Surprise Surgery! Part 3

Recovery from my total colectomy and adjusting to using an ostomy has been a challenge both physically and mentally, but I think I've made tremendous progress in the past week.

Once you start to come out of the pain killer and anesthesia fog, they keep you on a diet of clear liquids for a bit, the length of which depends on how your stoma performs, ie, whether or not anything comes out.  I was allowed to try some cracker type foods on Thursday morning, after a Tuesday morning surgery.  I was terrified about how to start, especially after being sugar free, starch free, gluten free and egg free for so long!  So I started with rice cakes and a couple of salty potato chips, ha.  I felt extremely sore and bloated, but the doctors all seemed happy, and I wasn't using too much pain medication.  Later in the day I tried some mashed potatoes and turkey, and they were getting ready to send me home Friday! I was terrified!!  I didn't know how to take care of my ostomy yet, and I started to feel like they were pushing me out the door without adequate training!  Infortunately there are only 2 nurses at this hospital that specialize in training people to care for their new ostomies, but one was on vacation and the other was seriously overbooked.  I was also supposed to have help from a social worker setting up a visiting nurse service to continue my training at home, but everything seemed to be getting lost in the shuffle and I just kept hearing "discharge!" over and over!  I was still struggling with the abdominal soreness and bloating, but was also having regular difficulty with nausea, which I suspected was from the strong antibiotics they were still giving me for c.diff protection. the IV anti-nausea meds worked well, so I agreed to go home as long as they gave me a script for anti-nausea pills.

Nervous and partially trained, I was discharged around lunchtime on Friday.  I arrived home to a peaceful house, the kids were at daycare (my daughters daycare has been wonderful these past 2 weeks working to squeeze my son into slots opened up by kids taking summer vacations!), and my sister was slaving away in the kitchen making a wonderful smelling stew, which I immediately had a cup of broth from.  I sat down on the futon with my sister and mother-in-law (who is also recovering from surgery this week, bladder, planned), and took a few deep breathes - it felt great to be home.  Scary, but great. Husband ran out to several pharmacies in search of my new prescriptions, and I climbed the stairs, crawled into bed, and turned on netflix.  My sister kept me company, and then the kids came home!  My parents also came over to help keep the kids under control, but it was so nice to get a few kisses and snuggles, even though I was terrified of a knee or elbow to the belly!  I tried to eat some dinner, took all my pills, and went to bed around 9 pm.

I woke at 1 am feeling awful...unsure of whether it was nausea or pain, I took both pills... but the nausea and discomfort built and built... and then I puked.  a LOT, and holy cow did it hurt my tender belly!  I couldnt find a position to puke in that wasn't agony... I ended up putting the bowl in the bathroom sink so that I didn't have to bend over...I felt like I was dying and almost called an ambulance then and there.  But after 15 minutes or so I felt a little better, crawled into bed, and dozed for an hour or so.  Then the nausea came back... I tried another anti nausea pill... but no good, more puking!

I managed to take tiny sips of water and juice and keep them down, but holy cow was I uncomfortable,  every ounce of energy was focused on not puking, not puking, not puking.  I called my surgeon around 9 am, and he said to just rest and stick to clear liquids in an attempt to stay hydrated.  I tried so hard to rest and drink, I managed to get in a decent amount of juice... but I wasn't peeing, and god I was still so nauseous!!  My husband and sister were convinced I just needed to eat, but my body was telling me no.  I tried to eat a rice cake... i think i managed maybe one bite?  Then one tiny bite of banana took me about 10 minutes.  Eventually, maybe noonish, I broke down and texted my mom "I know you cant really help, but I want my mommy".  She came as soon as she could, took one look at me, called the dr, and within minutes I was in my dads car on the way to the emergency room back down in NYC.

The emergency room was setup very different at Mt. Sinai than in Stamford.  I was met at the desk with a wheelchair, interviewed, and they brought me right to a bed.  I didn't get much attention at first, but I was in a bed, not lying in a lump on the waiting room floor!  The dr had been in touch with the surgical residents so once they were alerted that I had arrived they came down to check on me.  I was still struggling not to vomit the juice (I wasn't full out puking but it was coming up fairly often), but the nurses quickly got me an IV and some anti-nausea medicine which helped immensely.  My bloodwork showed that I was severely dehydrated, and they were concerned that I might have a bowel obstruction.... already.  Once the nausea backed off and I had a bag of fluid in me, we decided to try for a CT scan to see what was going on, and they also wanted to try putting a catheter (I think they called it a foley?) into my ileostomy. The catheter was weird, basically I watched them push a flexible tube (and even a finger at one point...) into my stomach!  Then we left it there for a while.  it helped, we think some of the problem was a pressure buildup because of swelling and my tight abdominal muscles (the downside of having good abs?).  It felt very weird though!  The CT scan showed that my small intestine had "gone to sleep".  Apparently this happens fairly often after the trauma of major surgery, but it usually happens a little sooner.  All of that juice that I was trying to hydrate myself with was just sitting in my stomach, doing nobody any good!  The solution was to put a tube up my nose and suck everything out of my stomach until my intestines decided to wake up again....

The nose tube was the worst experience of my entire life.  I can't imagine anything more traumatic, except maybe watching my children suffer some kind of horrific trauma.  My poor parents!  Luckily by the time they put the tube up my nose my father had gone home to rest (my husband was with me), because I was that crazy person screaming in the emergency room.  I want to throw up right now just remembering it, it was so awful, worse than childbirth.  At least with childbirth you know it will be over soon!  Several factors contributed to its awfulness:

1. They told me it wouldnt hurt, that some people have ear pain or a sore throat.
2. No numbing medication first, just shoved it right in there.
3. The hose was clearly too big for my nose. 
4. I have sinus trouble in general.  

Apparently it was very successful and lots of stuff came out, but I just died inside to the point where the dr finally pulled it out for me (they had planned to leave it in for a few days...) and I sobbed for like an hour straight.  It was SO AWFUL.  They were kind of mad because they intended to leave it in for a very long time... but I couldn't deal. The dr went home and left the resident with instructions to try again with a smaller tube.  Luckily for me, the resident kind of wussed out and nobody tried again until the next morning, when hell returned.  At least I got a break?  The 2nd time they did use a slightly smaller tube and got me some chloroseptic spray for the throat pain (everytime you swallow you scrape the tube and gag), and they gave me some xanax and morphine.  Still nothing to numb my nose though! The next 24 hours are a blur.... drooling, crying without crying because actually crying hurt to much... constant pain somewhere between a brain freeze, water up my nose, a sinus headache, and a dry socket (sometimes after wisdom tooth surgery the blood clots falls out and your jawbone is exposed to air... very unique pain).  Again, the dr took pity on me and pulled the tube out sooner than planned, thank god.  I cried some more, but life was instantly better.  I was starving, but no more tube in my nose!!!

A picture of me with 2nd nose tube of death... I don't really have any concept of time while it was in, I think I checked face book at some point and took this photo, but the memory has a vagueness to it like a bad dream

Since the tube came out I've been cautiously consuming liquids, starting with just a few sips of juice, then a little broth at the next meal... a little jello yesterday... and this morning they let me try a pancake!! I'm much less bloated and things are starting to come out of me again, and most importantly - I'm starting to feel like myself again!  I can smile, joke, and be optimistic!  I think I'm over the hump, and holy cow that was a big one!

I might get to go home tomorrow... but I'm certainly not rushing out the door... they say that this should be just a one time thing (until the next time I have surgery), and that now things should stay "awake" and functioning.  Lets hope they're right!!!!