Considering Intestinal Reconnection After Colostomy

UPDATE: The surgeon just called to say that he’d been thinking about me over the weekend & wanted to let me know that he could fix my current stoma & the hernia behind it with local techniques without losing too much of my colon & that it would be a much easier surgery & would mean the stoma would be much easier to deal with after that. It would NOT preclude reconnecting in the future if that is possible for me. I think the possible amount of scar tissue from previous surgeries, the fact that the scar tissue is attached to my bladder, and the unknown of what & when my next cancer treatment might be all combined to give him pause. The fact that he paused gives me pause too, as I was leaning toward the bigger surgery. 

So, I went to the colorectal surgeon to talk about redoing my colostomy since it is so sunken in and small, which means my skin is in horrible condition. I told him the Brava sheets were helping, but that I was looking into the possibility of getting a belt so I could walk more comfortably. The shocker was that he thought he could reconnect my intestines when I was told by someone at UoW that they thought it was not at all possible due to the scarring from the radiation I had 5 years ago. Turns out the radiation basically turned my intestines into cement, even gluing part of them to my bladder, so it's not something they recommend touching. This guy was saying no, I wouldn't touch that part; I'd skip right over the scarring and connect to what's left of your healthy rectum. That was something I never thought of! It's tempting and scary at the same time. He said it would be a complicated procedure and would take many hours of surgery, hopefully robotic, so they wouldn't have to slice me open again, and that if it ended up not working after all, he would end up giving me a permanent stoma that would be better placed than my current one. My current one is in a spot that folds in when I sit up, which just encourages it to retract more. It was nice that the doctor immediately saw that my current situation is not sustainable. I'm going to see if I can contact that doctor at UoW and see if they feel that skipping over the scar tissue is an option in their opinion. The thought of not having this anymore is definitely an attractive option, especially since mine has been retracted since almost the beginning. Plus, even if it doesn't work, he would set me up with a better colostomy placement and better stoma, so that I don't have a retracted, stenotic mess like I do now. He did say that if he is able to reconnect me, he would likely set me up with a temporary ileostomy to allow the reconnected intestines to heal. Has anyone on here done anything like this?

G-Day Dwild,

Talk to your other surgeon and one more and see if they all agree.

Regards, IGGIE

The best advice I can give you in this situation is to do your own research. Don't let a doctor make this decision for you. You have two things laid on the table from two different doctors; you need to weigh the pros and cons and do research to find documentation that you can on Google about the surgery outcomes. Research what the surgery fully is, how they are going to do it, and the risks, infection rates, etc. You need to go based on what you think is the right thing for you. You be the decision maker, no one else. And you do have the option of having the doctor move your stoma to a different location and keep it the way it is.

The best advice I can give you in this situation is to do your own research. Don't let a doctor make this decision for you. You have two things laid on the table from two different doctors; you need to weigh the pros and cons and do research to find documentation that you can on Google about the surgery outcomes. Research what the surgery fully is, how they are going to do it, and the risks, infection rates, etc. You need to go based on what you think is the right thing for you. You be the decision maker, no one else. And you do have the option of having the doctor move your stoma to a different location and keep it the way it is.

Hi DWild, I would say it's how much good colon you have left. You may have more problems, like constant diarrhea after the surgery and poor quality of life, whereas a revision to pull out more stoma is relatively minor. Good luck.

How to Manage Emotions with LeeAnne Hayden | Hollister

It's also important to consider how long you've had the stoma because your rectal muscles have atrophied while not in use. The longer it's been, the worse shape those muscles are in.

I'd definitely talk to your other surgeon and perhaps get a third opinion if these two remain so far apart.

I'm not a big fan of long, complex surgeries. They should be able to move your stoma to a better location in a simple surgery.

Personally, I'd be afraid of the reconnection failing and leaving me with an ileostomy, which is much more limiting than a colostomy. I'd ask the surgeons about that possibility. Get them to give you some risk assessment on that. Given the radiation damage to your colon, I'd expect this to be a fairly high risk. I also have radiation damage and am avoiding messing with my colon as much as possible.

All good points, thank you. I have had the stoma since Dec 2023, so not a huge long time. They did give me the option of simply moving the stoma to a better location, with the caveat that doing that would mean reducing the chance of reversing the colostomy in the future. I am definitely going to do some research and connect with other surgeons who know this field well. They also say that if they ultimately discover they cannot reconnect, I would get a new colostomy stoma in a better spot on my belly. He also feels he would be able to do this without opening me all the way up like the original surgery, which was an absolute bear to heal for me, but he does say that opening me up could be needed; he won't know. Having a retracted stoma has been an absolute bitch, to be completely honest. Not having to deal with it in this form would leave me ecstatic, even if I end up with a new stoma. This is all complicated by the fact that I have the bonus complication of my cancer returning and then having to do either more chemo or whatever next treatment is in order.

I get it. I really do. I can't say for sure what I'd do in your situation. In the end, it's your decision.

Definitely get that stoma re-sited, and hopefully, they will get it pulled out far enough. Your situation with a retracted stoma in a skin fold would be an absolute nightmare.

My surgery was in Aug 2024, so I'm still in the early days of surveillance. So far, what they've said is I'd probably get more chemo if it returns.

It's a very tough decision to sign up for a surgery with the knowledge that the outcome is more than likely unknown. I had a J-pouch, with the third stage being the final connection/reversal. This was a disaster, and twelve months later I went back to the ileo. If I had this knowledge, I would have stayed with the initial ileo. However, I won't die wondering what could have been because I did give it all a shot. This won't assist you much, but it will show you that we here have all challenges to deal with. I am at peace with my decision to go back to an ileo because it was what is best for me. Do your homework and be comfortable with your decisions.

I wish you well.

Very well put, Axl. I totally agree with you.

IGGIE

Hi Susan, You have given great advice here, as usual. I do, however, disagree on one point when you say that an ileostomy is 'much more limiting' than a colostomy. I have lived with both, started with a colostomy and had it for a year before my ileostomy surgery. I can honestly say there are very few differences. I have to empty more often, yes, but really that's it. Someone with an ileostomy is much more likely to have an issue with skin irritation, as did I, but once you've gotten that sorted, it's all good. Someone with an ileo is more likely to have their diet options limited, that's true, and I realize I'm lucky in that regard. I guess I just feel like I need to stick up for ileos, which sometimes get a bad rap!

Terry

It's always good to get a second opinion for sure.

I did have my ileostomy reversed after my surgeon thought it could give me a better quality of life. Turned out he was wrong! The entire thing was a nightmare, and I was glad when 'Mount Vesuvius' was permanently returned to me....

Do your homework. Jot down any questions you have so that you can remember to ask them all. (I always forget if I do not!)

Wishing you all the best!

Gracie

I cannot imagine having a stoma in a skin fold. I have a scar from a previous ileostomy right below my stoma, which used to give me a lot of issues with leakage; but these days, since I have lost weight and my skin is tighter, this is now less of a problem for me.