Just wanted to introduce myself and hopefully get some more insight/thoughts on my case. Here's some background on my journey so far. I'll try to keep it short and to the point, I know everyone on here has read so many of these stories.
- Diagnosed at 21 with UC (mild case from what my doctor told me/what we saw on the colonoscopy) - shortly after my junior year ended in college
- Had the disease in remission with Lialda and VSL#3 - stopped using the VSL#3 because I thought it wasn't doing much and pretty much ate/drank whatever I wanted - shocker, I went into a flare.
- Had my ups and downs with minor flares for a couple years - nothing too crazy, always seemed to get out of them with a course of hydrocortisone enemas or Uceris. It always seemed to happen around finals time but I still think it was random. Avoided prednisone at all costs. This got me through my undergraduate years and then I went on to do my masters. Near the end of my masters program, a flare was starting...
- I purposely took about 6 months off to study for my CPA (passed them all - so glad that is over) before I started my job in January of 2015. I guess the timing worked well for a flare to start so I could hopefully get it under control before i started my career in public accounting.
- I tried to get out of this flare without prednisone but to no avail, I needed it. It took me around 6 months or so of prednisone/hydrocort enemas to get out of the flare and I began using azathioprine (100mg). All was good - I was in remission, moved into my new apartment, passed my CPA, ready to start my career! But I hated being on azathioprine - always have hated that it's a disease we can't really treat, just have to keep it at bay.
- I went on for 6 months living life normally (once again, not keeping my diet in check as I should have), taking my Lialda, VSL #3, and azathioprine. Around the end of May 2015, I started having symptoms again.
- And here I am, back on prednisone, upped azathioprine to 150mg (which hasn't helped at all) and am using hydrocort enemas again. Still battling the flare. It's definitely been weighing me down - it's extremely difficult to focus on work while having a flare. The next step is humira/remicade. I really don't want to go on these.
Surgery has been a thought that has crossed my mind but I never really gave it a serious thought until recently. I have an appointment scheduled with my GI in the next couple of weeks and I'm hoping to get his insights on the matter. I'm also hoping to hear back from the Mayo Clinic about setting up an appointment (I'm in AZ - does anyone have any surgeon recommendations? I'm trying to explore all my options surgeon wise). I'm still on the fence about whether or not I want to do the surgery - a j-pouch is definitely the way I want to go if I do have the surgery. I've been scouring these forums like a madman these past couple days to gather as much info as possible and it seems like most people do live normal/good lives. The fear of the unknown is what really bothers me and there's obviously no way around that.
This disease has definitely been a rollercoaster ride. The hardest part is the feeling of that the disease is holding me back from being the person I want to be. It's difficult being 24 and trying to explain to people what is going on in my life. They won't understand - and I don't really expect them to. My family has been really supportive which has been great but this decision is ultimately mine.
End rant/story - thanks for reading.