Advice needed please- about to undergo more surgery

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New Member

Date Joined Nov 2007
Total Posts : 3
   Posted 11/9/2007 4:08 PM (GMT -7)   
Hello from England, Im stumbled across this site accidently and find it really helpful. I have a question... I had a sub total colectomy and Ileostomy in 1991 when I was 25 after having Crohns for 5 years, I have never looked back in terms of being almost rid of the disease that is so debilitating although even though now I find it strange to see "Barney" on my stomach ;o)
The doctors thought I had UC so they left my rectum but on having the op they found it was Crohns, the rectum has played me up for years, what with Crohns, abcess's and fistula's and now I am having it removed next Tuesday (13th Nov)
My question is, and im rather embarrased to ask, will I still function normally down below? That is for intercourse and going for a wee excuse my french :o)
I have read a few horror stories on the web and I am now petrified to the point of cancelling the surgery even though I know it is for the best, I am scared that I will have all sorts of troubles and am wondering if it is best to carry on with the discomfort and nastiness of still having Crohns in my bottom even though its horrible and is wearing me down.
I know it will be painful/uncomfortable for a while which is par for the course but I wanted to know if any members had had it done years after a sub total colectomy and their experiences.
All the best to all of you
J xx

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 11/9/2007 4:26 PM (GMT -7)   
Welcome to Healing Well! :-) I'm glad you found us. I had my rectum removed last year and have had no problems at all with intercourse or urinating. Good luck with your surgery next week, and please keep us posted on how you're doing.
Take care,
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06. In remission since surgery. Pain-free, med-free, and very thankful to be healthy again :)

Veteran Member

Date Joined Dec 2006
Total Posts : 1986
   Posted 11/9/2007 4:31 PM (GMT -7)   
I haven't had it done yet, but not because I'm afraid of the consequences, but because with the numerous surgeries I've had, they didn't want to add more cutting. I wouldn't hesitate to have it done if I was still having problems like you are. Thankfully, my fistulas and fissures stopped in that area, I guess because it's not doing anything except hanging out.
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 

New Member

Date Joined Nov 2007
Total Posts : 3
   Posted 11/9/2007 4:33 PM (GMT -7)   

Thank you so much Cecilia,

You are the first person who has had the same as I am going to have next week and your reply has helped me a great deal, put my mind a bit at rest, all I have seen is horror stories and I am too embarrassed to ask the surgeon the implications or to talk to my family/friends about how scared I am

Even just writing down I am scared has helped.....still upper lip for the Brits eh?

Thank you again, I hope you are well and I will keep you posted

Jen xx

Forum Moderator

Date Joined Feb 2003
Total Posts : 1250
   Posted 11/9/2007 7:08 PM (GMT -7)   
I had my rectum and anus removed a year after my inital surgery. Like Cecilia, I've never had any problems in regards to sex or 'weeing' because of it.

You may, however, get phantom rectal pains from time to time. Just like someone who loses a limb can still feel it 'itch', so your body has to get used to it's new plumbing and you may feel like you need to go to the loo in the old way even though nothing is down there. This is completely normal, not really painful, just annoying. It does fade away eventually. The only way I found to relieve it was to go sit on the loo even though I knew nothing would come of it.

Having your rectum removed IS worth it - no more smelly mucous discharge :)
I have had an ileostomy for 31 years now due to UC.
Moderator of the Ostomy Forum
I'm not a complete idiot - some parts of me are missing!

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 11/9/2007 8:27 PM (GMT -7)   
i had mine taken out when i had my colon out in April of 2007. And it wasnt' fun, it did hurt, mainly it itched though. But i havent' had any problems with sex or peeing. Like shaz said, you may notice "phantom pains" what i notice is that if i need to pee really badly, i will also sometimes feel some pressure on that area, but once i sit dwon and pee it goes away. It's not painful, just weird.
Anyway, if you do have it done, some things that helped me were sitting on a soft pillow and wearing a pantyliner and changing it very often, that helped with the itching.
snaej ni tfel eht no cip

Regular Member

Date Joined Sep 2007
Total Posts : 42
   Posted 11/10/2007 3:12 AM (GMT -7)   
Hi Jen.
Im also a Brit and a crohnie. Had surgery in 2006 and rectum removed, never had any problems with spending a penny or intamacy issues.

Which part of the UK are you from? Im North West.

Good luck with your sugery.

Diane :-) xxxx
Diagnosed Crohn's 1994, panproctocolectomy with ileo Feb 2006.

New Member

Date Joined Nov 2007
Total Posts : 3
   Posted 11/10/2007 3:36 AM (GMT -7)   
Thank you to all of you, that really has made me feel alot better now, its good to know others who have been through it, sometimes you can feel quite alone, so this has really helped.

Diane- Hi, I live in Berkshire, hope all is well up North with you, nice to see this site is a global one ;o)

Take care one and all, I will post again after the surgery- thanks again xxxx
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