My Crohn's Disease Diagnosis Story Part 2

Updated: Apr 6, 2021

By early July, however, I called the GI office and told them that I could not wait. I needed to get in earlier. They moved my appointment to early August; it was the best they could do. So it seemed I had no choice but to wait...

In mid-July I had a 3 day convention that I was supposed to attend. The Wednesday before the convention, I was out shopping with my mom and I remember that I wanted to enjoy shopping so much, but I was in so much pain it was difficult to focus or make simple decisions about what clothes I liked. Talking to my mom later, she had no idea I was in that much pain because I faked it so well.

There were other things going on by that point too, that I was pretty much ignoring. I was spiking fevers every single night, I was losing hair, and I had lost 20lbs in a month. Everything I ate made me sick, and my body ached constantly.

On Thursday, the day before the convention, I had been at my school doing some pre-board clinical work, and I couldn’t make it through the day. At noon I went home, and this was the first time EVER that I had let my pain stop me from anything. It was at that point that I called my PCP and told him that I could not make it through the day and needed to be checked out. The only appointment they had was Friday morning, so I would miss the first day of the convention. I was disappointed but my mom and husband encouraged me to take the appointment.

My husband went to the convention, so my mom took me to my appointment on Friday morning. My doctor asked me about my pain level, and I told him it was not excessive, I was just in my normal amount of pain. My mom jumped in, “Do you hear that?!” My PCP, who had known me for 13 years, said, “yes, I heard that.” Apparently having a “normal amount of pain” wasn’t actually normal?!

He ordered more blood work and a stool sample (so gross!!) and that was about it. I love my PCP, and I truly think that most doctors really have their patient’s best interests at heart. But diagnosis is such a complicated and often lengthy process. And plus, I often think as patients and especially as women, we tend to minimize what is actually going on because we either don’t want to cause an issue, or we aren’t even sure ourselves how serious it is until someone else tells us.

The rest of Friday I slept, ate, and went to the bathroom. I ate very little and very bland, because each time I ate, the pain was nearly unbearable. Friday evening, my doctor called with again that good/bad news – I had a Clostridium difficile infection, or C-Diff! C-Diff is a bacterium that can cause an infection when there is too much present in the intestines. Symptoms include severe abdominal pain, fever, and bathroom urgency. My doctor made a point to say that, although this was an acute infection, it didn’t rule out that I may have something chronic going on, and he still wanted me to follow up with the Gastroenterologist.

C-Diff can be extremely contagious, so that ended my plans for the weekend. I was put on heavy antibiotics and I HOPED that this was finally it!! I had all of the symptoms and it could possibly explain away everything.

Obviously, it did not. The antibiotics did, what appeared to me to be, nothing. After resting Friday-Monday, Tuesday I got up and went in to my school for a day of clinical work. I pushed myself through the whole day, and came home to crash. I ate what I considered to be a bland meal, and instantly regretted it. I told my husband that if I was to go to the hospital right now, I would tell them my pain was an “8”. He urged me to go, but I did not want to. I knew I had C-Diff and I knew that I was only half way through my antibiotics, and I just wanted to wait it out.

The details here get a little fuzzy to me, I think because I was so sick that I just forget a few things. But I know that on Wednesday after some sort of communication with my doctor, he sent me for a chest x-ray and a urine test. My husband was working, so my mom took me to the hospital for the chest x-ray. As we sat waiting for the test, I received a call from my PCP’s office. I went out into the hall and my doctor’s nurse told me that considering it had been 6 days on antibiotics and I was still in so much pain, he wanted me to go to the ER. We hung up and I came back into the waiting room with my mom.

I sat down very calmly and said, “The doctor wants me to go to the ER. But do not tell Greg (my husband) that, because I am not sure if I am going to go.” My mom agreed, but I can’t imagine what was going through her head at the time.

Right before I went in for my x-ray, a nurse who has been a close friend to our family and that I’ve known my entire life came out to the waiting room to see us. She happened to work in that department and asked what was going on. I told her how I had been feeling and then they called me back for my x-ray. I remember thinking to myself, ‘I know I told my mom not to tell anyone that my doctor wants me to go to the ER, but I really hope that she tells our nurse friend and gets her opinion.’

I had my x-ray, I came back out to my mom, and the first thing I said was, “Did you tell [Nurse friend] that my doctor wants me to go to the ER?”

My mom had guilt all over her face! I told her I wasn’t upset, but wanted to know.

She said yes, she had told her. She said our friend said she had never seen me so sick before and something was definitely wrong, and it was time to go to the ER. I told my mom that I was hoping she would tell her, because at that point I couldn’t make decisions and I needed someone I trusted to tell me what I needed to hear.

So we called my husband, and we went to the ER.

Nurse friend, you know who you are. And to this day I am still forever grateful to you.

Also, mom, sorry I put you through so much stress. You are the best!

Part 3 coming next week…

Stay strong and s m i l e

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So we called my husband, and we went to the ER. 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