Another visit to my G.I. doctor earlier this week. Trying to get this pouchitis thing under control, it’s been rough. Woof.
I’m not responding as quickly as he would like on the cipro and flagyl, so he started me on another course of treatment. Which includes: prednisone. Great.
Also started me on a 5ASA called Cansa which are suppositories.
I made my way over to the closest pharmacy from my work to pick up my new meds. Canasa isn’t covered under our insurance, which I thought was weird since my dad is a doctor! 24 suppositories of Canasa will run you roughly $800, just an FYI. I wanted to cry when the pharmacist told me I had driven all the way there, waited a half an hour and couldn’t even get my medicine. I had felt so bad that day I had a breakdown in my car. Why is this happening again? Why am I in so much pain and agony because of this disease again? Why can’t I eat, go out, live, have energy, enjoy my new job? I thought surgery was supposed to fix all of this?
Now, I’m not one for complaining or feeling sorry for myself. I try to have a pretty positive outlook on everything IBD related. But having colitis for 2 years, going through a year of surgery and now having pouchitis is a little much for me to handle.
I’m exhausted all the time, dehydrated, and my nausea, as I’ve said before, is insane. I’ve lost my appetite and am down about 8 pounds. I’m fitting into my skinny-sick jeans, which my mom reminded me at dinner is not a good thing. (But it is fun to fit into smaller pantsJ don’t kill me for saying that).
Today, my body is aching all over again. My joints in my wrists, fingers and especially knees are in so much pain. I figured it’s probably from the start of a steroid and the inflammation in my body. My back hurts and feels like I threw it out a little again, like I used to when I had colitis and would strain so badly when going to the bathroom.
When I do go to the bathroom, it’s almost all complete water. Trying to make up hydrating with no colon is tough enough, let alone rehydrating for not having a colon and CONSTANTLY losing fluids. Thankfully my dad will give me another IV tomorrow morning and I’m getting a massage to try and ease the aches a little.
I’ll also be laid up with my heating pad again and probably taking countless baths over the weekend.
In order to get this little situation I have going on under control, I’m making a visit to Dr. Lashner (Cleveland Clinic) on Monday afternoon. My surgeon won’t call me back, which is fine, because he wouldn’t really know what to do with pouchitis anyways. Dr. Lashner is apparently the pouchitis expert. I met him when I was first diagnosed in 2012, right when I started Remicade. I had experienced a close to remission state at that point, so he wasn’t too taken aback by my numbers at that point.
Can’t wait to see his reaction on Monday when I tell him my C-Reactive Protein level was at a 95 right before my first surgery.
I also can’t wait for this pouchitis to clear up. Until then, I’m trying to do the best I can to follow all the rules of IBD’ing again:
- No sugar or treats, which is SO hard for me!! I love treats!!
- No food that tastes good.
- Carbs, carbs, carbs
- Tons of G2
- Taking all of my medicine (which is back up insanely high again)
- Making myself eat in general
I told Kristin the other day as well, who is having her take down surgery at the end of August, to NOT get a new job or do ANYTHING for at least 6 months. I pushed myself too hard after surgery. Too much stress. Too much change. But I wanted to get back to life. I thought I would be fine. I thought I could do it, I thought things would only get better from my take down date.
Man, was I wrong. I should have given myself more time. I should have slept for 3 months. I should have not been in in such a shitty relationship where the other person caused me so much pain, stress and anxiety. I probably shouldn’t have moved or gotten myself involved in a career.
Do I regret those decisions? ABSOLUTELY NOT. But I am now living life with IBD again, so it’s tough, but I’ll rally.
Whenever I feel really bad, I try to tell myself I was bartending until 4 a.m. 5 nights a week when I was basically dying, so I can do anything now, right?