My Doc recommends surgery

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pupluv
Regular Member


Date Joined May 2007
Total Posts : 256
   Posted 6/29/2007 7:57 PM (GMT -7)   
Hi, I'm very new to the UC site(not new to the disease) and didn't think I would be here for quite some time. So, needless to say, this is my first time postin here. I had a colonoscopy last week and was informed I have low grade dysplasia. I was wondering if anyone here had surgery due to low grade dysplasia.
I was also wondering if a pull through or J pouch would even be an option with dysplasia. I am pretty scared right now and any comments would be greatly appreciated.
Thank you
Donna
Donna
Diagnosed with indeterminate colitis in 1992
current meds
4 asacol 3x's a day
Azathioprine
Rowasa enemas as needed
VSL3
Bunches of vitamins


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/29/2007 8:14 PM (GMT -7)   
I don't know much about dysplasia, I think it means precancerous, but I am not even sure about that, lol. Anyway, I think pretty much everyone here will tell you that life is so much better after surgery!
Whether you have a j-pouch or a perm ileostomy is a very personal decision. I can tell you why I chose what I chose though.
I had UC for 8 years and got tired of being sick so Iwent and I said, take it out! My GI tried to talk me into a J-pouch but after doing alot of research on it, and talking to my surgeon I decided on the perm ileostomy. My surgeon said that was what he reccomended so that was one reason. A few of the other reasons I chose that were that the jpouch requires two surgeries, and some people, after the take down have to go to the bathroom like 30 timesa day at first! And it can sometimes take a year to get full control over your bowes and even then you can still expect to go 4-7 times a day, with some urgerncy, well that was part of what I was trying to get away from! Also, the jpocuh can develop pouchitis which is apparetnly icky. THere is something called a koch pouch, which I thought about doing, it is where they make a pouch out of your intestines in you stomach and you stick a catheter and drain it a few times a day. I thought that sounded like a good idea, however up research I found out only 500 people in the US had had that surgery done, and I didn't want to do something that was so new. Also, there are only a few places in the country that do it.
Having a bag isn't the funnest thing in the world, and it has drawbacks too, it's kind of a pain to have to fiddle with it, and take your stuff everywhere you go. If you have a leak, it's rather gross, but it's better than being sick all the time, and I haven't had much trouble with leaks, at first I had some user error problems, lol. And i won't lie, the surgery part is really not fun. But I am two months out and I am feeling so much better, most of the time I forget the ostomy is even there. I am still a little paranoid and change it more often than I need to.
Anyway, everyone here is very helpful and is great about ansewereing questions.
Good luck!

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 6/29/2007 9:30 PM (GMT -7)   
Hey Donna, I had my ileo surgery when I was 10 years old due to dysplasia that was found during my last colonoscopy. It was the best decision my parents ever made for me. I have never regretted a single day with my ileo (mine was due to UC too).

31 years later and I'm able to do what I want, when I want, without any pain, meds or special diets.

A j pouch is most definitely a viable option for you. J pouches were very new when I had my surgery but unfortunately, a year after my ileo surgery, my rectum and anus had to be removed as well so the j pouch surgery isn't for me. However, I live a full life with my ileostomy and wouldn't have it any other way.
 
The pull-through operation seems to work better in kids than adults. For some reason, the majority of adults seem unable to maintain continence with this op although the younger you are, the better the bowel seems to adapt in this situation.

Good luck in your decision.


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!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/30/2007 6:53 AM (GMT -7)   

Yes a jpouch would be a viable choice for you.  You can meet other folks with jpouches (after being diagnosed with dysplasia) at the discussion boards of www.j-pouch.org

 

Sue


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
 


pupluv
Regular Member


Date Joined May 2007
Total Posts : 256
   Posted 6/30/2007 7:29 AM (GMT -7)   
Thank you so much for your reply's. I have been starting to research. I do hope a j pouch may be an option for me, but my rectum is affected now and then from the UC so that may just knock that surgery out. I hope not though. This is all very overwhelming and I appreciate your advice.

Donna
Diagnosed with indeterminate colitis in 1992
current meds
4 asacol 3x's a day
Azathioprine
Rowasa enemas as needed
VSL3
Bunches of vitamins


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/30/2007 3:29 PM (GMT -7)   

No matter which surgery you choose you will lose your rectum, so don't worry about that.  My UC was pretty well confined to my rectum and I have a very successful j-pouch.

Sue


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
 


pupluv
Regular Member


Date Joined May 2007
Total Posts : 256
   Posted 6/30/2007 10:34 PM (GMT -7)   

Thank you Sue, that makes me feel better. I'm wondering.....if anyone here had there ostomy due to low grade dysplasia. I'm trying to make the decision to monitor this for a while or start making plans for the surgery.

Thanks guys

 


Donna
Diagnosed with indeterminate colitis in 1992
current meds
4 asacol 3x's a day
Azathioprine
Rowasa enemas as needed
VSL3
Bunches of vitamins


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/1/2007 6:13 AM (GMT -7)   

Yes, there are several people at www.j-pouch.org who had a temp ileostomy due to dysplasia.  Most of them had the reversal surgery to a j-pouch and are now doing fine.

Sue


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
 

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