This topic is inspired but the unfortunate news of yet another friend being diagnosed with Crohn's disease, Oh how I'm sick of receiving news about Crohn's, but that's another blog for another day.
If I could go back to my 20 year old self and provide advice for how to get through the suffering that is about to unfold, this is what I would say.
1. Express emotion.
When you find out you have just been diagnosed with Crohn's, it's ok to be emotional. This is one of those times you don't have to be tough. Those times will come, but for now let it out. Don't let someone tell you that "It's just the Prednisone making you emotional." NO!! Your life has just changed forever!!! Cry, throw ice at a tree, go running, journal, etc. Find a release for your emotion and let it out. *Please note that I am suggesting you find a healthy outlit.
2. Accept your circumstances
Once you have come to terms with this life changing news, accept it. Being in denial is not going to make you feel better. It will only lead you to party of pity for oneself that includes you and oreos. This ok for a day or two, but passed that, it's time to move on. Acceptance can be accomplished by researching about the disease, reaching out to support groups, talking to others who have been there done that. It helps to know what to expect and when you take charge you feel like you have some form of control back.
3. Learn to change
Your life will most likely never be the same again. At least, it wasn't in my case. If you have a mild case of Crohn's then Praise the Lord!! For you are blessed!
If you are like me and everything is chronic and severe, then learn to change. You will have to learn to learn to eat new foods or go without your favorite foods and like it whether you like it or not! Low residue, glutten free, liquid, and lean diets will most likely be apart of your future. *Note: This is the time to be tough and suck it up. It's for your own good.
A variety of concontions or otherwise known as Western Medicine will be injected into your body like you are some chemo patient. ***Be thankful you are not!!*** *Note: Time to be tough. You will take these as your doctor orders and you will go through a series of hopes and then failures until hopefully something works for you. Unfortunately, I'm not fortunate in that area as nothing ever seems to work. I pray you will have better success. You will learn to take your medicine from a divided container marked with the beginning on each week day so you can remember to take all of your vitamine, supplements, pills, etc. You will keep a calendar of your injections, if you have to have them.
You may also start tracking your eating habits and the effects they have on your bowl movements. In my case it didn't matter. I could drink water all day and still go the same amount as if I had just eaten a greesy pizza. *I don't recommend eating a greesy pizza. At least with the water there is less abdominal pain.
4. Always know where the restrooms are
This is a vital step in surviving Crohn's. It aleviates a certain amount of stress and if you can stay near them then that always helps too. I found it helpful to always have an "Exit" plan for wherever I was. Not saying I made it to the exit before my bowl movement made it to it's exit, but it helps to be prepared.
5. Diapers are not that bad
There may come a time when you have to lose your pride and summit to buying Depends. As a 21 / 22 year old, wearing diapers was a huge gulp of pride. Underwear was just getting to expensive and I was tired of throwing away my favorite pairs. Besides no one can tell unless you tell them. If anything they give an extra junk in the trunk to your flat hospital bed butt! Diapers were great for long road trips when I couldn't even go 5 minutes without going. They are easier to clean up when you have an accident and also prevent messes on car seats, your jeans, etc. They take off the stress of accidentally going in your pants. Once you get over the mindset of "I'm a 22 year old wearing diapers," they are not that bad.
6. Count your blessings
Things can always be worse. I find counting your blessings one of the most important steps to staying positive and motiviate to survive. Focus on what you do have instead of what you don't have. As bad as this may be, sometimes looking at someone's crappy circumstances can help you appreciate your crappy circumstance. Here are a couple of blessings off the top of my head: 1. You do not have cancer. 2. You can survive Crohn's. 3. You can have a "normal" life. 4. Crohn's can be controlled with diets and medicince. 4. You have supportive family and friends. 5. You can still work. 6. You have good health care.
You get the picture. Stay positive. Romans 12:12 says: "Be joyful in hope, patient in affliction, and faithful in prayer." Three important truths to live by.
7. Have Faith
This is probably my most important key to survival, but as I am trying to go in order by process, it is number 7.
I don't know what I would do or how I would survive if I did not know God and have a personal relationship with him. I cannot count the times that I have only had God to count on. At 3:00am in a dorm room, on the toilet, who are you gonna call? Ghost Busters?? I don't think so!!! No one is really there for you. You are alone. You are week. You are in pain. All you can do is pray you make it through the night, and in that moment you know God is there and you will see the sun again. I know God may not heal me, and I accept that, but knowing he is there and he has a plan for me through all of this does bring me comfort in my times of doubt.
James 29:11 says "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
Without his promises, I don't know how I can have hope. I think I would go into a deep depression and feel that all hope is lost, but with God "I can do all things for he strengthens me." Philippians 4:13.
8. Take control
Don't Let Crohn's Control You!! Make a decision to live your life as complete as you can. I know there will be days when you are so exhausted you can barely get off the couch except to sprint to the bathroom. Don't let this be your daily life. Strive to be involved in life. Do things with friends and family, even if it is for 30 mintues. Try a light workout such as Yoga. Just do something that makes you feel like yourself. Don't lose yourself.
9. Use this for the "Greater Good"
Use your disease to help others who are suffering. There are not many perks that you can receive from this disease that are greater than helping another who is in pain. Provide them comfort when they are scared of what is yet to be. There is nothing greater than helping someone else get through their daily struggles. It somehow makes all your suffering worth it, just to help that one person find some peace.
"Praise be to the God....The Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. 5 For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ." 2 Corinthians 3-5.
10. Spread the word
Tell everyone about Crohn's. This not only makes your life less stressful, but it also brings awareness and support for an incurable disease. The more people know about what you are going through the less they judge and are confused. The more accepting they are of your interupting bathroom breaks and the weird diets you are on. It just helps to get the truth out there. You feel better and people don't really care and usually love you anyway. If they can't accept this part of who you now are, then they are morons and not worth your time.
I hope this little Survival Guide can help you get started on your journey or help you understand what a love one may be going through a little bit better. As always, I wish you good help and happiness. God will be your sunshine through the rain.
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