Hello...
Hello,
I am new here, so hello everyone.
I am the wife of a newly diagnosed Chron's/colitis husband.
Here's a little bit about his story...
My husband experienced bleeding on and off since being a teenager which he believed was piles. Last October, he lost a lot of blood in the loo and went to the GP. Bloods tests led to a colonoscopy and that led to a diagnosis of ulcerative colitis. He was startled on Pentasa and steroids with no effect. Biologics did not work either. To cut a long story very, very short, he had a subtotal colectomy with end ileostomy last December. The consultants changed his diagnosis to Chron's and then back to colitis. He hasn't had any issues since having the stoma. He has adapted well and regained all of his weight. My worry is that he has a rectal stump still in tact and it continues to bleed. Not massively, but the discharge is always red/brown. Not bright red. Has anyone else had an ileostomy with the rectal stump remaining? Is it normal for it to bleed periodically? How does the stump affect your life?
Simon has had his entire colon removed with no option of a reconnection. He isn't interested in a J pouch and the idea of having the stump removed gives him terrible anxiety as he has PTSD from everything he has been through.
I would hugely appreciate any responses. As I'm sure you all know, this journey is a minefield.
Best wishes,
Worried wife.
Hi @homerthestoma. I completely understand why your husband wouldn't want to endure another procedure. And I also understand your concern with the rectal stump. I can't chime in as I have not had this procedure but I'm sure others in the community will soon. In the meantime I just wanted to send you virtual hugs and strength. This Crohn's journey is not easy. I hope your husband is feeling okay today. Big hugs to you both, Elizabeth (team member)
I had my colon removed in 2007. My story sounds similar to your husband in that it was diagnosis and surgery soon after, but it was less than a week after diagnosis for me. Biologics weren't on the table back then though!
It is possible for UC to remain in the rectal stump, and this requires treatment! He needs to let a doctor know. Treatment may be steroids or something that can be administered anally. I had active UC in my rectal stump, and I used foam enemas for it every night. They may be steroids or mesalazine. They did help, but I had to keep using them or the flare came back. I had quite a lot of pain with mine too, and the urge to empty would often be urgent, so it was a bit of a nightmare when out and about!
I do understand that he isn't keen on the idea of more surgery. I have experienced trauma on more than one occasion when in the hospital, so I get it! But, I think it's ultimately going to need to come out. There's an increased risk of cancer in the remaining stump, so it's something he is going to have to start thinking about sooner or later.
~ Sahara (team member)
