Hi folks

Do you remember me? >_>.

It has been a long time. I wish I had some good news to tell you, but the harsh reality is that this past year and a half has been by far and away the worst period of my life. And there is no end in sight, really. The only surprise left is what new ailment I'll get each year: this year, after never having had it before in my life, recurrent cystitis has been the theme. Sounds trivial, but outside of a full-blown obstruction episode it's been the most painful thing I've experienced. Currently on a second course of antibiotics after drinking loads, painkillers, CystoPurin and ignoring it for as long as possible failed to work.

I've also been struggling with recurrent uveitis. I no sooner clear it up than it comes back in either one or both eyes. The uveitis particularly frightens me, because it can cause blindness if not treated. It makes me feel extremely vulnerable, which in turn doesn't do anything for my deteriorating mental health.

It's definitely no exaggeration to say that the extra-intestinal manifestations of Crohn's are worse than the intestinal symptoms these days. The intestinal stuff is deeply boring but also largely predictable and I've developed ways of coping with it. But all the other stuff on top is wearing me down: I'm sick to death of it. I keep on thinking back to my 20s when I barely ever saw a GP and certainly never had a hospital appointment for anything. I wasn't on any medication either. I'm absolutely positive if I had never got Crohn's I still would be pretty physically healthy, like the rest of my family.

Can I mention Brexit and how much that is scaring me too? I'd love to bore you all with a long essay on it, but I'll try to keep it short and bitter. The current government is a loose cannon, so nobody can predict what will happen, other than we won't get a deal before March 29 next year (the Brexit date). That simply will not happen - we can't even agree on the terms of a withdrawal agreement, let alone a deal.

So now the PM is reduced to begging the EU for an extended transition after March 29, but trying to pretend to her own government that she isn't asking for an extended transition. What happens if she isn't granted it and we crash out completely? Well come next March, we'll be in so much trouble, I don't know where to start with outlining how much trouble we'll be in. But medical supplies will definitely be impacted, as will food supplies, plane fights, lorry journeys, and just about everything else which contributes towards a functioning modern society.

But even if our PM succeeds in kicking the can down the road to 2020, it doesn't solve anything after that period. It certainly doesn't solve the long term decline that Brexit will bring. I'll give you an example: the European Medicines Agency. It was based in London, now it's moving to Amsterdam. As part of the EMA and a market of 500 million people, we get new drugs released across the EU simultaneously. Now we'll almost certainly have to wait longer for new drugs to come to the UK - probably years longer. As somebody who is on a fairly new drug already and hoping to move to an even newer one (Stelara), you can imagine how well this sits with me.

More generally, I don't think the NHS will survive both Brexit and the Tories. Actually scrap that. I don't think it will survive Brexit. Not even if Labour get in.

Funnily enough, I do have a way out, but one I probably won't use. My Irish heritage entitles me to Irish citizenship, thus an Irish passport. That would give me the same rights I enjoy currently, e.g. freedom of movement, reciprocal medical care, etc. across all 27 EU countries. If I was younger and physically and mentally healthier I'd jump at this opportunity to make a new life for myself in another European country.

How is everyone anyway? Better than me I hope. Not that that's hard. In fact it's really pathetically, tragically easy right now.

mirowpl... When you talk about how you are wiped most days, have your GI docs been monitoring your vitamin/mineral levels? I have had half of my small intestine removed, so they have to do 3x weekly infusions of 2 litres of potassium chloride, and on the monday one... one of the bags is turned into a "banana bag" of a multivitamin/minerals and magnesium since my levels are all over the place without it. This has helped my energy and focus so much. Sucks that with weekly bloodwork, each infusion is over $1,000, but it has helped me function so much more!

Just thinking about what has helped me in the energy department.

NCOT... so sorry to hear about all these issues you are dealing with in GB. I hate politics because it can mess so much up for people. In the US, there is the going concern about us chronic disease people losing insurance coverage due to the protections being taken away. Thankfully, I am on my wife's health insurance... but if we go back to the previous way at all.. lifetime maximums could come back and that scares me. I had almost $800,000 worth of medical care this past year alone, and would max out one of those $1 or $2 million dollar maximums in a couple years. It is so scary to think that, so I get it. I have started to think in a day at a time type of mindset, because worrying too much will just harm my body more.

Thanks Jakeb. My levels do move around but not to the extent it sounds like yours does. I will double check with gi. I just had annual physical with pcp so awaiting the latest results. Thanks for the suggestion.

Having an Irish passport not only entitles you to live in Ireland but anywhere in the EU. That was one of the reasons why I considered keeping my German citizenship as it would allow me to be a European Union citizen as well. But I gave up my German citizenship because I didn't want to beg the government to let me keep something which is my right by birth. I only have American citizenship now. It can be tough here with the health insurance but thankfully I'm able to work and provide for myself.

Do they need an unexpired passport of your dad or do they need evidence that he's a US citizen? Because an expired US passport is still evidence of being a USC. Have you talked to your dad in renewing it so you can get the Irish passport? Maybe you will be able to convince him to do it for you. He can do it at any embassy if he's not in the US. I would have a heart to heart conversation with him about all this.

How do you like our new forum redesign?

BTW I'm getting my colon removed next month. Wish me luck.

Yes US embassy.

I definitely prefer typing on a keyboard too.

Yes I'm going for the j-pouch. Three step. I'm currently on xeljanz as it was my GIs last attempt to save my colon. But my mind is made up.

Lab - Thanks!

Yeah, not been a good year for me. To put it very very mildly.

Somewhat surprisingly, my dad does appear to be getting his passport renewed. He's got his photos done and is meant to be going to the US embassy next week. I mean, he really should anyway - the Windrush scandal showed that even people who have lived in this country for 50 years and who were originally invited over by the government can still be deported if they don't have a passport. There's no way my dad could manage if he was sent back to the US now. He doesn't know anyone, wouldn't have anywhere to live - it would be a nightmare.

@Andrina - Good luck with the first surgery next week. Hope it goes smoothly for you.

The UK is in an even worse place than the US right now. The levels of corruption that have unfolded over the last two years have been staggering (at least to me - not that many other people seem to care or even know). And if anyone thinks I'm being paranoid about the availability of medicine after Brexit, here's an editorial from The Lancet:

https://pbs.twimg.com/media/dre0uqbxqaazvyn.jpg

I'm sorry about the panic attacks, Lab. It doesn't help you, I know, but I have them all the time. Every time my eye goes red or starts hurting, I worry. Sometimes it spirals into a terror of going blind. I read a statistic recently that uveitis is 250x less common than diabetes type 2 and yet responsible for roughly the same number of cases of vision loss. I mean, hopefully if I keep on top of it with the steroid drops nothing too bad can happen. But I would like to speak to an actual uveitis expert.

I worry about other things too - growing old in the current climate, illness, pain, loneliness, etc.

Sorry, this probably isn't helping... :-/