Life is precious. . .

Last week I went to my great aunt’s funeral. She was terminally ill and bedridden for the last ten years of her life. After surviving a stroke, she could no longer speak and eventually lost her battle with cancer. It was hard for me to visit her because growing up she was such a boisterous woman and to see her so fragile, it saddened my heart. I believe that the last 10-15 years of her life would have been more pleasant if she received proper care/treatment, but insurance is a bitch. After her stroke, once her insurance no longer covered physical therapy she stopped going. When she started chemo for cancer, her body could not handle it, so she stopped treatment.  She was suffering for a long time and like many of my family members, we were sad but relieved that she was no longer in pain.  At the funeral, one of my cousins spoke about the last conversation she had with our aunt before she became terminally ill.  My aunt told her, “if you don’t feel well, get yourself checked out, don’t ignore it.”

Those were some powerful words. You have to take care of yourself. I know having Crohn’s will always be a battle, but my goal is to live the most comfortable life as possible. I am grateful for the insurance I have and even though my GI drives me crazy, I am grateful that I have been seeking some type of treatment. There are different treatments for IBD, and standard drugs (Aminosalicylates & Corticosteroids) is my first choice. Has it worked so far? No, but hopefully biologics will work *fingers crossed* You can only live one day at a time, trying not to stress thinking about the future.

Remaining hopeful.

Hospital follow-up with GI . . . .

I saw my GI on Monday for my post hospital follow-up. I think my GI is a hard working man, he looked just as tired and stressed as i was or maybe because it was an 8:00 am appointment? 🙂 Anyway, he reviewed my clinical summary from the hospital and was surprised that the hospital GI removed Apriso from my medications.  Since it was the only mesalamine medication I was taking, he stated we will need to put you back on that medication.  I immediately asked why since the GI at the hospital stated it didn’t work. He responded, “I think you have Ulcerative Colitis, and you’re currently taking 40mg of prednisone, I want to get you off the prednisone sooner than later.  We need to do a trial and error and find your long term drug.” So far 2 out of 3 say I have UC , I feel like I’m getting closer to a confirmed diagnosis, yay!!

Then we talked about future treatment. He brought up Humira and  Remicade again, but stated he wants to try an immune modulator instead. In the meantime he wants me to get tested for Hepatitis and see me every week?!?! I said “What!” He said we have to tackle this head on, I don’t want you to go back to the hospital.

Sighs . . it’s bittersweet. I’m fortunate to have a GI that cares, but my PTO hours are getting low. And I can’t afford these co-pays, but I am getting closer to my out of pocket maximum with Cigna!! So once I hit that amount it should be easier? *fingers crossed*

As always I remain hopeful, taking one day at a time 🙂

Steroids?!?!? . . . misdiagnosis?!?! . . Huh?!?

I swear “Aunt Flo” visited and stayed for the entire month of February. I was extremely bloated and eating everything in sight, and of course my clothes started to fit tighter.  I just assumed I’m pmsing, and because the weather has been horrid lately, I’m just no longer active. So it makes sense that i might have gained weight. I do not know for sure because I do not own a scale and refuse to buy one! But what made me raise an eyebrow was the day I could not remove my rings. I recall standing over the sink lubricating my finger with lotion and whatever else I could grab to get the rings off my finger. After 20 minutes I was successful. I know having an IBD your weight will always fluctuate, and at times it is difficult to gain weight, but never have my hands swell. It raised a flag . . .

Yesterday as I was preparing like it was a job interview for my appointment with my GI, I logged into my patient portal to review the summary of my diagnosis and list of medications. The one good thing about the Capital Digestive Center is that every patient is provided a log-in into the patient portal where it lists your medical history, summary of your past appointments, scheduled future appointments, and your current medications. While reviewing this information I’m writing my list of symptoms, questions to ask, concerns, etc. and then I decided to Google my medications. My most recent prescription is Budesonide. As I typed Budesonide,  the first thing that pops up is that it’s a steroid. Well got damn! How am I just discovering this . . . why was I not informed?!?!? I mean maybe this is the reason why I’ve gained weight recently, right?

I don’t know how to react because I’m upset that I wasn’t informed, but I will admit ever since I started taking Budesonide I have felt better, and some symptoms have gone away.  I do recall my GI stating I will be taking this medication temporarily, but I still should have been informed. After reading other IBD blogs and forums it seems like many prefer Budesonide over Presdione aka “the devil”, the name many called it.  But what raised another flag was that this drug is usually prescribed for people that have Crohn’s disease . . . so which IBD do I have?!?!? I was told colitis, but since Budesonide has improved my condition maybe I have Crohn’s. . . UGH!! . . sighs . .

This has been the most frustrating 3 months ever! lol I feel sorry for my GI, I have a lot to say when I see him.  . .