Possible Procto?

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? ’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 chrons  a.k.a " UC" or " CD"..

or "IBD". pls 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 yrs, I would gone the route of surgery to remove lower colon, rectum, etc.. and have a bag at 25 then age 55..

You have alot to consider for options. choose wisely.

there are meds placed into 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 diseased colon, we had hoped to reconnect 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 shreds mucus. but blood? 

mine developed  CD in the stump.

Proctolectomy as a kenn butt was done 10.10.23. i am still recovering from issue but am exception to the rule.😔

 

you are gunna 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?" TRU DAT!!

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 yrs later.😔

it won't be easy selecting surgery  bc of yur age.. but age is a factor in recovering big time..age and confidence too. you are gunna 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 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 compleast 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 got my protocolectomy due to the hardened mucous balls inside me while having my temp ileostomy.they were  Found in a colonoscopy, 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 working well but we all have different situations. Yes talk to your care team. See what options are available but 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.