The Adaptation Period

I finally get to change my tummy pick from sad to happy!
(Ipod Shuffle still attached from today's run.)

First off, I have to apologize to my loyal readers that it has been over two months since I've updated my blog.  I have been meaning to publish another post about life with a j-pouch for over a month now, but I honestly have been too busy enjoying life!  I have so many exciting things to share with all of you about what I've been up to since my last post that I'm having a hard time trying to figure out what to talk about first!

As some of you already know by now, doctors and experienced j-pouchers will tell you to hold any complaints or freak-out moments regarding results of the surgery until after the five-month mark.  The reason is that a brand new j-pouch has to go through an adaptation period.  During this time the j-pouch has to learn its new function, which involves a couple of changes.  First of all, since the j-pouch is made from small intestine, who's normal job is to push food through constantly, the j-pouch has to learn that it is the new end point and that it does NOT need to push food through but rather store waste.  Secondly, the small intestine learns to absorb more water in order to pick up the slack of the missing colon.  Thirdly, the j-pouch will grow and expand to fit the needs of its new function.  And finally, it needs to finish healing and re-establish a healthy balance of intestinal flora (healthy bacteria that helps to break down food).  Much of this change happens within the first five months or so, but the j-pouch can continue to adapt and settle in for up to a year or more.  Right now I am about four and a half months out from my takedown, and here is how I am doing on all the main points that future j-pouchers seem to be curious about.

Bowel Schedule & Sleep:

Since my last post, my BM's have become more predictable.  I go probably about five times per day, slightly more if I eat something my j-pouch isn't crazy about, so it typically stays between five and seven.  My biggest complaint about j-pouch life used to be that I woke up one to three times a night to use the bathroom, which disrupts my sleep cycle.  (And when I get up to go, it's not like I can just stumble to the john with the light off, pee, and go back to bed.  Getting fully clean after a j-pouch evacuation requires light and attention, which means I have to wake all the way up, after which it is sometimes difficult to fall back asleep.)  For a few months these nighttime BM's were on a pretty regular schedule: once between 1:00 AM and 2:00 AM and again between 4:00 AM and 5:00 AM, sometimes more if my j-pouch was feeling unruly.  This meant that I never felt quite rested; I couldn't sleep in, and I worried that I would never get a solid night of sleep again.  However, I am proud to announce that over the last couple of weeks that schedule has been slowly stretching out until the last three nights I have actually slept through the night without waking up!  This seems to be my new schedule, now: getting a solid night's sleep.  Wooo-hooo!!!  For those of you who don't know me, this is a HUGE win for me.  I am SO excited about this sleep thing.

Diet:

I mostly eat whatever I want without having to worry much about what will happen to my gut.  However, there are a few things I have to make sure I eat in moderation, or I may end up with extra bathroom trips that night.  I still don't eat too much fiber, but I am very slowly bringing it back in.  I have noticed I can eat cooked veggies without much trouble (soups, stir-frys, etc.) and I can eat small amounts of raw veggies, like the amount that would be on a burger or a small side-salad.  (I did try a large salad right after my last post, and my j-pouch didn't like it, so I went back to avoiding raw veggies for a while.)  My goal is to be able to eat full salads by summer.  I can have small amounts of nuts or seeds as long as I don't overdo it (a handful of nuts, but not two).  I was previously avoiding chocolate since it stimulates the bowel, but I have found just within the last week that my j-pouch now tolerates small amounts of chocolate just fine.  In the past, I have used Imodium before drinking alcohol, but the last time I went out I did not take any, and I had three rum drinks with no ill effects and maybe only one extra bathroom trip that evening.  (I did notice, however, that I got pretty buzzed off those three drinks, letting me know that it was the Imodium that was giving me the sky-high alcohol tolerance I described in my last post.)    Other than that, I have no limitations on what I eat.  I am hoping that the few foods I still moderate will become more tolerable over time until eventually I am eating whatever I want whenever I want.

Work:

I returned to work full time on February 19th, which was just over two months after my takedown.  (I would have been able to go back sooner if I hadn't had so many complications after my second surgery.)  Although I enjoyed being back at work and interacting with students, I have to admit that it was quite exhausting at first.  Before my surgery, I was incredibly ill with UC, and as soon as I healed from surgery one I was back in for surgery two.  So with everything combined, there were about five months during which I spent the majority of my time in bed.  This alone, I believe, contributed hugely to my exhaustion in coming back to work. Teaching is an exhausting job to begin with, and the first couple weeks back from summer break (which is two months long) are usually tiring, so coming back from this was even worse.  However, I slowly built up my strength and endurance, and now I'm teaching energetically all day, just like I was back in my healthy days before all this happened.  I have no bathroom issues while at work.  If I do ever feel the need to go, I can hold it as long as I need to until it's convenient.  I am usually at work from around 8:30 AM until about 4:00 PM, and I usually go once during that time, either at lunch or right after school is out.

Exercise:

Because it took a while to recover from my complications, and then it took a while to adjust to being active and back at work full time, it took me much longer to get back into exercise than I had hoped.  However, a few weeks ago I did start adding some workouts after work, and now I am working out four to five days a week.  I am running two to three times a week, though not very fast or very far (under 2 miles) since I'm dealing with shin splints and feeling that old ankle sprain acting up, but I have learned to start my running practice very slowly before building up and adding mileage.  Consistency and perseverance are what will get me there.  I'm also doing strength-training two or three times a week.  I'm still working on building a foundation all around since I've been out of the game for so long, but I am excited to be back in it full-swing and love feeling that endorphin rush from pushing my body to its limits.  My body seems to be responding pretty quickly now that I'm off all those awful drugs (prednisone, immunosuppressants, etc).  Sometimes the gravity of the bouncing (during a run, for example) or the flexing and exertion of weight-lifting can cause me to feel like I have to go, but again, I can always hold it until the end of my workout, even when I'm working out in my home gym.  I also plan to resume my yoga classes, roller derby sessions, and dance classes in the near future.

Dating and Sex:

Another exciting thing that has happened since my surgery includes advances in my love life.  Once I was off of all drugs and free of post-op complications, I started looking into dating again.  Coincidentally, the first man I went on a date with turned out to be totally amazing, a person I see as my perfect match after so many years of searching for the right one.  We have become quite serious very quickly, and I'm loving every minute of it.  A lot of people (females especially) want to know about sex after j-pouch surgery.  Well, my sex life is amazing, too.  I can assure you that even with a very wild and kinky sex life, everything functions just as it should in every position imaginable.  In the beginning, I would occasionally feel the need to go a few minutes after finishing intercourse, but never during... and I haven't even noticed that happening for quite a while now.  And no, I have NEVER experienced any leaks during exercise or sex.

Other Fun Stuff:

My new baby: a V-Star 650 Classic.  :-)

I have also been going out to social events, eating at any restaurant without hesitation, travelling short distances to visit family members, and basically living my life to the fullest.  I took a motorcycle riding class over spring break and bought a new motorcycle the next day.  It's something I've wanted to do for many years, and now I can.  I've been learning to ride and LOVING it.  I've been riding to work for a couple of weeks now, and I'm just about ready to start taking it out of town.  My new man-friend and I have also been planning vacations: backpacking trips, cruises, etc.  I have no doubt that this summer will be packed with fun excursions and adventures.

Healing Scars:

These pics were taken April 8, 2013, two and a half weeks ago, which was just over six months after my first surgery and exactly four months after my takedown.  Feel free to click on the image for a larger view.

This is a shot of all five scars.  Some of them are barely visible, especially in photographs.  Scars 1-3 are from the laproscopic incisions from surgery one. Scar 4 is where my stoma used to be and was closed at my takedown, and scar 5 is the longer incision where they created the j-pouch during surgery one.  Below are close-up shots of each.

Incision one is towards the center of this photograph, barely visible.  The dark spot you see to the bottom left is where they inserted the drain in my side during my hospital stay due to the complications of my second surgery.  This would not have been there under normal circumstances.

Incision two is inside my belly-button.  You cannot see it in the photo or in real life, even if you stretch and peer inside, LOL.  What you do see here above my navel is the scar from where I used to have my belly-button pierced many years ago.

 Incision three is towards the center or bottom left of the photograph.  This was originally a laproscopic incision, but it is more visible than the other lap scars since it was also the site where my JP drainage tube was left in for eleven days after my first surgery.  The dark spot you see in the upper right is where they had a drain inserted in the hospital due to complications from my second surgery.  Again, that would not be there under normal conditions.

Incision three used to be named Stella (my stoma).  This is where my ileostomy was for ten weeks between the two surgeries.  This is the only incision they used during surgery two... They just stitched the small intestine back together, poked it back in my abdomen, and closed me up.  The resulting scar is about two inches long.  The blob you see in the middle is because a piece of the end stitch from inside where they sewed my ab muscles closed was poking through the skin incision during the healing process.  (It was all covered with bandages in the hospital, so I didn't realize it until it was too late.)  It healed that way, and eventually the inner stitch slowly dissolved over time, leaving this darker spot in the center of my scar.  If the stitch had been left inside and under my skin as it should have, this scar would look more like a straight line.

Incision five looks somewhat like a c-section scar.  This is where they opened me up to create the j-pouch during surgery one.  It is three inches long.  It healed up beautifully and is barely visible now, as you can tell from the photograph.

In Conclusion...

So here I am, about six months after my first surgery, back to living a fuller life than I ever had since my UC diagnosis turned severe.  I am a very happy j-poucher and haven't regretted my decision for a single second. I am very optimistic about my future and would be happy with the way things are now, but I know they will continue to slowly improve even more over the next few months.  I will probably start writing less and less now that I'm getting busy with loving life again, but I will try to check back in every couple months or so.  The next time you hear from me will probably be during summer break.  Until then....  keep on fighting the good fight!  :-)

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Back to Life

  BRAT diet = Bananas, rice, applesauce, toast.  Refers to a diet of these specific slowing foods but can also include   bread, pasta, and other white carbs or bulking foods known to slow the bowel.  
  C. diff = Clostridium difficile.  A type of intestinal bacteria, an overgrowth of which can cause severe diarrhea.  
  Butt Burn = The pain and intense burning sensation of the skin around the anus from the irritation that is caused by   the high levels of digestive fluids in the frequent bowel movements after j-pouch surgery .  
  Pouchitis - Inflammation of the j-pouch, usually due to an overgrowth of bacteria and easily treatable with a round of   antibiotics.  
  UC = Ulcerative colitis, a disease of the large intestine that causes inflammation and tiny bleeding ulcers that cover   the intestinal wall.

Well, I was not successful with my goals from a month ago.  In the days following my last post, I discovered how truly unpredictable this recovery process is.  Occasionally I would have a good day, but more often than not, I would spend most of the day in bed either due to withdrawal symptoms from the prednisone and Norco (lethargy, fever, chills, intense headache) or my j-pouch acting up with urgency, diarrhea, pressure...  I found it impossible to make plans - fitness, social, or otherwise - because there was no telling how I was going to feel from day to day, hour to hour.

I had been waiting to be done with antibiotics because I heard that they can sometimes cause diarrhea.  So I thought that my j-pouch function would improve when I came off of them.  Unfortunately, it was the opposite.  As soon as I stopped the antibiotics, I had uncontrollable diarrhea regardless of what food I ate or what drugs I took.  Before this point, I could somewhat predict or control my j-pouch based on whether I had any foods that cause urgency (chocolate, alcohol, caffeine), or when I took my Norco, since narcotics act as a bowel-slower.  But no matter how much BRAT food I ate or how recently I took the narcotic, I was running to the bathroom with pure liquid BM's.  I had way less control than I did before, and this was the only occasion that caused a bit of anal leakage since my surgery.  In addition, the frequency and consistency of my BM's brought with them some of the worst butt burn I've experienced yet.  During this time, I was going about 10-12 times a day, running to the restroom instead of being able to hold it until it's convenient.  I read that the most common cause of antibiotic-related diarrhea is C diff (an intestinal bacteria), and I also know that these can be symptoms of pouchitis (bacterial infection of the pouch).  So when it lasted longer than a couple days, I called my nurse at UCSF.

Prescription narcotics and Imodium (Loperamide) both help
to slow the bowel and reduce number of bowel movements.

According to her, this j-pouch behavior is perfectly normal when coming off of antibiotics.  She ordered a C diff test for me anyway just to reassure me (which came out negative), but she told me not to worry since this is all still within the normal range of j-pouch adjustment and adaptation.  Another friend with UC told me that the same thing happened to him when he came off antibiotics, and the effects lasted a couple weeks.  So I just put up with it, hoping things would improve soon.  What helped is if I took my Norco along with two Imodium as soon as I woke up.  Then within an hour things would slow down a bit - enough for me to feel a little more comfortable laying around but not enough for me to feel confidnet leaving the house.  Sometimes I would take another one in the afternoon if things were bad, and then  I would take the same doses before bed.  Going through this process was a bit of a pain, but true to form, these symptoms died off in just under two weeks.  I had also started taking probiotics a couple days before things improved, so that probably also played a role in getting my j-pouch to behave again.

On another note, I had an appointment with the urologist in regards to the lesion on my kidney and found out there is an 80% chance that it is cancer, so during the whole appointment, the doctor spoke and planned as if it was cancerous.  However, the tumor is still very small and non-aggressive, so there is very little relative risk, especially now that we know it is there.  Since radiation and chemo do not reach the kidneys, I won't be doing any of that unless it was to spread to other parts of my body, which is highly unlikely (less than 5% chance with how small it is).  So there are three main treatment options: 1) open surgery to remove that part of my kidney, which would leave a big deformed scar on my side,  2) laproscopic surgery, which would normally be the most ideal route, or 3) a long needle through my back to freeze and kill the tumor.  Because of my previous surgeries and infections, he would not feel confident performing lapro surgery on me with all the scar tissue and adhesions I probably have going on.  So he is recommending freezing it with the needle.  This method is 5% less effective than surgery, but if it doesn't work, we can always try it again or opt for open surgery later.  Either way, we decided it would be a good idea to make sure my body is fully recovered before treating the cancer, so summer break sounds like a good time to start treatment.   It seems a bit counterintuitive to know I probably have cancer and just sit on it for several months, but the doctor does not seem at all worried.  He said it's perfectly reasonable to wait 3-6 months.  The doctor did agree, though, that because this type of cancer has no symptoms, if we never found it on the CT scan like we did, then we would have never known it was there until it was way too late... so I'm still considering myself a lucky lady.

Overall, though, I have been doing well.  The last week or so things have been returning to normal.  My latest blood panel (CBC) came back normal, and this is the first time that I don't have some sort of complication (incision, blockage, infection, withdrawals, j-pouch adjustment symptoms, etc.) bringing me down.  I do have another ultrasound next week to make sure the inflammation in my uterus is gone, but the last few days are the most normal I've felt in a very long time.

Today's lunch: adding fiber back into the diet.

Currently I am not taking any bowel slowers on an average day, and I am even adding a lot more fiber to my diet: whole grain bread and small salads with dinner, soon to be increased to full salad meals (starting today).  My frequency is an average of about four times a day (in 24-hrs) if I'm behaving myself, or seven times a day if I eat something like chocolate or alcohol, and I am back to having total control - no leaks, no urgency.  This is all perfectly normal and acceptable to me.  In fact, last night I went out to the bar with my roomie and had five or six rum drinks, taking two Imodium around the time I started drinking, and suffered zero ill effects in the morning.  No increased frequency and no hangover.  One thing I did notice, though, is that the rum didn't affect me as much as I thought it would.  Since I haven't been drinking hardly at all in the last five months, I figured my tolerance would be pretty low.  I don't know if my tolerance just never dropped, if the meds affected it, or if the way I absorb and process alcohol has changed since I lost my colon, but I was just a little buzzed off of those six drinks - not tipsy, not drunk, just buzzed.  This is not a problem or anything, just an observation.  I had a good time either way and am happy I was able to go out and enjoy myself without suffering for it the next day.

Baby wipes and ointments can
also help treat butt burn.

The COCO 9500R bidet:
cleaning with a spray of
water after you go can
help treat butt burn.

Just as a side note, at home I have been alternating between using the bidet (a top-of-the-line COCO bidet with a remote control), baby wipes, or regular TP depending on how my butt feels, as well as rotating between A& D ointment, Aquaphor, or using no ointment at all.  I also always make sure if I leave the house that I have a mini-ziplock of baby wipes and a mini chapstick-sized tube of Aquaphor in my purse.  These come in very handy, as public restroom TP tends to be pretty thin and rough.




Anyway, I am so happy to be feeling back to normal, and I think I'm about ready to get back to my life.  I start back to work on Tuesday, and I'm confident that I'll be able to handle it just fine.  I'm also ready to start working out again and plan to add that in daily after work.  I have been waiting for this day for so long... Time to start living, time to spark up that fighter spirit again, and I'm so excited.

P.S. - Here is the latest pic of my healing scars.   (Click on the photo for an enlarged view.)  I didn't bother trying to get a pic of the laproscopic ones since they are almost invisible now.  In a month or two down the road I will do another post all about the healing incisions and will get a close-up of all five scars for ya.  But so far you can see how much the lower one has faded; I expect the stoma scar above it to do the same in a few weeks.

Healing Incisions: 2/17/13.  The three-inch scar along the panty-line is from
surgery number one (10/4/12 - just over four months out), and the two-inch stoma scar above it is
 from surgery two (12/11/12 - just over two months out).  The lower one is normally covered
by my underwear, and the higher one is normally barely below my pants-line.

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Discharge

Well, today's post will be a bit more positive.  I'm happy to report that things have been going very well, and after twenty-four days here at UCSF Medical Center, I'm finally leaving the hospital!  But here is the update of what has happened in between...

I have been feeling great, eating a lot, digesting, and pooping just fine the last few days.  Trying to keep myself busy with reading, watching Netflix, snoozing, and walking a lot (2.5 - 3.5 miles per day).  We've really just been waiting for my white blood count to get down and stabilize and for the drains on my sides to finish draining the fluid build-up and resolve the infected abscess to make sure I don't go home with an infection or something that could turn septic.  So just a lot of hanging out and waiting lately.




My parents (who have been visiting me almost every day) came in with snacks and sparkling cider to celebrate New Years Eve with me and watch the ball drop at midnight.  We gave an extra bottle of cider to the nurses.

The procedure they took me down for right after my last post (which I originally thought would be a CT scan) the doctors actually call a "tube check."  It's where basically the interventional radiologists (IR) have a live video feed of a low-level X-ray showing on a computer screen so they can see where the drainage tube is in my abdomen.  They can insert a contrast solution through the drainage tube that shows up on the X-ray to see where it goes and discover what the abscess cavity looks like, which tells them if it's shrinking/contracting or if they need to reposition the tube to access the area better.   When they performed the tube check (I was fully sedated this time, thank goodness), they found that both the tubes were a bit clogged, so they replaced both tubes, and they found that the one on the left needed to be repositioned.

After that procedure, my white blood count continued to go down, which is good.  They did another tube check on Wednesday (three days ago), during which they were able to remove the drain on my right since it was done doing its job, and they replaced and repositioned the one on my left again so that it could reach to a different area down in my pelvis where additional fluid had built up.  The next morning my white blood count was down to normal range (for being on steroids, anyway).  The doctors wanted to make sure I could get off antibiotics and still maintain a stable white blood count, so that morning they took me off of the antibiotics and detached me from the IV cart. (Yay!)

My white blood count stayed pretty steady, and the left drain never drained much of anything out of it, so after the nurse flushed it yesterday morning to make sure it wasn't just clogged and still nothing came out, they finally removed it yesterday evening.  I was SOO relieved to have it out of me and especially to not be going home with it in, which they said could have been a possibility.  At that point I was detached from everything except the PICC line that was still in my arm, which they removed this morning before discharge.

I forgot to mention in my previous post that about four or five days after surgery, the doctor took the staples out of my surgical incision where the stoma used to be and replaced it with strips of tape.  I'd heard removing the staples could be painful, but it wasn't at all.  I was told to leave the tape strips there until they fell off, which finally happened yesterday evening.  (It would have happened a lot sooner had I been showering, but I've been sticking to sponge baths due to the drains, dressings, and PICC line.)  So here is a photo of what the incision looks like twenty-three days post-op.  It is two inches long.  (Just for comparison, my larger incision from the first surgery, just below this one, is three inches long.)

Meanwhile, my j-pouch has been adapting and learning to function!  This part is exciting for me.  The first couple days on solid food, I had to strain/bear down a good amount to be able to empty everything out, which ended up causing what I believe was maybe a hemorrhoid.  Either way what I felt for a day or so was an intense burning sensation inside my anal canal every time I had a bowel movement.  The outside skin was fine since I'd been using the baby wipes and barrier ointment provided by the hospital to prevent "butt burn", but it didn't reach inside where this particular burning was.  Well I decided if it was a hemmie, I needed to stop bearing down, which I've heard you're not really supposed to do much with a j-pouch anyway, so I tried that for a day.  Even though I felt like I had to go a bit more frequently since I wasn't able to empty everything out each time, it helped, and the burning sensation disappeared.

The milkshake was amazing.

After that things improved even more, seemingly overnight, and for the past few days I have had a perfectly functioning j-pouch.  I am surprised at how well it works this soon after starting to eat solid food.  I haven't been able to count exactly how many BM's I'm having a day (the nurses erase my tally on the white board every time they record it in the computer), but I would estimate 5-8, which is average for someone with a j-pouch.  I will start another tally when I get home so I can give you a more accurate number on my next post.  I have no pain, no urgency, no leaks whatsoever.  I have complete control and can hold it for as long as I want or need, and I can pass gas easily whenever I need to without risk or worry of passing anything else along with it accidentally.  Of course, this may be due to the fact that I had a lot of practice at that particular skill during my seventeen year stint with ulcerative colitis, but either way I'm happy with the results.  Everything functioned great even after eating the fast food my parents brought in one day and the salted caramel chocolates - so good!  (Keep in mind that even though I was still in the hospital, this was like three weeks post-op, so the majority of the swelling had gone down by then.)  I know there will most likely be a good amount of back and forth during the first few months;  I will have to see how different foods affect how my j-pouch functions, and other issues may still arise down the road, but if it's functioning this well after only a few days of solid food, imagine how it will adapt and mature over the next year.  I am happy and excited about starting a disease-free life, and now that the surgical complications are out of the way, so far I am a very happy j-poucher!

Before moving on, I feel I should pause here and explain something that no one ever shared with me before I had surgery.  Because I am now pooping with completely different equipment, all of the sensations and muscle commands involved are different.  (I discovered this while passing mucous daily in between the surgeries but wanted to see how it compared to passing stool.)  Think about it - this is something I've done multiple times a day for my entire life (that's about 30,000 times) - it's as natural as breathing - and suddenly I'm doing it with a new body part.  It's kind of like trying to brush your teeth with your left hand: the body part functions just fine, and it's doing the exact same job, but it feels very weird.  It's a bit awkward and clumsy at first and will take some practice to get really efficient at it.  Because the muscles and nerve endings around the rectum (where your poop is usually stored before evacuation) are no longer there or connected, I now can't really feel anything before the actual anal canal.  Another j-poucher described it as feeling like someone else doing the work/pooping.  In order to go, instead of flexing the muscles around the rectum, I now have to relax all the muscles around my pelvic floor as much as I can while gently flexing my abdominal muscles.  It takes a little practice to be able to really evacuate everything in there.  Some people have tricks like coughing or standing up and sitting back down.  So if you're going to have surgery, really feel and remember what it feels like to poop before you go in, because you will never feel that sensation again.  I kind of wish I had paid more attention the last time I pooped before surgery... There was a short moment between my surgeries where I did have to grieve this aspect just a tiny bit.

Excited to be leaving.

Anyway, I am so excited to be going home today, but before signing off for today's post, I have to stop here and give a shout out to the nurses and staff on the 5 North wing of UCSF Medical Center at Mount Zion.  After spending over three weeks in the hospital here, I have had many of the nurses on this floor, and almost all of them have been amazing.  They are caring, supportive, and respectful, getting me whatever I required and helping me in any way they could.  I can tell they really care about their patients, and they always listened to my needs.  I went through some pretty rough times while I was here, and they all did what they could to make me as happy and comfortable as possible, which really made a difference in my stay here.  I know they put up with a lot in their line of work and see people at their worst, but they still manage to have a positive attitude and show kindness and attentiveness to the patients in their care.  The doctors pop in and out, but the nurses are really the ones that make a world of difference when it comes to those of us on the receiving end.  So nurses of 5 North, I know some of you will be reading this, and I want to say thank you again for the care and compassion you showed when taking care of me.   <3


My posts from now on will become a little bit less frequent as I get back into life with a j-pouch, but I will continue to post photos of how my scars are healing over the months and updates about how the j-pouch is functioning and maturing as I start back at work and get back into my fitness and athleticism.

Here's to the first day of my new life... Grabbing 2013 by the horns!!!  :-D

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Rocking the Takedown!

  ileostomy = A surgical procedure in which a part of the lower small intestine (ileum) is brought through the abdominal wall and sewn in place on the tummy to create a stoma for the elimination of digested food waste into an external bag.  
  takedown = The surgical reversal of the ileostomy, in this case in order to hook up the newly created and healed j-pouch for use.  

The good thing about the preparation for this takedown surgery is that there is NO BOWEL PREP!  (I.e., a gallon of laxative to clean out your colon.)  Woo-hoo!  Since I only have a small intestine now and no colon, all I have to do is a 24-hour clear liquid diet.  So on Monday I sipped on organic apple-juice and free-range chicken broth.  I also had some blue jello.  They don't like you to eat anything red since it could be mistaken for unidentified bleeding during the surgery.  (Side note: my output that night was bright blue - literally the color you see there in the bowl in the photo to the right.)  My parents showed up that evening, and it was a happy reunion since I was full of health and excitement this time.   (Compared to last time they showed up to take me to the hospital when I was gaunt, sickly, dehydrated, malnourished, anemic, and in severe pain.)

 This is my "I'm gonna rawk this surgery" face.

I checked in to UCSF at 9:30, and since we'd just been through all this pre-op stuff ten weeks before, it was all old hat this time around.  I showed ID and insurance, signed paperwork, answered questions verifying my identity and what procedure I was having done, and was escorted to a pre-op room to change into the hospital gown, stylish blue hair net, and the standard tan-colored, rubber-soled booties.  After my IV was hooked up with just a saline drip to keep me hydrated, we proceeded to wait in the pre-op room for an hour and a half while I laid back on the gurney and my parents kept themselves busy with apps on their phones in between chats with me.

Eventually crews of people came in to introduce themselves: nurses, anesthesia team, residents, and finally my surgeon, who told us the procedure would take anywhere from forty-five minutes to an hour and a half.  Then I was given Versed through my IV as before to calm my nerves; I kissed my parents good-bye and was wheeled into the O.R. at just before noon.  This part was kind of hazy because of the Versed was kicking in, but I remember it taking a little longer than last time.  The nurses and surgical assistants took their time strapping the "seat belt" on me, putting electrodes on my shoulders and sides, putting the gas mask over my mouth and nose.... I remember hearing music on the radio before I blacked out.  Again, it was just like going to sleep.

Getting re-acquainted with
the dilaudid pump.  It was a
happy reunion.  :-)

The next thing I knew, I was waking up in the recovery area.  I looked at the clock on the wall in front of me, which said 2:30, about two and a half hours after my surgery had started.  Within a few minutes of waking up, I felt a localized pain growing bolder right around my incision where my stoma used to be.  When I told the nurse this, she gave me a booster shot of Dilaudid through my IV and showed me how to use the Dilaudid pump button like before, and the pain died down pretty quickly.  Since then it has stayed consistently between a zero and a two (on a scale of one to ten).  So then I just kind of relaxed as they kept an eye on me and checked my vitals occasionally.  I noticed there was no surgical drain coming out of me, no second IV in my other arm, and most importantly, no ileostomy bag!!  Fortunately, my foley catheter worked great from the start this time, so no trouble there - couldn't even really feel it.  From my last surgery I knew to expect this anesthesia recovery timeframe to be about an hour and a half, and when it took longer, they told me the reason was because they were waiting for a clean room.   (The hospital was at capacity.)  At this point I had one of the nurses grab my parents to come back and see me since I knew they'd be concerned by then.

We waited as one-by-one everyone else was wheeled out, and finally I was taken to my room around 5:30 PM.  I liked the room I ended up with better anyway, so I didn't mind waiting.  Last time I was right in front of the nurses' station which was super loud and busy all the time - at that point it was kind of good because a nurse would be in my room in under thirty seconds every time I pushed the call button, and back then when the surgery was way more invasive, I needed a lot more help.  But this surgery was such a breeze that I preferred the privacy of the room tucked way off in the corner, away from all the chaos.  Compared to the last surgery, this one was practically painless.  I haven't had any trouble moving around or reaching for things... just a tiny bit of ache around my incision, but that's to be expected, and it's easily controlled with the Dilaudid pump.  I felt well enough to walk that night and suggested it to the nurse, but it was time for a shift change; nurses were buttoning down for the night, and my mom was headed back to the hotel, so we decided to wait until the next morning for the walk.

I didn't get more than a couple of minutes of sleep at a time that first night because of the electronic leg wrap compressors.  (They are used to increase circulation and prevent blood clots when you're in the lying position for so long after general anesthesia.)  They go off every few minutes, so every time I'd start to drift off, they would turn on to squeeze my legs and wake me up.  So it looked like this: drift, sleep for two minutes, wake up.  Drift, sleep for two minutes, wake up.  What was odd is that every time I drifted off, I started a new dream, so I ended up having like twenty different dream fragments that night, LOL.  I knew to expect this though, and I was okay with it.  Even though I wasn't getting solid sleep, it was restful because the lights were out, my eyes were closed, and I was sedated with the Dilaudid.

All five incision scars are actually "visible" in this photo,
though the laproscopic ones are sort of hard to see,
and one is hiding inside my belly button.

Around five-thirty in the morning I decided to give up on sleep, and that's when the doctors happened to come through for their rounds.  The head doctor asked how I was doing and wanted to see my incision.  I really was feeling spectacularly well for just having had surgery, so I told him I was doing great, and he peeled back the bandage to have a look.

Frankenstitch close-up.  (R.I.P. Stella.)

This is the first time I caught a glimpse as well.  It was a cut about an inch-and-a-half to two inches long, and it was held together with five staples.  It looked kind of Frankenstein-ish.  I knew from my pre-op visit with my surgeon that this incision could not be sealed up with glue since it was not a sterile incision due to being the former location of a waste evacuation site (my stoma).  So aside from the staples holding the skin more or less in place, it needed to be able to drain and breathe.  He had the other doctor (assistant or resident) stay behind to cover it with a new bandage.  This is when I noticed a reaction in my abdomen similar to my last surgery: when certain locations were touched even very lightly around my incision, it would trigger an involuntary response.  Last time it felt like shooting nerve pain; this time it was just a muscle spasm around my incision site.  It didn't really hurt, but it was startling and uncomfortable when the muscles right around my cut clenched up like that uncontrollably, so we did what we could to avoid it by just placing the tape very gently.  I noticed the same reaction later in the day when the nurse pinched the side of my tummy for my heparin shot - it triggered an involuntary spasm on the other side of my belly by my incision.  Very strange.  But it had all just been cut and rearranged a bit, and maybe some wires had been crossed or confused in the process, so I wasn't worried.  I knew it would sort itself out within a day or two.  (Just FYI, this is definitely not a normal response/reaction to this type of surgery, so don't think or expect that it will happen with you if or when you ever get to this point.)

Right after the doctors left is when I started asking the nurses if I could start getting my walks in.   They like you to walk as much as possible to encourage blood flow, proper breathing, and GI motility, which all help in the recovery process.  However, when I brought it up the nurses were in the middle of a shift change, so I  had to wait for them to report out to the new nurses and then for the new nurses to make their rounds.  I would have gone on my own, but they insist that your first time standing up be supervised so they can watch your blood pressure and make sure you don't pass out.  So I didn't get to start walking until around 10:30.  But the good news is that my nurse took the catheter out before she had me stand up.  Yay!!  It is so nice to have that thing out once it's been in for a while.  After taking off the leg compressors, unplugging my IV stand from the wall, and untangling the IV lines from the bed, she supervised as I very slowly sat and stood (the pain meds can kind of rush to your head at this point making you feel dizzy if you're not careful), and then she walked with me for most of my first lap as I held on to my IV stand for extra support.  Once she was convinced I was fine on my own, which I was, she left to go change my bedclothes and set up the "hat" (plastic bowl with wings that sits down in the bowl of the toilet) to catch my urine.  They measure everything that comes out of you during your entire stay.  I walked two laps around the floor on my first time out.

A little bit later my Mom showed up with Christmas lights to tape around my bedside table, a little stuffed Santa and snowman to set up, and Christmas music coming out of her ipad.  It was very sweet, and all the nurses got a big kick out of it.  This will be the first time in a lot of years I won't be able to go visit family for Christmas since I'll be recovering from surgery, so she brought Christmas to me.  Plus, what better Christmas gift could I get than a functioning j-pouch?  After she showed up and finished decorating, we walked three more  laps together.  We did four laps later that afternoon, and finally five on my last round of the day when my father showed up.  (He had been working from his computer at the hotel.)  So I completed fourteen laps altogether on day one.  Walking was pretty comfortable from the beginning, and I was able to stand upright with no problem.  Other than that I spent most of the day relaxing, cruising Facebook, watching a little TV, chatting with my Mom, and dozing here and there.

Because the surgeon needed to shut down my GI tract in order to operate on my intestine, I knew that the first sign of my guts "waking up" after surgery would be passing gas.  That is what the nurses and doctors are always asking about is when you start farting.  This lets them know that the intestine has started functioning again and it is okay to start introducing fluids by mouth, otherwise before that it would just come right back up.  So during the first night after surgery, I was pleased to notice gurgling noises and sensations in my tummy, and at 6:30 AM, I had my first little toot.  This seemed promising, and I started thinking I might be able to eat solid food by the end of the day.

Day one stat board showing my diet as restricted to ice
chips only, and a check-off of all my walks that day.

Unfortunately, the next fart didn't come for another ten hours.  Around 4:00 I was able to pass a couple more little ones, but I could feel there was a lot more gas in my belly waiting to get out.  It was not painful, but it just felt a bit bloated.  So all of the first day I was only allowed to chew on ice, and nothing more.  Around 6:00 in the evening my nurse gave me a half of a cup of chicken broth, which seemed to move things around more in my belly and build the pressure a bit more, but still nothing came out.  By 9:00 it started getting a little uncomfortable, so I told the night nurse, and she brought me a heating pad, which seemed to help a bit.  Then around 10:00 she brought in a cup of chamomile tea I had requested, and that totally did the trick.  As soon as I started sipping it, I started tooting away, and I continued passing gas for the next few hours until all the bloating was gone.  In fact, I'm still passing little farts here and there as I write this at 12:30 AM.  This is a great sign - it means that tomorrow I will be able to eat.

Chillin in my room, checking emials and posting
 updates on HealingWell and j-pouch.org.

I have to say during the first day and night, this room was way less busy than the last time I had surgery.  During my last inpatient stay, it seemed like someone was coming through at least every hour to check vitals, empty drains, ask questions about pain and functioning, look at my incisions, check out my stoma and output, give me pills, give me shots, give me food, replace my IV bags, clean my room, etc.  This time it was relatively quiet and peaceful.  I still had my assigned nurses coming in every four hours or so to check on me and take vitals or empty my catheter, but not nearly as crowded as last time, which was nice.

So overall the takedown surgery and immediate recovery has gone SUPER smoothly and with flying colors.  No complications, plenty of mobility, and hardly any pain.  Now it is the end of day one.  Tomorrow I will be introduced to more clear liquids in the morning (apple juice, broth, jello), and most likely "full liquids" that evening (thicker soup, pudding, yogurt), and then gentle solids the next day.  So in a couple days I will post again to tell you how my j-pouch functions when it's required to pass something other than gas!  This is where it could go either way... so it's a tiny bit nerve-wracking, but since everything so far has been going so smoothly, I have confidence that this next phase will too.  I'm excited to see how it goes!


P.S. - Right after I published this post, I went to the bathroom to urinate and was surprised to find that I also passed my first itty bitty little poo!  (2:30 AM)  It must have been the half a cup of chicken broth since that's all I had aside from water on day one!?  Bizarre!  I almost wanted to take a photo since it was the first "product" of my brand new j-pouch, but figured that may be going a little too far, LOL!  I gently wiped with a baby wipe and applied some skin barrier ointment provided by the hospital in order to start the routine required to prevent the dreaded "butt burn".

P.P.S. - In the couple of days following this post, I ended up with some post-op complications which required me to stay in the hospital for a lot longer than expected.  None of them had anything to do with the j-pouch or its function; they were all just issues that could come up after any major abdominal surgery.  So my next two posts include some of the most difficult things I have been through yet.

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Healing Incisions

When I was considering and deciding on surgery, one of the things I was quite interested in was how well and how quickly the incisions would heal, and what kind of scars they would leave behind.  Therefore, in today's post I will just be showing you how all of my incisions look one month out from surgery.  You can click on any of the photos to get a larger view.  My surgery was October 4th, and these photos were taken November 3rd, thirty days later.

First, here is a view of my entire abdomen, with the locations of all five incisions labeled.  You can see here that the marks left behind the incisions are already quite minimal.  I used to try to scrape off the gummy tape leftovers every bag change until I realized that keeping my tummy free from gummy adhesive was a hopeless feat.  As soon as I scraped it all off, there was more there instantly,  and it started really aggravating my skin to scrub and scrape hard enough to get it all off anyway.  So even though it drives my OCD brain a little nuts, I'm just living with it until my take-down surgery.

Incision 1: right laproscopic incision

Incision 1 is the only real normal/typical laproscopic incision you can see.  When I came out of surgery, it was covered with a dab of surgical glue that kept it clean and sealed off.  The glue remained there for just over three weeks, when it finally peeled all the way off along with the scab behind it.  I think by the time this one is fully healed, it will be practically invisible.

Incision 2: center laproscopic incision,
inside my belly button.  (Not visible)

Incision 2 is another laproscopic incision, but it is hidden inside my belly button, so you can't even really see it at all, even in person.  (What you CAN see there is the remnant holes from when I had my navel pierced many years ago, LOL.)  This incision was also covered in surgical glue, which means my belly button was almost filled with glue for a few weeks.  I was glad to finally pluck the glue pieces out with tweezers when they eventually started falling off.

Incision 3: right laproscopic incision

Incision 3 is where the JP drain was left hanging out of me after surgery.  I was sent home from the hospital with the drain left in, and it was removed ten days after surgery.  After it was removed, it left a deep, gaping hole that I thought would leave a nasty scar, but it seems to be healing up pretty nicely now.  I think it will also be quite minimal once it is completely healed.

Incision 4: the stoma

Incision 4 is Stella the stoma.  It is located pretty much right at my pants-line.  (I wear my pants pretty low on my hips).  Notice how small and svelte she's gotten since the swelling has gone down from the surgery.  (Compare this pic to the one in my post called Bag Change Time.)  You can also see that my skin is a little darker in a ring around the stoma where it is a bit irritated from the very sticky adhesive wafer/flange being pried off shortly before this pic was taken.  Stella changes shape every minute of every day... since she is always pulsating and flexing, sometimes she sticks out pretty far, and at other times she is almost completely flat against my belly.  During this particular bag change, when I took these photos, is the first time I noticed her edges (the gap between stoma and tummy skin) starting to heal and close up.  Before this, she has been mostly held in place with soft stitches.  I'm not sure if it was this healing process or some tiny bit of leakage that was causing the itching that instigated this bag change.  I will be interested to see how this incision heals after take-down once they poke Stella back into my belly and close up the hole.

Incision 5: the 3-inch cut

Incision 5 is where they actually had to cut me open in order to create the J-pouch.  The incision is three inches long.  From what I understand, after they removed my colon and rectum, they pulled out the lowest part of my small intestine (ileum) through this incision to create the pouch externally, and then they pushed it back in when they were done so they could attach it to what was left of my anal canal.  When I came out of surgery, there were tiny, barely-visible stitches on this incision, and it was also covered in surgical glue.  The stitches (if they were even there) dissolved on their own and disappeared, coming off with the glue.  I am impressed with how clean this incision came out and how nicely it seems to be healing.  I'd love to start putting scar cream on it to minimize the appearance even more, but the adhesive tape of the ileostomy bag covers half of it, so I'll have to wait until after take-down surgery to start using anything on it.  Either way, this incision is well-below my pants-line, only a couple inches above my pubic bone, so it will never be visible unless I am fully undressed, and even then I think you'd have to be looking pretty closely to notice it.

Here are a couple side views of my tummy.  (I have a plastic bag tucked into my pants to catch any output in case Stella starts spewing, which she frequently does.)  I find it odd/interesting that the stoma seems to have changed the shape of my abdomen... You can kind of see how the curvature of my belly is no longer a nice round/flat shape - it sticks out a bit above Stella and then kind of tucks in a bit underneath her.  (This is a little more visible in real life.)  I'm not sure if it's is due to the stoma itself or the fact that there is a partially full bag hanging from that location all the time, pulling it in that direction.  I assume it will go back to normal, though, after the ileostomy is reversed.  (It better!)  

You can also see how my tummy has grown since some of my first pics right after surgery.  Some of the effects of prednisone cause a large increase in appetite as well as concentrated fat storage in specific odd locations, including the face, tummy, and back of neck.  So you can see that even though I am still at a very healthy weight for my height, I have gotten a little layer of fat here over my abdomen.  A few months from now, once I can workout to my heart's content and eat veggies and whole grains again, I will work it off.

Overall, I am very pleased with how everything is looking and healing.  Before I started this whole process, I was concerned about the scars that would be left behind, worried that the awesome abs I was working so hard towards would never look quite perfect.  However, now I have almost a fondness for these marks.  They will be permanent reminders of everything I have been through, never letting me quite forget how strong I am.  And I think that when everything is said and done and I am able to work towards those awesome abs again, this will only add beauty to the final picture.

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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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