Any experiences with surgery?

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New Member

Date Joined Feb 2009
Total Posts : 10
   Posted 2/3/2009 6:33 AM (GMT -6)   
My daughter is 18 and has had UC for about 10 years. At first it was controlled pretty well with medication but the flares have become more frequent, she has had some hospitalizations and the meds don't seem to be working as well anymore. The dr. has suggested surgery as he feels it would improve her quality of life. She is a college student now and has missed classes due to extreme fatigue, vomiting and bathroom issues,too. She is afraid to even consider it and worries that it will affect her future fertility. Has anyone here had their colon removed? Can you help us with this decision?

Veteran Member

Date Joined Dec 2008
Total Posts : 511
   Posted 2/3/2009 6:44 AM (GMT -6)   
I'm having my proctocolectomy this Friday and I have found amazing support from the Osotomies forum on this site. Everyone there can give you really great advice and they share their experiences, which has helped me tremendously!

I also have had failed medical attempts, but I've only had UC for 2 years. I know she's worried about the surgery b/c at her age making such a big decision like that is extremely difficult. However, I also am always tired and am in an ungodly amount of pain. I am ready to gain back control of my life and start living again.

Something else that kicked my gear into overdrive for the surgery is the fact that b/c of the high doses of Prednisone and Remicade treatments my immune system is severely compromised. I've had a few very painful abscesses, which required removals and open wound care, and then I had a MRSA staph infection that was difficult to get rid of. I currently have around 10 skin cysts under my left armpit that are each the size of lima bean and they will all be removed on Friday as well.

I am so sorry you and your daughter are going through this. Surgery really is such a scary option...but for me I have no choice...I need to be better. I wish there were more options for your daughter too, but it sounds as though she doesn't have much of a life right now outside of the bathroom and bed...which is where I have been.

I wish you the best, and do post a threat on the Ostomies forum, as I know everyone there would be more than happy to help you. : )
: )  Robin
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
"Your mind is like a parachute, it only works when it is open."
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!

Forum Moderator

Date Joined Feb 2006
Total Posts : 5698
   Posted 2/3/2009 8:04 AM (GMT -6)   
I had jpouch surgery 7 years ago; best health decision I ever made. I had UC for 12 years but the last 2 years were in a constant flare. I became steroid dependent. I recommend that you and your daughter go to You can meet people on that site who have the jpouch, kpouch, and permanent ostomies. It's best to get educated about the options before a consultation. She can also meet others in her age group on that site.

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Regular Member

Date Joined Oct 2005
Total Posts : 99
   Posted 2/3/2009 8:44 AM (GMT -6)   

I'll ditto Suebear's remarks. J-pouch surgery has an excellent potential to give your daughter her life back.

I wish I had done it years sooner. Dysplasia took the decision from my hands.

New Member

Date Joined Feb 2009
Total Posts : 9
   Posted 2/3/2009 11:27 AM (GMT -6)   
My daughter just had her first surgery December 08. She was diagnosed with Severe UC in August 07. She is also 18 and a freshman in college. She became sick again in October 08, she was in remission for a short time. She stopped responding to treatments. Hospitalized in November 08 and wasn't responding to IV steroids or cyclesporin (sp?). When she started getting sick again in October we talked about the surgery. My daughter wanted it. She was tired of being sick, missing out on sooo much. The doctors were hoping that she would go into the surgery healthy and tried the cyclesporin to bring her into remission. Cyclesporin made her really sick and didn't work. They said she couldn't wait. As the surgery was very scary for my husband and I we're now thankful she had it. She does have the temporary ileostomy. But it is nice to see her enjoying life again. She is actually wanting to start playing softball and go snowboarding again. She is getting use to the ileostomy (it took her a few weeks). But is okay with it now. So far (knock on wood) she hasn't had any problems. I have read a lot of stories about blockages etc. We only had skin irritation.

Regular Member

Date Joined Oct 2005
Total Posts : 99
   Posted 2/4/2009 8:56 PM (GMT -6)   
Megan will have the rest of her life back soon. I'm sure of it. She's a very brave young lady.
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