"Lack of aftercare"

Five years ago I had a partial gastrectomy. Since the operation I have never felt well. I'm usually at some level of aneamia, lost over 100lbs, and suffer from various other health issues. Recently I realised I've probably been malnourished since the operation. There are issues with my kidneys now, almost constant infection for a year, as they are having to absorb everything my body would normally absorb. Malabsorption issues are very common post gastrectomy. Most distressingly, I found out there has never been a plan in place to monitor these common issues.  

I've paid to see consultants privately, I've begged for help. I've lost the last 5 years of my life and I've lost everything that I had in my life. I spend most of my life house bound or bed ridden, stuck inside four walls. I've tried to tell anyone who'd listen how badly the issues post gastrectomy have affected me. Forget quality of life, I don't have a life. 

I explained to several doctors that after getting iron or blood I only feel a little better but not well. I explained that I know I can't be, but I always feel anemic. I found out a few months ago that my Vit D level had dropped to almost zero and had been very low for years. Turns out Vit D deficiency presents very similar to iron deficient aneamia. I explained further that I feel I might be malnourished, especially after losing over 100lbs. I have other symptoms of  malnutrition. Besides the huge weight loss I suffer with extreme fatigue, I'm physically much weaker, I've lost a lot of hair, my brain seems to go in slow motion, I find it difficult to think, my teeth are becoming loose and my bones seem weaker. I have strange symptoms too, like blisters all over my body (like chicken pox) and ulcers in my mouth and down my throat. I had teeth knocked during an OGD over a year ago. I can't have the work done that's needed to repair them as my mouth is full of blisters and ulcers. Instead of things getting better, they're getting worse. 

For five years I've watched life pass me by, unable to take part. At the moment I'm aneamic and getting worse by the day. I have a friend coming to visit me from overseas. It seems I'm going to miss out on this too as I'm already house bound and will soon be bed ridden. I have an appointment for an iron infusion at the Medical Day Case Unit at The Ulster Hospital. They've been very kind and have tried their best to help and have given me an appointment a little sooner than the original one. Unfortunately, it's still too late for my friend's visit. 

My health post gastrectomy isn't strange or unique. It is completely normal and often referred to as Post Gastrectomy Syndrome, yet no one I speak to seems to understand that. I should not be without a plan or without monitoring. I should not have to beg for help. The last time the consultants office contacted me, I begged them to ask my GP to check my bloods. I was told emphatically that I wasn't aneamic and there was no need for blood tests, yet just days later I ended up in A&E with some of the lowest levels I've ever had. 

I honestly don't know how much longer I can continue to fight for help. It's been a long five years.  Should I just accept that this is my life now? Sleeping 20 hours a day. Going nowhere. Doing nothing. Seeing no one. Missing out on simple things like family meals, and walking the dog. Falling deeper and deeper into depression. Yet, I could be quite well with just a couple of injections and an iron infusion once in a while?