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.

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.