New to Crohn's

Hi All,
I've been lurking here for a bit, and finally decided to post. I've had Crohn's since my early 20's. Had a bowel resection when I was 22, which they blamed on chronic appendicitis. Just this past year it got so bad that it was affecting every aspect of my life. I was bouncing between doctors for severe fatigue, joint pain, random rashes etc. My Oncologist was the one who had the idea that I was having an immune response. ( I had to see him for cancer 6 years ago. ) Anyway, off to a GI and boom ! I got Crohn's. 20 years later.

It's nice to at least know what I'm dealing with. The fatigue especially, my, (thankfully) ex wife used to get really pissed and accuse me of being lazy, which I'm anything but !

I used get "food poising" twice a year and was severely sick, coming out of both ends, severe pain and extreme weight loss after a couple of weeks. Emergency room visits were embarassing and usually ended up with a dose of mylanta and sent home. After a couple of years of that, I just didn't go. Took my own mylanta.

I just finished my load up of Cimzia, and so far I'm quite pleased at the results. I have energy again !!!! Thank GOD !!! My rashes are all going away or gone and the fatigue and joint pain are, for the most part, gone. Today is actually a bad day. Had a couple of drinks friday and saturday night, now I'm paying for it. I'd trade this for a hangover any day !

I've been pretty fortunate up until this point as far as health goes. I eat very healthy and lot, I think that was my saving grace. My friends used to call me "Chicken Gut" , if I ate, I pooped . The Cimzia is starting to help regulate things much better. I even gained a little weight. I've cut down on the amounts I eat because of weight gain, although I wonder if it was from the pred. I was on for a month.
Kind of funny, I was so happy to hear it was Crohn's instead of cancer coming back.....I guess it's all perspective isn't it, haha!
I'm still trying to figure out how to deal with it. I wish there was a set diet and boom, done. But everyone here seems to have different things that work with them, nothing really consistent. My GI wasn't much help with the diet side, he said avoid dairy, take your meds on time and you'll be all set. Hmmmmm.....seems to me there should be more to it. I'm going to wait a couple of months to see how the Cimzia does, then try food logs. I already know alcohol is on the list, that's been proven :ybatty:

This disease blows, and when I say blows, I don't mean your colon !

Hello and welcome to the forum, really glad you have decided to join Yes the Pred most probably had a part to play in the weight gain as it does give you a 'moon face' and also increases appetite and of course because it is also sorting out the inflammation food is no longer going straight through you. It is good to hear that the Cimzia is working for you and that you are feeling better. Keeping a food diary is definetly a good idea to help pinpoint foods that will aggrivate your tum.

Hope things continue to improve for you.

AB
xx

Hi neighbor! Glad to hear the Cimzia is working for you thus far.

Anyways, I've been keeping a food diary as well, and it seems to help me somewhat (although sometimes when I'm feeling really good I'll try a whole bunch of different foods that I haven't had in a while -- if I feel crummy the next day, it's sometimes hard to pinpoint what might have triggered my symptoms!). It definitely helps, although if the Cimzia really kicks in you might not be all that restricted, depending. I wish that there was a one-size-fits-all list of good/bad foods, but like you said, it really varies from person to person, and unfortunately there's a bit of experimenting/trial-and-error involved. Best of luck and keep us posted on how you're doing!

Thanks for the response and the nice welcome.
So far the Cimzia seems to be working. My body still seems to reject some things, but not consistently, so it's really hard to pinpoint what's what right now. My GI said to wait a few months for the Cimzia to really do it's thing and go from there.
I have a lot more good than bad days right now. The last few days have been brutal with fatigue, ugh ! I forced myself to go out walking yesterday and it's not as bad today. Not sure if it was the weather, being so damp, or something I ate, so very frustrating. I'm normally very high energy, and it's so hard when I can't meet what my normal day demands of me. :ybatty:
Do you guys also have the fatigue and sore joints ? Is that just how it is and nothing I can do ?

Greasy Pete said:

Thanks for the response and the nice welcome.
So far the Cimzia seems to be working. My body still seems to reject some things, but not consistently, so it's really hard to pinpoint what's what right now. My GI said to wait a few months for the Cimzia to really do it's thing and go from there.
I have a lot more good than bad days right now. The last few days have been brutal with fatigue, ugh ! I forced myself to go out walking yesterday and it's not as bad today. Not sure if it was the weather, being so damp, or something I ate, so very frustrating. I'm normally very high energy, and it's so hard when I can't meet what my normal day demands of me. :ybatty:
Do you guys also have the fatigue and sore joints ? Is that just how it is and nothing I can do ?

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Pete, that is what I find, somedays I can eat something, some days, NOT! It's frustrating to be sure. Glad to hear you are having more good days. The fatigue can come and go, unfortunately. Had your B-12 levels checked? Just a thought. And yes, during a flare, I get sore joints too. Not so much when in remission.

The GI did my blood and the b's were ok. I do take a b complex every day, I find i'm in a better mood with it. He did reccomend d , said that was a little low. The GI says the Cimzia should force remission, I hope so. I've been dealing with this for a long time, but it's never been so severe and lasted sooooo long.
Doing some reading here and it appears that the fatigue is pretty common. I'm hoping I won't end up in surgery, which was reccomended, I declined and went the medication route first, way too much down time for me to be away from my business. He says it's my ileum (sp)? Keeping my fingers crossed !
oh and thanks for the response Lynn