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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9 comments:

  1. You rock! Thank you for reminding us that you are braver than you believe, stronger than you seem, smarter than you think, and twice as beautiful as you ever imagined.....
    -GP

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    Replies
    1. Wow, thank you for such kind words. <3

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  2. Thank you for sharing this blog. I have UC and find it be very realistic and helpful. Hoping for a great recovery and outcome w/ all of the rest of the new issues. Life always manages to throw us a curve. You have a great positive attitude.
    B

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    1. Thanks for the support, B. It looks like the air has resolved on its own, as the bloat and stomach pain seem to be pretty much gone now, and I have an appointment with the urologist on February 4th, so we'll see how that goes. I'll continue to keep you all posted.

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  3. Head up, heart strong! You are doing great!

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  4. Came across your blog today after I visited j-pouch.org for the first time. I'm a 26-year-old male and a teacher as well. It appears we had our takedowns around a similar time last month (mine was Dec. 14). I look forward to reading your updates as we progress and heal.

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    1. I've been following your blog and your posts on Healing Well for quite sometime now and I wanted to thank you for sharing all your experiences in a straight forward, intelligent way. You are a brave girl who certainly seems to have all the right tools for "getting on with life". But a huge factor in this seems to be your supportive family. I'll continue to follow your postings and keep you in my thoughts and prayers.

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    2. Thanks for the support, Donna and Jeff! :-)

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  5. I really needed this.

    Thanks for being so brave.

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