Ange's Got Moxie

Are you a strong person who refuses to give up or give in? Are you a patient or caregiver? I've been and still am, both. This blog is all about my journey. I also love life in the country and love to laugh and try to see things with humor.

Thursday, April 28, 2016

Chronic Illness, Pain, Opioids and the Pain Treatment Centers


Opioid pain medications and abuse are getting a lot of attention, deservedly so, this is a problem in the United States.  (As I type, yet another report comes on the news.)  Unfortunately, chronic pain patients are not getting the same attention.  It’s important that we remember that chronic pain is also a very real daily issue that affects quality of life for millions of people.  I’m one of them.

The state where I live has had some of the toughest regulations for opioid medications for years now.  There is a huge stigma associated with taking any kind of pain medication.  Admitting going to a pain clinic is tantamount to admitting that you have a drug problem.  This is could not be further from the truth!  

Yesterday was my regular appointment at a pain clinic.  I was not referred to this clinic immediately upon my diagnosis with chronic illness.  I was diagnosed over 15 years ago.  I also was not referred immediately after one surgical complication.  It was months after several surgical complications and nerve damage that I was referred to the pain clinic.  I have tried numerous other therapies.   At home, I still use relaxation techniques, music, heat and ice, stretching and a TENs unit besides pain medication.   Do you know what the only thing readily approved by insurance without limitations and huge expense for me might be?  Yes, pain medications.   I am willing to try any therapy recommended by doctors including acupuncture, massage, hypnosis, aromatherapy and would love physical therapy in a warm pool but it has to be affordable.  Chronic illness is expensive.

When I arrived at the clinic yesterday the waiting room was packed, as it is always.  There are many elderly people.  I’ve spoken to many people who drive three to four hours to get to the clinic.  It takes an hour for me.   The appointments are always the same.  After signing a card with your complete information, not just name and time, I try to squeeze in somewhere in the waiting room.

When my name is called, it’s back to the scales to weigh, get vital signs taken, go through any other appointments you have had, ER visits or hospital stays, medication changes, your pain level on those scales we all know and love/hate and when you last took any pain medication.   I move on to another room where I wait again to see either the doctor or a Physician’s Assistant or Nurse Practitioner.   Each patient only sees the doctor a few times a year, seeing the PA’s and NP’s between.  Then I follow the yellow line to the lab.   Bathrooms and needles wait.  Each time, each patient must leave any belongings in a cubby and urinate in a cup.  There is a big gray tub for the samples.  I place my sample in the tub with all the others and wash my hands in view of the nurses and gather my purse.

Back to the waiting room where I let them know I am finished.  I’ve seen the doctor this trip.  When they call me to the next window I am scheduled for an extra appointment to try an interventional procedure, a steroid shot in my Barbie butt gone wrong.  I’m really anxious about it so I ask for an appointment with a counselor, too. 

Now it’s back to waiting.  The waiting room is so packed there are almost no seats left.  One woman and man tell me they have been waiting for an hour and half and two hours since they saw the doctor or NP.  We must all sit in the waiting now for someone to bring out prescriptions.  They bring out stacks at a time, like handing out fliers.  Only these fliers are carefully guarded.  You have to show a picture ID to receive one, sign your name and initial here, here and here.  There is no privacy; the entire waiting room can see how many fliers you get, even if they don’t know exactly what is written on the flier.  It doesn’t matter.  This waiting room might not be made up of the same demographic of people but we are still all the same, we all hurt and we all feel degraded, shuffled in and out following the yellow and blue lines.

Am I better served here than with my regular doctors?  The government thinks so.  It’s the response to opioid abuse.  I think what happens to me is more likely to fall through the cracks.

Hyperbole and a Half - A different kind of pain scale

Acute vs Chronic Pain

US Pain Foundation - It's Time for the Pain Community to Organize

Dr. Oz on Doctor's and Opioid Pain Medications

Opioid Abuse and Chronic Pain - Twin Epidemics

Forbes - One Orthopedist Prescribing Meditation Over Medication

Tuesday, April 26, 2016

The missing drain - Back to the hospital

I dissolved into a big heap.  Husband and I were already on edge.  His truck blew up while I was in the hospital and I thought it could wait to be fixed until I was at home and he could use my car.  He did not.   I was stressed from everything going on with my body; he was stressed worrying about fixing vehicles and paying for it.   Then I came home and we tried to deal a huge, painful open wound together with almost no instruction.  It didn’t mix.  My parents and oldest son have gone south to their second home.  My sister is on an island working.   I called another cousin, an RN who worked in home care.  Blessedly, she took charge. 

Again, in five days, I had gone through 100 pads soaking up fluid from this wound.  It was swollen, painful, huge and I couldn’t see it.  Cousin was appalled when she saw what I was dealing with, that I had no sterile supplies and was alone.  She got on the phone with both the doctor’s office and a home health care agency.  It took more than one phone call and arguing with a PA over my need for home care but by the end of the day, I was set up with an intake appointment for the next morning.
When the intake nurse came out the following morning, I was never so relieved.  We still had to do packing changes but we had some help.  Husband still tried to help me, but it was just too painful and we were both so frustrated.  I ended up doing the packing changes myself, by feel.
As the days went by I continued to get weaker.  My heart rate got higher.  I started running a low grade fever off and on.  I reported it but the fever never got over 101, the required number to be “sick”.  The home care nurse was worried and thought I should be seen by a doctor.  I didn’t have the energy.  Finally, the nurse insisted and called my GP for an appointment the following morning.  I couldn’t wear pants, clothes hurt, but I had couple maxi dresses.  My son had to help me to the car then put me in a wheelchair because I was so weak.  The GP took my vitals, then told my son he was calling the hospital and to drive me straight back to the ER.   I groaned.  It was the last thing I wanted to do.

We picked up husband and my hospital bag and headed to the ER.  By the time we got there and they put me in another hard wheelchair, I was in so much pain from sitting, I begged them to get me out of the chair and stick me in any corner.   They took my vitals and told me I was a direct admit and headed straight to a room.  This is when I discovered the Acute Care Transition unit, not quite intensive care, not quite regular care.  By the time they got me to the unit and a bed I didn’t care where they put me.  I was in so much pain and so weak, I just wanted to get in a bed, on my side and off my behind.

My white count was sky high, indicating infection.  Doctors ordered another CT scan right away.  I was up all night with tests.  Besides showing that now I had a pelvic abscess, there was something that looked like a cotton swab in my pelvis.  They started asking me how I had been packing this wound and if anything could have gotten in it.  Oh, no!  I knew what it was immediately!  That mushroom drain they had shoved in the stitches and sewn to my cheek!  I thought the surgeon removed it when I was in the office and she was picking and poking before she packed the wound.  There was some problem with hospital records and some electronic records were blank in the files, including mine.  The resident who sent me home, my surgeon, and the doctor treating me now had no idea the drain had ever been put in.

Of course it was the weekend.  The nurses told me it was some surgical head, a big deal in the hospital, that came to see me.  He had an entourage and was dressed in a suit, not a lab coat.  First, he asked me to tell me him about this drain.  I did.  Then he asked his entourage to get him this and that.  The next thing I knew, I was on my side and he was digging that drain out.  Right there, in the room, in the acute care transition unit, no anesthesia, not even a local.  A resident said I was “handling it well.”  What choice did I have?

My 16 year old son was sitting across the room in front of me.  Husband had gotten us settled in the night before and gone home.    I couldn’t ask him to hold my hand where he might see was going on.  I couldn’t scream and yell and scare him senseless.  I was too scared to move a muscle, it already hurt enough.  This was barbaric.  When it was over, I was really in pain.  My Barbie butt had turned into GI Jane after an IED.  I mean no disrespect to our veterans, I don’t know of any other thing to make a comparison.

They ran a ton of antibiotics and fluids through me and kept packing the wound.  When my white count was down some the next day, it was decided I could continue antibiotics at home.   Another round in the afternoon by IV, then I could go home again, continue with the home care and keep the appointment I had with the surgeon.

Husband came to get us and we got antibiotics to take home and more supplies.  The last time I left the surgeon’s office I felt dismissed.  This time after being in the hospital, I felt deserted.  It was a very unpleasant experience and I wanted someone there with me, to tell it was okay, to be strong for me, to let me cry.  Instead, I painted my nails, smiled and got on with trying to get better as best I could.

Friday, April 22, 2016

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.

Tuesday, April 19, 2016

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.

Friday, April 15, 2016

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.

Monday, April 11, 2016

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.

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.