New poster , old disease..

Hi all,
I'm wondering if some of the more experienced people on here could point me in the right direction as how I should proceed with my crohns. It just seems I cant catch a break from it. I'm 55 yo and I've had crohns for about 7 years. It started off after I quit smoking. I was a long time smoker up until that point. My first flare was pretty bad with lots of blood and restriction. I was given some asacol and it started clearing up within a few days. That was probably 12 flares ago. That treatment doesn't work anymore.
Now I get them two to 3 times a year and they last months and the only thing that eventually gets rid of them is steroids. I actually started smoking again and went awhile without a flare and then I quit again and bam. Two months later another major flare.

My biggest concern is about 2 years ago I had one so bad that it affected my entire colon and I felt as though I was dying. I had slurred speech and was basically bedridden for 5 months or so. I had become incredibly weak.
Went to ER and basically was on steroids for awhile and finally recovered months later.

Now its back again and its been flaring for about 7 weeks and I've been on steroids for about 2 weeks. No real improvement. I was also able to get some apriso and I've been on that as well but it doesn't seem to help much.
I had a colonoscopy about a year ago after last flare and they said I was OK except for some underlying inflammation. No cancer etc.. Just a couple of benign polops.
What seems to happen with me, is the flare will start off very slow. Just a drop of blood and maybe a bit of puss. Then I will fight it with stricter diet, more mesalamine etc. This will go on for weeks. Eventually it will always get worse with more restriction and more blood till its out of control. Then I'll be on the pot 15 times a day with alot of blood and little stool. Just trying to get out as much as possible. The colon swelling seems to all but close off the rectum.
I dont have health ins so I've not been able to try any immus or biologics as they are cost prohibitive. I'm with the dept of health now and all they can do is a bare minimum for me although I appreciate everything they have done.
So what is it looking like for me? Will I have to lose my colon? Should I do everything possible to try and get something like remicade etc?
I really feel like I'm running out of options.

Thanks in advance, Billy

Are you sure you have Crohn's and not UC?

The way you describe smoking having an impact - it started when you quit smoking, got better when you started smoking again, then worsened when you quit smoking again - sounds more like the typical UC pattern than Crohn's.

Smoking usually makes Crohn's worse, and quitting smoking usually helps. But with UC, smoking sometimes helps, and quitting smoking can make UC worse.

As for the meds, I agree with 73monte.

73monte said...
I think you need to do everything possible to get the necessary coverage for some advanced maintenance meds. At your age, I wouldn't hesitate to go to a biologic, Remicade being the most preferable. Mesalamine is vitually useless, and considered antiquated therapy now. Going on and off of Prednisone will do more harm than good in the long run. You absolutely need a maintenance med that will keep the disease at bay, and stop it from doing damage. At the very least you should try an immunosuppressant like Imuran/6mp, or Methotrexate. I'm in Canada, so can't comment on how your HC system works. Hope you make some progress.

Thanks so much for the advice. Yes, mesalamine has basically been useless for me the past few years.

joejo said...
I am also new to crohns and had trouble getting my insurance to cover Remicade or Humira. Now I have it covered.. I did contact Janssen Pharma and they offer patient assistance. You may be eligible possibly. I was denied but you have a better chance then me… I did get patient assistance for Pentasa which was free and mailed to me monthly

http://www.janssenprescriptionassistance.com/remicade-cost-assistance

also Humira has a patient assistance program for those not insured or not making a certain amount that you can check into.

Thank you. I appreciate it. Hopefully I can make it happen. These huge flares are going to eventually kill me.