Bowel Obstruction, Infection and Many Days in Hospital

On June 29, 2015 I went to Ottawa Hospital for the first day of a clinical trial for BBI608 (https://clinicaltrials.gov/ct2/show/NCT01775423).  The plan was I would take the first dose of pills, and then stay for 8 hours in Pharmacology in the hospital as an outpatient.  Over the course of the day multiple bloods tests would be taken for data for the research.  The side effects expected were limited to fatigue and minor digestive complaints.  I would spend the night close to the hospital at the Rotel and return the next day for one more set of blood work and vitals before going home with a 30 day supply of the drug.  My husband and I had booked 2 days off work.  But that is not what actually happened. 

Lots of  blood collection planned for research data

Pretty innocent looking pills - minion like!

I did take the pills in the morning but by noon I was getting familiar pain and gurgling in my left side – bowel trouble.  It quickly escalated to vomiting, diarrhea and a lot of pain.  The nurses put a nasogastric tube (NG tube) in.  The pain got intense and sometime that afternoon I passed out.  The Pharmacology unit does not typically have this type of situation but the nurses were amazing.  I was transferred to the ICU unit in septic shock.  Multiple images and assessments were done thru the night and in the morning Dr. Nessim took me to the OR urgently for septic shock caused by a large bowel obstruction.  In the OR it was found that my large bowel was completely necrotic (black and ruined from years of living with strictures caused by scar tissue from previous surgeries) and necessitated removal of it as well as 10cm of small bowel.  I was given an Ileostomy https://www.youtube.com/watch?v=_h9gXzi7KtU.  The amazing part of this was Dr. Nessim is a sarcoma surgeon so she also debulked a lot of my existing Sarcoma tumors.  How blessed I was to be treated by her in this emergency situation. 

I had a really hard time in the ICU.  I didn’t know what was happening, there was a breathing tube in my throat but I didn’t really understand.  I was confused…I thought I was being held against my will, drugged and kept from my husband.  It was terrifying the thoughts that were in my mind.  I would see the nurses preparing needles and I would be crying no, no.  I don’t remember my family being there although I know they were. 

I think even worse was what my family was going thru.  Mike watched me go from bad to worse that first day, passing out and nurses rushing around me as I hit a critical status.  In the night they called him into the hospital at 2:30 am because they thought they were losing me.  Then he had to wait as I went into surgery, a procedure that was high risk.  Then he had to stand by while I was in ICU, a machine breathing for me and my body very sick.  But after a couple of days I was recovering – the breathing tube removed and I was moved to a regular hospital room. 

I was like a rag doll in the bed, so weak and with an incision that seemed to almost have cut me in half.  Here though I could see family and the fear started to leave me. I still struggled with hallucinations…I knew every time I closed my eyes the room would change.  It changed in my mind and then when I opened my eyes I would have to sort out what was reality again.  I am realizing now that it was the effects of pain medication but at the time it was hard to make sense of anything. 

Discharge Day July 8

I would like to share you what it was like for my family but that is their story to tell.  It is a heavy load my family carried through this and I am so proud of how they banded together to support each other and me.  It is truly in the hard times that you see how amazing people are.  

July 8, it was 9 days after surgery that I was discharged.  I was able to get up and walk slowly, eat tiny amounts and it all agreed I would heal better at home now.  I was still in pain and my heart rate was too high, about 115 at rest but no reason could be found for it.  Mike took me home.  That night it was heaven to be with my family and sleep in a regular bed.  But in the morning I woke up not feeling well.  I had a glass of water and vomited it up.  Then I started to feel wrong.  I tried to eat, managed a scrambled egg, but then vomited again.  I went to bed with chills.  I asked my Mom to call an ambulance and I arrived at BGH emergency mid-afternoon.  I had a horrible experience there but won’t share the details in this blog.  About midnight the doctors at BGH decided I needed to return to Ottawa.  At CT scan showed there was a lot of fluid in my abdomen.  I was taken by helicopter which was a wonderful experience.  The paramedics explained everything that was going to happen, I was made as comfortable as possible on the stretcher and carefully transported by ambulance to the helicopter.  I was settled into the helicopter, well wrapped in a blanket and headsets so I could hear what was being said.  The view of Belleville at 2am was breathtaking.  And it only took 45 minutes to get to Ottawa.  There I was taken to the emergency room by the air paramedics, and they made sure I was safely handed off to the nurses in the ER. 

IV nutrition - yum yum

Ottawa was quick to take action, getting me to a room and assessing what was going on inside me.  Everyone agreed I was sick.  The CT scan that Belleville Hospital had done was not included in my paperwork and it proved to be impossible to get a copy of it sent to Ottawa (my last little vent about the problems encountered at QHC Belleville).  So I had to do another one CT test which was hard for me.  The medical team came to see my shortly after the scan was done.  It appeared there was a leak in my small bowel causing large amounts of ascites/bowel content to be leaked throughout the greater peritoneal space and I had Peritonitis.  AKA big mess of infection.  Surgery was considered but would have been very difficult considering my recent surgery.  Instead, a radiologist placed 2 drains in my abdomen.  This procedure hurt but it was effective and fluid started draining thru the tubes and out of the peritoneal space which meant we could avoid surgery.  I also got the NG tube back (down my nose into my stomach) to drain fluid and provide relief.  I was taken off food and liquid of any kind and put on a TPN supplement (nutrition thru IV) so my bowel could rest. 

And here I stayed til Aug 1.  34 days total in hospital. 

Facebook Posts - my words written during the hospital time

July 12 - Finally feeling up to making a post. I came home Wednesday July 8 and loved getting to hug my kids. Spent a quiet evening and sleeping my first night in 9 nights outside of a hospital. But I got up Thursday knowing something was wrong. These weren't typical healing from surgery feelings. I had a cold clammy sweat going, was vomiting up the water I drank, and my ostomy bag was producing far too much liquid. I was dehydrating fast. So by 1:15pm I was back to Belleville Emerg. It was a long wait, 5 hours before they started me on fluids and starting looking into what was going on. A ct scan showed fluid in my abdomen cavity and it was decided I needed to be back in Ottawa hospital. I did get an exciting helicopter ride and by 4am was in the Ottawa Emerg. The continued to stabilize me with fluids. unfortunately the cd of the ct scan done in Belleville didn't go with me and in this day of technology there seemed to be no way of transferring those image so I had to endure a second scan on Thursday. Hard because I had to drink the contrast dye and hold it in for the test, when in fact my body was by then determined to vomit up anything I swallowed. But test got done and within 30 minutes the surgery team was in my room with the results. A hole had formed in my small intestine, leaking fluids out of my stomach and into my body cavity. At first the surgical team thought I would have to go back to surgery that night - reopen the full incision, clean out the cavity and repair the hole. But then they came up with a second option - using radiation guided imagery place 2 drains into my abdomen. Plus a stomach tube ( down my nose). If we can clear the fluids away then potentially the hole can repair on its own. And we avoid surgery! The tubes were in place 2 hours after the scan was done and my relief was instant. So now we give it time. Nothing by mouth for me, tomorrow I will start feeding by IV. And we will let the tubes continue to drain. Antibiotics are given too just to help ensure we prevent infection. I feel quite good. I'm up doing shuffle walks. I can read books now. And this is my first look at Facebook in weeks. I'll be in hospital for the week at least. But everything is going in the right direction and I'm getting excellent care so it's all good. Thank you for your continued thoughts and prayers. I really appreciate your care and kindness. Much love. Hope there is not too many typos. Love teresa

Monday July 20 - it's hard to believe I am starting my fourth week in the hospital, and looking at at least a couple more. Talk about a 360 in life. I am grateful for the medical care and healing that is possible for my body. I can't imagine what it would feel like to not know how we were going to pay for medical care like our US neighbors. Or to live in a country where this care would not even be an option. These thoughts of gratitude give me patience. But still, I miss home. I have drains in place to keep all that toxic fluid out of my abdomen, so the tear and heal. No food, but strangely I have gotten very used to that. I am fed good stuff like lipids, amino acids and electrolytes directly to my blood through the IV. I am also grateful to everyone who is filling in for me at work and keeping things done at home. I miss you all, and hope everyone is having a wonderful summer. Enjoy your day.

That’s the facts of what happened.  But the story is much bigger than just the facts.  It’s taken me a long time to write about it.  Partly because I was really sick and writing at the time was impossible.  Then I was home but so tired and writing still seemed impossible.  And then it all seemed too overwhelming, I didn’t know where to begin and where to end the story.  This is not going to be my usual blog, I only have snippets to share instead of a complete thought.

The hospital time – when I returned with the infection I was placed in a 2 person room, next to the washroom (not the window).  At first this was fine, but over time, it really wore on me.  Not being by the window meant I had limited space, the curtains were drawn on both sides of me all the time, and I never saw outside.  It seems trivial now, like I am whining, but as the days wore on it got hard.  Time passed to slowly.  I didn’t have meals.  I read and read and read books.  My concentration was poor so I couldn’t manage any ‘projects’.  I found myself literally watching the second hand on the clock, tracking time 5 seconds at a time.  5 seconds 12 times became a minute.  Then 5 minutes.  Then ¼ hour.  Then 1 hour done.  The bowel rest was good for me, the pain subsided, the draining lessened and I was up walking the halls.  But still, I had to stay.  And stay.  Without knowing when the end would come.  I wish I could tell you a stronger story but I promised to be honest in this blog. 

There were many good moments in the hospital too.  Amazing nurses!  Excellent doctors! Visits from family and friends :)  The first morning there a friend called to say she was in Ottawa and had a couple of hours to spare – did I need anything?  What a blessing as I had arrived with nothing at all.  She arrived with a care package of essential toiletries, books and care items.  It was the best!  Family came to visit as much as they could.  One day Mike arrived and I got a pass to leave for a few hours.  He took me to sit along the river and watch the ducks play, then for ice-cream.  He was so kind.  I must have looked a mess and really wasn’t very capable but he smiled and made me feel like it was the best date ever.

Good news – no pain now.  I looked back on my journal and realized I had been having pain from the bowel strictures for many years.  Now that the damaged bowel has been removed I don’t have any of this pain.  How quickly we forget that we no longer feel.  My side is 100% comfortable now…I never have to spend time nursing a partial obstruction.  This is good.

I have no special way of ending off this blog.  Healing continues.  My path continues to wind up and down hills, sometimes with a clear view and sometimes not.  It is a good path.  My Lord holds me gently even when I can't feel his presence I know he is with me.    Bonds with family grow and strengthen.  Life is unpredictable.  And kindness is powerful.  

Much love and hope,

Teresa