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New CD dx... and I'm scared.

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Crohn's Disease
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Posted 11/6/2008 12:32 AM (GMT 0)
Hello,

I've been reviewing a lot of posts and I desperately want to talk to someone who is going through something that I'm going through.  I got the dx about 3 months ago and I feel like i'm lost, confused, and scared.  I just want to know what lies ahead?  Has anyone tried natural supplements that work?  What meds should I seriously stay away from?  I'm taking lialda right now.

Posted 11/6/2008 1:04 AM (GMT 0)
Sorry to hear about your dx.

Make sure you are taking care of yourself.

Everybody is so different . What helped me was to take one day at a time. Keep a journal of symptoms.
Ask alot of questions and read all you can and be informed. Lots of good reading out here.

Be as healthy as you can. Eat right and excercise. I think taking care of yourself is one of your
first defenses. Also, make sure you are getting sleep.

Good Luck remember you are not alone.
Posted 11/6/2008 3:45 AM (GMT 0)
Welcome, sorry you have CD too. As LuckyStar said, we are all different. We have different symptoms and different meds/diets work for some of us. Keeping a food journal may help you track what foods won't work for you and helps you come up with a good diet plan. Read some general info (CCFA is a good source) but don't go nuts. There are some rare extremes to this disease that will likely never apply to you, so keep that in mind when you do read things. Also, don't let the posts here scare you. People tend to post more when they are feeling bad, so you see some of the worst here. When people are feeling good they are out leading their lives and check in less often.

Many/most people with this disease lead normal lives with short/temporary interruptions because of the disease. I've been in remission for several years (essentially no symptoms and no inflammation). I had only one real flare after diagnosis and controlled it with meds. Some people here have had decades-long remissions. I hope you will be in that camp.
Posted 11/6/2008 3:50 AM (GMT 0)
My biggest regret is not keeping a journal of symptoms, foods eaten, chemicals I was close to (Bleach, Gasoline...) and even when I walked by someone with strong purfume. I know most of these really set me off, and prolonged exposure begins GI symptoms, throws me out of remission, and sets of the arthritic symptoms, A journal works great because we Crohnies are all so different
Posted 11/6/2008 3:57 AM (GMT 0)
I was diagnosed about 8 months ago. I was/am disappointed, scared, confused. But you have to find peace and move on. I have things to accomplish and it's not going to stop me.

In choosing which meds to take and when, it helps to find a doctor you can trust . Immunomodulators and suppressors come with their share of risks, but there is a cost/benefit analysis. Become aware of the meds commonly used and their side effects. If your Crohn's is bad enough, I mean if you are at risk of obstructing or anemic, severely underweight, etc. then the benefit will outweight those side effects.

I have had success with enteral nutrition (liquid diet) and Entocort. Both are quite mild. For a while after my diagnosis I kept a journal of food and symptoms. I did not identify problem foods but monitored my progress with meds, and it helped me to feel more "in control."

The supplements I have used are omega-3 fatty acids (organic flax oil, fisol); folic acid; vitamin E; and probiotics, specifically VSL#3 and Primadophilus reuteri by Nature's Way.

Try to take supplements, exercise, sleep enough, avoid stress. It may help but definitely won't hurt.
Posted 11/6/2008 4:12 AM (GMT 0)
Like others have said:
Keep a journal for the food you eat and its reactions
Keep a journal of how symptoms progress or regress
Cry when you want you(it seriously helps)
Don't under any circumstances or noble feeling of obligation overwork yourself
Be extremely careful with your diet
Chew your food to liquid and drink plenty of liquid itself(preferably water)

There will be extremely difficult times, but nothing you can't survive. You've made it this far and I applaud you for it.

As for extra supplements, a good multivitamin with iron and folic acid definitely, omega 3 tablets, vitamin c if you're on any sort of immunosuppressant, and I take bee propolis for a natural supplement which seems to be helping.

Also, REST WHEN YOU NEED TO.

Overdoing it will do you in. It nearly did me. Light exercise is fine but stop when your body tells you to.

And of course, don't let other people bring you down. Especially those who aren't going through this. They have no idea what they are talking about so keep that in mind, keep no ill will, and, and always vent when you need to. If there aren't any people in your immediate area then feel free to vent here. There will always be people here to support you.
Posted 11/6/2008 6:33 AM (GMT 0)
Probiotics are a good first step in the right direction, IBDers tend to have bacterial over-growth so we need to replenish the friendly bacteria since over-growth of bad bacteria can exacerbate our symptoms...

as mentioned above, a very healthy diet daily (no junk foods, processed foods, animal fats, refined sugar, artificial sweetners, caffeine, as those can also exacerbate symptoms) and exercise in some form is better than nothing at all, even while flaring...

exercise promotes not only good over all health, physically and mentally but helps the bowels function properly as well, pilates, aquasize or a variety of yoga, even cardio and weight bearing exercise because those can help keep your bones stronger and healthy and can help stem off osteo and arthritis issues which are extra intestinal manifestations that can occur with having an IBD.

A lot of people with crohn's still lead very normal and functioning lives so try not to let your DX get into your head too much, it can do a number on our emotional/mental self as well, though regular exercise and a great diet can aid with those issues as well.

:)

Posted 11/6/2008 11:59 AM (GMT 0)
Hi Welcome to Healing Well this is a great place for support. I get B-12 shots once a month as alot of us have low B-12. I also take a vitamin to make sure I am getting my nutrients. Did you get diagnosed with mild crohn's? It is a bit mind boggling at first but I read alot here that helped. I also follow low roughage diet that helps. lol gail
Posted 11/6/2008 12:18 PM (GMT 0)
Greetings Twitch.

Glad you found this wonderful place. Here you will find the support you need to get through the rough days. Denial, anger, resentment, depression, confusion, sadness, weakness, pain, nausea, pooooooo... no matter what come here and throw it all out. These folks are GREAT!!!

Like everyone is saying, keep a journal. Since you are new to this, you do not yet know what your body will or will not take. I take a multivitamin, 2 - 4 dissolvable B12s, 1 acidolophilus and 2 - 3 Omega3 suppliments per day. I found out the hard way NOT to test the foods that us cronies are told to stay away from.

Establish a good relationship with a doctor, whether your PCP GI, whoever is treating you. Listen to your body, it will tell you when you need rest, extra nourishment, an ER visit, etc. Everyone IS different and this DD (Darn Disease) can make you quiet loony from time to time... but that's okay.

Good luck. Stick around.

PS: The search box up top, us it for all medications, symptoms, etc. The CD forum covers everything and you will find a post about anything you have questions on via that box. I guarantee it.

-Leslie


wink wink :-) :-)
Posted 11/6/2008 3:08 PM (GMT 0)
Welcome Twitch, I hope you and your doctor can figure out what will work best for you. It is scary after initial diagnosis, but taking it a day at a time, you will learn to manage your illness in a way that works for you and be able to move forward in life. Keep posting here whenever you have questions or concerns... we've been there and we are here to help.

Take care,

Betsy
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