Hi there, I'm reaching out for some support to help me support someone else.
My best friend is 42 and started suffering only 3 years ago. He was diagnosed quickly with 'suspected' Crohn's. Back then, steroids didn't help him but a course of antibiotics very quickly seemed to sort him out and he stayed well for a couple of years.
Just before Christmas, he developed a fistula and with head in sand, ignored it having no idea that it could be related to Crohn's. He had surgery aprox June of this year to resolve this and is currently waiting for his seton stitch to be removed.
A week or so after his surgery, he developed an awful Crohn's flare up resulting in a CRP level of over 270. After much persuasion, he was in hospital for a week & a half on a cocktail of 3 antibiotics fed by drip. They did little to lower his inflammation so he started Remsima and 2 days later was allowed home with a CRP level of 120.
It looked like he would progress initially, but this quickly stopped. He had his next dose 2 weeks after leaving hospital and the following day, felt an improvement which again declined quickly. After a further 4 or 6 weeks he had the next dose (just this week) and is feeling as bad as ever. Just prior to his last infusion, his CRP level had raised to 150.
The original plan was for him to go onto 6 weekly maintenance doses next but I presume he's not in a position for that now. I say presume, because we're so in the dark about everything. Nobody has spoken to us about what his diagnosis means, what his future looks like, what the illness is about, what his options are - what we are learning comes from the internet, such as the fistula association.
He's barely eating and has dramatically lost weight. I'm deeply concerned that his body is going to fail as a result of that too.
We asked his specialist for a referral to a dietician in the beginning but this was dismissed as if it wouldn't help. Is that true?
A sympathetic GP referred him to one recently and she was horrified that he'd not seen her before. She provided him with a very bland diet plan that she said would leave nothing undigested but he's too ill to eat any of it. He has some Ensure Plus drinks but struggles to manage those too.
He has a gastro specialist appointment this week and I really want to understand what questions I should be asking. This is the first I'll be attending - I've insisted on going because he's so unwell, he hasn't got the fight to challenge (where appropriate) or ask questions. He's happy for me to go in with him.
I'm so afraid. I can't believe how unkind this illness is and how strong you all must be to cope. If you have any tips - for him as a sufferer or me as someone who is literally his only support person (his choice) - I'd be so grateful.
Best wishes to everyone.
My best friend is 42 and started suffering only 3 years ago. He was diagnosed quickly with 'suspected' Crohn's. Back then, steroids didn't help him but a course of antibiotics very quickly seemed to sort him out and he stayed well for a couple of years.
Just before Christmas, he developed a fistula and with head in sand, ignored it having no idea that it could be related to Crohn's. He had surgery aprox June of this year to resolve this and is currently waiting for his seton stitch to be removed.
A week or so after his surgery, he developed an awful Crohn's flare up resulting in a CRP level of over 270. After much persuasion, he was in hospital for a week & a half on a cocktail of 3 antibiotics fed by drip. They did little to lower his inflammation so he started Remsima and 2 days later was allowed home with a CRP level of 120.
It looked like he would progress initially, but this quickly stopped. He had his next dose 2 weeks after leaving hospital and the following day, felt an improvement which again declined quickly. After a further 4 or 6 weeks he had the next dose (just this week) and is feeling as bad as ever. Just prior to his last infusion, his CRP level had raised to 150.
The original plan was for him to go onto 6 weekly maintenance doses next but I presume he's not in a position for that now. I say presume, because we're so in the dark about everything. Nobody has spoken to us about what his diagnosis means, what his future looks like, what the illness is about, what his options are - what we are learning comes from the internet, such as the fistula association.
He's barely eating and has dramatically lost weight. I'm deeply concerned that his body is going to fail as a result of that too.
We asked his specialist for a referral to a dietician in the beginning but this was dismissed as if it wouldn't help. Is that true?
A sympathetic GP referred him to one recently and she was horrified that he'd not seen her before. She provided him with a very bland diet plan that she said would leave nothing undigested but he's too ill to eat any of it. He has some Ensure Plus drinks but struggles to manage those too.
He has a gastro specialist appointment this week and I really want to understand what questions I should be asking. This is the first I'll be attending - I've insisted on going because he's so unwell, he hasn't got the fight to challenge (where appropriate) or ask questions. He's happy for me to go in with him.
I'm so afraid. I can't believe how unkind this illness is and how strong you all must be to cope. If you have any tips - for him as a sufferer or me as someone who is literally his only support person (his choice) - I'd be so grateful.
Best wishes to everyone.
