The Wednesday Wellness threads are meant to encourage users to ask for and provide advice and motivation to improve their lives. It isn't intended as a 'containment thread' and any content which could go here could instead be posted in its own thread. You could post:
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Requests for advice and / or encouragement. On basically any topic and for any scale of problem.
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Updates to let us know how you are doing. This provides valuable feedback on past advice / encouragement and will hopefully make people feel a little more motivated to follow through. If you want to be reminded to post your update, see the post titled 'update reminders', below.
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Advice. This can be in response to a request for advice or just something that you think could be generally useful for many people here.
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Encouragement. Probably best directed at specific users, but if you feel like just encouraging people in general I don't think anyone is going to object. I don't think I really need to say this, but just to be clear; encouragement should have a generally positive tone and not shame people (if people feel that shame might be an effective tool for motivating people, please discuss this so we can form a group consensus on how to use it rather than just trying it).
Jump in the discussion.
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Firstly, my condolences, UC is a shitty disease (the pun is not entirely intended).
If you expect actual advice, my ability to help is rather limited. Maybe a year or so back, when this was a topic I'd been branding into my brain, I could have told you something useful. As it is, some of the drugs you've mentioned are brand new, and unheard of in UK practice. I have very little reason to look at biologics, and trust me, the names are just as abstruse to me as they are to you.
Given what you've told me, it seems your doctor thinks the cheap/easy options like aminosalicylates or corticosteroids are no longer effective. I don't know how much of the impetus behind the additional colonoscopy's was to stage the disease and how much was to screen for or exclude colon cancer.
The NHS probably would have been simpler and easier. If I'm being thankful for the few benefits the system has, wrangling insurance is something I'm mercifully reprieved from worrying about. You would have had a harder time getting the specific biologic you're on, but I'm not sure how significant the differences are between them. We're not so backward that you wouldn't have had an equivalent at hand.
Have you considered the feasibility of going to Mexico for treatment? I'm talking out of my ass here, and I can't imagine it would be easy to go there on a regular basis. It may or may not be cheaper.
Oh not so much advice, just tagging you in on a kind of NHS related post. Colonoscopy is both as you said to stage the disease and because she worried about colon cancer, as UC increases the risk and I'm in my 50's and a meat eater.
Luckily while I am partially retired, I am reasonably well off so a few thousand dollars will not break my bank. Mainly I just dislike how up in the air everything is, as to what something will cost at least ballpark.
I'd say some of the burden the NHS takes off patients compared to the US it puts onto medical staff. And my brethren in Scotland are not exactly renowned for their physical or mental health so I am sure you have your hands full as it is.
Neither patients nor I have to worry about insurance, so that's a relief!
The NHS is well past its prime. I would say it's undergoing a slow-motion collapse. If you show up to the ER with a condition that is liable to kill you in a few minutes or hours, you'll probably be seen to very quickly. Everything else takes its sweet time. Something like a routine colonoscopy might take months to get an appointment for. The wait lists are just too long.
I'm not at an age where I have to worry about significant medical expenses, but later down the line, one must confront the choice between cheap/quick/quality. The NHS errs on the side of the former.
It does. Which is why in the US I had like 5 people call me (pharmacist, nurse, Drug company rep, pharmacy tech, doctors office) before my infusion, all that cost disease money over here is at least employing people!
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