19 days

Once I arrived at Mayo it was a flurry of activity.  I had been given an additional diagnosis of adrenal insufficiency while hospitalized in Kansas.  I was seen by my “normal” thoracic surgeon team, pulmonology, endocrinology, general and emergency surgery.  I also had a lot more blood work and more imaging done.

They agreed that my colon was herniated into my chest but wanted to manage it conservatively if at all possible due to my extensive surgical history and complications.  They were hoping with IV fluids, laxatives and enemas that we could possibly get things moving so to speak.  They did tell us upfront that the threshold for taking me to surgery would be very low and if we had no results in two days we would make that decision.

There was no success and the decision was made to do surgery on November 10th.  I had already been in the hospital since the 2nd of November at this point.  Surgery was quite long and extensive, it took over an hour just for them to get through all of the adhesions to access my abdominal cavity.  Once inside they found that my traverse colon was herniated through my diaphragm up into my chest cavity and folded over on itself.   That was one point of obstruction.  They also found another obstruction in my small bowell from adhesions.  Surgery was done by thoracic, general and emergency surgery.  After all the repairs were made and the colon placed back in abdomen they placed a jejunostomy tube (j tube) for feeding.

I got back to my room around midnight and started having flashbacks from my previous ICU stay in 2016.  Around 3am they called my husband to come back and stay with me.  I woke up with 25 staples, a wound vac over that and the j tube.  I had already had TPN (IV feeding) started days before as I was somewhat malnourished when admitted.

Fortunately, this recovery was nothing like my stay in 2016.  I had pretty steady but very slow progress.  The entirety of my stay was marked by “pray for poop” as that was key to going home.  I walked and walked and walked some more and continued to have no success.  They took out my epidural several days after surgery and thought maybe then my bowels would “wake up”.  That didn’t happen either.  I kept on walking.

My mouth was so incredibly dry.  I had been strict NPO since this started and could not even have an ice chip.  Only a mouth swab or hospital mouth spray.  All my medications were given IV and eventually transferred to my j tube.  I was still on TPN at this time as they wanted to start the enteral (J tube) feeds very slowly and only after they knew I could tolerate water flushes and medication.

The next hope was that transitioning to j tube feeding would help my bowels wake up.  They started with trickle feeding which is only 10ml per hour round the clock.  I was still on TPN when this started as that amount cannot provide enough nutrition.  After 24 hours they began increasing by 10ml every hour until I was up to 75 ml per hour for 24 hours.  This is the rate that I was eventually dismissed on.

I finally was able to have that magical bowel moment with help of enema and that was enough to prove that my bowels could work and was able to come home a couple days later that included a special “bowel regimen”.  I am pretty sure the pharmacy checker had to be impressed by the amount of laxative, softener, etc products purchased.

My husband had to go home shortly after my surgery because lets face it, one of us has to work and take care of our family.  Luckily, I am blessed with a husband that has been able to manage it all for years and never once made me feel like less of a partner, mother or anything else.

My mom came up the day before he had to leave to stay the remainder of the time with me.  My middle son also came up for three days after working a 24 hr emt shift.  I was dismissed finally on November 21st.  We didn’t get away from the hospital until mid afternoon and my amazing mom drove us straight through to home.  We arrived shortly after midnight.  I know we both wanted to stop but the thought of unloading me and just the things to take care of me overnight was hugely overwhelming and we just wanted to be home so badly.

The 22nd was spent mostly sleeping and seeing my family.  The 23rd was Thanksgiving.  I was so looking forward to be home for Thanksgiving but I didn’t think about how hard it would be to be surrounded by food that I cannot have.  I was actually fine while everyone ate and just stayed in the other room, but after dinner I absolutely fell apart in front of everyone and my wonderful hubby got me back to bed.

The weird thing is, I am NOT hungry in any way.  I don’t feel full, but I don’t feel like I need to eat either.  TV commercials have bothered me occasionally, missing out on holiday baking is a struggle, but it is all mental.  I really haven’t had an appetite since I lost my stomach but had gotten back into the habit of eating and eating frequently in an effort to try and keep my blood sugar from crashing.  With the j tube there is no hypoglycemia.  That has been an amazing benefit for me!

I have been able to increase my feeding to the maximum rate I am allowed at 125ml per hour.  I have to have seven cans of formula daily.  At that rate it takes 14 hours of my day.    I can choose those 14 hours, I can even split them if I want to but that seems like more of a pain in the ass than it already is.  I thought that I would try and do the feeding during the night and morning hours but I toss and turn so much that I am always kinking or pulling on my line and then my pump beeps and no one gets any sleep.  And lets face it, I don’t have a lot to do during the day.  So I mostly feed during the day and all evening.

I can be mobile, I have a special backpack that my pump and bag of formula fits in.  People stare some or look at you with pity, but hey this is my life and I am still here.  Don’t be sad for me.  I have a blessed life and I don’t ever have to look far to see how great my blessings are.  Could my life easier, heck yeah!  I would love to have my old self back but that will never be a reality.  I would love for all of my medical expenses to disappear and take away that stress.  I would love for my family not to have to worry about my health.

I have had some especially hard days lately as I still fight my appeal for my long term disability benefits from my previous employment.  My social security disability is being reviewed at the one year point.  It is unreal to me to live my reality every day and continue to have to prove that I am disabled.  I have been ill since 2004 and I worked full time until my employment was terminated in the spring of 2016 for exhausting my FMLA benefits.  I didn’t choose to quit working, I didn’t choose to unhealthy.  But since I have so many different conditions I am unique and don’t fall into specific conditions that I have to prove my illnesses more often than most.  It is mind blowing.  Trust me when I say that being sick is a full time job and then some…..