with Crohn's disease. I've been on Purinethol (Mercaptopurine/6-MP) for a year, and now I can't anymore because I my white blood cell count has become too low. I have yet to meet my doctor for the follow-up, but I know he will be pushing for either Remicade or Humira.
The thing is, as much as it can be a relief for some patients under crohn's disease, I'm afraid that for me the side effects outweight the goods... I think I'm a very mild case, I have had very little symptoms (even before treatment) other than the occasional 24hr flares.
Is taking heavy medication just to avoid being sick for a day, every 2-3 months, that much usefull? I don't have every day symptoms of my disease (yes, I'm lucky) and I certainly don't want medication taking over some of my energy or quality of life.
Any idea what I should do? Should I refuse the medication and just... go by myself? I know a good diet can help avoid flares but it doesn't change the inflammation, so I'm a little confused as to what to do.
Thanks in advance,
F
Joined Apr 17, 2016
Sun, April 24, 2016 5:29 PM
Reply posted for francisr.
Hi -
I'm a fellow mild/moderate Crohn's patient and here's my advice. For your initial flare-up being put on strong meds (i.e. Prednisone) is common and for the most part ok. You have to get the flare up under control and typically Crohn's patients just diagnosed are in a pretty bad state of affairs because they let the flare up get out of control mistaking it for really bad stomach problems or food poisoning. Most people have never heard of Crohn's Disease and that includes many of those just diagnosed. It sounds like you have a pretty good grasp of your triggers. Remember, they're not all related to food/liquid. It's a complex disease that is heavily tied into the nervous system just as much as the digestive. I don't advise going off meds completely until you've really had a chance to evaluate your lifestyle and all triggers. Remission can be acheived WITHOUT Meds BUT it can also be achieved WITH it. I'm 4 years in remission and take Apriso everyday. Can I go a few days, a week without it and be fine. Sure. Do I? No. It's all about peace of mind for me. I'm comfortable with the choice to take meds daily. That might not be the course of action you want to take. That's fine, it's a personal decision but I would never tell a fellow patient to stop taking meds cold turkey after just been diagnosed (meaning <1 year). You need at least a year to get things right with yourself IMO if you want to try to manage your condition without Meds. You might be fine taking Asacol or Apriso or Lialda etc. They're all in the same group and do pretty much the same thing.
Best of luck to you
I'm a fellow mild/moderate Crohn's patient and here's my advice. For your initial flare-up being put on strong meds (i.e. Prednisone) is common and for the most part ok. You have to get the flare up under control and typically Crohn's patients just diagnosed are in a pretty bad state of affairs because they let the flare up get out of control mistaking it for really bad stomach problems or food poisoning. Most people have never heard of Crohn's Disease and that includes many of those just diagnosed. It sounds like you have a pretty good grasp of your triggers. Remember, they're not all related to food/liquid. It's a complex disease that is heavily tied into the nervous system just as much as the digestive. I don't advise going off meds completely until you've really had a chance to evaluate your lifestyle and all triggers. Remission can be acheived WITHOUT Meds BUT it can also be achieved WITH it. I'm 4 years in remission and take Apriso everyday. Can I go a few days, a week without it and be fine. Sure. Do I? No. It's all about peace of mind for me. I'm comfortable with the choice to take meds daily. That might not be the course of action you want to take. That's fine, it's a personal decision but I would never tell a fellow patient to stop taking meds cold turkey after just been diagnosed (meaning <1 year). You need at least a year to get things right with yourself IMO if you want to try to manage your condition without Meds. You might be fine taking Asacol or Apriso or Lialda etc. They're all in the same group and do pretty much the same thing.
Best of luck to you
Joined Apr 24, 2016
Mon, April 18, 2016 10:12 AM
Crohn’s disease is characterized by times of active disease (when symptoms are present) and times of remission (when little or no symptoms are present). According to information in the Managing Flares and other IBD Symptoms brochure http://www.ccfa.org/assets/pdfs/Managing-flares.pdf “People with inflammatory bowel disease (IBD) must take medication on a regular basis, even when the disease is in remission. Flares can occur when medication are not taken as prescribed”.
To learn more about your treatment options read the Understanding Medication brochure http://www.ccfa.org/assets/pdfs/understanding-ibd-meds-nov.pdf or view the webcast at: http://www.ccfa.org/resources/webcasts.html .
Diet is important, but diet alone with not stop intestinal inflammation, which can lead to more symptoms. To learn more about diet check out the Diet, Nutrition and IBD brochure http://www.ccfa.org/assets/pdfs/diet-nutrition-2013-1.pdf
If you have further questions, please email info@ccfa.org or call our toll-free number at 1.888.MY.GUT.PAIN (1.888.694.8872),
Joined Oct 12, 2017
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