My Experience with Crohn's

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Ataraxia
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/13/2009 8:12 AM (GMT -7)   
I'm sorry, Andy, but I've had to edit your post because it contravenes the forum rules:

4. No advertising or links to advertising or "Spam" is permited (including signatures).
Advertising or Spam is defined as posting a link for the purpose of selling, soliciting or promoting by someone that has ownership or other "vested interest" to the web site involved, including efforts to promote other online forums or web sites by web site owners.
If you are a web site owner and have a link that fits into this category that you want to share, please submit it to our resource directory and we will review your submission.
Links to helpful web sites (commercial or otherwise) are allowed when they are posted by someone without any "vested interest" AND whose purpose is NOT to solicit, advertise, promote, fundraise, etc.


However, you are very welcome to stay here and give and receive support: just don't promote your website.

cool

Ivy

Post Edited By Moderator (ivy6) : 2/13/2009 6:35:25 PM (GMT-7)


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 2/13/2009 3:41 PM (GMT -7)   
Thank you for posting that :) I love when people with Crohn's keep a diary of what is going on. I think it helps more than we'll ever know.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 5 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 2/13/2009 4:10 PM (GMT -7)   
And on a side note after reading all of it, I saw a lot of mistakes made that every single newly diagnosed crohnie seems to make: eating the foods we missed from our lives pre-crohn's after literally nearly starving death.
Beer and brandy seem like they would do quite a number on the gut though...the yeast in the beer would do me in for sure!
It was really interesting to read though. There are common elements in there that I think all of us can share e.g. I didn't lose the love of my life, but I lost a lot of friends.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 5 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


BuzyBum
Regular Member


Date Joined Feb 2004
Total Posts : 122
   Posted 2/13/2009 5:47 PM (GMT -7)   
Just read your crohns blog, I could relate to so much of that, esp the idiots at the DWP. Had to ring them today to tell them I'd not recieved some form that I was expected to return, so they have stopped my insurance stamps, only to be told that not only had they sent me one, they'd also sent me a reminder. I can tell you now, they flipping well haven't!!! One getting lost in the post maybe, but not two! They've not sent me anything! I did a double check of everything they have sent me and nothing has been sent. I'm getting fed up with it, I seem to be in the same boat as you as to which benefit I am entitled to. I eventually got income support, but even now I am not sure if I am on income support or incapacity benefit.

Other bits I related to was a complete irrational thought when I came out of hospital that one day I might end up in prison and how much I couldn't handle that, even though I do nothing that would land me in prison, I was thinking what if there was a miscarriage of justice and I was banged up for something I didn't do? lol. I was only in hospital for 10 days haha, but I've been in for a total of 30 days since last July. It's a nightmare, as soon as you go into hospital they treat you like a moron and suddenly things that you've managed to do all your life fine on your own, are suddenly DANGEROUS to you. Also they think that you don't care if complete strangers see you naked or hear all about your personal business.

As for losing friends, hmmm, well when I was in for 14 days in October I was quite surprised at the people who actually got off their butts and came to see me, and the people who I thought gave a darn didn't bother. But when I was last in, hardly anyone came to see me, and that really made me realise who my friends were. I had two visitors, 3 if you count my daughter who was up for the weekend.

I've been told I might need a permanent illeostomy, to which I am refusing for now and trying to get better using meds, but I can also relate to how you feel about body image and someone not wanting to be with you because of it. I'm abit older than you (I don't look it ;) hehe) and I worry that I'm getting past it as it is, without that as well to put any potential partners off. I can't imagine how you tell someone something like that, or when. I think it must be easier for men with an illeostomy to meet a woman, because maybe women are more sensitive and would perhaps enjoy looking after someone, obviously not all women, but more women than men, I am aware it wouldn't bother some men. I just have this idea that most men would be completely put off by it from a sexual point of view?

Anyway, I enjoyed reading your blog, and can relate more as you're from the UK as well. How are you doing at the moment? Have you any idea when your illeostomy will be reversed?
37yr old woman UK. Diagnosed with crohns in 95. Currently on 2400mg asacol, 100mg Azathioprine. Been on Remicade once which worked well for me, but they took me off it. Flared up again. Took Humira but it didn't seem to agree with me, but thinking it was now an infection rather than side effects from Humira. Now back on Remicade, had 3 infusions so far and no reactions as yet. Consultant wants me to have a colostomy bag fitted, I've refused and want to try as many options as possible. On Elemental 028 extra diet for 6 weeks.

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