Yeah, they need to do something. They can’t just leave you like that.
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@Taw my mother said that and I didn’t believe her but found out she was on the money/bang on.
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I had very bad constipation when I crashed. Laxatives helped a lot. I managed to get things going again with macrogol sachets, high dose (like 4-5 a day for several days).
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Another crevice appeared overnight. 5th 1 in a week.
On a slight positive which may be very premature the extreme pain has dropped slightly since starting the jak inhibitor only yesterday. Benefits aren’t normally experienced until the 2 week mark but some of us are extremely sensitive given the gene overexpression. It can also help with gastro issues such as leaky gut ibs which can only be a good thing. I’ll keep you posted.
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Praying for you brother, you’ve been through hell and back with this condition. I hope this medication helps you
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Suffered an explosion last night everything in the pfs armoury hit me. I’m going to perservere with olumiant for a couple of weeks because I have no choice I broke omad yesterday in light of the abatement in pain and tried to enjoy a hearty meal for 1nce. Let’s hope it was that rather than being dragged back into the depths because of yet another extreme reaction. The only thing that is safe seems to be H20 and air.
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Well the Dr still refuses to send me for a scan or ultrasound to see what is causing the blockage A& E would bounce me back to the GP. so I’ve scheduled in an irrigation privately which comes with risks given my overall weakened state. However It will simply clear me out but not identify or resolve the underlying problem. I think the 3 mil further loss of volume from my face in 3 months (greqter jaw recession) and the absolute disintegration of my remaining muscles, loss of weight are signs of a total system shut down. My heart has been racing in bed and I have pains in what feels like the heart muscle itself ‘not anxiety’ I really think that my life will be over soon. Its not an emotional bleet like what happens when new traumatised members are struggling with the onslaught of the drop in neurosteroids this is the reality of the last few months. I booked a holiday with my wife and son upon returning from SA for obvious reasons At the time it seemed a probable but now feels like a terrible idea it’s in 12 days time. I don’t want to admit full defeat yet. The jak inhibitor may also be a problem as I’m encountering extremely dry hands and all the hallmarks of a 5ari but I have no choice but to continue because the pain and ensuing disability from widespread cortisol inflammation which is unabated. Like Mark I will try to pull a story together for awareness. I’ve instructed my sister to make a donation from the proceeds of my estate. I did what I could to help to support others and to raise awareness as long as I could. Just getting it out there incase my life is snuffed out in the coming days/weeks. This is not a suicide note, I’m not strong enough for that.
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" I did what I could to help to support others and to raise awareness as long as I could. Just getting it out there incase my life is snuffed out in the coming days/weeks"
Dear Ryan,
once it will become one of the biggest scandals in history of medicine that these horrible post drug syndromes had been tolerated for profit about 25 years and more.
Hope your story shall help to open up the eyes of the public community that people get lobotomized and castrated in so called democratic states so proud of the human rights.
Even killed by this drugs by committing suicide or after decades of suffering
In our case the human rights have been prostituted for profit of the evil. Called Merck. They developed the genetical defect of poor hermaphrodites to a perverted medicine prescribed by an perverted profit and not patient security driven evil system.
Your life our lives have been destroyed for this perversion of pharmaceutical companies.
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Makes you wonder what future historians will think of our plights. There will be no forgetting about us because the internet creates a permanent record. Maybe it will be taught about in schools in the distant future.
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Dear Lazarus,
My heart bleeds when I read this. You’ve been there for me, and everyone else here, to the best of your ability. Even in spite of your own immeasurable suffering, you endured for us. I’d hate to ask you to endure a bit longer, because I understand. Sometimes the suffering is too much.
But with the new research coming up, raised awareness and new medical revolutions like CRISPR that are basically around the corner, there’s a tiny silver lining around that gigantic supercell that completely pours over your and our lives at this moment.
Even though I don’t know you, you are one of the strongest human beings I have encountered. I hope, sincerely, that you can experience some relief in the short term as to improve your outlook.
I will light a candle for you.
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@LazarusRy
Your strength in the face of what’s happening to you, is beyond admirable.
I can only pray that, like the Lazarus in the Bible, a miracle is in your near future. Stay strong as long as you can, Jim
Edit to add: This forum needs a “sad face emoji” beside the heart. God knows it would get plenty of use!
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Yeah something to connote empathy. At least it’s a heart and not a thumbs up.
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@LazarusRy I just want to echo the others’ statements and say that you’ve been one of the most positive members of the community despite your tremendous suffering. You’re one of the bravest people I’ve ever seen and are the true embodiment of a hero. I totally understand how you feel right now but I do believe there could be hope for us as @Crembo pointed out.
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I want to add to what others have said here @LazarusRy. We haven’t spoken but I have read a lot of the forum and you are always such a supportive, kind voice to others despite the hell which you endure so courageously each day.
I really do believe there is hope for us in the not too distant future. As you wrote recently elsewhere on the forum:
I send you strength to try and carry on and keep you in my thoughts. As @Toughluck24 says, you’re a true hero.
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Dear Ryan,
after your dramatic post two days ago, I think we are all concerned about your current condition.
Hope you feel a little bit better with your actual problems and you have arranged support and the things done that have to be done.
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5:47 PM here Middle European Time. You have been seen 46 min ago. So everything is going on. Still on board today.
That’s fine!
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GP was talking about admitting me to hospital this morning then when I spoke to him later he decided that more enemas were appropriate and
told me to go to A and E over the weekend if things haven’t improved. It looks like colonic irrigation on Monday is my best bet. The Gastro referral came back stating SIBO seems to be the flavour of the day and said it was very unlikely to have it despite having every symptom ffs.
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