Category

Back at the Hospital

My encounters with various ospitals and the particular ailment that landed me there.

Ileoscopy

As an IBD person I go in for check ups with my gastroenterologist every 6 months. Part of that includes a periodic inside peek at my digestive tract to make sure everything is going well. Originally Gastro and I were hoping for a capsule endoscopy (pillcam) which I have used in the past with success. When insurance denied the request we turned to ileoscopy to meet our goals.

Ileoscopy is a procedure where a thin tube called an endoscope enters through the stoma to view the bowel. Smaller than the diameter of most adult fingers, the endoscope is equipped with light, a camera, video camera, the ability to add air and water and tools to take a sample, if needed.

Thanks to the fact that I’m an ileostomate, scope prep was pretty easy and is the same I would have done for the pillcam. No food the day before, just clear liquid until midnight and nothing until after the scope.

Procedure day I got there early. If someone cancels, sliding into the open place is a perk I don’t want to miss out on.

Sedation – Now this is where my experience may differ from others. I prefer to be scoped unsedated. I like being able to participate in the scoping experience by shifting or moving if needed to get the best view possible. I like the ability to ask questions and get answers in real time from the number one expert in the room. Because I am involved and aware I understand the thought process of samples taken as my gastro is really good at explaining as we go, and we both look forward to follow up from the lab. For me, unsedated is worth any discomfort experienced.
*I have had sedated scopes. I simply prefer not to if at all possible.*

Because I’ve been having scopes and cams for ages now, I figured I’d go over a few pros and cons that might be helpful to know so you can plan for a successful time.

Pro Pillcam It’s really stinking cool. Requires no sedation. Depending on the type used it takes two to four images per second as it travels. All that information is streamed to your gastro office where they can review the pictures and get a result back to you as soon as the following day. (Depending on availability in your gastro office) The least invasive way to have a look at your insides.

Con Pillcam Go in early to swallow pill cam. You then leave to walk around with a device strapped to your stomach looking a little too much like a suspicious character for decent people. (The nurse will gently remind you to stay away from libraries and courthouses to avoid ending up on the evening news.) Follow eating and drinking directions throughout the day as you wait on motility to work its magic. Once the pillcam is out you then drive all the way back to the clinic to turn the crime scene esque equipment back in. It’s an all day waiting game. If you’re driving a distance to get to your GI, this can be a huge detractor. (One of the reasons why I really dislike it.) It exhausts an entire day. Things I do to help myself out: Walk around. Exhaustively. Get those bowels moving to pass the pill camera along as rapidly as possible. In my experience, pillcam day is not for taking in a movie, it’s a day for speed walking.

*You’ll want to discuss with your doc any possibility of narrowing or obstruction that could make passing the pill difficult.*

Pro Scope If you recover quickly from sedation, you could leave with an understanding of how things went. If you are a non sedation person, you have on the spot knowledge and can drive yourself to the next task of your day without delay. In and out then on your way. In addition, a scope allows you to take samples and manipulate tissue at the time of viewing. A bonus if you’re like me and don’t want to make a separate appointment for scoping on another day for results you want right away. I’m eager like that.

Con Scope
If you prefer sedation:
You will need to arrange for a driver to wait for you and take you home.
Depending on how quickly you recover, you may need someone to stay with you for a bit after going home.
Wait for discussion on findings with GI until follow up appointment or phone call meeting.
Gas. Air is used to make it easier to see. Once you’re done that gas makes its way out. This can be uncomfortable for some.

If you prefer non sedation:
Squeamishness about your body functions, bowels and the process it takes to look at them is not helpful for success. You must be okay with the idea and participate in the process of someone sticking a tube in your bum or stoma and looking around.
Gas. See above.

Commonalities
Bowel prep required. Ileostomates generally have a bit easier time than those with more parts. Follow the prep your doc prescribes, no food and lots of fluids until it’s time for nothing orally and you’re hopefully clear and ready to go. No cheating. Your doc can see if there’s residue and you’ll have to re test.

At the end of the day the scope went well. When you think about it, it really wasn’t a big deal at all. I am grateful to have a doctor on my team that shares the mindset of prevention first. Because Crohn’s Disease is a shifty little devil, you can have active inflammation even when you’re otherwise feeling fine. We approach Crohn’s Disease with the mindset of stamping out a campfire versus trying to save a forest engulfed in flames; prevention over recovery. A very important distinction that uses tools like regular check ups, pill cams, scopes and lab work to endeavor to keep the IBD flame extinguished and me feeling as healthy as possible.

I made a little video to give you an idea of how it went. Watch it if you like.

 

Gallbladder Surgery

The last couple of days I’ve been busy with surgery pre prep. This includes doing things like packing my hospital bag (Packing Video)

Prepping a week of outfits for my children.

Clothes for the week for the kiddos.
Clothes for the week for my kiddos. The littles wake up and put the clothes on their sleepy little bodies. Less morning stress for everyone = Win!

Thinking ahead about little lunches to pack.

Fruit cups to make lunches and snacks for the week a snap.
Fruit cups to make lunches and snacks for the week a snap.

And in the past I have even done this.

Food to eat while I'm away?  Check!
Food to eat while I’m away? Check!

And tidying my bathroom and closet/dresser. (Which happens to be nervous cleaning with the benefit of coming home to a clutter free, stress free environment.) And just making sure everything is set to go smoothly while I am away for a couple days.  Aka paying just arrived bills, make sure my volunteer time at the school is covered, make sure drop off and pick up times are written down for my hubby, practice speech with the little guy so it’s easier for when he practices with his Daddy, etc etc.
You get the drift.

The surgery that I am having is a gallbladder removal. My gallbladder has been a quiet offender for the last nine years.  It was hiding as mysterious pain that I passed off as overexerting myself or being a weekend warrior and unexplained increased liver levels resulting in unfavorably high numbers that over time magically resolved.  What finally helped us put it together was this last December I passed a gallstone which landed me in the ER. Yow, that was exciting!

Gallstone ER visit.
Gallstone ER visit.

So the deal with gallbladders is they help aid digestion by storing bile created by the liver, then releasing that bile, aka gall, into the digestive tract which helps break down and emulsify fats to help digest your food. Yay!

However, when your gallbladder gets cranky and inflamed or maybe tossing stones, is when things start going sideways. Stones can back up into the liver causing liver issues, which is something I am dealing with. And sometimes stones can back up into the pancreas and cause issues there as well. Also, as in my case, once stones start moving through, a bunch get together and decide to work their way out which is painful as can be. So that’s why I’m going in.

Much of the time gallbladders can be removed laparoscopically. Which sounds terrific. There’s less down time and a smaller incision. Very good things. But, if you’re like me, and you’ve had a couple too many abdominal surgeries, there is a higher opportunity for scar tissue which makes the laparoscoping (<—-Yes, I made that word up) harder than it has to be. In essence, it makes the surgeons job tricky in that scar tissue creates an obscured environment for her/him to see and maneuver to do the job.

So I’m having a standard incision below the ribs right above the gallbladder. This will make a straight shot in for surgeon to clearly see the offending area and do his/her job.

Laparoscopic versus open procedure.
Laparoscopic versus open procedure.  Photo credit: Surgeryinfo.org

This plan of action is good for a couple of reasons.

1) Scar tissue is a beast and I am Fantastic at growing scar tissue. I’ve even had surgery in the past to remove scar tissue. So I’m pretty sure there’s a bunch in there. I don’t want my surgeon to go in laparoscopically and then have to turn around and require standard entry. *Zero hitches in the plan!*

2) If the ducts that lead to the liver and pancreas need to be flushed, Voila!, there’s plenty of room to do that.

3) Another scar to rock on the beach! No, not really. But yes, really. For the damage this little gallbladder time bomb is turning out to be, removing it will be worth the battle scar. And let’s be real. I play organ favorites. I just like my liver and pancreas WAY more than a sputtering, malfunctioning gallbladder. So there!

4) The bile produced by the liver to aid in digestion will still happen. Instead of going through the gallbladder, it will empty into the small bowel to begin its digestive aiding job there. (Whew! Thank goodness I still have that part.) If I had a colon still, I may experience looser stools. As an Ileostomate, this is already the case, so less of an issue for me.  Score for being an Ileostomate!

Things I am going to keep in mind moving forward is diet. I am already an infrequent fatty food enjoyer. That’s one point for me. Plus we officially live 1000 miles away from my very favorite corn dog stand located in Otis Oregon. So in that regard I’m safe. But it’s those festival, Oktoberfest, onion ring, occasional joyful moments that I will have to be more mindful of. *Gasp! * Don’t forget ~ SUPERBOWL!! Well, it must be time to perfect those boneless hot wings. <—-See? I love food. And I will continue to do so thoughtfully.

In the end I am grateful that I am not having a bowel surgery. For ONCE I’m not going in for IBD. I am grateful that being an Ostomate is actually sort of helpful in this case. I am grateful that the surgeon doing my procedure is also top notch in Ostomates of all sorts. (Which is a BIG deal to me.) I look forward to improved liver function and no more painful stones passing. I am glad to be having this done at a time when the rest of my world is relatively calm. I am super grateful that my husband is able to take time away from work to care for our children.

Most of all I look forward to getting back to regular life. I have plans in action that I want to see through and a life that needs living with me at my best.

Ostomy Number One

It’s no secret. I love my Ostomy. I really, really do. But it wasn’t all fantastic exuberance. I started out unsure, scared and entirely uneducated. It was rocky y’all.

In my life I have had three Ostomies. Today I will share with you the origins of Ostomy number one.

I was seventeen. I had been sick for years. The first day I ever heard about an Ostomy or that you can even live with part of your bowel removed was when I was in the hospital during a hard flare that we were unable to control. Not a new thing at all for me. I had just come from a semi sedated colonoscopy and still felt bloated and painful from the procedure. I knew it was bad when the screen was turned away and the doctor got very quiet, annunciated his words and became very serious. He was face to face with the living monster that is IBD, trying to remain professional. As an adult who has been on the business end of a doctor clicking into ‘work mode’ I understand he was taking samples, noting disease symptoms and more. As a teenager lying on the table, I felt broken and wrong. Vulnerable. As if I was what he was angry about, not the disease actively chewing up the insides of a young girl. It was painful, scary and very isolating.

A few hours later the doctor came into my private room located at the end of the hall. My grandparents followed behind, grim looks on their faces, they found a place against the wall. Doc came to stand by the side of my bed and said something along the lines of. ‘You need surgery to remove your colon. You are not responding to treatments. You are going to have an Ostomy’. I started to cry. How do you live without your intestines? Then he got mad, raised his voice and scolded me to Stop Crying! ‘You are going to have this surgery and you are going to be Just Fine! People live without part of their bowel all the time. And You are going to be one of them.’
Head swirling, I half heard words about a surgeon he had contacted to do the procedure and he was off.

And that was it.

I had zero information. My grandparents could offer nothing but sorrowful glances in the now very cold room. I felt light headed as the blood drained from my face. I tried to wrap my mind around the idea of being purposefully hollowed out and surviving that. What kind of life would that be? My grandfather had been a medic during the war and through all my bleeding, painful episodes and late night fevers, he was a rock. Not anymore. With a grim set to his mouth he repeatedly cleared his throat, swallowing hard. Damn! He’s trying not to cry. My grandmother gave up on even trying to keep it together as her flowered hanky shakily dabbed already puffy, tear streaked eyes. Grandpa snapped into action, grabbed grandma by the shoulders and firmly escorted her out of the room. Just as he passed the door he looked back, eyes tracing my form from feet up, then connected with mine. He paused and called me my special name only my grandfather is allowed to use, and left with my grandma before him. I heard feet echoing down the hall and my grandmas full on crying.

I was left alone.

Well, Shit!

Looking back, that time in my life had been one very long flare with moments of ‘all hands on deck, she may not make it through this one’. So many hospital stays, medications, blood transfusions, z-tracking iron into my butt, IV hydrations, banana bags, Gatorade and pureed food. I was trying my best but barely squeaking by. I was overly familiar with illness and pain. It was part of my identity to the point where being defeated by IBD was a very real possibility that I had begun to be okay with. I held hands with death as lightly as possible. I didn’t want for it to sweep me away. But in an odd way death was more of a possibility at that time than growing up was. Most of me was fighting, but a small part tickled against the back of my brain that the fight I was giving was really not working that well and one day my battle may be over whether I wanted another go at treatments or not.

I even had ‘the talk’ with my grandparents where my funeral was planned out. I numbly worked out my wishes about end of life care, resuscitation, organ donor status, even a somewhat healthy picture was chosen for my obituary.

This was life at seventeen for me.

IBD was artful in its scraping away at my youth. It savored my childhood and was desperate to take more.

What I dealt with health-wise made high school stress, bullying and all the other things teens deal with feel both inconsequential and insurmountably difficult. There was no easy place in my life back then.

But then came a new way to fight I had never heard of.

Ostomy

I was admitted a day before the procedure into a private room in the big city teaching hospital an hour from where we lived. In perfect timing with a desperate need of a break from drinking, then vomiting the Go Lightly, my surgeon came to visit, followed by a gaggle of students in white coats. They listened intently as my surgeon and I talked. My surgeon is the nicest, most intelligent woman I have ever met. She ignored those students and focused on making sure I understood the procedure I was about to undergo. She sat on the bed beside me, pen in hand, drawing on the sheet as she spoke. The images she created on the stiff white cotton came to life as pen imitated needle and finger became scalpel. My curiosity turned to hope under the light of her knowledge. She spoke quietly but excitedly as she wove the words that created my new life of Stoma, Ostomy and J-Pouch. All questions answered and mind filled with possibility, she and her team left.

What was blank unknowing filled with guesses and assumptions became confidence. By the time she was done visiting I Believed I was going to be better. I looked forward to the procedure. I felt like a member of the team. This thing wasn’t being ‘done to me’. I was an eager participant.

From then on Dr. D was my Dr. Frankenstein and I would be her lovely little monster. Re created from parts that were otherwise broken into something marvelous and fantastic. I was made new again.

Early the next morning nurses carefully prepped me. I was first in line for the surgical suite. They made that sound fancy. As I stood with gown pulled to the side we designated a stoma site. The other nurse, gathering the belongings I had placed in a clear hospital bag turned to compliment the choice. ‘Okay’ I thought to myself ‘This is working out already. I can do this.’

In a chilled room, laying on the gurney amongst shelves with positioning blocks, supplies and rolling carts covered with fabric, I was given my IV and covered with another blanket. Curious, I asked what all those things were for. A nurse counting white gauze squares set her stack aside, answered, then gestured to a set of double doors indicating the operating room. ‘Ah, that’s where the magic happens.’ After a while a gentleman held up a syringe and asked what I wanted to dream about. ‘All the things I’m going to do when I’m healthy again.’ What will you do first? ‘Go to the beach.’ That sounds great. I watched as he pressed the liquid into my IV. The head of my gurney was lowered and the countdown began. 10, 9, 8…..7?…..

And that’s when my life began again. I woke up cozy and warm, covered in heated blankets. It felt like I was only asleep for a few minutes and magically placed in another room where a nurse brought me to reality by forcefully ordering me to Breathe Deeper! Your oxygen is too low. You need to try harder and show me you’re with me. Getting closer, she peers in my eyes. I had not realized she had been speaking to me before now. Gosh she’s grumpy. Here I am all cozy, staying out of trouble and she’s all worked up. Breathing. Pfft. Oh! Rubbing me hard on my upper arm, her words finally click in. Ah, I get it. In through the nose, out through the mouth so she knows I’m trying. She greets me. Realizing I can understand and respond to her words she asks if I know where I am.

I am moved to a room and the learning curve began. I saw my Ostomy for the first time. Walked that evening. Learned to empty my bag. Switched from liquid to soft foods. Learned to change my Ostomy. Walked more. Changed my Ostomy all by myself. Felt good enough to wear sweat pants and began to learn how to wear an Ostomy under clothes.

During that time I transitioned into myself. Life really did get better.

No more pureed food. Woo Hoo! Real food tasted so good it was downright colorful washes of happy, tingly euphoria to eat again. I went to the beach, water park and had more energy at school. I helped my friend buck hay (much to the chagrin of my surgeon) and even went to a couple school dances.

And that’s where my story leaves off.
That was my first Ostomy.

Bracelets

bracelets

Photo Haiku

Endurance, strength, life
Trial and struggle in this bowl
Shaping who I am

Cleaning out my office I came across a couple stashes of hospital bracelets.  Forty five bracelets make up a timeline of endurance. Their own memorial to lessons learned. I have earned these over the past twenty three years. This certainly isn’t all of them but it was most definitely a walk down memory lane to look at each bracelet and remember back to those experiences.

Universal Truth about the HIPAA Law

 

Regardless of relationship status, each group must establish –prior to need- a HIPAA back up person.
HIPAA Law is great.  It serves the purpose of protecting both the patient and the medical establishment from fraud, misrepresentation, treating the wrong patient, and privacy control. But sometimes it is a pain in the butt.  <Pun intended>.
HIPAAs’ all or nothing approach can feel much like talking to a brick wall.  If the magic forms have not been signed, or a very specific set of questions answered correctly, you are shut out.  It does not matter if you are married, domestic partnership, single, or anywhere in between.  No level of relationship grants any kind of ability to care for each others needs unless it is expressed in a very legal and specific way.  In order to do this, you must contact the places you may accrue medical debt, and ask to have your HIPAA opened up to whomever you trust to pay your medical bills in the event that you are unable to.  I think of this as having a ‘back up’.

This matters to everyone.  Anyone at any time could find themselves in a situation where they are unable, or it is just easier for someone else (like your spouse) to handle bill paying for you.
 
An example:  A couple of weeks ago my husband went in for a routine checkup.  Nothing big, just establishing care in a new area and getting his flu shot.  When the bill came, I attempted to pay it.  The medical facility would not acknowledge any information in regards to my husband.  I had his bill in front of me with the account number, amount due, and date of service.  I even had his date of birth and social security number ready to go, anticipating what questions would be asked to verify that I was the correct person on the phone.  None of that mattered.  They would not let me pay his bill at all. Why?  He had not completed a HIPAA form.

I am his wife.  It is my job to pay the bills.  My husband works hard all day and often far into the evenings and weekends.  He should not have to stop and call, be on hold, and deal with insurance information and medical numbers if I, his wife, am able to.
I am THE Wife.  The Spouse.  I am the number one person who has my husbands’ back in all things.  However, in the eyes of medical law, no one has rights.  It does not matter if you are married, legal life partners, single, or even a sibling or parent of anyone eighteen and over.  If you have not established HIPAA rights with that other person, you are out of luck.  Everyone must establish their own back up person, and go out of their way to state that legally every place you possibly can.
In my opinion, if my dog called and wanted to pay our medical bill, the clinic should be super happy about that.  They should be thrilled about taking money and getting paid for service.  So many people cannot pay their bills, or are calling to arrange a payment plan.  When someone wants to pay a bill outright, helpfulness towards the customer should be the rule of the day.  ‘Hey medical company, take my money please and let’s all be happy’, Right?  NO.

 

In the end, my husband did have to get on the phone in the middle of his work day and deal with the medical company.  While annoyed, I fully understand.  I want that protection and double check to prevent against fraud. 
But it is more than bill paying.  It is the ability of another person that you trust to ask any medical question about you and get an answer.  In the event of a car crash, household accident, crazy medical mishap or emergency, you need to have established someone in your corner with the ability to ask and get answers in regards to your medical situation.  In the event that you are unable to answer for yourself, this person needs to know your views on life and your understanding about the preservation (or lack) of it.  

 

It is all about a person who loves you making informed medical choices on your behalf, versus a medical facility making the best choice that would keep them out of a law suit.  Those are often two very different outcomes.
 

How many people with chronic illness and IBD have gotten far too sick far too fast?  How many of us have found ourselves in this position or something similar?  Do you have a back up person ready to go?

Todays call to get bills taken care of turned into a reminder of what we as IBDers should think carefully about, and take action on to protect ourselves.  


Crohn’s Guilt ~Finances- The Deep End

 

Money, finances, the cost of living with Crohn’s, and how to balance it all is a tricky subject.  People in general don’t like talking about money.  As a culture we don’t openly discuss budgets or debt.  In some circles it is considered taboo and even rude to share honestly about our actual individual economic circumstances. 

As an adult with Crohn’s I will tell you that financial guilt is a large component of the entire picture.  As a wife and mother with Crohn’s, guilt weighs heavier because I see in a thousand tiny ways how my disease is robbing from my families’ bank account.

‘This is the part where I feel guilty and horrid for costing so much $$.  A self loathing of the part of me that has Crohn’s.  A knowledge that if I didn’t get sick so damned often we could go on vacations and have a better standard of living.  I am feeling pretty shitty and worthless right now.’

This is part of a real conversation I had with my husband as the bills from my latest hospital stay start to roll in.  The current one is for $23,271.30.  I still have the Urgent Care bill, Radiology, Lab, and the After Care bill on the way.  Thank goodness we have health insurance.  In the early days of our marriage we did not. 

As my dearest calmly and reasonably tries to calculate whether we spent over 7% of our annual income on medical expenses, yet again, to perhaps qualify for a possible tax break; I think back to similar conversations.  All versions on the same theme we have had for the past sixteen plus years.  I have lost count of the tens of thousands of dollars our little family has spent on Crohn’s Disease. 

We are a one income family.  I am a stay at home mom to two children, who are our priority.  When I am healthy we live comfortably.  We all know that budgeting is important.  But budgeting around the ambushing nature of Crohn’s sometimes feels impossible.  And that is where the guilt comes in.

During the hard times we have scrimped, ate less, worn sweaters to reduce the cost of using heat, and just gone without.  I have learned to make most everything we need, and became crafty by necessity.  Being thought of as frugal is a badge of honor.  My husband and I have skipped birthday, anniversary and holiday gifts to each other.  I cut my families hair and I have gone ‘all natural’ avoiding the salon for myself until on the brink of jungle fever.   ‘New clothing for Mom’ is not an ongoing line in our budget.  I replace items stained, shrunk or destroyed by motherhood.    

Sure, I didn’t pick to have Crohn’s.  None the less, I am the one who is always sick.  It is truthful to say our financial hardships are because of the Crohn’s that lives in me. 

Because of the immune suppressing Crohn’s medication, I am the one with the body that can’t fight off every cold and flu that comes down the pipe.  Yet another way my body continues to be a wrecking ball for our families’ finances.  One of its worst aspects is the unpredictability of it all.     

The stress of that knowledge weighs heavily on me.  I love my children.  I go the extra mile and use my crafty skills to ensure they are never without.  They are well cared for and participate in sports and play groups.  They are happy, social little people.  My husband and I have taught our children to appreciate the small things.  A picnic at the park, scooters in the back yard, walking at the zoo, trips to the beach, and gardening are all activities we enjoy as a family.  We are in permanent stay-cation mode.

I am resentful of my own body because our family spends its money on Crohn’s versus family adventure.  It is hard when our daughter comes home from school and asks why we have not been to Disney Land if her friends and class mates have.  It is impossible to put a vacation goal on the map for eighteen months from now and know we can afford it at the time. One night in the hospital or even an emergency room visit wipes that entire vacation budget away. With Crohn’s there is no such thing as ‘fun money’.  We spend our hard earned dough on just the basics and save the rest. 

When I am at the deep end of Crohn’s loathing, I feel bad for my husband.  When I am sick and bleeding money faster than he can make it, I don’t know how my sweet spouse can stay so calm.  During those times I feel helpless to make it better.  I wish I was strong enough to make Crohn’s disappear forever.  There are times when I privately cry with fiery anguish at my hatred for Crohn’s in that moment, and sorrow for its injustice towards my husband.  My wonderful man deserves a wife that is healthy all of the time.  He deserves to share his life with a woman who is not so acquainted with the inner workings of her own guts and hospital procedure.  Guilt whispers cruel intentions into my brain during woe filled times. I feel the need to be especially kind to make up for the hardship that Crohn’s lays on my family.

I am lucky enough have a husband that loves me through it all.  I am fortunate that he has never blamed me or fed my guilt.  My husband treats it like a goal to accomplish as a team.  He works longer hours and I find ways to work out the budget and arrange payment plans with the various medical facilities.  He wraps me up in his big ol’ man arms, lovingly calls it a ‘red month’, and assures me we will get through because that is what I need to hear.  And with scrimping, payment plans, and doing without, we do.  I just have huge guilt. 

So, there is my guilt.  I have shared it with you to expose yet another unspoken truth about IBD.  I don’t feel guilty all of the time nor do I let it consume me.  Never the less it is a very real part of my life.  It generally follows after I pay the bill for my very expensive medication, Ostomy supplies, family doctor, urgent care clinic, blood lab, gastro specialist or hospital bill.  It is a constant stream of money flowing out to pay the loan shark called Crohn’s.  I suppose if it were for college or music lessons, surfing lessons, or even a better working washer and dryer I wouldn’t feel so bad.  The mountain of financial guilt feels sharply infinite because we are spending our money to continually win against Crohn’s.  It feels like an uphill battle that we only chip away at to stay on the margins of healthiness.  I know I am worth it.  But I don’t like being worth it all the time or this much. 

Pre Surgery Gear Up

Food prep

With a surgery rapidly approaching I am beginning to feel the pressure.  Thanks to IBD, I’ve had lots of surgeries.  I feel a bit like an old salt in this arena.  I know what to expect from the hospital, surgery, and recovery.  But I still get nervous. 

For me anesthesia is the hardest.  I have had some bad run-ins with this other worldly drug induced trip that all surgery recipients travel through.  I need it so I can have the surgery, but I hate the doped up nauseous feeling.  The medication is metabolized through the lungs, so each breath out tastes like the anesthetic.  I usually end up nauseous and often vomit which is painful, stitch ripping news when you have sutures marching a crooked line up the middle of your abdomen.  With anesthesia I am mercy to the skill of someone I have never met to keep me breathing.  This fact brings me too close to my fear of mortality and losing my family.  In addition, every patient signs a ‘Side effect may include death’ form.  It makes me very uncomfortable.

I wonder if the other part of my anticipation is lack of control?  I feel like a team with my surgeon.  When it comes to the surgery itself I am very confident.  My surgeon is top in her field.  She has rebuilt me from scratch time and again.  In a way, she is Dr. Frankenstein and I am her lovely monster.  I am sure in her skills and am a personal fan of her work.  I have known her for twenty years.  This close partnership gives me a feeling of comfort.  I don’t have to worry about the surgery aspect because I have a pro on board.  I don’t have to control this piece. 

I do have control over my reaction to pain.  Pain is usually only a transitory issue.  All surgery is painful.  You are being cut open.  Parts are being removed and altered with knife, stitches and staples.  It is unrealistic to expect a pain free experience.  In addition, pain meds tend to make me grumpy, so I prefer to use only enough to take the edge off so I can keep my wits about me.  It is always my goal to straddle the fence between pain and doped up.  I do everything in my power to manage the discomfort so I can leave the hospital as soon as possible. 

Another thing I have control over is my family and my efforts to create a smooth path for them.  It is not their fault I have Crohn’s, surgeries, and time away from them.  The least I can do is be thoughtful of my family whose life is altered unfairly by my illness.

About one week out from the surgery date I begin the list making.  On the list are kid prep, husband prep, home prep, and food prep. 

Who will watch my kiddos for the day? What will they eat?  What can I do to make the transition easier for them?  How will I explain this current procedure to them in age appropriate ways?  How will I answer the tough questions like, ‘Why didn’t the last surgery work?’ 

Husband prep includes my awareness of how he doing with his stress level.  Is he comfortable with the plans I have for the children?  Will the care giver back out at the last minute so hubby ends up taking on the task of watching kids in a hospital while I am in surgery for hours?  If so, what can I do to make that smoother for him? 

Home and food prep are the easiest because it is less personal. I do like to know my family has healthy, familiar food to eat while I am away.  It makes me feel as though I am loving them from a distance. 

I also like to come home to a clean house.  If I am having a planned surgery, I clean like the Queen of England is coming for dinner.  It is hard for me to rest and recover if there are dishes to do and floors to vacuum.  I know it is crazy, but that’s just the way I am.

I have no control over Crohn’s or its varying complications.  But I can do my best to make it easier for my family.  In a way I suppose it keeps me busy and gives me something joyful to do so I am less nervous.
 
At night, in the dark when I am supposed to be sleeping I think about what my life would be like without Crohn’s.  It would be less stressful on my husband and children.  So I go about doing my best to accomplish that goal anyway.  And that, for sure, I have control over.

I am not controlling in an awful way,  I like to think of it as having a ‘Can Do Attitude!’

Hernia Hijacked

 

I have had my permanent ileostomy for about ten months now.  My surgery was ideal, my recovery time was speedy, my spirits high.  I was able to go back to life sooner than anyone expected, and have been relishing every bit since then.  I am active, happy and healthy.  Life could not be better.  I really love being a permanent ileostomate.

Recently I became very sick.  Sore throat turned into a sinus infection and bronchitis which included lots of coughing.  I ended up in the ER for a breathing treatment for my asthma and required lots of meds just to get back to normal. 

The hacking was particularly painful and frequent; invading my much needed sleep and interrupting my poor husband’s rest as well.  I am talking about the kind where your whole body curls over for leverage as you suck for breath and push for power.  In the past I have torn rib muscles from this sort of activity.  I remember the burning feeling of tearing muscles with each torturous eruption.

I was able to recognize the same rip and tear with this latest episode.  But it was in my abdomen, right next to my stoma.  I soon noticed a bulge and suspected a hernia.  Every time I cough, clear my throat, lift something up, bend forward, or do anything active, my bulge pokes out.  It is more than visual.  I can feel my bowel slide out and then back in.  *Insert diner scene from the movie Space Balls where the alien pops out of a gentleman’s abdomen.  ULK!*  The main concern is that my bowel may become strangulated. 

One further side effect is that the hernia has changed the shape of my stoma.  My once perfect little cherry life saver is now a frequently changing mini island.  Sometimes it is concave making great opportunity for stool to find its way under the wafer, or it is protrusive on the bottom and tucked in on the top looking a lot like a child pouting with his bottom lip stuck out. 

A visit to my GI surgeon confirmed a hernia and damaged stoma as we discovered the extent of the damage.  The understanding is when I went in for surgery ten months ago, my bowel was very swollen.  The opening to make the stoma had to be big enough to fit inflamed bowel.  However, now that the swelling has gone down, coughing opened up the muscle wall allowing normal size bowel to move out and in freely.  I will need surgery to fix the hernia and do a stoma revision. 

Who would guess that a cold would lead to this? 

Some moments I am grumpy about it.  Let’s face it, this stinks! 

But then I think of ways to be okay with it.  My surgery will be in the summer so I will not interrupt school for my daughter.  I heal better in the summer.  I already know what to expect from surgery. 

So I got hijacked by a hernia.  Hey!  Perhaps I’ll get some good pics 😀

Asthma ER 4th of July

On the way to the hospital not feeling that great.

 

I love the 4th of July.  It is one of my favorite holidays of the year.  This year I envisioned starting the day with strawberry shortcake for breakfast and ending in a BBQ for dinner with zucchini and chicken, potato salad, and corn on the cob.  I planned yard games and squirt guns, crafts and fun.  We were going to end the day with fireworks and smores, huddled together under a blanket enjoying the displays from the larger fireworks around us. 
It was going to be such a great day.

In truth I was sick.  I had been seriously sick for about two weeks at this point.  It started out as a sore throat and turned ugly.  This time it was my asthma.  I had not been breathing well for the last couple of days and struggled especially hard the night before.  I woke knowing I needed serious help.  Instead of strawberry shortcake for breakfast, we all hopped in the car and headed for the local ER. 

I have a love, hate relationship with asthma.  I love it because 98% of the time I take my asthma controlling meds and it is largely out of sight, out of mind.  There have been times when asthma has been such a non-issue that I stopped carrying my inhaler with me.  When I did have an asthma flare up, it has been very easily controlled and put back in its place.  Compared to many factors in my life; asthma was the easy thing. 

I hate asthma because it can be so overpowering and all encompassing.  When I can’t breathe well, nothing else matters.  I don’t play, eat, or enjoy life.  I just exist to breathe until I can get this monster asthma under control.  Asthma strangles and drowns from the inside; an invisible vise that squeezes life away with each attempt at breath.  This makes me angry, frustrated, helpless, and fires my fighting spirit.  In other words, I get pissy.

I had been coughing all night because my lungs were having spasms causing an inability to fully take in a whole breath.  In the morning I felt weak, my lips and fingers were tingling, and I was dizzy.  I was tired from lack of sleep and from the exertion of struggling for air.  This is NOT how I planned my holiday starting out.  I was arrogant or ignorant enough to believe that one simple breathing treatment would fix things and I could continue my celebrations without skipping a beat.  In truth, it would be another week before I was truly breathing better.  I was put on antibiotics, steroid pills and steroid inhalers, plus I had to use an at home nebulizer every day for a week just to get back to normal. 

This lung infection and subsequent breathing problems gave me plenty of time to think.  I was forced to slow down.  I had to curtail daily activities that I had just begun to take for granted.  I was so wrapped up and feeling very ultra spring fresh when it came to my life in so many ways.  I felt like a bright light was inside me shining out with joy and life.  I was luxuriating in my own reclaimed abilities.  I was so focused on IBD, Crohn’s and Ostomy culture that I was more than happy to ignore my asthma.  My forward momentum and personal effervescence for life ran off and forgot its quiet little friend.

When it came to asthma I had fooled myself.  Because it is generally so calm, it was easy to pass over, and for the most part forget about.  I felt like just taking my meds was enough.  How very absentmindedly convenient and self neglecting of me.  I startled myself when I realized that ASTHMA was not even listed on my medic alert bracelet.  I sat in the ER sucking in meds through a mask and actually had a face palm moment.  Of all the things on my medic alert bracelet; asthma is the one I could die instantly from, and it is sadly missing from the list. 

After my breathing treatment we all went home for a laid back 4th of July.  My husband and children thought that breakfast at the hospital was super fun and did not mind the detour.  We continued our day with planned activities of yard games and running through the sprinklers.  Later we enjoyed a bon fire and roasted marshmallows.  We huddled under a blanket to watch the fireworks together.  It was a great day. 

In the end I was so grateful for the lesson I had learned.  I had gotten so caught up in my life zestiness that it was easy to ignore the smaller issues waiting to be addressed. 

Now to get my medic alert bracelet updated!

Roasting marshmallows around the bonfire.
Watching the fireworks!