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 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!

Updates from Limbo – Decision Made

Still traversing this expanse of time between diagnosis and colectomy surgery. It’s been about five months which which seems crazy. The length of time is partly on me — hopping providers and looking for options— and then due to crowded schedule of my surgeons.

This window of time—before the event and the after of the event—has a limbo-like quality. I’m living my day-to-day life in a completely normal way, but also I’m distracted by the waiting. I appreciate this time, because I feel good now, and I might not feel so good after. But also, there’s an element of wanting to get on with it — to get to the other side of the uncertainty about how life is going to be.

But the time has also given me time to process, and even change my mind about stuff. For instance: After much consideration, the ovaries are going to stay.

When all of this is behind me, I have no doubt that I look back at these months that have produced absolutely no screenwriting and wonder “what the hell did I do for all that time?” I will state for the record that I spent many hours researching, both statistics related to my specific situation, and menopause in general. (This is deserving of its own post that I’ll hopefully write in the future, but in the meantime, read or listen to this book.)

Then I had a meeting with my surgeon where I cried twice while presenting my various facts and figures, and neuroses. She was super-nice, saying that there were valid reasons for either keeping my ovaries or removing them and she’d support whatever decision I wanted to make. She was also super-smart in giving me a deadline for a decision. We both wanted her to be able to give her surgery slot to someone else if I wasn’t going to use it — and she could probably see the likelihood of me digging a research hole into the center of the earth if someone didn’t stop me. She told me to let her know in a week and I agreed.

During that week, I talked to two women, both friends-of-friends, who have gone through surgical menopause, and they shared their experiences. During this time, I’ve been so inspired hearing from people who have gone through their own unique struggles and emerged on the other side. I’m repeatedly amazed by people’s strength and resilience and their emotional generosity in sharing their stories with me just because I ask.

Both of the women I talked to noted that my decision, in the end, would come down to “trusting my gut.” This is difficult, because my gut and I have a long history of communication problems. Is it that I’m not a good listener I’ve wondered, or is my gut a little dysfuntional? (Since my soon-to-be-removed colon is part of my gut, I know there’s some kind of metaphorically snarky comment just asking to be made here, but I don’t know exactly what it is.)

In hopes that my gut would pull back on giving me the silent-treatment, I decided that on decision day, from the moment I woke up, I would not speak to anyone, not look at any screen of any kind, not read or even write until I made a decision.

I woke at about 7:30.

A little after 2:30, I turned on my computer in order to message my surgeon with my decision.

The seven hours in between were very… interesting. Interesting and a little boring. Elongated and super-slow, but also not slow. A relief, but also mildly excruciating.

I don’t know if my gut ever shouted, but in the end I felt happy with my decision—or happy to have it made. And my half-day experiment gave me a tiny sample of a new adventure I am planning, with both anticipation and dread… a 10-day Vipassana course.

(Ummm, yeah, this is is also worthy of a separate post in the future— stay tuned!)

Lynch Syndrome Awareness Day

Yesterday, March 22, was Lynch Syndrome Awareness day. Today I posted a version of this to Facebook:

I’ve dragged my feet about posting, I think partly because I tend to resist to “cancer awareness” campaigns. Maybe it’s the Midwesterner in me that is skeptical about making a “big fuss” out of things. I suspect the attention-seeking of mostly being a grab for marketing dollars and wonder, WHO is all this AWARENESS helping?

But then I think about this: Two decades ago, when doctors discovered my first colon cancer, it was already a Stage 3 tumor the size of a small fist. It wasn’t until after my surgery that I learned I had Lynch Syndrome—a genetic mutation I’d never heard of. Today, someone with my family history could ask to be tested, and, if positive, could be screened starting at age 20. So WHO does Lynch Syndrome awareness help? It would have helped (and has helped) ME…and it might help someone you know, too!

So “Happy Lynch Syndrome Awareness Day!”

Related post: “I Have Lynch Syndrome.

A Visitation (All the Woo-Woo, #1)

“You had a visitor during your treatment.” 

(my friend C_, who sometimes see things that other people can’t)

A few years ago, for a scripted project, I read several books about research on reincarnation and near death experiences. There are a number of reports that make it seem likely that there is life beyond our own lives – that our consciousnesses don’t just end.

From there, it’s not a far jump to think that sometimes those other planes might touch our own at time.

Despite this, when I talk to people who tell me about conversing with their “angels” and “guides,” my reflexive thought is, really? Intellectually I am open and curious. At my emotional core, I’m a skeptic.  

I was called out on this by S__, a therapist I booked a session with to help me process my latest health crisis. She brings alternative methods into her practice so over the course of our session she “pulled some cards” for me, and consulted her guides. She concluded I was living with uncertainty. Who isn’t? I asked. But she said that I was haunted, more than others, by uncertainty and thoughts around death. Again I pushed back (at least internally) because I don’t think of myself as someone who dwells on death (after all, there are so many more immediate things to worry about!). But, then I considered more, and accepting we are shaped by our childhoods, and given that my childhood was repeatedly marked by periods of intense uncertainty that accompanied my father’s illnesses with possibility of death looming over each one, I had to admit she probably wasn’t wrong. 

S__ said to me, “Life will be different for you when you believe in something after death. When you know there is.”

I agreed, though I wasn’t sure how the observation was helpful. Of course it would be more pleasant to believe in something like that, but if I’ve lived half my life without knowing, I couldn’t imagine what would need to happen to change that. Still, I dutifully recited the meditation script she gave me for the next week and ordered her book recommendation* from the library.

A week or so later my two friends D__ and C__ came to our apartment. They are taking an energy healing class where they need to accrue some practice hours, and they generously offered to do three of their sessions with me. The session itself was similar to a reiki treatment, although there was more movement. At times it felt like a pulling and moving of energies, though it’s subtle, and I never forget that I might be imagining it.

When the treatment was over and we were sitting afterward, C__ said, “You had a visitor during your session.” 

She described this visitor as “a tall, stern lady who stood very straight”* who stood at the head of the massage table during the treatment.

“She looked a little like you. I thought maybe was an older version of you, because she said her name was “B.” But then I got that it wasn’t B, for Barrington, but spelled B E A, short for Beatrice. She didn’t say much, just that she was there and that you’re strong, you’ll get through this.”

I gasped. I’ve only known one Beatrice. She was the mother of a serious boyfriend in my 20s, someone I’d considered to be almost a mother-in-law. Everyone had called her Bea. She had died almost exactly two years previous to the day of our session   Though I’d never thought of her as “stern,”she was tall, with good posture. People had observed we were similar. In this moment, I was struck, less by certainty than by emotion. Tears welled up when I thought of her coming to give me encouragement for my situation, and also evidence of some continued existence after life just when I had been asking for it! I’m here, she’d said.

I think this would make a good ending for the story, but it is not the end. 

C_ and D_  returned a few weeks later to do a second healing session, This time, C__ again saw Bea, and this time Bea was holding hands with a younger man, whose name Caron intuited also started with the letter B. Bea said this man was known to me, although she (Bea) knew him better. That he had struggled earlier in life, but now was doing better. And that I would remember who she was referring to. I wracked my brain, but I didn’t remember. I couldn’t think of a single mutual acquaintance whose name began with a “B,” much less a dead one…

“Wait…” C_ consulted her pendulum, then said, surprised, that she didn’t think the man-whose-name-began-with-B had passed over. He was still alive. That was interesting! But not that helpful, since I still couldn’t think of anyone. I let it go. Not everything needs explaining, and ,of course, a skeptic doesn’t need to go chasing belief.

Some time after this, I got a call from a sort-of cousin. His stepmother was the sister of my mother’s father. He and my mom spent time together as children, then lost touch for decades before re-discovering each other in their 70s. His name is Bob.

I’ve met Cousin Bob in person only twice, but he will occasionally call. Whenever we talk, there’s usually a point where Cousin Bob brings up childhood memories involving relatives who died before I was born and haven’t really heard of. My mother almost never talks about her father’s side of the family. Which I guess is how it’s possible that I was caught by surprise when I heard Cousin Bob say “something, something, your great-grandmother, Beatrice.” 

I asked my mother, and she confirmed that, yes, I had a great-grandmother named Beatrice, and recollected that yes, people had called her Bea. And, yes, she was a stern woman, “We were all scared of her when we were kids.” I recounted Bea’s words, You’re strong, you’ll get through it. My mom said, “Yep, that sounds like her.”

So, to recap: My great-grandmother was named Beatrice, and the person most closely connected to her that I also know is a man who’s name begins with “B.” He is, without deep-diving into his life, someone who had struggles earlier in life, but is doing better now…

I had wondered, what would need to happen to make me believe? And then this happened.

And S_ was right, it has changed things. The transition has been more subtle more than dramatic, but it’s there. My immediate circumstances are the same — none of my visitors (there have been others now) have hinted at what decisions I should make about my health or career. Confusion still abounds— but I’m considering a different sense of proportion. There is a new question I am contemplating:

What does it mean if one’s singular life on this planet is not the entire measure of one’s existence, just a segment of something larger? 

* Book recommendation: Journey of Souls by Michael Newton, in which the author interviews people under hypnosis about their existence between reincarnated lives.

Is it Time to Kondo My Ovaries?

Guess what? I have a date for my surgery—April 7!

It’s a little more in the future than we’d originally envisioned, by about a month. Which gives me some time to do what I do best… over-think it!

Part of the reason for the delayed date is that is that we needed to find an available time for not just one, but two surgeons. One surgeon to remove my colon and another to remove my ovaries at the same time.

Wait, what? You’re thinking, if you’ve been keeping up so far, when did the ovaries get involved here?

It goes back to that fun Lynch Syndrome chart that tells us that while the risk of colorectal and endometrial cancers are the highest, the risk of ovarian cancer is also pretty high (between 8-38% according to the chart). When someone has a high risk because of a genetic mutation, the option is always on the table to remove the risky organ as a prophylactic (preventative) measure. If I have my ovaries removed, my chances of getting ovarian cancer are decreased by 95%. (Yeah, I know it seems like it should be 100%, but for some reason it’s not.)

For years, I’ve been doing ultrasounds and a special blood test for a marker called CA-125 to look out for signs of ovarian cancer, but both of these tests are felt to be very limited—definitely not as sure a bet as removing my ovaries. So for years, doctors have been checking in with me to see if I want to get rid of my ovaries, and I’ve been saying “Guys, not yet! Can’t you see I’m still using them!” This is because even though I’ve had my uterus removed (a hysterectomy), my ovaries continue to pump out hormones, which means I haven’t yet gone through menopause, and there are definite benefits to that.

But now… I’m probably within a few years of not using them so much (they are producing less hormones, approaching a natural menopause) and, of course there are going to be some holes cut into my abdominal region anyway… why not do two-for-the-price-of-one? (Note: I’m fairly certain I will NOT get two surgeries for the price of one! But it will be going under anesthesia only one time, getting cut into only one time and I’ll can maybe max out my insurance deductible just once.)

Given all this, it seems like it makes sense to, a lá Marie Kondo, thank my ovaries for their service, for the joy and protection they have provided, and let them go…

… Except that when I met with to my surgeon the other day, she said something in passing like “yes, even though mortality rates go up with ovary removal, in makes sense to blah blah, medical stuff…”

Wait… what was that about mortality rates?

Thus far, no one had mentioned this fact before now, but it pinged my radar enough to spur some internet digging, which turned up articles like this one, from 2017, called “Bilateral Ovarian Removal Associated with Increased All-Cause Mortality,” and one from 2013, called “Long-term Mortality Associated with Oophorectomy versus Ovarian Conservation in the Nurses’ Health Study.” In short, women who have their ovaries removed before their natural menopause die sooner, either from heart-related issues, or just… other stuff. As my doctor put it “we don’t exactly know why.” (However, there are also articles like this one, that say the difference in mortality is are less or perhaps negligible if the removal happens after age 50. Others say 55. One assumes that one’s age of natural menopause is a factor, but would be hard to incorporate into a study.)

So maybe, I’m thinking now, I should hang on to my ovaries a little longer — maybe they’re still sparking joy after all?

And maybe my overall risk ovarian cancer / dying from ovarian cancer isn’t quite as simple as the scary chart would indicate. My overall risk of ovarian cancer is lower because I’ve had my fallopian tubes in the past. The study sited in “Ovarian Cancer risk after salpingectomy” says the decrease in risk might be as much as 50%. This paper I kind-of-partly-undertand called “Features of ovarian cancer in Lynch Syndrome” seems to be saying that the survival rates for Lynch relate ovarian cancers are statistically higher than for sporadic cancers (not that I’m keen to test it and find out) due to being diagnosed at an earlier stage and also to having different properties.

Mortality aside, I’ve also discovered there are a number of more immediate effects to menopause — maybe exacerbated by being a sudden, surgical menopause—that I hadn’t realized. While we associate hot flashes to menopause, no one has ever sat me down and talked to me about potential hair loss, fatigue, anxiety, depression and brain fog. These symptoms are not a given, and they are not life threatening, but they are quality-of-life threatening.

Needless to say, I’m going to be ruminating…

Cartoon of Ovary on red carpet
Cute illustration totally stolen from someone’s old blog – credit at bottom.