I have a long list of illnesses (see it here). In 1995 when I was 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 fibromyalgia, the most debilitating illness of all. (Read "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Friday, October 26, 2012

Recovery: Week Three

  ostomy = short for colostomy or ileostomy          Stella = the name of my ileostomy stoma  

Back when I had my JP drain removed over a week ago, the doctor sent me home with a tiny piece of tape over the incision and told me to leave it there until it fell off.  Well, the tape stayed on, and I had assumed that it was closing and healing under there this whole time.  Tuesday night my attention was caught by pus oozing out through the tape and getting all over my shirt.  At that point I removed the tape and used a clean paper towel to wipe away the rest of the pus, and I saw a very deep, gaping hole.  It hadn't closed or healed ONE BIT.
The next morning, after it had filled in.

I applied some antibiotic ointment, put a clean bandage on it, and felt concerned.  I worried that since it hadn't closed at all yet, if I left it alone it would eventually heal on its own but would leave a pretty bad scar, so I called my medical center the next morning to see if I needed a stitch or surgical glue or something to close it.  They made an appointment for Friday with the surgeon who had removed the drain to glue the hole closed and told me that it would be fine until then.  However, when I took a look at the incision that morning, I noticed that the hole had already started to fill in - it was no longer a deep, gaping hole but looked more like just an infected wound (see photo).  The air must have finally gotten to it when I removed the tape and allowed it to start healing.  I figured by Friday it would be half healed already and would no longer need the glue.

That morning I had also contacted the surgical center at UCSF that performed my original surgery.  When my surgeon's chief resident called me back, she told me that if there is any pus involved, you never want to close the wound.  It is dirty and needs to be able to drain and heal from the inside.  She said that I had done the right thing and now just need to let it heal on its own.  I emailed her a photo of what it looked like, and she emailed back that yes, she could see it was starting to heal and to just continue applying antibiotic ointment and replacing the bandage.   Pfwew!  Crisis averted.

I will continue to show you all photos of all of my incisions and scars as they continue to heal since that was one thing I wondered about before going in to surgery: what will the scars look like, and how long would it take them to heal?  Right now the other tiny laproscopic scar on my side still looks like a small scab covered with surgical glue.  Both the small incision inside my navel and the larger one above my pubic bone have lost their glue and healed up nicely.  The scarring is already pretty minimal on those two - you can't even see the one in my belly button - but I bought some name-brand scar cream to apply in order to hopefully lessen the appearance of all of my scars even more, especially for my stoma scar after my take-down surgery, which I think will end up being the most visible one.  I will show pics of all of them in another week, one month post-op.

Right around week two, it felt like some of the swelling all around must have gone down overnight.  In fact, I know it did because the next time I changed my bag, Stella had shrunk to a smaller size.  I had to use some adhesive paste to make the flange hole for my bag fit properly.  Everything has been digesting and passing easily, no matter what I eat, and even strong gas has not been painful.  I seem to have left the difficult part of recovery behind and come into the smooth sailing territory.

Time seems to be passing slowly and quickly at the same time.  Days are running together, and sometimes I have to think for a minute to remember what day of the week it is.  I sleep when I'm tired, wake up at my own pace, and feel like I'm eating all the time.  I've gained almost ten pounds in two and a half weeks. Of course, I have allowed this to happen by eating tons of comfort foods and junk foods - I was underweight when I went in for surgery, so I have been indulging myself since then with some guilt-free weight gain.  I figured I deserved it after everything I've been through.  However, now that I've gained some weight back, it's about time to slow that train down and start focusing on health and fitness again.  Even though most fruits and veggies are still off the plate as per doctor's orders, I need to start trying to make my diet as healthy as I can and curb the calorie intake a bit.

I have been keeping up with my daily walks.  I started by going to the end of the block and back for several days, and since then I have been going just a little bit further every day or every other day depending on how I feel.  I've noticed I'm able to go further and be a bit more active during the day if I continue taking my pain pills occasionally, so I've been popping one pill about every eight hours or so.  It sometimes feels like recovery progress is going excruciatingly slow, since it's hard to notice much of a difference from day to day, but that is when I have to take a step back and recognize the big picture.  As I write this, it is exactly three weeks out from my surgery.  The day I woke up in the recovery room three weeks ago, my abdominals had been sliced and diced to the point that I could not even sit up in my bed.  Today I walked over a mile.  That is some good progress if you ask me.

Getting ready for my walk
I have also been slowly adding in some other facets to my daily "workouts," one component at a time.  At this point after I come home from my walk, I do a little bit of small ankle/lower leg work in order to prepare my legs for the day that I can get back into running.  This just consists of walking down the hall and back on first my toes and then my heels, first with toes pointing straight ahead, then outwards, and then inwards, as well as 30-second intervals of balancing on one foot at a time on a stability disc.  Since I am prone to shin-splints and other overuse injuries, I figure it's a good idea to lay some solid groundwork while I can for all those muscles, tendons, and ligaments that have been out of use.  I've also added a very *gentle* abdominal exercise, which is just sitting on a large stability ball and rotating my hips in circles: 10 reps in each direction.  I figure that is a pretty safe one I can do to stretch and gently work those abs to promote healing and blood flow, and I'll add more sets over time.  I follow that with a couple gentle yoga poses (a modified sun salutation to be exact), making sure to be very careful with the cobra pose, which is till very tight and tender.  Instructions from the hospital were to not lift anything heavier than ten pounds, so just today I added in a bicep curl and shoulder press with only ten-pound dumbbells.  I am impatient to go even further with my training, but I don't want to push my body too far too soon.  It is still healing from the surgery, and I can't give it too much to do at once, or I will start going backwards.  However, my muscles all over my body completely disintegrated when I was sick and malnourished, and I want to start promoting some muscle tone again, even if it is starting out small.  After my "workout" (I have to keep the word workout in quotes since for me this is not a real workout), I follow-up with a protein shake to encourage muscle growth.

I will get back into "fighting" shape - I can see it, and I can't wait... It may take a while, and I will probably have to start over again after my next surgery - hopefully not quite back to square one - but it will happen eventually.  I will build that muscular body, and I will run a half-marathon, no matter how long it takes.

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P.S. - My take-down surgery has been scheduled for December 11th!  That's earlier than I thought it would be, and I'm so excited to have it on the books; I only have to live with the ileostomy for another six and a half weeks, and then it's on to my final stage in this whole process!




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Wednesday, October 17, 2012

Bag Change Time!

  ostomy = short for ileostomy or colostomy          Stella = the name of my ileostomy stoma  

Today I did my first at-home ileostomy bag change on my own.  I'd planned on doing it a lot sooner, but it kept getting put off for various reasons.  First because I wanted to wait until I got the JP drain removed so that when I did change my bag, I could take advantage of the opportunity to take a shower with nothing attached to me.  Once I did get the drain removed, the doc said I had to wait until the following evening to shower.  Then that next evening is when I had my really painful gas episode (see previous post), and by the end of it I was totally drained, sore, and drugged up, and I didn't have the energy to attempt a shower and bag change.  So I finally got around to it this morning.  In this post I'm just going to describe the bag change process in detail so that anyone who is expecting (or considering) an ostomy of some sort knows what's involved in the process.

First, you're supposed to change your bag every 4-5 days, which is the most common.  Some people change every three days, and others push it out to once a week.  All are acceptable; it just comes down to personal preference.  The longer you leave your bag on, the more worn it gets, which  increases your chances of leaks and makes emptying and cleaning increasingly more difficult.  Because of the circumstances I described above, it had been eight days since my last bag change.

I chose to do it first thing in the morning, before I ate, so that hopefully Stella would be pretty inactive.  There are other strategies people use sometimes to try to slow the output for the bag change, like stuffing your face with about five marshmallows beforehand, which I guess can bring output to a standstill for a while, but I'll wait to try that another time.  When I peeled off the old bag, which took a little effort since it was adhered quite strongly to my belly, the first thing I noticed was the smell.  This was different than the tolerable "baby diaper" smell I get when I empty my bag several times a day... it was more like something rotten.  It went away quickly, though, as I threw the bag away - making sure to save the clip off of it - and used a soft paper towel to wipe off any waste and goo that was on and around my stoma.  As I peered closely at Stella, I noticed two things that concerned me.

You can see the red, irritated skin here, but
the gap does not appear in the photo.
First, there was a very small area of skin along the outer edge of Stella that was red and irritated.  (Sorry about the gross pic.)  I knew that this is always a possibility when skin comes into contact with some of the waste output from the stoma, which contains a lot of digestive juices and is very irritating to skin.  Some of Stella's output must have seeped through the edge of the seal a bit.  I'm guessing this may have happened when I waited too long to change my bag; maybe the seal got a bit weak, but there's really no way to tell.  The other thing I noticed was that along that same edge, there was a tiny gap between my skin and the stoma.  I'm really not sure if this is normal, but it looked kinda gross.  I figured I'd try to take a photo of it before covering it back up with another bag and then ask my ostomy nurse about it when we spoke on the phone.

I hopped in the shower and thoroughly enjoyed a nice, long session of warm water, soap, shampoo, shaving cream, etc.  We're told to let soap and water run over the stoma but not to directly wash it.  It felt a little weird and sore as I moved around in the shower under the water, but I was glad to finally be getting the area nice and clean.  Unfortunately, the plan about doing the bag change and shower at an inactive time didn't work out quite as I'd hoped, and Stella spit up all over me in the shower a few times.  Fortunately, it rinses down the drain easily, and I was grateful at that point for my removable shower-head, LOL.  I had laid down a towel on the bathroom floor in case Stella insisted on "performing" while I was bag-less and drying off, but she was pretty quiet for a bit after I got out of the shower.
BAGLESS!

After inspecting Stella some more (I never really get a good look at her since she's always covered by the bag) and taking a couple photos, I proceeded with the rest of the bag-change process.  I'd decided to lay out a towel in front of my full-length mirror so I could kneel and see things from both angles as I worked.  Before my shower I'd laid out the supplies I might need:

  1. a garbage bag
  2. a stack of dry paper towels
  3. a couple of wet paper towels
  4. a new adhesive wafer (a.k.a. flange)
  5. a new bag
  6. the measuring sencil (a peice of tagboard with a bunch of different-sized holes in it)
  7. a tube of adhesive glue
  8. a bottle of adhesive powder
  9. a skin prep protective wipe

The first thing I did was tuck the edge of the garbage bag into my panties so that anything that came out of Stella dropped right into the bag instead of on me and the floor.  I was glad I did this, because she continued to be a little active throughout the process - I kept having to use the dry paper towels to wipe up the little dribbles that came out.  Then I used the stencil to measure the size of Stella.  Since stomas continue to unswell and shrink over the first six weeks, it's important to measure each time in order to ensure a proper fit.  If there is a gap between the edge of the adhesive wafer hole and the stoma itself, leaving exposed skin to come into contact with waste inside the bag, the digestive juices will actually start digesting the exposed skin and cause irritation and even open wounds.  I knew that leaving the hospital, Stella was 1 and 1/8 of an inch, so I put that sized stencil hole around her, and it still fit perfectly with no exposed skin - she hadn't shrunk at all yet.  Good - that means my wafers are still the right size.

Next I used the moist paper towel to thoroughly wipe and clean Stella and the skin around her.  I let that air dry for a minute, and then I used the skin prep protective wipe to swab the area of irritated skin.  This just provides a thin layer of protection on the inflamed skin in order to prevent further irritation.  If I'd had no irritation, I wouldn't have needed it.  My ostomy nurse had told me that the adhesive powder was to be used only in case of any open wounds or sores to protect them from the sticky backing of the wafer.  I didn't have an open wound really, but I was concerned about that tiny gap between the skin and the stoma, which was like an open wound.  So I squirted some powder directly on it and blew a little to get rid of any extra powder.  (It does actually "squirt" out of the bottle in a very tiny stream so that you can be quite accurate on small areas.)  This worked well - there was just a good layer of powder left sticking to the gap.

I unwrapped the new wafer, taking off the first protective backing.  At this point, if I had been having any problems with leakage, then I could have used the tube of adhesive glue to squirt a tiny ring of glue around the inside edge of the back of the hole on the wafer before I placed it on me to create a stronger seal.  Since I think that little irritated skin was a fluke from going too long between changes, I decided not to use the glue this time.  I carefully placed the hole of the wafer around my stoma, making sure there was no exposed skin, and I pressed the adhesive ring into place on all sides.  At this point if there WAS exposed skin (wafer fits aren't always perfect), then I would have made sure that the hole was butted up against the bottom of my stoma so that the exposed skin was along the top edge, and then I could dab some of the adhesive glue on the exposed part since it also can act as a barrier for this purpose.  But again, I didn't need it.  So I took the new bag and snapped it into place by pressing around all the edges - kind of like a tough ziplock.  I placed my old clip at the end of the bag to seal it off in case Stella started spewing.  Then I took the second strip of protective backing off of the thin, flexible layer of tape-like adhesive that surrounds the firm adhesive ring on the wafer, and pressed it firmly into place.

There - all done!   I checked out my handiwork and noticed that the corner of the flexible adhesive "tape" is almost going into my belly button, so I made a mental note to pay attention to the placement of that next time, maybe angling it a little differently, but other than that, I was happy with the results.  I cleaned up my supplies and mentally patted myself on the back. I think the process will get a lot quicker over time and within a couple more changes, I'll be an old pro at it.




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POST SCRIPT - (11/28/12) Additions/changes to the process after a little more practice:
  • I now sometimes have a hair dryer out to help air dry the skin around the stoma in between steps.  Use it on cool/low and from far away in order to not accidentally burn your stoma.
  • I also always use a mini alcohol prep swab to help get the adhesive tape from the old bag off of my skin without hurting or causing more irritation.  You gently pull the tape up with one hand and use the swab to sort of "wipe" your skin off of the tape with the other.  It works great.  I happened to have a bunch of swabs left over from my brief stint with Humira (self-injections), but I'm sure you could buy a box of them at your local pharmacy.
  • As my stoma was shrinking and changing sizes, I switched to moldable wafers, which start small but can be folded back to fit most stoma sizes, which is great when you have a changing stoma or if you are in between sizes.  
  • During the second half of my recovery, I found that whatever I used (pre-cut, moldable, barrier paste, stoma powder), I would end up with output seeping under the edge of my wafer, which causes ulceration (open sores) around my stoma.  I eventually figured out that this is because in the beginning my stoma was so swollen that it never retracted, but now that it wiggles around and retracts flat against my tummy so often (common with loop ileostomies), this action breaks the seal between the stoma and wafer. 
Eakin Seals are moldable and can
fit any stoma size.
  • What I have found to work wonders at really sticking in place and keeping a tight seal even with my finicky stoma is an Eakin Seal.  Within two bag changes, my peristomal ulceration (open sores around the stoma) from output seeping under the wafer had disappeared completely.  
  • I have experimented with different ways to slow/stop output for bag changes.  Applesauce didn't work AT ALL.  Marshmallows only gave me a pretty unpredictable twenty-minute window.  The best one was peanut butter.  I have one or two toaster waffles loaded with peanut butter, and within a half-hour output stops altogether for about two hours.  (I only had two drop-sized "blurps" of output during that two-hour span.)  Wonderful.
  • I do my bag changes standing at the bathroom counter now, with the trash back sitting in the sink and my supplies laid out around it.  If Stella is really spitting up a lot, or if I have to walk around the house bagless for any reason (e.g. to get something I need from the closet) I will still tuck the trash bag into my undies (or just hold a piece of TP over her).



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Recovery: Week Two

  UC = ulcerative colitis     GI = gastrointerologist     ostomy = short for ileostomy or colostomy     ostomate = a person with an ostomy  

On Saturday the 13th, nine days after my surgery, I had my first not-so-stellar episode with Stella the Stoma.  I've read that painful gas is very common during the first weeks after an ileosotmy because gas is more prevalent as well as more difficult to pass when the intestine, abdominal wall, and stoma are still swollen from surgery.  Well, I'd been testing the waters - cautiously at first but then pretty heavily - with the types and amounts of foods I'd been eating and hadn't had a problem yet.  This particular evening I had a large dinner (ate a little too much) and followed it with several dark chocolate Ghirardelli squares.  I'd had all these foods before with no problem, but I think that following such a big meal with chocolate (which stimulates the G.I. tract) just put my tummy under a little too much stress.  Or maybe it was all the butter I had on my sourdough bread (I heard too much fat/oil can also cause gas).  Or maybe there was no reason or trigger whatsoever; it just happens sometimes.

Whatever the cause, over the course of the couple hours following dinner, I felt the building pressure and discomfort in my tummy, slowly growing more painful, and then the pain was at it's peak for another couple hours after that.  I tried popping an extra pain pill, but that did absolutely nothing for me.  Here are the strategies I used that did seem to help: gently rubbing my belly (in between the incisions), applying an instant heat pad, getting up and slowly walking around, swaying side-to-side, changing positions, bringing my knees up to my chest, drinking hot peppermint tea, and laying on my left side.  All these seem to either help get things ever-so-slowly moving through and/or relax my stomach muscles in order to allow the gas to pass more easily.  I apologized to Stella as I tried to soothe her, assuring her I would be more careful in the future.  I could hear/feel her passing little "burps" here and there, and eventually the pain slowly subsided.  Since then I have bought a reusable electric heating pad as well as a large box of Gas-X, which comes highly recommended on the ostomy boards for helping with this painful issue.  I actually did indeed continue to eat plenty of junk food after that with no apparent problems.

Four days later, I had another episode.  I had done nothing to instigate it this time - just had eaten a chicken and cheese burrito, which I'd had plenty of times before.  This time it was much worse than the one on Saturday, though.  The previous pain had just been all-over pressure and discomfort.  This time it was localized, stabbing pain, mostly right behind my stoma, and especially whenever the gas bubbles tried to move or pass through.  I popped some Gas-X and an extra pain pill again, but that didn't seem to do anything.  In the beginning I tried the strategies I'd used before: moving, walking, rubbing, etc., but soon enough the pain became so intense that once I got in a specific position, I literally couldn't move.  If I tried moving even a smidgen, I would scream in pain and had to stop.  At one point I was on the floor curled in a fetal position on my left side for quite a while, but I eventually (through a lot of intense effort and pain) got into a position on the couch where I could use the heating pad, which seemed to help a bit.  But even then any time the gas bubbles would move I would still cry out in pain (a LOT), clutch the pillow, arch my back, and have to start breathing like a woman in labor.  At one point there were even some tears involved.  Eventually, after a couple hours, it passed, but this was one of the most painful things I've ever been through.  Even after the gas pains died down, the area around and behind my stoma remained quite sore for the rest of the night and even into the next morning.  I knew that it was just gas, and I know from doctors and talking with lots of other ostomates online that these type of episodes always go away after the first few weeks, so I wasn't scared or worried - just trying to make it through.  It's been almost two weeks since my surgery, so I'm crossing my fingers that I don't have any more of these episodes before that three-week period is up.

A pic of the JP drain from when
I was still in the hospital.
On Monday the 15th, eleven days after surgery and six days after my discharge from the hospital, I finally got the surgical drainage tube (called a JP drain) removed from my belly.  By this time it had gotten enough wear and tear and tugging (getting caught up in the bed sheets and whatnot), that the little incision it came out of had started to get a bit irritated.  I can't tell you how much I was looking forward to getting this thing removed - it was tedious and frustrating to have to worry about not getting it caught up on something every time I moved, and it was starting to hurt when it did catch on stuff.  All around it was just a royal pain in the butt.  I went in to my local medical center, and my G.I. had one of the surgeons there remove it.  After he snipped the stitch, swabbed the little bit of pus that came out, and cut the tubing, he told me to take a deep breath as he swiftly pulled the whole thing out.... and holy shit, that thing was big!  I'd had no idea how deep that drainage tube was buried in my belly.  When I saw and felt him pull it out, I almost felt like I would pass out.

This is what mine looked like,
except the tubing was a lot longer.
It went about eight inches into my abdomen, and the last several inches was a thicker white plastic sort of vacuum filter thing.  It wasn't exactly painful, but all that movement in my surgical site was definitely extremely uncomfortable, and I had to sit there and take a few deep breaths and recover a bit after he pulled it.  No wonder my abdomen felt all weird every time I moved around, with that much hardware in it!  For the rest of the afternoon, I could feel the empty trail through my abs where the drain had been, and it was all sore every time I moved.  By that evening, though, I had taken my pain meds (which I was not on that morning since I needed to drive), rested a bit, and was feeling much better.  It is such a relief to not have to worry about that thing hanging out of my belly anymore!  Now I will actually be able to move around, go to the bathroom, shower and stuff with a lot more ease.

Other than these "highlights," life in recovery has been pretty uneventful.  I am still getting a great amount of joy from eating whatever food I like and am remaining positive and confident about everything, just enjoying and appreciating this time to rest and recover at my own pace.  I spend a lot of time relaxing in bed, watching TV, cruising around online, chatting/texting with friends and relatives, and taking naps whenever I feel the need.  I do get up quite often throughout the day to get food, go to the bathroom, sit in the front room to chat with my roomie, clean up a bit, feed the dog, or just stretch and take a walk around the house, but before long I get pretty wiped and feel the need to return to bed.

Two weeks post-op: largest incision healing beautifully.
My incisions seem to be healing up beautifully, and I'm really happy with how they're looking.  I think the leftover scarring is going to be very minimal.  The tiny stitches have dissolved from the larger incision near my pubic bone, and the surgical glue has mostly peeled off of that one by now, leaving just a small pink and white line and a couple of tiny scabs where it's continuing to heal.  The smaller laproscopic holes (to one side and in my belly button) just look like little healing scabs still covered in surgical glue.

And my other small incision from which the JP drain was just removed a couple days ago is still covered with the tiny pieces of tape that the doc put there when he removed the drain.  I'm hoping it will heal as nicely as the others, but since it got a bit irritated from the drain and then didn't get any surgical glue to seal it, I have a feeling the resulting scar will be a bit more visible than the others.  I guess time will tell.

Progress during the first week after surgery was so fast that now week two seems to have slowed down and plateaued a bit.  I'm not noticing much of a difference - if any at all - between the days anymore.  My abdomen is still pretty sore and tender when I move around, and I'm still tired a lot.  I think maybe I need to start making more of an active effort to push my recovery along: start doing specific stretches and going on walks outside in order to slowly increase frequency and distance.  Maybe I'll start by setting some simple goals in order to give myself something to work towards.  Here we go -- Goal #1: Put shoes on and walk to the end of the block (it's a long block) and back once a day from now until the end of the week (Sunday), at which point I will start to increase things as long as I'm feeling okay.

Eventually - far enough down the road - this will turn into training for a half-marathon again, but for now... we'll start with a single step.



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Saturday, October 13, 2012

Going Home

  UC = ulcerative colitis          Stella = the name of my stoma          ostomate = a person with an ostomy  
  ostomy an artificial opening for the elimination of bodily wastes (includes ileostomy, colostomy, urostomy, jejunostomy, etc.)  

The day before discharge (Monday), they made sure I was "trained" in how to take care of myself.  First they had a nutritionist stop by to talk to me about what foods I can and cannot eat as I'm healing.  For the first few weeks there is still a lot of swelling inside the abdomen, the abdominal wall/incision areas, and the stoma site, and so the goal is to avoid anything that could lead to a blockage.  This includes anything difficult to break down and digest: raw fruits, veggies, nuts, seeds, whole grains, or anything with a visible husk, grain or membrane.  Eating slowly, chewing thoroughly, and drinking lots of water is key.  Approved foods basically consist of all my comfort foods (which I rarely allow myself to eat for both UC reasons and health/fitness reasons): white breads, pastas, potatoes, cheese/dairy, ground meats/fish, eggs, casseroles, soups, etc.  Fruits have to be blended or processed, and veggies have to be chopped as tiny as possible and cooked to death so they are pretty much mush.
Photo op with Stella and the day nurse who
helped me with my first bag change. 

They also had an ostomy nurse stop by to train me on how to change and maintain my ostomy bag.  She walked me through it, giving me pointers and advice, and watched as I practiced.  She sent me home with spare bags and a kit of supplies I might find helpful, and she ordered my first set of supplies to be delivered to my house.  The nurses also gave me pamphlets and booklets on post-op care and living with an ileostomy.  They left me with phone numbers of who to call if I had questions and gave me a packet of paperwork describing everything that had been done to me at the hospital, including written instructions for following up at home with medications and diet, etc.

Dressed and ready to go home.
On Tuesday - five days after my surgery - they discharged me, and by that afternoon I was resting comfortably at home.  After my parents got me settled in bed, they went to pick up my prescriptions from the pharmacy and brought me back a small burger, fries, and shake.  Now, a lot of these types junk foods are actually "approved" by the nurses and doctors after discharge (as long as you avoid pesky vegetables) since they offer little to no risk of blockage, but they are typically warned against by other ostomates so soon after surgery.

From talking to people in online support groups and forums, I found that other people who have gone through this surgery will tell you to avoid things like fast food and pizza during the first couple weeks, recommending a more soft and boring diet until you heal up a bit.  I did plan to be a bit reserved at first, but figured as long as I was cautious and careful and tried only small amounts of things at first to see how I handle it before proceeding, then I would be okay.

So I ate my burger and fries tentatively and slowly, chewing well, sipping lots of water, and taking breaks.  It tasted great, but I was only able to eat about half of it before I got full and had to take a nap.  (Digesting is hard work!)  At each meal since then I have gotten a little bolder, eaten a little bit more at a time, and eaten a little bit faster as I test the waters.  Stella the Stoma and I are learning to trust each other, and so far she has taken everything I've thrown at her like a champ!  I am now eight days post-op and am still careful to chew thoroughly, not eat too fast, and to drink lots of water, but I am pretty much eating full meals now, no problem.  Since my discharge I have had burger, fries, shake, pizza, burrito, cheesy casserole, bagel & cream cheese, chocolates, cookies, brownies, jelly beans, and more with absolutely no problems!  Eating is starting to become fun and exciting again.

Over the last few days at home, things have continued to progress very smoothly.  I've kept up with a regular schedule for my pain meds and have been really quite comfortable, and I have been learning to use my new equipment with no difficulties.  My ostomy output is still quite liquidy and frequent, with lots of gas, but docs say it should thicken up and slow down over the next few weeks as my small intestine learns to adapt and absorb more water, and gas should also die down quite a bit.  Tomorrow morning I will do my first at-home bag change on my own.  I have noticed a bit of reddish, yellowish drainage from my J-pouch a few times as I sit to go to the bathroom, but the doctors say this is normal - I think it's just extra fluid build-up from the surgery draining out the same way my surgical site is draining from the tube in my tummy.  I have been spending a lot of time resting in bed but also try to get up and move around the house often, since it promotes healing.

Before my parents left they went grocery shopping for me and stocked my freezer full of home-cooked meals that I can live on for the next month, so I have felt quite spoiled on the food front since I've been home and eating all kinds of things I haven't been able to eat in a very long time.  Now that I'm eating all this food and am actually able to absorb it, I'll start putting the weight back on quickly and will have to be careful not to gain too much!

Speaking of, I suppose I should include how my weight has fluxuated through all this.  On my 5'7" frame, before my last bout of intense UC, when I was quite fit and pretty muscular, I weighed between 140-145, which is a very healthy weight for me.  In the couple months leading up to my surgery I got sicker and sicker, and by the day before I did my bowel prep for surgery, I weighed 130, which is quite low for my frame but not outlandish.  While I was in the hospital they weighed me a couple times, and I was so swollen and had retained so much water that I was back up to 144...  although I was also still hooked up to equipment that could have affected the scale.  Once I was home and leveled out my hydration levels, I weighed in at around 123 pounds, which is where I'm at right now.  So just between the bowel prep, the surgery itself, the lack of food those couple days post-op, I seem to have lost about seven pounds altogether.  Right now I look a little emaciated, but with the type of diet I'm restricted to over the next couple months and not being able to exercise at all until I heal up, I have a feeling I'm going to gain weight very quickly.

So that's pretty much it up until this point.  I will continue to keep you all posted on how I do weeks and months down the road as I continue to recover from surgery number one and prepare for surgery number two (the take-down).  Of course there have been a couple small bumps here and there, but overall I could not have been more pleased with the way everything has turned out.  The surgery went amazingly well; I am making steady progress in my recovery, and I feel a little more like myself every day.  I can't wait to heal up and regain my strength enough to start working out and being physically active again.  I know that I still have a long road ahead of me, but I am very optimistic about my future.

8 days post-op: yesterday morning right before my parents left... Still in my PJ's and 
morning hair, enjoying a cup of coffee with my bagel and cream cheese.   





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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"


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Friday, October 12, 2012

Surgery!

  UC = ulcerative colitis      ostomy = short for ileostomy or colostomy  

In this post I am going to give a very long and very detailed account of my surgery, from beginning to end.  I will cover as many facts and points as possible so that anyone considering this procedure can know exactly what to expect.   During the times where I was unconscious or too drugged up and out of it to remember much, I had my mother take notes on everything that happened since she was by my side the entire time, so I have been able to fill in the whole story as much as possible.

The day before my surgery, I had to do a bowel prep to clear out my intestines.  I've done these plenty of times before (required for every colonoscopy), and there are several types.  This one consisted of instructions for nothing but clear liquids all day and a laxative pill followed by about a half-gallon of laxative drink, taken eight ounces at a time, every ten minutes.  I ended up drinking the glasses every fifteen minutes just because the liquid was too difficult to get down that quickly.  It's a lot of fluid to chug at once, and it tastes pretty bad as it's throwing your GI tract on a roller-coaster ride, so if I'd taken it any faster, I don't think it would have stayed down.  I started around 3:00 PM, and it took a few hours to get me all cleared out.  Because I was so sick with my UC and hadn't eaten much in the couple days prior, I was pretty weak by the time my parents showed up that evening.  Of course I was instructed not to eat or drink anything past midnight before my surgery, even water, so by the next morning I was suffering from even more severe starvation, dehydration, and blood loss than usual and I was still having bad stomach pains and cramping from my UC.  I was pretty much a miserable wreck.

My parents drove me to the UCSF Medical Center on Thursday, October 4th, 2012.  When I arrived, I
Laying on my hospital bag
 in the back seat of the car 
on my way to UCSF.
was extremely tired, thirsty, and in a lot of pain.  We checked in around 8:30 AM, and after I signed a couple forms and showed my I.D. and insurance card, they had me go to a pre-op room and change into a hospital gown, booties, and a hair cover and lay down on a gurney.  They hooked me up to an IV (just a saline drip) and had me fill out some more paperwork regarding medical history, medications, recent health, and current symptoms.  I also signed some release forms and verified that I know exactly what type of procedure I was there for (total proctocolectomy with ileoanal reservoir construction and temporary diverting loop ileostomy - it's a mouthful).   The surgeon's chief medical resident came in to introduce herself and explain that she would be helping with the surgery and answer any questions I might have.  The anesthesiologist and his team came in to also introduce themselves and ask a few more basic questions as well as answer any further questions I might have about drugs, anesthesia, and pain management for after the surgery.  My parents were there the whole time offering support, asking appropriate questions of the nurses and doctors, and taking notes.  Throughout all of this pre-op stuff, I was in a lot of pain just from the UC, and I was just waiting for them to give me some sort of pain-killer or sedative relieve my misery.

This is me putting on a smile while in
incredible pain from my UC.  I was, however,
confident about going into surgery.
My surgeon's previous procedure ran a late, so we had to wait for about two hours before she and her assistant eventually came in to talk to me at 11:45.  Up until this point, I did not know whether they would plan to construct the J-pouch during the first surgery.  It was all dependent on the results of the CT enterogroaphy of my small intestine (to rule out Crohn's as much as possible), which I hadn't heard back about yet, and on my blood tests to show whether I was healthy enough to actually heal the J-pouch once it was created.  She reported that both tests looked great, and so they would go ahead and construct the J-pouch today as long as she didn't see anything unexpected and suspicious while she was in there.  She said once she started the procedure, it would take about four hours, which surprised me because I'd heard this surgery takes more like seven or eight.

At 11:55 one of the nurses finally came in and administered some Versed (a sedative) to make me more comfortable.  At noon my mother gave me a kiss and my father gave my hand a squeeze as the nurses wheeled me from pre-op down the hall and into the operating room.  They helped me move from the gurney onto the operating table, propping my head on a yellow block.  As soon as I was on the table, they all swooped in to prep me all at once, but I wasn't nervous or scared, partially because of the sedative they had given me.  One person was inserting a second IV into my other arm while someone else was wrapping air compression wraps around each of my legs that would inflate on and off every minute to promote circulation and prevent blood clots during and after surgery.   Another person strapped a belt around my waist to hold me down on the table (making some joke about how surgery doesn't go so well when the patient falls off the table), while someone else put a gas mask over my face.   After that, the amnesiac effects of the Versed must have kicked in, because everything went blank.

At 5:15 the surgeon came out to the waiting room to speak to my parents.  She told them that the surgery went well.  She said that my whole colon and rectum were very sick, and it was clearly a good choice to remove it.  Everything had gone smoothly during the surgery, and they had formed the J-pouch.  She told my parents I would be in recovery for about an hour and a half, at which point they could meet me up in my room on the fifth floor.  Right after that, my dad saw the surgery door open and my parents saw the nurses wheeling me to the recovery area.  Apparently I was talking to them and they were reassuring me.  When my parents went down to get some food from the cafeteria, they ran into the surgeon's assistant.   She told my parents that right after the surgery I kept crossing my legs and they kept having to tell me to uncross them, which made my mom laugh because she remembered a remark I'd made the day before that if I could feel a catheter after surgery I would know that I had gotten a J-pouch.  (They wouldn't have left the catheter in afterwards if the surgery was a simple colectomy/end-ileostomy and no J-pouch).   Dad asked if I would remember any of it, and she said no because I kept asking the same question repeatedly, but that that was normal.

------------------------------

The next thing I knew, I was waking up groggily in the post-op room a little after six o' clock (yes, I actually looked at the clock and noticed what time it was), almost as if I was waking up from a nap.

Before I continue, I need to explain that when my UC was as bad as it was, I had this constant, hard-to-describe, uncomfortable, sick feeling in my lower abdomen all the time - every minute of every day.  It was the disease, at work and bleeding at all times, and it didn't feel good.  I was so incredibly sick of that feeling by the time I went in for surgery that I was really looking forward to a colectomy just to get rid of that diseased feeling in my tummy.  Well the first thing I noticed when I woke up from surgery was that the disease was gone, and that feeling was such a relief that I didn't really care much about anything else.

As I came to, I could feel the compression wraps still working on my legs and felt a little sore around my abdomen but not really in pain.  My mouth was incredibly dry, and my throat was kind of sore and scratchy from the intubation.  I rember asking, "Are we all done already?" and a nurse answering, "Yep, all finished!"  They brought me a sponge swab dipped in a cup of water to wet my mouth, which felt like heaven.  They also showed me how to work the button that would dispense a shot of Dilaudid (narcotic pain-killer) into my IV any time I pushed it (only spaced ten minutes apart)... That pain pump was my best friend for the next couple days!  I knew beforehand that the plan was to keep me in recovery for an hour and a half just to make sure I recovered and woke up okay from the anesthesia.  I was in and out of it for the next couple hours, but they ended up keeping me in there for a lot longer than expected because my catheter was not producing any urine.  They were concerned about my kidney function and kept hooking up more bags of IV fluids.  They also tried flushing the catheter, which basically consists of using a large syringe to push water up into my bladder and then suck it back out to make sure the pathway was clear... not a fun process.

Around 8:00 PM they finally wheeled me up to my room, even though the catheter still had only produced about 30 mL, which is practically nothing.  They were still concerned and would keep a close eye on me while administering more fluids.  They said the next step would be to take the catheter out and insert a different one to make sure the problem was not with the catheter.  I was dreading this because I knew by this point that as long as I was still, I was pretty comfortable, but if anyone touched or put pressure in certain areas on my abdomen (or changed pressure in my surgical site by "flushing" my catheter), I could get these really intense, stabbing, shooting pains through my tummy and surgical site that made me jump back and cry out.  When it happened, it was almost as if someone had touched a bundle of nerves that shot pain out in all directions.  I would do anything to avoid that feeling again.  (Just FYI, the doctors later said this was unusual. If you're considering surgery, know that this is NOT a typical side-effect or sensation.)  But they would give it a little more time and fluids before switching catheters to see if it would pick up soon; maybe I was just REALLY dehydrated.

It was in my room that evening that I got my first good look at what was going on down in my tummy area.  I could hazily see my new stoma through the foggy, clear plastic of the ostomy bag attached to my belly.  It was a bit smaller and lighter pink than I'd expected.  (The color darkened over the next day or so to the red it is now.)  There was also a tiny laproscopic incision above that and off to the side.  There was another matching laproscopic incision inside my belly button.  These two were just sealed with a bit of surgical glue and look like they will pretty much disappear into nothing by the time they heal.  There is a drainage tube coming out of the third laproscopic hole on the other side of my belly; the tube is surrounded by a bandage, and the other end of it is attached to a little plastic bulb where the fluid collects.  Finally there is a very neat, 3-inch incision right above my pubic bone area, mostly covered by the ostomy bag.  I think I can see some tiny sutures there, but it's hard to tell since this incision is also covered in a coating of surgical glue and looks very clean.  Overall I am very pleased by the look of everything.  It appears that scarring will be minimal.

Right then and there I decided to name my stoma Stella.  I liked it mostly for the alliteration ("Stella the Stoma"), but also because Stella means star.  I kind of see her as the star player in my life right now... and the small, bright red dot on my belly is somewhat star-like in my mind.

Welcome to the world, Stella: 10/04/12.


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