I’ve decided to start publishing my pain journals; not only in the hopes of documenting my Endometriosis Journey, but possibly helping others with theirs. Let’s get intimately familiar with my habits, shall we? 🙂
I use Google Slides to track my food, drink, bowel movements, medication, sex, and pain levels. I also track the location of my pain. And I’ve found this method helps me stay more in touch with my body and it acts as a great aid for my doctor and surgeons. I can access Google Slides from my PC, my phone, and my tablet; so it’s never too far away. And if I’m too lazy to open the app, I just shoot myself an email with a timestamp and description of what’s going on (i.e, 2:45pm ate a bowl of vanilla ice cream). Then the next day (or whenever is convenient) I rebuild my Google Slides with that information.
There are several Smartphone Apps out there that act as diaries and symptom trackers, too, but I’m all paranoid about permissions and developer access. 😉 BUT…the most important thing: you do what’s best and easiest for you.
So, welcome to my world. I will likely retroactively post my prior pain journals just to have them all in one place and can compare!
I’m pleased to say that January was relatively uneventful! Surgery was a huge success and most of my pain has been discomfort from my incisions and staples, learning my new bowels (and what NOT to eat/drink), and very very mild period pain. I literally forgot I was on my cycle for 99.9% of my period!
You can feel free to scroll through the slides of every day in January:
I also wanted to start tracking my new bowel movements by type and pain levels. I’m a visual kind of person, so I like all the info in ONE place. And I simply cannot believe the difference since my surgery! To poo almost EVERY day multiple times a day and to have zero pain most of the time is incredible! AND to see the difference when I’ve eaten (or in this case…drunk) something that didn’t agree with me. January 25th and 26th were Life Lessons, that’s for sure. I’ll most definitely have to go back in time and rebuild my pre-surgery poop charts!
Blue is the number of poops in a day, the orange line shows if I had any diarrhea (and how many times in a day), and the red line shows pain levels during bowel movements:
I am so grateful for my Endometriosis surgeons: Dr. Mel Kurtulus (my gynecologist and excision surgeon) and Dr. Matthew Schultzel (my colo-rectal surgeon). You have given me my life back.
Before I get started, let me explain the image above. A talented artist by the name of Ivy Denton created it for me (they also created the EndoGuy and PoopChuteSnakie you’ll see below). They’re taking commissions if you’re interested in throwing ideas their way! “What is it,” you may be asking yourself. It’s a whimsical interpretation of my insides: a uterus with two cervix, no fallopian tubes (hence the band-aids and floating ovaries), and it’s accompanied by it’s new buddy: an intestine missing some pieces. I think it’s adorable! Thanks, Ivy!!
On with the good stuff! If you didn’t already know, back in July 2018 during an excision surgery Dr. Kurtulus discovered a pair of Endo lesions on my small intestine . He brought in a colo-rectal surgeon, Dr. Schultzel, to look at it and decide if we could remove it then. Unfortunately, it was deemed too deep and risky without a proper bowel prep and a future resection would take place.
On November 26, 2018, I had a tag-team surgery for my Endometriosis. Dr. Mel Kurtulus once again performed my excision surgery and Dr. Matthew Schultzel performed my bowel resection. This took place just four months after my last excision surgery. The procedure lasted about four hours and went without a hitch. I remained in the luxury resort…I mean the Prebys Cardiovascular Institute at Scripps Memorial Hospital for three nights/four days while I recovered.
The Bowel Prep
This was my very first bowel prep. Ever. And I was terrified of so many things. I’d heard horror stories about the taste of the prep, and equally horrifying tales of the aftermath.
I was prescribed Suprep, which of course my insurance refused to cover. If that ever happens to you, get a manufacturer’s coupon off of their website and bring it to your pharmacist. It certainly knocked a bit off the price for me!
Honestly, it didn’t taste that awful…kind of like a salty grape-flavored 7-up. But ugh it was still rough to get down.
35 minutes after I downed my first big dose of Suprep…and the torrential downpour had begun. Over the next 2 hours, I pooped a total of 19 times (I’m sparing you the details, but kept a detailed log; no pun intended). Most of it was liquid and sometimes I couldn’t even leave the toilet in between craziness.
My colo-rectal surgeon also had me on a regimen of ClearFast, to help not only keep me hydrated during the process but to make for a faster/easier recovery after surgery.
Then at 10pm, I took my 2nd dose of Suprep. It took about 30 minutes to take effect and over the next hour I poo’d liquid 13 times. At 11:30, I dragged myself to bed. At 4:00am, I woke up to take my prescribed ClearFast and learned that Suprep was still in command. I pooped again 5 times over the next hour. And when we got to the hospital, I poo’d liquid again twice before surgery (once in my surgery cap ‘n gown)! I was scared that the clear liquid-pooing would keep them from performing my surgery since I was obviously still voiding. Nope! The show must go on!
The Bowel Resection
After a few months of working with my insurance and getting Dr. Schultzel specially-approved for my surgery (even before he was in my insurance network), the day was here! I endured the prep and I was ready!
My Mum came with me to the hospital and my husband had to work, we met the smiling faces of hospital staff who have remembered us from previous surgeries, AND I had my favorite nurse help me during pre-op setup. Fist bumps, hugs, and cheek-kisses were exchanged all around the pre-op area as they wheeled me out of the room. Have I mentioned how much I love this hospital? They’re like family!
I digress: back to the surgery!
Previously, the endo was spotted on my terminal ileum, which is the area where the small intestine meets your large intestine ( X marks the spot on the picture below). At my request, my colo-rectal surgeon was also going to remove my appendix due to the close-proximity of Endo and the chance that it, too, may be affected. He was also going to inspect and possibly remove any portion of my large intestine that may also be Endo-laden (see the red square below). He ended up doing JUST that.
There were a total of five incisions (1 on my right side, 3 on the left, and a larger one at my bellybutton). I was given a TAP block injection while I was under anesthesia to help with my post-op pain. And in went the camera…
Dr. Schultzel spotted the Endo lesion on my terminal ileum right away, then saw more lesions on my cecum (kind of the bottom right portion of the large intestine) and near my appendix. He also saw a lot of pelvic Endometriosis, but knew Dr. Kurtulus would be handling those nasty buggers.
This is where things get exciting! When I learned I’d have my guts stapled together, I envisioned a big ol’ heavy-duty office stapler. BUT a surgical stapler, especially a robotic stapler, is waaaay cooler! It sort of cuts and seals at the same time with a row of tiny little staples. If you’re familiar with sewing, imagine a serger machine. Zip & slice! One neat little package. I have no way of knowing how many staples still reside in my guts, but I imagine a lot of little teeny ones!
If you don’t want to imagine, you don’t have to: here’s a Youtube video (not mine) of another surgeon using a robotic stapler during a surgery (fast forward to the 0:44-second mark) https://www.youtube.com/watch?v=wSxiTZwdUFA
So, Dr. Schultzel removed my appendix, my cecum, a portion of my large intestine, my terminal ileum, and small intestine. All in all, it was a little over 7 inches (18 cm) of my guts. The stapler system was used in all areas where my guts were removed.
My small intestine was reconnected to my newly-constructed large intestine and that connection now lives over my liver, near the right of my bellybutton. Then he wrapped that little newly-formed gut-intersection in a flap of my omentum (a fancy term for a fatty, fleshy organ that sits near the stomach and is kind of like a draped apron) – imagine a little poopchute burrito or taco near my bellybutton. 🙂
Dr. Shultzel then passed the controls of the Da Vinci over to Dr. Kurtulus (see The Endo Excision below). Once Dr. K finished removing any Endo and adhesions, Dr. Schultzel continued to work his magic. He pulled out all of the cut-out bits through a hollow tube placed in my bellybutton incision (called an Alexis wound retractor), stitched, and glued me up.
My incisions are definitely larger than surgeries-past, but so much more was done. After reading about the Alexis Wound Retractor, now I understand why my bellybutton incision is roughly 2 inches long!
The Endo Excision
Awww, Endometriosis. It loves me so much it keeps coming back to visit. With it being just four months since my July wide-margin excision surgery, we weren’t expecting to find much, if any. Dr. Kurtulus was there to inspect under the hood just to be safe while I was already under the knife for my bowel resection. A wonderfully, perfect coordinated effort. Boy, were we in for a surprise.
He found newly-formed adhesions on my left side, which involved my left ovary and abdominal wall, more along my peritoneum lining, as well as new adhesions that had begun to smash my bladder back down. He also found Endometriosis lesions “all throughout the pelvis.” They had grown back on my right ovary, my right ovarian fossa (where the ovary hangs out), my Pouch of Douglas, the uterosacral ligaments, near my bladder, my left ovary, and the left adnexa. And, as is customary, an Endometrioma (the chocolate cyst) had formed again on my left ovary. Always my left ovary!!! Even after just four months…*sigh* But…”the rest of the pelvis and abdomen looked clear of endometriosis lesions.” Yay!
He removed all of my Endometriosis lesions with wide-margin excision. He also removed the Endometrioma (he saved my left ovary) and he cut away all of the adhesions that had formed. He also, as is our custom, performed a cystoscopy to look inside my bladder for any Endo or abnormalities: pink, healthy, and all normal! And for the first time in a few surgeries: no Endo on or around my ureters!
Everything that was removed: the gut-bits, the Endo lesions, the adhesions, and Endometrioma were all sent off to pathology. This was the longest pathology report I’ve ever received: a total of seven pages! And it confirmed the presence of microscopic Endometriosis on my appendix. I’m SO grateful the surgeons and insurance all agreed to preventatively remove it.
My Mum, husband, and friends who saw me after surgery said it appeared to be my easiest one yet, in terms of how I felt during recovery. I, on the other hand, felt it was my hardest.
Four days in the hospital: my Mum stayed with me every day while I was there (I love you, Mum!!), my husband would visit after work, both of my surgeons visited as often as the could, and the nursing staff were freakin’ amazing!
During my stay, I was given a cocktail of Tylenol, Gadapentin, and Celebrex to manage my pain. I was offered Tramadol (100mg), but didn’t want it since I already don’t like taking my 50mg Trammy at home. But the cocktail did well and pain was minimal. If memory serves me correctly, I threw up a few times the evening of my surgery (likely related to anesthesia) and became intimately familiar with the hospital-issued throw-up bags.
My surgeon and hospital staff encouraged me to get up and walk the halls as often as I could muster. Not only would this help keep me limber and young (Ha!), but it would help get my bowels workin’ and tootin’. Those long walks around the 5th Floor wing were fun: I stumbled across my surgeon on one of those walks, as well as my best friend, Rosie, and my husband escorted me down the halls a time or two!
I remained on a liquid diet until I farted…late the evening on my third day. Very long days of nothing but soup and jello. But that fart? Which was AWESOME because not only was my Mum’s face epic and unforgettable when I tooted, but all of the nurses were just as excited as we were, AND I was served a small meal of soft foods (diced chicken breast never tasted SO good!). Mum and I even had a laugh keepin’ track.
The next late-morning, I was able to poop (if you can call it that…I’ll spare you the details, but I hope my Mum is laughing when she reads this) and Iwas merrily discharged on Thursday, November 29, 2018.
There were bouts of the dreaded shoulder-gas pain, both at the hospital and at home. A few of them were scream-inducing memorable. And those are the worst moments I remember. Sneezes, coughs, and vomiting were equally unpleasant. As well as trying to get, and remain, comfortable for sleeping. When I got home, I mostly remained on my Tylenol pain management, with the exception of 1 Naproxen Sodium and Two Tramadol through the duration of 2018.
I was off of work for six weeks. And got a little better every day. I kept a running tally of milestones:
11/28/18: Released from hospital and finally at home
12/4/18: I can raise my arms above my head without feeling like I”m pulling my guts out of my incisions
12/8/18: First sneeze since surgery: one sneeze, two sneezes, three sneezes!! SOOO PAINFUL!
12/14/18: I can blow my nose without my guts hurting!
12/17/18: I still can’t bend down and wash my feet, and it’s been 3 weeks since surgery…so I got a pedicure at a local salon. There was some disgusting dead skin!
12/19/18: If I use the handrails, I can walk up the stairs like a normal! Slowly, but normal!
12/20/18: I walked the entire mobile home park! It took over half an hour, but I did it!
12/27/18: I drove!!!
12/29/18: I lasted 10 days without needing to take a pain pill!
1/3/19: I laid down on my side for just a few minutes! Soon: no more back-sleeping!
1/7/19: I’m back to work!!!
1/9/19: I can lay down on my stomach! Albeit for just a few minutes. But still!!
1/17/19: as a fun note: bending or squatting or sitting for long periods still becomes very uncomfortable. So…I haven’t shaved my legs since before 11/26! Bwuahaha.
I cannot tell you how much better I feel since before my surgery. I haven’t had any of my pre-surgery pain. Not one! My bowel movements are (99.9% of the time) pain-free. The constant pain on the right and left sides of my lower abdomen are GONE. My December period was light and cramp-controlled with Ibuprofen. My back pain is gone. And I poop ALL the time.
And…I’m a pooping machine! I compared the first week of November poops to my January poops, both the frequency and the pain levels. My jaw hit the floor:
I now eat six small meals a day, instead of three large ones, to accommodate my new bowels. I also have severely restricted my alcohol intake. Where before I could enjoy 2 or 3 beers in a sitting, I can now only have one. Same goes for wine or cocktails. More than that and I’ve noticed I’m severely dehydrated and my gut’s not happy for days. So, I’ve become the ultimate cheap date: appetizer menu and one drink. And it’s been a marvelous trade-off.
I’m super grateful to my Mum for being with me for a week while I recovered. There’s just something so special about the healing energy of a Mum. And to my friends who came to take care of me after Mum left: thank you. ❤
Nobody’s favorite part…the money!! This has been my most costly surgery to date; not only because of the two surgeons involved, but the hospital stay after surgery! And my bills are still rolling in:
Hospital Facility Bill
Insurance paid per contract
Endo Excision Surgeon Bill
Insurance paid per contract
Insurance paid per contract
Colo-rectal Surgeon Bill
Insurance paid per contract
Insurance paid per contract
Asst Surgeon: Excision Bill
Insurance paid per contract
Asst Surgeon: Colo-rectal Bill
Insurance paid per contract
I paid in full
Before I share all of the surgery and recovery photos, I wanted to share the photo I found the most amazing.
Back in July, Dr. K took a photo of my bowel with the 2 pink & red Endo lesions. In November, those same splotches had turned BLACK. In a matter of four months, the disease altered that much. I know that lesions come in a broad range of colors…but I didn’t realize they changed color or shape once they were formed! Nor so quickly! So, we’ll start with that! Be flabbergasted with me 🙂
But here are the rest of my surgery photos I received at my post-op appointments (click on them to enlarge):
Mum took a lot of photos while we were in the hospital (but funnily enough…none of her!). Here’s the Hospital Shenanigans:
And here’s a slideshow of my incisions from Day One to Week Seven!
If you’ve made it ALL the way to the end of today’s blog entry, you have my applause!
I’m eternally grateful to both my skilled surgeons and their staff; the insurance crew who expedited the approvals through the system; my Mum, my husband, my Seester, and my friends for not only helping me, but putting up with my grumpy-recovery BS; as well as my employers and my co-workers for allowing me to do this second surgery this year. 2018 was one hell of a ride. And this surgery could not have gone any better without each of you.
Well, here we are in 2019 and I’m starting my blog off talking about poop…Why? Because I’m SUPER excited to share with you how different my bowels (and pain levels) have been since my recent bowel resection and Endometriosis excision surgery.
If you weren’t aware, I underwent a bowel resection to remove deep-infiltrating Endometriosis from my small intestine.
Embrace this discovery with me! Here’s my pain journal summary for November of 2018:
And here’s my pain journal summary for January of 2019:
I went one step further and compared my bowel movements and their pain levels for the first eight days of November and of January! The difference is…staggering!
Look how numbers have completely shifted!!! I was flabbergasted when I did the comparison! I mean, I’ve obviously noticed a huge difference in my quality-of-bathroom-life, but wasn’t expecting THIS! And if you’d like more up-to-date info on my bowel movements and pain symptoms, I’ve started blogging about them on the first of every month.
If I ever needed any sort of reassurance that my bowel resection and Endometriosis excision surgeries were the right call, this is it. Not that I needed that validation. And am so grateful to Dr. Mel Kurtulus and Dr. Matthew Schultzel for their expertise, compassion, and friendship.
But I was SO excited about the difference that I wanted to share it with you…And bring in the New Year with…poop-talk.
Stay tuned. I’ll be blogging full-force once again now that I can sit at a computer for longer periods of time. And I cannot wait to share with you the details of my last surgery and the findings.
Be well. I’ve missed you Readers. And I’m so pleased to be back in the saddle, so to speak.