My story, waiting for a diagnosis.

Last updated: March 2019

It all started 10 weeks ago. It was 4 days before Christmas and I started to suffer with diarrhea. It was very watery diarrhea and I would have this several times a day, although at this point, I didn’t feel particularly unwell so I put it down to something I ate that didn’t agree with me. Also, I wasn’t eating an awful lot of food, but I was busy so didn’t notice.
Christmas Day arrives and I still have the runs so I decide to take an Imodium, as I have to cook Christmas dinner and can’t be running off to the toilet, it had become annoying!
I’ve never really used Imodium before and after a small plate of Christmas dinner, I am so bloated, and slightly disappointed, as I had planned on having a turkey sandwich for supper, some chocolates and all the other types of snacks and treats we all enjoy at Christmas.

That night I could not sleep, the bloating didn’t leave me, it felt like it got worse until the Imodium wore off and I felt so ill I was then convinced I had a stomach bug. On Boxing Day I phoned my boss to explain I would not be in work until after the weekend, I also contacted the doctors as it was almost 7 days that I had been suffering from diarrhea. The doctor requested a stool sample which was tested for infection, nothing showed up.

I started feeling worse..

The following week I had been feeling worse, hardly able to eat or drink, throwing up and spending the majority of my time in bed. I was also unable to sleep due to the constant need to go to the toilet. That was a second week off work and after speaking with the doctors again, they took a blood sample to check for some other infections. These blood tests also came back clear.

At the start of week three I had an appointment with my doctor. She looked me over and we discussed the idea that I likely did have an infection or virus but my body had cleared it up before the tests were taken. We agreed that if I was feeling better by the end of the week, that another set of blood tests and stool samples would be taken.

At the end of the week I went along for the blood test and provided the stool sample as requested.
I was still having diarrhea but I was able to get dressed during the day and make it as far as the supermarket. Although, I had very little energy, was unable to eat much at all and needed to be close to a toilet at all times.

That weekend I went to a function, I didn’t drink and I wore so much makeup to try and put some color and life into my face.
I’d also lost a stone in weight, so the compliments were rolling in and although I still felt very tired and run down, I started to feel like I would be returning to work at some point in the following week.

The following day I felt very tired, I counted 20 toilet trips and every single one was the awful watery diarrhea. I managed to get some sleep and hoped that I was on the road to recovery. I just wanted to get back to work and back to normality.

Unfortunately, that wasn't the case.

Sadly I woke up the next day feeling so ill. The diarrhea was awful and I was vomiting (on an empty stomach too!) this really was unpleasant. My husband drove me to the doctors, in fact this was the first time I didn’t drive myself there. I saw a different doctor who gave me some antibiotics. I felt that these were more of a reassurance thing as they had never found any infection. Either way I started to feel better again that week. I still had diarrhea (although this was mainly in the morning, so much more manageable), was unable to eat properly, I was eating small amounts of plain food.

I decided to return to work, and I’d say at this point, I was just coping with getting to work, being at work and doing my job to a basic standard. I actually felt quite upset because I wasn’t working effectively, I know my colleagues had to help me a lot. I was feeling quite forgetful and not very focused. The doctors had referred me to the gastrointestinal consultant at the hospital. I also provided another stool and blood sample. Which again came back “clear”

It was only after this third round of tests that the doctor explained to me that they had also tested the stool sample for fecal calprotectin, to detect inflammation in the bowel and that all of my tests showed high levels of this.

The gastrointestinal department contacted me and booked me in for a colonoscopy, it was a very quick turn around from referral to appointment as I was able to take a cancellation.

I had the colonoscopy and although there wasn’t much to be seen, they took 16 biopsies. Told me they would write to me in 6 weeks with the results as they were going to test for Crohn's. I don’t know if they test it for anything else. I will have to ask my doctor.

So it’s 10 weeks on from the first day of feeling ill. I still have diarrhea 95% of the time, but I’m eating as normal now. My doctor has told me not to cut anything out of my diet just yet, although strangers who know I’ve been ill seem to think it’s a good idea. I’ve started to ask them how many years they went to medical school for. That was an eye opener for me, the ignorance of people.

One particular weekend I was at an event, there were lots of people I knew there and people who know me although I don’t really know who they are. I’d woken up that morning after not having much sleep, I was visiting the toilet frequently, my stomach was in pain and as soon as I’d eaten breakfast, I threw it up. I’ll add that vomiting during this had been so very painful. I’d never had that before when being sick. After I was sick I sat on my bed and cried. Of course, this had all affected my mental health and I was just feeling so so fed up, I was considering not attending the event, just staying in bed by myself. But after a few minutes of feeling sorry for myself, I decided I would take some time, get a shower, use make up as my therapy and make myself look good on the outside.
I attended the event, had a good catch up with lots of people I hadn’t seen for a while. I answered some strange questions from people I barely knew. That really started to wear me down over the (long) day.
“Have you tried giving up bread?”
“You were sick? Maybe you’re pregnant”
I love this one and I have to remind myself it’s coming from a positive way of thinking but it gets annoying
“You’re looking really good, you must be better now”

I promised myself that evening that I would never ever make assumptions about a persons health, mental or physical. I’ve had these symptoms for 10 weeks, or 70 days and I am already done with other people’s opinions. I almost wish no one knew I was ill. But of course, you cannot live like that.

So I’m waiting to find out if I have Crohn's, and I will be completely honest. I hope I don’t.

But if I do, I have seen that there is a lot of support between people living with IBD and I think I will need it.

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