Why can nobody find a cure for horrific IBS and pain? And the agony of trying to put on weight

Anorexia is not just a case of wanting to lose weight - it's also a social curse.


I only discovered recently that the illness makes you retreat into a bubble and drives you to isolate yourself from the rest of the world. 

That - and my awful IBS - have led to me becoming increasingly lonely. I can barely leave the house other than to go for a walk, and I hardly talk to anyone. Life is passing me by and I feel like there's no end in sight for this misery.

I made a concerted effort to try and put on weight at the end of last year having seen how hard my family have tried to keep me alive. Adding in the extra calories made my stomach pain worse but I have kept going and am now above 7 stone. Even saying that feels scary as the slightest weight gain triggers huge anxiety.

Despite this, I was forced into hospital the week before Christmas. The message was blunt: you're being admitted in two days or you're being sectioned. 

Scared out of my mind, I got there and was told I could leave at any time which felt bizarre. After a night of excruciating pain and with no offer of treatment, I left and was thankfully home in time for Christmas, albeit the experience left me in despair and feeling no closer to a solution to my ill health.

I'm now at the point where I've pretty much stopped functioning as a human. But what drives me insane is believing that getting my IBS and chronic pain under control are possible.

I was feeling a lot better six months ago, but after trying experimental treatment to improve my gut bacteria (through a faecal microbiota transplantation), my IBS has hit me again with a vengeance. It's possible that bacteria has gone into my small intestine, causing extreme reactions to anything which goes into my gut.

Now, pretty much all foods leave me in so much pain that I've cut out almost everything from my diet just to allow me to get through the day. I've gone from having almost no wind to now having constant (and very smelly) gas, not to mention regular cramping and bouts of constipation and diarrhoea.

It feels like my body is under constant attack and, as a result, I'm in a constant state of anxiety and panic. It's only in the rare moments that my stomach settles that I feel any sense of relaxation, but these do not last long.

So many things are happening to me which I can't explain, so I'm putting these out there in the vague hope that someone reading this may have some clue, or can put me in touch with someone who may do:

  • Why are the nerves in my body throbbing so much and why do they only settle down when I apply pressure on them?
  • Why have I gone from being able to eat a fairly balanced diet to now barely being able to eat at all?
  • Why does it hurt when I look in certain positions? Why can I think clearly when standing in one spot, but when I shift an inch the other way I have this horrible brain fog?
  • Why can I go from shivering cold one minute to sweating the next?
  • Why did I see my IBS so much in hospital last May, despite not receiving any treatment for it, only for it to regress so much now?
  • My stomach pain is mainly on my left side and began shortly before my chronic pain developed, also on my left side. Are the two linked?
  • Why do I get so much stomach pain when I have sugars, and why do I feel sick (and get diarrhoea) from eating foods with even a small amount of fat?
I've seen specialists on the NHS and privately, but nobody has any answers for why my body is behaving the way it is. I'm convinced there is a cure, that something is going on in my gut that is causing my nervous system to malfunction.

Every so often I have a day where I feel better, where I feel energetic, calm and able to function properly. But those times are so rare and don't last long. Meanwhile, I face a daily battle with my weight, I'm missing out on my daughter growing up, I'm becoming more isolated and lonely, my overdraft increases as Universal Credit fails to match my loss of income as I can no longer work and I question why I want to live any more.

My next IBS appointment is not until June, and even that is just a consultation. I would give anything for someone to say why my body is so out of control, just to let me live some sort of life again. I really can't take much more of this, and I worry every day that at some point I'll be sectioned - a thought too grim to contemplate.

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