Tag Archives: Ileostomy

Desiring the Healer more than the Healing

dandelion

One of the hidden gifts of suffering is empathy or “the ability to understand and share the feelings of another”. As my physical body continues to deteriorate and lose feeling, my heart becomes stronger and more sensitive. It’s a beautiful contradiction that shows, once again, how God is working out all things for the good of those who love him (Romans 8:28).

This empathy isn’t reserved only for people who are presently intertwined in my life. It gushes out whenever I hear or read about someone who has or is experiencing physical pain similar to mine.

Since the Bible is filled with stories of broken, pain-filled people, I’ve discovered that empathy plays a key role in scripture becoming personal to me.

I was reading in Acts 3, a story that I’ve read several times without feeling any emotional attachment to. This chapter chronicles the story of a crippled beggar who is miraculously healed during his encounter with the true Healer, through the apostle Peter. You can read it below for yourself;

“Now a man crippled from birth was being carried to the temple gate called Beautiful, where he was put every day to beg from those going into the temple courts. When he saw Peter and John about to enter, he asked them for money. Peter looked straight at him, as did John. Then Peter said, ‘Look at us! ‘So the man gave them his attention, expecting to get something from them. Then Peter said, ‘Silver or gold I do not have, but what I have I give you, In the name of Jesus Christ of Nazareth, walk.’ Taking him by the right hand, he helped him up, and instantly the man’s feet and ankles became strong. ” Acts 3:2-7

As I read through this story again, my heart caught in my throat at that last phrase… “instantly the man’s feet and ankles became strong.

My feet and ankles have not looked or functioned normally since I was about eight years old. The appearance of my feet in the past few years would send a “normal” person racing to the ER. I have a very limited amount of sensation in them and an even more limited amount of motion. I have poor circulation, so most of the time, my feet are a purple-ish blue color and cold to the touch. I have periodic neuropothy (similar to a diabetic foot), arthritis from previous operations, scars, and occasional nerve pain that is so intense it will cause my entire autonomic nervous system to overreact, leading to severe muscle cramping all over my body, numbness, headaches, etc.

feet

To put it simply, they are a burden. About two weeks ago, they became even more of a burden when I developed a tiny crack in the dry skin on my left heel. We had a cold snap up here in WI and temps were in the double negatives for a few days. This sudden drop in temperature caused the skin on my heel to crack open, which is not uncommon. However, because I cannot feel pain in that foot, I wasn’t aware of the crack. One morning I woke up and my foot felt different…different than my normal. My ankle felt like it had been bit by something and was having an allergic reaction. It felt hot and stiff and as the day progressed, the redness, swelling, and stiffness only increased.

Once I discovered the crack and realized what was actually going on, I knew that I needed to have it looked at immediately. While a crack like this in a normal foot would be painful and a nuisance at most, in my feet I knew it could quickly spiral into an infection that could put me in the hospital, surgery, or even an amputation if it wasn’t treated early enough.

After obtaining a last minute appointment with a local podiatrist and confirming through X-Ray that the infection had not spread into my bones or muscles, I was put on 24-48 hours of bed rest and two strong oral antibiotics, with the back-up plan of going to the ER for IV antibiotics if there wasn’t immediate improvement. Thankfully my body wasn’t resistant to the oral antibiotics (a risk because of how often I am on them for UTI’s from self-catheterizing) and the infection began to subside.

While the infection cleared, I began to have burning and stinging around my stoma (the opening in my abdomen where my small intestine “hangs out”). Since my digestive system now gets rid of waste before it goes through my colon, everything comes out in a semi-digested, watery state. The colon is what absorbs the majority of water and left-over nutrients, so when waste comes out of my stoma, there are still active digestive enzymes that can eat away the flesh on my abdomen. My body has adapted to this change, but when the oral antibiotics began to flush through, it aggravated my skin creating a 1/4″ of raw, open skin around my stoma. Needless to say it hurt quite a bit. It also made it difficult for my bag adhesive to stick, so while my infection was clearing, I now had a new issue at hand to deal with. On top of all of this, my right heel developed a crack in the skin as well.

All of this, because of something that is so “normal” for most people.

I tell you all of this in order to give you a glimpse into why I suddenly connected with this crippled man whose feet and ankles had failed him.

Out of empathy, I could imagine his excitement as he felt warm blood rush through his veins and strength surge into his feet that had felt “dead” for so long. But even more than that, I know the prolonged joy that would have come over him because not only did he experience healing, but he encountered the Healer himself.

Singer/Songwriter Natalie Grant had the lyrics to one of her songs in one of her Instagram posts. It said,

“Help me want the Healer more than the healing, Help me want the Savior more than the saving, Help me want the Giver more than the giving, Help me want You, Jesus, more than anything.”

Through this man’s story and because of the empathy I had toward him, God nudged me with a truth that I needed to be reminded of. God wants me to know Him and desire the healing of my soul more than the healing of my body. No, it’s not wrong to want physical healing, and I am so thankful that my feet are beginning to heal. But that can’t be my focus.

If you look back to the first few verses in this story it says, “When he saw Peter and John about to enter, he asked them for money. Peter looked straight at him, as did John. Then Peter said, ‘Look at us!’. “

This crippled beggar noticed Peter and John come into the temple, but his gaze must have shifted from their faces downward to the earthly possessions he could get from them, because Peter tells him to look at them. I imagine that he was also looking down, ashamed of what he was. I think Peter wanted the man to look at him in order to see the power of the risen Christ that was living in him. He knew that ultimately that is what the man needed in order to be healed and to restore his dignity.

So often, I let my gaze shift downward and I forget that growing my relationship with Jesus is my ultimate goal.

If you continue reading Acts chapter 3 and into Chapter 4, you come to verse 4 that says,

“But many who heard the message believed and the number of men grew to about five thousand.” Acts 4:4

The “message” that this verse is referring to is the message of the gospel that Peter and John were able to then share with the people who “were astonished and came running to them…” as a result of  witnessing the miraculous healing in this beggar’s life.

If this man had refused to shift his gaze upward to Peter and John, he may have encountered a small amount of money…maybe enough to buy a meal to temporarily satisfy his hunger…but he would have missed the opportunity to encounter the Holy Spirit who would reset the entire course of his life and in turn, touch five thousand more hearts that day.

I don’t want to miss an opportunity like that because I’m looking down.

Do you?

-Adri

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Chronic Hope

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(Printed in the Winter 2015 Issue of Just Between Us Magazine)

When you live with or love someone with a chronic illness, you soon learn that it requires you to make a plethora of unending decisions. When you reach the “D” section in your phonebook, the list of doctors seems endless. Some of these doctors are even programmed into your speed dial. Maintaining a “baseline” is important so there are tests and procedures that have to be repeated year after year after year. You experience physical pain week after week after week. There are questions and emotions that you have to battle day after day after day and sometimes moment after moment after moment.

 

Living with a chronic illness is exhausting. By definition it is constant, ceaseless, persistent, and unending.

 

One of the most challenging things for me about living with Spina Bifida is how many areas of my body it has affected. It affects my bladder, kidneys, bowels, legs, feet, nerves, and muscles. Recently it has begun to affect my neck and brain. I routinely see a neurologist, neurosurgeon, podiatrist, urologist, gastroenterologist, and physical therapist. On occasion I’ll see a shunt specialist, hematologist, and orthopedic surgeon. If I’m bored I’ll see my primary doctor.

 

Let me assure you that I know how exhausting it is. Especially when I stop to consider the fact that despite all of these appointments, there is no cure for my condition. Unless God decides in his infinite wisdom to heal my physical body, I will never “get better”. At most, I can attempt to maintain my current health for as long as possible.

 

This would be so depressing if it stopped right here.

 

But it doesn’t. God has provided a way for us, in chronic illness, to have chronic hope.

 

You see, God will use pain to develop you, but he never meant for it to define you. I have found that the days that I feel the most hopeless about my health are the days that I let my suffering become my sole focus. My whole purpose in living becomes wrapped up in trying to cure it, trying to maintain it, or trying to dull it.

 

On these days I have to take a step back and remind myself that God has created me to be so much more than that. I have to re-read passages in my Bible that fill me up with the hope that God is using all of this for something much bigger than I can understand. One of the things that I love about Jesus’ life is how he specifically chose people suffering with physical disabilities in order to display to the onlookers that he was the Messiah they had been waiting for. These broken lives mattered greatly to him and they became his tools in which his glory and power shone brightly. If you’re hurting today, my prayer is that that brings you so much hope and encouragement!

 

Not only does God promise to use your pain on a large scale, but he desires to use it in a very personal way too. He wants it to become the tool with which he molds you into a person that reflects everything about his character.

 

What would that look like? It would look like a person that is thankful for their doctors, patient with their caretakers, loving toward their family, and even joyful during their colonoscopy. It would look like a person who shows gratitude about the function they do have rather than grumbling about their limitations. It would be a person who cries tears of deep pain, all the while knowing peace is not based on the feelings contrived by their reality, but rather on the truth that God has laid out in the Bible.

 

It’s a person that I have begun to ask God to make me into. It’s a person who’s living with chronic hope.

 

2 Corinthians 4:16-17 says, “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.”

-Adri

To order Just Between Us Magazine, visit www.justbetweenus.org

 

 

 


Resolutions- “Whatever’s in front of me, I’ll choose to sing Hallelujah”

iPhone 762My “stats” page just informed me that it’s been three months since I posted a new blog entry here.

It doesn’t surprise me. I’ve been talking…crying is more like it… with God about a few things and have purposefully avoided writing. Not because I am scared to let you see into my brokenness, but because ultimately, what God has to say about it is what matters.

Sometimes I need to just stop and be quiet and listen to that voice inside of me that I know is God-breathed, because nothing in and of my human-ness would have formulated that thought in my head.

Promise came home from school, after returning from Christmas break, and announced (while standing on her chair, as she does with most of her “announcements”) that while discussing what “resolution” meant at school, she told her whole class what my New Years Resolution was.

My heart started racing. I broke out in a cold sweat as I frantically replayed in my mind, every resolution that I had mindlessly rattled off (serious or otherwise) over the past week. I’m not big on New Years Resolutions, but I am big on jokingly making them up.

Oops.

(Lesson learned. Promise is more social in class than I thought she was. I have no idea where she gets that.)

After coming up empty on what Promise could have possibly shared with her entire class, my anxiety was calmed as she said, “Oh you know Mommy, the one about getting an alarm clock and not keeping your phone on your nightstand.” *Cue a collective sigh of relief*

As is evidenced by the time stamp on this post, I am failing horribly at this “no electronics in the bedroom” resolution.

In the days and weeks that have followed that announcement, God and I have been having some more serious hear-to-heart talks about resolutions.

I’m not sure if it’s the fact that in 2 minutes I am turning 31, or if subconsciously my body just knows that it’s getting tired, but the weight of my health has been unusually heavy at the start of this new year.

I’ve struggled more than I ever have before with seeing friends and acquaintances experience physical healing in their lives, while my situation remains unchanged…if not worse. I’ve silently cried out the, “but why not me, God?” question repeatedly in my head.

If anything, I feel like my faith in God’s power to heal me is more confident now than it has ever been.

And the only answer that I’ve gotten is that that is not God’s plan for my life right now. Is he capable? Yes. The same power that raised Jesus from the dead, now lives in me. Of course he is capable. I believe that with my whole heart.

As my friend, Jill, so wisely shared with me a few months back; God has healed me. I can’t think of myself as being excluded from his healing. He’s healed me to the point that he knows I needed to be healed in order to accomplish his purpose for my life.

I am alive. I am walking. I still have my legs, as cumbersome as they may be. That is all a certain extent of healing that God has allowed to take place in my life.

It’s just not healing on my terms. Which is where faith and resolve come in.

The lyrics of this song by Bethany Dillon hit me hard the other day as the spilled out from my Pandora station while driving;

“Who can hold the stars
And my weary heart?
Who can see everything?

I’ve fallen so hard
Sometimes I feel so far
But not beyond your reach

I could climb a mountain
Swim the ocean
Or do anything
But it’s when you hold me
That I start unfolding
And all I can say is

Hallelujah, hallelujah
Whatever’s in front of me
Help me to sing hallelujah
Hallelujah, hallelujah
Whatever’s in front of me
I’ll choose to sing hallelujah

The same sun that
Rises over castles
And welcomes the day

Spills over buildings
Into the streets
Where orphans play

And only you can see the good
In broken things
You took my heart of stone
And you made it home
And set this prisoner free

Hallelujah, hallelujah
Whatever’s in front of me
Help me to sing hallelujah
Hallelujah, hallelujah
Whatever’s in front of me
I’ll choose to sing hallelujah

Songwriters: Leonard Winston Dillon
© Kobalt Music Publishing Ltd.
And so as I step into another year of living with all of this, my resolve is that “whatever’s in front of me,  I’ll choose to sing hallelujah”.
-Adri

 

 


Anything really means ANYTHING

My conversations with God have sounded a lot like this over these past few days;

Me: “So God, when you say “Do not be anxious about anything… you don’t really mean anything right? There are some really BIG things that it’s OK for me to be anxious about, right?”

Holy Spirit: “Nope. I really mean anything and everything.”

Me: “But God, you know the phone call I just got from my doctor the other day. I have trusted you with so many things in the past…I think I’ve earned being able to worry about this one.”

Holy Spirit: “No…really. I know you won’t be living my best for you if you worry about this. You’ll miss what I want to teach you in the waiting. I promise to give you what you need to get through today and that’s it. We’ll worry about the strength you need for tomorrow when you wake up tomorrow…”

Me: “Ok, well I’ll try not to worry but I probably still will. And besides, if I don’t worry, how am I supposed to pass the time between now and my appointment on July 22nd? I feel frozen, like this can’t be reality. My head feels like it’s outside of my body right now. How do I function feeling like this? All I want to do is sleep so I don’t have to think about it. And if there’s any way you could shut down Google between now and then, that would be awesome too.”

Holy Spirit: “Keep talking to me about this. Get into your bible and really see what I have to say about this. Ask other people to pray that I give you the strength and peace you need. Then when you are sleeping, people will still be praying. I’m not going to withhold peace from you. It is possible to have peace and still function during this waiting period. We’ve been here before… many times. Look how close we’ve grown because of it. Trust me. And DON’T Google it. Just DON’T”

This conversation started after a phone call that I received this past Wednesday from my primary doctor. I had gone in the day before to discuss night sweats that I’ve been having. They started after my spine fusion three years ago. They were sporadic and occasional at first but have increased in frequency and severity as of late. If I go 2 or 3 nights without having one, that’s a good month. And it’s not like I’m just getting hot at night. I wake up and my pajamas are wet, the sheets are soaked, and I can feel sweat trickling down my skin. So I finally decided it was probably good to have it checked out. Chris decided it was probably time, too… poor guy.

After my exam, my doctor and I agreed that there didn’t appear to be anything to be concerned about, but he’d run a complete blood panel, just to be thorough. During the visit we were able to rule out the possibility of the night sweats being caused by early menopause or my antidepressants. I left his office with us agreeing that it, most likely, was just my autonomic nervous system being its crazy whacked out self. During my last surgery, they hacked through some pretty major nerves and disrupted my nervous system quite a bit, so this explanation would be totally legit.

So I was a little taken aback when I received a voicemail from my doctor the next day,  asking me to call him back. “Nothing urgent” he assured me, but he needed to discuss the results of my blood panel with me.

When I called him back, he said that one of my white blood cell counts was moderately elevated. He asked if I had asthma or was experiencing any seasonal allergies? Nope. Could I have a parasite? Was I having Diarrhea? Well I have an ileostomy so that one’s a little tough to tell 😉 But no, I hadn’t noticed any changes in my stomach or bowel function. After we had covered all of those fun topics he said, “Well normally I might just ignore the elevated levels, but since you are having the night sweats that are getting worse and the fact that it started after your spine fusion, I think we should be thorough and have you see a hematologist in our oncology department. Sometimes this elevated type of white blood cell can indicate a underlying bone marrow infection or cancer.”

He gave me the name and number of the hematologist and as I hung up the phone and went back to blow drying my hair, the weight of everything that he had just said came down hard on me. Oncology. Hematologist. Bone Marrow. Fusion. Infection. Cancer. I picked up my phone and texted Chris. He called me right away and together we let all of those words sink in.

I knew his mind would be flooded with the same thoughts mine would because he was sitting right next to me four years ago when my neurosurgeon was listing the risks of cutting my spine in half and fusing it back together. He had explained that rather than grafting bone marrow from my hip for the “glue” for the fusion, he would take bone marrow from bone he was removing from my spine and ribs and mix it with a synthetic bone paste that in a very small percentage of people, was thought to increase the risk of cancer. But on the flip side, mixing this paste with my own marrow would provide a much stronger fusion and with my bones being as small as they are… we needed that.

Chris and I knew the risks. With surgeries that major there are always risks. But now all of those words came flooding back into our minds with a new urgency. In addition to this, I had mentioned to Chris about 4 or 5 months ago that there was an area of bone on my thoracic spine that was really tender and painful. It’s still there, but I had been ignoring it because … well… I mean they CUT ME IN HALF. I didn’t want to be overdramatic about a sore spot. I had even had my PT work on that area a few times, just to make sure it wasn’t a knotted muscle. Now my stomach felt knotted as I recalled the fact that bone tenderness could be a symptom of Leukemia.

After Chris and I were done talking I called my Neurosurgeon in Chicago just to loop them in. They said to go ahead and be seen in oncology and keep them updated because these symptoms are definitely abnormal. If they do discover some sort of bone marrow infection, it could infect the hardware in my spine which would be devastating.

Then I called the oncology department and set up my appointment. It’s July 22nd at 3:15 pm and I covet your prayers for both the appointment and for the waiting time until then. We are not new at the waiting game. I learned so much in our journey with diagnosing my Chiari, but it’s still not easy to think about having to go through another health situation that requires so much patience. Again, because of the complexity of my case, everything is difficult to diagnose. For each new symptom, there could be at least two possible causes. This can lead to major mind games going on in my head. There are moments where I feel almost certain that when we walk into my appointment on the 22nd that he will say, “There is absolutely nothing to be concerned about”. Then moments later, I feel pretty confident that he will want to look into this more; do a more extensive blood test, bone marrow biopsy, or CT scan of the tender area.

But the one thing that Chris and I DO know for certain is that God is still completely in control. This is not shaking him one bit. He will continue to use this for his glory and kingdom work. We are thankful that I have doctors that want to be thorough. And as my friend Erin said, God has only asked me to walk the road of waiting right now. Nothing more.

So in an earnest effort to do that and only that, I write about this not to compound the worry and “stir the pot”, but to ask you to pray. Specifically pray for mental strength to continually bring my anxiety and worry to God with Thanksgiving for all he has already done in my life and all that he will continue to do. Please pray that answers will be clear and that God will provide the physical strength to tackle whatever is next… whether it’s cancer or just having to live with a overactive autonomic nervous system.

“Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done” -Philippians 4:6 out of The New Living Translation Bible

Much love,

Adri


Reflections from the Life of a Bag Lady

“A woman is like a tea bag – you can’t tell how strong she is until you put her in hot water.” -Eleanor Roosevelt

Recently I’ve had flashbacks to a memory that is more than 15 years old. I remember walking down the long carpeted corridor of my high school. I was in Junior high and my constipation had reached a concerning and medically urgent state. I remember that my doctor had presented the possibility of an ostomy bag if things didn’t improve quickly. Thankfully, the situation did not come to that, but as I leaned heavily against the front of my cold metal locker, I remember thinking that living with a bag permanently attached to me sounded like the most horrific solution possible.

It’s funny how time changes things. How becoming a wife and a mom made me aware of the toll that my nerve-related constipation issues were having on my personal relationships and overall quality of life. How the mental exhaustion of “psyching” myself up for my clean out nights could lead to overwhelming depression. How twenty years of suffering dehydration, debilitating cramping, vomiting, weakness, (and more) on a weekly basis, could transform a once horrific solution into a hopeful one.

This month, I will have been living with my ileostomy bag for six months. Recently I have had several people ask me how it is going and if I’m glad that I chose to have it placed. I’m finally ready to write about that and share much of what has happened to my body and heart in these past six months.

First, the answer to the above question, “Am I glad I chose to have the ileostomy bag put in?” is an overwhelming “YES!”. It’s been a process to be able to say that with as much confidence as I do, and my health is still far from perfect, but here are some of the highlights of being a “bag lady”;

*Improvement in my overall quality of life* I’ve gotten my Sundays back* We can spend time as a family instead of me spending 6-8 hours on the toilet* I no longer have to plan my week around which days I will be sick and exhausted* I can read to Promise at bedtime every night* I can eat healthy fibrous foods without worrying about vomiting them back up* I can follow-through with my commitments more consistently* I have more predictable energy* I rarely have mornings where I physically can’t get out of bed* The weak and “heavy” feeling in my arms has essentially disappeared* While I still have my bad days, overall my Chiari symptoms have improved (which was the theory behind doing this! This is such an answer to prayer)*

While those are the two highlights of having my ileostomy (so far), by no means has this been an easy transition for me. As I’ve been thinking and praying through what I’d like to accomplish through this blog post, one thing really sits at the forefront of my mind; I want this to be a post that people who are facing the possibility of getting an ostomy can have as a helpful resource. I want to provide the information that I wish I had known in the first eight weeks of having mine.

Two things have become apparent to me since openly talking about my ileostomy. First, many people either have or have had an ostomy (or know someone with an ostomy) and second, people really don’t understand the mechanics of how an ostomy works.

I’ve never been one to shy away from sharing the reality of how messy living with a disability can be. I’ve always posted photos of myself post-op, pre-op, etc. without much hesitation or reserve. This entry, however, actually caused me to pause and ask my most squeamish friends (and family) and also my most blunt friends what they thought of me posting photos of my ileostomy. I was assured on all ends that it wasn’t too disgusting and that it is different than just posting a picture of… well… my butt hole. I mean THINK about it for a second. This is now where I poop. So… you can see where the “appropriate” line started to get a little fuzzy in my mind

So, if you have a 3ish year old child hanging over your shoulder as you read this, you may want to come back to this part of this entry later (unless you want A LOT of questions). For everyone else, I hope this photo collage and it’s corresponding explanations help you understand how an ostomy works. (P.S. one very observant friend (who shall remain nameless) asked me if my stoma moves locations? The answer: umm… no. Some pictures were taken in a mirror:))

this bag life

1. This is Stella, my stoma. A stoma is an “artificial opening made into a hollow organ”. The first picture shows my stoma fresh out of the shower, all clean, no bag, and thankfully nothing coming out of it. Since the small intestine functions involuntarily, it can be a little tricky to get a bag back on before waste starts coming out again. Especially when you’re first learning to put a bag on. Oh and yes, we named mine. Just be glad we went with Stella. Promise’s first suggestion was Roseblood (*cringe*). She’s… umm… creative? I figured it was appropriate to give my stoma a name because A.) I feel like it could someday evolve into a witty Children’s book title… “The Story of Stella the Stoma” B.) It made the whole process a little more fun for Promise and C.) Since “she” is made up of my intestinal wall, she moves involuntarily at all times. It’s kind of like having a small sea urchin living on my stomach. Fun, right?! Stella wasn’t always as tiny as she is in the picture. When I woke up from surgery she was about 3x her current size (which was a little shocking). Stomas shrink in size over the course of the 8 week healing process. Now she’s about 1″ in diameter. The intestinal wall does not have feeling, so it doesn’t hurt if I accidentally bump up against something, etc. This is really good because the majority of my time standing is spent leaning my core against furniture, due to my weak legs and balance. Stella’s kind of slimy all the time. If you flip your bottom lip down… that’s pretty much what a stoma feels like. She was created by making a small incision into my belly button (which still hurts a little every now and then) and another incision at the stoma site. The end of my small intestine was then disconnected from my large intestine (also known as my colon…. did you know they are the SAME thing? I DIDN’T until this surgery) and brought through the opening. Then it is flipped back (think like you’re rolling up a hem of a sleeve cuff) and stitched to my stomach. The technical name for what I had is an End Loop Ileostomy. This is different from a colostomy. A colostomy is placed in the large intestine (very common for colon cancer) and a urostomy is placed in the bladder. Another major difference between an ileostomy and a colostomy is how everything comes out. Since my body now gets rid of everything directly from my small intestine, it hasn’t yet had a chance to go through my large intestine (where the water would be taken out) so it’s still in a liquid form when it goes into my bag. Dependent on what I eat, it can range from very watery to a pudding substance.

2. Alright, moving right along (no pun intended). In this second picture, you’ll see the first step in applying the bag. I’ve placed something called an Eakin Seal around my stoma. It’s packaged in a donut shape and is very moldable (kind of like sticky dough).

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I stretch the middle hole of the Eakin Seal to be big enough to fit around my stoma but not too big, or else skin on my stomach will be exposed. It’s important to have a tight seal around the stoma because as the waste processes through the small intestine, there are still active digestive enzymes in it. If these enzymes get onto my skin and sit there, they can actually eat away my flesh on my stomach. I had this issue the week before Christmas (so about 3 weeks after my surgery). It was horrible. It burns and stings and makes it really hard to keep a bag on because it’s like trying to put a sticker on wet flesh. If this DOES happen, you have to do something called cresting. Cresting is where you try to create a fake layer of skin to stick the bag on by sprinkling a powder on the open flesh, then spraying a medicinal spray adhesive onto that, then another layer of powder, etc. in that order until a good barrier is built up. However, it’s so important not to get the powder on the other parts of your skin, or then the bag won’t stick to that part. This gets tricky when the open flesh wound is about the size of a pea. Then, to make matters worse, we discovered that I am allergic to the spray adhesives. If you encounter this, you can order an ostomy belt from a medical supplier and wear the belt extremely tight around your waist to hold your bag on. However (again) because of all of my lower back surgeries, wearing a tight belt like this could be dangerous to my nerves and spinal fluid flow. Let me pause and say that at this point in my recovery I was OVERWHELMED. (I will be doing a follow up blog, after this blog, simply on the HOW and WHAT to order when it comes to supplies. It is simply too much to fit into this blog. That being said, if you are reading this and do have an ostomy that seems overwhelming, DON’T GIVE UP. If I could sort through all of these complications, you can too, and it will be worth it!)

3a. Ok, this is the giant sticker step. I use a 2 piece bagging system, so this part is called the wafer. I prefer to call it a giant sticker. I use the Convatec moldable wafer. (again, a supply blog will be coming because this is just ONE of the MANY options out there). The center of the wafer (where the hole is) is made of a moldable sticky substance. I roll the edges of the inner hole back until the hole is about 1″ in diameter.

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Then I remove the plastic from the sticky side and stick it right on top of the Eakin seal, making sure my stoma is centered in the hole. I then rub around the edges because the warmth of my body and fingers helps it mold and stick to my stomach. After doing that, I remove the outer edges of paper and stick the rest of the wafer onto my skin, making sure there are no wrinkles or bubbles. I’ve found it helps to place it as a diamond instead of a square because then the adhesive doesn’t cover my belly button (which can be uncomfortable and tug on my incision).

3b. I wanted to take a photo from this angle so you’re able to see how far my stoma extends out from my stomach. It’s about an inch. Many people have asked me if it can get infected since my internal organs are just “hanging out” outside my body all the time. The answer is no. The skin around it can, but God’s made our bodies so incredible that the intestinal wall is used to handling some pretty hardcore bacteria.

4a. & b. This is the same step, just from two different angles. This is the last step in the 2 part bagging system. I like to call it “snapping the tupperware” because that’s really what it feels like. The wafer has a plastic ring that snaps into a concave plastic ring that is on the bag. I literally have to hear it snap together to know it’s on. Some people prefer to snap it together before sticking the wafer onto their stomach, but with the solid bag, I find it’s hard to know if I’m getting it centered over my stoma. If you’re using a transparent bag (which you should for the first 6-8 weeks post op) then definitely snap it prior to sticking the wafer on. As you can probably imagine, it kind of hurts pressing down around the edges of this ring to get it snapped securely. Once the bag is snapped on, you take the opposite end of the bag (called the tail) and roll it up and Velcro it closed.

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5. And Voila! My bag is on and ready to go. I’ll keep this bag on for 3-4 days and then do this whole process over again. To empty my bag (which is different than changing my bag) I un-velcro the tale end, while sitting on the toilet, and then it all just empties into the toilet. I have a little squirt bottle that I rinse the tail off with and then wipe it clean with toilet paper, roll it back up, and re-Velcro it. I don’t even have to pull my pants down if I don’t want to!:) This takes about 2 min compared to the 6-8 HOURS I would spend sitting on the toilet after over-dosing on laxatives. Plus I’m not throwing up, never feel bloated, not experiencing cramping, and I’m not blacking out. Yes, I have an itchy and sometimes annoying giant sticker on me and yes, there are still things that are hard about it, but overall it’s definitely been the right choice. I feel healthier, too, and I KNOW it’s healthier for my body.

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It’s been a learning curve to figure out the new digestion and absorption process that my body is now going through. I have had to switch from extended release medications (that are supposed to sit in your colon) to immediate release medications. I have a pretty intense electric juicer so Promise, Chris, and I juice raw fruits and veggies at least once a day. My body is able to absorb the nutrients much quicker this way, plus there is no risk of intestinal blockage happening. I also drink a lot more water, now that my colon is never given the chance to absorb it. (*Quick side note. If you ever juice a purple beet, don’t freak out when you empty your bag and it’s fuscia pink! And I don’t suggest juicing beets before going on an airpline…not that I know from experience or anything…*)

Swimming has also been a little bit of a curveball. Thankfully, I live in WI and don’t really have to worry about the temperature going over 70 degrees anytime between September – June (blah). And for those rare times that I do find myself in a pool, I’ll wear a one piece or a cute high wasted 50’s vibe two piece that showed up in my mailbox one day (thank goodness for friends who have listened to my insecurities, post surgery, and decided to just order and ship me this cute suit:)).

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I don’t feel like I’ve had to change my clothing too much, which is good because I generally like my clothes but is unfortunate because I also like shopping.

Probably one of the most annoying things about the bag is when it fills up with gas. (yes, you could say that I now fart out of my stomach… which is a little weird). When too much gas gets trapped in the bag, it gets puffy like a balloon. In that case, I just have to move to an area with good ventilation or the bathroom to “release my gas”. If Chris is ever being too annoying, I now use it as a threat against him (“Don’t make me release my gas by you!”). Promise will occasionally refer to my bag as Baymax, the puffy marshmallow robot from the Disney movie “Big Hero Six”. There is a scene in the movie where Baymax is too puffy to fit through a tiny window so he says in a robotic voice, “please wait while I deflate some air”. Promise has picked up on this and will occasionally leave me notes on the toilet that say, “You are like Baymax, Mommy. Please wait while I deflate my bag”. Smarty pants.

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It gets especially puffy at night while I’m sleeping, so my sleep has become a little more restless. Occasionally, I won’t achieve a tight seal on my bag and it will leak. This has happened while I’m driving, in a faculty meeting at the University where I teach, chalk drawing with Promise on the sidewalk, and even in the airport security line (again… back to the beets). During those first 8 weeks of my recovery this was so frustrating and discouraging. Now it doesn’t happen as often, but still will on occasion, so in addition to carrying my catheters around with me, I now also carry additional ostomy supplies. This is why I have such large purses.

One thing I wish that I would’ve known to do differently is take more time off from work for the recovery. I teach Fashion Illustration and Portfolio at a local Milwaukee University and I only gave myself one weekend between the Thursday morning that I had my surgery and then the next Tuesday when my class met. I should have allowed myself at least 6 weeks off because it’s such a huge life change. I also had home nurses who visited me for the first week home from the hospital, so it’s important to be resting and learning how to take care of your stoma.

This surgery was just as much (if not more) a mental battle as it was a physical battle. Immediately after surgery I would have people say to me “but aren’t you SO thankful you don’t have to take senekot anymore?!” in response to my frustrations with the new appearance and function of my body. This was really hard and discouraging because of course I was thankful to not be going through that anymore, but I was still working through the grief process of having my body once again, physically altered. Neither situation is ideal. It was a matter of “picking the lesser evil” and coming to terms with the harsh reality that “normal” will never be in the game plan for me.

If you know someone who has or is currently going through a change that affects their physical function or appearance (not by choice), give them time to grieve, process, and mourn the loss of the body they had gotten used to. It’s not that they’re not thankful that this might improve their quality of life, it’s just that they might be sad for a while (and periodically forever) that their function might never be fully restored. I am a very “half glass full” type of personality, but this was really hard for me to process and still is on some days. And I’ve learned to just tell myself that that’s OK.

Again, this body is not my final home, Praise God!

More to come in a later post…

Revelation 21: 1-5

“Then I saw “a new heaven and a new earth,” for the first heaven and the first earth had passed away, and there was no longer any sea. I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away. He who was seated on the throne said, “I am making everything new!” Then he said, “Write this down, for these words are trustworthy and true”

-Adri

 


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