The last two months have been terrible. You know that book? Alexander and the terrible, horrible, no good, very bad day? That's totally how I would describe March-May. Well, the parts of it I remember anyway. My brain has done a pretty good job of blurring most of it, which truly is a blessing. The other day when I was looking back on pictures from those months I started crying. It brought all of the emotions and physical illness back and I just feel so blessed that most of the time I don't recall all of the details.
Throughout this experience i have had so many people tell me that they appreciate my honesty and transparency in my posts. I feel like my life is generally an open book, and if someone asks me a personal question I am usually totally fine sharing. But for some reason this update has felt more personal and I have been hesitant to share it. But, to stay true to my journey thus far, I want to continue to be open in my updates.
Most recently I had an MRI-E. Which I posted about previously. When I went to my follow up appointment with my GI she said the results were miraculous! The MRI showed no inflammation in any part of my intestines. This means that for now, I am finally in remission. This was such great news to hear! It truly is a testimony to me of the power of prayer and fasting. I am so grateful for the many, many prayers and fasting that has taken place on my behalf. We went from dead colon, eminent surgery, to perfectly healed colon and a positive response to treatments. I don't believe that happened by chance. I'll admit my faith was wavering and I'm grateful for the people in my life who's faith was strong enough to help me through.
I get a lot of questions now, and I feel like more than one person probably wants to know the answer, so I will just post the answers here.
How are you feeling? Do you feel better? You look better.
-I think the word "better" is generally used to mean all the way fixed or back to normal. Which is unfortunately not the case. I am better in the sense that there is improvement, but I definitely am not back to normal. I asked my doctor why this was. I mean, if the MRI showed no disease, why do I still feel terrible sometimes? She laughed at me and told me, "you still have the disease! You were extremely sick and unfortunately that will linger for awhile." I still have moments where my stomach will cramp horribly (I've learned that ice cold water and ice cream are unfortunately triggers for me), I still don't go to the bathroom like normal people (I often joke that my life is a fine balance between miralax and Imodium), I still get tired frequently, when I get stressed I immediately start to feel cramping and a strange burning feeling in my stomach, my stomach is extremely sensitive to outside pressure so I find myself wearing lose fitting clothing and unable to hold my kids for too long, but worst of all has been coming off of the pain medication.
Because I was in so much pain in the hospital I was put on some strong pain medications. One I took twice a day and the other I took every six hours. I weaned off the the second medication without too many side effects, I had some nausea and headaches but that was it. Stopping the first pain medication has proved to be a little more tricky. It's withdrawal symptoms lasted approximately two weeks and included the following: nausea, insomnia (at one point I drove to Safeway at 3 am to get some zzzquil- unfortunately that stuff wasn't strong enough 🙄) headaches, crying spells, yawning (weird), phantom pain, tremors, and indigestion. Although I am extremely grateful pain medications exist and were able to make me more comfortable while I was sick, coming off of them has been far more unpleasant than I would have imagined. I have gained a new perspective for people with addictions. It has been such a struggle physically and emotionally. I had to keep telling myself the pain I felt is fake and that is really hard to do when you hurt, can't sleep, and have to lay in bed with a bowl next to you just in case you toss your cookies. The crying spells have been difficult as well because I know there is no reason for me to cry, but i can't stop. But I made it through and the only pain medication I take now is Tylenol when I need it!
What medications do you take?
-now I take the following: Imuran pill (immunosuppressant) once a day, bentyl (stomach cramping suppressant) four times a day, Budesonide (a corticosteroid used to treat Crohn's-it doesn't have all the nasty side effects that the prednisone had) once a day, probiotics twice a day (900 billion bacteria!!) and my remicade infusion every six weeks. On the side I take Pepcid to protect my stomach from the Budesonide, Tylenol occasionally for pain, and a vitamin with iron to help the anemia. These will be my medications for the next six months.
Generally, people with Crohn's are only on one treatment medication, but because my disease got so bad I take three. Over time we will be able to drop the Imuran and Budesonide so I will just do the remicade infusions. The infusions will drop to every 8 weeks and they will be life long.
What is your diet like?
- my doctor has opened my diet up so I can eat whatever I want (in theory). I am learning what I can and cannot tolerate and it's a slow and annoying process. So far I've learned that salad is out as well as a lot of bread in one sitting. At least for now. I'm trying to slowly work fruit and veggies back into my diet but it's difficult. I still avoid red meat, seeds, nuts, super spicy foods, raw veggies and berries. I can only eat about half of what I used to and sometimes I just don't eat at all because the prospect of getting sick is just too much.
When will your face be back to normal?
-this one cracks me up. Unfortunately, probably not for a few more months. Trust me, no one is more ready for it to go back to normal than I am. (As well as the nice bump on my neck called a "buffalo hump."
Will you need surgery?
-not as of right now. It is always a possibility for the future- as it is for all people with Crohn's disease, but hopefully not! I do still have the fistula though and that will have to be repaired surgically if it doesn't heal on its own in the next couple of months.
Do you have Ulcerative Colitis or Crohn's Disease?
-my doctor is fairly certain I have Crohn's. In my research I found that not having a definitive diagnosis is actually very common. Or sometimes the diagnosis will change over time. In two weeks i will do a video capsule test where I will swallow a little camera and it will take pictures of my insides. If it shows any scars or sores in my small intestine then it will for sure be Crohn's. If it doesn't show anything it's more likely to be UC but we still won't rule out Crohn's. So for now, we just call it Crohn's and treat it like its Crohn's.
I am amazed at all of the things I have learned in the past two months. I've been thinking a lot about trials and why we have them. Surely the Lord could prevent such terrible things from happening to all of us, but that's not the case. We are each here with our own set of struggles to navigate through. The last three months have undoubtedly been the hardest of my life, but I am a better person for having experienced them. Our Heavenly Father allows us to have trials to refine us, to open our eyes and soften our hearts to become the person He needs us to be.
I've been thinking a lot about Job and Joseph of Egypt. Both experienced trial after trial. An old seminary teacher of mine put it best when he said, "I've always been inspired by the story of Joseph of Egypt. Each time he succeeded he was dealt a difficult setback. How easily he could have turned against God and blamed him for allowing such horrible things to happen to him when he was trying so hard to do right. Instead he trusted that the Lord had a greater plan. Each difficulty moved Joseph a step closer to where the Lord needed him. But not only that, his difficulties had another purpose. They made him into the type of person that could see what the Lord needed of him when he got there."
My trials pale in comparison to what a lot of you struggle with, but I know they are molding me and humbling me to become the person the Lord needs me to be. My heart has been softened so I can more readily feel empathy for others, my eyes have been filled with faith to see the Lord's plan and not my own, and my mouth has been opened in gratitude and praise for Him.
We all have trials. We all have moments where we wonder if there is even a God in Heaven who even cares enough about us and our seemingly insurmountable trials. I assure you He is there. He listens. He knows you better than you know yourself. His only desire is to bless you beyond measure with heavenly blessings. But first, you must become the type of person who can see those blessings. I'm so grateful for trials. Not because they are fun, because quite frankly, they stink. But I know each one strengthens my relationship with my Father in Heaven. Each one opens my eyes to His blessings and His plan for me. I know He loves each of his children individually. I assure you He hears you. Keep pressing on. Don't surrender. Endure to the end. Blessings beyond measure await you. Paul said it best when he said, "I have fought a good fight, I have finished my course, I have kept the faith." (2 Timothy 4:7).
President George Q. Cannon once taught: “No matter how serious the trial, how deep the distress, how great the affliction, [God] will never desert us. He never has, and He never will. He cannot do it. It is not His character [to do so]. … He will [always] stand by us. We may pass through the fiery furnace; we may pass through deep waters; but we shall not be consumed nor overwhelmed. We shall emerge from all these trials and difficulties the better and purer for them.”