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I finally wore out my welcome

23 Dec

After a mere 19 days in the hospital, the doctors finally decided enough was enough.  I was released on Monday evening and the taste of outside freedom was the best Christmas present I could ask for.

A bit more on the surgery…

In my mom’s previous update, she noted the doctors were able reroute some plumbing to enable proper flow through the digestive system.  Prior to the operation, they had some speculations on what was causing the blockage, such as inflamed tissue (a common side effect from radiation) or fecal build-up; this is not what they found, however. Instead they discovered another tumor that had begun to grow in the small intestines, and it had finally reached a problematic size.  While this was devastating news, it wasn’t all that surprising. Over the past few months we’ve continued to monitor my CEA level and it had been on the rise.  This additional tumor now helped explain why.

Surgery recovery…

After surgery, the next big milestone I had to accomplish was to actually prove my bowels were working again. I asked the doctors how I could speed up the process of having a bowel movement. Walk, they said. For some people, it only takes a day for their system to be restored.  My bowels, on the other hand, continued to lie dormant for eight days as I walked lap after lap around the hospital corridors.  It was only on that eighth day that they decided to wake up…and I guarantee you’ve never seen a more excited person on the toilet than at that moment.  If it hadn’t been 4:30a.m. I would have started calling everyone I knew to share the good news.  But the good news was short lived, as other issues began to arise.  After a few days, my surgical wound – a 10″ vertical scar down my abdomen held together by 17 staples – began to show initial signs of infection.  The doctors removed 13 of the staples to clear out the infection, which left me with a gaping wound.  They cannot sew up an incision once it has been opened, therefore I had to have a wound-vac put on – a device that provides negative pressure wound therapy via a vacuum. I had to wear one of these last year after my surgical incision became infected and they had to re-open it.  Depending on how fast the wound heals, I could have to wear this device for up to a month…ugh.

Home sweet home…

While I still felt very weak and was experiencing a lot of pain, I was so excited when I was told I could go home earlier this week.  I quickly found that the recovery process sped up when I was in my own surroundings.  Within 24 hours I was able to decrease the amount of pain medication I was taking and each day I’ve noticed my strength and mobility improve.  I still have a good 4-5 weeks of recovery ahead of me, but I am well enough to be able to enjoy the upcoming festivities and celebrate Christmas comfortably.

What’s next?…

With the discovery of this new tumor, plus the existing ones on the liver and lungs, and any additional ones we may not know about, it’s obvious we have our work cut out for us.  As Nick says ‘We’re running a marathon and thought we were at mile 25, and then realized we are only at mile 3.’  We clearly have our work cut out for us.  We do have a treatment plan in place and I will share more about that in my next post.  In the mean time, enjoy the holidays with your families and know I am eternally grateful for all the love and support that continues to come our way!

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Initial surgery update

7 Dec

Now that Emily has assigned me to blog duty, I want to update everyone that Emily’s surgery went well.  The doctors were able to reroute her “pipes” in order to prevent any future blockages.  She is now back in her room and resting comfortably.  Her recovery needs to be swift…..Nick has plans for rock climbing this weekend!

Please keep the prayers coming; we appreciate every one.

Toni

Unexpected surgery

6 Dec

For the past week I’ve been playing a game called Waiting for the Bowel Movement.  I can assure you this is not a fun game and I hope I’m never a contestant again after I get done with this round.  It all started last Wednesday when I checked into the ER  at Barnes Jewish Hospital with unbearable abdominal cramping.  Several hours later I was admitted for supervision and some tests, yet by the end of the next day it was clear my bowels were not moving.  I’ve now spent six days in the hospital with no food or water (only IV drip) and countless X-rays, CT scans, and blood draws…and we’ve now arrived at the last resort – surgery.

Today at 4:00 p.m. I’ll have the culprit, an inflamed portion of my small bowel, surgically removed.  This is a similar surgery to the one I had last year (when the tumor portion of the colon/rectum was removed), but I’m told this procedure will be less complicated and quicker (1.5 – 2 hours in duration). Unfortunately it’s difficult to give any more details than this because much of it depends on what the doctors actually see when they get in there.  Recovery time is estimated at one week in the hospital followed by four weeks at home.  Obviously I’m hoping to speed this up so I can be in tip-top shape for Santa later this month…call it my Christmas wish!

While I never wanted to see this result in surgery, I’m excited at the thought of there being some relief in sight (after the recovery, of course). So, please send prayers and good vibes this way and check back later for updates…my mom will be on blog duty.

No laughing matter

8 Jun

I’ve been home from the hospital for nine days now and am happy to report that recovery is going well. In addition to sleeping at least ten hours each night, I nap anywhere from 2-4 hours everyday.  Probably the hardest part of recovery is the inability to utilize my abdominal muscles.  It’s not that I’m purposely trying to craft some chizzled abs for summer, however one doesn’t realize just how often you rely on your stomach muscles to get through the day.  Sitting down and standing up has become a tedious effort.  Sneezing is the most painful thing in the world. And laughing is anything but fun; in fact, it’s rather excruciating.

To help the wound in my stomach heal as quickly and efficiently as possible I have a home health care nurse that comes to the house everyday to pack and redress the opening in my stomach.  Basically, an open wound heals quicker when it is ‘touching’ something, so 7-9 inches of shoestring gauze, pre-soaked in iodine solution, is inserted into the 2 cm deep hole.  This is referred to as ‘wet to dry’ packing because the gauze is wet when inserted, then dries while inside the wound and is removed the next day. To be honest, I haven’t noticed a huge transformation in how the surgical point looks now compared to the day of surgery, but the nurses assure me it is healing nicely with no sign of infection.

Speaking of transformations, my husband has turned into a new person over the past few weeks, becoming a gourmet chef and household caretaker right before my eyes.  True story: a month ago Nick called me because he had gotten lost on the way to the grocery store that is all of 3 miles from our house that we’ve now lived in for 4.5 years.  I’ll be honest, I pretty gave up any remaining hopes of him becoming a skilled homemaker at that point.  However he has since turned over a new leaf and become a handicap patient’s dream, preparing freshly cooked meals and cleaning the house from top to bottom!  Now only if he would stop trying to prove how funny he is by making me laugh…

Pipe dreams

31 May

Well as Jane reported, everything went well with the surgery and I left the hospital yesterday afternoon, exactly 72 hours after the procedure. I began eating solid foods the morning following the surgery and the doctors predicted I should start passing gas later that afternoon, and should have my first bowel movement the next day.  I was right on schedule with everything and have never been so excited to use the restroom and test out my newly restored plumbing.  I have several friends who are in the process of potty-training their children, and I felt just as elated as they are when praising their child’s first excrement…maybe even more so!

Getting rid of my bag has been the greatest feeling in the world, however there have been several times where I’ve experienced ‘phantom leaks’ – the sensation of my bag leaking, even though it’s not there any more.  The area on my stomach where my stoma was protruding is now a hole about the size of a dime.  Before going into surgery, the doctors gave me the option of having the hole closed completely, which would heal relatively quickly but leave a significant scar. Or, they could leave a small opening when closing the wound in order to let it heal on its own from the inside out, resulting in a longer healing time but less scar tissue.  I opted for the latter.  The resulting wound actually looks like a bullet hole.  I joked with my nurses as they were changing the bandages, “you should have seen the other guy!

Today was my first full day home, and I slept most of the day.  After my horrible experience coming off pain killers following my previous surgery, I vowed I would never go through something like that again. I’m hardly on any pain meds at all; I would prefer some minor pain and cramping any day over the grueling detox process of the pain killers.

While everything has gone well so far, I know I still have a ways to go before my bodily functions can even remotely be described as normal, and all the wounds heal.  Thanks to everyone sending their love, prayers and support these past few days, as well as to all the visitors I had.  While in the hospital, the doctors encouraged as much walking and activity as possible.  During one of my many strolls through the corridors, I found myself hoping that the next time I’m a patient in the hospital is when I’m ready to deliver a child…not a moment before then.  And a new goal is set.

No More Sack Attacks

27 May

I’m glad to be designated to blog duty to report some much-anticipated news…the surgery went off without a hitch! I was at work all day, so much of what you’re reading is what has been relayed to me.

The surgery in it’s entirety was about an hour and a half long procedure and included a little more than reversing the ileostomy.  Dr. Browder, Em’s surgeon, was prepared to essentially blast or cauterize any cancerous lesions she could see on the liver.  Fortunately, she didn’t have to put her light saber (or whatever it is they use) to use because she couldn’t see any lesions to attack!  Given the position of the liver and surrounding organs, however, she was only able to see about 50% of it.  If there are any lesions on the top and/or back side of the liver, they wouldn’t have been able to be burned during this surgery simply because they are inaccessible from the location Dr. Browder was working on.  We’ll talk about that another time.

Once Em came out of surgery Nick met her in the post-surgery recovery area while they waited for a room to be assigned.  In true Emily fashion, her first words to Nick were (while still being groggy from the anesthesia), “So how are my double-D’s?”

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I got here shortly after 6:00 and the nurse was trying to control Em’s pain and administer correct doses of pain killers.  She’s comfortable now, and was slightly drowsy…until her red Popsicle arrived.  Last fall, she was on a strict diet of water, ice and Popsicles for quite awhile, but this time around that diet will only last for the duration of the day.

Nick and I grabbed a bite to eat at a little Louisiana kitchen down the street called Lola’s while Em snoozed for a while.  The place was quaint and felt like we were in New Orleans…even though neither of us have ever been there to compare it with.  Anyway, there was a live band playing some classic Southern music and a little Stevie Wonder (one of my personal faves) and the music, as good as it was, was so loud that we couldn’t hear each other talk.  I said to myself, “For once!  There’s something that keeps my brother-in-law’s mouth shut!”, because if you know Nick, you know how much he likes to talk.  He knows I’m teasing, and he knows how grateful we all are that he’s taking such good care of Em and is there at her every beck and call.

Anyway, after 174 days of carrying an unpleasant accessory/annoying apparatus, my sister is finally ileosotomy-free, looking forward to a future of no more sack attacks!

Until next time, folks!

So long, stoma

27 May

The day has finally arrived…tomorrow I FINALLY get my ileostomy closed!  While some might be apprehensive about an upcoming surgery, I am giddy with excitement.  What was initially set to be a 4-6 week inconvenience has turned into a 29 week nightmare. I think most would agree I’ve maintained an upbeat attitude throughout this entire process, however I have definitely struggled to have a positive outlook when it comes to my stoma and ileostomy. Perhaps my outlook may have been different if I knew it would be a permanent fixture on my body, as some people have; however because I knew this would be temporary, I’ve been finding every reason to be annoyed with it. Not only has my bag resulted in unacceptable tan lines this spring, it has also been the cause of numerous trips home from the office in the middle of the day due to leakage…ugh. Well, in 12 hours from now, the process of closing the ileostomy and reattaching my small intestine to make a complete digestive track will be well underway.  The surgery is scheduled for 1pm Pacific and should last about an hour.  After that, it’s estimated I’ll spend the next 2-5 days in the hospital before being released.

Tonight Nick and I went out to celebrate a ‘Sans Stoma’ dinner…a nice hearty meal before the clock reaches midnight and I can no longer have any food or drink.  Of course, my bag started leaking towards the end of dinner and we rushed home to change it.  As I showered and replaced it with a new one, I took one final look at the two ends of the small intestine protruding through my stomach in hopes of never having to see it again (the next time my ostomy bag will be removed is once I’m finally under anesthesia). Nick will be at the hospital with me during the procedure, and Jane will be on blog duty afterwards.  As usual, I’m just asking for your thoughts and prayers as we get through this next step. C’est la vie, stoma!