Finally, Surgery Is in Sight!

It’s been quite a while since I’ve come on the platform, I hope all are well. 
To sum up my situation in a nutshell, I was diagnosed with stage 1 colon cancer in December 2023, subsequently leading to a diagnosis of Lynch Syndrome.

In February, I underwent a total colectomy with ileorectal anastomosis, full hysterectomy (ovaries gone, too.).

After the surgery I was struggling with accidents, and the sensation that I had to push, when nothing was there. Physical therapy helped diagnose my rectal muscle dysfunction, and the only option is ileostomy. I’m very thankful to know it was actually my muscles, and not my mind.

I was once very eager to get the ileostomy, bc accidents keep me isolated. But now that it’s my only option moving forward, I’m beginning to get nervous, and I have questions.

Could anyone attest to what the changes with digestion will be, if any, when going from IRA to ileostomy? At this point, I have watery stools all the time, which of course is normal. Will that change? Will I be filling the bag as I eat?? 
Did you choose to keep your anus, or opt for the Barbie Butt surgery?? I’d like to get BBS, because I feel it would be pointless to keep a nonfunctional hole. But maybe I’m wrong? 
What is recovery like? Is it a long hospital stay? I read somewhere that it’s 2 weeks in the hospital when you have the BBS bc it’s a large open wound.

I’ve seen some YouTube videos that are pretty helpful, and I understand the need of a waffle pillow, patience, etc. But I’d love feedback from anyone who is / was in my situation.

Thanks!

Hi Anne, If I understand it correctly, you have had your colon removed and the end of your ileum connected to your bowel, so no ostomy, but are considering an ileostomy. I have an ileostomy, also due to muscle dysfunction, so I understand that part of it. What I can say, from my own experience, is that the ileostomy changed my life for the better, big time. Your output will probably still be loose, but there are dietary adjustments you can make to thicken it if you want. You will be in control of your bowels, instead of them being in control of you. I would not recommend Barbie Butt surgery if you don't need it, as it is a long recovery, and some people have a very difficult time with the healing process. A friend of mine couldn't sit normally for about six months and finally had to go for hyperbaric oxygen therapy. Keeping your rectal stump just means that you still produce mucus, which for most people is not an issue. I get a little mucus now and then that comes out when I pee. No biggie.

Terry

G-Day Anne,

I can only tell you about my situation when I got my ileostomy. I did get a Ken Butt and for some reason, I had no pain there after the operation or at any time after. I don't know if it was the way my surgeon did the operation or not, but I do hear how often other members here have had problems. That means you may or may not have problems with a Barbie Butt, but you don't need your anus after, and it is a problem with mucus as well as possible problems with rectal cancer. Talk with your surgeon and ask about ongoing problems if you keep your anus. Regards, IGGIE

I woke up with a Barbie Butt and ileostomy (it was on an emergency basis because my entire colon had died and I was unconscious when rushed to the hospital). There was very little pain after the rectal surgery, but it did bleed a little until it fully healed. 

My output with the ileostomy does tend to be more on the watery side, but you eventually get used to it, and as Terry mentioned, you can adapt your diet to thicken your output if you want to. Everybody is different, so you'll need to find the perfect balance tailored specifically for you. I just try to make sure that everything I put in my mouth is very nutrient packed, because, yes, you do lose the full absorption you once had with a colon.

The removal of my rectum has effectively taken away my risk of getting rectal cancer in the future, which gives me peace of mind.

As far as your hospital stay, that depends on many factors, such as how quickly you heal, whether there are any other complications, and how soon you get your strength back, so it's hard to say. It may be two weeks or sooner, or it could stretch out longer. Either way, it will probably make your life much easier in the long run.

I wish you a safe, successful surgery and a speedy recovery. We're all here rooting for you!

M
xo