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.

Surprise Surgery! Part 2

After an exciting day in the emergency room at Stamford Hospital, I arrived at Mount Sinai Hospital in NYC at around 11 pm by ambulance transfer (fun! but no sirens), waving to my husband through the back window as he followed behind for much of the trip.  Up in my room, various resident doctors came by and everyone agreed that I wouldn't be having any emergency surgery that night, so we tried to get some rest.  The nurses managed to find a recliner for my husband... but he was unable to figure out how to recline it in our shared stupor, so he slept sitting up with his feet sticking out in front of him all night.  Poor guy!  (I figured out how to recline it via secret hidden lever the next day!)

In the morning I was visited by many doctors, and we discussed my options.  The fact that I had a c.diff infection had the potential to change things... it was possible that this latest downturn was all due to that.  AND, having a recurrent c.diff infection is the only thing that currently makes poop transplants (fecal microbiota transplant, or FMT) legal in this country, something I was very interested in trying if my colon could handle it.  It was arranged that the FMT specialist would come see me the next morning (Monday).  In the mean time I had some abdominal x-rays to make sure I hadn't ruptured, but things still looked pretty awful and the general consensus was that surgery was going to be necessary - the damage was too great to get under control with medicines that had failed me so far, and the risk of my colon literally breaking open was pretty high.  So, I spent a day very hungry, waiting for my chance to see a few more doctors on Monday, preparing myself mentally for what would very likely be surgery on Tuesday or Wednesday.

Surprise Surgery! Part 1

Well, what an adventure I am on!

I was feeling pretty great back in April, but throughout May and into early June things started going downhill again.  I continued with the latest infusion therapy medication (Entyvio) and reached almost 6 months on the SCD, but just wasn't seeing the hoped for results.  I emailed my doctor some creative and uber dorky graphs, saying "I think its time to talk".

I am such a dork.

The next day, I felt surprisingly well, and even took the kids to the beach!  Turns out that was a bit of a last hurrah, and boy am I thankful that I was given such a nice afternoon with my kids! (and one last chance to bear my nice flat scar free tummy in an itty bitty yellow polka dot bikini!)