I've just had a rather traumatic 6 week admission to hospital that has left me in a pickle!!
I've had crohn's (upper GI) since 2011 and until very recently things had been the best they have ever been - taking 6MP, pantoprazole and having 8 weekly infliximab infusions.
Unfortunately I managed to pick up a viral encephalitis which landed me in ICU for 11 days :-( WHile very unwell they had to stop my crohn's drugs, which is understandable, and switched me over the elemental E028 drinks to try and keep things in check.
Eventually, once neurology, micro and ICU where happy with my progress and my brain was behaving the decided to restart my 6MP...unfortunatley 36 hrs later I developed acute pancreatitis...such a pain..quite literally!
wasn't absorbing anything orally and vomiting loads so ended up with an NJ tube + elemental feed (which was long over due after a period of almost 10 days without nutrition)
and the final nail in the coffin was a mega flare of my crohn's once the pancreatitis was settling down...so more IV steroids.....NJ feeds....more scopes
Now, I've been home for just under 2 weeks now and the issues I need help/advice for are
1. Has anyone ever been able to restart 6MP after it has caused pancreatitis?
2. Are there people out there on infliximab alone?? I'm really scared that one agent might not keep me in remission but I don't know what the other options are.
3. I have the worst insomina in the world at the moment....I know it's probably a combination of 6 weeks in hospital with no sleep wake cycle....added to that high dose steroids and possibly so subtle damage to my brain. Does any one know ANY tips on how to aid sleeping through the night.
4. I seem to have the start of a pressure sore beginning on my sacrum...at the moment it's very red with 2 areas of skin that have broken down (like decapped blisters)...noticed them after a long train journey that was a little uncomfortable! while i was in hospital I had special mattresses and cushions to help prevent them, but no such luck at home. I feel a little embarrased seeing my GP about it but don't want them to get wores. Any tips of dressings?
I've had crohn's (upper GI) since 2011 and until very recently things had been the best they have ever been - taking 6MP, pantoprazole and having 8 weekly infliximab infusions.
Unfortunately I managed to pick up a viral encephalitis which landed me in ICU for 11 days :-( WHile very unwell they had to stop my crohn's drugs, which is understandable, and switched me over the elemental E028 drinks to try and keep things in check.
Eventually, once neurology, micro and ICU where happy with my progress and my brain was behaving the decided to restart my 6MP...unfortunatley 36 hrs later I developed acute pancreatitis...such a pain..quite literally!
wasn't absorbing anything orally and vomiting loads so ended up with an NJ tube + elemental feed (which was long over due after a period of almost 10 days without nutrition)
and the final nail in the coffin was a mega flare of my crohn's once the pancreatitis was settling down...so more IV steroids.....NJ feeds....more scopes
Now, I've been home for just under 2 weeks now and the issues I need help/advice for are
1. Has anyone ever been able to restart 6MP after it has caused pancreatitis?
2. Are there people out there on infliximab alone?? I'm really scared that one agent might not keep me in remission but I don't know what the other options are.
3. I have the worst insomina in the world at the moment....I know it's probably a combination of 6 weeks in hospital with no sleep wake cycle....added to that high dose steroids and possibly so subtle damage to my brain. Does any one know ANY tips on how to aid sleeping through the night.
4. I seem to have the start of a pressure sore beginning on my sacrum...at the moment it's very red with 2 areas of skin that have broken down (like decapped blisters)...noticed them after a long train journey that was a little uncomfortable! while i was in hospital I had special mattresses and cushions to help prevent them, but no such luck at home. I feel a little embarrased seeing my GP about it but don't want them to get wores. Any tips of dressings?
