Next stop.

More tests.

I have been waiting a whole 10 weeks to get to my follow up appointment with the specialist. It was a long wait but I needed to get there as no GP's were taking me seriously, I just kept being told I have IBS and as usual, sent on my way. I knew I didn't have IBS, maybe I do to some extent but not to the extent of my symptoms and, although I have been confirmed to have Gastritis, I knew it was more than that also, you know your own body and you know how your feeling, no one else can truly understand that. So there has to be more, I know there is more and no one except the specialist is going to take me seriously.

I'd done my research and spoke to a few people I connected with on social media who had been experiencing similar symptoms so I had a few ideas in my head of what could be going on, these were; Bile Acid Malabsorption (A condition where your body doesn't absorb bile the way it should), Giardiasis ( A tropical bug) and SIBO (small intestine bacterial overgrowth) . So with all these ideas in my mind I decided the best way to approach this was to write a list, GP's wouldn't listen so this has to be seen by the specialist, when I finally get to see him. I didn't want to tell him how to do his job as he knows more than I do! But I really wanted these options to be considered, just to be sure! So I wrote a list which filled a full A4 sheet of paper that included all my symptoms, what diets I was doing, what medication I had been taking as well as whether it has actual helped or not (no. nothing really helps) and my 3 options for what could possibly be going on.

I woke up on the day feeling extremely negative, I was telling myself I would once again be told it was IBS, I'd walk out that appointment disapointed and no further forward and then I had a think in the bath and decided that I wasn't going to let that happen. I was going to get my point across and be heard!

So I arrived at the appointment and they were running late, I wasn't feeling well and I just wanted to get home to bed but I had to stick it out, I had to be heard and I had to be helped. Half an hour later my name was called and I sat in the consultation room armed with my list. This was just a follow up appointment, he was expecting to discuss the gastritis and how to treat it but I presented him with my list and immediately I saw his face change. He turned to me and said 'You're right, all these symptom's add up to Bile Acid Malabsorption so we need to get a test booked in for that, the good news is, if it is that, it's easily treated" he continued to explain the other possibilities I had listed, what they are, and how they test for them, but we agreed the first thing to do, was to test for malabsorption. This test unfortunately could be a 6-8 week wait and was held at a different hospital, further away in oxford, he told me he would put it down as urgent, and that he doesn't usually do that for these tests but he can see how urgently I need it, so with any luck, it could be sooner. He also told me he wants to take more bloods and samples, he wants to test again for things they previously couldn't find and also wants to check the function of my pancreas, although it is rare and unlikely it is pancreas related he wants to rule absolutely everything out so we can focus on the issue. He went through absolutely everything with me and discussed what we would do next if the malabsorption test comes back negative. Which test we would do next and all the next steps. I shook his hand and went into the nurses office to have my bloods done and then I went on my way and got home to bed.

I left that appointment feeling happier, and positive, I was taken seriously, I wasn't just told I have IBS ( this to me is a diagnoses the give when they don't know whats wrong, just to give you something to stop you from coming back), we have lots to try and to test for and I feel like we will find it in the end. Unfortunately it is once again a lot of waiting, but knowing everything will be tested, that we have a plan and if we can't find one thing, we will test for another makes me feel more settled. Previously i'd be booked in for a test and when the test came back normal, told nothing is wrong and nothing further to be done and I would feel as though I was back at the start, battling with doctors to listen to me but this time is different and I have faith in this doctor.

I am so thankful for our NHS, yes it is slow, they are under a lot of pressure, but thinking about how much all these tests would cost, even just the appointment with the specialist would cost enough, puts it into perspective, we are lucky to have such a system and at a time like this when you really need it, you really appreciate it.

So, to summarise, more tests, more hope, and a stop closer to the end of the road.