Hi - I had my colon removed last April, and my ostomy is doing great. My issue is my rectum still has inflammation and leakage. My surgeon is perplexed because there should not be any blood flow. I had UC/Crohn's disease for 30 years, and it does not want to vacate the premises!
Has anyone had this issue and any feedback? I will not be able to get a J-pouch until this clears up!!
Much gratitude for all of your support and feedback. Much love. Scot
Hi there, Sruch. I also had my entire colon removed with the rectal stump intact due to uncontrollable UC. I had no issues in that area while I had my stoma, but it flared repeatedly during my five j-pouch years.
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Welcome, Scott. I feel you, man.
UC and Crohn's. Our story is similar... 30 to 40 years with IBD, until it was time to have it all removed.
Medications were no help. In fact, due to long-term usage of those meds, who knew the fallout years later?
A few more details, please.
Your large intestine was removed, correct?
The doctor left a stump, correct? If he did, his thought might be to reconnect the small intestine to it later. I don't know your details on this idea he may have for you.
You are not sewn up at the butt hole, obviously. Your stump rectum, that piece he left, likely has Crohn's or colitis. If he isn't aware of this happening, replace him. He's an idiot.
The best advice I can give you, as others who have had UC or CD, is this:
1. Remove everything left.
2. Ken butt surgery, sew up the butt hole.
3. Permanent ileostomy.
4. As a side note, you will never rid yourself of IBD even with all this surgery. Nope. It manifests itself in other symptoms.
I'm sure others with UC and CD will and should chime in and agree with me.
You are still fairly young to nip this in the bud. 🤭 You are here to get some good advice from sufferers like yourself.
No B.S. guaranteed. Research. Ask your health professionals... (but they don't live with it).
I had my first surgery in 2016. Large intestine removed. Yet still kept bleeding for several years.
Crohn's was in the stump. No chance to reconnect. Ken butt 2023. Am I cured of IBD? Nope.
Still got other things related to it? Yep.
You deal with that when the time comes. Why worry now?
You don't fool around with IBD.
Removal of everything down there will give you a better quality of life. Others will agree it's nothing having a bag compared to daily IBD issues.
5. Forget the J-pouch. Known to fail for us.
Good luck. Write me if you want.
I'd be happy to advise.
G-Day Sruch,
Both eefyjig and Warrior have given you good advice. I also had a J-Pouch for 18 years but had 18 years of problems until I got the bloody thing removed 3 years ago. My life now with my wonderful ileostomy is 100% better, and I wish I had gotten my stoma in the first place.
Keep well, my friend, and I will be sending good vibes your way.
Regards, IGGIE
Thank you, Warrior, for all your insights - very helpful to know! Yes, my entire large intestine was removed, and yes, UC/Crohn's is still causing inflammation in my rump with bloody discharge!
Yes, my surgeon discussed the J-pouch option, but it is not an option if Crohn's is still present, and I thank you for confirming that.
I will discuss the Ken butt surgery!
I have such gratitude for my bag versus the 30 years of flares, steroids, and medication, including biologics for the decade.
Appreciate everyone's feedback!!
scot
Hi Eefyjig! Thank you for your feedback in knowing that even without inflammation in your rump, you still had issues with your J-pouch! I wish you well. Scot
Hey Warrior - I also was curious to see how your UC or Crohn's has manifested itself in other parts of your body after you had your colon removed. I thank you!! Scot
Actually, my post is confusing. Sorry - I had my rectal stump intact, and I had cuffitis in that area along with pouchitis in my pouch during my j-pouch years. J-pouch and rectum took turns hurting or, when I was really lucky 🙁 both at the same time. I had no issues in my rectum with my temporary or permanent ostomy; that's what I was referring to in my original post. But we're all different, and it's always best to have things checked out.
