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pandarilla

Crohn's disease

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NorthernJambo    1,417

Hopefully you get used to the changes you need to make and are back out the hospital soon enough. (apologies for my ignorance in the subject. Knew a girls with crohns but never really found out the actual day to day impacts)

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pandarilla    1,973

Thanks for the kind words folks.

I've got the semi permanent picc line in now so the two week countdown to leave can officially begin.

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Jamaldo    978

Is the tpn feeding going to be used 100% of the time? So you'll never physically eat anything again?

Apologies if this is a daft question.

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pandarilla    1,973
Is the tpn feeding going to be used 100% of the time? So you'll never physically eat anything again?

 

Apologies if this is a daft question.

 

It's a good question mate. But no, I'll be able to eat.

 

The more I'm able to eat (not so much eat, more successfully digest), the less time on the drip.

 

Hopefully it'll be needed every second day, for 12 hours each time.

 

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ICTChris    5,295

Glad to hear you are feeling better pandarilla.  is it Crohn's disease that Darren Fletcher has or is that something different?  Either way, you can definitely aim for a three year contract with Stoke City.

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pandarilla    1,973
Glad to hear you are feeling better pandarilla.  is it Crohn's disease that Darren Fletcher has or is that something different?  Either way, you can definitely aim for a three year contract with Stoke City.


I'm 36 but I've yet to give up my hopes of a call-up.

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Anyone on here got it? Or close to someone who does?
 
I thought there was a thread already out there, but if there is I couldn't find it.
 
Anyway, I'm just about to start tpn feeding for the first time which is quite a big change in my lifestyle. Basically feeding me nutrition directly into the vein (missing out the problematic digestive system).
 
Anyone got any experience of this? I'm (literally) shiting myself.


I was diagnosed with it in 1988 when I was going on 17 and weight had dropped to less than 7 stone. I had stomach cramps for weeks, getting up during the night with sweats and pain in my guts like you wouldn't believe. Eventually I was puking up no matter what I ate or drank. I was in hospital for a week or two whilst they poked and prodded. I had so many samples of blood taken that my left arm looked like I was a heroin addict. The barium meal was horrible, like drinking Dulux brilliant white emulsion. They said I wasn't drinking it fast enough, not easy when you're feeling shit and have no appetite, so they said they would do it another way. In the end they came with a tube with a curly piece on the end, and proceeded to stick it up my nose and down into my stomach. Absolutely horrific. Felt like I was being choked. Once they eventually got it in they poured the barium in with a funnel.

I thought that was bad enough, but since there were none of the CT/MRI scanners you get now, they wanted to investigate with an endoscope and take a biopsy. I don't use the word lightly but I think the violation was a bit like rape. The reason I say that is that I can relate to some of emotions that rape victims describe. Worse was that they had a group of trainees gathered round to watch whilst I had this done. Can't remember if they were there the first or the second time. Yes, one look into my ring was not enough for them.

Whilst they were conducting all the tests the docs would talk to my folks about what it may be. TB and the big C were both mentioned. A real low point.

Eventually the diagnosis was Crohn's. They put me on Prednisolone (little red steroid pills - they were the strong ones I would have the lower strength white ones later) and Sulphasalazine (big rugby ball shaped yellow pills). I later had Azathioprine it was a steroid magnifier so you could take less steroid to get same effect.

Luckily the treatment worked and within a few years I managed to get off the drugs. I think I was maybe 22ish when I stopped taking the pills, and haven't needed to revert. Not needed to have surgery either.

Don't get me wrong, I've had flare ups and just have to watch what I eat. I find some spicy food is a no no and eggs are particularly bad. I usually know I'm getting a flare up when I get a blinding headache, itchy eyes and rashes. Some days I get up and just feel really lethargic.

I know another sufferer at my work who was diagnosed more recently, he had to try some sort of experimental mouse blood protein IV thing that didn't sound pleasant at all.

Another thing that hit home was when I was getting my endowment mortgage they told me my premiums were higher because as I'd been diagnosed with Crohn's my life expectancy was shorter! I was in the solicitors and can remember my old man had a quip with Blair Morgan about the transfer of Big Duncan Ferguson for £4m, so that'll give you an idea of how long ago that was.

Anyway, good luck with your treatment and if you update the thread with progress I'll be keen to keep an eye on how you are doing.


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John Lambies Doos    1,112

I was diagnosed with it in 1988 when I was going on 17 and weight had dropped to less than 7 stone. I had stomach cramps for weeks, getting up during the night with sweats and pain in my guts like you wouldn't believe. Eventually I was puking up no matter what I ate or drank. I was in hospital for a week or two whilst they poked and prodded. I had so many samples of blood taken that my left arm looked like I was a heroin addict. The barium meal was horrible, like drinking Dulux brilliant white emulsion. They said I wasn't drinking it fast enough, not easy when you're feeling shit and have no appetite, so they said they would do it another way. In the end they came with a tube with a curly piece on the end, and proceeded to stick it up my nose and down into my stomach. Absolutely horrific. Felt like I was being choked. Once they eventually got it in they poured the barium in with a funnel.

I thought that was bad enough, but since there were none of the CT/MRI scanners you get now, they wanted to investigate with an endoscope and take a biopsy. I don't use the word lightly but I think the violation was a bit like rape. The reason I say that is that I can relate to some of emotions that rape victims describe. Worse was that they had a group of trainees gathered round to watch whilst I had this done. Can't remember if they were there the first or the second time. Yes, one look into my ring was not enough for them.

Whilst they were conducting all the tests the docs would talk to my folks about what it may be. TB and the big C were both mentioned. A real low point.

Eventually the diagnosis was Crohn's. They put me on Prednisolone (little red steroid pills - they were the strong ones I would have the lower strength white ones later) and Sulphasalazine (big rugby ball shaped yellow pills). I later had Azathioprine it was a steroid magnifier so you could take less steroid to get same effect.

Luckily the treatment worked and within a few years I managed to get off the drugs. I think I was maybe 22ish when I stopped taking the pills, and haven't needed to revert. Not needed to have surgery either.

Don't get me wrong, I've had flare ups and just have to watch what I eat. I find some spicy food is a no no and eggs are particularly bad. I usually know I'm getting a flare up when I get a blinding headache, itchy eyes and rashes. Some days I get up and just feel really lethargic.

I know another sufferer at my work who was diagnosed more recently, he had to try some sort of experimental mouse blood protein IV thing that didn't sound pleasant at all.

Another thing that hit home was when I was getting my endowment mortgage they told me my premiums were higher because as I'd been diagnosed with Crohn's my life expectancy was shorter! I was in the solicitors and can remember my old man had a quip with Blair Morgan about the transfer of Big Duncan Ferguson for £4m, so that'll give you an idea of how long ago that was.

Anyway, good luck with your treatment and if you update the thread with progress I'll be keen to keep an eye on how you are doing.




That's pretty tough m8. Take care

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You'll have no bother with the line in, probably have more energy for a start. I managed first 2 years of uni in halls & all that entailed without any bother. Didnae stop me eating or bevvying when I felt like either

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The_Kincardine    3,307
15 hours ago, pandarilla said:

Anyone got any experience of this? I'm (literally) shiting myself.

No experience but you're one of the good guys and I have no doubt you'll manage a tricky situation with your usual aplomb.

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Jack Burton    380

Anyone on here got it? Or close to someone who does?
 
I thought there was a thread already out there, but if there is I couldn't find it.
 
Anyway, I'm just about to start tpn feeding for the first time which is quite a big change in my lifestyle. Basically feeding me nutrition directly into the vein (missing out the problematic digestive system).
 
Anyone got any experience of this? I'm (literally) shiting myself.



I've got it unfortunately was diagnosed when I was 15 which was 19 years ago.

I just got off TPN in June after being on it for over two years. My bowel perforated and I was left using a very small amount of my bowel until the rest of it healed.

I found it pretty restricting and was on it 7 nights a week to begin with. Was difficult to try and fit it in alongside work. I could eat what I wanted but could only drink around 1 litre per day. It got easier as I became less reliant on it and I would have been dead without it so very much necessary at the time.

Not sure where you are from but if your consultant is Dr McKee at Glasgow Royal then you are in great hands.

There's a really good Facebook group called TPN UK which I joined which is a great help. Feel free to pm me if you want to talk about it.

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pandarilla    1,973


I've got it unfortunately was diagnosed when I was 15 which was 19 years ago.

I just got off TPN in June after being on it for over two years. My bowel perforated and I was left using a very small amount of my bowel until the rest of it healed.

I found it pretty restricting and was on it 7 nights a week to begin with. Was difficult to try and fit it in alongside work. I could eat what I wanted but could only drink around 1 litre per day. It got easier as I became less reliant on it and I would have been dead without it so very much necessary at the time.

Not sure where you are from but if your consultant is Dr McKee at Glasgow Royal then you are in great hands.

There's a really good Facebook group called TPN UK which I joined which is a great help. Feel free to pm me if you want to talk about it.


Cheers mate! I'll get the missus to join the fb page as I'm not on it.

I'm in Dundee and like you, I'm incredibly fortunate with my consultants (Dr Reynolds leads).

Stay strong mate.

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