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Crohn's Disease
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Posted 12/4/2013 5:27 PM (GMT 0)
So I've always thought my life was too good to be true and was waiting for the other shoe to drop. Tadah...after a colonoscopy this morning g that they couldn't complete because of inflammation they diagnosed me with Chrohns and said I had fistulas too. They ate starting me on a med and said most people respond pretty fast, though I'm worried Cruz I keep reading all these horror stories. I was in tears...I suspected UC so I thought I was prepared but I just broke down in post-op and one if my nurses came in to telle about her having g UC and her experience.



Right now I'm really scared because I just started a new job....literraly my 90 days was last week and my insurance kicked in Sunday thank the lord. But I've missed work all week and many days over the last month....it started diarhhea that I thought was too much Halloween candy since I'm usually a super healthy eater then went down hill till there was so much blood and pain and I went to ER the day my insurance kicked in. Scared these meds won't work soon and I'll lose my job...thus losing my insurance. I'm also the breadwinner, so I can work I can't pay off students t loans credit card..rent! Well be evicted and credit screwded and there goes life. My husbands dreams will be down the toilet if I get worse and scared he will resent me...though he says never and is really supportive so far.

I just want to rewind to a few months ago and figure out what I did wrong....
Posted 12/4/2013 5:38 PM (GMT 0)
First of all wifeofmars you did nothing wrong. You didn't do something to get this disease, nor could you have not done something and you would not have been diagnosed. It is hard not to go through the blame/why me/ anger feelings. I know we have them in this house at times too.

I am glad you now have insurance easing one major burden many of us struggle with. Focus on your health, create a support network of friends & family, and start learning about Crohn's. Having a group like this I have found to be very helpful as we are all going through ups and downs in different stages in our lives.

Have they determined which drug (s) you will be trying? Hopefully you get to go home out of the hospital soon!
Posted 12/4/2013 5:52 PM (GMT 0)
For many people with Crohns there is a trigger. Some people it is foods others it is stress..there is always something.

The best advice someone gave me is an elimination diet. For many people with Crohns, popcorn, corn, beans, coffee, alcohol, tomatoes can be a trigger. For me it is anything in the bean family and that includes soy, which is in almost every processed foods. Also Alcohol, coffee are triggers for me. Once you find the triggers then life gets a little better. Then it is finding things that calm your crohns, for me and many others, cannabis seems to calm down my crohns.

Hope you feel better soon! Try not to sweat what you cannot control.
Posted 12/4/2013 6:02 PM (GMT 0)
They started me on cipro and flagyl Monday in case it is bacterial. Not sure what they are starting today....hubby went to pick it up and I can't read this writing
...starts with an L and ends with a da. And a 1.2

I quit gluten and dairy a few days ago...heavy dairy like cream has always given me mild issues and my mom is sensitive to wheat. Wanted to quit sugar too, but then I had to do the miralax prep and drink juice. I'm having g a hard time figuring it all out since I'm vegetarian too. If there's the slightest chance it will help a bit I'm all for it. Gonna start yoga again....the last few months the have Ben really stress full so I haven't been exercising or sleeping well.
Posted 12/4/2013 6:17 PM (GMT 0)
It sounds like Lialda. To be honest, that might not be the best med if you have fistulas. I would talk to the doctors about Remicade - it's a stronger med, but from what I understand, it's proven to be the most effective for helping fistulas heal.
Posted 12/4/2013 6:20 PM (GMT 0)
Aw that sucks. I see the GI Monday. The surgeon had called him and said that's what he would choose too. I was really hoping to feel a little better soon. Right now its the pain more than the going.

I may have meant fissures? Something that looks like lines on my colon. Sorry...I'm exhausted and on s pain med so not thinking super well.
Posted 12/4/2013 6:29 PM (GMT 0)
Lactose is definitely a problem for me during flares. I eat alot of old cheese to get my calcium.
Posted 12/4/2013 7:56 PM (GMT 0)
Yes it is Lialda. Holy cow its expensive! I'm about to be someone choosing meds or bills lol.

How long do these things usually take to start working?
Posted 12/4/2013 10:53 PM (GMT 0)
Lialda can take a while to kick in. A lot of them are. Did they not give you any steroids, like prednisone, to help kick-start everything? You'd eventually taper off of them.
Posted 12/4/2013 11:44 PM (GMT 0)
hey you'll get through this, theres always a light at the end of the tunnel. i think it just takes time to sort through all the emotions and stress's of this disease. we all have this disease for a reason. maybe it was meant to inspire someone someday and help them through a tough time, each of us has to find the reason in our selves. i just heard this saying from the movie "the book thief" and she said " somtimes when life steals something from you, you have to steal it back". hope you feel better and keep that chin up wink
Posted 12/5/2013 2:06 AM (GMT 0)
If you don't have prescription coverage and will have trouble affording the Lialda, then contact Shire, the company that makes it. You may qualify for a discount or patient assistance. Here is the link:
http://www.lialda.com/hcp/lialda-patient-resources.aspx Sorry you are going through this, but hopefully you will get on a good diet and medication regimen that works for you and you will feel better. Try not to panic. Most of us are able to remain working, and hopefully that will be the case for you too.
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