8 Ways to Live With Crohn’s

| November 12, 2015

1. Knowledge

It’s one thing to listen to your GI doctor about things to do and not do or should I say, eat or not eat, you have to remember most GI doctors do not deal with Crohn’s patients on a regular basis. This is why you need to bone up on what Crohn’s is all about, what the symptoms are, what the medications are, what the side effects of the meds are, just plain how life is going to be now that you have been diagnosed with UC, IBD or Crohn’s. Hit all the major association sites for info such as the Crohn’s and Colitis Foundation, Crohn’s and Colitis Foundation UK, and many others. But there is a small caveat. There are several sites that are owned and run by the companies that manufacture some of the meds you may be on, such as crohnsandcolitis.com, they are owned by AbbVie, Inc., the manufacturer of  Humira.  Is there anything wrong with this connection, I don’t think so, but you just should be aware. Again, do your research!

2. Google is not necessarily your friend

In contradiction to number 1 above, try not to google everything. One very interesting fact is that Crohn’s is NOT curable. You can only hold it at bay or remission. When you read that someone was cured of Crohn’s because they bought a juicer and now they are cured. Take it with a grain of salt.

3. You are what you eat

Some people who say diet has nothing to do with Crohn’s. Well, it can. Diet has something to do with every disease to some extent. Food can either aggravate, inflame, cause pain or it can heal, soothe and fight. Of course to how much of an extent it can do that depends on many of other things like severity of disease, the immune system etc., or what meds you are taking. But with an autoimmune diseases, nutrition is important regardless of what meds you are on. 

4. Explore intolerances

This is a scary part. You must test your limits with what you can actually eat. Whether it is peanuts, corn, legumes, green vegetables or even something as simple as a cup of tea (yes with caffeine). Also, sugar substitutes such as aspartame can actually cause flares in some patients.  Sometimes, it’s even just a matter of what you want to tolerate. You may love a nice green leafy salad once in a while, but are you willing to take the risk of a full on flare or are you able to handle the pain that may put you on the floor or on the toilet for hours to come? But with out testing these limits, how can you know. 

5. Pray

It’s no secret that I am a Christian. So praying is a daily thing for me. Sometimes an hourly thing. Now, I am not saying that you have to break out the candles, and call the prayer chain, but just simple prayers, asking for help; for strength for the day. There are many apps for your phone or tablet that can help with daily devotionals.

6. Read Fellow IBD-ers blogs

Sometimes doctors just don’t get it! That is another topic by itself for another post! But some doctors just don’t know what it’s really like to have Crohn’s kind of pain, those uh-oh moments when you have literally 30 seconds to get to a restroom. So, fellow sufferer blogs are a huge help. I’ve posted a list of links here of blogs and other resources that may help. I am constantly updating it as well, so you can check back often. 

7. Accept that you have Crohn’s or other IBD, it does not have you!

I learn many years ago to stop saying, “my Crohn’s”. Your condition does not define you. You are who you are long before this disease hit. Yes, there will be some changes in your life, but you can not allow it to control your life.

8. Accept that change can be a good thing

Sometimes we spend so much time focusing on what we’ve lost. Be it friends, nights out, heck just going to the store without a full ostomy change kit.  Some things just have to change. No booze, less MickyD’s, etc. It can be so frustrating that we can’t do what we did before that sometimes we try to do it anyway! Cue: flares and worse: guilt. The best thing (which I’m still no expert on) is to accept this is your life now and there are lots of positives that can come out of it. It could very well be that you are to help a new Crohnie deal with his or her situation and prove to the world that you are an overcomer!

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Category: Body & Relationship Issues, Crohn's - IBD, Family

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