Remission, finally...

34 y/o male.

After 4 years of disease activity, I believe I've finally come to a remission.

I was diagnosed just after my 30th birthday via colonoscopy after several weeks of bloody diarrhea. I had immediate relief from the initial prednisone taper but the oral Mesalamine I was placed on as maintenance didn't quite do the job. My symptoms returned, but far less severe. I kept on in this somewhat-manageable state for awhile, my GI provider reticent to make any big changes and instead would put me on prednisone tapers. I asked for rectal meds, which I had read about here, and was tried on a Mesalamine suppository which helped a lot, but wasn't enough to maintain.

I don't know how or why I let it keep going for another year or so like that, but I did. Then out of nowhere I became incredibly sick. I had never been so sick in my life. The ER providers told me it was likely just a flare-up, and placed me on prednisone again. I did not advocate enough for myself and wasn't tested for c-diff or parasites yet. Of course prednisone will tamp down even the craziest of symptoms, so it made me feel better all the while the C-diff was still raging quietly. It eventually was too much, and like suddenly releasing the brakes from a car where tires are spinning out, I was catapulted in to symptoms so severe that I was out of work for weeks. During that time I demanded to be tested, and came back positive for C-Diff. Oral vancomycin eradicated it handily, at least.

Things were really never the same since that. The protracted length of that illness made my UC so much worse. I was then having issues with incontinence and crapped myself at least a few times a week.. or would have accidents on the floor during my way to the toilet like a sick animal. The pain and spasms in my rectum were so intense and horrible. During this time my provider tried me on 6-MP, then dropped that after awhile in favor of Humira. All the while going through more prednisone which eventually was doing nothing for me at all.. I believe due to tolerance. I had a few colonoscopies during all of this as well, which showed inflammation still limited to the Left-side and nothing beyond that. I was starting to read about surgery.

I finally just asked my doctor if I could try enemas for awhile. Both steroid and mesalamine. He figured 'why not?' and wrote me 3-month scripts for both. I used mostly the steroid enema for the first two months or so, tapering them in to the mesalamine enemas. Finally, after about another 2 months of those.. things started to rapidly dissipate. I was worried that it'd rebound again after stopping the steroids.. but it held. It's been 9 months since I've had any symptoms.

I would never have known to ask for these sort of meds had it not been for this forum.. the expedient access to other peoples' successes with them was invaluable to me.

So thanks everyone for keeping a community like this going.

That's great you are feeling well. I honestly believe that rowasa is the most effective medication we have in the lower tier of drugs. happy it works for you.

Happy to hear you're doing so much better! It's good you pushed for the c.diff test and for the rectal regimen.

q

Same with me. These stupid doctors never bothered to prescribe any rectal meds and i came to know about enemas through this forum. I had to ask my doctor for the prescription before he could prescribe them. It was only after enemas i got better and better except for few occasional bumps but nothing really worrisome.