Duration and Recovery Tips for Total Colectomy Surgery

Hi everyone,

I am new to this forum and have spent the last two days browsing and getting some encouragement and support for my upcoming surgery. I am awed at the positivity here and how you are all embracing what life has given you.
I am having surgery - total colectomy, Hartman pouch, and permanent ileostomy.
Has anyone had this before that can guide me as to how long the surgery takes and what I can expect to find on me - other than the bag - when I wake up from surgery?
Also, any tips for accepting your stoma? Right now, the idea and pictures I've seen repulse me, I'm sorry - this is not personal and I'll be there too soon, I am just extremely squeamish.
I want to go into this with a positive attitude. Any tips for an extremely squeamish me to learn how to handle this?

Thank you so much.

Hi and welcome.

Your surgeon should have explained how long the procedure will take.

And how he plans to do it matters time-wise. You should ask him about how he plans to open you up.

My procedure was about 5 hours. They failed at a laparoscopic way in. Had to open me up. You just never know once you're under.

Doing the lap, robotic saves time over conventional. You heal faster. Make sure he leaves enough stoma "sticking out" to avoid sealing and leakage issues. The stoma should not be flush with your skin. Nope.

It goes quickly. Others will chime in. Good luck.

I have a colostomy, which will be 1 year old in just a few days!

My surgeon tried to do the surgery laparoscopically but ended up having to open me up (mid abdomen to pubis) due to me having so much scar tissue, and the whole thing took 7 hours.

I was grossed out and hated to even look at the stoma at first, and changing/cleaning caused some considerable anxiety. After a couple of weeks at home, my home health nurse made me care for the stoma and do the changes while she watched, and it quickly became my new normal and just another body part and routine that's just slightly more involved than wiping one's own butt.

Like Warrior said, as gross as it sounds to you right now, you want that stoma to stick out a bit. A flat stoma that's even with the skin is a no-go!

There are some YouTube videos out there in which some very stoma-positive people demonstrate stoma care, etc. You could maybe watch some of those to desensitize and prepare yourself a little. I would think you'll have a stoma or home health nurse helping you once your surgery is complete, and they will help you. Tell them how you're squeamish so you can get beyond that.

Several months from now, this will be second nature to you, and if you stick with us on this site, you'll be chiming in to help others.

Best wishes for your surgery and a speedy recovery!

G-Day Abee, As everyone has said, it's just a matter of time. Watch and read as much as you can, but mainly watch videos on the computer showing people changing, cleaning, and doing everyday things that you will have to do. In no time, you will be able to empty your bag in a few minutes and do a bag change in 5 or 10 minutes every few days. But the main thing, and remember this every day, is that this will keep you alive and able to do everyday things, and you can dress so no one will know you have a stoma. Stay with us and keep us up to date as things happen. Good luck, we are all behind you. Regards, IGGIE

I can't answer how long surgery takes; that's one thing I never ask my surgeons. I don't want to know myself.

I think changing your bag every day for the first month or so to get you used to seeing your stoma helps. I think it helped me anyway, and your own mindset, that's the hardest part. We're all unique; some learn to live with, then further on accept their stoma in different time frames. Don't lock yourself away from family and friends; go out with them often so you have their support to get your confidence back.

Most of all, "talk talk talk" on here or to family & friends about how you're really feeling; it's the best therapy.

I wouldn't believe anyone that said they loved their stoma at first sight. I can still remember all those years ago, sitting in a chair the day after surgery, looking at my stoma thinking, "Oh my God, what have I done? That looks like some kind of monster on my stomach," but I kept making myself look and slowly got used to it.

Words of Encouragement from Ostomy Advocates I Hollister

Hi. Welcome!

My surgery was a surprise, though it shouldn't have been, as I'd been extremely sick for a while. It lasted 6 hours, I believe. I was told it started out as laparoscopy, but once there, the surgeon realized how bad things were and had to open me up.

I am normally a very positive person; however, I was not at all positive after this surgery. I was defeated, dejected, and depressed. I did not turn a light on in my room for the first few weeks. It was bad. Fortunately, I had a wonderful home health nurse and ostomy nurse to help with getting me the right products and helping me learn.

About 4 weeks in, I started to feel a bit better, and finding this group certainly made all the difference in the world to me. Such a kind, caring, supportive community.

Best advice: ask questions, vent, cry, and laugh with us. We are a fun, honest, and sometimes wacky group!

Thank you Warrior, Kas, Iggie, Ben38, and Nini4

Just came back online and was pleasantly surprised to see so many responses.
I appreciate all of you for taking the time to answer and for your support.
I will definitely be sticking around here and hope you are all right about me getting used to the stoma…

I'm surprised to hear that I should tell the surgeon to keep the stoma sticking out - I would've thought as flat as possible is best and less noticeable to those around me and easier to have intimacy with... Also, if there is a minimum it should be sticking out, don't surgeons know this?

Thank you all 🙏

Abee

I have found that all surgeons are not created equal. I feel very fortunate that my surgeon, while a general surgeon and not a colorectal surgeon, was very well-respected and, after I set some guidelines on what I expected from him, was kind and actually approachable.

Hi Abee, you've already received lots of good answers and advice here. I would just stress that having that talk with your surgeon is important and that having your stoma stick out is also. It will save you many headaches and give you a better quality of life. I don't know how long my surgeries (I had four) took, because I was out (lol!). Don't feel bad about being repulsed by the idea of a stoma or the look of the pictures you are seeing. My first surgery was an emergency, and my ostomy was not something I was expecting. I was disgusted by my own stoma at first, but having the nurse encourage me to start changing my own appliance helped, as much as I didn't want to. I've come to love my stoma, yes, love. It saved my life and also improved its quality. You will get there. You have a great attitude to start, and that's a big part of it. I'm glad you joined our group and let us know how things progress.

Terry

Thank you, Nini.

I am meeting my surgeon next week; I will discuss this with him.
Thank you for the pointers.

Thank you, Terry.

You really are giving me encouragement! You love your stoma - that's huge. You really have a positive outlook. Praying that I get to that place too one day.
I am trying to look at videos like some of you suggested, but I find myself looking away🙈. My goal is to be able to look at a stoma before I go into surgery, hoping it will help.

Thank you, everyone, for your amazing support; this group is unbelievable.

I went into pre-op around 6:00 AM and came out of post-op between 6:00-7:00 PM. No idea how long I was at each spot since I was asleep.

Also, discuss with your surgeon the best spot on your abdomen where the stoma should go. Think about the clothes you wear. And like others mentioned, have that stoma stick out at least an inch. A stoma will swell, shrink, get shorter, then longer. The little beats rarely stop moving. Too long is far better than too short. Too short equals trouble.

My surgery lasted 7 hours. Prior to putting me under, I asked the assistant surgeon how long it would take. She said 4-5 hours.

The next day when she came in, I asked why it took so long. She said I had narrow hips. I'm not sure if she was joking or not because I was still in a lot of pain.

Jokingly, I told her that it was okay and I wasn't in a hurry anyway.

Lots of great comments and suggestions here; won't repeat them.

The only addition I have is to name it. My wife named mine after my ileostomy (Sterling the Stoma from the show Archer), and after my colostomy (Oscar the Ostomy from the show Sesame Street). It helps normalize it more.

Everyone gets to acceptance at different times and in different amounts. Be gentle with yourself. This is a big deal. I now give zero firetrucks what anyone thinks. My bag is often noticeable under my shirt, and in my mind, it is a "them problem" if they have an issue with it.

Best of luck!

My bag and stoma are very visible under my shirt. I'm so used to it I don't give it much thought.

I was at Angel Stadium last night watching the Colorado Rockies fall to the Angels 10 to 7. As I was getting the kinks out of my legs during the 7th inning stretch, my wife nudged me and discreetly pointed out a group of young gals staring at my... bulge. I thought... gals, you don't want to know.

Lol. I had a guy at work ask if I had a concealed gun. 😁

The two of you are too funny!

But I am so confused 🫤 everyone—as in my doctors, nurses, and someone I spoke to who had an ileostomy—all told me it is not at all visible. So, is it or is it not?

Hi Abee, I'm afraid your doctors and nurses are giving you the short answer, the one you want to hear, rather than the long one which is more accurate. Under the right conditions, i.e., with the right clothing and an empty pouch, your ostomy should be pretty much, if not totally, invisible. However, depending on how you dress, it could well be noticeable, and if it's full or close to it, it's pretty hard to hide, no matter what you are wearing. That is just the reality. It will be a learning curve to find out what clothes you can wear that will be both comfortable and also serve to disguise your ostomy. I still wear many of my pre-ostomy clothes, but others I've had to get rid of. Part of it will be determined by where on your abdomen your stoma sits, i.e., how close to your waist. I can't wear high-waisted pants anymore, and only go for hipsters. Everyone will be different according to their own body size and shape. You will get there.

Terry

That is pure comedy!

G-Day ClaraD, First, if your stoma is too short, you will have problems with leaks, so try for at least 1 inch - 25mm. I use a two-piece Hollister bag and only my friends know I have an ileostomy; anyone else can't tell and doesn't know. Talk with the stoma nurse and work out the best location for the stoma to be able to wear the clothes you like. You will be okay; don't overthink it, and in no time, like myself, you will learn to love your stoma. Regards, IGGIE

G-Day Troll (Beachboy), why the change of name? I thought Beachboy sounded great. Regards, IGGIE

Mine is because it has prolapsed, meaning more intestine has popped out. Still trying to find my best solution so there isn't so much sweating under the pouch.