The Frustrations of Searching for a Diagnosis

I’ve previously discussed how my bowel condition has caused untold grief, taking twenty years for me to get a GP to listen to me and refer me to a Gastro specialist and that since being under the consultant things haven’t gone smoothly.

The tests I have had have now gone into double figures, and I have only seen my consultant once, last November! All other contact has been via her secretary over the phone and by mail.

A few months ago I received a letter to say that despite a few of my recent tests for Small Bowel Bacterial Overgrowth (SBBO) being negative, my reactions to the tests indicated otherwise. This was because with each of these tests I had been extremely ill and had reactions which had indicated there should be a positive result.

She had decided that I should receive a course of antibiotics used to treat SBBO to see how my condition fared. As I was in the middle of moving and having something of a breakdown at the time, I waited until I was settled in my new home and registered with my new GP before getting this started.

I took the letter with me to the GP, and got met with a blank reaction. Great start!
It was clear the GP didn’t have a clue, she looked up the standard course of treatment for testing SBBO and wrote me a prescription.

I had been given a ten-day course of Ciprofloxacin, it’s a pretty epic antibiotic and I wasn’t holding out much hope. Nothing I’ve ever taken in the past has helped and all my tests over the past year have led to dead ends.

Within three days of starting the course I felt good. Now, only someone who has been in consistent pain, every single day for over twenty years can understand what it was like to wake up pain-free. This wasn’t like when I take painkillers and replace the throbbing for a fuzzy brain. This was completely clear-headed, pain free bliss.

I tested the water by eating some fruit, something I’ve been unable to eat for a few years as my condition has got progressively worse and had no side effects. Through the next few days I added other foods to my diet which over the years I’ve had to eliminate due to the negative reactions my bowel has increasingly had. I also had no allergic reactions which I used to.

I also had an untold amount of energy, I felt like I was a teenager again, so full of life and able to do anything I wanted. For a whole week I had a vacation from my own illness…it was pure bliss.

Then the Ciprofloxacin ran out and just as quickly as they started working, not being on the tablets anymore caused all my symptoms to return. The pain returned, the bowel side effects came back, no more lovely foods…no more energy.

I returned to the GP a few weeks later with a diary to show the difference this had made to my life. I still hadn’t (haven’t) received an appointment to see my consultant so the GP had to be my go to. I begged for more, told them how much they changed my life and was shut down, told they wouldn’t give me more unless the consultant requested it. That as GP’s they know nothing about SBBO and don’t make decisions about its treatment.

The worst part was she told me I had to be the one to chase my consultant. GP’s know that consultant’s don’t get back to patients. My last GP used to do things like this themselves. If they needed the consultants advice they would get it, not go through me.

The GP also upset me more than I can describe regarding my depression, and between the two issues left me feeling they cannot be trusted and have no empathy for patients.

This was three weeks ago, I haven’t been back to my GP, afraid of what they will do or say next. I can’t reach my consultant and have left a few messages but as I suspected my pleas are falling on deaf ears.

In the mean time I am back to doing the best I can with painkillers and a lacklustre diet.

All I hear from people is how wonderful the health service is in the UK, how lucky we are to have a free health service, but it’s not free, we pay for it out of our wages. And it fails me at every turn, and has done my entire life. I honestly think we would be better off without it, I would rather be paying for a first class service than this mediocre pitiful excuse for a service.

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