My vision was to write another detailed day-by-day post (like day 1) on my Mayo Clinic journey (which I still may do), but at 5:00am of a terribly restless night, a thought came to me. Maybe I’m supposed to be honest and write from my heart…

something harder,

something truer,

something now.

Back up to Mayo:

My Mayo Clinic workup for my 4 week stay was done in May. They diagnosed me with small intestine dysmobility with a more in-depth test they invented. It is a gastric emptying scan that lasts 48 hours, instead of the standard 4 hours. At the 6-8 hour mark, when food reaches the small intestine, mine slows to 0.1%. So it basically stops and produces painful bloating and enough pressure that I easily vomit meals and liquids.

 

My digestion is like a slow ticking bomb. I put food in my mouth, chew cautiously, and wait. I know in a few hours, ill be miserable and typically contents on my food stop and sit in my stomach 12+ hours until it comes back up. This happens mostly with meats and fats, so it was suggested from my gastroenterologist that I stick with foods that will move-push itself through. High fiber and water filled (aka fruits and vegetables) are my best bets.

Thats what I eat most of the time, but my body can’t pack in enough and sustain off of that long term no matter how many combos, smoothies or ways I prepare it. There comes a point where the body just needs protein and fat that I desperately crave, so I give in, but pay for it dearly. It can even produce a quick spiral of vomiting for a day or two, but then keeping liquids down isn’t even possible. I feel like I made a mistake and only the ER with an IV can fix it.

 

Even with just eating fruit, I typically wake up nightly. Or during the day I just suffer in silence and cover it up with a smile. The panic I feel is unquenchable. I know enough about the digestive system that the gut affects the brain, but now I live it. When food sits and rots, it produces bacteria and byproducts that seem to make my body mad. So anxiety has become common and doing anything to calm my mind has become a task I still am working on.

Without my faith, prayer and Gods love, I would be totally lost. Sometimes sitting in an empty church is the only thing that can give me a glimmer of peace, and I’ll soak it in. Honestly I have always loved sitting in an empty church. The cold breeze , the hard pews, the soft sounds of the creaking roof. But I never imagined myself at age 23 suffering from an incurable disease, clutching my rosary and pacing the isles begging God for not only a cure, but hope for my future. I want to rest in Gods love, but its hard when pain becomes so deep. Its in times like this that Faith is all I need.

Just keep going: 

As weeks went by, I noticed I was loosing weight, but I easily ignored it because external appearances are not as important and looks don’t defines us. If we were looking at my life’s goals, and accomplishments that I was checking off my list…I was going strong. I got throughout Mayo Clinic, got several diagnosis’s, started physical therapy, renewed my license, gained alittle freedom, started my Catholic Doula course, was able to participate in Church weekly, spent endless laughing times with friends and family, etc. I was participating in life again and became truly happy and alive.

But deep down God knew, the person who “seemed all ok” to her community was slowly sinking away.  I truly was happy in the moment but hunger was digging away. Literally too, my weight was plummeting. All the way down to 98 pounds on the night I stumbled into the ER. That is when I knew I had pushed it and no longer could I push my body so far.

People, church, and friends make me happy, its food for my soul, it makes me heart sing. But when the body rejects food, things start to malfunction. I felt on a constant wheel of not eating much so I band-aided that hunger and pain and anxiety with activity I saw was healthy and good. It definitely is very good to be social and get involved- but not when I would spend that night over my toilet and in the ER at 1 am. My heart for life is so big, I just love people and experience and running in the rain. I love petting sheep and sewing tents out of old sheets. I live for carving pumpkins and the smell of an apple orchard. But its simple science, when the body is “fasting”  for so long, it gets drained, and has no more extra energy.

Reality check:

The reality was that my system got progressively worse over the past 6 months so I developed several infections (due to lack of nutrition and a weakened immune system), ended up in the ER dehydrated a few times, and have spent countless hours throwing up. I waited patiently and filled out forms and copied hundreds of records to send to my insurance. My family, friends and I prayed and hoped for me to start this treatment and be on the way to recovery.

The grand plan my neurologist at Mayo Clinic prescribed me was to receive IVIG in hopes of recovering my nerves in the small intestine (he thinks my autonomic neuropathy and small intestine dysmobility are directly connected to an immune system malfunction). We waited and waited and got denied by insurance 2x even after providing detailed records and proof of my doctors successful studies in treating patients. Here is his research.

My sinus surgery #2:

On top of my digestive drama, I had to eventually go through with my second sinus surgery because my body was not healing over the bone from my January sinus surgery. We were hoping the IVIG would also help heal the missing tissue my body would not produce, but since that treatment isn’t possible I decided to accept a second surgery.

Every scope into my sinus showed about 6 exposed bone areas about 1 cm each. To me they looked like little teeth inside my head. It was hypothesized that bone would get infected more easily, but honestly my surgeon did not know 100% since she has never seen this before.

I was living off of antibiotics to keep the bacteria at bay, but my ENT surgeon at Mayo clinic decided it was time to do this exploratory surgery and try to get the mucous in my sinus to heal. When she went in she opened up the upper portion of the sinus to allow drainage but also “roughed up” the edges around the exposed bone internally to promote my body to heal it.

I still have yet to see if it worked long term, but I do have some hope. I was the first patient she had heard of with this condition, but thankfully she was confident in what she was doing. The unusual part was that several bones were exposed, along with the face nerve on that bone. Its all just hanging out, without any tissue covering it (you would not know by looking at my face- but if you stuck a scope in my nose- you would see it). During the surgery she even “wiggled” the exposed nerve to see if it does anything since that part of my sinus and face is lacking feeling.

After that surgery, I felt all ok. I shocked myself and my family with not a single need for pain medication because I simply didn’t have pain. I’m thinking this may have something to do with my autonomic neuropathy, why I cant feel pain much, but it didn’t work in my favor long term. I felt totally normal and took no time to rest or recover the days after surgery. I tried to go back to “normal life”.

In the moment: 

I remember the day it changed a few days after surgery and I was terribly hungry and craving protein. I ate some meat and the vomiting would not stop for days, and then weeks. My body had not felt the pain of surgery but went into overdrive or should I say my small intestine felt like it stopped completely so the pressure and food only came up one way.

The ER seemed like a good place to go day after day. The IVs unfortunately are not a fix for nutrition and the “weakness feeling” in my bones had set in. God is teaching me that my condition is so real and this time actually painful. There is no faking it, no running from it, no covering it up. I wake up with sunken eyes and a rumbling stomach. My mind gets restless trying to fight hunger as I hang onto hope for a new treatment.

My gastrointestinal system: 

I have tried many gastrointestinal treatments and was working with various doctors. I tried Zofran, anti nausea meds and was on pro-kinetic drugs (Reglan) for over 3 months. It seems to work at first, but then not only did the benefit stop, but the side affects became serious. I felt jittery, restless and unable to sleep. The day my lip and eye started to twitch – I broke down crying because I knew I had to stop the medication that I so longed would get my intestine to move (even a little movement was enough for me). In the world of science- these medications only help the stomach, but there is a “possibility” of it helping the small intestine. It felt like my last shot. Reality sunk in and my hope of ever finding a treatment to fix my intestines was shattered.

A new plan: 

I wasn’t ready to start at square one again, but now thats where I am. Since the IVIG Mayo Clinic treatment is not possible and the medication options their gastroenterologist has provided have failed, I am getting the nudge its time to look elsewhere. It was suggested I send my records to a motility clinic such as Johns Hopkins or Indiana University or Cleveland.

Johns Hokpins is where my gastroenterologist at Mayo used to work, before she came to Mayo. She saw several patients with gastroparesis but honestly never someone with small intestine dysmobility. Unfortunately my condition is more rare and treatments are ineffective so its all trial and error and just keeping symptoms manageable. I found a few medical journals and we went over logical treatment options together. This was one of the medical journals published on small intestine dysmobility back in 1998. We tried what they suggested but now its time to think of another option, to step alittle farther and trust that God will lead me to a new brilliant motility specialist.

God’s plan:

It took alot of convincing and heartache, but I think I’m now realizing God has another plan. I was not meant to do IVIG as good as it seemed. I was not meant to stay on a pro-kinetic medication forever. I was not meant to stay at Mayo Clinic forever.

I typically run at a full pace once I’m given the resources and energy, but this time God isn’t providing any extra energy. He has put up His strong hand and is asking me to rest (I’m not sure I even know how to rest, but it’s definitely time for me to learn).

I had to stop the medication, basically stop the small meals I was able to stomach and just be ok with what I “can” keep down. My body doesn’t want to work right now and if I fight it, its only going to frustrate me more.

So in the depths of pain and in moments where hope seems fleeting, I ask for help. I ask people to pray with and over me. I have faith. I plead with God to give my surgeons and doctors wisdom and to please place the new doctor in my path who will have the courage and knowledge to try something new.

However, as it is written: “What no eye has seen, what no ear has heard, and what no human mind has conceived” — the things God has prepared for those who love him–

 

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