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NBR: Anyone have experience with Crohn's
I was diagnosed with Crohn's Disease back in February. Up until the last few weeks I haven't had many issues with it but over the last two/three weeks I've been pretty misserable. My doctor did not put me an any type of special diet, just meds. I've been doing a lot of research about maintenance and trying to figure out what my triggers are. Does anyone here have any experience with Crohn's? If so, what works/doesn't work for you.
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Re: NBR: Anyone have experience with Crohn's
austtx, my mom's closest friend here in austin has crohn's. i know that she is on a very strict diet that doesn't include dairy or gluten, and many other things. i can ask my mom if there is a way you can reach out to her.
i am so sorry you are going through this and that you have been so sick. many hugs, and T&P sent your way.
My SIL has a pretty bad case of it and she really has to be careful about what she eats. I know she limits anything with a lot of cream, alcohol, and caffeine. She eats a lot of pasta and beans. But, I've also seen her eat a burger and drink a beer. I don't know if she has to deal with the consequences later, though. She takes a lot of meds, too.
I'm sorry to hear about your diagnosis. I hope you are able to find some relief soon.
My sister has Crohn's and she gets bad flare ups whenever she has lots of stress. She actually quit her manager job at a grocery store and went back to school for something she really wants to do and since then she is doing much better. She is actually med free for the first time now in 10 years!
When she was first diagnosed, she quit smoking right away, which helped a lot. She does not follow any diet, but limits foods that are bloating (coleslaw, beans, onions, garlic etc.) and cut out all green veggies. This helped her quite a bit.
In the 10 years that she knows she has Crohn's now, she was hospitalized 3 times. She also went on a "health vacation" (paid for by your health insurance for 6 weeks in Germany - you go to a special clinic where you learn how to deal with it and take part in activities with other people dealing with the same thing like swimming, going for walks, group therapy sessions...).
I hope you will find the right things for you to make it easier!
A few questions
Did your doctor diagnosis it or a gastroenterologist? What tests were done to rule out other causes? Just because it "sounds" or "looks" like Crohns doesn't mean it is. What meds?
No matter what it is, I'm sorry =( I have lots of intermittant tummy troubles or "gastrointestinal distress" as I delicately put it at work with my gluten allergy. And I just recently accidentally ate the same glutinous item 4 times over 2 weeks and my body has not forgiven me yet...
DH has Crohn's... His is a somewhat interesting case in that it doesn't have a lot of symptoms (he gets to eat pretty much whatever he wants), but then when he has a flare-up, it's REALLY bad and pretty much requires surgery. He's had 2 bowel resections done already (one was in middle school and one was in 2006), where he just woke up with a hole in his intestine and had to have emergency surgery.
He does avoid foods that are *obviously* hard to digest - corn, nuts, etc. but in his case, he doesn't really have any trigger foods like dairy or gluten that make things better or worse. He's on daily meds (azasan) and then gets a Remicade infusion every 8 weeks. Since being on the Remicade (after his resection in '06), he's been amazingly healthy - the bloodwork looks like that of a 'normal' person, so we're hoping that this is a miracle drug for him.
He's happy to talk with people about it (I've given his email to a few other friends that have been diagnosed recently), so if you want to chat him up, just let me know!
alexluvstx at yahoo dot com
feel free to email me--my best friend has it and is happy to talk to anyone about it! she has had since middle school, i think? she does crohn's runs/walks and every year she works at a camp for kids with crohn's. she's very educated about it.
i have connected her with 2 people who needed to have questions answered and last year she went and met some people she had been helping over the phone or via email.
she is my inspiration!! she has a bag, but you would never know. she parties like a rock star and gave birth to 3 kids. one at 40!!
so don't hesitate to contact me at my email address. i am happy to connect you to her.
My family has a history of Crohn's on both sides (maternal male cousin and numerous paternal family members). I have always had stomach issues and in college they became much worse. I was tested for Crohn's but the tests were inclusive. To err on the side of caution, they put me on medication for Crohn's. I tried two different meds and both had side effects that I couldn't live with. My older cousin had a similar issue and she figured out how to regulate her Crohn's through her diet and exercise. I decided to do the same.
I wrote down everything I ate or drank in a small journal (one that fit in my purse). I wrote each day on a different page and then listed any symptoms I felt that day. After two weeks, I went back analyzed the days I didn't feel well. I then looked at what I ate to find triggers. I kept it up for about two months, also noting the days I was particularly stressed (stress is a huge trigger for me!). It really helped me figure out what foods I needed to cut out. My conclusions were most meat (all but fish), green vegetables, dairy, fried foods were the biggest triggers for me. I cut them all out for about 6 months and then started adding some in from time to time. I reintroduced most of them when I was pregnant (except beef) but I really tried to limit them as much as possible. I am thinking about cutting out dairy again because I am started to have more bad days lately.
Good luck! It is definitely manageable if you are willing to make changes.