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.

Saturday, January 19, 2013

Transition

  anastamosis = surgically attaching two parts together through either hand-sewn or stapling techniques  
  butt burn = the pain and intense burning sensation of the skin around the anus from the irritation that is caused by the high levels of digestive fluids in the frequent bowel movements after j-pouch surgery  

"If anything can go wrong, it will go wrong."  - Murphy's Law

I'd like to say that when I got home from the hospital, everything finally started going smoothly, and I hit the ground running.  The truth is, though, that I've still been experiencing more complications.  But we'll get to that in a minute.  First, a little celebration.

As soon as my parents drove me home, even though it was January 5th, we celebrated Christmas: I made some hot cocoa and Mom put on some Christmas music while I opened my stocking and all the presents sent to me from from family.

Who doesn't love opening Christmas presents?
Thanks everyone!
A poster for my classroom.... Hehe.  Appropriate, no?



When "Christmas" was over, I took a long-overdue and much-needed shower.  (I hadn't been able to take a full shower since my surgery due to bandages, drains, and PICC line, so this was a luxury.)  Once I was nice and clean, my parents treated me to a belated birthday lunch (my birthday passed while I was in the hospital) where I ate a meal of carbs and fried foods, which my j-pouch handled just fine.  Then, after stopping by the pharmacy, we went grocery shopping to stock my kitchen full of pouch-friendly food before my parents had to hit the road and head home.
All cleaned up and ready
for my first outing sans bag.

Mmmm.... Comfort food.  Happy birthday to me.









It was a very fun day, but by the end of it I was exhausted.  As I started adjusting to life back home, I was VERY happy to have my own bed, my own toilet, my trusty canine best friend by my side, and as many undisturbed hours of sleep as I wanted.

For the most part, my j-pouch has been behaving exactly as I would expect at this stage. Even better, actually, since I can pass gas easily in any position and have had zero anal leakage.  I have complete bowel control and can hold it pretty much as long as I need, same as when I had a healthy colon.  When I gorge myself on Christmas chocolate or have an alcoholic beverage, which both stimulate the digestive tract, then I will go way more often, and it feels more urgent; I will also get the sensation that I have to go even when there is little-to-nothing there, and the frequency and softer stool cause me to get the infamous butt burn, which can be pretty painful.  However, if I stay away from chocolate and alcohol and make sure to include some slowing foods in my diet (bread, pasta, rice, peanut butter, cheese, banana, Metamucil wafer), then things slow way down, and the butt burn disappears pretty quickly.  Regardless of what I eat, though, I'd say my frequency pretty much stays between five and ten times a day, though once it was more than that, and a couple days ago I only had three bowel movements in twenty-four hours.  It's important to keep in mind, though, that almost every time I sit down to pee and relax those muscles, a little comes out of the j-pouch which means I have to count it as a BM.  According to experts, the average healthy person urinates every two to four waking hours, which totals six to eight times a day.  So I'm not actually going to the bathroom any more frequently than an average healthy person.  I know as my j-pouch continues to mature and adapt, the frequency, pressure, and butt burn will all continue to die down over the next several months (even when I eat chocolate, LOL).  I will also be interested to see how things change as I introduce more natural fiber into my diet by eating veggies and whole grains again, which will happen slowly over the next couple weeks. Overall, I'm satisfied with my pouch function at this time.

Okay, now for the additional complications.  A couple days after I got home, I felt really backed up and bloated, like there was gas and food in my belly that just wouldn't pass.  My tummy was uncomfortable and tender to the touch.  When it didn't go away, I started purposefully doing things I knew would help clear me out: walking, heating pad, Gas-X, chocolate, and eventually even herbal laxative tea... Going to the bathroom helped a little bit with the bloated feeling, but nothing really worked.  After four days of going to the bathroom and passing gas but no relief from the bloating or pain, I also noticed that the tender spot on my belly hadn't changed or moved at all, and I started to realize this wasn't just constipation.  It felt like another abscess or fluid build-up, so I called my surgeon's assistant and explained everything.  

They sent me in to my local medical center for a full CT work-up.  I had oral, rectal, and IV contrast.  (Yeah, they still call it "rectal" even though I don't have a rectum.)  In addition to looking for an abscess or whatever was causing the painful bloat, they wanted to check from both the top and bottom for any leaks in my digestive tract that may be the root of the problem.  Well, the CT did not show any leaks or any fluid build-up.  According to the nurse that called me with the results, what the CT did show was inflammation around my Fallopian tube and uterus and a good amount of air trapped in my abdomen where it didn't belong.  This could be potentially harmless or potentially very dangerous depending on the circumstances.  Since it was the end of a Friday when the nurse called me with the results, and since I wasn't having any other symptoms or signs of infection, the plan was to start antibiotics right away to head off infection (one of the potentially dangerous outcomes), and to do a repeat CT in a week to see if there was any change, followed by an appointment with my surgeon.  The hope was that my body might absorb the air and resolve the issue on its own.  Meanwhile, if anything got worse or if I had any sign of infection, I was to go straight to the UCSF emergency room.  Luckily, it never came to that.

After a little research on the topic, I figured that the air may have gotten there from the removal of the drainage tube leaving an open pathway into my abdomen since I was on steroids, which could have prevented healing.  My surgeon agreed that was a possibility until she saw the scans herself.  Yesterday I had my repeat CT, and after she looked at and compared both the scans, she came up with a different scenario.  According to her, the air on my scan from a week ago appears to be not free-floating in my abdomen but actually inside my Fallopian tube and uterus.  After scratching my head for a second, I asked her how in the world that could happen.  She said that she can see the part of my intestine where she removed the stoma and stapled the ends back together (anastamosis), and it happens to be sitting right up against my Fallopian tube.  She figured that from the beginning there was maybe some microscopic leak at the anastamosis site that hasn't been showing up on any of the CT scans.  It's obviously not big enough at this point to leak waste into my abdomen, or we'd see evidence of that - things would be going terribly wrong right now.  But a tiny microscopic leak like what she's suspecting could have been the source or cause of the infected abscess in the hospital as well as the current collection of air.  Apparently, the air could have exited the intestine via the leak and then entered the Fallopian tube via the little "fingers" that are meant to catch the egg as it's released from the ovary.  She said the chances of that happening are like one in two million, and she's only seen it one other time in her career, but that's what the evidence is pointing to.  However, the good news is that the most recent scan shows less inflammation and a significant reduction in the amount of air.  (There is one bubble in my vagina now - apparently it's working its way out, LOL.)  So we're hoping it will just continue to resolve on its own.  The microscopic leak should heal itself as the scar tissue grows around the staples (which could have already happened), and hopefully my body will either push out or absorb whatever air is remaining.  She extended my antibiotics for another three weeks and told me to call and check in two weeks from now.  If my symptoms are gone, they will assume the issue has resolved itself.  If I have any worsening symptoms, or if something doesn't feel right before then, of course I'm to call in again so we can decide a different course of action.

On a pretty unrelated topic but still relevant to my health, my very first CT scan that I had to prepare for my first surgery back in October revealed a small lesion on my right kidney that I was told needed to be followed up on after my surgeries were over.  So last week I scheduled a doctor's appointment for it while I was still on medical leave and before I forgot all about it.  My doctor said it was most likely a harmless cyst, but she sent me for an ultrasound just to double check.  Well, it wasn't a cyst.  It was solid.  According to my doctor this means it's most likely a benign tumor, but there is a chance that it could be cancer.  It needs to be biopsied to know for sure.  So she's sending my records over to a urologist in Sacramento who will either schedule an appointment for me to see him or just tell my doctor what type of biopsy procedure should be done at my local medical center.  I'm thinking most likely the biopsy will involve a very large, CT-guided needle inserted into my abdomen.  Great - more abdominal procedures.

When I heard the news about the tumor, I figuratively threw my hands up in the air and said to myself, "This is EFFING RIDICULOUS!"  (Only I didn't say "effing".)  When it comes to my health, my whole family knows that my body has always played by Murphy's Law, but there is only so much that one person can take.  After remaining positive through an awful disease, immunosuppressants, major surgery, and all the unlikely complications that happened following another surgery that was supposed to be quick and easy, I now have to deal with this??  (Not to mention all the other random health-related issues I've dealt with in my past... This is not my first tumor.)  So I had a short, mopey afternoon of "this isn't fair" and then - true to my nature - I turned it around.  I realized that IF this does turn out to be cancer, I am actually a pretty lucky lady.  If I had never had a health condition that required surgery, I would have never had a CT scan.  And if I had never had a CT scan, I would have never known about the tumor until it somehow became symptomatic... and by that point it would have had to be pretty damn big and probably metastasized.  It would be much more difficult to treat, probably requiring surgery, radiation, and chemo... or it could have potentially been even too late for that to work.  But right now it is small (1.6 cm) and according to my doctor would be very easy to remove if it came to that.  So if the biopsy reveals a worst-case scenario in  this particular situation, it would still be a best-case scenario in that situation.  Capiche?  So we're keeping our fingers crossed, but whatever happens, I know I will come out okay.  I've gotten through everything else; I can get through this, too.  It's what I do.

On a lighter note, I've been starting to feel like too much of a slug after four months of laying around, and I'm out of excuses to remain in bed, so I'm gonna put a little structure to my day starting on Monday:

  1. I'm going to start taking my melatonin at night again to get into a normal sleep cycle and be able to wake up and be more alert and motivated during the day.  More waking hours out of bed!
  2. I am going to eat healthier now that my food restrictions are up.  Veggies, here I come!!  (Oh, how I've missed you!)  Breakfast, lunch, and dinner will be planned out, and no more junk food except planned "cheat days" (calorie cycling).  My body is destroyed right now, and I need to provide it with the right building blocks to get healthy again.  Plus, I have been gaining weight quickly since discharge, and I want to turn the direction of this train around from destination flab-town to destination fit-city.  
  3. I'm going to start each day with some gentle exercise.  (Haven't been doing ANYTHING lately since the air in my uterus has been too uncomfortable/painful when I move, but that's oh-so-slowly letting up.)  I'm going to re-start my gym membership that I froze back in September so I can go to yoga classes and start slow swimming again in addition to walking and some gentle strength-building calisthenics at home.  I'll put together a schedule of alternating exercises for each day.  When I slow-jogged one mile a week ago just to test the waters, I found that I am not just at square one, but somewhere well-before square one, like square negative five, meaning my body is in worse shape than if I'd just been inactive for a year.  My joints, muscles, and cardio were all really tore up by the end of one 13.5-minute mile... It's going to be a good while before I'm ready to run again.  So REHAB here we go!
  4. Will try to do at least one productive thing each day, whether it be an errand, chore, DIY project, art, socializing, writing, shopping, etc.  I want to try out some stuff I've been pinning on Pinterest, so I figure this is the perfect opportunity.
And that's it: sleep, food, exercise, activity.  Of course I will start out really slowly with all of this, but hopefully it will build momentum pretty quickly.  It's been about six weeks since my second surgery, so it's time to start engaging in my life again.

My bedroom door: displaying all the get-well cards and good wishes
 people have been sending me over the last few months.  I am loved.


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Saturday, January 5, 2013

Discharge

Well, today's post will be a bit more positive.  I'm happy to report that things have been going very well, and after twenty-four days here at UCSF Medical Center, I'm finally leaving the hospital!  But here is the update of what has happened in between...

I have been feeling great, eating a lot, digesting, and pooping just fine the last few days.  Trying to keep myself busy with reading, watching Netflix, snoozing, and walking a lot (2.5 - 3.5 miles per day).  We've really just been waiting for my white blood count to get down and stabilize and for the drains on my sides to finish draining the fluid build-up and resolve the infected abscess to make sure I don't go home with an infection or something that could turn septic.  So just a lot of hanging out and waiting lately.




My parents (who have been visiting me almost every day) came in with snacks and sparkling cider to celebrate New Years Eve with me and watch the ball drop at midnight.  We gave an extra bottle of cider to the nurses.


The procedure they took me down for right after my last post (which I originally thought would be a CT scan) the doctors actually call a "tube check."  It's where basically the interventional radiologists (IR) have a live video feed of a low-level X-ray showing on a computer screen so they can see where the drainage tube is in my abdomen.  They can insert a contrast solution through the drainage tube that shows up on the X-ray to see where it goes and discover what the abscess cavity looks like, which tells them if it's shrinking/contracting or if they need to reposition the tube to access the area better.   When they performed the tube check (I was fully sedated this time, thank goodness), they found that both the tubes were a bit clogged, so they replaced both tubes, and they found that the one on the left needed to be repositioned.

After that procedure, my white blood count continued to go down, which is good.  They did another tube check on Wednesday (three days ago), during which they were able to remove the drain on my right since it was done doing its job, and they replaced and repositioned the one on my left again so that it could reach to a different area down in my pelvis where additional fluid had built up.  The next morning my white blood count was down to normal range (for being on steroids, anyway).  The doctors wanted to make sure I could get off antibiotics and still maintain a stable white blood count, so that morning they took me off of the antibiotics and detached me from the IV cart. (Yay!)

My white blood count stayed pretty steady, and the left drain never drained much of anything out of it, so after the nurse flushed it yesterday morning to make sure it wasn't just clogged and still nothing came out, they finally removed it yesterday evening.  I was SOO relieved to have it out of me and especially to not be going home with it in, which they said could have been a possibility.  At that point I was detached from everything except the PICC line that was still in my arm, which they removed this morning before discharge.

I forgot to mention in my previous post that about four or five days after surgery, the doctor took the staples out of my surgical incision where the stoma used to be and replaced it with strips of tape.  I'd heard removing the staples could be painful, but it wasn't at all.  I was told to leave the tape strips there until they fell off, which finally happened yesterday evening.  (It would have happened a lot sooner had I been showering, but I've been sticking to sponge baths due to the drains, dressings, and PICC line.)  So here is a photo of what the incision looks like twenty-three days post-op.  It is two inches long.  (Just for comparison, my larger incision from the first surgery, just below this one, is three inches long.)

Meanwhile, my j-pouch has been adapting and learning to function!  This part is exciting for me.  The first couple days on solid food, I had to strain/bear down a good amount to be able to empty everything out, which ended up causing what I believe was maybe a hemorrhoid.  Either way what I felt for a day or so was an intense burning sensation inside my anal canal every time I had a bowel movement.  The outside skin was fine since I'd been using the baby wipes and barrier ointment provided by the hospital to prevent "butt burn", but it didn't reach inside where this particular burning was.  Well I decided if it was a hemmie, I needed to stop bearing down, which I've heard you're not really supposed to do much with a j-pouch anyway, so I tried that for a day.  Even though I felt like I had to go a bit more frequently since I wasn't able to empty everything out each time, it helped, and the burning sensation disappeared.

The milkshake was amazing.
After that things improved even more, seemingly overnight, and for the past few days I have had a perfectly functioning j-pouch.  I am surprised at how well it works this soon after starting to eat solid food.  I haven't been able to count exactly how many BM's I'm having a day (the nurses erase my tally on the white board every time they record it in the computer), but I would estimate 5-8, which is average for someone with a j-pouch.  I will start another tally when I get home so I can give you a more accurate number on my next post.  I have no pain, no urgency, no leaks whatsoever.  I have complete control and can hold it for as long as I want or need, and I can pass gas easily whenever I need to without risk or worry of passing anything else along with it accidentally.  Of course, this may be due to the fact that I had a lot of practice at that particular skill during my seventeen year stint with ulcerative colitis, but either way I'm happy with the results.  Everything functioned great even after eating the fast food my parents brought in one day and the salted caramel chocolates - so good!  (Keep in mind that even though I was still in the hospital, this was like three weeks post-op, so the majority of the swelling had gone down by then.)  I know there will most likely be a good amount of back and forth during the first few months;  I will have to see how different foods affect how my j-pouch functions, and other issues may still arise down the road, but if it's functioning this well after only a few days of solid food, imagine how it will adapt and mature over the next year.  I am happy and excited about starting a disease-free life, and now that the surgical complications are out of the way, so far I am a very happy j-poucher!

Before moving on, I feel I should pause here and explain something that no one ever shared with me before I had surgery.  Because I am now pooping with completely different equipment, all of the sensations and muscle commands involved are different.  (I discovered this while passing mucous daily in between the surgeries but wanted to see how it compared to passing stool.)  Think about it - this is something I've done multiple times a day for my entire life (that's about 30,000 times) - it's as natural as breathing - and suddenly I'm doing it with a new body part.  It's kind of like trying to brush your teeth with your left hand: the body part functions just fine, and it's doing the exact same job, but it feels very weird.  It's a bit awkward and clumsy at first and will take some practice to get really efficient at it.  Because the muscles and nerve endings around the rectum (where your poop is usually stored before evacuation) are no longer there or connected, I now can't really feel anything before the actual anal canal.  Another j-poucher described it as feeling like someone else doing the work/pooping.  In order to go, instead of flexing the muscles around the rectum, I now have to relax all the muscles around my pelvic floor as much as I can while gently flexing my abdominal muscles.  It takes a little practice to be able to really evacuate everything in there.  Some people have tricks like coughing or standing up and sitting back down.  So if you're going to have surgery, really feel and remember what it feels like to poop before you go in, because you will never feel that sensation again.  I kind of wish I had paid more attention the last time I pooped before surgery... There was a short moment between my surgeries where I did have to grieve this aspect just a tiny bit.

Excited to be leaving.
Anyway, I am so excited to be going home today, but before signing off for today's post, I have to stop here and give a shout out to the nurses and staff on the 5 North wing of UCSF Medical Center at Mount Zion.  After spending over three weeks in the hospital here, I have had many of the nurses on this floor, and almost all of them have been amazing.  They are caring, supportive, and respectful, getting me whatever I required and helping me in any way they could.  I can tell they really care about their patients, and they always listened to my needs.  I went through some pretty rough times while I was here, and they all did what they could to make me as happy and comfortable as possible, which really made a difference in my stay here.  I know they put up with a lot in their line of work and see people at their worst, but they still manage to have a positive attitude and show kindness and attentiveness to the patients in their care.  The doctors pop in and out, but the nurses are really the ones that make a world of difference when it comes to those of us on the receiving end.  So nurses of 5 North, I know some of you will be reading this, and I want to say thank you again for the care and compassion you showed when taking care of me.   <3


My posts from now on will become a little bit less frequent as I get back into life with a j-pouch, but I will continue to post photos of how my scars are healing over the months and updates about how the j-pouch is functioning and maturing as I start back at work and get back into my fitness and athleticism.

Here's to the first day of my new life... Grabbing 2013 by the horns!!!  :-D


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