No meds?

Hi, I have had small bowel Crohn's since 1998. I have tried every medication including biologics but nothing sees to help. So, a few years ago, I stopped all meds. It doesn't seem to make a difference in the course of my disease. I did have my one and only resection 2 years ago. I am now 66. Has anyone else had a similar situation where they are not taking meds?

Hi Rattytatty, are you having symptoms now? I've seen a few people have a resection & go medication free. They quit posting here so I have no idea how long they stayed med free.

I had a resection & was not able to go med free. When were you last scoped? Be sure to keep an eye on things.

I was last scoped about a year ago. I don't experience much pain--just intermittent diarrhea. Note that my resection was in late 2016 after having Crohn's since 1989. There are so many side effects from all the meds and since they don't work, I can't see a reason to keep trying. I have had gastroenterologists get angry with me for refusing drugs but I honestly don't see the benefit outweighing the risks of the side effects.

Rattytatty, I'm 50 years old and was diagnosed at age 9 in 1979. Had a small bowel resection in 1983. Took Sulfazalazine for 2 years and then didn't tell my parents that I stopped taking it for over a year. I admitted this to my Gastro Dr. at the time and, still being in remission, he said, you're done with meds. I remained in remission for over 25 years. The Crohn's came back strong at age 39 at the beginning of my divorce. 2 years later I started Remicade which worked for about 1.5 yrs, then stopped working (no antibodies though). I also had some nasty side effects like high blood pressure which went away a few months after I stopped taking it.
I am not in remission, but choose not to take any meds. My disease is mild to moderate. I've had 3 scopes in the past 10 years, most recently in March of this year. I do have further (now significant) narrowing at the site of my anastomosis. That's the usual place the narrowing occurs. I'm considering meds again but knowing me will not take them. So I'm looking at a resection in the new few years. If I made it over 40 years without another resection, I think I did well. Of course, none of us are the other person and react differently with this disease and with the meds. Most on this forum are huge proponents of meds. There seems to be a lot of threads that mention damage being done on a microscopic level. I'm sure that's true and I respect their views. I've done well with the odds and happy with my choices. I hope you find peace and healing in whatever direction you take.

I'm taking medication now, but when I had an ileostomy I wasn't on any medication. In fact it was the only time I had any respite from this wretched disease. It came back upon reversal of the stoma and I was on Entyvio for 2 years and am now on Stelara. It doesn't seem to be making much, if any, difference. My GI back in March wanted to do a follow-up sigmoidoscopy in 3-4 months and then refer me to a surgeon if there was no improvement. But Covid has thrown everything out of the window and I almost certainly won't be getting any elective procedures done this year.

I'll carry on taking Stelara in the meantime. But if I do go back to having an ileostomy (which would be permanent this time), I'll probably go med-free again. I've had Crohn's for 20 years and nothing has worked.

I had a dr take me off of meds in 2018 cause he insisted i didnt have crohns. Even though a colonoscopy in 2014 confirmed i did. A new doctor put me back on the same meds but its not working. I now have to go in for a CT scan to see if i have an abscess or a fistula forming. Im in a great deal of pain now. My scan isnt until next friday. Im glad you had done so well for so long without meds.