Crohns and Colitis Exchange

1. Know where reliably has fairly clean restrooms and no key. I tend to prefer fast food restaurants over coffee chains-particularly if it isn't my regular coffee stop (no key at that one-but sometimes a line)
   
2. Know the location of restrooms in all places you frequent-even if you don't usually need to use them.
   
3. Know the pattern of your bathroom trips-don't schedule morning appointments or meetings if you can help it if that is when your Crohn's is the worst.
   
4. Be honest with your doctor about insomnia and depression related to your illness.
5. Take your medicine at the same time every day. Really. Even one or two missed doses can cause symptoms to get much worse FAST.
   
6. Have a sense of humor.

Next?

I've had Crohn's disease for 24 years and learned some things along the way. I've never had a resection either, thank goodness.....
1-eliminate risk factors, meaning limit the eating out trips, the possibility of mis-handled food is big. Also, don't eat sushi (duh), don't smoke, or drink, as those are possible irritants. I also NEVER eat at buffets or work functions, you'd be surprised how many folks do not wash their hands, or pick up food (with their bare hand) and put it back. (huh??)
2-eat as healthily as your budget will allow.
3-take your meds at the same time every day
4-get plenty of rest
5-get plenty of water
6-have a healthy exercise routine
7-limit stress, meditation or prayer helps, so do friends who listen well.
8-plan ahead, that includes extra changes of clothes, what your're going to eat, vacations and the like.
9-get rid of the ego, everyone has gas, and those with Crohn's are sure to loose bowel controll, get over it.
10-be prepared to coach those you love that you just can't do certain things, or eat certain foods. It doesn't mean you love them less, just that you have the confidence to take care of yourself in the manner you need.
11-know your limits, there are days when you'll just need to stay in bed and sleep, it's OK to do that!
End. Of. Story.

- Fruits and Veggies/Health Food: There may be many fruits and veggies you can't eat but focus on those you can eat, look for other ways to get theses healthy nutrients try juicing, puree, peeling, baby food, it's still important to help you heal. Look for organic, sushi is good for me but may be a risk taken for you, its individual. If you can't have fiber try insoluble fiber (cream of wheat) might be better tolerated or low res diet, try a nutritionist.
- Supplements: Add a multi-vitamin and discuss supplement options with your dr, you may want to consider, b-12 shots if its low, iron if its low, omega 3, vitamin d, probiotics etc
- Eat healthy, highly processed, high fat, sugary foods aren't good for people with or without crohns
- Research/Support: Medication options and new knowledge in this area is constantly changing, keep up to date on the latest facts and medication options available to you. Try support forums, they have great tips and you might find someone in a similar situation as you, contribute as well to the topics.
- Understand this disease is unique: Everyone has different hings they can eat, different bathroom issues and different ideas on treatment, learn what works best for you.
- Understand you may still have bad days: Things may be good for periods of times but sometimes a bad day might occur, roll with the punches, you'll make it!
- Keep your doctor informed!: This is the best way to have the best healthcare to allow your dr all the facts about whats going on. Don't always go with the first opinion get other drs opinions if need be, also find a dr you are comfortable with don't feel bad moving drs.

I was diagonosed 10 years agao and it has been a mad roller coaster. You really have to listen to your body and pay attention. My biggiest issue now is getting my employer to understand I have bad days not often but hwen I do I can;t even get out of bed. Can someone offer some advise on this? Thanks

I had an employer that didn't understand some days were better than others. I brought her in some info and a book to better explain my disease. At first she really wasn't interested in reading about. I sat down with her and explained that I really enjoyed my job but if they weren't willing to understand and work with me when I had a bad day then I would have to find another job. She decided I was a great employee and didn't want to lose me. So she read the info and after that she had a better understanding and was willing to work with me when I had a bad day.

I was diagnosed with Chrons disease in 1993, when I had my first and only flare up. I followed, my diet closely, didn't smoke or drink, took vitamin supplements and kept doctor appts. Another thing I did was take a very pure form of fish oil. My last 2 colonoscopies showed no signs of disease. The only foods I avoid are very spicy recipes and Asian cuisine. Hope this info is helpful.

Thank you so much, I know I have many days when I feel like I need to just stay in bed and never do anything but sleep. I feel guilty and get down on myself. I now know that I shouldn't feel this now. Thank you very much

Talk to you doctor about this maybe he/she can put this in black and white so your boss may understand. Print info out and take it to your boss. Also talk to you docotr about doing a blood test that might show what vitamins you are low in. Then ask what type would be best for you to take.

I had the same problem and decided to go back to school for a job that I can now do on my own time and that I set my hours and decide what days I work and when, and for how long. I decided to do my schooling from home and at my own pace in a career that will help others. I have learned that massage can help with some symptoms also. So I recomend that anyone check into massage it could never hurt.