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.

The present - Pain and Panic

5 Things people with anxiety want you to know

I can’t write about the past and tell my story completely without including the present.  Actions, after all, have consequences.    It’s a long story to tell but you may be wondering, it’s been two years, are you well?  I wish there were a simple answer to that question besides the old, “right as rain.”

Psoriatic arthritis and psoriasis never seem to go in remission for me without biologic or anti-TNF medications.  I’m currently on Remicade every six weeks and methotrexate.   Despite having had my entire large intestine and rectum removed, I continue to have complications from IBD.  At least a few times a month, I get dehydrated.  If I showed up in the ER every time I needed fluids they would have to reserve me a room.

Pain and anxiety have become my constant companions.  I carry them everywhere.  A recent day illustrates life for me very well.  My son and I both need eye exams desperately.  It had been put off due to my health and hospitalizations.  Our eye doctor takes both walk-ins and appointments and since I have some good and bad days we decided to pop over on a good day as walk-ins.

When we got to the clinic we discovered it happened to be a very busy day.  If we waited as walk-ins it could take a couple hours.  The waiting room is filled with hard, straight plastic chairs.  I knew this would never work for me; I’d be in too much pain by the time I got to the exam to think clearly.  However, they had two appointments open three hours from now if we wanted to book those and come back.   That was perfect.  We took care of the paperwork and left.

A block over is a movie theater with thick, cushioned reclining seats.  It was the middle of the afternoon on a school day so there was no crowd.  I could treat my son and be comfortable.  This is something we haven’t been able to do for a while because of my pain.  We picked seats where I could not only recline but put my feet up.   Even though I went to the restroom right before the movie started, I still wasn’t sure I would make it to the ending.  I had to run as the credits rolled.  Still, we both greatly enjoyed the movie and the seating enabled me to watch without pain.

We grabbed a bite to eat, unfortunately, not on such comfy seats and headed back for the eye exams.  We sat in the dreaded hard, straight plastic chairs to wait our turn.  Should be any minute now, we have appointments.  Thirty minutes and I’m getting nervous and get a drink of water.   Forty and my heart is beating faster, I’m standing up.  Forty-five minutes and my face is strained, I’m hurting, my chest is tight, heart racing and the doctor has just taken in a family of four for exams.  An hour and I’m at my pain limit.  I cannot sit/stand in the waiting room any longer.  Worse, no matter how hard I try, I can’t keep the anxiety out of my voice when I tell reception to take our names off the list.  A tear streams down my face.  Not because they can’t get us in timely, but because I can’t sit normally and wait and the pain and anxiety is doing me in.  Reception apologizes profusely.  They told me to come back later to avoid this kind of wait.  There is nothing to be done now but go home.

A week later we had appointments in a new office, no wait, and were even able to order glasses and contacts the same day.   It went well.   I thought I’d treat my son to some lunch and pick up a few groceries since he is so good to drive me around, saving me some pain.  As we got up to leave, I felt this uncomfortable wet sensation on my belly.  It was very cold out so I was wearing leggings, jeans, a cami, thin long sleeve shirt and sweater.  I lifted the sweater to see everything underneath being soaked through from a leaking ostomy bag.

The world shifted and I was suddenly both nauseated and exhausted from anxiety.  I haven’t had a leak like this, especially in public in a long time.  Today, my guts decided pour.  I haven’t eaten a bite of food!  I should have known better than to put on those leggings, they rode too high on the ostomy bag, not short enough and not tall enough.  Home, I have to get home.

We speed through a drive through so son can pick up some lunch.  Then he gets me home so I can strip my clothes, get washed, changed and into something soft and hideaway under the covers the rest of the day.   A leak has never bothered me like this before.   It happens.  Today I couldn’t stop the effects of the anxiety on my body.

Do you share my struggle with anxiety?  How do you handle it?   Sharing this post will be a big step for me.  Two years ago, something like this would have not have entered my mind.  Now, I’m not trying to figure out how to handle the bag, or a leak, I know how and could do that eyes closed.   The anxiety is strangling me.

Read more about anxiety disorders from the National Institute of Health.

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.

Technology

Ah, technology . . . where would I be without you?  Confused, scared, feeling alone and probably in more pain is where I suspect I would be without technology.  Social media and Dr. Google both get a bad rap for many things these days but for learning about and connecting with others with chronic illness, they really are amazing tools.

In the first days of my illness, I had no idea how to cope or what might happen to me.  Just one symptom, vertigo, left me feeling completely isolated.  I found a group for people with vertigo and suddenly I was no longer alone.  The tests were no longer overwhelming or scary.  Someone else had already been there before me and had lived.  Imagine that! 

Next I received the psoriatic arthritis diagnosis.  There were so many well meaning people around me who said things like, “you are too young for that,” or “oh, I’m sorry, my family member had that and had to be in a wheelchair or couldn’t use their hands.”   Isn’t that is exactly the kind of thing you want to hear when you have just been diagnosed with a chronic illness.   And the dozens and dozens of cures people me told to try, well I could probably write a book just about those alone.  I might have gone crazy.

Reputable websites helped me sort out those things.  Oh sure, there are snake oil salesman on the internet.  Like the commercial says with tongue in cheek, “they can’t put anything on the internet that isn’t true.”   I keep that in mind and stay away from websites that can be verified.  Reputable and verifiable means having a physical building or magazine or network of doctors and people.  Maybe other reputable sites that link back to it and use the information or other networks that refer you to the site.  If you have heard of the website outside of the internet, then it might be a good one.

Good websites also provide many tools.  Medication trackers, allergy trackers and information, medication guides and interactions, pain trackers and guides besides care guides for your condition or illness.  They go beyond the standard description of an illness and point you to recipes, coping and connecting with other people like you.

Then we have the simple connecting with others.   I can’t even imagine how different my life would have been had I not reached out through the web.   I think I would have spent so much more time feeling isolated and very depressed.   I made read real connections with real people through groups, message boards and now all kinds of social media.  Those connections were more valuable to me than the nurse in my doctor’s office on a daily basis.   I have made real friends.

I have a portable TENS unit that I wear to help with pain.   All my ostomy supplies are neatly listed online and I can view my previous orders, see new items and get reminders for my next order.  I have applications on my smart phone for exercises, notes, health information and medications.  We have blood pressure and blood sugar monitors.  I have used biologic medications that I injected myself that came in one-time use pre-loaded syringes, no mixing, and no drawing up necessary.  We have so much new technology exploding it’s truly incredible.  I’m always amazed with what is happening next and yet at the same time disappointed that with all the advancement there hasn’t been more progress for autoimmune diseases and chronic pain.   Researchers and biomedical engineers, please keep at it.

Click here to see a list of Links and Resources for IBD,Ostomies, Celiac Disease, Arthritis, Chronic Pain.

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. 

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.

Pimento~less Cheese

The perfect lunch after an ileostomy?   Homemade pimento-less cheese, of course.  Okay, so small chopped pimento or roasted red peppers (especially without the skin) would probably digest fine but I've never really liked pimentos.  I only put them in because I am supposed to put them in pimento cheese.  Pimento~less cheese is so much more fun.

2 cups shredded Velvetta (or 1 cup velvetta and 1 cup cheddar)

1 cup mayonnaise

2 to 4 tablespoons sugar

dash (1/16th teaspoon) onion powder

dash (1/16th teaspoon) celery seed

This pimento-less cheese is creamy straight out of the refrigerator.  It's savory with a hint of sweet.  And sure, you could add the pimentos if you wanted.  Just chop a 2 oz well drained jar or can and throw them in.  For the record, I won't be eating all the skin on that pickle but I will take a bite or two.  Or, I will eat like a little kid with my front teeth, digging out the flesh and leaving the skin behind.  I'd forgotten how much fun that can be when nobody is looking!

You might have also noticed those are plain saltine crackers.  No fancy whole wheat, whole grain or seeded crackers for me.  I like them.  I really enjoy them, in fact, but low-fiber means plain white.  Low residue means no seeds or bits.  Saltines and I get along just fine.

This is a quick, easy recipe that is better if mixed up a couple hours or the night before.  You can fancy it up and make a beautiful presentation for all the "normies" but for us gutless girls, this plain plate is perfect.  ;)

Nothing to Wear?

I have nothing to wear and a closet full of clothes.

Isn’t this a standard joke about women?  That we have closets, drawers and bins full of clothes but still take hours to get dressed and can’t find the right outfit for the occasion?  Okay, so we like to look and feel good in our clothes.  What’s wrong with that?  Nothing!

I’m sure so many of you can relate to weight gains and losses.  And what that does to your closet.  What do you do with clothes that are too big or too small?   I find myself boxing up clothing to donate and then digging through it later wondering why I put that article inside.  Then I don’t send the box off and instead try to stash it somewhere to go through one more time, later.  This has served me well a few times when I had a sudden shift in weight again.  I’m tired of bins and clothing that only partially fits!

Now I have a new challenge besides just finding the correct size in all these clothes, the stoma and ostomy bag.  It is very true that you can continue to wear regular clothing after having an ostomy.  You don’t need to buy a whole bunch of special products or go to specialty shops.  You will make some adjustments but really, it isn’t hard.  Everyone finds the things that suit them best. 

We woman have pants with waistlines that range from just under the ribcage to barely covering the butt.  Somewhere in there is a place that is comfortable with a stoma.  For me, it’s just around my hipbones, right below my stoma.   I’ve tried still wearing pants with a waistline above my stoma but it just isn’t comfortable.  If the waist hits on my stoma, forget it.  I feel like I am choking.  Silly, but that is how it feels to me.  So I have pants that I know I am not going to wear because they are no longer comfortable with my stoma.  But some of them are brand new and really cute!  And what if I need something a little bit dressier?  I have to get over it and donate them or give them away.

Since I am wearing my ostomy bag on the outside of my pants, I want the top longer.  I’ve found some cute spaghetti strap tanks to add under shorter tops and sweaters.  I still have so many sizes though! 

And, just how long is it appropriate to keep a sweater anyway?  Why should I wear something that hangs off of me?  Do I keep it in case medications make me gain weight yet again?  Or, do I just bite the bullet and clean out this closet and keep only what fits and I know I will wear?

I went to the store the other day wearing a cute pair of skinny jeans that actually fit me and boots.  I have a butt again.  I was hiding the muffin top I have developed lately eating white stuff.  I caught a couple people checking me out.  Instead of being offended, it felt sort of good.  I made a vow then to clean out this closet that is overflowing with clothes in so many sizes, with clothes that I might or might not wear. 

I’ve decided to keep a couple sizes but not in my closet.  I will put them in a bin again and put them away.  It won’t be everything, just the clothes that I will actually wear in that size.  Everything else is going into a bag immediately and to the trunk of the car.  Then I won’t be able to get groceries again until I have dropped them at the donation center.

I used to hate showing pictures of myself in all the sizes but here goes.  Being healthy is so much more important to me now!   

Sept 2009.  Me in the red, at my heaviest after meds, trying to hide .

April, 2010.  A more normal weight and having no idea what was coming.

Sept, 2011, Just hanging on, hoping a med would work.

March, 2012.  Surgery Day!  Skin and Bones and joking that I looked like a poster against meth or crack.

November, 2012.  Looking more like me again but wearing a shirt that is too big.

Death by . . . Gramma

Death by . . . Gramma?

I have joked for years that if I am found dead in bed one morning, don’t assume that I have had some kind of heart attack or blood clot.  No, first thing you assume is manslaughter.  Not first degree murder because my husband will have been soundly asleep when he killed me.  He runs, fights, talks and all kinds of things in his sleep.  More than once I have been awakened by him half sitting, adjusting his pillow and laying right back down on top of me, pillow on my face or head.  Manslaughter, I tell ya.

My mother-in-law is also subconsciously trying to kill me.  What is it when you didn’t really intend to kill someone but you should have known better?  Reckless homicide?  That’s what the call will be.   It’s been going on for a while now so maybe we should up the ante.

Since my colectomy Gramma has asked me quite a few times about my diet and what I can and cannot eat now.  I’ve explained many times but the vegetables really seem to elude her.  Things getting stuck in the stoma and/or not digesting fully when you have no colon is really hard to absorb when you don’t see it firsthand.  I keep answering her questions and remembering answering my own Grandmaw all those years ago when she asked me every day after school “who my teacher is this year.”  Gramma is interested.

This year Thanksgiving was not so bad.  I have cooked for years.  Even last year when I couldn’t eat a thing but mashed potatoes, I cooked for everyone.  Gramma always brings some dishes.  She doesn’t have any standard dishes that she brings except pumpkin pie because well, everyone likes what I make and it’s plenty.   She’s tried several different dishes but none of them have ever “stuck” and been something everyone really wanted over and over again.  

Now I want everyone to be able to eat lots of different things and enjoy themselves but if I were bringing food to someone’s house, I would try to take at least one dish the hostess, who had done the majority of the cooking, could eat.  This year, Gramma brought cooked cabbage with onions (I would have been up all night long with a bag like a balloon about to burst), stir-fry vegetables (not a chance, stoma blocking for sure), a cranberry relish made from raw cranberries and raw pears with the nuts on the side (blockage here I come and I’m allergic) and gravy (would I forget the gravy?) besides the pumpkin pie.  This assortment is actually much better than previous years even though I ended up having to throw away the leftovers because nobody else in the house would eat them either.

Last year, it was a very appetizing looking baked cranberry dish.  I had only eaten some mashed potatoes and a bite of dressing because I was so sick but it looked really good and I like cranberry so I took some out thinking maybe I would try to eat it later.  I got a call later that evening, luckily before I had tried a bite.  Gramma knows that I am highly allergic to nuts.  So, she only put nuts in half of the cranberry casserole.  Then when she got here, she forgot that she had put nuts in half of the casserole.  When she got home, she saw a piece of tape on the dish and remembers that was to remind her that half of it had nuts but she didn’t know which half had the nuts.  I have anaphylactic reaction, throat and tongue swelling, wheezing, can’t breathe, to nuts.  I threw away the cranberry casserole.  Nobody else in the house would eat that either.  (She really thought I could eat the half without the nuts and be safe?)

The dinner before that it was a beautiful looking brownie, mousse type, whipped concoction that Gramma brought with her.  Son #1 has Celiac Disease and can’t eat any gluten so he was disappointed to learn the brownies were not gluten free.  Gramma suggested he pick the brownies out.  We’ve known for years he has Celiac Disease.  Those who did try the dessert remarked that it was really good.  Gramma was encouraging me to try it.  I was having the gut issues so I had been eating gluten free myself and wasn’t so sure about chocolate but it looked really good so I was standing there about to spoon up a little bit.  Gramma starts listing off the ingredients for me.  Brownies, chocolate pudding and cool whip; that won’t be too bad, I’m thinking.  And then, after a minutes pause, oh and just a half cup of peanut butter, she says.  I froze.  Really?  Just a half cup?  Well, if it’s only a half a cup, surely that won’t kill me, right?  Thankfully, I had not taken a bite.

At least this year the nuts came on the side, not in the dish.  Not that it really mattered since I couldn’t eat it anyway but she did try.

One of my favorites movie quotes is from Evan Almighty when Morgan Freeman as God says, “Let me ask you something.  If someone prays for patience, do you think God gives them patience?  Or does He give them the opportunity to be patient?  If he prayed for courage, does God give him courage or does He give him opportunities to be courageous?  If someone prayed for the family to be closer, do you think God zaps them with warm fuzzy feelings, or does he give them opportunities to love each other?”

Whether or not you believe in a God, these lines are certainly food for thought on patience, courage, wisdom, opportunity and family.   I’m finding laughter helps me with the patience and the warm fuzzy feelings.  I laugh, eat a drive thru something first or later if I have to eat at Gramma house, and joke that somebody should see that she is charged if I die after a holiday meal.  Same as my husband if I die in my sleep.

Hope y’all had a lovely holiday meal with family.

New Life with Moxie

Crying over Spilled Milk . . . or Chili

I never imagined a time when I would have to relearn how to eat.  I also never imagined a time when I would need to gain weight.  Both things happened to me.  Most people don’t understand just exactly what I mean when I say I couldn’t eat during the massive flare of colitis.  When I ate, it caused really intense pain and a lot of time in the bathroom.  Imagine a stomach virus that leaves you pale and sweating and never goes away.  After several days, you know that you need to put some kind of nourishment in your body but it just hurts.

Hunger typically wins out or some kind of medication gives a little relief.  It didn’t for me.  The more pain I had, the less I ate.  Hubby got very worried about me.  He was worried that I was also anorexic.    Many of us that are too thin have heard this and resent it but his reasoning was not my size but the amount of food that I was eating.  I also have food allergies.  For about a year, I ate nothing at all with any fish, shellfish, peanut, pecan, walnut, almond, or wheat; so, no bread, pasta, crackers or breading of any kind.  The next thing to go was any kind of tomato or raw vegetable, then anything with any kind of spice.  Finally, I eliminated anything except completely soft and bland foods and I ate very little of those.  

When a couple scrambled eggs caused me serious pain, then I ate even less.  I might have a pudding cup.  We tried a little bit of everything.  I tried putting everything in the food processor.  Have you ever seen cottage cheese after it has been in a food processor?  It tastes pretty good.  It still hurt though.  By the time I had surgery, I was eating pudding and cottage cheese that been in the food processor, about a cup a day.  I was malnourished and dehydrated.

After surgery, I was so relieved that I was going to be able to eat again.  I went into surgery dreaming of the things I was going to eat when it was over.  It didn’t quite work that way.  First of all, my appetite didn’t just miraculously come back.  They do make appetite stimulants for that, however.  And then, I was still afraid of food.   My colon that had been the reason for the pain was gone but in my mind, eating and food caused pain.  I had to get used to the idea that I could really eat again and it was not going to hurt.  It was slow going at first.  I tried something and when it didn’t hurt I would keep eating that one thing.  Slowly, I kept eating and I started gaining weight.

Now I had another new hurdle.  When you do not have a colon and do have a stoma your body doesn’t process food the same way.  Your colon absorbs the liquids.  Pieces of food can get stuck in a stoma.  All of the healthy foods like fiber are no longer good for you anymore because they can cause a blockage in a stoma.  Gas?  Well, when you are wearing an ostomy bag and have no colon it has no place to go.  The bag on your side just blows up like a giant balloon.  If this happens during the day you can let it out but at night if you don’t wake up it just keeps getting tighter and tighter and the gas just keeps building with no place to go.

So now I am eating again and have gotten over my fear but I have to figure out just which foods exactly I can eat that won’t cause a blockage or cause me to be up all night long with a bag full of air.  I’m finally excited about eating again.  I love to cook!  The weather is changing and it’s getting cooler.  I have several great soup and stew recipes that have always been favorites.  What is the first thing I make?  Chili, of course, my chili is famous!  Oh, was it good!  I enjoyed ever single bite.  I was excited and proud of myself.  Until 5am that is when my ostomy bag was so full of air and chili that it exploded all over me.  I stood in the shower and cried.  I cried all day over spilled chili.  I had finally gotten over my fear of eating, food tasted good and I wanted to eat and when I did that stoma and ostomy bag were putting up a fight!  I really cried all day.  Over spilled milk, er chili.  It wasn’t that I had to get up and shower or change the sheets and do laundry; it was the loss of something.  I was completely ready for the surgery and to have Moxie but I was unprepared for these feelings.  I wasn’t prepared to want to eat, for food to look good, smell good and then for it to still cause problems.   I needed to mourn the loss and change. 

I only cried that day.  I mean, not eating chili or eating only a very small amount and for lunch not supper is really nothing compared to dying now is it?  And I can eat again.  I’m back to a healthy weight.  I’ve learned to really like white bread instead of whole wheat.  I’m getting a little tired of green beans and really soft carrots but I’ll just have to get a little more creative about cooking.  I made more chili for the family.  This time, beside that big pot of chili, I also made a pan of goulash, meat, tomatoes and pasta with all the chili seasonings, minus those beans.  It was delicious!  I topped it with cheese crackers and a dollop of Daisy.  My mouth was so happy.  Moxie was also happy.  Life is good.

Getting to Know Me

So, how do you start a brand new blog?  I've had other blogs in the past but life got in the way and I didn't keep them up.  I decided to start fresh.  So first, I guess you need to know something about me and my very crazy, very full life.  These first few entries then are going to be a little background about all of us and how we got where we are now.

I think I have always been a caregiver even if not by profession.  The first time I remember acting in a role as caregiver I was around 7 or 8 years old.  My paternal grandmother was in the beginning stages of dementia and I spent a lot of time at their house.  Granddaddy called and asked if they could bring me over because Grandmaw was having a bad spell.  We went.  I remember asking why.  It was very unusual for us to go to their house in the evenings, I was there after school.  Dad just told me Grandmaw was having a bad day and it would probably make her feel better to see me and have me visit with her.  I did just that.  I remember being a bit confused but not at all scared.  By the time I was in the 4th grade and Grandmaw was asking me my teacher's name everyday after school, I understood she had some kind of old person thing wrong with her without anyone telling me.  And everyday after school, I told her my teacher's name without once being a smart-ass kid.  I have no idea why.  I guess because I loved her.

Throughout my childhood, I watched and was there while my dad's family cared for his mother, my mother helped care for her grandparents and then parents and when I could, I helped.  When my mother started having seizures in my teen years, she needed someone to help her.  When I started driving, I helped drive back and forth to hospitals and appointments with my mother and grandparents.  I was always with them.  My maternal grandmother had rheumatoid arthritis.  At 19, my grandfather taught me what a CNA now does when she broke both feet.  I could use a sheet and turn my grandmother in the bed, change the bed with her in it, take her vitals and I put her on and took off a bedpan more times than I would have liked.  And bathing, well that was easy.  Granny taught me you could stay clean without getting in a tub.  You just washed down as far as possible, then up as far as possible and then you washed possible.  Learning to shave a man's face when my grandfather had heart problems was not as easy.

I considered going into the medical field.  This was the 80's, however.  The medical field was something women did as nurses.  That just wasn't me.  If I did it, it had to be ground-breaking.  I needed it to be as a first responder, an EMT (we didn't have paramedics then) or firefighter or somewhere I could prove something.  Women didn't do that in my area during that time.  What happened?  I'm not exactly sure except that again it was the 80's and other things were exciting, too.  I decided I was really good at technology and that was also groundbreaking.  So, computers, here I came.  Not PC's, like now, the big ones we had back then.  S36's, S38's and the new AS400 that used RPG and RPGII.  Programming was fun, too.  For a little while.

Then in the middle of my 20's, I got married and along came a baby.  I was completely and totally hooked!  Everything about my life ceased to exist outside of that child.  And once again, my primary function became as a caregiver.  I opened a family daycare, meaning I had between 6 and 10 children daily in my home daily, certified by the state and subject to random inspections of property, meals, etc.  My sweet little son was hit with chronic illness, chronic asthma.  Not acute asthma attacks but chronic asthma where his lungs stayed in a constant state of inflammation until it would get so bad that he developed pneumonia or bronchitis.  Later in his life we learned he also had Celiac Disease and can tolerate no gluten.  Nursing once again became a primary function of caregiving.   And then son number two entered our world, kicking and screaming and never sleeping but laughing most of the time.  It didn't take long to learn he didn't fit the mold, either.

Not long after, life was completely turned upside down again.  I woke up one morning and couldn't move my knee because it was so stiff.  I decided I must have strained it, popped some Advil, limped and got on with the day.  A couple days later, I couldn't even get out of bed because the other knee was completely frozen.  I had to have help.  How could I care for children?  I had already been having terrible bouts of vertigo (dizziness) and ringing in one ear that was thought to be some weird Meniere's Disease.  Now, I couldn't move my knees?  What was happening to me?  It took about two years for me to get a real diagnosis.  It the meantime I was terrified by all the things thrown out that "it" might be but was not.  I have Psoriatic Arthritis and not Meniere's Disease but AIED, auto-immune inner-ear disorder.  PsA is similar to rheumatoid arthritis but it goes with the skin condition psoriasis and does not always affect both sides of the body equally.  It can also be more devastating to your spine.  Over the years I have had discs bulging and rupture and now have degenerative discs in all three areas of my back, cervical (neck), thorasic (mid back) and lumbar (lower) spine.  That means I am not a candidate for the pain management options like steroid or epidural injections or even some of the new surgeries.  I make adjustments.  You should me mop with rags under my feet instead of bending over a with a mop.

In 2010, as if ears, arthritis and DDD were not enough, I started having diarrhea a LOT.  I ignored it.  I saw enough doctors.  I already had a GP, rheumatologist, ENT and neurologist.  I did not need to add more.  Ignoring it didn't work very well so, I went on the gluten-free diet with my oldest son.  That helped out and I felt more normal.  Then I had a terrible flare up of arthritis and nerves in my back and took a few rounds of steroids.  On Memorial weekend of 2011, the diarrhea hit me and never let up.  It was worse than any stomach virus I have ever had in my life.  I was diagnosed with Ulcerative Colitis.  Another auto-immune disease than can go along with the type of arthritis that I have.  No matter what type of medications I tried, nothing helped.  I just could not eat.  In total I lost about 80 pounds over those two years.  I was malnourished.  Many days I didn't even have enough strength to pour myself something to drink.  On March 6th of 2012, I had a complete colectomy.  I was too sick at the time for anything but getting that nasty colon out of me.  I got my stoma, Moxie, that day.  Moxie saved my life.   Getting used to an ileostomy is not easy.  But it beats dying any day of the week!  Moxie wears a bag, of course.  I consider it an accessory.  The one I'm wearing now has a purple ribbon drawn on it for IBD awareness.

All of this surely sounds like enough, doesn't it?  Unfortunately, my abdominal pain didn't really stop completely after surgery so I have recently been to see my GYN again and discovered that I have ovarian cysts, fluid in my pelvis and probable endometriosis.  It looks like more surgery might be in my near future.  I'm hoping to just be rid of all those parts, too.

During these last four years, while being a patient, I have also been the primary caregiver for my brother-in-law after a traumatic brain injury.  Sound interesting?  It is.  Life is certainly not dull.  Therapies, appointments, tests, medications, paperwork and more.  How do I keep my sanity?  By trying to find the humor, enjoying everything that I can do and chatting with new friends who really understand what it is like to be a caregiver and to live with chronic illness.  I hope some of my stories after getting to know us will entertain and maybe educate you a little.