Too much too soon

[Red Rabbit]

Hello to all

I am new to this forum and so please go easy on me!
I was formally diagnosed with Crohns in 2013 after a major operation to remove some small bowel. It took a very very long process before doctors did anything to help. It took a visit to A & E with an abscess caused by a ruptured bowel before any real acknowledgement that my 15 years of suffering was not my imagination.

After recovering from my op in mid July 2013, I was very positive about getting on with life. My doctors said they would start medication asap to help keep me in remission. 10 months later, I started medication. However in hindsight I realise that things had already began to deteriorate at that time.

In Jan 2015 I was having serious problems and was in and out of hospital thru to May. In that time I had lost over 30kg in weight, could not eat and was exceedingly weak. It was in July 2015 that I had another op to remove a large amount of small bowel. I was in hospital for over four months and had a stoma. This has now been reversed and my life is near normal again.

I feel absolutely lost about the last year or so. I do not know how I managed to get through it. There were moments that I had hit the lowest point of rock bottom. The only reason I went through hell and crawled from this pit was the unbearable thought of leaving my wife behind.

I am starting to realise that I haven't dealt with the grief of last year at all. I did what I had to do to survive. I don't think I could ever go through that again. I don't dwell on it at all but I feel the impact. This whole thing has floored me. It scared me and that is unusual.

I am terrified that it might come back again in the near future. The onset of symptoms is gradual and so I find it hard to justify concerns to my consultant or gp. To diagnose a flare can take 6 months or so by the time tests and cameras are organised and by that time the disease would had progressed rapidly. Also the criteria for access to biologic drugs mean that by the time diagnosis is confirmed and funding is approved, the disease has progressed beyond the point at which biologics can be a benefit.

This makes NHS treatment of this illness nonsensical and I fear that I am doomed to mercy of this Crohns.

I really don't know what to do and where to start. I would be grateful for any advice.

 

[Cat-a-Tonic]

Hi, welcome to the forum. You've definitely been through a lot! And you've touched on what many of us experience - that the mental aspects of this illness are sometimes worse than the physical. The fear that a flare-up could come on at any time, having to constantly be diligent about things like diet and meds and stress levels, just the mental toll that it takes on us - it's huge. And most doctors don't focus on that aspect at all, they only deal with healing the physical side of things. You said you haven't really addressed it yet yourself. The forum is a great place to start! We've all been through similar things so feel free to vent to us anytime. We are a support forum first and foremost, so please know that we are here for you and we understand.

I'm not quite sure how the NHS works, but I'm wondering if there are local support groups or a therapist that you could also talk to for some in-person support? It sounds like you really do need as much support as possible right now. You mentioned your wife, is she supportive as well? How has she been holding up throughout everything you've been through?

I hope you don't feel like you are doomed. It is a terrible illness, to be sure, but they are always working on better treatments and there may even be a cure well within our lifetimes. Don't give up hope! Even with the treatments that are currently available, remission is possible and a fairly normal life can be led, I promise (full disclosure, I am currently flaring myself but I've spent a few years in remission and I've been able to work, exercise, eat, travel, and just generally enjoy life - currently fighting to get back into remission and I'm sure I can do it). Keep fighting, and make sure to do it for your own sake as well as your wife's. Hopefully some UK members can pop in here and give you more specific advice about the NHS. Good luck and welcome!

 

[ronroush7]

Welcome. You will find lots of support here. Feel free to come here anytime.

 

[Red Rabbit]

Thank you for your kind words and welcome. Cat-a-tonic, the feeling of doom is purely due to the catch 22 situation with access to treatment. It was only after a visit to accident and emergency with an abscess that could have ruptured at any point, that the doctors started to listen. I'm very lucky that my body contained the rupture and that I went to hospital when I did because it was a life threatening situation.
I had seen consultants and doctors months beforehand and they did very little. In fact one consultant blatantly said that they will wait until things are serious as they should be able to deal will anything that could happen.
I also ended up and accident and emergency on another occasion with serious septicaemia and they actually put me into resus in case I had cardiac arrest and were preparing to operate if I got any worse. Again this was after months of seeing doctors.

Even after my first op, it took 9 months to start me on Azathioprine. Shortly afterwards I started having flares then progressed into a full bowel obstruction and a second op. By the time they agreed to use Humira it was far far too late. The surgeon said that she had seen nothing like the mess my bowel was in and that she doesn't know how I had managed for so long.
After everything I spoke to the GI consultant. They agreed that by the time that they reach the criteria to start Biologics for severe Crohns it's too late. So this prevents me getting the treatment that I need. I cannot go private because it costs tens of thousands of pounds and no private medical insurance will touch me of course. So I am doomed to not get the next level of treatment that I need.

 

[ronroush7]

Thank you for your kind words and welcome. Cat-a-tonic, the feeling of doom is purely due to the catch 22 situation with access to treatment. It was only after a visit to accident and emergency with an abscess that could have ruptured at any point, that the doctors started to listen. I'm very lucky that my body contained the rupture and that I went to hospital when I did because it was a life threatening situation.
I had seen consultants and doctors months beforehand and they did very little. In fact one consultant blatantly said that they will wait until things are serious as they should be able to deal will anything that could happen.
I also ended up and accident and emergency on another occasion with serious septicaemia and they actually put me into resus in case I had cardiac arrest and were preparing to operate if I got any worse. Again this was after months of seeing doctors.

Even after my first op, it took 9 months to start me on Azathioprine. Shortly afterwards I started having flares then progressed into a full bowel obstruction and a second op. By the time they agreed to use Humira it was far far too late. The surgeon said that she had seen nothing like the mess my bowel was in and that she doesn't know how I had managed for so long.
After everything I spoke to the GI consultant. They agreed that by the time that they reach the criteria to start Biologics for severe Crohns it's too late. So this prevents me getting the treatment that I need. I cannot go private because it costs tens of thousands of pounds and no private medical insurance will touch me of course. So I am doomed to not get the next level of treatment that I need.

I am so sorry. I hope the best for you.