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

Surgical Consult


J-Pouch - An internal storage reservoir or pouch (shaped like a J) that is created out of part of the small intestine and takes the place of the rectum, which has been removed along with the colon.  Technically called an ileoanal reservoir.

End-Ileostomy - When the end of the lower part of the small intestine (ileum) is attached to an opening in the abdominal wall, creating a hole or stoma through which waste will exit.  A bag is attached to the side of the abdomen to catch the waste as it comes out.  (Many people mistakenly call this a "colostomy", which would in fact be if part of the colon had been used to create the stoma.  This is impossible if the person no longer has a colon.)

Loop-Ileostomy - Similar to an end-ileostomy, but the end of the small intestine is already in use down below in the newly-created J-pouch (or in other cases attached to a functioning colon), so a small "loop" of small intestine a little bit higher up is pulled through the opening in the abdominal wall and used to create the stoma.  In this case, there are actually two holes in the stoma: one where the waste comes out, and the other that leads down to the J-pouch or colon.

  UC = ulcerative colitis       BM = bowel movement       GI = gastrointerologist  


My surgery is in four days, and shit is getting real.  Here is where I will start writing about the process that is involved with surgery: before, during, and after, so that if anyone is considering an ileostomy or a j-pouch, this might help present a little more info to go on and may even bring a bit of comfort to those who might be stressed about it.  I know reading blogs of others helped me when I was making my decision, so I'm just trying to pay it forward.  The first step in the whole process is a surgical consult, which is what this particular post is about.

When I went in to meet my surgeon, she reminded me a little bit of Christina Yang (from Grey's Anatomy).  She is in the top of her field and recognized as one of the best colorectal surgeons in the nation, but bedside manor is not exactly her strong suit.  She did a fair job of explaining my situation and the plan for surgery, though very breifly and matter-of-factly.   (It helped a LOT that I'd done my research before-hand and knew all the ins and outs of the ileostomy and j-pouch process.)  However, she seemed a bit impatient when she saw my list of questions and kind of breezed over them as quickly as possible.  Her attitude was one of "This is how it's done, so this is how we're going to do it."  She didn't really seem to care much what I wanted or thought about anything, though we both knew I was there because I wanted and needed this surgery.

I'm not complaining, though.  If I had a choice between Christina Yang, who is an *expert* at what she does, and April Kepner who is just nice and sweet, I would choose Christina Yang any day.  What I'm saying is that it doesn't really matter if she has the greatest people skills, as long as she is the best surgeon I can get.

What I found out at the consult is that the plan for my surgery is not necessarily what I thought it would be.  The very first thing she addressed was whether I'd ever had any procedure to rule out Crohn's disease.  Since I hadn't, this was her first priority.  I've never shown any indication or had any reason to believe that I had Crohn's disease instead of UC, but this type of misdiagnosis is not uncommon, and as she reminded me, it's her job to make sure she can rule it out as best she can before she goes in for surgery.  Since the medicinal treatments for both diseases are pretty much identical, it wasn't that imperative up until now.  However, if I do happen to have Crohn's, the surgical plan would look much different; it would basically just be a permanent end-ileostomy.  (In other words, a poop bag on my side for the rest of my life.)  When she said this, I had to take a deep breath and remind myself to stay calm.  So that afternoon, I was scheduled for a CT enterography, or basically a scan of my small intestine.  (It's now over a week later, and I still haven't heard anything back about the results of this scan.)

As long as she sees no indication of Crohn's on the scan AND with her own eyes when she goes in surgically, then we would move forward with a plan for J-pouch construction... but the steps would still look different than what I was expecting.  If I was very healthy and could heal up well post-op, then she would go in and remove the entire colon as well as create the J-pouch and a temporary loop ileostomy during surgery #1, with the "take-down" (removing the ileostomy and connecting the J-pouch) being a few months later in surgery #2.  This is what I thought would be happening with me.  However, the longer I waited for this surgical consult, the sicker I got, so now my health is probably not stable enough to handle that plan.  The final decision will depend on the results of the bloodwork that was also ordered that afternoon, and again what she sees with her own eyes when she goes in for surgery.  From what she could tell at this point, though, chances are if they created a J-pouch now, my body would not be healthy enough or have the right levels of proteins, etc. in my blood to be able to heal the pouch, and I would end up with complications.  So instead, the plan would be to just completely remove the colon (while leaving the rectum in tact) and create a temporary end-ileostomy.  People with my condition tend to regain their health very quickly once this procedure is done because they are finally recieving proper nutrition, so three months down the road when my health has returned and my blood levels all look good, then she would go in to create the J-pouch during surgery #2.  If at this point my health is excellent, the surgery goes perfectly, and there is no leak in the J-pouch, then she could potentially hook it up for permanent use right there in surgery #2 and get rid of the ileostomy.  So I would still end up with a functional J-pouch within two surgeries.  However, if anything is not quite perfect or if there is a small leak in the J-pouch, then she would change the end-ileostomy to a temporary loop-ileostomy and let the J-pouch heal before it gets used.  We would then go in for the take-down in a third surgery a few months later.

So basically there are four possible surgical plans we could follow, and I might not even know the plan until I wake up from my first surgery.  This is a little bit unsettling, but I would much rather her wait and have all the necessary information to go on and be able to make a decision like that mid-surgery if she has to rather than make a plan that could potentially be flawed.  So at this point I am just keeping my fingers crossed and remaining hopeful.

Towards the end of the appointment is when I presented her with my list of questions.  I knew that some of the questions on my list were no longer applicable after the explanation she had just given, but I handed her the list anyway and just let her go through the questions one at a time.  The answers are paraphrased in my own words since I was taking abbreviated notes on her answers, but the gist of everything is there.  I have included the questions and answers below in case anyone might be wondering the same things.

  1. How many of these J-pouch surgeries have you done?  Oh, I’m not sure, let’s see… 2-4 per month for…. How long have I been doing this?
  2. Why isn't S or W pouch more popular?  (Or are they popular and just all fall under the generic J-pouch term?)  The reservoirs created are too big, and patients were having trouble fully evacuating, which caused problems, so about a decade ago they stopped doing them.
  3. Will we be doing a 2-step process?  (Surgery one: remove colon & build j-pouch.  Surgery two: take-down.)  Assuming everything heals on schedule, what is your usual/preferred surgical timeline between surgeries: 2, 3, 4 months?  Longer?  It depends on what we find, how healthy you are, and how well the surgery goes.  3 months in between surgeries.
  4. Do you remove part of the ileum as well?  Where exactly (both top and bottom) do you make the cuts to remove the colon?  It depends on what is inflamed. We would cut right up to the ileum, but we can take out a small amount of the ileum if we have to.  The bottom cut would be right above the anus and sphincter.
  5. I'll be having a loop ileostomy between surgeries, correct?  I've seen diagrams of a loop ileostomy before, but can you give me a little more detail on how exactly it works?  The J-pouch is connected from the beginning, just that waste is being re-routed through the loop-ileo, right?  I've heard that occasionally food can slip through and make it all the way through the j-pouch, and that this is normal....?   It depends on which route we end up going with your surgeries.  You could end up with an end-ileostomy if we don’t create the j-pouch on the first surgery.  You can get more details on ileostomies from our ileostomy nurse.
  6. I know surgery # 1 will most likely be 5 incisions: one larger opening right above the pelvic area where the colon comes out, one lap-hole that also serves as stoma incision, and three additional lap-holes.  What about surgery #2?  It just reconnects the loop-ileo, right?  How many incisions?  I heard it's not very invasive....  It all depends on which process we end up using.  Surgery one would only be four incisions if we don’t end up building the j-pouch then, and surgery two would in that case be more invasive.
  7. I assume you would do rectal wall scraping for this surgery, leaving the rectal muscles in tact?  What part of the new plumbing will ultimately fall within that rectal wall/cup?  The anus and sphincter muscles are left in place, and the entire rectum is removed.  Nothing of the rectum is left. 
  8. How much can the new J-pouch hold?  When it fills up, is that when I will feel the need to go?  Boy, that’s a good question – I really don’t know.  When the patient feels the urge to go, that’s when you go!
  9. Will my tummy appear slightly flatter without a colon?  No, probably not.  [I can not imagine that you could remove one of the largest organs in the abdomen - one that is five to six feet long - without at least minimal flattening of the tummy, but I guess we'll see after the fact.]
  10. What percentage of patients do you follow up with through/after the healing process and for how long?  (i.e. How good of an idea would you have of their post-op complications and issues?)  The nurses generally follow up with post-op issues.
  11. Possible post-op issues/complications I've read about:  butt-burn, gas, anal leakage, painful intercourse, dehydration, pouchitis, frequency, blockages, fistulas, extended recovery time.  Am I missing anything?  How likely is it (after the initial two-three month healing period) that some of these issues will become problematic or chronic?  Yup, you’ve got it.  We generally stop getting calls about post-op issues around the three-month mark.  There would be possible pouchitis.  Scar tissue can sometimes cause blockages.  About 10% per decade become problematic.
  12. How long after surgery will I need a lot of extra help at home?  (When will I be able to start doing a lot of things for myself?)  Roughly how long should I expect to be out of work alltogether?  Do you expect that I will go back to work in between the two surgeries, or can we get it all done in one straight shot?  Help one week after you go home would be nice, but it’s not absolutely necessary.  By the time you are discharged from the hospital you will be able to get up and around, go up and down stairs, dress yourself, etc.  Recovery time before returning to work is six weeks.
  13. After all healing and adjusting is done (which I know can take up to a year) what are the end-result differences from functioning with a healthy colon?  I am aware of the more frequent (5-8/day) and loose BM's and possibly slightly higher risk of dehydration.  Anything else?  Any food restrictions?  Nope, that’s pretty much it.  Food restrictions come down to personal preference.  There are some foods that might make you go more or less frequently, and some people who like more control over their bowel movements and want things more predictable choose to restrict their diet more.  Others say they eat whatever they want.
  14. Will my period affect the J-pouch or cause any difficulties?  (Cramping, etc?)  It shouldn’t.
  15. What are the chances that complications could cause pouch failure and require permanent ileosotomy?  If you end up having Crohn’s disease then we would do a permanent ileostomy.  Otherwise chances of pouch failure or complications ending up in a permanent ileostomy are around 10%.
  16. I know that with any major surgery involving general anesthesia, there is a very slight risk of death.  What is the actual percentage of people who die during this type of surgery?  That is correct.  You can talk to the anesthesiologist about the details at your appointment with him.
  17. How soon after surgery #1 will I be able to eat pizza, alcohol, etc?  You’ll be on a low-residue diet for about six weeks.  After that you can re-introduce foods at your own pace.  We don’t recommend drinking alcohol while on pain meds, but as soon as your off of them you should be able to drink without any problem.
  18. Are there any other steps I need to be aware of or schedule between now and checking in for surgery?  Is there anything I need to do to prepare  (exercises, bowel prep, etc.)?  What about meds between now and then - should I stay on the Humira or off all immunosuppressants before surgery?  Start prednisone to try to get things more under control before then?  (Would rather avoid it if possible.)  Do I need a round of antibiotics or anything?  You’ll meet with the anesthesiologist to go over detailed information he needs to know in order to get your drug levels right.  You’ll also meet with the ileostomy nurse to mark the spot where your stoma will go.  We’ll give you a round of antibiotics and a round of steroids once you’re checked in with us, but you don’t need any additional antibiotics or anything.  [In the informational booklet it said I could talk to the PREPARE nurse before my surgery about what meds to stay on.  She ended up telling me to stay on everything except the Humira, Methotrexate, and Vitamin E up until the day of surgery.  The morning of surgery I am to take nothing but my birth control pill, acid reflux pill, and pain pill.]
  19. Can I get one medical leave doctor's note today that will last me through the whole process? (Separate notes = separate paperwork and approval processes for both leave requests and financial coverage purposes.)  Talk to my assistant, Stephanie.  She can get you a doctor’s note.  [The doctor’s note I got said I would be out until six weeks after the surgery, at which time I would be able to return to work, and then that I would require another surgery three months later around the second week of January.]
  20. How soon can I schedule surgery?!?!  (The sooner the better!)  We can schedule that today!  [Surgery was scheduled for October 4th, which is perfect: not too long of a wait, but enough time for my parents to make travel arrangements and for me to get tests done, make my additional pre-op appointments, and wrap my head around the fact that this is really happening.]

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:  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.

Supplements: L-Glutamine, 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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