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.

Sunday, September 30, 2012

Pre-Op... Stuff

  UC = ulcerative colitis     ostomy = short for ileostomy or colostomy     GI = gastrointerologist     BM = bowel movement    

After the surgical consult, they sent me home with three different infomational booklets: one on hospital expectations, policies, accomodations, etc; one on living with an ileostomy; and one on the actual "Ileoanal Reservoir" (or J-Pouch) surgery.  In addition to my reading homework, there are a few other steps to accomplish before I go in for the actual surgery.

First of all, they always want the patient's most recent blood work-up and any other tests that may be helpful (in my case a CT enterogrophy, or for older folks maybe an EKG).  After completing the bloodwork and the CT scan, I also had to set up an appointment with the anesthesiologist.  In my case, since I am otherwise young and healthy, I was able to do it over the phone.  Other people who may be older or have more complex medical situations may require an in-person interview.  This consisted of a list of pretty basic questions regarding my overall health and medical history to make sure that the anesthesiologist is aware of anything that might affect the use and amount of anesthetic drugs during my surgery.

The other required appointment is with the ostomy nurse (sometimes called ileostomy nurse, stoma nurse, or WOCN = wound, ostomy & continence nurse).  This is the person who will be the most helpful as I transition from my diseased colon to an ileostomy and finally to a J-pouch.  She is an expert on all things ostomy.  She knows about all types of stoma complications and issues and how to fix them as well as all the bag equipment varieties and which types work better for which purposes.  She will be the person I would call if I have any issues or questions about my ostomy after I return home.  I had my appointment with the ostomy nurse six days before my scheduled surgery.  In contrast to the stark, matter-of-fact attitude of the surgeon, this woman was warm, friendly, and ready to explain everything about the entire process in detail.  This would be the place to ask all those burning questions having to do with an ileostomy and even the J-pouch procedure.  In my case, I had already researched everything about the process and didn't really have any remaining questions, but I was comforted by the fact that if I had, she would have been more than happy to teach me anything I wanted to know.  Like any good teacher, she came prepared with hand-made charts, diagrams, informational booklets, and realia (teacher lingo for "real, physical objects") for examples of the different types of bags and skin "wafers".  The part I was particularly interested in was seeing how the bag looks and feels in real life.  She showed me one-piece and two-peice models, self-adhesive velcro closures at the bottom vs. clips, both convex and flat wafers, and what the sticky backing feels like.  (It's a soft, tacky substance that gets and stays sticky from your body heat, so it will stick to you pretty well but not other stuff.)

The most important part of this appointment is the marking of the stoma placement.  She took her expertise on what is necessary and functional for a stoma to work properly along with my personal preferences and found the perfect spot for my new stoma.  I told her I wanted it as low and off-to-the side as possible while still remaining functional and practical.  In all the ostomy photos I've seen, the stomas are almost always only a couple inches from the navel and pretty high up, above the pantsline.  I wanted to avoid this if possible, simply for aesthetic purposes - I want my belly button to be center stage of my tummy!  Since I would most likely only end up with the ostomy for about three months, I was more concerned about where the scar will end up after everything is said and done.  To find the right location, she had me lower my pants a bit and then took one of the sample ostomy bags she had with her and stuck in on me, the same way it would go if I were really using it on my stoma.  She had me sit down, lean over, and stand up with it on all while she moved it around a little and tried to get it as low as she could while still functioning correctly.  Once she found the right spot, she marked a large dot with a new surgical marking pen and then gave me the pen so I could freshen up the mark between now and Thursday so it would still be visible on the day of surgery.

I ended up very happy with the placement.  It is low enough that after the ostomy is gone, the scar will be hidden underneath any pants I might wear and most underwear and bikini bottoms (except for those that are extremely low-cut).  This means that the only scars that will be above my pantsline will be a couple of tiny laproscopic holes, which practically disappear after they heal.

One other pre-op step I have added of my own accord is a full ("brazilian") bikini wax.  I have chosen to do this because one of the incisions will be right around my pubic area, which they would have to shave anyway before they cut.  Keeping this area clean and hair-free during healing as well as dealing with a catheter post-op and possibly not being able to bathe or wipe properly for a few days after surgery led me to think the whole process would just be easier and smoother (no pun intended) if I were hair-free for a few weeks.  I will let you all know how helpful this added step seems to be once I'm on the other end of things.  One thing to keep in mind, though, is that if you are going to do this before surgery, try to schedule it several days to a week before the operation.  Since waxing often tends to leave a little irritation or possible tiny infection that normally would be barely noticeable, it could raise the liklihood of an infection in the surgical site.  I am having mine done today (four days before surgery), but I would have gotten it done yesterday or the day before if I could have.  I will know next time to schedule in advance.

The only other prep I have between now and the actual surgery is flushing out the entire GI tract.  They can't perform surgery and cut open a colon that is full of waste, so the day before my surgery I will not be able to eat any solid food and will have to drink about a gallon of laxative.  I have done this many times before since it is the same process to clean out the colon for a colonoscopy (I've had eight over the years), but it is unpleasant every time.  You can imagine what that would look like on someone who already has GI issues and diarrhea... It's a pretty ugly process and can be quite taxing on the body.  By the time I check in for surgery the next morning I will be extremely weak and pretty much worthless, so it's a good thing my parents are coming into town for the occasion; they will be there to help drive me to and check me in to the hospital and make sure everything is taken care of.

So that's pretty much it.  Once I arrive at the hospital on Thursday morning, I will pretty much go straight in to surgery prep, so my next blog post will most likely be after I come out of surgery.  Wish me luck!!

T H I S    W E E K ' S    H E A L T H    L O G    

My Condition: Mild/moderate ulcerative colitis since 1995, severe pancolitis since 2011.

Current Symptoms: Frequent severe abdominal pain, lots of blood at every BM, 8-15+ (mostly liquid) BM's per day, weakness, fatigue, nausea, loss of appetite, weight loss, occasional dizziness or light-headedness.  (At this point some of these symptoms are simply from the malnutrition, dehydration, and constant blood loss.)

Prescription Meds:  Tramadol (50mgs every 8hrs for pain), Asacol HD (4800mgs), can no longer retain enemas or suppositories.  Prescription bowel prep (i.e. mega-laxative) to occur the day before I'm admitted to the hospital.

Side-Effects:  None.  (Tramadol "loopy" or "floaty" side-effects have died off since I've gained a tolerance over the last few weeks.)

Supplements: Omega-3, calcium, vitamin D, vitamin C, biotin, B-complex, vitamin A, vitamin E, multi-vitamin.  (A few vitamins added in attempts to prevent additional hair loss, a common occurance with anesthesia.)

Diet:  No tough meat, wheat, dairy, beans, nuts, seeds, raw veggies.  Nothing too processed or difficult to digest.  Mostly eating fish, eggs, soy/tofu, cooked veggies, rice, potatoes, gluten-free products, corn chips/tortillas, peanut-butter, jelly, applesauce, condiments.  Favorite meal right now: sushi.

Exercise:  None - too weak.

Stats: Height 5'7", weight 135 lbs, body fat 15%

Have Tried:  Humira, Methotrexate, Imuran, Lialda, Endocort, Prednisone (dependent), Canasa, Cortico-foam, probiotics, L-glutamine, licorice, various other supplements, Specific Carbohydrate Diet, FODMAP diet, various other dietary changes.

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  1. Good luck! I can't wait to hear how the surgery went. Keep us posted!

  2. Day four post-op: everything went wonderfully with the surgery and am making good progress with recovery, though still dealing with quite a bit of pain and discomfort from the surgery, which is to be expected. I will get online soon and make a full post about my first week post-op, but so far things are going very well.


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