By the time we went to the ER, it had been about 18 hours since I had eaten anything besides one peanut butter cracker. Since food amplified my symptoms, I was not in a lot of pain when we got to the ER.
I told them that my doctor had told me to come, and of course they asked my pain level, which I have never been able to properly gauge so I think I told them something like “4”. Clearly, this response did not signify anything urgent. So, they took their time getting me into a bed and once I was all set up, they ordered me a CT scan and repeatedly asked me to provide a stool sample. I was unable to provide much of anything, though, because I did not have any food in my system.
I remember after the CT scan, one of the ER doctors came in, and he was asking me about my symptoms. I could tell by his face that he was not taking me very seriously. Although my heart rate and blood pressure spiked when they went to insert the IV, I was not presenting with any debilitating symptoms. I did not want pain meds because I did not feel that I needed them. I explained to him about how the night before I told my husband how high my pain level was, but now that my stomach was empty, I was not in as much pain.
He was very smiley and happy and telling me that they will get me some fluids and I will probably be able to go home once my bloodwork came back. As he was talking, the nurse came in and asked him if he wanted to see my CT scan. I am sure I am remembering wrong, but I just remember him being over-the-top happy. It was probably because I was so sick and tired, but I remember thinking that he did not believe anything I was saying. When asked to see the CT, he said with a big smile, “Sure!” And he looked at the screen he was given. His face went from a huge smile to a deep frown and his eyebrows furrowed. He looked up at me and said, “I’m…going to have to be right back.”
He left the room and I never saw him again. Not that I am complaining.
Within 15 minutes, four surgeons came into my ER space. They said a lot of things that I do not remember, but basically my internal organs were so inflamed they could not see clearly what was going on. I was going to be admitted and sent for both an endoscopy and colonoscopy within the next few days. They had no idea what to expect when they got in there and wanted me to be prepared that I may end up in emergency surgery if something was ruptured or punctured.
Spoiler alert, I did not end up in emergency surgery. But we talked with surgeons for several days leading up to my procedures. The days are all a blur, but I remember that at one point the Gastroenterologist who was going to be doing the colonoscopy (I loved him!) asked me if I had ever heard of Crohn’s Disease. I told him that my cousin had it, and that I had actually Googled the disease earlier in the year, but at the time I had no symptoms (from my perception) other than diarrhea. He looked at me and said, “Well, you have all of them now.” He never would confirm that I had Crohn’s Disease, but I do think he was trying to prepare me for that diagnosis.
As I said, the whole hospital stay is kind of a blur. But one part is very clear in my mind. During the prep for my colonoscopy (which was the first one I had ever had) I was so weak and so sick and was not tolerating the prep at all. I had a tiny hospital gown that was barely staying on and nothing else, sitting on the toilet the sickest I’ve ever been, crying my eyes out; and my wonderful sister was sitting there hugging me while I just got sick everywhere.
Pretty much the lowest point in my life.
But as I’ve said before, I am sooooooo grateful to be surrounded by so much love and so many wonderful people.
Finally, colonoscopy day came. I remember as soon as I woke up I asked my doctor, “Do I have Crohn’s?” And he said, “It looks very suspicious.” Again, neither confirming nor denying anything until they had all the data.
I was finally sent home on Prednisone and mostly slept the rest of the day. It was difficult for me to walk up the stairs of my house because I was so weak from not moving and not eating for several days. However, the next day I woke up with so much Prednisone energy, my husband had to remind me to keep resting. (More about my love/hate relationship with Prednisone in the future!).
That coming week, I was able to function more than I had been able to in the previous few months thanks to Prednisone. Even though I was still in pain, that little bit of relief was the first time I realized that maybe I was actually sick.
How crazy is that, right? Years of pain, fatigue and a multitude of other symptoms never made me think twice about what was going on, and instead I had ignored them. And yet it was the moment that I had an ounce of medicated stamina that made me take a step back and realize that this was real. Whatever it was that I was fighting was real. This was not all in my head.
The follow up with my new Gastroenterologist came exactly a week after my colonoscopy and the day before my 30th birthday. I remember he let me talk for about 10 minutes about how I was feeling and what I was thinking before he even said a word. And then, as if it were the most normal, expected, non-life changing sentence in the world, he said:
“So, you have Crohn’s.”
Stay strong and s m i l e.