(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.)
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!