chronic illness

Mission Aborted

 

When Routine Procedures Go Wrong

Yesterday I arrived bright and early at the hospital in Charlotte for my colonoscopy and EGD. Having dealt with chronic GI issues over the last several years, this was going to be my third colonoscopy and fifth EGD. I have Celiac disease but do not test positive on the blood work so I have to have a regular EGDs to monitor but I don’t mind them because there is virtually no prep (just no eating or drinking) and with sedation, its quick and painless.

Colonoscopies on the other hand are torture.

The procedure itself isn’t the torture. Honestly once I get the IV without a nurse killing me, I’m golden. Its just the preparation that gives me anxiety.

Yesterday I shared my updated bowel prep survival kit and since I had to be at the hospital so early (and driving an hour after drinking the morning dose of prep juice would be hell), we checked into a hotel near the hospital with my survival kit in hand. I usually try to get the prep as cold as possible as it seems to make it a little easier to get down but our room didn’t have a fridge (hotel fail) so I kept it in the ice bucket until time to drink. I had the idea to mix the prep with apple juice (versus drinking a glass of prep followed by a glass of apple juice) and it really did make the drink more tolerable. I may not drink apple juice for awhile but it was really helpful in keeping the gagging to a minimum.

As I’ve said before, yesterday was not my first time in the colonoscopy rodeo and sucky as the prep is, it has always done its job.

Until yesterday.

The day started off on a high note as I scored an amazing nurse who got my IV in on the first try with virtually no pain. I was actually taken back for the procedures 30 minutes EARLY (does that EVER happen?!) and the anesthesia team and nurses in the room were excellent.

The EGD portion went off without a hitch and then they started the colonoscopy and hit a wall. Quite literally actually. And I learned firsthand about one possible colonoscopy complication.

The bowel prep was ineffective in fully emptying by bowels and the colonoscopy had to be aborted. Even though I followed the directions precisely (and given the amount of time I spent in the bathroom it seemed to be doing its job), for some reason the prep was just not enough and they were unable to continue.

I woke up in recovery very nauseous and crying. Not an emotional crying, just major tears were flowing. My first memory after waking up to the nurse wiping my tears with a cold cloth and wanting to throw up. They were able to give me a little Zofran to make the trip home a little easier. My doctor had met with my husband after the procedure but the nurse had left the procedure notes and discharge papers on my bed when she left to call for transport.

As I was putting on my shoes, I glanced at the papers and read that the colonoscopy was aborted due to poor bowel prep. The tears returned. To spend 12 hours in misery for nothing was a hard blow. The notes also read that a repeat colonoscopy is recommended so not only did I go through the prep for nothing but now I learned that I would have to go through it again? Heck no.

When the nurse returned, she noticed my tears and tried to help by explaining his notes. Despite following the instructions precisely, it seems that my gut is moving so slowly that it just was not powerful enough to get a thorough cleanse. For a repeat I would likely be required to stay on a liquid diet for 3 days instead of 1 and need to drink a more powerful medication. Awesome

It definitely was not the news I expected. I had expected to hear that my gastroparesis was just as severe (if not worse) than the last time it was checked. His notes cited no motility was noted in my upper GI so I am not sure how much the paralysis extends beyond my stomach. I had one gastric polyp that was removed and biopsied as well as other parts of my upper GI to check how my Celiac is doing and to check for other problems. I had expected him to say something along the lines of needing to up the amount of Miralax I was taking because of slow motility but everything else looked normal and biopsies were only taken to rule out Ulcerative Colitis and Crohn’s as a precaution. I was not expected him to say he had to abort.

The biopsy results will be in within the next few days and his office will call with the results and to schedule what needs to be done to follow up. In the meantime, I am started a medication to help with the slow gut and constipation issues directly related to using narcotic medications to treat my pain. He knows the complexity of my endometriosis and adhesion issues which requires pain management so he wants to try his best to work around it to provide more comfort (and function) due to resulting GI issues. The medication will not help the gastroparesis but it should help get things moving and provide some relief.

Hopefully I should have more information by the beginning of next week. I have an appointment to see a new doctor at the Womens’ Center for Pelvic Health on February 24th so hopefully between this appointment and the biopsy results and follow-up information from my gastroenterologist, we will soon have a game plan!

For now I am watching the snow fall outside and am trying to recover from all of yesterday’s “excitement.” I forgot how brutal the gas pain can be!

chronic illness

The Bowel Prep Survival Kit

Bowel Prep Survival Kit

Unfortunately I am scheduled for a repeat colonoscopy & EGD tomorrow which means I get the pleasure of attempting to survive completing a bowel prep.  This will be my 4th (and unfortunately not my last) time having to endure such torture.  So I thought I would share my wisdom that I have acquired over the years with you wonderful readers (after all at one point or another we all end up having the opportunity to share the joy of a colonoscopy).

This is what I call my Bowel Prep Survival Kit:

Bowel Prep Survival Kit

Essential items include:
1-Bowel Prep Meds:  These come in different varieties but all work basically the same.  If you have to mix the powder with liquid to drink, I highly recommend mixing it ahead of time and putting it in the fridge so that it gets really cold.  It seems to make it go down a little easier (you can mix and store solution up to 24 hours before your start time) Some people recommend using a straw. Whatever gets it down the fastest!
2-Apple Juice: Its a clear liquid with some sugar to keep blood sugar levels from completely dropping plus give you the sense that your stomach is full. White grape juice is approved as well – just no red or purple juice.
3-Clear Liquid of your choice:  For every 8oz of the bowel prep mix you drink, you chase it with 8oz clear liquid of your choice such as Sprint, Mt. Dew, 7up, light colored flavors of Gatorade, and sweet tea.  Be careful when making your choice!  Short story:  I used to love love love the yellow Gatorade but the bowel prep mix for my first colonoscopy tasted exactly like it so now I gag every time I smell the stuff.  So sad.  So you may want to stick to Sprite instead of your beloved choice just in case you developed some type of warped connection between the two (or maybe I am just a complete weirdo for making such a connection).
4-Popsicles:  My favorites are banana pops and lemon italian ice. Both are on the approved list and believe me you get tired of Jello pretty quick. I have always stuck to banana pops in the past but discovered lemon italian ice on this trip to the grocery store for prep supplies! Jello is also on the approved list. Colors to avoid are red, blue, purple, and green (basically any other color than clear or yellow) as they can dye your intestines which makes accurate viewing difficult. Popsicles must not contain yogurt or ice cream.

5-Moist Wipes:  Your butt will thank you.  I promise.

Items not pictures but highly recommended: Reading material, a stool to put your feet on (not sure why this helps but it does), and air freshener.

Of course clear chicken or beef broth (without noodles or rice) is on the approved list, but I will stick to lemon Jello and banana pops thankyouverymuch.

Now if you ever get the news that you will have to have a colonoscopy (or must have a bowel prep for some other type of surgery) you can’t say you weren’t prepared 🙂

Have you had a colonoscopy or have had to complete a bowel prep for another reason? Would you add anything to this list?

 

P.S. Be a spoonie girl scout & check out the Hospital Survival Kit & Flare Survival Kit to be prepared for what else life with chronic illness may have in store!

chronic illnessholidays

Finding Peace At Christmas

Today’s post is the last guest post in the Surviving the Holidays with Chronic Illness series and it couldn’t come at a better time! So often we can get so caught up in the hustle and bustle of the season that we forget to take the time to sit quietly and reflect on the true meaning of the season. Finding peace at Christmas and taking refuge in our Savior knowing the HOPE and PROMISE that was given to us to many years ago. Today’s post is written by Claudia from Until I Rest In Him so be sure to visit her blog! P.S. I am working on recovering from our trip to Disney and cannot wait to share our experience and pictures with you guys!

Finding Peace At Christmas

Almost within a week of having our Christmas tree up, something I could not quite put my finger on was calling to me. Every time I would look at the tree, something just kept calling to a part of me that I felt so detached from yet still something SO familiar.

As the days went on, and that “something” continued to call to me, I began to get creative visions. I would have visions of this beautiful tree that had a “woodsy” feel to it but yet still elegant. A tree that had earth tone hydrangeas throughout its branches and somehow had a vintage feel to it a tree I could keep up ALL year round that I could decorate to reflect each individual season.

I kept the vision to myself for quite some time as I allowed the feelings of confusion to stir. I slowly began to get clarity on what it was I was feeling more and more each day. Something inside me felt as if it were shifting. It felt as if there was a deeper part of me that was trying to communicate with me but somehow there was still this disconnect…and the more I felt it, the more I yearned to connect to…”it”.

I began to pray for clarity and ask God why this felt like more than just an idea I had to keep some tree up all year round. Why did this idea speak to me in a way nothing had in longer than I could remember? My mind was racing with what this was all about and how I would make this happen among the countless other thoughts whirling around my head…and then…a whisper…not in my ear…in my body…my whole body. It was an invitation to be still. Be still…and just allow the thoughts to whirl around…and see what happens.

I tried over and over and over again to….be still. I couldn’t do it. So, I continued to research on the computer all the elements I would need to make this “seasonal tree” trying desperately to piece together all the fragments of thoughts, ideas and feelings that would bring some wholeness to this…”thing” that was beckoning to me.

As I continued to ask for God’s help still not yet successful at being still, the pieces began to come together. Next thing I knew, I was finding discount stores online that carried the elements that once again spoke to me and felt as if they were each a missing puzzle piece in this creative endeavor…whatever it was to come to be in the end. From there I went on a website designed for independent artists to showcase and sell their work, found a bunch of very talented artists who made homemade gift tags that were just the right size and style, and went to town! I was thrilled to have also found a gorgeous handmade burlap tree skirt to match the burlap ribbon I used on the tree (For a list of the artists I purchased the tags from, as well as the artist I purchased the handmade burlap tree skirt from, scroll to the bottom of the blog post). I felt so blessed that God had given me the idea that if I decorated the tree with artistic gift tags, I could do the entire tree for EVERY season and EVERY holiday within my budget. Awesome! I had a BLAST picking these out. The tree was still decorated for Christmas and the research was just getting started but the creative juices were flowing!

Soon, Christmas had come to pass and the tree stood there completely stripped of all decorations and the only thing I had expressed to my husband was that I wanted him to please leave the tree up because I had an “idea” as I called it at the time. Now, to my husband this was music to his ears because at that point, he didn’t care what the idea was. All he knew was that he didn’t have to take the tree down and that alone was a wonderful idea to him! 🙂 

Day after day, my husband would see these small packages arrive in the mail from various etsy shops and discount floral stores online and my eyes would light up like a little kid…on Christmas morning. It wouldn’t matter what kind of day I had. When those packages would arrive, “it” lit up…that “thing” inside me came alive.

My husband had no idea what any of this was at this point. All he knew was that it all had to do with this idea I had to keep the tree up year round. Since I just kept the vision at bay with “you’ll see” as my standard response to any questions he had, he just let it go and said “ok, whatever makes you happy” Happy…hmmm. Well, it was more like…alive. I felt…alive. For that brief moment I held the packages in my hand each day they would arrive, and the vision began to take shape….something in me that had laid dormant day after day – would come to life. It didn’t matter that it was only for a short time. I still cherished what it felt like to feel something other than weary.

With each passing day, the racing, whirling thoughts began to settle down and were replaced with a peace…a silence from within where I began to feel what would be normal to describe as “lost” in putting this seasonal tree together piece by piece. What I find so ironic about that phrase is that this project allowed me to silence my mind. It allowed me to put the whirling thoughts to rest…it allowed me to find stillness…I FOUND STILLNESS….I FOUND SILENCE….only when I listened to the calling from within and allowed myself to get LOST in following the whispers did I FIND….MY SPIRIT.

The self-defeating thought I chose to believe was…

“A tree that you would leave up ALL year round…what?! That’s such a stupid idea. Only you would think of something so ridiculous like that. Besides, nobody’s going to get it. How are you going to explain yourself when people walk in your home and they see a tree up? Ridiculous. Besides do you have any idea how expensive something like that would be? Forget it already.”

If I were to allow myself to receive the gift of God’s grace and place all my faith in the Word, then in God’s eyes, the truth is…

John 10:27 (ESV)
27 My sheep hear my voice, and I know them, and they follow me.

Today I recognized Jesus…

Ok, not to sound like a broken record here but let’s look at this from another perspective. I had to LOSE myself in order to FIND my SPIRIT, right? Well, what’s even more intriguing to me is that I did it while putting together my first ever seasonal tree for…
Valentine’s Day

“Art enables us to find ourselves and lose ourselves at the same time.”
– Thomas Merton, No Man Is an Island

My spirit chooses to trust it’s intuitive nature and interpret that as yet another sign from God that this journey for me personally, at this time, is not about trying to be like everybody else and beating myself up day after day because I can’t seem to ‘join the crowd’. No, it appears to me that this journey is at this time, about learning to LOVE MYSELF THROUGH MY FULL ACCEPTANCE OF WHO I AM IN CHRIST.

In otherwise, it’s not my job or my calling to ‘fit in’ right now. It’s my job to…

‘make peace with the silence.’ MY silence.

It is MY personal belief that then and only then, can I begin to heal…REALLY heal. So, for me, putting those hearts up on the tree one by one, started off as just decorating the tree around a theme. Now that it’s decorated and I’m able to step back and take it in day after day, I see the irony of it all.

I cannot sit here and FULLY embrace that I am a child of God in one breath if in the other breath, I’m going to turn around and continue allowing this self-talk to weaken my spirit.

I MUST continue to pray EVERY DAY that God keeps me focused on the very thing that is giving me life…MY SPIRIT.

What’s another way to perceive our spirit?
AS THE VOICE OF GOD.

So, for me, it appears this might be the toughest part of my journey now…making a decision that may take me some time to surrender to. Will I continue to allow the voice of the trauma to define who I am…or will I accept and EMBRACE who I AM and ALWAYS have been in Christ…and listen to the voice of my spirit?

“I will no longer wound myself with the thoughts and questions that have surrounded me like thorns: that is a penance You do not ask of me.”
Thomas Merton, The Sign of Jonas

So, why did I not post this on Valentine’s Day?

Well, having gotten in the habit now of paying a BIT more attention to my spirit, I felt this post wasn’t quite ready. However, what strikes me about that is that Valentine’s Day itself is all about focusing on showing those around us just how much we love THEM…and that’s what it should be…on Valentine’s Day and EVERY day. I get that. I really do….but I have another theory as to why God didn’t settle my spirit in regards to posting this until AFTER Valentine’s Day.

As many of you know, Post Traumatic Stress Disorder (PTSD) can often rob us of feeling ANY LOVE for OURSELVES. Now, I know that sounds like a very selfish statement. I get it….but it’s not. Why? Well, because it is my personal belief that THAT is what MY journey is all about AT THIS TIME. Discovering who I am in GOD…REALLY embracing his unconditional LOVE for ME and learning to RELEASE all other thoughts that I am less than worthy of His love.

Closing prayer to Jesus:

Dear Jesus,
Wow. Between the creation of the tree which included hours of searching online for just the right decorations, creating and recreating the tree over and over again until it FELT in alignment with my spirit, the confidence I had to allow you to build within me to SHARE this endeavor, the photography and countless pictures I took before finding just the right ones to post, etc…(deep sigh)…AND the hours it took to not only write this post but again, tweak it where it felt it was in alignment with my spirit’s message….well, it’s safe to say this tree…this post…is ALL a TRUE reflection of MY spirit…of YOU living within ME.

I now call it….my Spirit Tree.

So, for that reason alone,
the tree is perfect…just the way it is…until St Patrick’s Day 🙂

“Make peace with silence, and remind yourself that it is in this space that you’ll come to remember your spirit. When you’re able to transcend an aversion to silence, you’ll also transcend many other miseries. And it is in this silence that the remembrance of God will be activated.” 
― Wayne W. Dyer

Personal Reflection

Have you ever had a moment where you felt connected with your spirit through a creative endeavor of any kind? I invite you to share your thoughts in the comments below!

 

Claudia De Mauro is a 42 year old woman with Spina Bifida/Chiari/Hydrocephalus/Tethered Cord Syndrome/Complex PTSD/Gastroparesis and struggles with extreme isolation due to the PTSD as well as the deep grief of being childless not by choice. Claudia is the author and creator of Until I Rest In Him (you can also find her on Twitter). The mission of “Until I Rest In Him” is to be the stepping stone on a path that leads another to trust in and rest in Jesus.