Post-op power shift and Open Wound

What is a panproctocolectomy?

It’s a Monday morning in April, 2014 and I’m finally home after spending Easter and both my mother’s and my birthday in the hospital.  I have convinced myself that being at home I can rest, work with my computer in my lap, take care of my body and heal.    The resident that discharged me gave instructions to soak the stitches in my bottom several times a day and call or come back in with fever or anything unusual.  The nurses loaded me up with those huge maternity pads for the drainage I continued to have.

My body betrayed me yet again.  Fluid poured from my ostomy and my bottom.  I couldn’t sit down anywhere on anything no matter how many pillows or cushions I tried, I could only lay on my side.  My heart rate stayed high.  Eating a few bites of anything just made me feel sick and made more fluid pour.   My belly was glued together everywhere and my bottom, oh, nothing compared to way it felt.  After having had two children, I thought I had an idea of what to expect but with all the fluid I had developed and the drain they had put in and sewn to my cheek, I had an enormous amount of swelling. 

By the time the weekend rolled around again, I was so weak I was getting up to creep to the bathroom and back to the couch and that’s all.   I had gone through well over a hundred pads soaking up fluid from my bottom.  I was so lightheaded.

Sunday night things got worse when I started bleeding heavily from my bottom.  I knew something was wrong and called the number for the surgeon.  After an hour, I still hadn’t received a callback and by now I soaked four of those big pads with blood.  It’s midnight; my husband is in bed having to get up very early for work the next morning.   I called again and this time the resident on duty called back immediately.  Sadly, he didn’t give me any good advice even though I made sure to tell him all the circumstances, how much fluid, blood, etc.  He insisted that it had been far too long since my surgery for anything to be wrong and I should just put some pressure on those stitches.  At the last minute he added that if I wanted to go in to a local urgent care, not come back to that hospital, and have someone look at it to make me feel better he wouldn’t discourage me.  He made me feel as if I was just freaking out and would only be going in for reassurance.  It was almost 1:00 am; I’d be getting my husband up and possibly keeping him from working yet again.   I put an ice pack on my bottom and tried to rest.

The next morning, Monday, as soon as my surgeon’s office was open I had a message waiting.  When I spoke to her PA, she said that kind of bleeding was significant and I most definitely needed to be seen.  What a relief that was!  Then to my dismay she said I had an appointment scheduled on Wednesday morning and I should be sure to keep it.  Between ice, very light pressure and pads, I’ve now gotten the blood to slow but I am still having all this fluid mixed with blood.  There is absolutely no way I can see what is going on but I can tell the area is swollen so grossly because nothing feels normal to me.  I don’t know what to do but try to manage until Wednesday morning and figure out how to get to the office.

My cousin goes to the appointment with me.  I’m near tears with pain by the time I get on the table and laying on my side again.   My surgeon takes a look and casually says, “Well, your stitches have come open, we’ll have to pack the wound.”   She motions for my cousin to take a look and asks if she can help me.  I see the horror on my cousins face as she starts shaking her head and saying, “UN-huh, no way, not me.”  I still have no idea and think my husband will be able to help me.  My surgeon is still casual.  She is pulling out some 4x4 squares and those long q-tip looking things and telling us that twice a day this wound needs to be packed with an open gauze square but it will heal.  I have a lot of swelling but it will go down, she says.  Everything will be okay, it just needs a little time.

I left the office with a two small boxes of 4x4 gauze squares, some of the long doctor swabs and a bag of gloves, none of it sterile, and an appointment to come back in a month.  When we left, my cousin told me just exactly what this wound looked like, how long, deep and wide it was and how much swelling I had.  It looked I had four cheeks instead of two.  We went to a medical supply store and tried to find something I could sit on for the ride home.  When my husband got home that afternoon, my cousin explained it all to him while we all remained a bit shocked.  He tried changing the packing that night, which ended up being a nightmare for us both.  I couldn’t lie on my belly, only my side, because of the ostomy and surgical pain.  

There was no way the two of us could manage this alone.  Neither of us knew what to do.  I understand wanting to make patients feel reassured, that nothing is wrong and not have them panic, but the resident, PA and surgeon all made me feel dismissed, not reassured in their effect to assure me everything was okay.  By making me feel dismissed, they took away the power I had to advocate for myself.  Has this happened to you?

One of my surgical wounds, not a long incision but I manage to bruise, blister and scab.

Barbie Butt Surgery

Thursday, April 17, 2014.   It’s surgery day, again.  I wasn’t apprehensive or worried.   This picture was taken in registration that morning.   The message on the ostomy bag says “Give me the Barbie butt, please.  Maybe even up the left side a little. J” You can’t see my sweatshirt well but it’s purple with a large pink smiley face and says “girls rule”.   The plan was for me to be in surgery before noon, in recovery awake with family within a couple hours and home by Monday to recover at home, working again.  Sunday was Easter.  I had already had a lengthy meeting with the surgeon who again recommended the proctectomy for me.   My colitis was so severe when first diagnosed that my GI did not recommend j-pouch surgery for me.  The surgeon agreed.  It has been two years and I’m still having pretty high output from my ileostomy which could make for a very grumpy pouch.  It’s been six months since I had open abdominal surgery for a complete hysterectomy and they saw few adhesions so this surgery and recovery should be very similar.  They won’t have to open my abdomen completely again.

Three-thirty and my family are still waiting.  The hour a half time it was supposed to take for surgery has come and gone.   Fours after they started, it’s finally over.  There were complications.  It took hours to even get through all the adhesions to the little piece of colon, rectum and anus.   I wake up in recovery with an abdominal drain, small glued holes everywhere, an ugly belly button, again and some huge stitches in my bottom.  I was expecting stitches, I’ve had two children.  I had no idea the incision site would be that big.

I don’t care about complications.  Immediately, I start asking if I can get up.  My plan is to get out of this place and get home.  It’s not to be.  I have to stay in bed a while.  Doctors kept popping in and telling me my labs are off, they have to get this back in balance, I need this or that, I have to eat.  I keep asking when I can go home.  Maybe tomorrow, they say.  One leans down by the bed and asks if I have ever had problems with my kidneys in that past.  That should have been a warning sign but I’m too focused on wanting to get out of there.   Nope, I say, and then ask the nurse if I can have a popsicle.  My labs don’t improve.  My heart rate is too high.  They want to do a CT scan of my abdomen and then maybe they will let me go home.  By now it’s Monday.  I’m still asking every time a doctor comes in the room, when I can go home.  Maybe by Wednesday, they say.  Finally, they arrange for the CT scan.   I still haven’t eaten, but have convinced myself that I will choke down a few bites and they will let me go home.

They bring me some soft food.  I try to fake it and eat a few bites.  My guts defy me.  The CT scan plainly shows a big pocket of fluid in my pelvis.  The nurses’ log clearly shows my output to be over 5 liters in 24 hours.  No matter what they hang on my IV pole, the labs still show something missing or off.  My heart rate is still over 140.  It’s Tuesday morning and the resident walks in the room.  I look at him and say, “so,” already knowing that I’m doomed but not wanting to admit it to myself.  I can see it in his face, he doesn’t want to admit they haven’t been able to slice into me, stitch me up and everything be perfect.  He looks pained and he just says, “you’re ostomy output has been over 5 liters.”     That’s the moment I accept I am once again the difficult patient, the hard case.  My mother is in the room.  He asks if I have eaten and when I try to say squeak out a yes, she jumps in and tells him the truth.  I took two bites and she’s not sure I swallowed the second one.  I ate a popsicle, well most of it.

The surgeon comes to see me later that day.  I’ve accepted that I just have to stay in the hospital.  They need to watch the pocket of fluid, makes sure it drains, get my electrolytes back in balance and try to get food going through my system again.  We may need to start some TPN, she says.  “NO.”  It’s automatic, maybe kneejerk from me but I am not going on TPN five days after surgery.  TPN is total parental nutrition.  It’s given through a vein and completely skips the GI tract.  TPN might be a shortcut for them to get everything back in balance but I know that it is hard on your veins and hard on your body.  Your liver, pancreas, gallbladder and kidneys are meant for TPN as a fetus when you have an umbilical cord.  My veins are already crappy.  They have already whispered in my ear asking if I have had trouble with my kidneys in the past.  I’m not agreeing to TPN right now.

More bad news, the abdominal drain has gotten turned so it is not directed to the pocket of fluid.  It will have to be pulled since it’s not doing anything.  That means nothing is there directly draining the fluid.  It leaks out when I move through the stitches in my bottom.  I settle into a routine of early labs, then bags, bottles and pills of whatever I need for the day to try to get everything balanced again.   IV sites don’t last.  Every time I get up, fluid rushes from my bottom.  But I’m still determined.  I get the nurses to wheel me to showers.  I do my best walk, little at a time.  I’m wearing huge maternity mesh underwear and pads to help with fluid and even though food seems repulsive, if they ask me to try liquids, I do.  Soft’s, I do.

The weekend rolls around again.  Maybe I can try some solid food since things are looking some better.  I do.  On Saturday, a resident has the bright idea to put in what he calls a “mushroom drain”.  This drain will go in my bottom at the top of the stitches right in between them.  It will allow the fluid to drain better.  It’s a tube with a little cap on the outer end that looks similar to a mushroom.  He tells me it won’t be fun but I’ve been through a lot and can handle it.  Wow.  No anesthetic, they just shoved that tube right in those stitches.  Then they numb a little spot on your butt cheek and put in a couple stitches to hold in place.  This is not the Barbie butt I had envisioned.  It’s the weekend, they have trussed me up and given me food.  I decided to try for home again.  Sunday morning it’s the first thing I asked.  And wouldn’t you know it, I got lucky.  Another resident looked at my labs that morning and they were stable.    I was still dizzy when I got up for very long, my heart rate was still high, my output was still high and fluid was still pouring out of my bottom but my labs were stable and I wasn’t puking solid fluid. 

He let me go home!   If I had had any idea what was too come, I would have stayed the next week instead of begging to go again.

Not just another statistic

I’ve been quiet for a while now and I wish I could say my silence is because I was so busy with life and doing so well with treatments, had adjusted to my ileostomy beautifully, that I simply didn’t have time to write.  Unfortunately, that isn’t what happened.  I nearly became just another statistic in this fight against chronic illness.  Too many of us have read the obituaries of others with Crohn’s Disease and Ulcerative Colitis that are supposed to be life-altering but not necessarily fatal.  Nearly all of those obits say the person died of “complications” surrounding their disease, not the disease itself.  Is there a difference, really?  Yes, there is.  Every fact sheet I can find says that although there is a higher rate of colorectal cancer and some other cancers in patients like us, none recognize the deaths from the increased risks associated with surgeries, drugs, etc.  Under complications you will find things like eye irritation or mouth sores but not complications that might lead to death or needing an organ transplant.

http://www.ccfa.org/resources/facts-about-inflammatory.html

That’s where I found myself these last two years, fighting, struggling and living day to day with those complications.  What started out in April, 2014 planned as a relatively simple surgery turned into a complicated surgery with 10 day hospital stay after more than one “hiccup”.  Things snowballed and 2014 turned into the year of nine hospital stays, two major surgeries, two minor surgeries, four other surgical procedures, four different antibiotic resistant infections, three picc lines, seven CT scans, stays in the ICU, acute care unit and telemetry unit.  So many antibiotics and tests in so many different departments!  Then there was the home health care nurse and physical therapist and insurance changes, not to mention drug changes.  It was all completely overwhelming and unbelievable, even while I was there, living it.

I spent 2015 trying to get some semblance of my health and life back together.  I’d been left barely able to sit up, not able to walk through the grocery store and in major pain.  Fear crept in.   Getting back on my feet enough to simply dress, eat, nap, make some dinner with my family or go out for a meal has taken a lot of work.  I have panic attacks over everything and nothing.

When I started this blog, I wanted to help others, raise awareness and hopefully let others know that you could do this.  You could still live in spite of chronic illness.  Now I need to know that myself again.   It’s time for me to tell the whole truth of all those complications, even if they are ugly and might not be very inspiring, because in the end, I survived.  Knowledge is still power.  Knowing what can happen, why it happens and what we can do about it may help someone else

Stay tuned . . . 

A few weeks before the 1st surgery in 2014.  I told everyone I was having "just a
little surgery" and made plans for a girls lunch in another month or so.  I had no idea
the dangers ahead or the changes in store.

Sleeping (or trying) with an Ostomy

I adjusted pretty quickly and easily to my ostomy.  I’ve had my moments, like crying over chili, but for the most part I go through my day with my ostomy bag not being any more of a hassle than wearing glasses or contact lenses.  I really do sort of forget that it’s there as I go about my day.   I will forever have to pay attention to what I eat but I’m talking about the actual ostomy bag.

People get hung on that part, the bag.   Once you have adjusted, figured out your wardrobe and what you are comfortable with and wearing, the bag itself is just not that big a deal.   Yes, I know it collects waste in it.  Well guess what?  Everyone “goes”.   I empty it, wipe off the end and wash my hands.  Others “go”, wipe their hineys and wash their hands (we hope).

At night, however, it’s a different story.  Sleeping with Moxie and her bag is still a little bit like sleeping with the enemy for me.  Or maybe it’s a little like sleeping with a new baby.  I never really know what to expect.

Certain foods are supposed to be more gas producing than other.  We all know this so obviously you would want to avoid anything that causes gas before going to bed.  Imagine waking up with a balloon glued to your belly.  But sometimes, I continually wake up with that balloon glued to my belly for no reason at all!  If you roll over on that balloon, it hurts.   I do not like waking up to burp Moxie’s bag.

Some nights, for reasons I absolutely cannot figure out, I put out fluid all night long, meaning getting up over and over to go to the bathroom.  And nearly every night there is that time in the early hours when my guts decide to get active.  I’m lazy, I don’t like getting up.  So, I wake up, feel and wonder if I can get in another hour or two before I have to get out of bed.

I’m also a “tosser”.  You know, I roll over thousands of time every night; I toss the covers every which way and wake up with the bed a complete mess.  I was/am always afraid of what I was going to do during all that tossing.  And I’ve done it, too.  I’ve rolled my bag up in my nightshirt.  I’ve squished it until the edges are barely hanging on and I have scratched in my sleep until I nearly bled.  I discovered hugging a body pillow and rolling it with me helps some.

There are also the number of times I wake up because I've been on one side or the other too long, so it's hurting.  Thank you, Mr. Arthritis.

I’m still always hoping that I will find that magic combination or formula so I will know what to expect at night and can get a solid eight hours sleep without waking up either needing to pay attention to my ostomy or worried that my ostomy will need attention.

Have you found the formula?  Do you have any tips?  And if you don’t have an ostomy, is there something that you would like to know?  Please ask and I’ll share.

Starting the New Year with a Bang

We are five days into the new year, 2014, and I have started it with a bang.  How about y’all?

There are some old traditions in the southern United States and I enjoy keeping them.  This year, I decided that Moxie wasn’t going to stop me from enjoying my traditional New Year’s Day meal for luck and money.  I cooked ham, hoppin’ John, greens and made a banana split dessert.  Hoppin’ John, for those of you who don’t know, is blackeyed peas, rice, cheese, spices and some add tomatoes.   The saying goes, “eat poor on New Year’s, eat fat the rest of the year.”  The greens represent bills, the blackeyed pea’s coins; ham is the cheapest of meats.  And if you have an ostomy or IBD, then you know that all this food is seriously dangerous!  I was playing with fire.    My boys make fun of this traditional dinner every year while my husband and I enjoy it.   I took some simethicone before I ate the hoppin’ john and only had a few bites of the greens but still had my New Year’s Day dinner.  More simethicone before bed and thankfully, I woke up during the night when Moxie’s bag was blown up like a balloon with NO explosions.  Dinner successfully done, maybe I am starting to learn how to eat a few more things and manage.

The past few weeks have been painful, however.  My joints, back and guts have hurt.  On New Year’s Eve, you could actually feel a hard knot just below my belly button on the left side in my abdomen.  The output from my ileostomy seemed perfectly normal so I had no reason to be worried about a partial blockage.  Nothing that looked like a hernia, either, just this hard spot you could feel that was also sore to the touch.  By Thursday, I think I discovered the cause.

When you have a colectomy and keep your rectum, if someone doesn’t tell you that you will pass mucus, it will come as a big shock the first time you have the urge to “go” again when you know that you are no longer connected.   Well, the past few days, I had another shock.  I have not only had the urge to “go” passing nothing but mucus but I’ve had that urge as frequently as if I were having diarrhea again.  Sometimes something happens, and a lot of it, other times it does not.  And there was actually a time that I could not get there fast enough.  Let me tell you, I was so shocked that I wasn’t sure what to do!

I have an ileostomy!  I do not pass poo!  Yet here I have been the past few days, actually running to the bathroom because something was going to come out.  It can happen.  My abdomen is no longer so sore and the knot is no longer as hard, either.  However, my poor rear was so raw by Saturday I was actually looking for something to put on it.  With no poo coming out of it!   Never did I dream that mucus could constipate a person, break free and give you diaper rash.

I’m guessing this is not a normal circumstance and from the looks of things I probably could use an antibiotic.  When I have my insurance information again, giving the doctor a call will probably be a good idea.  I had to change and haven’t received any of the new information yet, but that’s another post.  I think I’ll call it . . .  Open Enrollment.

Life is never boring, that’s for sure.

Being Average and Inspiring

You know what one of the greatest things in the world is to be?  Normal.  To just be an average person living an average life, doing the average things every day is one of the greatest things in the world.  Things like getting up every day and getting dressed all by yourself, going to a job or career of your choosing, feeding yourself whatever you like, watching or playing in a ballgame, maybe coaching your kids, maybe just playing in the yard with them, cutting the grass, walking the dog, doing the dishes and yes, even cleaning the house.  There is great joy in living an average, normal life.

It doesn’t sound very exciting to aspire to be average, does it?   Doing normal things doesn’t sound very inspiring, either.  There have been times when I truly could not cook for my family and they had to carry me Gatorade or help me around.  Being able to cook a good meal is the most awesome feeling in the world.  And, family to help out without complaining when I’m not quite up to it myself is also inspiring.

Every day that I can be average, normal, is truly a gift.  It’s a new inspiration. Another opportunity to work, play and choose happiness.  And if I can do that in spite of having more than one chronic illness and an ileostomy then can’t everyone?  Each day doesn’t turn out like I plan but each day, I try.

For so many people, it is only when they can’t do these normal, average things that they realize just how great that life is really.    This is fuel for me.  I want to wake people up not only to arthritis, IBD, Celiac Disease and living with an ostomy but also to just how great living a normal, average life really is and what that means.  I want everyone to appreciate those days while they are living them not when they are looking back on them.   If people living normal, average lives can appreciate their own, then maybe they will cheer for me when I have a normal day.   And maybe they will be more understanding when I am not having an average day and need a little extra help. 

Adversity

“The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan

If only that were completely true.  Have you ever taken a good look at some of the flowers considered most rare?  While beauty is subjective, I don’t find some of them to be beautiful at all.  In fact, some of them are downright ugly to me.  Others are quite delightful to look upon and marvel.

Another quote about adversity reads, “The fire of adversity will melt you like butter or temper you like steel.  The choice is yours.”  That seems a little harsh, doesn’t it?  That we must become like steel when dealing with adversity in our lives. 

Living with and being a survivor of any chronic illness is overcoming adversity, day after day.  Does it make each of us beautiful or temper us or melt us in the same way?    Does it even make one of us beautiful, hard like steel or melt us like butter all the time?  I don’t think so.    There are too many hills and valleys with chronic illness.  We must face each day with new purpose, new resolve and new determination to fight to be well.  Some days are really good and we are really beautiful.  Some days we can’t help but melt like butter.  Each day we need some temper, like steel, but not so much that we are hard-hearted and cold to the world around us.

One of my favorite quotes reads, “I am strong because I am weak.  I’m beautiful because I know my flaws.  I am fearless because I have been afraid.   And, I am happy because I have known true sadness.”

Each of those things applies to my life with chronic illness.  And each of the positive is a choice I make over and over again.  We each choose how adversity will affect us and whether we bloom or not.  I bloom best when I choose strength, courage and happiness.

A Professional Patient?

I have on staff, a general medical doctor with nurse practitioner, a rheumatologist, one gastroenterologist, one colorectal surgeon, a neurologist, an ENT/allergist, two gynecologists (I’m complicated since I have an ileostomy) and a host of nurses and lab technicians who assist those people.  You know what?  I was not meant to be a professional patient!   I am the care giver.

I was supposed to go to the doctor, get fixed, and go home.  Isn’t that the way it works?  You get a prescription for 7 to 10 days and by day 3 or 4 you are better and wondering why you need to take the rest of those pills.  There are many, many people with a chronic condition, illness or pain so I know there are a lot of you that can identify with that not working.  So, I accepted it when that wasn’t going to work for me and decided to just get on with it.  What’s next?   When I had one doctor, one diagnosis, one treatment plan, I could go in, get all the information, ask all my questions and come out knowing what I needed to do.   But when you have one auto-immune illness you are more likely to be diagnosed with another, like an arthritis and IBD in my case.  Multiple doctors, multiple diagnoses, multiple treatments and medications can get confusing.  You can begin to feel like you are the professional, like being a patient is your job.

That is not supposed to be me!  I’m the caregiver.  I don’t say this out of indignation.  (Well, okay, maybe there is some indignation there.)  This is actually what happens to me when I am in the office in a chair or on the examining table.  Doctor, “how are you?”  Me, “I’m fine.”  What?  Did I just say that?  Doctor, “how’s your pain?”  Me, “okay, I can stand it.”  Again, did that just come out of my mouth?  I’ve been doubled over!  Doctor, “do you need any refills?”  Me, “I’m not sure, I don’t think so.”  In my head, how could you not be sure?

A visit to the doctor with any member of my family, or any friend is completely different.  I am the greatest health advocate they have.  I will remember everything they need, have a list of symptoms, a list of question, jot down what needs to be remembered, ask about the medications and side effects, you name it.  I have had people ask me to go with them a second time after I have gone with them.  I had a doctor ask for me by name to get a health history for a family member in crisis because they knew I would have all the information.

So, what happens when we ourselves get in that chair or on that table that turns our brains into jelly?  I’m not intimidated by doctors so that can’t be the problem.  In fact, I am very comfortable with mine.  Is it just the fact that the whole experience is overwhelming and intimidating?  I find that all the things I tell other people to do so they have a good visit with the doctor, I do not do for myself.  I just go.  I don’t prepare.  If I am going with a family member or friend, I prepare.  Every time I leave the office, I say next time I’ll be prepared.  And next time, I’m not.

I think I need a friend like me who needs an advocate but can advocate for me.  If you are in the same place, find someone to go with you.  Or hey, give me call, maybe we can trade appointments.   At the least, get yourself a notebook.  Write down all your medications and all your allergies.  You can jot down your questions as you think of them so you will have them in the doctor’s office.   And you can make notes before you leave the office of things you need to remember to do.  Really, I should take my own advice.  But if I do, will I be a professional patient instead of caregiver?  Is that why I don’t?

Happy Birthday or Anniversary . . to Me!

It's been a year now since I had my colectomy, a whole year.  On March 5th of last year, I had an appointment at the hospital to get registered, have labs, do all the paperwork, talk to 5,000 people and be completely inspected and meet with a new friend, my stoma nurse.  She looked at my belly while I was sitting, standing, leaning, bending and every way possible and drew possible site for my stoma.  I was exhausted when I left the hospital.

Even though eating was causing me great pain, and I'd been having diarrhea for months after just a scrambled egg, I'd still had to take laxatives for a couple days in the evening before this appointment.  I was terrified that I would need to run for a bathroom.  I can't remember exactly what I had eaten the night before but I think it was a pudding cup.  Pudding cups and cottage cheese that I had been putting in the blender were about all I had been eating besides the eggs for about a month.  When I left the appointment, I had some tea.  Liquids only for that day.

I also discovered one of the biggest lies in the world that day.  Liquid magnesium citrate with a label that says "pleasing lemony flavor".  Biggest lie ever!  You see, my diarrhea, not eating and laxatives were not enough.  I was having my colon removed.  We had to be absolutely sure there was nothing left in it.  Lemony magnesium citrate first makes your mouth pucker until cheeks hit your teeth, then your eyes start to water and then it begins to take the hide off of your tongue.  It has enough malic acid to peel paint or clean toilet bowls.  Thankfully, I had some agava syrup in my cabinet and since it was a clear liquid and I doctored my pleasing lemony flavored magnesium citrate until was actually palatable.  Between trying to swallow it all and running to the bathroom I think I was up all night long.  I didn't care.  I was so anxious for March 5th to be over and March 6th to arrive.  Finally it did.

I should have been nervous.  I should have been scared.  This was a big operation.  The nurse told me a sedative had been ordered for me if I needed it before going in to surgery.  She saw me smiling and said that I didn't need it.  My family might have needed it.  All I could think of was that I was so ready to take this step and get healthy again.  When you see me smiling in the pre-op picture, except for being so thin, you probably wouldn't know how sick I really was because I was so relaxed and finally feeling hopefully.  And wow, was I sick.  In those first few days after surgery, it really showed.  I couldn't hide how thin I was in a hospital gown.  The surgeon told my family how malnourished and dehydrated I'd really been.  My veins were blowing and it took a while for my small intestine to start working again.  But I kept pushing.  I got up the day of surgery and I have another picture that same day.

And now, it's a year.  Some days, it's seem like yesterday.  Some days, it seems like forever.  I can eat!  I've gained weight.  There are times I completely forget that I even have a stoma and bag.  There are days that it's all I think about.  I will never be the same but who is ever the same as they were a year ago?  I am healthier.  I am more "normal" now than I was a year ago.  So Happy Birthday Moxie.  I'm glad that I have you.

Ostomy Awareness

Hey y'all!  It's been a little while.  I over-extended in December (don't many of us) and have been fighting sickness since the week after Christmas.  During that time, I've thought of so many things I should be writing about.  Yesterday, this just starting flowing out.  Hope it touches some of you.

My ostomy saved my life.  Since I have no colon, I imagine I will have it for the rest of my life.  It has also drastically changed my life.  I have to think, now, about what and when I am going to eat.  If I am going out, will I be able to able to empty the bag?  Will I be in a situation where the stoma might make noise?  While my diet was in no way normal before, it is not now and will never be again.  For the rest of my life, I will have to be concerned about hydration.  I have to think about when and how much I eat before bed or I may be up all night or have leaks.  Thinking about clothing is completely different.  Not because of vanity or being concerned if the ostomy bag shows, although that is part of it but because you simply can’t have waistbands on your stoma.  Don’t get me wrong, I wouldn’t go back to how I was living before my ileostomy for anything in the world. 

It also breaks my heart to know that children have to learn to deal with all of these things.  I want them to be teens and sleep 10 or 12 hours without having to worry about emptying a bag.  I want them to eat all the popcorn, peanuts and candy they want at a movie or ballgame without worrying about a blockage or hunting the nearest restroom.  I don’t want them to have to carry a bag of supplies with them everywhere like a diaper bag.  I don’t want them to have to run to the teacher or nurse at school because they have had a leak nor have other kids laugh.

I want awareness and people to know that having a bag is not a “bad” thing.  That having an ostomy is nothing to be ashamed of or hidden.  I also want them to know the drawbacks and how it really affects us, especially children, so they will be more understanding in all those situations when we need them to be.  Those times when we need to use the handicapped bathroom.  The times when we really do need to pick a different restaurant so we can find something we can eat without having to choose the same old plain grilled chicken breast, no sides, once again.  So they will help me be discreet, if I am ever out in public and need to hurry to make a change because of a leak instead of looking on in horror.

I want better medications before ever reaching the point of needing the stoma.  Medications that don’t have awful side effects along with them like hair loss, severe fatigue, nausea, vomiting, mood swings, weight gain and loss and increased risk of cancer.

I want tests that do not rob you of any dignity you ever had and leave you feeling violated.  Tests that don’t cause you further pain and humiliation and leave you feeling sicker for days.

Most of all, I want a cure.