Diagnosed with Proctitis - Seeking Advice on Proctectomy or Proctocolectomy

Hello all!

I've had my ileostomy since June of 2023 (barely a year), and recently I started experiencing mucus from my rectum in January, which was manageable as it was occasional. However, I've been dealing with increased mucus output, along with bleeding and abdominal pain lately. After a visit to the ER last night, I was diagnosed with proctitis. I've spoken with my surgeon's office, and we're scheduled to meet on the 19th to discuss the possibility of a proctectomy or proctocolectomy as a solution. This is all happening so quickly, and I'm feeling torn about what to do. I plan on discussing this with my care team, close friends and family, and others who may have insights or advice. Turning 25 on Saturday added an extra layer of anxiety for me, as this is a major decision. Has anyone else been in a similar situation, especially at my age? I'd appreciate any advice or insights you can offer or even just a conversation about it.

Thank you all in advance for your support.

Welcome to the community, new friend..🤗

You have come to the right place, Mio...👍

There are a few of us who have gone through the "procto" for short. Just recently, in fact..😔

A.k.a. Kenn or Barbie butt surgery.

At age 25, I developed colitis which became Crohn's a.k.a "UC" or "CD"..

Or "IBD". Please read my profile to see my journey. But in short, had I known the toll these medications would take on me for the next 37 years, I would have gone the route of surgery to remove the lower colon, rectum, etc., and have a bag at 25 rather than at age 55..

You have a lot to consider for options. Choose wisely.

There are meds placed into the rectum to reduce inflammation. Orals too.

Some have controlled their condition without surgery.

I had proctitis in 2023 requiring 3 hospital visits. Since my 2016 surgery to remove the diseased colon, we had hoped to reconnect the small colon to a stump of intestine left by my surgeon. This was the plan. Proctitis developed, preventing it.

No meds could control the output

of mucus and blood. The stump usually sheds mucus. But blood?

Mine developed CD in the stump.

Proctolectomy as a Kenn butt was done 10.10.23. I am still recovering from the issue but am an exception to the rule.😔

 

You are gonna be overwhelmed with peeps chiming in with their personal journeys.. Take them to heart.😳

Research how this Kenn butt surgery could save your life - or rather years of side effects later on from these meds.

You have heard the saying "the meds are worse than the disease?" True that!!

Hindsight is 20-20 now that you are here.👍

Hands down, I would have selected the Kenn butt at age 25 -

My only regret now 37 years later.😔

It won't be easy selecting surgery because of your age.. but age is a factor in recovering big time.. age and confidence too. You are gonna be ok. Great advice is coming. Sit tight.. we will help ya.☺️😀

Hi Mio, if it could be controlled with the meds, I would try going that route as the meds nowadays are a lot better than when I had a full proctocolectomy 30 some years ago when I was in my mid-30s.

G-Day Mio, I had my colon removed in 2004 and had a J-pouch, but after 18 years of big-time problems, I decided to go for a complete ileostomy and got my butt sewn up as well. I wish I had done it back in 2004. Mio, get it done, my friend; you will never have trouble with mucus again, and at your age, healing is a lot faster. I was lucky I had no pain down at my butt; some people do, but it heals fast at 25. Good luck and keep us up to date. Regards, IGGIE

Not as young as you, but I got my protocolectomy due to the hardened mucous balls inside me while having my temporary ileostomy. They were found in a colonoscopy, which showed that my colon was not working. I got the procto. No rectum, no rectal stump, and no colon with my end ileostomy. It has proven to be my solution and is working well, but we all have different situations. Yes, talk to your care team. See what options are available, but with the procto, there is no turning back. In my case, I did not care as I was in too much pain and had no quality of life.

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

You could try the least invasive treatments first. I'm still able to tolerate the proctitis symptoms. I take Bentyl for cramping but only need it occasionally. Also, my doctor prescribed an enema with short-chain fatty acids, which seems to help. Most importantly, you need to be comfortable with your decision.