Need Advice: Dilating Stricture after Radiation?

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evrobin
Mar 22, 2020 2:36 pm

I am a temporary loop ileostomate. I have a severe stricture in my neorectum, so tight only a gastroscope could get through it on endoscopy. Because my diversion is not 100%, overflow digestion builds up behind this stricture. It is extremely painful. And I might need chemo again, making it imperative I find a solution to this problem.

I called every ET nurse I know. None of them had ever seen this in their careers. With my history of radiation (10 years ago) for rectal cancer, they warn that my stricture may not be able to be dilated.

Has anyone here with a radiation history ever had a stricture dilated successfully?

w30bob
Mar 22, 2020 4:08 pm

Evrobin,

I've had strictures dilated, but I have no radiation history, so I'm no help to you. I realize you're not in the US, and I don't know your money situation, but if I were you, I'd attempt to call the Mayo Clinic, Cleveland Clinic, and John Hopkins and at least see if anyone there has any experience with your issue. I used to be very skeptical of the "Big" always recommended hospitals, but I've learned that with the throughput they see... if anyone has seen something rare or not common... it's those folks. They may also be able to point you in the right direction if none of their personnel are the right folks to talk to. The worst that can happen is you wasted a phone call. Just a suggestion.

Regards,

Bob

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iMacG5
Mar 22, 2020 7:44 pm

Hi Evrobin.  Certainly our situations aren't identical but after radiation, chemo, surgery, reconnection, more chemo, several dilations because of a stricture, then a loop colostomy ,  I ended up with an end colostomy.  I feel like it's a great relief compared to the pain and agony and abscess.  I went to the "Big" guys at the University of Pennsylvania like Bob suggests and together with my team here in NJ we decided on the bag.  It's all good now.

Wish you the best,

Mike

evrobin
Mar 24, 2020 10:16 pm


Did you get a full APR (removal of rectum) or a Hartmann's procedure (leaving behind rectal stump)? If your anus was removed, how did your perianal wound heal?

iMacG5
Mar 25, 2020 1:58 am

Hi Evrobin.  I did not get the APR.  Still have the rectum and anus.  Rectum doesn't know I don't need its services anymore so it continues to lubricate itself.  I don't want to call it a "dumbass" 'cause it's been good to me in the past.

Stay well,

Mike

 
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evrobin
Mar 25, 2020 12:39 pm

Mike, is there still a stricture in your rectal stump? If so, what have you been advised to do about it?

iMacG5
Mar 25, 2020 6:47 pm

Hey Evrobin, I don't know if I still have the stricture because, since I have a colostomy, the rectum isn't in use anymore.  I was given a loop colostomy in 2011.  The thought was if the rectum was not used for some time the stricture would shrink and maybe go away.  I guess that didn't happen so I got the end colostomy about eight months after that.  Don't forget, we might be similar but not identical.  You're probably younger, stronger, more resilient besides Canadian.

Be hopeful as I will be for you,

Mike