It's been a little while since my last post...mainly, I think, because there has been so much swimming through my head that's it's been difficult to decide what to write.
I had a check up with my GI about a week ago and things could have been better, but then again, things could be a lot better with my health. I've been dealing with a "flare" since late February and it's really begun to drain me. We've tried a couple different meds (Uceris, Asacol HD) and even had a blood test done to determine if Remicade is still working and to make sure my body is not developing antibodies to the medication (based on the test - it should be working and my body is not making antibodies). Finally I had to start prednisone again in March. Usually once I get bad enough to go back on steroids I can count on things getting better within about a week or so and starting to taper off them fairly quickly. Not so this time...
It's been over a month and I'm just now seeing a difference in my stool and only have had about 4 consecutive days with no blood loss. It seems like my "flares" are getting worse, more frequent, and harder to get back under control. Because of this my GI ordered another colonoscopy to take place next week so he can physically see how my disease has progressed in the past 2 years since my last colonoscopy.
We also had a little surgery discussion. He told me what we would do - if we did it. A total colectomy since I have Pancolitis. He would also like to have my spleen removed at the same time to try to help my ITP. I would then, at a later date, plan to have a J-Pouch created. I've done EXTENSIVE research on these surgeries including delving into the lives of those that have been through it and are generous enough to share their personal stories with other through various online forums. While the thought of permanently removing a vital organ is not something I want to take "lightly"...I also have to think about my quality of life going forward.
The last 2 years since being diagnosed have been quite interesting. I've spent a lot of time adjusting and really just trying to figure myself and my body out. Can't say that I've gotten there completely yet and the addition of high doses of steroids dose not help the matter. Anyone that has been on high doses (40mg per day or more) of Prednisone for a substantial amount of time can tell you that it's all most people can do not to let it ruin their life. I told my Mom the other day that this drug, in a nutshell, does everything possible to make you repulsive to other people. When I'm on it I get bloated, my face gets red and fat, I sweat constantly therefore I stink constantly, I have crazy mood swings, I get acne, I get body hair, I get terrible insomnia therefore during the day I am groggy and exhausted, I get jittery....and the list goes on. The fun part is even after Asacol, 6mp (scary toxic drug that can cause cancer) and Remicade (scary toxic drug that can cause cancer #2), I still have to be on steroids all the time..I flare, I start Prednisone, it takes me about 4 months (usually at least) to taper off them and another couple months to feel like the drug is out of my system and AS SOON as I start to feel like a somewhat normal person, I start to flare again and have to get right back on them.
This is the basis for the surgery talk and my pondering on "Quality of Life". I see so many people that have had their colon removed and are now living happier and healthier lives than they have in years and can do things that they couldn't even think of doing and I just want that so bad. I just want to feel good. I haven't felt good in so long I honestly can't even remember what it feels like...
I'm 29 years old, yet most days I feel like I'm in my 50s or something. I also get joint pain from the chronic inflammation in my body so, add that to the pile I guess.
I don't know. I'm interested to see what my colon looks like next week and what my doctor will have to say after the exam...until then, there's nothing left to do but think about it.
