Protocolectomy Complications and Concerns

Hi, this is very new for me. I don't really talk much to people due to a lot of anxiety. But I thought I would be brave and reach out and ask if anyone has information or ideas or has been through this, regarding what I'm going to ask.

I have 2 stomas, an ileostomy and a urostomy. I've had lots of surgery and recently had a proctocolectomy, where my whole colon and the majority of the rectum were removed.

The anus was left in place.

However, my bottom is worse than ever, with pain and agony, and lots of stiff dark brown cones coming out, not mucus like feces; almost it is.

It should not do this as the colon is gone and the majority of the rectum is removed.

Do you have any idea what this could be?

Also, what is the surgery called if they removed the tiny piece of rectum, sphincter, and anus to resolve this?

It's making me so unwell, and the stoma is not working well either.

I appreciate your time and any help in this. Thank you so kindly.

Go have it all taken out, sewn up, and enjoy.

Having some output from the rectum is normal. The mucus can dry out and look brownish. The level of pain you are experiencing is not normal. You need to talk to your surgeon about this. It's possible that you'll need the anus removed too, but that is a difficult surgery, and you may need to recover a bit before they do that.

I also have 2 stomas; in my case, it is a colostomy and a urostomy. My surgeon and I are discussing the same surgery right now.

Thank you for your message, so you still have your rectum and anus intact.

I had my rectum and colon removed 5 months ago, with a tiny, tiny piece of rectum left. They said I should not get anything from the bottom, but it's worse than ever. I could have had the bottom sewn up, but I was scared to at the time.

Now I want it done and am telling the surgeon it needs to be done.

My life is awful; pain just sitting at the moment hurts, and standing is agony. Stuff comes out most days and feels like the worst pain ever that you can imagine.

Are you also wanting or needing to have your bottom sewn and removed?

Hello there, glad you're reaching out on here. I had my entire rectum removed when I had my j-pouch removed and everything sewn and closed, otherwise known as a "Barbie butt." I no longer have UC in my rectum, which I had during my five j-pouch years, and I no longer need meds to control it. Everyone's recovery is different. I was sewn internally and had pain and discomfort for up to eight weeks or so, and I wound up sitting askew for a while. If it's an option for you, I would discuss this with your doctor. You're the one who has to live with all of this, and you deserve any option that will get rid of that pain.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Thank you so much, your message helps a lot. Yes, I was too scared to have it done, first of all, so I just had my rectum and colon taken. But the pain is worse, and the stuff coming out of the bottom is constantly happening. Your encouragement is what I need. I need advice, and it helps to know things. I just hope they don't refuse because I was anxious previously to have it done.

Happy to share my experience, and I'm glad it was helpful. Do you mean you're concerned that they will refuse because you were anxious about rectum removal before? We all learn as we go along this journey, and we're not the same at any two points along it because our experiences, including pain levels, change. If you are certain that you want to give yourself the best chance at getting rid of those pesky symptoms and your pain, then put that out there to your doctor. You know more now; you're experiencing unwanted symptoms NOW. My surgeon said, "Are you sure? That would mean I have to remove all of the work I did (yeah, ok doc, a little arrogant, and the work WAS beautiful, but ok....) but I know you are the one who has to live with this." I said, "Yep, I am. I'm grateful for all of your handiwork, but I've had enough; I can't do this anymore." You have every right to advocate for yourself. 💪🏻

I still have a rectal stump and an anus. There's a large mass growing in my rectal stump that may need to come out. If we end up going that direction, I will be looking at the removal of the stump and anus.

But I have no pain right now. Something isn't right for you to be having so much pain. You might even consider a second opinion about the pain. The surgery you are considering is major and a difficult surgery to heal from. If I were you, I'd want to understand why you are having so much pain. It just doesn't make sense.

What Alex said.

He gave me the same advice years ago. 👍