My journey with Crohn’s disease started after I was diagnosed in 1988. Crohn’s disease if anything has made me “the strongest woman I know” as my children have said. It’s hard to plan ahead when you live life day to day due to pain flare ups. Crohn’s is often called the “invisible disease”, because you can look perfectly fine on the outside and have a war going on inside that no one would ever know about. I used to take 33 pills a day, I was on a very high dosage of prednisone 160 mg a day to prevent my flare ups, however that causes many problems and side effects. My symptoms of chronic fatigue and severe joint pain have been difficult to manage throughout my journey. I had 30 major surgeries mostly resections and currently have an ileostomy bag. I am now on Remicade infusions every five weeks, folic acid, B12 injections, 50,000 mg vitamin D, and pain meds when needed.
I moved to Texas five years ago from Maryland. I had top-notch doctors in Maryland, however coming to Texas was a great ordeal in finding someone who could treat the severe Crohn’s disease that I have. I have United healthcare as my healthcare provider and so far they have been very helpful in making sure I have the proper healthcare for my illness. I have two sons who are in their 30s, and I was sick their entire lives. However, they were my focal point that gave me the desire to live when I no longer wanted to, because of the pain & suffering I endured with Crohn’s. As children and now as young adults they have always been supportive and rallied around me with support as have my entire family and close network of friends. I find that there are times I feel mentally strong and at other times I have such terrible anxiety that causes severe insomnia as well. I do take an antidepressant and I feel it helps me a little. I still have moments of great anxiety that I really don’t even talk about, because I don’t have any control over it. The greatest thing that ever happened to me was joining support groups of people who understood my same exact pain and issues that I dealt with from Crohn’s. Support from your family, friends, employer is so very important but in many instances for some it’s hard to find. I encourage people to reach out to support groups and learn from others, so don’t feel like you’re alone. I’ll never forget when I read that someone mentioned they would lay on the bathroom floor in a fetal position and rock themselves to ease the pain.
When I read that I immediately had tears just streaming down my face, because I did the exact same thing. It was like an instant connection, because only someone who feels that excruciating pain can understand someone else’s pain. I know that I was given this journey so that others can see and I have never let Crohn’s win! The battle is not easy and it has knocked me down several times. I had 250 emergency room admissions in one year which was hard and painful, but I understood later on that there is a purpose for my pain. I’ve been able to share my journey, my hope and even my fears with others to help them overcome theirs. I want people to see that they are not alone. Many people who look at us from the outside tend to judge and feel that we’re faking or looking for attention and even lazy, but if you educate them of how this disease affects our immune system those that love you will understand and support you.
We cannot allow ourselves to fall into depression, because it’s easy to do with Crohn’s disease. Whatever you do, keep going and find one thing to focus on until you can find more things that you can do and that you are grateful for in spite of your pain from this disease. Find a good support group to educate your family and friends, so that they can be knowledgeable about how to care for you and what you’re going through.