Terror, gritted teeth, determination (in that order)

[PaulPhoenix]

Hello,
My name’s Paul and I’m 35 years old and living in Bristol, England. Despite having been told repeatedly that I only had a small chance of having IBD, I got the dreaded diagnosis of Crohn’s Colitis anyway.

It’s probably a familiar tale: years of ‘IBS’; the occasional bit of blood which was ‘piles’; and, finally this year, a flare combined with a good doctor who sent me for a tests ‘to be on the safe side’. The good news so far is that it looks pretty mild – a bit sore after eating, 1-2 BMs a day and no raised ESR/CRP. The bad is that the Pentasa doesn’t appear to be working yet (3 weeks) – ‘give it a couple more weeks’ is the advice. I’m pretty scared of the stronger steroids (I know - very lame), so am hoping to press for Entocort as a next step - but what do I know I guess?!?

Having read quite a few of people’s stories over the last couple of days, I must say how inspiring they are and how grateful I’ve been that people have bothered to write them! The best thing has been being able to see that people can live with the disease, and do stuff! I don’t want to give up yoga, foreign holidays, my pet parrot to name but three.

It’s good to have found you all. Hope to contribute as well as probably moan a bit :smile:

Paul
Diagnosed Crohn's Colitis June 2011
Pentasa 4g/daily

 

[David]

Hi Paul and welcome! I'm pleased that you found your way here

First off, it's NOT lame that you're weary of taking stronger steroids. I think it's quite understandable. They tend to have some side effects that can be tough so it's natural that you would feel that way.

Definitely don't give up the yoga or holidays OR the pet. While we may have IBD, we shouldn't let it own us.

All my best to you

*hugs*

 

[xJillx]

Hi Paul! I am sorry about your recent diagnosis, but I am glad to hear it seems to be a mild case. To be sure it stays that way, keep taking your meds, even if you start to feel 100% again! Also, if you find Pentasa not to be working after another few weeks, meet with your GI to set up a new action plan.

And just because you have Crohn's, you don't have to give up your favorite things! I always loved travelling, and I still do! I went to Italy, Greece, and the Caribbean since my diagnosis and had a great time! Sure, some days I didn't feel great, but overall I had great trips!

 

[sunflower]

It is great to be mild! Pentasa has worked well for me, but I always seem to need a boost from Prednisone every year or so. I hate it and don't blame you for wanting to avoid it. We are trying to avoid it right now by using enemas.

I don't really remember how long it took to get things on an even keel with Pentasa, but not too long. Hang in there! And definately do take your meds. When I think i can cut back, that is when I usually get in trouble, like now... Lol

 

[gypsigirl28]

Hi Paul and Welcome to the forum.. I'm also glad that you found all of us. From what I have read about Pentasa it some times takes a bit to start working where you feel results. Good luck

 

[PaulPhoenix]

Thanks to everyone for the advice!

Still not sure that the Pentasa has done too much but I had a go at the Crohn's Disease Activity Index calculator yesterday. Too complicated! I gave up in the end and used the Harvey-Bradshaw one which gives me a score of about 4-5 so it can't be that bad at the moment.

I'm sure I read somewhere that Crohn's Colitis was fairly rare and doesn't tend to migrate into other areas. Hopefully that's true and I can get the whole colon removed if it ever gets too bad a la UC.

I keep looking at my 11 week old son (first child) and praying he won't get it...

Oh, and what are we supposed to call ourselves? Crohnies? Don't like the sound of that really. Maybe that's being defined by it?! I guess we can all be grateful the disease wasn't discovered by Dr Doofus or worse

Paul