"I simply feel I've been let down big time"

I was diagnosed with having a disease called Ulcerative Colitis which comes under the umbrella term Irritable Bowel Disease (IBD).

I had suffered in silence, scared to find out what this thing was, for probably a couple of years whilst working through it before deciding to take myself to the GP. 

After being referred to the IBD team I underwent a Colonoscopy, was told I had UC and sent on my merry way with a cup of tea and a biscuit and absolutely no real idea what I was facing. 

In the, let's call it 5 years since I was diagnosed, I have been on the same medication with no further check ups or aftercare. 

Fair enough, they are very busy, I'm incredibly thankful they put a name to this illness for me, yet here I am all these years later and I am no further forward. In fact things have slowly degraded until as I type I am medically underweight, have almost a skeletal frame, suffer from constant debilitating fatigue which can be a symptom of this disease as I found out through the NHS website. 

Despite me almost pleading to be put on the list for another colonoscopy, as at the moment my stomach seems to react poorly to any kind of food, I've feel absolutely stonewalled and to be honest it's been a crushing blow for me as I've since developed nerve damage in a couple of places which the physios state is down to lack of padding and I'm currently on a several year waiting list for that. 

All in all, they do great work, it's a disease which not many people are aware of and so I was really glad to have them there. If only I'd known then how much it would affect absolutely everything in my life, maybe it's me that should have done more research, who knows? 

So to sum up really, excellent and quick work to diagnose me. However, once the disease has taken a real toll on your physical and also mental health, I've found them to be absolutely useless. I don't even mean to be disrespectful as I admire doctors, nurses, support staff and the NHS as a whole. 

I simply feel I've been let down big time.