The fear of going under . . .

I just had a good cry, I should sleep very well tonight!  I was watching a show called Code Black, thinking it was a typical ER drama I had it on my TV as background noise to tune out Ms. Godzilla that lives upstairs (can’t wait until this lease ends!). As I was barely paying attention to the main story in this episode; a young cop having an explosive lodged in her leg, for some reason the story of the woman who went to the ER alone because she wasn’t feeling well caught my attention. She didn’t look ill, but why would she be in the ER? I thought to myself, I can relate! The day I went to the ER I remember my outfit vividly cause I thought it was cute and it was one of my best hair days lol, I didn’t look sickly at all. Minutes later she’s in a hospital bed stating it was difficult to breathe and fussing with her brother. Her brother asked if she was really sick, she responded I wouldn’t be here if I wasn’t and then she mentioned it was her Lupus. . . I slowly put my laptop to the side and gave the show my full attention. It’s rare when television shows discuss invisible illnesses such as autoimmune diseases so I was weirdly excited.

The episode returned back to her story by discussing her CT Scan results. The doctors stated she had a Pulmonary Emboli?!? I think. The blood clot on her lung was so big they had to rush her to surgery. The fascinating thing about this episode is that woman with an explosive bullet in her leg survived, but not this woman with Lupus. She died . . . and I started crying. I don’t know how realistic this story could be but, she went to the hospital with a chronic illness and she knew something was seriously wrong. It’s a scary feeling right? When I went to the ER I knew I could no longer eat anything, but I didn’t really think of the risks with medical procedures, but anything can happen whenever you go under . .

I have always hated hospitals, my favorite uncle died in a hospital when I was a teenager. Being in a hospital have always been a fear of mine ever since his passing.  When I  had to get my gallbladder removed at 25 I was terrified. I remember asking  my co-worker who was a minister to say a prayer for me. We were literally praying in her office. Before my first colonoscopy I said a prayer, when I was in the hospital I prayed hoping that, that night was my last night in the hospital. Every time I go under I say a prayer, you just never know and it’s odd I’m no longer terrified, I just hope for the best. When you have a chronic illness having multiple medical procedures become routine unfortunately.

I finally sought a 2nd opinion, found a GI in my new home state of Virginia (even though I’ve been living here for 8 months now). He immediately didn’t understand why I was taking Apriso and Humira, and told me to stop the Apriso. Thank God! I had stopped taking it weeks ago and it saves me $25  a month. But of course he wants to do a colonoscopy, got it scheduled for Dec. 29th. Third year in a row I’m having this procedure done before the New Year, it’s becoming a tradition. Since I had a flare up a couple of months ago when I’ve been on Humira for over a year, he wants to know why . . sighs . . once again I’m going under . . and plan to say a little prayer and hope for the best.

Discharged! :) . . . .

I was finally discharged yesterday after almost 5 days in the hospital. I’m glad I left when I did for my psyche, because I had not reached cabin fever yet, and was still slightly uncomfortable “living” in a hospital.  I got along with the nurses and the food staff, helped out new patients in getting their toiletries, and was very comfortable walking around in a gown while pushing my IV . It was becoming a normal routine, it was scary.  My first ever hospital stay was an adventure.

The ER is horrible, and I believe the nurses looked just as miserable as I felt. When I “checked-in”  I had to tell the nurse at the front desk why I was there and my symptoms. I told her I have Inflammatory Bowel Disease and going through a bad flare-up.  I have bloody stools, cramps, on several medications including prednisone, and my GI told me to come. She gave me my papers and told me to sit in the waiting area. As I sat down, I immediately became irritated when I read what the nurse wrote “On prednisone, IBS” . . .  . . I didn’t realize that irritable/inflammatory and syndrome/disease were the same words??!?! .  . . . .I was sooo mad and felt disrespected, I was very surprised by my reaction.   So when they called me back for  an EKG and blood and urine samples, I quickly corrected them and stated I have IBD not IBS, they are NOT the same!

I was sent back to the waiting area and sat for another 3 hours and quickly noticed how crowded and uncomfortable the ER really is by being surrounded by crying babies and foul smells coming from the 1 restroom! Thank goodness I barely ate that day and did not need to use the restroom. When my patience was wearing thin and I started to think they forgot about me, I was finally called back. They put an IV in my right arm (worst place to put it!) and then told me to change into a gown. An hour later I saw the ER doctor, she tells  me my blood work looks fine and we can send you home tonight. I looked at her like she was crazy and immediately thought, I did not waste 5 hours of my day in this horrible ER to be sent home because my blood looks good!! In my best attempt in a calm voice I told her, “I have called out sick this week at work, barely worked a half day today,  and if you send me home tonight I’ll  probably be back here tomorrow, so I would suggest that you get in contact with my GI since he told me to come to the hospital, so please check, thank you!” 45 minutes later she returned and told me I was being admitted.  She got in contact with my GI who told her that I needed to be admitted because we need to find out why the meds are not working. I had never been so excited to be admitted, I was just glad to no longer be in the ER.

Unfortunately, after almost 5 days in the hospital and seeing 3 different GIs, none could agree on my diagnosis. After a CT scan, scopy procedure which included my first experience with an enema, HORRIBLE! and my blood being drawn everyday, the only thing that all 3 can agree on is that I have active Inflammatory Bowel Disease and that’s its not severe. It’s frustrating to still not know, but my symptoms have gone away, so I’m happy. My pill intake has decreased from 14 to 8 pills, and now taking 40mg of prednisone daily. . . I’ll take it.  I have a follow-up appointment with my GI in two weeks and I am very curious to know what will be the next step in my treatment.

IBD is a crazy disease!  My case is not considered severe, but it put me in the hospital for 5 days?!?!? That’s kinda crazy.

I remain hopeful, and taking one day at a time 🙂