I was feeling pretty great back in April, but throughout May and into early June things started going downhill again. I continued with the latest infusion therapy medication (Entyvio) and reached almost 6 months on the SCD, but just wasn't seeing the hoped for results. I emailed my doctor some creative and uber dorky graphs, saying "I think its time to talk".
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| I am such a dork. |
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| Baby boy was really tired |
After the beach I cooked up some white fish with fresh cilantro and basil from my garden, and enjoyed a nice glass of wine for the first time in ages. At about 1 am Saturday, I woke up with what literally felt like labor pains. The pain was sooooooo intense and severe; I was astonished. Going to the bathroom relieved the pain partially, and I managed to sleep an hour or two more. But then the pain was back as before, I could barely stand, I was weak and nauseous, and I had a strong suspicion I needed the emergency room!
I texted my gastro at 7:55 Saturday morning, and wonderful as he is, he called me back less than 5 minutes later. He sent me to my local ER (I live in CT and he's down in NYC) with the assurance that if it were serious we could arrange a hospital transfer.
I managed to get some yoga pants on and go to the bathroom again before stumbling down the stairs and curling up in a ball on the dining room floor. My little boy crawled over to me and pulled my hair and tried to eat my face, and I loved that he wanted to interact with me and it just broke my heart that I couldn't play with him. I think I managed to kiss him back while my husband quickly packed me a hospital bag and basically carried me to the car. Thank goodness my mother-in-law was able to watch the kids!
My husband wanted to take me to urgent care so I could be seen quickly, but I knew I was too sick and would just be referred to the emergency room, so I begged him to take me to the hospital instead. He was very angry about having to wait, but I didn't care... I felt like I was dying. When we got to the ER I somehow made it through the door and leaned against the desk, where someone brought me a wheel chair. I filled out a form that said my name and checked the box for "abdominal pain", but then was told I'd have to wait my turn. Husband wheeled to a spot near the bathroom in case I needed it... and we waited. I tried to sleep folded over in the wheel chair, but I couldn't even maintain that posture... I got out of the chair and laid down on the floor of the emergency room floor. I find it very odd that no one came to check my vitals or anything... but I realize I was not the only person with an emergency. I kept thinking about how my daughter was going to miss her last swim lesson of the season - she'd been so excited to go swimming with Papi!
After about an hour of waiting, they called me into a room to check my vitals, at which point I guess I garnered some attention. I typically have very low blood pressure, but it was only 80/55, and my pulse was 135. They rushed me to the cardiac portion on the ER and started me on fluids before even asking me anything more than my name. By this point my stomach pain had backed off, but I was barely functioning. They gave me some IV anti-nausea (Zofran - GREAT STUFF) and started getting me ready for a CT scan. The emergency room doctors were in contact with my GI doc, which was great. I managed to drink the contrast solution for the CT scan and prove that I wasn't pregnant(phew, haha), and so I had a scan round 1:30 pm Saturday. They give you this strange injection during the scan that makes you feel like you're peeing your pants! but you're not... "phew" again!
The technician immediately asked me if I had a family history of Crohn's disease... I said "no, but I have colitis... does it look like crohns?" and he said "no, but it sure looks like colitis!"
An interesting thing about the drink they make you have before the CT scan is that you don't absorb it... it passes through you. Queue me running to the bathroom all afternoon hoping that my colon wouldn't explode! Also, the cardiac area of Stamford hospital's ER is as far as is physically possible from their two tiny bathrooms.
The results of the scan showed that I had tremendous inflammation throughout my colon and a lot of air in the wall of one area of my colon, which is a sign of impending perforation danger. The doctors were pretty sure that a total colectomy (removal of my large intestine) was the only reasonable option for me... so we arranged a transfer from Stamford Hospital down to Mt. Sinai Medical Center in NYC so that I could be with my GI and my mom's colorectal surgeon - they're considered the best of the best!
After we started arranging the ambulance transfer we also found out that I was positive for c.diff (clostridium difficile), a super pain in the dupa bacteria that lives within us all, but can be very damaging when it gets out of control. Because of this, I would need to have a private room in any hospital - yay silver lining of privacy, Booo hours and hours of waiting for them to figure out a room for me in a very busy hospital. I finally arrived in the NYC hospital around 11 pm. Long day!!
There is so much more to this story.... I think I'll call this "part 1". And I'll write a whole post about "ER entertainment"!
ERs are so dreadful - waiting to be seen when you were in pain could not have been easy. But I'm so glad you DID go to the ER and not the urgent care!! They definitely would have pawned you off and then you'd have waited even longer. What a day Liz....yikes!
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