Only just seen this thread Tony (and now explains the Friday thread picture). Chin up and hope your recuperation goes without a hitch.
Best wishes Tony, just picked up on this thread also. Not so regular a visitor these days!
Here’s to a speedy recovery mate, and second chances!
“Don’t look back, you’re not heading that way.”
I’m sorry it’s taken so long for me to get round to this thread. But thoughts are with you, Tony, and I’m glad you managed to get treatment in time considering how unwell you were. I wish you all the best for a strong recovery from all of this. Take care.
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All the best with your recovery Tony. I too have UC and am on my 3rd 'mab treatment. It's been working well for the last 3 years but inflammation markers look like they are
starting to rise. A mate of mine had his colon removed last year and has a bag fitted. It has totally changed his life for the better. I hope you manage to have the same outcome.
Regards,
maseman
Sorry to hear all this Tony
I hadn't checked in the thread for a while and didn't realise you needed or indeed you'd had surgery. Good to read that you're home and improving
I'm not that far from you. If you need anything, do let me know. Would be good to see you
Just revisiting this forum after many years away, and saw this post.
Although not completely the same, I was diagnosed with Crohn's disease roughly 15 years ago, after a few years of suffering severe stomach cramps. Went through many types of diagnosis and medication before finding something that helps keep flare ups both infrequent and manageable. I'm currently on fortnightly Hymeria self administered injections and it's effectively given me my life back.
If there's anything you need to ask just shout, or if anyone else is going through something similar feel free to PM me.
Very happy for you that your Chrohn’s is under control. Long may it continue.
I've now gone almost three months since surgery, and my weight has increased from 7st7lbs to 9st10lbs, and still increasing steadily. Still got the leg/foot issue but I’m now seeing a physio to treat that. Otherwise, I’m just getting used to managing the stoma with all that entails. It really is a bit of a challenge, but I need to come to terms with it as it’s not going to change.
Good to hear of your weight recovery Tony. Keep on keeping on
Fantastic news mate, can only imagine the joy for you!
Without belittling your gain, I still recall my post depression weight gain with utter joy. Alas I’m now at the not losing end of the scale & need to address that!
Stoma is a hard adjustment, but will become second nature with time from the lady I worked with. I still recall sitting with my wife post op from an abyss in her lower spine, hearing a patient being informed of what had to be done & her bag.
Her sobbing broke my heart, and I will never forget that. You’ve been so strong through all this, you’re going to adapt to the new norm & be loading the miles on the bike (s) through summer, really hoping that for you, Tony.
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Great to see your update, keep being strong mate!
That's great news Tony!
Onwards and upwards my old mate!
Cheers,
Neil.
👍-Bala a bit too far for me at the mo, Currently tied to the shoe box sized bungalow (and the toilet unfortunately) but if you arrive anywhere around Llandudno- Anglesey? There is a very scenic race track on the west coast of Anglesey which your group might want to book…
Some pretty big news today, albeit there is a long path to follow before anything material happens for sufferers.
https://www.bbc.com/news/articles/c1wwdd6v2wjo
Explained in a different way here - https://www.theguardian.com/society/...ogical-pathway
I always thought of the overactive immune system a ‘friendly fire’ attacking the host as collateral damage
A heads up to anyone else suffering from Ulcerative Colitis - but this warning may solely be due to an admin error.
Yesterday I received a letter stating that they will be replacing my Ustekinumab injection produced under the name of Stelara with a cheaper version called Pyzchiva. I read the letter briefly yesterday and thought nothing of it. This morning I read the letter in finer detail and discovered in the final sentence that Pyzchiva is not currently indicated for Ulcerative Colitis, so patients who suffer from it will still continue to receive Stelara.
Next Tuesday I was scheduled to receive a dose of Stelara from Sciensus, so I checked the App - and yep, they've changed the delivery from Stelara to Pyzchiva. I've contacted Sciensus and have put a stop to the delivery. I'd hate to have to dispose of an expensive medicine due to an admin error (I think Stelara is £2k a pop - Pzchiva appears to be about £1K).
I'll update this post when I get an answer one way or another.
Update to the above post
I emailed the IBD team on the 7th, the replied on the 9th that they are looking into it. It is now the 15th and I've had no further response from them.
If you're expecting a Stelara delivery - keep an eye on what they actually intend to deliver to you as I have no idea of how widespread this error is. I believe that after you've accepted a medication it cannot be put back into the health system. This stuff is expensive, so potentially it could cost the NHS a small fortune if the error is widespread.