I have not written in awhile, as I have been really struggling with my health.
Thankfully, I have a wonderful, compassionate, and concerned GI doctor. I was not sure what to expect when I went to my last office visit, previsit poem was even written as my last blog entry. The visit was a difficult one to process, but I was relieved with the care presented by my GI. He was very thoughtful and sincere during our discussion and truly seemed to grasp the ordeal that I was, and still am, experiencing.
A plan of action was determined, together I must add, as a shared decision. Can't help but LOVE feeling respected as a person fighting an illness, instead just a patient or case. Leaving the visit, I felt hopeful that we were about to embark on some improvements. A 3 step plan was put in action:
1) Small Bowel Follow Through was scheduled to ensure that my small bowels were not impacted with motility issues. We already know for a fact that my large intestines are not functioning. They came back within normal limits! YES!! (If they did not, my options would dwindle even further.)
2) Try Mestinon. Through discussions with my GI and my own research I knew that this medicine was a long shot. It is not FDA approved for colonic inertia, but sometimes is tried for it's off label purpose. If it worked, I might could avoid surgery.
3) If I passed the Small Bowel test and Mestinon did not work, I would most likely be looking at surgery.
Well, I gave Mestinon a try. And let me just tell you, it was absolutely HORRIBLE. I wasn't surprised that no improvements were noted, but was very surprised at how dreadful the side effects were. I had blurry vision, dizziness, muscle pains, headaches, increased nausea just to name a few. I started taking the medicine on Wed with the plan of increasing the medication on Monday if there was no improvement. I knew immediately that this medicine made me feel even more awful than I already was. Was that even possible? I gave it until Friday. After falling down the stairs from a dizzy lightheaded spell and weakness, I emailed my GI. He contacted me back immediately and via our online conversation, I could tell that he was concerned about these side effects. I literally suffered through the weekend.
Monday morning I received an email from my GI just to check on me. How amazing is that! I was feeling so low and awful, but my GI reached out to check on me first. I can't even begin to explain how much that little gesture meant to me. In the midst of our emails, he gave me permission to stop the medication if I was not seeing any improvements as the side effects are not known to improve with time and were severe. He let me know that he would be consulting with his colleagues to be certain that there was nothing else left to try. In the meantime, I contemplated what to do about the medicine. I felt like I was truly torturing myself, stuck in bed for the majority of the day just to rest from extreme fatigue and avoid how terrible I felt, BUT I was determined to prove to myself that I was giving the Mestinon a fair chance and that I was being a "good" patient.
Thursday morning I awoke and decided without a doubt I was finished with that medicine. I could not physically handle it anymore. To my surprise, I received a phone call within 15 minutes of being awake. I didn't think anything of it, until I heard my GI's voice on the other end of the line. He instructed me to immediately stop the Mestinon, I didn't have to prove anything, and more than enough time had been spent trying this new medicine. He had kept his word and talked with his colleagues and stated surgery would be the next plan of action. He didn't wait until my next clinical visit to tell me, he didn't send me an email (which would have been appreciated), instead he actually went above and beyond and unexpectedly CALLED me to explain the situation in detail, see how I was holding up, and to see if I had any questions.
I don't know about others, but considering surgery can be a scary experience. In my case I will be having a total colon removal with possible ileostomy bag. Even though I have known that this would be a possible scenario, even though I feel at peace with having the surgery so hopefully I can regain some of my quality of life, having a GI that actually genuinely cares and takes the time to contact me (whether via email or phone) makes a huge impact.
This journey has not, and most likely for the time being, will not be an easy journey. However, I will survive! I have a wonderful support team that includes GOD, my family, my friends (especially the ones I've connected with online) and a MEDICAL TEAM that makes me feel valued and comfortable. What else can I ask for?
GOD is in control!
GOD has his reasons!
GOD is continuing to provide rainbows during my storms and provide loving people to help me along the way.
It's so inspiring to know how much a simple gesture of kindness can improve even the darkest of days.
I used to dread going to doctor's appointments
Procrastinating until I could wait no longer.
Not wanting to admit my personal short-comings
Thinking handling them on my own would make me stronger.
But a few years ago things drastically changed
I could no longer face my ailing illness.
Forced to reach out for medical help,
My apprehension and debilitating symptoms left to hang in the stillness.
From the hospital experience I quickly learned
That receiving support and care was completely okay.
SOME doctors truly have a heart and compassion,
With Concern and Empathy clearly portrayed.
The positive connections
Helped me return to my feet.
Trusting in my doctors
Made my illness-related anguish appear obsolete.
Then my illness took a turn for the worse,
Medicines and treatments, no longer effective.
Everything I try failing at creating any noticeable improvements,
In fact my whole digestive system seems to have become defective.
I attempt to keep trusting in my health team
But must admit I'm discouraged or anxious with some.
It's hard being dismissed, ignored, or left with no options
Accepting that no relief or answers may come.
I have an upcoming appointment again this week,
I honestly don't know anymore, what to expect.
Will I be heard? Will new treatments arise?
Until then, my worries & symptoms I must redirect.
We are told that we should not fear death,
but have you ever been scared because fear is so far away?
Sometimes I sit wondering what is wrong with me,
as thoughts of dying, disappearing, vanishing are just common thoughts during my day.
I have no desire to end my life early.
I'm not going to take my life in my own hands.
It's just I sometimes feel so numb, almost non-existent.
And just wishing anything would help take away all of my pains.
It becomes so tedious and difficult pretending to be okay
Trying to stay strong for my kids, and not appearing weak.
Confusion and peace often wresting within me,
especially when times seem to be so very bleak.
Memories of my last ER visit, floating around and around in my mind.
My mom and I both thought I'd reached the end of my time.
Moaning and squirming with intense pain,
Praying for my kids and loved ones I thought were being left behind.
I just NEEDED THEM to be COMFORTED,
I WANTED them to KNOW that I was at PEACE.
I PRAYED they each knew how much I LOVED them
And that my LOVE for them would NEVER EVER CEASE.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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