Unanswered questions

I wrote this a month after coming out of hospital. It explains some of what happened during my time there, and when I first went home.

“On my second day in hospital I was seen by a gastrointestinal specialist, who said he thought it was almost certain I had Ulcerative Colitis or Crohn’s Disease. I was extremely upset. I had read about these illnesses and they sounded horrifying. The specialist said he needed to do an MRI and a colonoscopy to confirm the diagnosis.

I went for the MRI two days later. It showed that my inflammation marker in my intestines was 400 – a normal marker is 5. The specialist also said there was a possibility of “obstructions” causing my ongoing pain. I didn’t know what that meant but it frightened me. I immediately thought he meant tumours, as people in my family have died from bowel cancer.

The specialist said he was putting me on the list for an urgent colonoscopy, and I would have to wait and see until then.

Over the next few days I was in constant pain, stuck in isolation because my C-Diff was contagious, and I was unable to eat any of the hospital food they brought me. I felt useless, scared, exhausted, and alone.

When I came home, those feelings got worse because I live alone, and I was still so ill.

The nurse had instructed me to all my specialist to check in, so I did this a few days later. This is when I found out that when I was discharged from hospital they hadn’t followed any of the instructions my specialist had left in my medical record.

1. They didn’t give me all the drugs listed by my specialist , so I had missed out on taking these drugs for 6 days

2. They didn’t give me my discharge summary for my doctor, which outlined everything that happened to me in hospital and the next steps my doctor needed to take to support me.

3. They didn’t give me me my medical certificate which will allow me to get financial assistance while I can’t work.

4. They didn’t give me a referral to the Brief Intervention Centre, which is a team of counsellors who are trained to help people who have had difficult medical diagnoses.

I was very upset to find all this out. It meant that I had to make another appointment to see my doctor to get these things sorted (which is expensive and tiring for me).

My days started to revolve around my drugs and diet. As I mentioned, you have to be very careful of what you eat when you Ulcerative Colitis or Chrohn’s Disease, or any sort of inflammatory bowel disease (IBD). It’s different for everybody, for some people, some foods will be fine, for others they will cause agony.

My days are incredibly empty for someone who used to work for 10-12 hours. Sometimes I have a visitor which is nice, or my father will take me to the supermarket if I am strong enough that day. Some days, I just sit on the couch, staring into space, unable to find the energy to even read a book. I feel completely useless.

I’d been doing this for three weeks when it started to get really unbearable. It may not sound like a long time but it felt like forever to me. I still didn’t have a confirmed diagnosis. I had done a lot of research on Ulcerative Colitis. It’s a scary disease that often means surgery, can lead to cancer, and reduces your chances of having children.  And of course, because of the vague way my specialist had spoken about tumors and lesions, I worried about cancer.

Then I discovered the next mistake the hospital had made. When I called to find out how much longer it would be until I had my “urgent” colonoscopy – the gastro department told me I wasn’t even on the list.

It turned out that the hospital had lost all my notes from my time as an inpatient, and in those notes was my referral for a colonoscopy. The referral had never made it to the right department.

The hospital said I would now have to see another specialist, as my original one had only been a locum, and had left. The new specialist would re-assess me, and *if* he decided I needed a colonoscopy, I would then go back on the waiting list. This took another three weeks,

Without the colonoscopy, I still don’t know for sure how bad my condition is. I may have a small amount of UC, just in my lower colon. I may have Crohn’s disease throughout my entire intestines. I may have obstructions which are causing painful cramping every time I eat. I may have bleeding lesions. I may need surgery, or different drugs, or to go back into hospital.

I don’t know.”

It’s amazing reading this now, five months later. At that point, I thought three weeks was a long time to be stuck at home! Now I’ve been here almost six months, living this half-life of illness. And I know people to have done it for years. They are so unbelievably strong.

I had the colonoscopy, and the new specialist told me: “It doesn’t look to me like you currently have inflammatory bowel disease. But there is inflammation, and we don’t know why it’s not going away, or when it will. Go home, and rest.”

I was, of course, incredibly relieved not to have IBD. I have since made friends who do, and I understand even more now what a difficult illness it is. But not having a proper diagnosis, or prognosis, is one of the things that has made being ill so hard.

It’s not like a broken leg. It doesn’t show on the outside, it doesn’t have an obvious fix, and I have no idea how much longer I will have to stay at home and “rest.”