For those flaring for years.....

My dog is on cyclosporine. It's available for dogs pretty easily. I got it from the vet and I administer it at home. Isn't it interesting how you can get the canine version like no big deal, but i need a hospital stay to get the human version? The stuff he takes is made by novartis, it's called atopica. it's really helping his inflammatory skin condition.

Marauder93 said...


They say its because they dont think the evidence is there for it (which is total BS based on the 30 most significant papers I reviewed from 1990-today)but the truth is they just dont have the experience to use it. US docs DO have that training and are experienced enough to use such a dangerous drug. This will change in 8 years when Im able to open my practice here in Ontario though

Let's just hope that 8 years from now there is something much better for UC than Cyclosporine, maybe even a non-surgical cure.

ks1905 said...

Marauder93 said...


They say its because they dont think the evidence is there for it (which is total BS based on the 30 most significant papers I reviewed from 1990-today)but the truth is they just dont have the experience to use it. US docs DO have that training and are experienced enough to use such a dangerous drug. This will change in 8 years when Im able to open my practice here in Ontario though

Let's just hope that 8 years from now there is something much better for UC than Cyclosporine, maybe even a non-surgical cure.

Agreed, there are a number of things coming down the pipeline, though none are as potent as the cyclo

Cyclosporine is a 'rescue' med, used in cases where IV steroids have failed, not a long-term treatment. IV steroids always kicked in for me, so I never got a chance to try it, but I don't think it would have saved me from surgery. Frankly I agree with ks: I too hope in 8 years' time there is something considerably better. Fed up of meds which don't work for me.

As for the original topic question, I coped with flaring for years because I had no choice. I was diagnosed in 2000, flared straight for 13 years until my first surgery. It wasn't too bad for the first 5 years, but after that it just became progressively worse. I had severe pancolitis. Later on, I developed a stricture in the terminal ileum and became prone to obstructions - that was fun too. To be honest, in some ways it was easier to cope while I was at my worst: I was so debilitated I rarely had the energy to rage or cry at the universe. But once I had surgery in 2013 and was put into remission for the first time, the floodgates opened. Two horrible withdrawals from pred and oxycodone exacerbated my depression; during that time I was also diagnosed with a funky new autoimmune condition, Hacrapmoto's disease, so that may have contributed to my depression too.

Other bad stuff went down between 2013 and 2015, which I don't really want to go into; suffice to say I never really had a chance to enjoy my remission before it ended with a second surgery and a reversal of my ileostomy. The Crohn's came back immediately; not as severe as it was before, but proper miserable without a colon to at least minimally retain stool. A year on, I can hold things in better now (though still get toilet anxiety if I stray too far from a toilet in public), but my digestion is completely borked. I'm not at all convinced if I went into a full histological remission tomorrow, my digestion would go completely back to normal: I reckon there would be residual IBS/disordered peristalsis going on. But on the other hand, I did have an excellent 2 weeks on 9mg Entocort, so I dunno.

I'm starting to ramble now. The honest answer I don't really know how I cope. Meds don't work, meditation doesn't appeal. I'm left with stumbling through life, trying to hold onto what's left of my remaining few marbles. I proper rage at the universe at times. At other times I'm almost in a state of disbelief that I have to live with this utter nonsense for the rest of my life. The rest of the time I'm in denial or something, idk. I wouldn't say I accept my condition gracefully, but it might be easier if I hadn't also been 'blessed' with a lifelong curse of depression/anxiety/autism (the autism is mild but still has profound and far-reaching effects).

Sorry, this was a bit more depressing than I intended it to be. All I can say is I'm still alive and still here, I suppose! For whatever that's worth.... >.>