New here, have UC

[chejosh]

Hi! Since I apparently can't post in the UC-specific forum without posting here first, here we go.

I was diagnosed with UC when I was around 10 years old, can't quite remember exactly. I'm 26 now. It's always been sort of mild, I've never had terrible symptoms. The worst I get is diarrhea, and never with any blood.

I've tried a lot of different medications. I remember being on sulfasalazine when I was first diagnosed. When that didn't work, I got put on prednisone and asacol. The asacol never helped, anytime I tried to go off the prednisone, I'd get diarrhea again. I've been taking prednisone for at least a decade now, a small 5mg daily dose. Last year, I brought up concerns to my doctor about being on it for so long and he gave me imuran to try. Well, the imuran caused me to get pancreatitis and landed me in the hospital for a couple days. So, I'm back to the prednisone.

The prednisone keeps the diarrhea in check as long as I don't get into any stressful situations which is nearly impossible.

So, yeah. That's that, I s'pose.

 

[xJillx]

Hi chejosh and welcome! I can understand your concern for taking pred for so long. It really should not be a maintenance drug. However, 5mg is quite low. But have you considered getting a second opinion? Perhaps cortisone enemas could be another option. It's not an ideal method to deliver medication, but it is much safer than oral pred. It's a topical treatment and only 10% of it is actually gets absorbed into your system.

 

[ameslouise]

Hey Chejosh and welcome!

Sorry to hear the meds aren't working for you. Your doctor should be pursuing other treatments instead of keeping you on the pred for so long. Some UC patients have had good luck with Remicade. Have you discussed J-pouch surgery? I know surgery sounds extreme, but if you are a candidate, it could be worth looking into.

Press your doc for other options, or maybe it's time to seek a second opinion.

Good luck! - Amy

 

[RFarmer]

Hiya Chejosh! Welcome to the forum!

Do you and your doc have any specific plan for the future to get you off the prednisone? And yeah, stress is THE WORST... I find it's like eating a whole tub of icecream. blech.

Nice having you here

 

[chejosh]

Hi chejosh and welcome! I can understand your concern for taking pred for so long. It really should not be a maintenance drug. However, 5mg is quite low. But have you considered getting a second opinion? Perhaps cortisone enemas could be another option. It's not an ideal method to deliver medication, but it is much safer than oral pred. It's a topical treatment and only 10% of it is actually gets absorbed into your system.

I'll probably be moving soon which will force me to switch doctors anyway, so we'll see what they're thoughts are when that happens.

Hey Chejosh and welcome!

Sorry to hear the meds aren't working for you. Your doctor should be pursuing other treatments instead of keeping you on the pred for so long. Some UC patients have had good luck with Remicade. Have you discussed J-pouch surgery? I know surgery sounds extreme, but if you are a candidate, it could be worth looking into.

Press your doc for other options, or maybe it's time to seek a second opinion.

Good luck! - Amy

Originally when I was prescribed the imuran, I wanted to ask about the remicade or humira, but at the time I don't think either were FDA approved for UC, only Crohn's. I'm not sure if they are now or not even.

Hiya Chejosh! Welcome to the forum!

Do you and your doc have any specific plan for the future to get you off the prednisone? And yeah, stress is THE WORST... I find it's like eating a whole tub of icecream. blech.

Nice having you here

After being on prednisone for around a decade, I think there's clearly no plan for getting me off of it. When I spoke to him about my concerns last year (when he gave me imuran to try), he told me that he wasn't really worried because it's such a low dose.

But, I'm fresh out of graduate school and looking for a job which will likely take me out of the area, so I'm going to be forced to get a second opinion.

 

[Jessi]

Hi and welcome! I have UC and I am on Remicade, so yes, it's been approved. Humira has been also. I really hope you find what's right for you!