Looking for experiences - total colectomy

Hello! I'm so sorry that you have the Pten mutation.

I had a total colectomy with ileorectal anastomosis (TC-IRA) in 2023. It was laparoscopic davinci robotic-assisted surgery. I have Mutyh-associated polyposis (MAP) which guaranteed that I would have colon cancer at some point in my life and before surgery, I had over 150 polyps removed over many years of surveillance. All precancerous. Luckily, I started having colonoscopies at a young age, so we were aware of something genetic going on. I'm 68 and started having colonoscopies in my 20's, they called me a polyp farm. Unfortunately, my colon stopped cooperating with annual colonoscopies any more (tortuous and couldn't reach two colon sections), hence the surgery. Mine too, was not an emergency, so I had time to research, contemplate, etc. The surgery went really well and I was released after 2 days, driving within a week. Obviously, I needed to heal up (6 incisions) and get my digestive system working in a new way since my small intestine is connected internally to my rectum and is now doing the job of the large intestine.

Beyond the actual surgery, my active life has not changed considerably, with one BIG exception: my diet and output. After surgery, the diet is low residue, no surprise there since my digestive system needed to gradually adjust. 3 years later, I have sort of figured out my diet, which has been a challenge. I do have other digestive issues (upper gerd, gastritis) so that needs to be considered, as you mention, we are all different. Most challenging is that I also have no gallbladder (removed in 2008 due to polyp and stones) and that significantly impacts my digestion now as bile dumps directly into my small intestine whereas before it would dump into the large and the bile would be absorbed. Now, it basically goes straight through me causing a more complicated reaction to foods. I'm still trying to figure out some sequestration remedies to absorb some of the bile. If you keep your gallbladder, you're experience should be different (better).

I eat several small meals.
These are my challenges that I'm dealing with re: food and output:
Gas producing foods: No raw vegetables, beans, cabbage, etc.
Irritating (anal) foods: no leafy greens, spicy foods, onions, garlic, limited tomato sauce, greasy foods (though, I do have some chips...probably shouldn't), anything with skins, fried foods.
What I mostly eat: Chicken, meat, canned green beans, cooked carrots, peeled or canned fruit, low fat greek yogurt with strawberries, little bit of bran cereal (to build bulk), fig bars, overnight oats, sourdough pretzels (always a little bit hungry and keep these with me for travel, etc.), burger with a lil ketchup/mustard, goat cheese, chocolate (probably shouldn't). I have maintained the same weight since surgery. I track my foods and responses on my phone just to try to isolate any offending foods.

Interestingly, my surgeon (a little cavalier about the whole thing, imo), said to eat 35 grams of fiber (soluble or insoluble) daily. I tried psyllium husks (Metamucil) for a long time and it made me feel sick, so stopped. Also, in hindsight, I believe that it was way too much for my small intestine to handle. I ended up developing a "blind loop" at the anastomosis site discovered last year thru MRI and colonoscopy. Apparently, it happens to some who have had this surgery. I do appreciate the fact that I don't need a colostomy bag because of the internal connection. So I do accept that there are trade-offs. The blind loop is a pocket where waste can stagnate and cause issues like SIBO and other bacteria growth. I tested twice over 2 years and I do not have SIBO, so that's good. The bottom line to this is that I don't want frequent diarrhea and also don't want to cause a small intestine blockage. It's a dance, really, one in which I will be playing forever. 🙂

I have good anal control so have never had any "accidents", travel, shop, walk, hike, live a good life. The tradeoff is not having colon cancer. Because of MAP genetics, I do still have annual upper endoscopy, sigmoidoscopy (to check rectum, anastomosis) and other scans such as thyroid (solid nodules), breast MRI and Mammo (alternating every 6 months), and regular bloodwork to check for any deficiencies like B12. All is good so far! I also had a total hysterectomy in 2003 or I would be heavily surveilling that area as well.

Overall, I had no choice. I would definitely do it again. We, who have genetic cancer issues, need to be super vigilant because of the cards we were dealt. I've come to terms with that and accept all of the challenges (although begrudgingly sometimes). We are in charge of our health with the help from good doctors.

I hope I didn't ramble too much and would be happy to answer you questions. I will also check for private messages, if you have any specific questions. It's a lot to think about...

@bevjoy Hi and thank you so much for your answer. Sorry that you have also a genetic mutation. From what I read you have like me numerous exams!

I am 53, I am autistic and ADHD (very late diagnosed), like mentioned in my bio I have learned so much in the last 4 years about myself and cancer as I had already 2 breast cancers with side effects.

Since the diagnosis I have now regular surveillance for my thyroid, no more mammograms or MRI because I don't have anymore breasts and I have no idea what are going to be the surveillance. Anyway there are also endoscopy, colonoscopy, ultrasound for my kidney (was born with only one), for my ovaries, my liver, my skin, etc. so many exams.

I am always surprised when someone in your country (guessing that you are in the US) tells me that they got so many polyps removed because in my Canadian province I got no from the gastro and the surgeon when I asked about that due to the numerous polyps... I did some research and I am guessing it is related to how they get paid having found in my province that they are paid only for 2 or 3 polyps removed... (They are paid regarding how many acts they perform). So no polyps removal for me...

Regarding meals/food, adaptation to the new normal after the surgery is a very huge obstacle for me because I am autistic as mentioned, and so this kind of change can be impossible for me to do. I don't eat some foods because I can't stand the texture and/or the taste.

I am happy to read that you don't have accidents but I know that it can happens, some people experience also issues with back pain, B12 deficiency, etc. and none of these things had not been mentioned to me, and with my hyper and/or hypo sensitivities these possible things are also a huge obstacle... And no one is taking neither in consideration my challenges regarding my pelvic zone being in menopause.

I am supposed to stay at the hospital for 5/6 days after the surgery, but an hospital is an hostile sensory environment for my hypersensitivities. And when I try to educate health care professionals about my needs 90 % of the time I got crickets for answers because I don't match their outdated knowledge about autism...

Anyway sorry for the ramble and thank you so much again. 🙂

Hello,
About 3 months ago I had a total colectomy with ileo-anal anastomosis, due to cancer, so I only have my rectum left. My diet has had a major change and my dietician has recommended a low fiber diet to limit diarrhea (which often occurs). I eat mildly spiced chicken, fish, turkey (nothing deep fried) some cooked veggies, carrots, green beans, peas, squash, potatoes. If the food is very liquidy, it will go right through me so I need to eat binder foods with meals like rice, bread, potatoes, pasta. I do take psyllium fiber which seems to help. I'm always looking for new ideas of foods I can tolerate to give me more variety. Also, seems I am always drinking to keep hydrated as not having a colon limits fluid intake from foods.
One problem I'm dealing with is due to my internal hemorrhoids (which have never been a problem before) my bottom is often sore from the frequent bms, (currently about 6-8 times on a good day but right after surgery much more) so I'm in process of trying to find a remedy for that. So far the docs recs haven't helped.
It's a big change for sure. I also have a genetic condition. Best to you!

Sorry, I made a mistake- my surgery was with an ileo-rectal anastomosis.

@bethbeep Thank you for your answer. I have also internal hemorrhoids, I am sorry, I know how painful it could be. There are part on my long list of things I have to take in consideration.

And I didn’t get any suggestions for how I could manage them after the surgery.

I can eat similar foods to bethbeep and am always looking for new foods to try. The binder foods mentioned are all so important to help alleviate some of the issues. I, too drink tons of water, though I'm trying out the practice of limiting my drinking too much liquids with a meal (supposed to help with slowing things down) and drink more between meals. Either way, I drink a LOT of water and sometimes sprinkle a little bit of IV solution into my water for the added vitamins and variety. I'm still learning which vitamin and mineral supplements help/hurt the issue. Bethbeep, have you discovered anything that doesn't irritate?

I've been thinking about poupette over the last few days. I am not personally familiar with autism, but realize it is a spectrum and can be different for each individual. What you are facing is very daunting and you've been through so much already. As you're learning, there are significant trade-off's from living without a large intestine. But, with that many colon polyps seen during your scope... I understand why your doctors are encouraging you to have the total colectomy. I'm hoping that along with this support group, you find additional resources to help you make this very important decision. Please keep us posted.

@bethbeep

I'm right there with you! I had mine in 2024 with just the rectum also. My surgeon told me I would have loose bowels the rest of my life. I'm also diabetic so I'm always thirsty which as you say continually having to stay hydrated. So, all that means is I don't do anything without knowing where every rest area, porta potty, McDonald's, etc are. Traveling has become almost non-existent. If I was to fly, are the toilets going to be vacant? Immodium seems to help some and even the off brand version is an added expense and you can't take too many everyday. My hiney gets really sore sometime, so I sit on a donut type cushion. I also had prostate cancer which also has its issues.

Hi,
Geno77- Thanks for sharing. I'm the same about wanting to know where bathrooms prior to going out for an activity. I have the generic imodium and agree it does help. I do have days with minimal to no diarrhea, and somewhat normal bms, which is so nice. For sore bottom/hemorrhoid pain sitz baths help and I've been advised to use zinc barrier cream (I use butt paste brand) frequently during the day to calm down the area. I have learned about and now have a toilet foot stool which helps you have more complete bms, and a bidet so don't have to wipe/pat/blot the sore area which makes it hurt more.

Bevjoy- I just started taking Align probiotic for gas, (often gassy bms), recommended by my gastroenterologist. Will take a while to see if it helps.
A nurse mentioned to me about making my own electrolyte drink - cup of water, pinch of salt, a bit of honey and lemon squeeze. I also drink a diluted Nuun electrolyte drink (It's nice and light, and I add lemon) which I've been tolerating. Since we drink so much water, which can decrease our sodium level (I'm not a doc but I believe this is true), I sometimes make rice using bone broth as well, (high in sodium). I still take calcium supplement for bones. I'm not taking my multi vit now as I'm still getting chemotherapy and not supposed to have additional folic acid.

I will share if I discover any new foods I can tolerate. I know, don't you get sick of the same old stuff?? I do eat garlic and onions in a cooked meal which seems to be okay for me. I do tolerate mac and cheese, but too much cheese at one meal can lead to diarrhea (i.e. cheese omlette). I tolerate lactaid cottage cheese, and drink unsweetened soy milk at meals (tastes like regular milk to me) for the calcium and protein. Bevjoy, you mentioned fig newtons (good to know!) I like and tolerate Archway soft oatmeal cookies and sometimes a small portion of Kozy Shack rice pudding. Also I sometimes use Premier Almond Milk protein shake when I make oatmeal or cream of wheat.
It's quite a journey! And I hope to be able to travel once I've had more time to acclimate to these changes.

@bevjoy Autism is indeed a spectrum, and as we say in the community when you have meet one autistic person, you have met one autistic individual.

I am 53, I know that I am autistic for 5 years, and ADHD for 1 year. I have begun to make a list of what the surgery could change in my life. And for now I can’t simply accept these changes due to how my brain works, while I am very aware of the consequences of not having the surgery. I am still recovering from my second mastectomy done in January having side effects. While having increasing menopause symptoms with no possible treatments due to my cancers.

And due to my genetic mutation I need to have multiple exams/appointments for the rest of my life while advocating for myself in an hostile healthcare environment absolutely not suited to my needs. And with healthcare professionals who have no idea, in addition to autism, about my genetic mutation. So during the 15 minutes appointment I need both to educate them about my neurodivergences and the mutation… But at least now 90 % of them know what it is, I haven’t met yet the last one needed. And so as they don’t about autism/ADHD I can’t get suggestions from them on how to deal everything that involved the surgery.

The positive is that I don’t have, yet, a colon cancer neither a cancer somewhere else as my thyroid, chest, oesophagus, stomach, liver, 1 ovary, my only kidney, my uterus, my skin are regularly checked for possible tumour too from now. In September begins the new round of tests. Due to how the system is made I am not seen in my whole, but by pieces…

Anyway, thank you. ❤️