The Bowel Resection is Coming!

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The red circle is the approximate area where my Endo is

If you’re one of my dedicated readers, you’ll remember that I had my third Endometriosis excision surgery on July 18th of this year.  You may remember that during that surgery it was discovered that I had a few big ol’ chunky Endo lesions on my bowels (where my small intestine and large intestine meet) that couldn’t be superficially removed.  A colo-rectal surgeon was brought into my surgery and advised that a bowel resection should take place.

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The only problems?

  1. I hadn’t prepped for a bowel resection (oh man, it’s a whole process for the few days leading up to surgery);
  2. The colo-rectal surgeon wasn’t in my insurance network.

The plan?  That surgeon was going to apply to become a member of my network and I’d have my bowel surgery with him as soon as everything was legit.  I met with the colo-rectal surgeon on August 8th for a consultation (oddly enough covered by my insurance since he poked his head into my surgery) and had a discussion of our future plans.

I was told in August that the network acceptance process could take anywhere from one to three months.  So, I sat patiently…for a while.

A month passed.  Then I called my insurance company to see if there was anything they needed from me to speed along the process.  Nope.  Then I called my colo-rectal surgeon’s office to ask the same question.  Nope.  Big fat nopes all the way around.

So I waited another month and then googled my medical group assigned by my insurance company.  On their webpage was the name and telephone number of the Director of Networking – the person to whom inquiries were to be made if you were a physician looking to join the medical group.

So what did I do? I called and left a voicemail message.  A week later, I left a second message.  And a week after that, I left a message with her secretary.

The day I left my third message…she called me back. The Director! I don’t know what I expected, but certainly not what happened next.

She apologized for not calling me back sooner but stated she was having my medical history and records pulled to review.  She found that there was no mention of any pending referral or need for a bowel resection; which wasn’t unheard of since the surgeon wasn’t (yet) an in-network physician.  BUT Dr. Schutzel (my soon-to-be-colo-rectal surgeon) likely wouldn’t be approved for another three months. Early 2019!  I wanted to cry.

I briefly filled her in. Well, that’s a flat-out lie – you know I can’t do anything “briefly.” I mean, look at this blog entry already!  Anyway…she heard me out. All of it.  And offered a suggestion:  have my gyno-surgeon put together a written request explaining my need for a bowel resection and why we wanted it to be this particular out-of-network surgeon (rather than one of the four already in-network).  Then needed to tack on a copy of my July op report, and the Directory may…and I stress the word may…be able to get a one-time-only approval to have the out-of-network (aka yet-to-be-approved) surgeon covered by my insurance to do my surgery.

I gushed my appreciation and thank yous to her and hopped on the phone with my gyno’s office.  They prepped the letter the next day and sent it off!  A few days later: *abracadabra* I get a phone call (which I missed) and listened to in my voicemail.

It was the Director of Marketing…calling me after hours to let me know that the request had been APPROVED and the next step was to coordinate the surgery date!

OMGOMGOMG

She did it!! We did it! But I never would have known it was possible if it weren’t for her taking the time to review my records, listen to my tale, and offer the suggestion!

Literally less than a week from the day we spoke to the day she called to let me know it was approved!  I’m so grateful to her and my gyno’s office!

The following morning, I called the colo-rectal surgeon’s office to see if they needed any information from me.  By lunchtime the same day…everything was all set up:

My bowel resection is scheduled for Monday, November 26, 2018, at 7:15 in the morning!

And to make things even better?

  • It will be a robotic-assisted laparoscopy, using the DaVinci system (which is what’s been used for my three prior laparoscopies); Aaaaaaaaaaaaaaaaaaaaaaannnnnnnd…
  • Dr. Kurtulus, my Endometriosis excision surgeon (and gyno and incredible human being) will be scrubbed in and at-the-ready to take a peek under the hood to look to see how I’m doing since my July surgery! And to excise any Endo they may spot along the way!

The double-whammy!!

I’m so comforted by the fact that my medical care team fought for this to be approved and scheduled so quickly.  But the super-duper comforting thought?  Dr. Kurtulus, my gyno and my surgeon, made himself available (and insisted on being present) for my colo-rectal surgery.  And influenced the decision for the surgery to be robotic-assisted.

And…this entire endeavor is a huge reminder on why we should be persistent and self-advocate.

Now here’s my question to you gals and guys:  If you’ve ever had a bowel resection, do you have any tips for surgery prep, recovery, or diet?  I have my pre-op packet and I’m sure I’ll receive a whole slew of post-op instructions…but I also like to hear your experiences and suggestions.   If so, drop me a comment below! Please!!

I’m so excited. So ready.  So appreciative!

 

 

July 2018 Surgery Recovery

Lisa Howard - Resilience
Dr. Mel Kurtulus and I before heading in. Photo courtesy of Brandy Sebastian https://www.brandysebastian.com/

As you may know, I like to take extensive notes during my recovery from my Endo surgeries. This helps me better be prepared in case I have another one – just to get a sense of what was normal and what I can expect next time. And who knows – it may help you…or someone you know.

A good friend of mine, Brandie, typed up my chicken-scratch notes. (Thank you BRANDIE!) They can be read here. BUT, the “cliff notes” version is below:

DAY ONE (July 18, 2018, took 1 Percocet, 1 Zofran, 2 Gas-X): We got home from the hospital around 7:00 p.m. I don’t remember any of the ride home, which is probably good because it was freeway rush hour and probably wasn’t very pleasant. The first thing I did inside was pop a throat lozenge. My poor throat was sooore and tender. Then had a bowl of bone broth. My lower stomach pain was a 3 out of 10, and my belly button incision pain was a 5 out of 10.

At around 8pm, I tried to sit down for the first time. That tell-tale shoulder pain began to creep up with a vengeance (7 out of 10) and I only sat for 3 minutes. Well, that was a waste. I needed help getting up and down. I knew I’d have to sit again or lay down…but not yet. I popped a Percocet, a Zofran, and a Gas-X.

By 8:30, I had my first pee since I got home. It hurt soooooo much (9/10), but I figured that pain was likely because my bits were still tender from the catheter. By 9pm, I tried sitting on the couch again: no luck. Shoulder pain was a 9/10 and gave up and walked for the next 20 minutes. Then tried to lay down (propped up on pillows), but the shoulder pain flew back up to a 9 out of 10. Did a lot of walking and breathing. By this time, my incision pain was a 2/10 and my lower back pain was a 1/10. I just wanted to sleep, though…

By 9:35, we tried laying down again propped up by even more pillows. The discomfort was minimal. By 10:15pm, I was awake and had to walk around for an hour. I had to pee before going back to bed (again, urination pain 9/10), then I was overcome by nausea. Mom helped me on my hands and knees and I vomited (pain 2/10). I believe my Percocet pill from 2 hours earlier was still floating around in my stomach because my puke was a beautiful shade of blue. At 11:45pm, mom helped me back into bed, but I couldn’t fall asleep until 12:20-ish.

DAY TWO (Fiber; took 2 Gas-X):

Incision pain 2 – 6/10 (10/10 when struggled to get out of bed)

Shoulder/CO2 Gas pain 3 – 10/10

Lower abdominal pain 2 – 9/10

Lower rib pain 1 – 4/10

Lower back 1 – 4/10

Lower ab pain near right hip 2 – 8/10

Pain while urinating 1 – 6/10

Woke up nearly every hour still…poor Jim and Mom. And needed help getting on and off the toilet.

Was still passing some clots throughout the day.

Nothing to eat except bone broth and crackers.

Memorable Moments:

At 1:20am, I woke back up stiff and needing to walk. Dragged my husband out of bed to help me get out of bed and proceeded to walk around the house for an hour. Jim went back to bed. And Mom was in and out of sleep as I cruised around the living room using the walker. When I went to go back to bed, the shoulder pain came back a 10/10. Mom and Jim had to help me (panicked) out of bed and I had to calm down before we tried to reposition and go back to sleep. At 2:40am, we did just that. I slept off and on until 7:15am.

At 3:55pm, my first FART!

At 4:37pm, I can lift my leg higher than the bah tub rim!! I couldn’t do that earlier!

DAY THREE (Purelax; took 1 Gas-X; 1 Naproxen Sodium):

Incision pain 2 – 3/10

Lower abdominal pain 3 – 9/10

Lower back 1 – 8/10

Pain while urinating 1/10

Pain while farting 1/10

Was able to sleep for a few hours in a row before waking up throughout the night.

Ate soup and crackers. Snacked on a pickle. Small bowl of ice cream (I mean…like 2 small spoonfuls)

No shoulder/gas pain today!

Memorable moments:

7:20am, my first poop!!!!!

8:50am, although I still need help getting on and off the toilet, I was able to (carefully) pull up my panties by myself today!

12:58pm, was able to get off of the toilet by myself! But I still needed help getting down onto it.

1:01pm…oh dear god…the Enema Story. TEAM POOP! Rosie and Erin helped me. And let’s just say by sheer force of necessity, I was able to get myself onto and off of the toilet by myself…Needed the enema due to severe and constant lower ab cramping and figured it was poop. Yep…there was LOTS of poop. Throughout the day, continued to get on and off the toilet by myself! PROGRESS!

4:50pm, was able to slowly and gently walk down the stairs to check the mail with Rosie and Erin! One step at a time.

DAY FOUR (Purelax; 1 Naproxen Sodium):

Incision pain 1 – 6/10

Lower abdominal pain 2 – 6/10

Lower ab pain near left hip 7 – 9/10

Pain while urinating 1 – 2/10

Pain while farting 3/10

Still needed help getting in and out of bed.

Ate soup with crackers. Snacked on cracker. Nachos for dinner!

Memorable Moments:

10:10am, got into the shower by myself!!! FREEDOM!

4:00pm, getting better with the steps outside! Still one at a time, though.

10:00pm, FINALLY laid down flat to sleep. YES!! No pain. Although I did get myself out of bed alone…don’t do that again. Not yet.

DAY FIVE (Purelax):

Incision pain 2 – 6/10

Lower abdominal pain 2 – 5/10

Lower ab pain near right hip 2/10

Ate tomato soup with crackers. Snacked on watermelon, blueberries, dolma, and pickle. Chicken balti pie for dinner.

Memorable moments:

12:55am, got up out of bed alone to go pee! Kind of waddle around like a turtle on its back, but it works.

10:10am, got dressed in REAL clothes! Skirt, tank top, and brushed my hair!

6:50pm, Jim and I went for a walk around our mobile home park for a few blocks. It was marvelous to get out of the house. Slow going. Didn’t get far.

8:50pm, pooped again! No enema needed! And no pain!

DAY SIX (Started my period! Fiber; 2 Ibuprofen):

Incision pain 2 – 3/10

Lower abdominal pain 2 – 7/10

Lower back pain 3 – 5/10

Ate miso broth. Snacked on watermelon, popcorn, apple with peanut butter, pickles, tortillas. Dinner was a pork and (very little) cheese. Yep, my appetite is BACK!

Memorable Moments:

5:26am, woke up thinking I peed the bed. Nope, just started my Ninja Period.

6:20am, BIG poop with no pain! Yep, I’m back, baby!

9:00pm, another short walk around the park with my husband.

DAY SEVEN (Fiber):

Incision pain 2 – 6/10

Lower abdominal pain 3 – 6/10

Lower ab pain near right hip 3 – 6/10

Pain while urinating 1/10

Pain while farting

Pain while pooping 5/10

Ate broth and soup. Snacked on popcorn. Dinner was fettuccine alfredo with shrimp.

Memorable moments:

I can bend over!!!

Lower left window band-aid came off! Steri-strips still in place. Looks good!

7:00pm, rode in car to go to dinner. Speed bumps and potholes hurt my lower stomach and incisions (4/10). Had to walk around the restaurant while waiting for dinner since sitting too long hurt.

DAY EIGHT (Fiber; 2 Ibuprofen): – it’s been one week since surgery!

Incision pain 2 – 8/10

Lower abdominal pain 2 – 7/10

Lower ab pain near right hip 5 – 7/10

Ate miso broth and leftover pasta. Snacked on popcorn, dried apricots, tortillas.

Memorable Moments:

6:50am, Baku walked on my stomach. Damn cat. All incision pain 7/10.

2:15pm, I can get in and out of bed easier by myself.

11:30pm, right incision pain was an 8 out of 10 and kept me awake until 1:00 a.m.

DAY NINE (Fiber; 2 Ibuprofen):

Incision pain 2 – 3/10

Lower ab pain near right hip 2 – 3/10

Pain under left rib 2/10

Ate soup & crackers, baked beans. Snacked on Hershey Kisses. Orange chicken for dinner.

Memorable Moments:

6:12pm, can still only sit upright for 10 minutes before incision pain is a 6 – 8 out of 10.

8:10pm, went for a 20 minute walk around the park with Jim. No pain!

DAY 10 (Fiber; 2 Ibuprofen):

Incision pain 2 – 7/10

Lower abdominal pain 1 – 4/10

Pain while urinating 1 – 2/10

Pain while farting 2/10

Pain while pooping 2/10

Ate scrambled eggs with cheese, soup, leftover orange chicken. Snacked on kettle corn.

Memorable Moments:

8:15am, Able to wash my calves for the first time in the shower! And I was able to blow-dry my hair! Lost left incision band-aid in the shower. Steri-strips are in place. And my belly is much less bloated!

9:00am, still can only sit upright for 10 minutes without pain.

7:00pm, walked around the grocery store for an hour with Jim. He did all the heavy lifting, but I’m exhausted.

DAY 11 (Fiber; 4 Ibuprofen):

Incision pain 2 – 6/10

Lower abdominal pain 2 – 6/10

Pain by right lower ab near hip 2 – 5/10

Pain while urinating 2/10

Pain while pooping 2/10

Ate eggs, corn beef hash, toast. Snacked on a plout and cherries. Snacked on kettle corn.

DAY 12:

Incision pain 2 – 6/10

Lower abdominal pain 2 – 5/10

Pain while urinating 8/10

Pain by right lower ab near hip 2/10

Ate rolled tacos.

Memorable moments:

Went thrift store shopping with Jim. Exhausted and napped for 2.5 hours afterward.

DAY 13 (2 Ibuprofen):

Lower abdominal pain 1 – 5/10

Pain by right lower ab near hip 5 – 9/10

Pain while pooping 1/10

Ate fried egg sandwich. Snacked on cherries, a pluot, watermelon, and cherry tomatoes. Dinner was cauliflower, beans, corn & cheese burrito with salsa.

Memorable Moments:

Spent 2.5 hours at the library. Too much sitting on hard chairs caused a lot of pain! And the Lyft ride was brutally bumpy.

DAY 14 (Fiber):

Incision pain 2/10

Pain by right lower ab near hip 1 – 3/10

Ate nachos (with very little cheese). Snacked on an apple with peanut butter. Dinner was yellow curry with chicken and rice, golden shrimp, and crab rangoons.

Memorable Moments:

Only woke up once during the night to go pee!

DAY 15:

Incision pain 2 – 7/10

Lower abdominal pain 3/10

Pain by right lower ab near hip 1 – 3/10

Lower back pain 1/10

Ate sushi.

DAY 16:

Incision pain 2/10

Pain by right lower ab near hip 1 – 3/10

Ate 2 eggs, french toast, and bacon. Lunch was a baked potato with sour cream and chives.

Memorable Moments:

Lost a few Steri-Strips today! Looks good.
Ran errands with brother in law: Trader Joe’s and Sprouts and Smart&Final. Minimal discomfort but exhausted. I didn’t do any heavy lifting.

Drank 3 glasses of pomegranate champagne. My first alcohol since 2 weeks before surgery!

Jim and I enjoyed a little bit of foreplay and “just the tip.” Didn’t penetrate too much and it was a lot of fun. No pain!!

DAY 17 (2 Ibuprofen):

Incision pain 1 – 4/10

Lower abdominal pain 3/10

Pain by right lower ab near hip 2 – 4/10

Pain while pooping 3/10

Lower back pain 1/10

Lower right rib pain 4/10

Ate leftover yellow curry. Snacked on a pluot. Dinner was a chicken breast sandwich.

Memorable Moments:

Vacuumed, did laundry, and changed the cat litter. It was exhausting, but I took it slow and easy and didn’t overdo anything. But…by looking at the cumulative pain scores above, I can tell I overdid it. Crap.

DAY 18 (2 Ibuprofen):

Incision pain 2/10

Lower abdominal pain 2/10

Ate two waffles with fake butter and real maple syrup.

Ate Indian food for dinner.

Memorable moments:

Enjoyed 3 glasses of white wine. And it looks like my body recovered well from yesterday’s chores.

DAY 19 (Took 2 Ibuprofen):

Incision pain 3/10

Lower abdominal pain 3 – 8/10

Pain by right lower ab near hip

Pain while pooping

Lower back pain 3/10

Ate 2 waffles, drank three glasses (small) sangria, 1 glass wine, lots of water. Bean guacamole chips, chicken sandwich, pickles, chocolate chip cookie, lentil salad.

Memorable Moments:

Today was our Endo Support Appreciation BBQ! It was WONDERFUL to see everyone, to meet their support, and enjoy their company. I’m tired, though!

Lost another Steri-Strip!

And on DAY 20: August 6, 2018, I returned to work. It was my first time driving since surgery. And it was tough. I also had my post-op appointment that day. Dr. Kurtulus removed all of my Steri-strips and everything continues to heal well.

Today is August 27, 2018, and it still hurts to sit at the computer for too long. I have to get up and stretch/walk several times during the work day.

My advice if you’ve got a surgery recovery to look forward to? Take one day at a time. ASK FOR HELP! And listen to your body.

Ways to Better Prepare for Anesthesia

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My mum recently asked me to look into ways we EndoWarriors may better prepare our bodies to accept, and recover, from anesthesia of our surgeries.

For my July surgery, I cut out alcohol the second I knew I had my confirmed surgery date and waited another two weeks before having my first sip.  So, I went a month without any booze.  Why?  Just because I thought it would be nice to pamper my liver in the hopes that my body would handle things a bit easier…or smoothly…or whatever.  But did I do any research? Nope.  So, now here comes the research.

Medications, Vitamins, Herbs, Recreational Drugs

This is VERY important so I will begin with this statement.  Some medications (including birth control), drugs, vitamins,  and supplements may interfere with the efficacy and processes of anesthesia.  Please be sure to give a thorough list to your doctor of everything you’re taking the moment you learn you have a surgery date.  Your physician may have you stop taking some of these immediately.  Others, you may be instructed to stop taking a few weeks, days, or hours before surgery.

One study stated that oral contraceptives should be discontinued six weeks before surgery due to an increased risk of deep vein thrombosis (blood clots).

However, if you are interested in a homeopathic route after surgery to strengthen your body there are many supplements that are touted to boost the liver’s abilities and flush kidneys, etc.  Do your research! And…talk to your doctor before starting any supplements.

Smoking

If you smoke, try to stop smoking as soon you hear you have a surgery date.  This could be a month or more in advance.  Too much?  Try to cut out smoking at least two weeks before surgery.  If you can’t cut it cold turkey that far in advance, try hard to at least abstain from smoking a few days before your surgery.  It will alleviate a greater potential for breathing problems or complications while under anesthesia.

Booze

Alcohol may also interfere with anesthesia as well as lead to excessive bleeding during surgery.  Health24 recommends cutting out all alcohol at least a week before surgery, longer if you’re a “heavy drinker.”  And you want to keep the liver functioning at full-capacity after surgery, so avoid alcohol a week or two later.

Food

Omitting meat and dairy products before and immediately after a surgery may help with your body’s recovery.  Certain foods can cause inflammation and discomfort.  And, according to some studies, people who did not consume dairy prior to colo-rectal surgeries had a faster recovery than those who did.  A healthy diet of fiber can keep the blood from clotting, which may minimize the risk of clots occurring after surgery.  A high-fiber diet will also keep your innards a well-lubed & poopin’ machine.

In 1993, mice were given a high-fat diet for three weeks before surgery, some mice were not, and other mice were switched from a high-fat diet to a low-fat diet.  Fatty-tissue chemicals change during surgery.  These same chemicals “talk” to organs inside our body.  During surgery, that fatty tissue…and those chemicals…are traumatized, just like any other flesh being cut into.  The study found that the mice who had the low-fat diet had fewer changes in their fatty-tissue-chemical-balance than the fatty-diet mice.  It suggests that a low-fat diet before surgery may aid in recovery because of the potential of minimalized trauma to that tissue.

And a study in 1998 found that potatoes (and fresh eggplant) may make it harder for the body to break down and eliminate any lingering effects of anesthesia.  Potatoes and fresh eggplant may contain a chemical called solonaceous glycoalkaloids (SGAs) – ever cut up a potato and found green inside? That’s evidence of SGAs.  SGAs are usually found in the stems, leaves, and sprouts, but may make their way into the edible part through damage or light exposure.  The broken down layman version of the article?  Even a tiny amount of SGAs in your system can cause a delay in the body’s ability to recover from anesthetic compounds.

Drink Your Water!

Staying hydrated, before (not the morning of, unfortunately) and after surgery is always a healthy decision.  But it will also help your body operate at optimal capacity.  So, drink up.  Keep those liver and kidneys happy and healthy!

*

So what did I learn today? Probably the same things you did.  And when I do have future surgeries, I’ll:

  • Immediately talk to my doctor about my medications, vitamins, supplements, etc. to see if I need to stop anything – and the timeline to do so;
  • Do the same thing I did with alcohol that I did this last surgery: cut it out a few weeks before and after;
  • Try to better follow my anti-inflammatory diet (NO CHEEEEEESE!) and steer clear of delicious potatoes a few weeks before surgery;
  • Continue to drink lots of water.  Seriously, it’s the only thing I drink these days, besides wine and beer (haha).

What about you?  Do you do something to prepare your body for surgery and recovery? Share below. I’d love to hear it.

Resources:

American Society of Anesthesiologists Preparing for Surgery Checklist

Australian Society of AnaesthetistsPreparing for Your Anaesthetic

BBC NewsGas, Injection or Potato?

California Society of AnesthesiologistsFive Tips to Help Your Patients Prepare for Anesthesia and Surgery

California Society of AnesthesiologistsTen Questions to Ask Before Anesthesiology

Health 24Diet Preparations Before Surgery

Health24Prepare Yourself Mentally and Physically Before Surgery

Hippokratia Quarterly Medical Journal – (Article; Jan. 2007) – Preoperative Evaluation and Preparation for Anesthesia and Surgery

Juicing for HealthAnesthesia Side Effects and How to Flush Out Toxins Post-Surgery

Mayo ClinicGeneral Anesthesia

Mind Body Green Health5 Ways to Bounce Back Quickly After Anesthesia

Science DailyWhat You Eat Before Surgery May Affect Your Recovery

University of Chicago MedicinePotatoes Prolong Anesthetic Reaction

~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa

 

Endometriosis Excision Surgery 3.0

Lisa Howard - Resilience
Dr. Mel Kurtulus and I before heading in. Photo courtesy of Brandy Sebastian; used with her permission https://www.brandysebastian.com/

On July 18, 2018, I underwent my third robotic-assisted laparoscopic excision of Endometriosis by Dr. Mel Kurtulus ( of San Diego Womens Health).  As always, I love to share my experiences with you – not only to create awareness of this illness, but in the hopes that the process of my surgery (and later recovery) may help you, or others.

Before I go on, I just want to take a moment to express my joy in the above-photograph.  I am a detached head, floating beneath a fluffy warm-air blanket in the pre-op area, enjoying a wonderful moment with an incredible surgeon and man.  Thank you, Brandy, for capturing this.  And thank you, Dr. Kurtulus, for being so marvelous!

Okay, on with the nitty-gritty!

My mom, husband, and I were awake at 6am and in the hospital by 8am to check-in.  If you’ve never been to the Scripps Hospital La Jolla, it’s glorious.  Every attention to detail and the efforts of the staff are meant to soothe and calm: beautiful artwork, a live piano player in the lobby, and compassionate staff.  It’s wonderful.  We were joined by a wonderful friend and fellow EndoSister, Brandy, to document the experience (these photographs will be shared at a later date…I’m so excited about what she is doing!)  I was rolled back for pre-op somewhere around 11:30 and wheeled back to the OR by noon.  My surgery took approximately four hours.  And here I was worried he wouldn’t find any Endometriosis…(I should know better…)  We arrived home around 7:00pm.  A very, very long day for my friends and loved ones.

procedures

The plan was to open me up and peek under the hood, so to speak.  If any Endometriosis was discovered, Dr. Kurtulus would excise it; any adhesions would be freed; the ovarian cysts that were seen in ultrasounds would be removed; my ureters would be examined and freed of any adhesions; he’d look inside my bladder for any Endo or evidence of Interstitial Cystitis; and he would (with my willing and educated permission) remove both of my Fallopian tubes.

What did he find?  Following is a page of my op report, in case you enjoy reading all of the medical terminology (like I do).  I’ll also further explain what I understand and share photographs below!

op page

In a nutshell?  I had:

  • I was laid on a table, strapped in, and tilted somewhat upside-down.  Then a tiny hole was punched in my belly, 3 liters of CO2 gas was pumped in and I was inflated, and the doc took a peek around.  Three additional ports were added (tiny incisions) so tools and the robotic arms (tiny!) could be inserted.  On with the discovery:
  • A cyst on my right ovary;
  • A cyst on my left ovary;
  • Endometriosis on my cul de sac, small intestine, near my sigmoid colon, and on my left ovary and fallopian tube;
  • My fallopian tubes were hideous, “angry”, inflamed, swollen;
  • Adhesions on/near my sigmoid colon, my bladder, my fallopian tubes;
  • My sigmoid colon was stuck to the left side of my pelvis;
  • My bladder was pinned to my uterus;
  • My left ureter was surgically detached to allow safe access to Endometriosis lesions on my left ovary, then reattached once all-clear;
  • And (hooray!!!) NO evidence of Endometriosis was found on my liver or diaphragm (discovered there in prior surgeries).

During my post-op meeting, Dr. Kurtulus let me know that this time my Endometriosis lesions were all either clear or red.  He said they were almost grape-like.  I’m so pleased that he is so skilled and thorough during these procedures!!  And grateful he knows what to look for!

Ready for photos of my insides?  I don’t know if you can click on the photos and make them full-size, so if you ARE curious about the full-sized (and zoomable) versions of these photos, you can view them here.

The Fallopian Tubes

My Mum told me that when Dr. Kurtulus showed she and my husband the photographs after the procedure, he said my fallopian tubes were “angry” and swollen.  That description will stick with her for quite a while, especially when she saw the photographs.  I am so glad we had already discussed removing my fallopian tubes before my procedure; as he likely would have removed them due to their massive state.

I had a 3cm cyst on my right ovary, which he removed while saving my ovary.  Also,  a cyst and Endometriosis lesions on my left ovary, which he excised (still saving my left ovary).

FT and ovaries copy
The yellow circles are showing Endometriosis on my fallopian tubes

My husband and I don’t want children at our age, but it doesn’t make the medical sterility any easier to bear.  I have grieved and mourned and cried and sobbed.  I am feeling much better now (although sometimes it still hits hard) after talking about it with friends and family and I wanted to share some incredible words from a few friends that they shared to comfort me:

“You may no longer have fallopian tubes, but you got one of the biggest pair of brass balls I’ve seen.” ~Barbara Carrera

“It’s a good thing to have the diseased bits out of the way.  And now you don’t have to worry about condoms.  And it’s fun to imagine your ovaries as crazy, free-floating googley-eyes!  They’ve been unleashed!!  Fly my pretties!  Fly!!”  ~Sarah Mew

Thank you, ladies.  I needed those laughs. ❤

The cul de sac (aka Pouch of Douglas)

This is my third surgery and during both of my prior surgeries, I had Endometriosis in my cul de sac.  To quote both of my first two op reports, my cul de sac was “obliterated.” What the heck is a cul de sac?  It’s the little empty space between the back of the uterus and the rectum.  It’s usually very common for Endometriosis patients to have lesions in this area.  This time, most of my Endo was on the left side, rather than everywhere in that little pouch.  And, Dr. Kurtulus excised all that he saw.

PofD Before and After

I’m flabbergasted at the difference!!! But, here are more photos of what my cul de sac looked like before I was all tidied up:

PofD Additional copy
Again, circles indicate Endometriosis lesions that I’m aware of

The Small Bowel

Two lesions were discovered on my bowel.  Dr. Kurtulus brought in a colo-rectal surgeon to look at the lesions to determine if they could be removed superficially or if something greater would be required.  The colo-rectal surgeon confirmed the spots looked like Endometriosis, but I would require a resection of that bit of small intestine.  It’s close to my appendix, on the right side.  So, it’s still in there, but I did already have a consult with that colo-rectal surgeon on August 8th.  My surgery date for the resection is pending and may take place by the end of this year!

Bowel Pics

The Bladder and Uterus

When I saw the photographs of my bladder being pinned to my uterus and held in place by a literal web of adhesions, I was amazed!  AMAZED!  I’d been having pain often when I peed and wonder if it was related to anything-Endo.  So Dr. Kurtulus freed my bladder (he’s my hero!).  He also looked extensively at the inside and outside of my bladder and found no evidence of Endometriosis or Interstitial Cystitis (aka IC).

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The Cost of it All!

As usual, I LOVE to share what this type of surgery costs.  And, to date, this was the most expensive for my insurance company!  I paid a $500 co-pay to the hospital and my insurance covered a whopping $121,669.50!  Holy moly!!!  I’m still waiting to see if the colo-rectal surgeon will submit a separate bill for his time, as it wasn’t itemized on my Estimate of Benefits form.  Other than that, there shouldn’t be any sneak attack bills…I hope.  If you’re curious what my first and second surgeries cost, check this out!

Future Plans

I had my post-op appointment with Dr. Kurtulus on August 6th.  He spent some time with me going through the details, labeling the photographs, and talking about our future plans.  Did we pick curtains or china patterns? No.  We covered prospective treatments!  I’ll see him again for an 8-week follow-up in mid-September.

He brought up birth control and remembered I don’t want to take it as I feel it truly makes me a different person.  Then he mentioned Lupron Depot and Orilissa, but acknowledged (before I could say anything), that he knew I didn’t want to take those.  So, he wonderfully respected my opinions and desires; didn’t push anything.  Didn’t make me feel like I was a “hostile patient” or making poor choices.  And he supports my desire to strive toward an anti-inflammatory diet, keep a positive attitude, and pursue the bowel resection surgery as soon as I am able.

The Recovery Process

I fully intend to fully blog about my 2-week recovery and share my notes soon.  But I wanted to also mention it briefly here.  It wasn’t easy at times, but mostly it wasn’t hard.

My pre-op Endometriosis pain is 99% gone!  Just a little bit of “ugh” near the lower-right edge of my abdomen…and I may either just be healing or it’s the last bit of Endo clinging to my bowel waving at me.  I was even on my period! And it was so pain-free that it was a Sneak Attack period and caught me by surprise (the poor bed sheets).

The first week was a whole lot of paying attention to my body, small little walks, a mostly-liquid diet, lots of lounging on the couch-bed and watching Netflix.  There was the expected post-op pain the first day, a vomit on Day One (whoever wants to do that so soon after abdominal surgery?), sleepless nights, and difficulties getting comfortable.  And those first few days of hardly any sleep wasn’t easy on my husband or mother, who had to help me get in and out of bed multiple times throughout the night.

The second week I felt far more capable, although I didn’t do much of anything other rest and be lazy.  And I returned to work on August 6th.

I had very little shoulder pain related to the CO2 gas and I blame that on my surgical team’s skill in deflating me as much as possible and getting out as much gas as they could!  For anyone who doesn’t know that absolute agony of post-laparoscopy gas pain, please, read this! I did have a few episodes of that pain, but nothing in comparison to my first surgery.

It took three days to poop.  The discomfort was so great that I opted for an enema.  That is a tale in and of itself; one you shall never read about!!

My body is still healing: sitting too long causes discomfort; stairs are from the Devil; and  I don’t allow myself to squeeze out a poo – if I have to do more than just a gentle push, it’s not time yet.  No straining.  No lifting.  No pushing. No pulling.  BUT I have been cleared to go swimming in a pool (no lakes or oceans)…and we can have sex! We were recently brave enough to give it a go and I’m happy to report there was no pain or discomfort!

The last of my steri-strips were removed at my August 6, 2018, post-op appointment and they’re healing well.

 

BEFORE I GO…

I want to thank Dr. Kurtulus and his staff for their excellent care, the incredible nurses and other surgical team members at Scripps Hospital La Jolla, Brandy for her amazing photographs and the project she is working on, my Mum for driving out (yet again) to be with me for surgery and during a hardest days of my recovery, my husband for all that he’s endured with me, Erin for taking care of me for a few days, Rosie for spending time with me during my recovery, Laura & Chris & Carrie for their wonderful company to celebrate my health, Zeiddy for constantly checking in on me, my employers and co-workers for the beautiful flowers, and all of my EndoSisters, friends, and family who also threw me well-wishes and love.

This has been an amazing experience.

Be well. All of you.

~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa

There was a cancellation!

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My August 15th surgery has just been bumped up to July 18th!!

My work is totally cool with the change.  HR even came in to offer some kind words followed by, “I’ve never been more excited for someone to get a surgery.”  He knows how much I’ve been hurting lately.

My Mum can still join us!

And I’m nervous and excited and scared and and and…the whole spectrum of emotions that bubble-up with a pending surgery.

Best news ever.

 

Four Years Ago Today…

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Sept. 2016

June 30, 2014: a day I went in to have a cyst removed from my ovary and instead awoke to a diagnosis of Endometriosis.  Answers.  Vindication.  My years of pain had a name.

So, I celebrate this day.

I am writing this on Friday, June 29th since I will be away from my computer on Saturday.  And today (Friday) I just scheduled my third excision surgery.  It will take place on August 15, 2018…almost two years since my last surgery.

June 30, 2014: D-Day (yep, Diagnosis Day); performed by Dr. Mel Kurtulus at the Scripps La Jolla Hospital.

September 21, 2016: Surgery No. 2; performed by Dr. Mel Kurtulus at the Scripps La Jolla Hospital.

August 15, 2018: Scheduled Surgery No. 3 (with the possibility of being sooner if there is an opening in the hospital’s schedule); to be performed by Dr. Mel Kurtulus at the Scripps La Jolla Hospital.

This blog wouldn’t exist without the events that took place on June 30, 2014.

I wouldn’t be seeking answers.  Wouldn’t be honoring my body.  Wouldn’t be connecting with others.

Our Bloomin’ Uterus support group wouldn’t exist.

There would be no annual walks or monthly get-togethers.

I would have no idea about the other women who suffer with me.

No camaraderie.

No support.

 I would still be alone, thinking my pain was normal and that I was weak.

And now I know that I am none of those things.

I am surrounded by Sisters and family.  Warriors!  Our pain is anything but normal.  And none of us are weak.

My life has been made better by being told I have a chronic, incurable illness.  And I have met some incredibly strong people because of it.  May we continue to hold each other high as we make this Journey together.  It’s not easy.  But we have each other.

So, celebrate today with me.

 

Tips for Surgery Day & Recovery

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Have an Endometriosis surgery scheduled?  Here’s a list of things a few of my EndoSisters and I recommend having handy!!  If you’d like to add something, please leave a comment below. 🙂

In Your Purse:

Chapstick

Lozenges (to soothe that post-surgery throat)

Snacks for afterward, especially if you have any food allergies or intolerances.

Have ready in the car for that drive home:

Blankets

Bottle of water

Chewing gum (it has helped some gals with nausea on the drive home)

Ice packs

Overnight bag with clothes, toiletries, etc (just in case you have to stay in the hospital overnight)

Pillows

Sleep Mask (one of those eye covers; you may get ill with all of the movement of passing cars and landscape)

Travel pillow (for stuffing between your stomach and your seatbelt!)

Vomit bag

For Home:

A friend or family member (seriously for like the first 3 days…don’t be alone. You don’t know what your body can and can’t do…and you should be resting)

Comfy clothes. Nothing that binds. Think giant t-shirt, moomoo, or even naked!

Fiber!! (oh man…you need to keep poopin’)

Footstool (to help get in and out of bed)

Gas-X (helps break up the surgery gas that’s floating around inside your body still)

Grabby-stick-thingy (you know, that old people use to get stuff off of the top shelf)

Heating Pad

Ice Packs

Pads (yep…you may be bleeding afterward

Pillow with armrests (keeps you propped up, while lounging, and keeps pressure off your abs.  What am I talking about?  Look here.)

Pre-made, easy meals (soups, crackers, etc.)

Prescriptions (painkillers AND anti-nausea medication)

Stool softener!!!!!

Squatty-Potty or something similar

Tape your cell phone charger to your headboard (you don’t want to bend down to get it!)

Walker (yeah, with tennis balls and everything – seriously helps you get around…not to mention sit/stand)

Questions for your Doc: Pre- and Post-Op

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Going in for a surgery for Endometriosis?  Not sure what to ask? Here’s a list of questions you may want to bring with you.

Some of these may seem like common sense…but it’s good to have them written down to ask. You may forget while overwhelmed or in a fog! Feel free to add to these!  Have any suggestions you’d like me to add? Drop me a comment below. 🙂

Pre-Op Appointment Questions:

What will you do if you open me up and see Endometriosis? (Ask this, because many women have their diagnostic surgery and NONE of the endo is removed – just a confirmed diagnosis and a referral to another doctor to deal with the Endo).

Do you plan to excise (cut out) the Endo or burn (ablation) them? (Excision is considered the best way to deal with it as ablation may not get all of the lesion. Some surgeons only burn away the lesion if it’s in a difficult location to cut. Some surgeons ONLY use ablation and do not cut away the lesions.)

Will you remove adhesions? (Adhesions are scar tissue, oftentimes spider-web like and can twist organs or weave them together).

What’s the worst case scenario?

Will you take photographs or video? If yes, may I have a copy? (if you get photographs, make sure they’re labeled so you know what you’re looking at)

If you find Endometriosis on other organs, such as my bowels, bladder, liver, ureter, diaphragm, etc., are will you be able to remove it? Or will you call in a specialist to assist with the surgery? Or will a second surgery need to be scheduled to handle it?

May I have any painkiller and/or anti-nausea medications filled prior to the surgery date?

Anything you can do to lessen the gas pain that occurs in my right shoulder? Tilt my head? Warm gas? Expel more gas before closing me up? What are the complications of any of these methods? (This may help with the shoulder pain many women complain about after a laparoscopy.)

How long do you expect the surgery to last? Any way someone can update my (person who is in the waiting room) as they wait in the lobby once surgery begins? (My first surgery they expected surgery to last 1.5 hours and it lasted 4; nobody updated them on status and it was stressful and worrisome for them.)

Any “best” position to sleep while recovering?

Anything I can do to make this surgery easier on you?

Before Discharged from Hospital Questions:

What did you find?

Is it normal for my incisions to bleed or ooze?

How long shall I keep on the bandage for the belly button?

How long shall I keep on the bandages for the small incisions?

What do I do if a stitch/staple/glue edge sticks out?

When can I shower?

When should I be worried if I don’t poop?  Three days? Less? More?

Make sure you understand the restrictions while healing. Every surgeon is different. You may not be able to lift something over a certain amount of weight for a few weeks, etc.

Make sure you get the telephone number for the Nurse or Doctor in case of emergencies. They generally have it written on a sheet of paper. Put that somewhere handy!

Post-Op Visit Questions:

May I have a copy of the photographs/video taken during surgery (yeah, I know we asked that in pre-op…but no harm at your post-op)

What Stage of Endometriosis do I have? (there are four stages…each stage depicts a level of infiltration, but not necessary dictates your levels of pain. You can have Stage I Endo with SO MUCH PAIN or Stage IV Endo with no pain whatsoever. It’s just something good to know.)

How long until we can have sex? Swim? Go to gym? Return to work?

Now what?

**Updated July 11, 2018**