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.