Category: Lynch Syndrome

Ups and Downs

(Second week after a full colectomy.)

Recovery— or I guess life— has its ups and downs.

The first rosy flush of “up” in my last post was followed by a couple days of down — of pain not diminishing as quickly as I hoped (or becoming less masked as I tapered back on the meds), of mysterious bruises and swellings that are probably normal and not worth a call to the doctor but the source of niggling worry because what if they are not?

And also the sadness of coming face-to-face emotionally with what I already knew logically — that surgery is crest of a hill but not the end of the journey. This goes beyond my physical recovery. I haven’t really gone into the details of how, in these past months I’ve struggled with focus and direction in my creative / career efforts, but at the same time allowed for the fact that the health situation would have me reasonably, distracted! And I’ve hoped that as I move past my issues of health, there will be a moment when I’ll again feel the desire to finish any of a dozen unfinished projects — and even the hope that one project will call to me louder than the others, providing a clarity I’ve been sorely lacking. Of course, rationally, I knew it was unrealistic to expect that this desire and certainty would descend upon in my in my first days home from the hospital, but irrationally, I was still disappointed that they didn’t.

But after a day or so, the mystery swelling went down in my body and I decided I could be gentler with myself in spirit. After a week of convalescence with my mom I headed home with Paul and we had a really nice Easter with family where I was feeling good. The next day, I received word that the pathology report for my surgery was back:

NO LYMPH NODES INVOLVE, NO CHEMO!

Which is, of course, great news.

I returned to a standing weekly client meeting, and feeling frisky, even shot off some emails, feeling cocky, yes, I know it’s less than two weeks, but energetically, I’m past it, it’s downhill from here!

And then on Tuesday afternoon, I got hit by a mysterious new pain, between and under my ribs. It was alarming in that it was sharper, and in a different location than any previous post-surgical pain — but I know from experience that even the most dire-feeling Am-I-having-a-heart-attack? Am-I-dying?? pains are usually just “trapped gas.” Knowing this, I went outside to “walk it off,” only to return, defeated, after only half a block. I spent Tuesday night and Wednesday day and night curled around a hot water bottle.

But, now it’s Thursday morning and though I’m not 100%, the pain has subsided and shifted in a way that supports the idea that yes — even though I paged my doctor and considering the emergency room at one point — it was likely was just trapped gas that is running its course, if not so quickly as I may wish. There’s also a chance that this episode may be the first in a series known as “the new normal”— a non-serious but painful pain, that, as it comes and goes, will need to be analyzed (did I eat the wrong thing, or too quickly, or in the wrong order?), and ultimately incorporated—ie. balanced and juggled—along with the rest of life.

“Balancing and juggling” feels thematically appropriate to a tarot card I pulled last night. (Very recently I’ve been introduced to tarot cards, and have been drawing a card each morning and evening, not as prophesy, but as a way to learn the cards and think about life.) I drew the Two of Pentacles.

Also called “The Juggler,” the Two of Pentacles is about trying to keep all our earthly balls in the air— work, family, money, projects, food, clothing, shelter etc. And, of course, holding our temporary bodies together for as long as we can while we’re here!

I think I have a lot in common with the dude pictured on this card: We’re both running a little to stay underneath those “infinite” balls that we’re juggling or balancing— or both. Our shoes don’t match, but at least we’ve got some on — even if the same can’t be said for pants! Our boats rock on topsy, turvy, turbulent seas, but they’re still upright and moving forward. Sure, it all feels a little precarious, but somehow, nothing’s crashing to the ground. Maybe because we’ve both had some practice with boats and balls and waves all moving up and down, and understand that, tiring as it can be, there’s some fun in doing the dance, seeing how long we can keep it all going!

So Far, So Good – Post-Op Report

(Getting a full colectomy, and the first days of recovery.)

Last Thursday we woke up bright and early… or dark and early I guess, since the sun wasn’t up at 3:45 am. I took my last shower with special anti-germ chlorhexidine soap, and we headed to the UCLA Ronald Reagan Medical Center for my 5am check-in.

There’s a conveyer belt of pre-surgery rituals: I signed in at an admin area then reported to a curtained pre-op room, where a nurse handed us packets with six pre-soaked chlorhexidine wipes and instruction sheet for wiping my entire body down again, as well as special swabs to clean out each nostril (not a Covid thing, apparently, just standard). I changed into a hospital gown, reassured multiple folks that there was no chance I was pregnant, signed consent forms and got hooked up to an IV. Everyone was very kind and nice. The “team” all introduced themselves, etc. A second surgeon working with my surgeon reassured me that their surgery plan prioritized two things: 1) a successful operation that would remove any cancer, and 2) preserving as much as possible of my colon, per my request.

Then they wheeled me in to the operating room. I wanted to to see the “robotic” equipment, since my surgery was to be robotic if needed. It was a little disappointing because the arms were retracted, and there weren’t any Transformer-looking appendages—which makes sense as they probably keep those sanitized and wrapped until the very last moment. But here’s a couple of images stolen from the internet of what things might have looked like after I was knocked out:

Then the drugs hit my bloodstream and I was out. I woke up in recovery later in the afternoon, and was very happy to hear that the surgery had gone smoothly: They were able to do the surgery laparoscopically (as opposed to open) and had been able to keep about six inches of my sigmoid colon.

A few other interesting (to me) details: 1) Along with having (had) a longer-than-normal sigmoid colon, I also have a slightly longer-that-normal rectum. I’m hopeful that this extra length will be helpful as my body adjusts to its new normal functioning. 2) During my first surgery, in Australia, years ago, the surgeons opted to make the small-to-large-intestine connection (the anastomosis) behind my stomach, which is apparently quite unusual. This made the present-day surgery a little longer and more complicated for my doctors, as they had to reach around behind the stomach to do some of their work.

I stayed the night in the hospital and was able to have some visitors, like Paul, my mom and my brother. Everything was pretty painful, but I know how important it is to move in order to get my digestive system working again, so I ate some broth and and a bite of mashed potatoes, and got up to walk around the area, pushing my IV pole.

Currently, I’m at my mom’s apartment, enjoying the quiet, and the luxury of having food cooked and dishes taken away when I’m done. The first couple days was mostly pain management (Tylenol and Oxycodone), very slow walking and resting. But now I can (in limited fashion) read, write and watch TV in the evenings. For the next 4 weeks, I’m supposed to eat a low-fiber diet, which is pretty much the antithesis of everything I normally try to eat, i.e. meat, not veggies, white rice not brown, processed breads and crackers, not nuts or seeds or grains. I’m not supposed to lift more than five pounds or do abdominal exercises — even though I end up doing those inadvertently just getting in and out of bed. I asked my surgeon a litany of questions like, “can I sleep on my side? what if I twist around? can I lie on my stomach? can I do yoga?” and he pretty much said that it would take blunt force trauma to pull apart what has been sutured together. That doesn’t really jibe with the idea that lifting five pounds would be injurious… so as my energy returns I’ll have to figure out some of that out. For the moment, I’m happy to have other people do the lifting!

My least favorite part of the day is when I have to take an anti-coagulant medication called Lovenox —through a needle jammed into my belly! I’m lucky though, because instead of having to self-administer it, Paul does it for me—best husband ever! Apparently cancer patients are more prone to blood clots for longer than most people after surgery, so instead of two weeks, we’ll be doing the shots for 30 days.

For those who are waiting for the “poop report,” so far, there have been no toilet emergencies (though, TMI, my surgeons “oatmeal” example is proving apt)! At the moment, my entire digestive tract is recovering, and, somewhat counter-intuitively, I am taking a prescribed stool softener because the painkillers tend to slow everything down. I’ll have a better sense of my new normal as time goes by, but so far… so good!

Last Day With Colon

(On the last day before my full colectomy, I prepare for surgery)

Tomorrow is my colectomy. 

My surgery 20 years ago was what they call a “hemi-colectomy,” because it removed about half my colon. Some friends came to visit in the hospital back then and brought me a get well card adorned with a bold, graphic:

;

It was funny. I really enjoyed that. I don’t know what can graphically represent my situation after tomorrow. Maybe this? 

,

PREP DAY:

My pre-op prep started last night with a shower using a chlorhexadine soap that is supposed to block germ growth to prevent infection. After using it, you can’t use lotions or moisturizers, so I currently have elephant skin. I’ll take another shower today and another in the morning before we head to the hospital for our 5:00 AM call time.

For the rest of today my duties are: 1) Don’t eat any food that’s not transparent (which, since I’m too lazy to make yellow jello or clear broth, just means a water fast), 2) Take two kinds different antibiotics three times during the day, and 3) drink two bottles of magnesium citrate (which interestingly (to me) after 20 years of colonoscopy preps, I’ve never had before).

Halfway through this protocol, I can say that in terms of bitterness and nausea inducing qualities, one of the antibiotics is actually worse that the magnesium citrate, but we’re making it through. In between trips to the toilet, I’m prepping for convalescence, which is pretty much like prepping for a trip. Paying bills, set up an auto reply on my email, doing laundry and dishes and whatever tasks I’ve been putting off but now seem worth doing at the last minute. 

NEW VIDEO PROJECT

I’ve also been bossing Paul around, having him get some shots on his phone camera that I might be able to use later for one of the videos I have in my head. It’s possible that my newfound passion to do this YouTube / podcast thing is just my subconscious distracting me from the realities of the realities at hand, and my energy for the whole thing will be short-lived, but…

As threatened in my previous post, I recorded my first video yesterday! A video-version of my last post, “How often will I poop after a colectomy?”

It was a good reminder of the joys of producing the simplest of projects. We got the camera and mic set up just in time for the tree cutters, leaf blowers and house remodelers to rise in chorus outside my office window. Once these noises tapered off toward evening, the young woman in the apartment downstairs came home with a girlfriend and they had a nice 3-hour gabfest in the room right below mine. I finally recorded anyway, with the rise and fall of their conversation — that distinct rhythm and lilt of two women in their early 20s — in the background. 

My initial takes were so rambling and disjointed that I ended up reading from script instead of looking into camera which I’m expecting to be weird and off-putting, but in the end I just loaded it onto the hard drive for “Future-Barrington-who-has-learned-how-to-edit” to deal with. The perfect is the enemy of the good enough, right? 

I’m sure Future-Barrington is going to be happy with … everything.

It’s fine. It’s all fine. I’m not worried at all!

How Often Will I Poop After My Colectomy?

(Two days before my full colectomy, I talk in too-much detail about what my “poop-life” might be like afterwards, because everyone wants to know but doesn’t want to ask.)

Although it’s a little awkward to talk about poop and our pooping  equipment, I’ve had some anxiety about what life will be like after a full colectomy, and I can imagine that is you are looking for info because you’re in a similar situation, you might be having some concerns, too.

FIrst, a quick anatomy refresher of the large intestine. Moving upwards from the “bottom” (ha ha, pun)  we have the anus, the rectum, the sigmoid colon, the descending colon, the transverse colon, and the ascending colon which attaches to the small intestine.  (BTW “Colon” and “large intestine” and “ large bowel”  are pretty much all the same thing, although technically, I think rectum and anus are not part of the colon but are part of your intestine.)

image temporarily stolen from shutterstock for educational purposes

In the past, I’ve already had my ascending and most of my transverse colon removed so my upcoming surgery will remove the remaining transverse and descending colon. I’m hoping the surgeon will be able to leave part of my sigmoid colon, although he doesn’t make any guarantees. His ability to do so will depend on where the blood supplies are. My small intestine will be attached to either the remaining sigmoid colon, or directly to the rectum.

When I tell people I’m having a colectomy, one of the first questions they ask is “does that mean you’ll have a bag?” And the answer is “no.” As I understand it, a bag (“ostomy”) comes into the picture with a different procedure called a “proctocolectomy,” which involves removing the rectum as well as the colon. It’s not the procedure I’m having.

A bit more info about the colon, as it informs the poop question: The reason a person can live without a colon is that the heavy-duty digestion happens in the stomach and small intestine before it ever gets to the colon. The colon’s job is just to pull the water out of the digestive slush, making slush dryer and more formed, and allowing our bodies to use the excess water for hydration.

Without a colon, poop gets expelled along with the water…

So, does this mean I’m destined to have diarrhea for the rest of my life? Will I still have control?

These were questions I asked the gastroenterologist who does my colonoscopies and the first surgeon I met with, but disconcertingly, they didn’t have too many details. Because their jobs are colon-centric, once a patient’s colon removed they don’t have a lot of contact with their patients. My first doctors said something like ”you’ll probably deal with diarrhea, but probably not incontinence.” (They were more concerned with getting rid of the cancer, which is as it should be. But still, “Probably not incontinence”  is not exactly a comforting phrase to hear.)

The second surgeon I talked to also noted that he doesn’t get a lot of data after the fact, but put forth an estimate of “about six bowel movements a day, the consistency of oatmeal.” (The writer in me appreciates the specificity of that sensory detail— although when you think about it, different people prepare oatmeal in different ways.)

What I really wanted was a report from someone who had actually been through what I’m about to go through. I asked friends, and searched Reddit and YouTube, but for some reason, didn’t find much discussion of my exact situation…

Until, someone recommended a Facebook support group for my genetic mutation (Lynch Syndrome). It turns out that people with Lynch Syndrome get colectomies fairly often and that every year or so, someone in the group asks some version of my “what will my poop-life be like?” question, and each time. dozens of  people are generous and share their experiences.

I’ve collected some answers that specifically address a “total” colectomy attaching to sigmoid or rectum. To protect privacy, I’ve omitted all the genetic details and paraphrased here and there, but kept all the details pertaining to – you guessed it – pooping!

I have my small intestine connected to a few cm of my sigmoid colon. My QOL is great! I have very soft stools and go often. I keep baby wipes on hand, and if I’m traveling, take Imodium. I eat anything I want. Some foods don’t digest as well, but for the most part, these are small things.I am 54. It has been 1 month since my total colectomy. It has been a learning curve for sure. I am doing good taking things slow. The hardest part is just learning your new normal and how your body is. I was really good at being hydrated in the beginning and now I am slacking. I go the bathroom way more often but I am learning what foods I can eat that I am not running there right away either.
2 months out: It was much better than I expected. It’s different for sure but it’s totally doable. At first it’s scary because you think you’re going to poop uncontrollably but while you do more often, if you can survive a colonoscopy prep, you can hold it until you get to a toilet. I would suggest a bidet! Total colectomy 6 months ago. The first week in the hospital was rough, but once I got home everything stabilized and now my life is pretty much the same as it ever was. I use the bathroom a little more frequently (3-4 times a day at most) and certain foods “run” through me but it doesn’t prevent me from eating and enjoying them. My physical activity is back to normal (after the first 6-8 weeks recovery.) I can do anything I did before.
7 months out. I had a lot of problems with random stomach aches, but that has now gone away. Frequent bathroom trips after eating and sometimes very unpleasant after eating something that doesn’t agree with me. After eating it stimulates me to go to the bathroom within 30 minutes and not just once.  8 months ago. have no regrets. My quality of life is just as it was before. Eating right definitely helps with not needing the bathroom so much. I went back to work in 2 months. I run my kids around, i shop and travel and have an active social life.
10 months out. It’s not as bad as I thought TBH. I was straight up freaking out. The beginning is tough, pooping 12 times a day. All liquid. I still poop about 6 times. It’s like coffee grounds. But certain foods trigger me like sugar. I can’t do a lot of green veggies, the gas is horrific. I stay away from raw veggies, I seem to be ok with cooked non green veggies 🤷🏼‍♀️I did have a couple accidents when I sneezed or coughed hard but I have full control. Also, no more trusting a fart! It’s not an option unless you’re sitting on the toilet.10 months after total with ileorectal anastomosis I would say maybe 2-3 stools on average daily. It doesn’t seem excessive. No real urgency issues. Sometimes after eating certain foods I can tell I need to go but it doesn’t have me running; I can control when to pass it
I’m 52 and had total colectomy 18 mths ago. Reconnected small intestine to rectum. I do everything I did before. I was out of work 8-10 weeks. Not painful just soreness. A lot of bathroom time the first few weeks bc your body has to relearn things but it gets better over time. Listen to your body and you’ll learn what foods you don’t do well with. For me it’s dairy, sugary foods and nuts. Not to say I can’t ever have them but they’ll cause more bathroom time so if I’m going out or to work I don’t have them. Total colectomy almost 3 years ago. Small intestine connected to rectum. Took my recovery time to learn my new normal but I feel fantastic and I can do anything I did before.  I’ve gone from 9-10 bms a day after surgery to 2-3 a day and sometimes less now. It’s all in figuring out which foods do not work well for you. 
(3 years) For the first year i had a hard time adjusting, i went to the bathroom about 20 times if not more a day. My life was miserable. I still go a lot but have learned not to eat before I go out. I have to leave the table mid meal to use the bathroom. 4 years out. I had the ileorectal anastomosis done 4 years ago. I think the only thing diff now is you go to the bathroom 4 to 5 times a day but there’s no rush. I eat what I want but you may pay later with hot or spicy stuff. Big surgery but I was back to work in a month..
5 years out from surgery plus chemo: I have all but 3-6 cm of my colon removed. I have an anastamosis from the small intestine to the sigmoid colon. My bowel movements have stabilized to 3-6 per day. I can eat anything, but don’t digest fresh vegetables very well. The hardest part is that sometimes my bowel movements smell awful, as they can still be fermenting, depending on what I’m eating. It can be embarrassing in public bathrooms. My bowel movements are loose and watery and I need to make sure I’m drinking enough water. I keep Imodium with me for long trips and when I need to go several hours without a bowel movement.6 years out.  It was not fun for the first year. I had no control, had a hard time going even to the grocery store. But got so much better after that. 
It’s been 7 yrs.. I have to remember no spicey food..💩🔥not a lot of fiber..and drink a ton of water…they said I wouldn’t be able to eat nuts or popcorn again..but I can eat it like a champ..it took me a  good year to figure out my eating.7 years small intestine Connected to my sigmoid colon. I do struggle with dehydration because I’m not a water drinker. My bathroom times are 1-3 daily depending on what I ate. I have full control.
I had a total colectomy 14 years ago. The recovery wasn’t bad. The only lasting side effect is constant diarrhea. I go about 10 times a day. It’s not uncontrollable but frequent. 9 mos. I’m doing great! I go to the restroom shortly after a meal and go a few more times a day than someone with a colon. I was absolutely petrified with fear of quality of life after surgery, but I have to say I am pleased with the outcome

So that’s 20 different people with 20 similar, but different experiences. What seems clear is that everyone is a little different, but mostly within a spectrum. I won’t  know my exact experience until I get there, but I have a general sense of what to expect, and some goals to aim for, which makes me feel better. I hope, if you’re in a similar situation, it makes you feel better too!

Write about THIS (All the Woo-Woo, #2)

In a previous post, I talked about my energy-healer friends C_ and D_ supporting me after my cancer diagnosis, and how Woo-woo visitors from the beyond joined our sessions. You can catch up here.

On my third session with C__ and D__’s another relative comes to visit. They think his name is Robert. “He’s dressed,” my friend C says – “like a Quaker, but he’s not a Quaker.” “He’s dressed like Benjamin Franklin,” D_ clarifies. (Apparently she can see him too?) “He’s like a Puritan, but he’s not a Puritan — he’s not someone who’s afraid of a drink.”

I’m getting the picture—my ancestors were Scotspeople, hard working pragmatists who likely did enjoy a drink. Judging from their descendants (the ones whom I’ve met or been told about) they weren’t much for coddling and were advocates of “getting on with things.

Which is in keeping with what Robert tells them to tell me. You’ll come through this. You come from “strong stock”  and there are “still important things you have to do.” *

Pretty much the same kind of tough love as I got from Beatrice, but with a little something added. I am, of course, interested in what “important things” Robert sees on my life’s to-do list. It’s fun to imagine doing something important, especially if it’s something that other people might think is important, too, or that might involves rewards like accolades! or money!! Though I’m guessing it might be writing a student referral letter that gets them into school, changing their life, or some step in my own development, like achieving more inner peace or paying off my college loans. If it’s like other predictions in my life, the trajectory will be that for a while I’ll remember and wonder in the back of my mind if every little thing is the important thing… and then I’ll forget all about it. And then much later I’ll remember again and, looking back, assign importance to to something I did in the interim when I wasn’t thinking about it at all.

But Robert isn’t the only one with a message for me this evening. My friend C__ says there are “others” who have come to visit as well. (As of now, for want of something appropriate to call these energetic beings from the beyond, I’m just going to call them, collectively, “the Woo-woo.”) C_ says the Woo-woo have some advise for me, and that advice is:

Write about THIS.

“THIS is in all caps” she says, relaying their vehemence. “Write about THIS.” 

“What does that mean?” I ask.

“I guess it means THIS, right here. What you’re going through now.”

(Brief digression: If C__ were the type to consciously or unconsciously embellish, this might be the moment. Nothing commits writers to life like a some project they feel they are “destined to write.” However, this is not some deathbed situation where I require new purpose to give me will to live, and C_ knows this. Also… I don’t think she’s not the type to make up the Woo-woo. So, if she says the Woo-woo is saying I should write about THIS, then she’s hearing the Woo-woo say I should write about THIS.

Okay. So what part of THIS are they referring to?

  • My health journey, either this particular cancer or, the mutation behind the cancer—the Lynch Syndrome? 
  • My journey into more WOO-WOO terrain, (such as the Woo-woo telling me to write about THIS”). 
  • Or just LIFE in general? A cancer / woo-woo combo?

Is my assignment from the Woo-woo is to keep some kind of Lynch-Syndrome-Life diary? That would be… serendipitous? Since it’s something I do already do here in this blog (albeit on a sporadic basis, and always with some sense of guilt for not spend the same time looking for a real job or writing things that I could show my agents or at least submit to literary journals). 

Although, when I mention I’ve already been writing about THIS, C_tells me, she thinks I’m supposed to make it easier to access. “Like a YouTube or a podcast.” I feel like this must involve at least some interpretation on C_’s part. A bunch of Woo-woo’s in Ben Franklin era clothes can’t be saying “make a YouTube channel” right? 

I don’t ask this aloud, but C_ answers anyway, “Not Youtube specifically, but something where people will see it or hear it.”

Here, I’ll mention that if you are reading this post, you should feel special, because out of the 7+ billion people in the world, fewer than 20 are likely to read this post,** and you are one of them! For me, one of the more freeing aspects of this blog is that almost nobody reads it. The almost is key. As a writer, I work and revise and publish on the premise that someone will probably read a post I write. I love my handful of subscribers (hi guys!) and the idea that a stranger might randomly happen upon any post at some point in the future. But there’s also security in being mostly lost in the online crowd, free from criticism, cancellation or multiple opinions for how I should revise my writing or my brand or whatever. 

It’s safe.

Which is NOT how I feel about talking to a camera on YouTube. I don’t love looking at myself on camera, feeling foolish and vulnerable and conscious of the growing waddle under my chin. Editing video is always tedious and frustrating. And I have mixed feelings about uploading them. What audience are they aimed for? Other people who have Lynch Syndrome, I guess? YouTube videos, like blog posts, can exist without getting any views. Is that what I want? Or does an unwatched video feel somehow sadder than an unread post?

I am resistant to the idea. Thinking about it makes my chest tight.

But in these last months, I’ve turned a corner in my appreciation for video and audio. While I’ve combed through a lot of medical journal articles, which were for informative but anxiety provoking, it was a relief when I could find explanations in video or a podcast form, delivered by a person. Personal delivery made information easier to digest, assuaged some of my anxieties, and reminded me I am not alone in my experiences. I was very grateful.

Would the Woo-woo tell me to Write about THIS simply because writing will be therapeutic for me? (Maybe… it could be, right?) Or are they pushing me to stretch and put myself out there for other people—to inform them or help them feel less scared and alone?

And, just to circle back around… could this effort —whether big or small, or the seeds of something else — be important?

I’m going to have to make a YouTube video, aren’t I? 

F*ck. 

*Robert doesn’t make any great efforts to prove his existence or his exact familial connection to me, but when I ask my mom later, it turns out there are plenty of Roberts on branches of our family tree across multiple generations.

**Extrapolating from historical statistics of average posts on this blog.