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.

Thursday, April 25, 2013

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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3 comments:

  1. Lol, I was just thinking how you were doing!!!
    I very happy for you! I see my surgeon on may 15th!!!
    I hope my jpouch is as good as yours.....

    ReplyDelete
  2. Congrats! That is so great to hear that you are doing so well! Enjoy every minute of your "new" life!
    B

    ReplyDelete
  3. It's wonderful to finally hear from you again! I'm so happy to hear you are doing well and you're living life again.

    ReplyDelete

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