A beautiful breakdown of treatment options for Endometriosis

A pile of open books
Photo by Amanda George from Pexels

A new study about Endometriosis is out regarding the modern treatment of the disease.  This includes birth control, progestins/anti-progestins, GnRH agonists, aromatase inhibitors, danazol, NSAIDs, surgery, and alternative treatments. It identifies the pros and cons of each.

The study closes with this beautiful phrase:

“The pharmaceutical or surgical treatment require an individual approach and deliberated informed consent of the patient. Pharmacological treatment is only symptomatic, not cytoreductive, therefore, to remove endometriosis lesions, surgery should be performed.”

It’s uplifting to see a study bluntly state that medications only treat the symptoms, NOT the disease itself, and the Endo lesions need to be removed.  AND that each case of Endometriosis must be reviewed on an individual level.

Deliberated informed consent of the patient” means (to me) as having a fully-informed patient who is made well-aware of the pros and cons of each choice, the side effects, risks, and potential outcomes; as well as having performed their own research before agreeing to the treatment.

Even with excision, though, there’s always a possibly of recurrence or new growths. And not all physicians are skilled enough to recognize each lesion. Not to mention many surgeons still practice ablation (the burning away of the lesion, leaving rooted tissue to regrow).

Welcome to an EndoWarrior’s very frustrating pursuit for competent medical care.

I encourage you to read the study for yourself and share it.

Resources:

Journal of Education, Health, and Sport (Article, 2019) – Available Treatment Methods for Endometriosis

Share Your Story: Zoe

Zoe, a brave EndoWarrior, shares her journey with us today…even while she has another surgery pending. We wish you all of the best of luck, Zoe!!!

**

I started my period by having waterfalls for periods with no regularity from age 13 but was put on the pill to manage that at age 15 and that worked. I from my teen years thankfully had no interest in having children. I am not a career woman either, I just don’t get the clucky feeling other women get when they see kids – I get that feeling when I see animals instead so I have fur babies.

The symptoms that brought me to the surgery table in April 2016 (age 33) were intense cramping, sweating and then diarrhea after sex (sexy I know!) I also had very rare cases of period pain that felt like a longer lasting version of the pain I got after sex, other than that my period pain was usually manageable. I did find relief from the symptoms after the recovery of my first surgery.

It took me a very long time to get taken seriously by doctors about my symptoms and what were causing them. I saw a gastroenterologist (it must be your ulcerative colitis), a rheumatologist (maybe it’s something to do with the lupus) and then finally a gynaecologist about it. I was given an ultrasound at a regular ultrasound place and this was my first time having the probe go you know where! The ultrasound showed nothing, which I know now is pretty common as ultrasound technicians need to be specially trained here to look for endo and even if they are trained they can see only the deep infiltrating endometriosis (DIE) and adhesions.

I was put on a public waiting list to see a gynae about my symptoms and they advised me of the laparoscopic diagnosis and removal process, I said I wanted the surgery. They saw me again in another 3 months just to be sure I still wanted the surgery and then I was put on a wait list for the actual surgery. So all in all, first enquiry through to surgery it took 15 months for me to be on the operating table!

The surgery found that I had stage 3 endometriosis and all lesions were removed, I was also found to interstitial cystitis in my bladder (they also sent a probe into my bladder). They put a mirena in to control the return of the endo hormonally and I was on my way – albeit in a lot of pain that day; from being on the operating table with a breathing tube for 3 hours – I had no idea how raw my throat would be and how much it would hurt! having only had short surgeries in the past.

As I mentioned I got relief from these symptoms, I also eventually had no period because of the mirena (OMG best thing ever!)

From mid-2017 I started to get decent period cramps however for a couple of days every few months then it became monthly then fortnightly, then weekly then half the week until by August 2018 it was almost every day and then it WAS everyday. At the end of 2017, I asked my GP to refer me to a gynaecologist, my GP referred me to the gynaecologists at the local hospital (I had moved to rural Australia by then).

The gynaecologist looked at my history and saw that I had stage 3 endometriosis in the past but still did the usual “are you sure it’s not your ulcerative colitis?” so off I went to my gastroenterologist and described my symptoms, he confirmed that my ulcerative colitis would not cause new symptoms like this and my very recent colonoscopy showed the ulcerative colitis was very mild at the moment with the medication that I am on for it keeping it under control. So back to the gynae I went, the gynae agreed that it might be time for some more endo excision surgery but first he wanted me to see one of those ultrasound technicians that are trained to see endo. I asked why and the gynae said because he does not have the skills to excise stage 3 or stage 4 endo so he would need to send me to the city hospital if there is deep infiltrating endometriosis (DIE). This meant that I could not be placed on any surgery waiting lists until the scan results were in GRRRR. So off I went on an hours drive a couple of weeks later when I could get the appointment with this ultrasound place and I do recall that he (the Dr doing the ultrasound) noticed something on my bowel but he said to me that he was unsure whether it was endometriosis or scar tissue from my previous surgery. Either way the results of the ultrasound were nothing related to deep infiltrating endometriosis (DIE), the only finding listed was that my left ovary had limited mobility.

I had pain everyday by this point and whereas the period pain was mostly in my legs to begin with, now it was mostly in my lower back and felt like period cramps only all the time! The cramps got worse when I needed to poop too! And after I pooped the extra pain hung around. I took more than the recommended dose of paracetamol aka Tylenol because the maximum dose didn’t cover me for 24 hours and due to my ulcerative colitis I am not allowed to tale NSAIDS which is what most people use for period pain.

So I waited 4 months on the waiting list to get my surgery at the local hospital and a replacement Mirena iUD and when I woke up I swear that I had some kind of convulsion and then when I (still groggy) spoke to my gynae he said that he had found that my right ovary was stuck to my uterus which he had freed up and also (I thought he said) he removed a cyst on my ovary. He had also found that my uterus and bowel were stuck together and that I’d need a colorectal surgeon (in the big-city hospital) to separate them. 

I went into the recovery area of the day surgery unit and asked them if I had some kind of convulsion when waking up, they said that I didn’t and then they said I could leave. I had no information on my surgery other than some generic pamphlets on the type of surgery I had; so I asked the nurse to give me an operation report and she checked and came back to me saying that the gynae has already spoken to me and told me what happened so I didn’t need anything other than the pamphlets to go home with. I argued that I was still doped up when the Dr spoke to me and then I asked if they were  going to send me home with pain meds and the nurse said that they don’t usually but that she would check. When she came back, she had a prescription for pain meds and said that she will request a wheelchair and someone to push to get me to a car (which my partner was driving). It took about 15 minutes for a wheelchair to arrive and in the meantime I was approached by one of the doctors who attended my surgery and I asked her and received an operation report.

Once home, I decided to indulge by taking the maximum dosage of my codeine paracetamol pain killers, I had my partner caring for me and then my auntie so I had not a care in the world! I also took degas and made sure I had lots of cushions on the bed to lift me up as well as maternity undies so they were nice and loose on my wounds. I was still hunched over from the pain when I walked but I felt pretty floaty and a-OK. I didn’t poop or feel like I needed to poop for 7 days or so and then suddenly, I needed to poop but it wouldn’t come out! It was sticking out of me and I could see that my whole genital area was stretched by it but the poop appeared huge and was stuck. I spent 3 hours on the toilet – afraid to push hard for my stitches and internal surgery wounds. I called nurse on call who said to wait it out (IT HAD ALREADY BEEN 3 EXCRUCIATING HOURS) then I called the ambulance and they wanted me to speak to a Dr about whether I required an ambulance or not. While I waited for a call from their Dr I felt a huge wash of nausea and needing to poop so I sat  on the toilet with a bucket in case I puked and my body did an automatic huge push and pushed out the obstruction in my bowel. It was a couple of minutes later that the ambulance Dr answered the line and I let them know that it had sorted itself out. This is a warning about opiates – take stool softeners with them!!!

The period pains hadn’t diminished and I had to wait 2 months to see the gynae again so I put into motion the referral process to a big-city gynae through my GP. Initially I was referred to the closest big-city hospital but I never heard back from them even though when I called them they told me that they had received my referral. My doctor later suggested that she refer me to a private gynaecologist that I would need to pay for but the surgery itself would be via the public system (=free) so I agreed and my GP got her personal mobile phone out and started calling people that she knew in the medical industry to find a gynae that could do my surgery at a public hospital. My GP eventually found the gynae who is going to do my next surgery ( I think that she was sick of seeing me every week for tramadol prescriptions!)

I saw the gynae that did my surgery in 2018 for a follow up in late January 2019 and let him know who I had been referred to and requested a support letter for me having a hysterectomy on the next surgery which he gave me as he believed it would help my symptoms as well as knowing that I did not want kids. He also wanted to check my Mirena to make sure that it was in place properly and alas he could not find the strings! I then had to do a pregnancy test (negative thankfully) and another ultrasound. This ultrasound found my Mirena where it should be but somehow the strings had gone AWOL and it also found that my left ovaries were immobile (again as with the last ultrasound). I had a follow up with the gynae and asked him about why he found disease in my right ovaries yet the ultrasounds said that it was always on the left. My gynae said that ultrasounds are not as accurate as surgical diagnosis.

In between these appointments my GP moved from the rural doctors surgery so I had another GP and this GP specialised in womens health (woohoo!) This GP suggested that I go off the tramadol and onto Lyrica instead and I have been on this ever since (along with the max dose of paracetamol/Tylenol).

I saw the gynae that I was referred to on the 27th of February and it turns out that he was the very gynae that did my first surgery in 2016! We together agreed that the best approach for me seeing as I am now 35 years old and still do not want kids is to have a hysterectomy during the surgery. The gynae offered to give me drugs to shut down my ovaries until surgery (which should stop my daily pain) but I declined because I did not want the menopausal symptoms. The gynae asked that I get another ultrasound at a clinic in the city to check how deep the endo is into my bowel which would therefore determine whether he needed a colorectal surgeon at the surgery or not (depending how deep it is). He also informed me that if they do any kind of bowel resection, I will need a stoma (colostomy bag) – which I was really dumbfounded about until he explained that it was due to all the immunosuppressing drugs that I take for ulcerative colitis and lupus. The gynae also let me know that he believes all the Autoimmune disorders I have (lupus and ulcerative colitis) are related to the endo and interstitial cystitis (which I am still not sure what that is other than perhaps endo of the bladder?) The gynae agreed that Lyrica was a good choice for my pain and told me that even after the surgery I may need to take it and to see a pain clinic. He said it was because I had been in constant pain for so long, my nerves are hypersensitive and probably won’t realise that the pain is gone.

On the 21st of March I had my ultrasound booked in at 12pm with the only technician that my gynae trusted the word of. I would also have to do my first bowel prep before the ultrasound. Well, not my first bowel prep (I have ulcerative colitis so need to do regular colonoscopies) but my first one for before an ultrasound anyway! The bowel prep involved a laxative pill the night before and then a “fleet enema” an hour before the ultrasound. This was so they could clearly see my bowel wall and how deep the endo was in in without having poop and toots in the way! The pill was easy, no special diet on the day before or anything. The fleet enema was going to be a problem though because I live 2 hours drive from the city where this ultrasound tech is, so they said I can use a room when I get there and do the enema in there. My partner and I arrived an hour early (for the enema) and struggled to find a park, ended up finding 2 hour parking a couple of blocks away which should be enough but it wasn’t because the ultrasound was late doh! But anyway back to the enema… the enema felt awful! It felt OK at first and then I felt this really hot liquid churning around my belly and then the need to go to the toilet immediately or its gonna come out anyway. I kept going back to the toilet every 10 mins after that as well with just a little brown liquid needing to come out. Not my favourite bowel prep but at least it was fast I guess! We waited and waited and I went back and forth to the toilet until my partner had to make the trek out to put more money in the parking meter and that was when I got called in for the ultrasound. The ultrasound was done with the usual “magic wand” (as I like to call it) up the vagina and they pressed it uncomfortably against my bowel to see what they needed to see. Thank fully what they saw was that the penetration into my bowel wall did not appear to be deep and that it was my ligament stuck to the bowel not my uterus itself! I also had 2 very mobile ovaries so perhaps in the other scans, my bowel was pressed against them stopping them moving?

The good news from these results is that a colorectal surgeon is not needed for my surgery so no stoma / colostomy bag! Hooray! I also wholeheartedly believe that the reason that my endo hasn’t progressed much since the first surgery is because the Mirena has been controlling it hormonally. Sure I have pain and my ovary was stuck to my uterus as well as my ligament stuck to my bowel but that is nothing compared to my 2016 surgery. I feel that my adhesions in the last surgery and currently could have even been from the scar tissue where endo was removed in my 2016 surgery but I am no surgeon and I will haveto see what my gynae thinks of that theory after my next surgery.

😊

At this stage my pain is well managed (for the most part) with Lyrica 75mg at night and Paracetamol / Tylenol slow release during the day. I sleep the night with zopiclone sleeping pill and sometimes am kept awake by mild pain if I don’t take my sleeping pill. My surgery should be in July and I’ll be sure to keep you posted 

**

Zoe allowed me to see her previous surgery reports, scans, and prep docs to share them with you today:

On April 26, 2016, Zoe had an outpatient laparoscopy because of complaints of pelvic pain after sex (which sometimes included sweating and diarrhea), as well as menstrual cramps that mimicked her post-intercourse pain. She had a D&C (dilation & curretage done) to clean out some uterine lining, a cystoscopy to check out the inside of her bladder, excision of endometriosis, and a Mirena IUD placed. Care to see her surgery photos?

The findings of her surgery? Evidence of interstitial cystitis, deep infiltrating endometriosis, a large nodule on her left uterosacral ligament, a large right pararectal nodule, and superficial endo around her right broad ligament region. Her tubes and ovaries were normal, and they confirmed the fact that she has a retroverted uterus. The nodules and endo lesions were excised and sent off to pathology. The biopsy confirmed endometriosis found on her right broad ligament, the left side of her Pouch of Douglas, the right side of her pelvic wall, and both nodules were endo. The lining removed from her uterus came back as as “no evidence of endometritis, hyperplasia, or malignancy,” but no mention of adenomyosis, since that is often located deep within the uterine wall.

In 2018, Zoe had transabdominal and transvaginal ultrasounds due to pain. It showed that she has a retroverted uterus, with evidence of a 1cm fibroid within her uterine wall. Her Mirena was shown to be correctly positioned. Both a retroverted uterus and fibroids have been known to cause pelvic pain. The ultrasounds also showed that Zoe’s left ovary was slightly stuck to the middle of her uterus. During the examination, her left uterosacral ligament was tender. There was no evidence of deep infiltrating endometriosis.

In November of 2018, she had her surgery. Endometriosis was excised (cut out) and ablated (burnt off), adhesions were removed, a D&C was performed (to remove excess uterine lining), and the Mirena IUD was inserted. Her right fallopian tube and ligament were stuck to her pelvic wall; right ovary was stuck in the cubby of the ovarian fossa; a nodule on her right uterosacral ligament which may be deep infiltrating endometrisiosis was discovered; and her rectum and sigmoid colon were stuck to a uterosacral nodule, too. The op report states, “left tube and ovary normal;” no mention of it’s immobile nature found in the ultrasound. The noted stuck bits were freed and a biopsy of the uterosacral ligaments and nodules were performed. She’s provided her 2018 surgery photos for your viewing pleasure, should you so desire.

In late January of 2019, Zoe underwent another pelvic ultrasound due to her worsening symptoms and the missing IUD strings. The ultrasound confirmed the retroverted uterus, as well as the Mirena being perfectly placed within the uterus. It also found that the left ovary was “poorly mobile.” I don’t recall reading anything in her November op report about freeing the left ovary from it’s sticky place.

On March 21, 2019, another ultrasound was performed. A bowel prep was advised so they could have a clear image of her pelvic region. The radiologist reported that a Mirena IUD may make diagnosing adenomyosis by ultrasound difficult, but it didn’t appear that there was any adenomyosis. Both ovaries appeared mobile and were not tender. A nodule was present on Zoe’s right uterosacral ligament and the bowel seemed stuck to the nodule, although the nodule did not appear to infiltrate the bowel wall. The nodule may simply be scarring from previous surgeries or it may be recurrent endometriosis. Unfortunately, one cannot tell from imaging studies.

My 4th Endo Excision Surgery

"Uterus & Guts," created by Ivy Denton
@deathwindchimes 

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.


Toilet with toilet paper

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.

Lisa Howard making a face at the first sip of SuPrep

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!

Doodle of bowels

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.

Diagram showing the portion of bowels removed during surgery

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.

Alexis Wound Retractor
Alexis Wound Retractor; photo courtesy of Applied Medical

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!


Doodle of Endo

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.


Photo of Lisa Howard recovering in hospital

The Recovery

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.

Hospital chart showing I farted 3 times since 11/28/18

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:

Chart comparing bowel movements and pain between November and January

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. ❤


Dollar signs

The Bills!

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:

$224,476.41Hospital Facility Bill Insurance paid per contract
$1,687Endo Excision Surgeon Bill Insurance paid per contract
$2,082.19Pathologist Bill Insurance paid per contract
$3,416Colo-rectal Surgeon Bill
Insurance paid per contract
$2,800AnesthesiologistInsurance paid per contract
$683Asst Surgeon: Excision BillInsurance paid per contract
$285Asst Surgeon: Colo-rectal BillInsurance paid per contract
$2,250My co-payI paid in full
$235,429.60Total(updated 4/4/19)

Camera

Surgery Photos

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 🙂

Comparison photos of July 2018 and November 2018 Endo lesions on bowel

But here are the rest of my surgery photos I received at my post-op appointments (click on them to enlarge):


Camera

Recovery Photos

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.

Let’s hope there’s no need for future surgeries!

(Updated May 17, 2019)


Endometriosis & the Pancreas

Diagram of liver, stomach, pancreas, and gallbladder

I’m sitting here going through my very old post-surgery emails and I’ve stumbled upon one from December that made my jaw, once again, drop. A study was published in late 2018 about a woman who was discovered to have an endometrial cyst inside her pancreas…WHAT? It’s super-duper rare.

As usual, this isn’t meant to scare you. Just inform you…

As you know…I’m prone to following studies down rabbit holes and satisfy my curiosity. Today is no different! Read on, dear Reader…read on!

What & Where is the Pancreas?

I’ve often heard of the pancreas but never looked into where it was and what it does. I know it’s somewhere in my torso…but never bothered or cared to know more. But now? I’m all over it!

It’s a gland about six inches long that’s smashed in the abdominal cavity, surrounded by the liver, spleen, small intestine, stomach, and gallbladder. The pancreas aids in digestion by secreting lovely secretions affectionately called pancreatic juices. It also helps regulate blood sugar via pancreatic hormones: insulin and glucagon.

Symptoms of Pancreatic Endometriosis

From what I’ve been able to read, it appears that symptoms may include:

  • Epigastric pain (pain or discomfort below your ribs);
  • Left upper quadrant pain (the section of your torso on your left : belly button to boob and everything in between); and,
  • Unexplained weight loss.

Diagnosis & Treatment

The good news is it appears that tissue growth and/or cysts are oftentimes spotted with CT scans, MRIs, or endoscopic ultrasound. These may lead physicians to exploratory surgery. And it seems that resection (removal) of the diseased portion of the pancreas is the best option for treating pancreatic Endometriosis.

If you suffer from symptoms and want to begin steps to ensure you DON’T have pancreatic endometriosis, I do believe you’ve got quite the journey ahead. Document your symptoms, track your diet and any triggers, and begin by pursuing imaging studies (xray, CT, MRI, ultrasound, and endoscopic ultrasounds). Talk to your doctor. Do understand that it’s very rare, but there are documented cases below:

Science!

Okay, on with the studies, including the one that brought me here!

A study from 1984 was of a 36-year-old woman who had complained of epigastric pain and was being seen at a hospital in New York. Fourteen months earlier, she was hospitalized with acute pancreatitis and sonogram studies were normal. Now back in the NY hospital, she had no prior history of surgeries, no abnormal periods, her pain was not during her periods, and she didn’t have a problem with alcohol. She had right upper quadrant fullness and lower left quadrant discomfort. Palpitation of her torso was normal, as well as a rectum exam and blood tests. An x-ray showed a hiatal hernia and a distorted duodenal bulb (a portion of the small intestine that is up by the stomach). And a sonogram revealed a small buidup of calculi in her gallbladder as well as an cyst inside her pancreas. A laparatomy was performed; they couldn’t feel any stones in her gallbladder, but located the 4cm cyst in the tail of her pancreas. Piercing of the cyst showed a yellow-ish fluid. They removed part of her pancreas, as well as her gallbladder and spleen. Biopsy of the cyst proved it was lined with endometrial tissue, and hence her diagnosis of pancreatic endometriosis AND no evidence of any prior pancreatitis was found…Her symptoms subsided after her surgery. Go figure.

In 1986, a study was published of a 40-year-old woman who had recurrent left flank pain for a year and a half. When palpitated, doctors could feel a mass near her kidney, but all other physical examinations were normal. An angiography showed the upper part of her left kidney was compressed. A procedure known as an excretory urography was performed and the left side was shown to secrete less, due to a mass which had displaced her left ureter. An ultrasound led doctors to believe a cyst was present. When punctured, the cyst oozed a chocolate-colored, thick fluid. Exploratory surgery was performed and the 8cm cyst was visualized compressing the kidney. While there, her surgeons also found a cyst on her pancreas. Pathology showed the cysts were Endometriosis.

In 2000, a 47-year-old Japanese woman had complained of epigastric pain, back pain, nausea, and vomiting. A CT scan and ultrasound found a cyst on her pancreas. A surgery was performed to remove the diseased portion of her pancreas and pathology confirmed it as an endometrial cyst.

In 2002, a 21-year-old Korean woman went to the hospital because of ongoing epigastric pain and she had lost 20 pounds in one year. She had no prior surgical history, her periods were normal, and her family history was normal. A physical exam and blood tests were also normal. A CT scan showed a 4cm cyst on her pancreas. She underwent a pancreatectomy to remove the infected portion of her pancreas and the biopsy showed it positive as Endometriosis. The rest of her pancreas was normal.

A study published in 2004 was of a 34-year-old woman who was admitted to the hospital due to severe abdominal pain. She had intermittent left upper quadrant pain for the past three years. Between those painful flares, she was pain-free. A CT scan showed an 8cm mass in the tail of her pancreas and a chest x-ray showed a nodule in her right lower lung lobe near her diaphragm. She underwent a CT-guided biopsy to take a sample of the cyst on her pancreas with fine needle aspiration and they collected 100ml of dark brown fluid from the cyst. A few imaging scans later, and doctors decided to do exploratory surgery. “Small plaque-like lesions” were found on her liver and diaphragm. Other lesions were found on her spleen and they found the cyst on her pancreas. A portion of her pancreas and spleen were moved, as well as the suspicious lesions. Biopsy confirmed the cyst in the pancreas was Endometriosis. The authors of the study stress that, although rare, “a cystic lesion in the pancreas must have endometriosis in the differential diagnosis.” At least consider the option…

In 2011, a 35-year-old woman had recurrent, severe pain in her upper left abdominal quadrant. The pain had persisted for three months and an examination revealed a cyst inside her pancreas. A portion of her pancreas was removed and a biopsy showed it to be an endometrial cyst.

A July 2012 study was of a 42-year-old woman who was hospitalized due to epigastric pain. A CT scan revealed tissue changes around her pancreas as well as possible cancerous growths. Her pain resolved, but later at a follow-up exam, another CT found additional tumor growth. Physical examination and bloodwork was normal. She was referred to a local university hospital’s pancreatic team. More CT scans found swelling and tissue changes around the tail of her pancreas. Pancreatitis was suspected. An MRI led the team to suspect Endometriosis. They learned that she had a history of irregular periods (but they weren’t painful), and that her sister had Endometriosis. Since the imaging studies were not conclusive, exploratory surgery was performed by a team of gynecological and gastrointestinal surgeons. Evidece of old Endometriosis activity was noted in her Pouch of Douglas, she had a chocolate cyst on her left ovary (they removed her left ovary), and cystic tissue was found on the pancreas; which came back from pathology as Endometriosis.

In 2016, a study was published of a post-menopausal, 72-year-old woman was preliminary diagnosed with pancreatic cancer and was referred out for further testing. She had increasing abdominal pain in the upper left quadrant of her torso. And her medical history included an umbilical hernia, an appendectomy, hypertension, her gallbladder was removed, a hysterectomy, and a surgical hernia repair. “There was no known history of pancreatitis or endometriosis.” Her abdomen was bloated and tender, especially in the area of her pain. Imaging studies showed a mass on her pancreas. Pathology came back as Endometriosis, and she was symptom-free five years after her surgery.

A February 2017 study is of a 43-year-old woman who had previously been admitted to the hospital for one day of severe epigastric pain and was diagnosed with acute pancreatitis. A CT scan and an endoscopic ultrasound at that time indicated a cyst on the tail-end of her pancreas. It was pierced with fine needle aspiration and brown fluid was retrieved. Fast forward to three months later and she’s at a medical clinic due to worsening abdominal pain, fatigue, diarrhea, anorexia, and having lost 15 pounds in the past three months. Although she had a previous diagnosis of Endometriosis, she did not have painful periods. Additional imaging studies confirmed the presence of the cyst and surgery found the 16cm cyst inside the tail-end of her pancreas. That section, as well as a portion of her spleen, were removed. No other evidence of Endometriosis was found. Pathological examination showed the cyst was full of “gray-green cloudy fluid” and came back as pancreatic Endometriosis.

In December of 2018, a 26-year-old woman reported abnormal periods and was hospitalized due to left abdominal pain. It hurt even when she wasn’t on her period. Her medical history only revealed that she had a prior c-section, but no history of Endometriosis or pancreatitis. A CT Scan found a 7cm cyst inside of her pancreas, which was confirmed in both an MRI and endoscopic ultrasound. A benign tumor was suspected and surgery was performed to remove part of her pancreas as well as her spleen. A biopsy was performed and it was found that she had endometrioma insider her pancreas. She underwent surgery and they removed the portion of her pancreas, as well as a bit of her spleen which was affected by the mass.

Resources:

Acta Radiologica Open (Article; Sept. 2016) – A Rare Case of Pancreatic Endometriosis in a Postmenopausal Woman and Review of the Literature

Europe PMC (Abstract; Jan. 2000) – A Case of Hemorrhagic Cyst of the Pancreas Resembling the Cystic Endometriosis.

Gastroenterology (Article; June 1984) – Endometrial Cyst of the Pancreas

HealthlineWhat’s Causing my Epigastric Pain and How Can I Find Relierf?

Journal of Minimally Invasive Gynecology (Abstract; July 2012) – Endometriosis of the Pancreas (you may access the full article here)

Korean Journal of Internal Medicine (Article; 2002) – A Case of Pancreatic Endometrial Cyst

Pancreatic Cancer Action NetworkWhat is the Pancreas?

Southern Medical Journal (Article; Oct. 2004) – Endometriosis of the Pancreas Presenting as a Cystic Pancreatic Neoplasm with Possible Metastasis

Surgery Today (Abstract; July 2011) – Pancreatic Endometrial Cyst: Report of a Case

The Japanese Society of Internal Medicine (Article; Dec. 2018) – A Rare Case of Pancreatic Endometrial Cyst and Review of Literature

The Journal of Urology (Abstract & Article; Jan. 1986) – Pancreatic Endometriosis Presenting as Hypovascular Renal Mass (you may access the full article here)

World Journal of Gastroenterology (Article; Feb. 2017) – Pancreatic Endometrial Cyst Mimics Mucinous Cystic Neoplasm of the Pancreas

~ 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

Pain & Poops: Then & Now

Happy poop with daisy on it's head

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:

Summary of November 2018 pain and symptoms

And here’s my pain journal summary for January of 2019:

Summary of January 2019 pain and symptoms

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!

Table of poops for Nov 2018 vs Jan 2019

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.

(Updated April 5, 2019)

The Bowel Resection is Coming!

Diagram of the human large intestine
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.

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

Photograph of Dr. Mel Kurtulus and Lisa Howard before surgery, titled Resilience; photo taken by Brandy Sebastian
Dr. Mel Kurtulus and I before heading in. Photo courtesy of Brandy Sebastian

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!) 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.

(Updated March 28, 2019)

Ways to Better Prepare for Anesthesia

1st person view from an operating table with surgeons looking down at you with the words "Count backwards from 10, 9, 8, 7..."

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