Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Saturday, October 13, 2012

Post-Op: Inpatient Care

  UC = ulcerative colitis          ostomy = an artificial opening for the elimination of bodily wastes (includes ileostomy, colostomy, urostomy, jejunostomy, etc.)  

After I was out of surgery and settled in my room, nurses continued coming in every hour or two throughout that evening and night to ask how I was doing, check my vitals, check my catheter, empty the drainage tube coming out of my side, etc.  They were still concerned about lack of urine, so one nurse used an ultrasound machine to look inside my bladder to see if there was even anything in there.  There was a little bit, but it wasn't coming out.  They tried flushing my catheter again and had me re-position myself to see if that could get things going.  Finally around 10:00 PM I started producing a little bit and by midnight I was resting comfortably.  I did not get any solid sleep that night because the compression wraps on my legs were going off every minute, people kept coming in to check on me, and I kept having to wake up to hit the Dilaudid pump, but at least the drugs kept me comfortable and restful.

Since everyone's intestines are wiggling and contracting at all times, working to push food through your gut every minute of every day, in order for the surgeon to be able to operate on this delicate area, they have to shut down the whole GI tract, essentially "putting it to sleep".  It takes a while for a person's guts to "wake back up" after this type of procedure and start working again.  If I was to eat or drink anything during this time, it would not have anywhere to go and would come right back up and out.  So every time the doctors came in to check on me periodically, they kept asking of my stoma was producing gas yet, which would have been the first sign of my intestines "waking up".  In the early morning hours after surgery, Stella finally made a little burp/fart noise, which totally startled me because I could hear it and feel it vibrate on my tummy at the same time.  Intestines do not directly have any nerve endings, but the stoma runs through my abdominal wall and is attached to my outer tummy, which definitely can feel things.  The first many, many times I felt this little "blurt" passing of gas, it startled and amused me, making me jump a little - like when you have your phone on vibrate and forgot that you were holding it between your legs.   This little sensation is a very new and different feeling and definitely takes some getting used to - it's now a week later, and it STILL startles me sometimes.  Anyway, that morning as I peered closely at my new, noisy little friend, I could see her pulsing and moving through the bag.  She was awake.

By that time my catheter had stopped again, and my day nurse, Liz, flushed it again (for the third time), though she was much more gentle that the others, and I hardly felt it.  (Already my favorite nurse!)  Throughout that morning and especially when she had me get up for the first time and walk to the door and back (oh-so-slowly and carefully!), we finally figured out that if I was laying down the catheter would not work, but if I sat or stood up, it would start draining.  So as long as the catheter was in, I had to sit up every couple hours in order to drain it, which was a bit of an ordeal.

Here are the items I could not have done without during my first twenty-four hours out of surgery and were by my bedside at all times:  1) Chapstick/lip-balm, constantly applied since my lips were constantly dried out.  2) The wet sponge-swab, which I would use to wet my mouth frequently (before I could start drinking fluids and before my mouth started producing saliva again -  part of the digestive process that had been "put to sleep"), especially any time I spoke, which dried out my mouth immensely.  3) A mini-bottle of hand sanitizer since I couldn't get up to wash my hands in the sink (and didn't really want to because of the IV); I used the hand-sanitizer any time I prepared to touch my surgical area or eat/drink any food.

I spent most of my time watching Netflix
on my phone, occasionally updating
concerned friends and family on Facebook.
Over the course of the next few days I learned the hospital routine: nurse shift changes at 7:00 AM and PM, and then they would return every few hours to check on me and empty the catheter, the surgical drain, and any ostomy waste.  (They measured and recorded EVERYTHING that came out of me during my entire stay there: urine, waste, and surgical drainage.)    The doctor would then make whatever decisions needed to be made - whether to change the pain meds or advance to the next step in diet - and the nurses would follow up with those directions.  The nurse would also come in three times a day to check my surgical site, check my vital signs and administer heparin (a shot in the side that pinched like a mother and left bruising every time) to prevent blood clots.  9:00 AM and PM is when they would come around to administer other meds: prevacid, my birth control pill, and the round of steroids they had put me on.  Around 6:00 AM every morning a chief resident would come in and ask some basic questions about how my stoma was working, how my pain was, how I was tolerating food, etc.  Then he would return an hour later with "the team" which consisted of a couple of other residents and the medical doctor to do the same thing over again as well as look at my surgical site and poke my belly a bit.  (It is a teaching hospital, so there are residents around throughout all of it, reporting to the doctors and confirming that they are all coming to the same conclusions.  It reminded me a lot of Grey's Anatomy.)  With all the people coming and going, I was kept pretty busy and felt like I was lifting my gown for people all day long!

Speaking of which (on a personal note), the decision I'd made to get a full brazilian wax before the surgery was brilliant.  Between the catheter, the incision near my pubic bone, the adhesive of the ostomy bag, not being able to bathe or even wipe for a few days, etc., I was very glad to be completely hairless down there.  (If you decide to do the same, just remember to do it well before the surgery date so that there is no lingering irritation or tiny infection.)

The morning after surgery (Friday), since my guts had started to wake up, I was approved for a clear liquid diet which would be the first thing to pass my lips since surgery.  I tentatively sipped some water and later was brought some soup broth, apple juice, and jello for breakfast, which I drank VERY slowly, a couple sips at a time.  I was basically brought the same thing again for both lunch and dinner.

Around 9:00 that evening (coincidentally right when I was in the middle of a video chat session with my twin sister, giving her a "tour" of my tummy, LOL) we discovered a bit of brown stuff coming out of the stoma.  Stella had started producing waste, so no more clean, clear ostomy bag!  Since everything was passing through just fine, they approved me for a "full liquid" diet the following morning (Saturday), which included pudding, yogurt, and a slightly thicker soup that was actually quite tasty.  Since my gastrointestinal tract had been waking up so slowly through all this, I really wasn't very hungry, but the food tasted good when I ate it.  I was still careful to eat very slowly with lots of breaks and to sip plenty of water in between.
"full liquid" diet
Since everything seemed to be going smoothly, that Saturday evening (the end of day two), for dinner they brought me my first solid food: chicken-noodle soup, saltines, plain chicken, plain noodles, and pureed peas.  The soup was great, but the solid chicken (or maybe it was the peas) was a bad idea and caused quite a bit of discomfort for a few hours afterwards.  I could tell my body was just having a difficult time digesting it.  The rest of my stay I continued to eat very gentle (and boring) solid foods like more soup, cream of wheat, boiled egg, steamed fish, cooked carrots, bread rolls, etc.

They had me get up and walk three times a day, which was an ordeal because I was attached to so much
Walk, walk, walk!
stuff.  First they had to take off the leg-compression wraps, then get my catheter off the bed hook and bring it around to hang on my IV cart, then unplug my monitors from the wall, pin my drainage tube to my gown, make sure my IV wasn't tangled in the bedclothes... but each day this got a little easier as these attachments started to disappear.  The first time, like I said, I only made it to the door and back and with a nurse on one side of me and my mom on the other.  Later that afternoon I made it half-way down the hall and back, leaning on the IV stand with one hand and on my mom's arm with the other, and then I sat in the chair for about 40 minutes.  They encouraged me to change positions as much as I was able to in order to help with circulation and proper breathing, since laying in the same position in the bed for days can cause issues with these things.  That first evening I made it to the end of the hall and back with only my IV stand, and by the next day I was walking a couple laps around the floor each time.

Over the first couple of days those shooting pains in my tummy I previously described when someone would touch certain areas died down and eventually disappeared.  The doctors were a bit perplexed by them since they weren't "normal", but I wasn't too concerned - my tummy had just undergone major trauma and had a lot of adjusting to do.

At some point during day two (Saturday) is when the nurses taught me how to empty my ostomy bag.  Since I still had the catheter in, it was easiest to just do it sitting on the side of the bed.  They would get a little measuring bin to hold between my legs while I carefully took off the clip, folded the edge of the bag over on itself (to create a little clean area to grab the inside of with my finger - almost like rolling up a shirt sleeve or cuffing a pant-leg), and squirt the contents out into the bin.  Then I'd use a couple of towelettes or baby wipes to clean of the outer edges and as far inside the bag as I can reach with my towelette, unroll the end of the bag, and replace the clip.  Pretty easy all around.

By the end of day two since I was tolerating food, they also disconnected me from the Dilaudid pump (it was a sad farewell!) and switched me to oral pain-killers (Norco).  It took a while to find a good timing and amount for these pills.  They ended up doubling my dose from the one they started with since I was in such discomfort and pain off and on.  Also, if I took two every six hours, I would roller-coaster between crazy drug-induced high versus pain and discomfort as they started to wear off, so taking one every three hours worked out a lot better.  (Of course I wasn't administering them myself, but I would talk to the nurses and doctors who would then adjust things.)  I found that the biggest thing that influenced my pain was the pressure inside my abdomen.  At some points, over the course of a few hours, the pressure would start to build up: urine in the bladder, air and/or waste in the intestine, and fluids in the surgical site.  When this kind of pressure would build up, it could cause a tremendous amount of pain and discomfort.  I figured out that if I notice this starting to happen, I could use some strategies to get things moving and relieve the pressure: heat pad on the tummy, lightly rubbing and pressing my belly in between the incision areas, and changing positions or getting up and moving around/walking.  If I did all three of these things, usually by the time I was getting back in bed everything would be draining and I would have to have the nurse come in to help empty it all: the catheter, the surgical drain, and the ostomy bag.

Here my feet are very swollen - they are usually quite slender 
and bony.  You can see the leg compressors still attached.
I think sometime during day three (Sunday) is when they stopped using the leg compressors (which had gotten very annoying by that point) and disconnected the IV fluids.  I was well-hydrated and drinking water on my own, so I no longer needed it.  When I first came out of surgery I was so dehydrated (from the disease, the bowel prep, and not being able to eat/drink anything before surgery) that it took several bags of fluids before I even started producing urine... and then for the next couple days my body started retaining water like crazy.  Everything was swollen - my fingers looked like sausages and my feet were puffy like marshmallows.  It took a couple more days for all the swelling to go down, and by the time I was discharged things were pretty much back to normal.

The catheter stayed in for three days, and at exactly 12:00 AM on Monday, October 8th, they took it out.  A couple hours leading up to this I was feeling a lot of pain and pressure since it was having trouble draining again.  The nurse said that the pain I was experiencing could be the full bladder pressing up against the inside sutures of the new J-pouch.  She had me sit up and moved the tube around a little down below my bed to work the siphon like a vacuum to drain the rest of the fluid out, and the pressure subsided.  Once they took the catheter out, it took a while for that discomfort to completely go away, but I was very relieved once it did.  (The removal of the catheter was my favorite step in the whole ordeal, mostly because it never worked quite right.  On my next surgery, though, the catheter worked just fine, and I could barely tell it was there.)  However, she said that sometimes people have trouble peeing on their own again after having a catheter in for a few days and that I'd better keep drinking fluids so that I would pee soon, because if I didn't urinate by 6:00, they were putting it back in.  Yikes!!  Fortunately I had no problem in that area and went to the bathroom frequently throughout the rest of my stay.

So by Monday (day four) I was pretty much detached from everything, was getting around well on my own,
was eating and digesting solid food, and had my pain pretty well-managed via oral meds.  The only thing left on me was my ostomy bag, which I will live with for the next three months, and the surgical drain, which they ended up sending me home with.  That morning they taught me how to drain it myself and measure the output.  It was still producing between 400 and 500 mLs of fluid a day, which is a little more than normal.  They sent a sample off to the lab to make sure it was all normal stuff coming out of me and said that when the drainage went down to somewhere between 50-70 mL per day then I could make an appointment to have it removed.  This could take a week or more.

By the end of Monday, I was confident that everything was okay and was pretty much ready to go home.  I was done; I had survived.

Through everything leading up to this surgery, I have approached it all with a pretty matter-of-fact attitude: make and go to the appointments, file the paperwork, make the phone calls, do the research, find out what to expect, talk to people who have done it, bring my list of questions to the surgeon, take notes, etc.  Towards the end of my illness, I was in such constant and severe pain and misery that I was counting down the days until surgery.  However, I always expected that at some point - whether it was as they wheeled me off to the operating room or when I got the first look at my new stoma - that I would need to have a little "freak out" moment where I say to myself something like, Oh my god, this is really happening!  What the hell am I doing??  I can't believe I'm really going through with this - my life will be different forever! during which time I would release all my anxiety, fear, and sadness over the loss of a pretty big part of me.  What surprised me the most about everything is that this moment never came.  I have felt nothing but confidence and positivity every step of the way.  I know that when I came into this, I was slowly dying from my disease; it was quite literally killing me.  I had tried every established treatment out there, and none of them had worked.  If I didn't go through with this, then my health and what was left of my tattered life would have continued deteriorating, quickly spiraling out of control until I ended up in the hospital with an emergency colectomy anyway.  Even the most difficult day of recovery was still better than what I was suffering from during the weeks leading up to surgery.  I know I made the right decision, and I know that regardless of possible complications, my life can only be better because of it.

These arrived a couple days after my surgery.
The caption read, "Heal fast Ronnie & Stella!  I love you!
So sorry I'm not there with you right now.
XOXO, Your Sister"

Feel free to leave reactions and comments below...
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  1. penny471 from Healing WellOctober 14, 2012 at 12:18 AM

    Wow...I just want to say congratulations :) I'm so happy I was able to read this post as I'm scheduled for surgery in 3 weeks time and am freaking out. I liked the fact that you posted photos of what it really looks like (stoma, etc.). Reality hit me in the face but it's so nice to be able to know what the steps are actually like and how it really looks. I also appreciated reading the details. Just want to thank you :) I should do the same after my surgery to help those in need.

    1. Yeah, I know that reading other blogs like this one really helped reduce my anxiety going into it. Just knowing exactly what to expect really helped me be more confident about it all... Which is why I decided to do the same for other people as well. :-)

  2. Thanks for sharing, I will bookmark and be back again

    Post Operative Care

  3. I am so glad that I found your blog. I too live in the bay area and am a teacher and am dealing with my first flare. symptoms since aug 2012, severe since May. Finally starting to feel better but I am scheduled for surgery Oct 18, 2013. Its now confusing because i am starting to feel better and question if i should still do the surgery, even though i dont ever want to go through this again. your posts are very helpful. :)

    1. Erica- I totally understand your concern, and you would not believe how common that is. Many j-pouchers started to feel better before their surgeries; it's almost uncanny, as if the colon is trying to save itself or something, LOL. I cannot say what choice is best for your particular situation, but I will remind you of a couple of things:

      1) From all of my years of research and experience, this is a disease that gets worse over the years, not better. Your symptoms might ebb and flow a bit, or you may even go into remission for a period, but chances are your next flare will be just as bad or worse than your last one and even more difficult to get under control. Trust in yourself, and keep in mind that you did not come to this decision lightly in the first place.

      2) Your chances of a quick recovery free of complications and a successful j-pouch construction rely largely on the state of your health going into surgery. If you wait until you are at your sickest, your chances of having complications, having trouble healing, and possibly needing additional surgeries increase. It is actually a good thing that you are getting better as your surgery date approaches.

      How severe was your flare? How far up did the UC reach? In my humble opinion, if it was really bad, and/or if it affected more than half your colon, it's not worth it to put yourself through that again, because you know it's only a matter of time before it comes back. Whatever you do, just make sure you've got yourself a good surgeon. I believe that I have not had a single actual obstruction from day one because I had one of the best... one who knew how to leave minimal scar tissue. I obviously am a little biased because I chose the j-pouch, but only you can know what is best for you. Good luck! Would love for you to come back and let me know how it turns out. :-)


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