Summary Bio

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

Thursday, November 22, 2012

About The Bag

  UC = ulcerative colitis        ileo = short for ileostomy        ostomate = a person who is living with an ostomy  
  ostomy = an artificial opening for the elimination of bodily wastes (includes ileostomy, colostomy, urostomy, jejunostomy, etc.)  
  tail = the skinnier, bottom part of the ostomy bag where the output drains from when emptying.  
  takedown = surgery in which the ileostomy is reversed and j-pouch is hooked up for use.  

I've spent a lot of time talking about the disease, the surgery, and the recovery, but I haven't really delved into what it's like to live with an ostomy bag day in and day out, so I figured I'd dedicate a post to listing off all the little things I've observed, noticed, and learned about living with an ostomy so that those who are going to go through it one day know what to expect.  I've only been living with my ileostomy for seven weeks now, so some other people who have been living with theirs for longer may be a better resource for all things bag-related, but here is what I've come up with so far... the good, the bad, and the ugly.

  • First and foremost is returned health; for many people an ostomy has given us our lives back and saved us from disease, which means no more cramping, pain, malnourishment, chronic dehydration, bleeding, running to the bathroom 15-20+ times a day, hardcore drugs, side-effects, risk of rectal/colon cancer, etc.
  • You have the freedom of emptying when it's convenient, which comes with the ability to leave the house, socialize, work, run errands, camp, hike, and do all sorts of other sporty activities without worrying about when you're going to use the loo.
  • It is possible to "go" without having to drop trou, which can come in handy during emergency-type bathroom situations (camping, kayaking, rock-climbing, stuck in traffic, broken toilet, porta-potty, bed-ridden, etc).  When it normally might be inconvenient to take down your pants and cop a squat, you can just empty into a ziplock or old yogurt container or whatever, or you can buy non-drainable pouches and just replace the whole pouch.
  • You have the freedom of eating almost anything.  (Just avoid foods that could cause blockages).
  • There is no urgency or cramping associated with bathroom use, and constipation is a non-issue.
  • Males retain the ability to urinate standing up, whereas previously with a disease or later after takedown while adjusting to a J-pouch, urination may trigger incontinence.
  • You are able to pass gas (out your stoma) without accidentally passing anything else (out your bum), which could happen both with disease or with a J-pouch.
  • Your "farts" don't smell... until you open the bag to empty it.
  • There are many supply/appliance options available so that if you are having trouble with the stoma site and bag itself, there are always other things to try until you find something that works.
  • No more colonoscopy bowel prep; just a 24-hour liquid diet for any scopes or procedures... though I believe this is true of any colostomy procedure and continues to be the case after takedown.  (See my link Dave Barry: A Journey Into My Colon under my "Just For Laughs" section to the right if you don't know what I'm talking about when I refer to bowel prep.)
  • Emptying the bag and cleaning the tail 4-8 times per day can be a hassle.  It can be time consuming as it takes several minutes in the bathroom each time, often getting a tiny bit of output on the hands in the process.
  • 1-2 of those times are at night, which interrupts sleep (though nighttime restroom use will also be an issue after takedown with a functioning J-pouch).
  • Changing the bag twice a week is a hassle.
  • Your bag can fill with air which can make it appear and feel more full, requiring you to either empty or "burp" the bag.
  • The risk of a blockage is terrifying since I've heard they are extremely painful and can last from hours to days.  (Fortunately, I have never experienced one myself.)
  • Finding the right individualized combination of supplies that work can be a complicated and frustrating trial-and-error process.
  • Irritation and ulceration (open sores) form around the stoma if output seeps or leaks under the wafer and comes in contact with the skin, which is very common and can be quite painful.  In fact, frustration over unsuccessful attempts to treat and prevent this has almost brought me to tears more than once.
  • Appearance and yuk factor can be difficult to get used to for both yourself and others, including during intimacy.
  • The feeling of air or output passing out of the stoma can be distracting (though I'm sure after enough time of living with an ostomy, one would stop even noticing this).
  • The little burps and fart noises the stoma makes can be distracting or embarrassing, especially when it happens at the most inopportune times.
  • Clothing/wardrobe can be a concern; certain clothes can be less comfortable or require more frequent bag-emptying, especially for women's tighter styles... not to even mention swimsuit season.
  • The feel of the bag hanging and flopping around and plastic of the bag on your skin all the time can be annoying.
  • Living with adhesive tape, appliances, and gummy adhesive residue on your tummy all day every day can get itchy, uncomfortable, and old.
  • The bag sometimes crinkles and makes noise when you walk or move around.
  • Emptying the bag can be quite stinky unless you use some preventative measure (oral pepto tabs once a day or either hydrogen peroxide or deodorizer drops in the bag at every change), which can be embarrassing if in a public restroom or a guest at someone's house.
  • There is always a fear/risk of a major leak or blowout, which would result in gross output everywhere.
  • When travelling I have to bring a whole extra bag of stuff to carry all the supplies I will need for bag maintenance while away.
  • The need to take a set of extra emergency supplies wherever you go just in case of a major leak can be a hassle.  (Personally, I just keep a set in the car and call it good.)
  • Ostomy supplies can be extremely expensive if not covered by insurance.  Fortunately, mine are 100% covered.  (Everything else surgery-related has been as well.  Go Blue Shield!)
  • The output sticks to the side of the toilet bowl (at least in my case) requiring me to clean the toilet frequently.  (Although a messy toilet was also the case with UC.)


  • After emptying your bag and then squeezing and swiping out the bulk of the output from the tail with a bit of toilet paper, you can use a baby wipe to swipe/clean out the tail the rest of the way.  It is quicker, more effective, and uses less TP.
  • After you empty your bag, if you want extra cleanliness you can use a small squirt bottle to squirt water into the bag, swish it around to rinse out the bag, and then let it drain out.  It is a safe way to clean out the bag and the stoma area between changes (though it is not really necessary) and can save on toilet paper from constantly wiping out the tail.
  • Showering can be done with or without the bag attached (like during bag changes), but if you go bagless and there is ulceration around the stoma, the water will sting like a bitch.
  • Nail polish remover can help get the adhesive residue off your skin more easily.
What ileostomy?
(6 weeks out)
Wearing It:
  • It's common to tuck the bag into your underwear so it's not hanging down and flopping around.
  • If your stoma is right at your pants-line, in the beginning it will be uncomfortable to wear jeans or tight pants, but eventually this will change.  Right around the six-week mark is the first time I found I could wear skinny jeans buttoned up and still be pretty comfortable.
  • A belly band (like what pregnant women wear over their pants) worn underneath clothing can help hide the look of the bag as well as provide an extra layer of support.  In the beginning when pants can be uncomfortable, you can wear a belly band over unbuttoned pants when going out in public (especially females), and it is not noticeable at all and looks just fine.
  • If you don't want to spend the money on special underwear, belts, or bands, simply wearing two layers of underwear can provide a layer of comfort between the bag and the skin while also providing a place to tuck the bag so it's not hanging down and flopping around.
Supplies & Maintenance:
  • Call all the main ostomy supply companies, talk to their on-staff stoma nurses to explain your specific situation, and have them send you samples they recommend so you can try out different combos that might work for you.
  • The Eakin ring is moldable and can
    fit around any stoma size
  • Moldable wafers can be beneficial while your stoma is shrinking since they can fit a variety of sizes, or for more stable stomas that stick out further.  However, since they are meant to hug your stoma, if you have a loop ileo that moves around and retracts flat against your tummy frequently, that can break the seal which can allow output to seep under and come in contact with your skin.  (Big NO-NO!)  

  • Eakin Seals used in combination with a convex-shaped pre-cut or cut-to-fit (or even moldable) wafer can keep a seal that stays in place better around moving, retracting stomas.  My ulceration was completely gone within two bag changes using an Eakin Seal.  Wearing an ostomy belt (just a thin white elastic band that attaches to the bag) can also help keep things in place if leaking or seepage is an issue or during more intensive activities.

Friar's = Magic?
Make sure the ingredients are correct.
  • There are many ostomates on the Healing Well website who say that this stuff called Friar's Balsam works like magic to both prevent and treat irritation and ulceration without having to use any other powders, wipes, or seals, but you have to get the right type.  However, it is only available online and can be very difficult to find.  I ordered some from this website, and it is the right stuff (see photos).  Unfortunately, it did not work like magic for me.  If I don't use an Eakin ring, the ulceration comes back from output seeping under the wafer, so now I still use the Friar's under the Eakin to help heal any ulceration and irritation.  I think my stoma is just finicky.
  • Many are fans of one-piece systems, but I use a two-piece system because I can get a close look at how close of a seal I've got between my wafer and stoma, making sure there is no skin exposed before I attach the bag.
  • Emptying the bag more frequently can be more comfortable (the fuller it gets, the heavier and bulkier it is) as well as pull less on the adhesive seal, helping to prevent leaks.
  • The more frequently you change your bag, the less irritation and ulceration will result.  I was told every 4-5 days is common, but I've found every 2-3 days to be more effective for me.  However, now that I have found the Eakin ring to help prevent ulceration, I may be able to go longer.
Fruit cups = a safe way to eat fruit
  • In order to prevent any blockages, make sure you avoid certain foods during the first six weeks after surgery and then *slowly* and *carefully* reintroduce them.  OR if you're like me and terrified of a blockage, you can just stay away from these foods until your takedown.  Foods to avoid: anything fibrous (veggies, fruit skins, pineapple, coconut, etc.); anything hard and difficult to break down and digest (nuts, seeds, etc.); anything with a visible husk or membrane (whole grains, whole oranges, etc.).  
  • Little fruit cups meant for children are a safe and easy way to eat fruit since they have no seeds, skin, membranes, etc.  I get the all-natural kind that are stored in their own juices (instead of high-fructose corn syrup).
  • Odwalla Superfood and/or V-8 can also help provide some of the fruit/veggie nutrition you miss from avoiding whole fruits and vegetables in the beginning.
  • Food comes out looking and smelling a lot more like how it started.  You can usually tell which meal it is you are emptying out of your bag.  For example, little spices and seasonings come out in-tact, and eating a box of Red Vines can make you think you're bleeding to death before you remember that the bright red stuff coming out is just the candy coloring.  Applesauce comes out looking EXACTLY as it did going in, only it more than triples in volume.
Handy Tips:
  • Eating a few tablespoons of peanut butter can stop output for two hours, about thirty-five minutes after you eat it.  (Handy for bag changes, swimming, or intimate encounters.)  I just eat a toaster waffle or piece of toast loaded with it.
  • When the bag starts filling with air, you can "burp" it: hold the tail higher than the stoma and squeeze the output down and away from the tail; then unclip the bag and carefully press the air out, and replace the clip.  There is a way to do it from the top if you have a two-piece system, but I'm always afraid this method is too risky and could cause a mess, so I've never tried it.
  • Pills are okay to take and will get absorbed just fine as long as they are not extended release or covered in a strong, protective coating.
  • Some people are too nervous to sleep in certain positions, worried about squashing their stoma or their body weight on the bag causing a leak, but I have slept in every position many times (even on my stomach) with absolutely no problem.  It does not interfere with the function of the stoma, and I've never had a leak.  (Just make sure you wear clothes over the bag, especially with a two-piece system, so that the bag doesn't get caught up as you toss and turn and change positions.)
  • Don't let a cat jump on your lap unless you are carefully guarding your bag, as cat claws seem to be perfect tools for puncturing the bag and causing leaks.

Although output can range from thin and runny to thick and bulky within the course of a day, the thin, runny output is not what we're aiming for.  In fact, it can be problematic for a few reasons.  It gets under the seal of the adhesive wafer more easily, which makes it more likely to cause seepage or leaking.  If it is too runny too often, it can also mean things are going through your system too fast, risking malnourishment and/or dehydration.  So here are a few ways to thicken output:
Bread, banana, and applesauce:
three components of the BRAT diet.
  • Eat thickening foods (they call it the "BRAT" diet): banana, rice, applesauce, toast (or bread).  I found that my morning whey protein shakes run right through me as liquid, which means it may not be absorbing properly.  If I add a full banana, it thickens things up, slows down digestion, and keeps me feeling fuller for longer.  Hard cheese and peanut butter can also slow things down.
  • Avoid foods that can cause thin, runny output or speed up motility, like sugar, caffeine, and alcohol.
  • Don't drink much water during your meal.  It is important to hydrate, but space the majority of your fluids out twenty minutes before or after your meal.  (Although the first week or two after surgery while things are still very swollen, it is a good idea to sip lots of water with your food in order to keep things easier to digest and flowing smoothly.)
  • Add soluble fiber supplements to your diet; some prefer Metamucil while others prefer Benefiber.  These will gel up and come out as a thick, cohesive output that slides right out of the bag and is easy to clean.  The Metamucil wafers are tasty and easy to take with you as a snack.  Just make sure to time it at least two hours from any medications since it can affect absorption.

Gas is not dangerous at all, but it can be uncomfortable, noisy, and can fill your bag with air, and during the first two or three weeks while swelling is still high, it can be very painful.  So keep in mind that the same things that produce gas before an ostomy will likely still cause gas.  If you're trying to reduce gas production, here are a few suggestions:
  • Avoid foods that can cause gas, like cauliflower, cabbage, beans, sprouts, broccoli, beer, and other carbonated beverages.  
  • Eat yogurt or take probiotic supplements.
  • Don't chew gum or drink through straws.
  • Take Bean-O with meals to prevent gas, and/or take Gas-X once you have gas to help it pass more quickly.  (These work better for some people than others.)

Unfortunately, since I have not been approved for exercise during the time between my two surgeries, I cannot comment on how it is to work out or play sports with a bag.  However, I hear people do this all the time just fine; I imagine it would just take a little extra planning.  What I have noticed is that when I move around too much (like fast walking), my appliances can sometimes get a little itchy or uncomfortable, but I suppose one would get used to this over time.

Although many people are very happy living with their ostomies, and some ostomates might even feel offended by my saying this, in my opinion living with an ostomy is honestly quite a hassle.  However, like I have said before, I greatly appreciate it for what it's done for me, because it has given me my life back; it is surely better than living with the advanced stage of the disease I had, and having it in place while my "new pluming" heals is giving me a better chance at a successful J-pouch.  I definitely wouldn't WANT to live with an ostomy forever, but it is certainly doable if I didn't have much of a choice.

P.S. - Everything listed above is just what I've noticed myself or learned from online message boards.  Any people who are more experienced ostomates are welcome to chime in on the comments section of this blog to correct or add to these lists!  

Feel free to leave reactions and comments below...
  Previous Post                                                                                                             Next Post  

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.

Feel free to leave reactions and comments below...
  Previous Post                                                                                                             Next Post  

Sunday, November 4, 2012

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.

Feel free to leave reactions and comments below...
  Previous Post                                                                                                             Next Post  

Saturday, November 3, 2012

Infection... Or Drug Addiction?

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

A week ago I was making such beautiful progress with my recovery - my last walk was even over a mile - and was feeling confident about my progress and excited about everything I wanted to start doing, when all of a sudden I was back in bed 24-hours a day.

I had been getting brief/mild episodes of cold sweats here and there occasionally since surgery, but I just figured this was part of the healing process.  Well late Friday night and into Saturday morning, I got a bout that was pretty intense and just wouldn't quit, so I took my temperature and saw that I had a mild fever (99.0).  I popped one of my Norco pills (since it has acetaminophen in it) and felt better after a couple hours.  Once the pill wore off, though, the fever started creeping up again, so I took another pill.  I ended up rotating between Norco, Tylenol, and Advil to control the fever.  While the pills were in effect, my temperature would drop below normal (once as low as 97.5), then as they wore off, it would creep back up to around 99.1, so my body temperature has been constantly fluctuating.  I was also experiencing cold sweats, fatigue/lethargy, weakness, shakiness (which I assumed was due to the prednisone taper), lightheadedness when standing up, and a pretty bad headache that lasted about three days.  It was hard to figure out what was simply side-effects from the steroids and pain pills, and what was related to whatever this was.  At first I thought maybe I was just fighting off some bug, but when it hadn't gotten any better (or worse) by Monday, I figured it might be some sort of infection that required attention, and I put a call in to my surgical team.   Not long after this I figured out that for some reason the Norco did a better job of getting rid of the cold sweats and making me feel better than the Tylenol, so I started using it more frequently than the others.

My surgeon ordered a CT scan of my abdomen to make sure nothing was wrong in my surgical site that could be causing infection.  It took a couple days for the paperwork to go through, and I had the scan at my local medical center early Wednesday morning.  By that afternoon, my primary care physician had posted the results on the medical website where I can login to keep in touch with doctors, read test results, request appointments/prescriptions, etc.  (It's actually quite a brilliant site that I use frequently.)  No cause for fever was identified.  My surgeon wanted to see the images herself before making a determination since she is more of an expert on my situation and may be able to see something that my PCP overlooked, so a CD of images was "overnighted" to her on Thursday, but she still didn't receive it on Friday, so I will have to wait through the weekend to hear back from her.

Meanwhile, the pattern of low-grade fever, fatigue, and cold sweats has continued.  I had also called my surgical team again a couple days ago to find out if there are any other steps to take, tests to run, or directions to follow while I continue waiting, but I never heard back from my surgeon.  Whether it was my surgeon or her assistant that was too busy to get back to me, I eventually ended up paging the on-call doctor after hours for some direction.  I had been waiting around with these unchanging symptoms for a week now, and didn't think I could stand waiting through the weekend with things as they were.  Being drenched in sweat, having goose-bumps, feeling too hot, and shivering all at once is totally obnoxious... it got old after the first two days - now after seven days it's downright unbearable.

Left to right: Tramadol, Norco, and Prednisone.
(Generic acetominophen and Advil in the back.)
While I was waiting for that call back, another idea came to me.  What if it wasn't an infection after all?  What if I was actually experiencing withdrawals from prescription narcotic pain pills?  I'd been on various prescription opiates (Tramadol for my UC pain before surgery, Dilaudid in the hospital, Norco after discharge for post-op pain) regularly and solidly for the last three months, and these symptoms started not long after I'd reduced my pain pills to practically nothing.  After a quick Google search, I found that all the symptoms fit.  I discussed this idea with the surgeon who called me back, and she said that it was a definite possibility, but that it sounded even more likely to be withdrawals from the prednisone.  She explained that after surgery our bodies have a higher need for steroids, so the post-op taper process is more fragile, and the withdrawals can be more severe than previous experiences with the same drug.  After some discussion, we agreed that it was likely the combined, intertwining effects of my body trying to juggle recovery from major surgery, withdrawals from steroids, and withdrawals from narcotics all at once.  She told me to bump up my doses of both drugs a bit, hold them steady through the weekend and see how I feel.  If my body stabilizes and my symptoms subside, then start tapering down from both drugs more slowly and carefully than before.  Okay, at least it was something for me to think about and try while I wait to hear back from my own surgeon.

I knew all along that opiate addiction was a strong possibility.  I also knew that because I have a very non-addictive personality, I wouldn't have a problem with the psychological aspect of it.  However, I was not really prepared for this level of physical dependence and withdrawal symptoms, if that is indeed what I am dealing with.  My sister asked if all this made me feel like a druggie.  My response was that although I am somewhat reminded of scenes from movies that feature addicts going through detox, my prescriptions were taken for sound medical reasons, and this is just another phase of the very complex medical process I happen to be in the middle of.

At any rate, is still just a theory at this point; there is no way to know for sure yet what is going on with me, but I do feel better after taking my pills, so at least for now I know that I can keep myself comfortable through the weekend by staying on a steady dose of my prescription drugs.  I will post another update once my doctors and I resolve whatever this is, hopefully sometime next week.

UPDATE (11/11/12):
I have stuck with the steady drug levels and have felt much better since then, though often pretty lethargic.  But no more sweats, chills, or fever.  On Friday (a week after my chat with the on-call surgeon about stabilizing the meds) I went down a small step on both drugs, and so far so good.  I was pretty fatigued but comfortable that Friday and Saturday, but felt much better today (Sunday).  I went for my walk (1.35 miles) and even felt perky enough to mow the lawn afterwards.

UPDATE (11/27/12):
Since then I have been slowly tapering down on both meds, and within the last couple days I am completely off of both.  When I drop down to nothing, I have a bit of returned detox/withdrawal symptoms, but not to the degree of last time.  I am feeling fatigued and lethargic, sleeping a lot and experiencing some chills and very mild cold sweats.  Fever has not yet returned.  I'm hoping these symptoms will go away within the next few days, but I know I will have to go through the whole process again when they put me back on high doses of both drugs at my next surgery in two weeks.  At least I am home recuperating for all of it... I thank the heavens that I do not have to work or take care of any other responsibilities while feeling like this.

Feel free to leave reactions and comments below...
  Previous Post                                                                                                             Next Post