07-28-2009, 01:08 AM   #1
Sopdaws
New Member
 
Join Date: Jul 2009
Questions!

Hi,
I've just been diagnosed with Crohns and have been browsing the forum and thought I would post as everyone seems so friendly and supportive. Not knowing anyone who has this I thought it would also be helpful to speak to others as I feel a bit alone and confused!

I have been ill for a while as far as I can remember in one way or another with my stomach but the last 8 months have been unbareable with the pains, joint pain, sever fatigue and D. Like many other stories I have read it got to the point where I was to scared to eat for fear of the pain so wouldn't!

I went to the doctors who kept telling me I had an infection/ IBS etc. It was only because I pushed that they finally gave me a colonscopy and even then I had to wait 4 months for that, although I may add all my blood work were coming back as high levels of imflammation they still did not treat me! Anyway finally 3 weeks ago I had my colonscopy and got the diagnosis of Crohns with imflammation in both my large and small intestine! The hospital has now been very apologetic, however it is still very frustrating that it has taken so long! Has this happened to many people? Anyway good news is at least I know now and can start getting better

They have put me on Pentasa and pred which seems to be working but I still have the pain and my joint pain seems to have increased, is this normal??

They have also put me on a low fibre diet but I honestly dont know how long I need to be on this for! I have cut out wheat and dairy but I am not sure I have to - does anyone have any diet suggestions?? How long I need to do this for? It's a pretty boring diet! I have also cut out drinking but I am desperate for a glass of vino - will I ever be able to drink again? I'm a little scared to try incase everything goes down hill again.

One last thing! What is remission and how will I know if im in it? At the moment it seems like it will never happen....

Thanks for reading

S
07-28-2009, 02:48 AM   #2
GoJohnnyGo
One Badass Dude
 
GoJohnnyGo's Avatar
 
Join Date: Aug 2008
Location: Calgary, Alberta
Hello Sopdaws,

Sorry to hear you have Crohn's. Especially since it's occuring in more than one spot.

The road to your diagnosis is, unfortunately, all too common amongst us fellow sufferers. You are perfectly welcome to vent your frustrations here!

Many of us also suffer joint pains, as having an autoimmune disease can sometimes lead to others. Make sure your doctors know!

As for diet, I would recommend keeping a food diary/journal. Everyone tends to be different as far as tolerated foods. Mostly it's a process of elimination as far as diet goes.

I'm currently in remission, but continue with some auxilliary issues due to shortened bowel (due to surgery).

Key for me is to take care of your body but still enjoy life.

And welcome!
07-28-2009, 05:53 AM   #3
My Butt Hurts
Squeals-a-lot!
 
My Butt Hurts's Avatar
 
Join Date: Aug 2007
Yeah, diet is different for everyone. It's just trial and error. Some of us can eat popcorn, I will never eat it again. Some of us can eat onions, I can't. You may be able to have some wine with no problem. Once you are feeling well, give a glass a try and see how you feel.
I guess people define remission differently. It should be the absence of all symptoms, I guess. I feel like I am in remission right now, but I am about 95% symptom free, If I can live my life almost completely normal - that's good enough for me. I will always have Crohn's, and apparently my body would like me to remember that.
Welcome to the forum!
07-28-2009, 03:46 PM   #4
D Bergy
Senior Member
 
Join Date: Apr 2007
I was given acid blockers for my treatment prior to diagnosis.

Finally a real good Gastro diagnosed me in a couple of days. A good doctor is key to the whole diagnosis thing. Poor doctors are not worth the powder to shoot them with. We have plenty of lousy doctors around here.

Remission is when you feel normal. That is if you remember what that feels like.

Dan
07-28-2009, 07:01 PM   #5
Sparky
Senior Member
 
Join Date: Sep 2008
D Bergy - that's something that's occurred to me. I have NO idea what normal feels like. I've had 5 years of gut pain, D, joint pain, fatigue - what is normal?

I'm a happy camper when I have an occasional day with limited pain, I'm probably irritatingly bouncy/perky. I can't imagine waking up each day EXPECTING to feel that way,iyswim?
Reply

Thread Tools


All times are GMT -5. The time now is 10:33 AM.
Copyright 2006-2017 Crohnsforum.com