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.

Sunday, November 11, 2012

Gratitude and Hope

  UC = ulcerative colitis     BM = bowel movement     IPAA = ileal pouch anal anastamosis, a.k.a. J-pouch surgery  

No, recovering from surgery is no walk in the park.  Yes, living with an ileostomy is a pain in the butt.  Would I choose any of this over a healthy colon?  No way.  It would not be difficult to dwell on the negative aspects of everything I am and have been going through.  But when you compare it to what life was like before surgery - I am nothing but grateful.

I have shed tears a good handful of times since my surgery.  One of those times was from the particularly painful bout of gas I had during week two (described in my post entitled "Recovery: Week Two"), but other than that every time I have cried, they have been tears of gratitude.  Two days ago on the way to my follow-up appointment with my surgeon, I found myself thoroughly enjoying the act of dancing to the music in my car as I was driving in to San Francisco.  All of a sudden I realized how valuable a moment like this is - the ability to find such joy in such a simple activity - and I started thinking about all of the "dancing" moments I had ahead of me as I continue to gain back my health and my life, and the tears started flowing.

When I peruse the support group message boards (listed to the right of this page), it is easy to become discouraged.  Most people who go there are people who are having issues and problems and are looking for answers, advice, or comfort, and so of course much of what we read there will not be positive stories.  (The success stories who are happy with their results are generally out living their lives, not spending time in online support groups.)  And although many people there try to remain encouraging, there are always a few who put more focus on the negative than is necessary and make everything sound like the end of the world.  Yes, it is a place to vent and rant if you need to, and yes it is important to be honest and unbiased, but if you spend the majority of your time and energy focusing on the negative, then of course you will have a more negative experience.  Speaking from many years of personal experience with both clinical depression and genuine happiness, if we spend more time focusing on what we HAVE than what we don't have, it makes for a happier life, regardless of what sort of circumstances we're facing.

So in the spirit of appreciating the things in our life that keep us going, here is my list of things that I am currently grateful for:
  1. My returning health.  The ability to live a mostly pain-free existance and truly enjoy the small stuff.  The ability to eat almost whatever I want without worry (aside from how it will affect my waistline).  The ability to sleep peacefully, enjoy walks outside, and visit with friends.
  2. My family.  They have always been great, but recently they have been there for me (some emotionally and some physically) the whole way and have been nothing but helpful and supportive.  I really lucked out with what a wonderful family I have.
  3. Developing friendships and other acquaintances.  I feel like I am just starting to make some solid friends for the first time in a long time.  It's been long overdue.  And when I became really sick and scheduled surgery, the support just started pouring out of the woodwork.  I got help and well wishes sometimes from people I didn't even know.  Finding out how many people cared and were there for me was definitely a silver lining.
  4. My job.  I love working with the students, and my schedule at work with first period prep is perfect for me (even though I'm not currently working).  But what's even more important is the close-knit community of the staff who work there.  I love my boss, and I feel like all my coworkers care about each other and all have my back.
  5. My living situation.  I rent a house that is the perfect size for me with a fenced backyard for my awesome dog (who I'm also grateful for).  It is situated in a location I love: right by the water with a beautiful walk down to the restaurants and bars of the quaint little downtown scene.  In order to pay off some debt faster I decided to rent out one of the rooms to another renter who has been my roomie now for nine months, and we get along great.  Although I don't want to live here forever (I plan to buy a house soon in a different location), it is perfect for this particular stage of my life.
  6. My financial situation.  I'm just now to the point where all of my debts (except my student loans) are about to be paid off, and I will start getting ready to buy a house.  I am just beginning to have money in the bank at the end of each month again (since my move to the bay area) instead of living paycheck to paycheck, and that's a great feeling.
I find myself constantly remembering and thinking about the things on this list that I like about my life, and it brings me a feeling of contentment every time.  So I encourage all of you to create a list of things you're grateful for, especially since Thanksgiving is right around the corner, and to revisit it often.  In the meantime, here are some quotes from some medical studies I recently came across that might raise your hopes a little about the prospect of surgery:

Long-Term Functional Outcome and Quality of Life After Stapled Restorative Proctocolectomy
"Long-term quality of life after ileal pouch [j-pouch] surgery is excellent."
"On a scale of 0 to 10, mean happiness-with-surgery scores for each of the four postoperative intervals studied ranged from 8.9 to 9.3. "
"...quality of life was shown to increase after the first 2 years after surgery, and there was no deterioration thereafter."
"Ninety-eight percent of patients would recommend the surgery to others."
Long-term functional results after ileal pouch anal restorative proctocolectomy for ulcerative colitis: a prospective observational study.
"At 5 years, patients judged quality of life as much better or better in 81.4% and overall satisfaction and overall adjustment as excellent or good in 96.3% and 97.5%, respectively."
"We conclude that the IPAA [j-pouch surgery] confers a good quality of life. The majority of patients are fully continent, have 6 bms/d on average, and can defer a bm until convenient. When present, incontinence improves over time."
SSAT Patient Care Guidelines: Management of Ulcerative Colitis
"Patient satisfaction is very high in patients with UC who undergo colectomy."
"When the IPAA [J-pouch] procedure is performed at centers with significant experience, at least 85-90% of patients have long-term functioning pouches. Nearly all patients would recommend the surgery to others, regardless of their operation (i.e., proctocolectomy with ileostomy or with IPAA )"
"At least 85% of patients have perfect fecal continence. In general, sexual function is preserved."
Prospective, age-related analysis of surgical results, functional outcome, and quality of life after ileal pouch-anal anastomosis
"Pouch failure occurred in 4.1% (pouch excision or permanent diversion)."
 "Overall, 96% of patients were happy to have undergone their surgery, and 98% recommended it to others."
Quantification of Risk for J-Pouch Failure After Ileal Pouch Anal Anastomosis Surgery
"The Cleveland Clinic series presented today suggested an overall failure rate over this 20-year period of about 4%, although they stratified the failures by time during the overall study period. In the 1980s the failure rate was around 15%. In the 1990s it dropped down to about 4%. In the last 5 years it has been approximately 2%. Again, the main contributor to failure was Crohn’s disease or suspected Crohn’s-related complications."
Surgery for inflammatory bowel disease
"A study of 1895 patients suggested that quality of life and quality of health following IPAA [j-pouch surgery] was similar that of the general population."
A comparison of hand-sewn versus stapled ileal pouch anal anastomosis (IPAA) following proctocolectomy: a meta-analysis of 4183 patients
A chart from this study shows that anal leakage only occurs in about 15% of patients who received the double-stapled technique (vs. about 27% of those who were hand-sewn), and this improves over time.

In my research (closely reading a multitude of medical studies as well as talking to hundreds of people online) I found that ALL of the statistics for the success of the j-pouch significantly improve even from what's listed above based on four main factors:
  1. When patients have specialized, experienced surgeons.
  2. When they have used the newer double-stapling technique over hand-sewn anastamosis (attaching the parts).   
  3. When they have had a temporary loop ileostomy to allow the j-pouch to heal before use.  
  4. When the surgery is not performed in an emergency setting and the patient has time to choose the most appropriate surgical option.
Since all of these apply to me, I'd say my chances are pretty good!  Which is just one more thing to be grateful about.


P.S. - Be sure to check out the "Just for Laughs" section I added at the top right-hand side of this page, guaranteed to give you a good chuckle.




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3 comments:

  1. I just wanted to say that you are a beautiful person...That is all.

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    Replies
    1. I don't know who you are... but THANK YOU. <3 <3 <3

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  2. I'm just calling it like I see it. Alhtough I have not had surgery yet, we have a lot in common...main difference is that I'm a dude, lol. Like you, I'm also in my prime and involved with sports, friends, jobs, etc and trying/wishing to be normal. Strong chance I get surgery to fix my UC in the next year or so, and thankfully you have cut my fears exponentially. It feels good to see others living life to the fullest even under certain degrees of adversity. Anyway, feel free to friend me on the book -
    Geoffrey C Pidano.

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