Yesterday was a childrens hospital day for us, which means a Remicade Infusion day for my oldest daughter. My hubby took off work and stayed home with my youngest while my oldest and I had to venture out into the cold and snow and drive 1-1/2 hours to the childrens hospital. I was feeling a bit like spreading some Crohn's Disease awareness today...so here we go!
Crohn's Disease is an autoimmune disease, which means that my daughter's immune system is heightened dramatically, to the point of working so strongly that it attacks parts of her own body as if it were foreign. Crohn's Disease means that her immune system can attack anywhere throughout her GI tract, from the mouth to the anus. This disease in turn can also affect organs in the body, her eyes, her bones, and many other things. There is no cure to Crohn's Disease, so a doctor's goal is basically to try and find a medication that helps to put the patient into remission, which means that the Crohn's Disease is not active and running amuck. A remission is just like any other that you might know of, which means it can last a long time, or a very short time, sending the patient into a flare (which is the term use when Crohn's Disease is active within the body). When Crohn's Disease is active it can cause inflammation, ulcers, sores, abdominal pain, diarrhea, constipation, and many of things. Many times procedures and surgeries are required.
Remicade is one of the medications for those patients with severe Crohn's Disease that helps to lower the person's immune system, to help stop it from attacking the GI tract. Remicade is taken through an IV, which means that every 8 weeks my daughter has to go to the hospital, get and IV, and receive Remicade over a span of 3 hours. Sometimes when the process isn't going well, it has her 8 hours before we could start the drive home. Remicade specifically helps my daughter with the Peri-Rectal Disease part, which is the biggest issue for her. She was once hospitalized for this for a week because the ulcers in her bowels burrowed through her intestines, creating tubes from her bowels all the way through to breaking skin. Remicade prevents that for her, which is something I am enormously grateful for. The other parts of her disease, mainly throughout her bowels, is still in a flare, and we have struggled to find a good medication that suppressed the immune system to help in that way, which is why she is once again on steroids. There is only a handful of medications for Crohn's Disease patients to try, and we have just about tried them all.
This is a very painful disease that is lifelong. This disease is silent, and I believe the severity of this disease is a lot of times misunderstood. It can also be embarrassing for those that have this disease, as a lot of this disease revolves around bowels and stool. Please remember to take the time to let anyone you know that suffers from this disease that you care about them, it can mean the world to them on a bad day.