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.

IBD, Hysto, Frustration

It's December!  I want to say, how did we get here?  Wasn't it just April?  I feel as if I just blinked and the months have gone by.  And, by the same token, I feel as if I had been sidelined yet again while life passed me by and I could do nothing but watch.

When Moxie (my stoma) entered my life and half my guts left, that was supposed to mean the end of at least half my pain, the abdominal pain.  It didn't end.   I had the colectomy in March of 2013 and in the summer of 2013 started trying understand why I was still having low pain.  No, it wasn't a urinary tract infection.

I think I was tested for every kind of infection a woman can have including several that I would probably have gotten divorced had the result been positive.  Once again, tests leave you feeling violated and humiliated.  An ultrasound.  That doesn't sound bad.  Yeah, until you get in the room and discover how and what.

So after being subjected to tests that rob you of any dignity with IBD, when having to do them at a GYN looking for a problem it was NOT any easier or any more dignified.  And you know what?  The pain was the same.  I don't know how I would have known the difference between the two abdominal pains.  In fact, I wasn't sure that I did know the difference except that I kept a calendar and charted pain.  One pain made the other pain worse.  I already had the ileostomy so there are less guts to be inflamed for me.

Once again, I started reading and researching and found this is not an uncommon issue for women.  Cysts, endometriosis, heavy bleeding and painful periods are very common for women with IBD.  So why do our doctors not work together and ask us these questions?

Why must we go from one to another and search for answers?  Why do specialists stand alone like they are on islands miles apart in the ocean rather than being linked together like the paper chain around Christmas trees?  Why do we call or go in and report a symptom, only to be told, "you will have to see another doctor for that."    And once you already have a chronic illness or condition, then the doctors get even more complicated.

I want simple!  I want easy!  I don't want anyone else to have to go from their GYN to another higher risk GYN only to find out that if surgery is necessary, another doctor will needed, another office, another wait, more forms, more history (yeah this electronic stuff is not that good).

I want the doctor's we need to be like a mall.  They just refer you right next door and you get in next week, your paperwork is already there.  No filling out all new forms.  No bouncing back to the first doctor, you just go on to next one you need until they get it right.  Maybe we could save some time and energy in our healing.

In September, I had a total hysterectomy.  Because I have an ileostomy, I had a complex pelvic/oncology gynocologist treat me.  It took from April, 2012 to September, 2013, five doctors and me telling the doctors that something was wrong, I was having pain.

I'm healed from the surgery and I would like to say that I am pain free.  However, I still have arthritis, I may have another IBD surgery in my future and it's insurance open enrollment.  That's causing me pain at the moment.

Frustrated.  That one word describes how I am feeling with doctors, insurance, pharma, hospitals, and even the big "foundations" that are supposed to help us all.  Do you feel it, too?  There are so many individuals that have worked hard in grassroots efforts to reduce the stigma associated with our diseases and conditions and yet the big people, the ones with the real power don't seem to be hearing.  How do we change it?

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.

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.