It's been awhile since I have written. Actually, I just checked and it has been a full month since my last post. During the past few weeks, I have been faced once again with the reality of living with a chronic disease. Most of the time, I tend to live in a blissful state of denial: I am not sick. I am too healthy to be sick. :)
Crohn's Disease can fool the best of us. Or should I say, the best of "you"? We appear healthy on the outside. Athletes, business men/women, active moms, dads, we has no "stereotypical" look. Oh wait-sometimes we do. When an intestinal flare occurs, if it is bad enough, we lose lots of weight, look really sick and pale. Then the doctors hit us hard with steroids to decrease the battle going on inside of our guts. The Prednisone has evil side effects (mood swings, facial hair, hair loss, acne), but my favorite is the big round "moon face" that we get. Some Crohnie's gain 15-20 pounds while on Prednisone for just a few months.
In any case, I don't look sick to most of those close to me. Most people would never guess that I have a chronic illness that will shorten my life. I like to keep it that way! :)
My last posts were full of good reports. I was feeling WONDERFUL and couldn't believe it. I enjoyed every bit of feeling great while it lasted. Unfortunately, things have changed. The joint pain that came on after my September surgery, has come back with a vengeance. Increasing my 6-MP kept it under control for a couple of glorious months. About a month ago, it came back. Each day it got progressively worse. I realized that I was having trouble once again opening bottles and writing. Sleeping has become difficult again because any joint that I lay on starts hurting and awakens me. The first steps out of bed or out of a chair feel like my feet and ankles are going to break in half. I could go on, but I won't. Let's just say most of the time I feel like I have the flu, along with the joint pain that accompanies it.
Recurring or new symptoms always mean more tests!
My GI physicians (I now have two of them) were on a mission to see if they were missing some active Crohn's in my intestines. This would "make sense" of my recurrent joint pain. First step, was a Wireless Capsule Endoscopy (camera pill). Before ingesting the horse pill, I had to drink a bottle of magnesium citrate. This part of the prep did not go so well for me. It landed us in the emergency room for a very long night of more tests/scans. My belly blew up and I looked about 7 months pregnant. The nurses laughed at me because they said I was so "tiny" yet looked like I was about to "pop".
I struggled through the rest of the prep and was deemed safe to proceed with the endoscopy. After a long and miserable few days, the test was complete. The results, however, were inconclusive. GI Number Two decided that an additional test was necessary because he could not see enough of the small intestine. So, as soon as I was recovered from the first test, I found myself (once again) in the hospital for several hours, prepping for a second procedure/test. Once again, my body did not do well with the test prep. Perhaps it was the 3 bottles of contrast I was required to drink! Three days of pain, nausea, and abdominal distention LATER...the doctor called with the "good news". After being almost certain I had another stricture in my intestines, the tests were all negative, reflecting that there was NO active Crohn's disease in the intestines.
Awesome news (ahem), but what about the fact that I am still gimping around like an 80-year-old woman? Second trip to the rheumatologist comes into play. The doctors have their pow-wow, and decide that it is time to bring out the "big guns" in the treatment of my Crohn's Disease.
Next week, I begin the biological agent called Humira. I will give myself injections every other week. This drug is a Tumor Necrosis Factor inhibitor. It will block my body's production of TNF that is causing all of this extraordinary inflammation.
If you want a good scare, just read the list of side effects for Humira! It is not something that you want to jump straight into without some good thought. However, we have now exhausted just about every other option. Yes, I have tried diet modification, herbs, and even acupuncture in the past. I have tried (and failed) the traditional oral medications for my condition. And no, Tylenol and/or Advil do not work. Not even close. Plus, Chronie's can't take anti-inflammatories. Oh, and prescription pain killers will take the edge off the pain, but wreak havoc on the rest of your system. They are a "no-go" for me.
With an auto-immune disorder, you must tackle the root of the problem or the side effects will not cease. For me, this means suppressing a whacked out immune system that perceives good things as foreign and goes into attack mode. I guess after my diseased intestine was removed, Mr. Crohn's moved on to bigger and better things: my joints. :)
And so, we embark upon a new adventure with biologics next week. It is not a decision that was taken lightly. Trust me!! If I could ditch all my medications and go the holistic route, I WOULD. However, that route would likely send me to my grave much, much sooner. Therefore, I rely on modern medicine. Modern medicine and prayer. I don't pray for a cure or for healing. That is not how I pray. The God to whom I pray has a grand plan for each of us. HE knows what HE is doing. Sometimes healing and/or "cures" are not in His plan. That doesn't mean I am not worthy of healing, or that I don't hope for relief. Of course I do. I am very strong and very stubborn. Not many things stop me from doing what I want to do in this life. I can still cycle 80 miles when I want to and if I am having a "good" joint day. As long as my joints stay in motion, they are happy. In fact, I am encouraged to exercise every day. But for me, it is getting harder to WANT to, because of the pain. If you know me at all, you KNOW that is a huge problem. :)
What I do pray for is peace on this journey. May I do what I am meant to do in this life and in the short time I am here. None of us are promised another day. May I always encourage others to give their best and not to give up when the going gets rough. I also struggle with feeling like a burden to my family and friends. I have the most wonderful husband who takes over more than his share at times when I literally cannot move. My friends and athletes are also the BEST. But I want to SEE them more, and feel well enough again to get out with them and take their calls in a more timely fashion. I want to be able to play actively with my boys again, and not dread even going up the stairs to their rooms!
Lots of things still left to do. Lots of love to give, goals to reach, dreams to build.
So for now...it is "back to reality" for me and Mr. Crohn's. But next week, the new fight begins. New treatment will start and you can believe that my will to get better is even stronger than ever. Look out! You should know by now....I. DON'T. GIVE. UP! :)
