Looking for advice...

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BMTB
Regular Member


Date Joined Aug 2005
Total Posts : 422
   Posted 1/15/2006 12:15 PM (GMT -7)   
I've had UC for 15 yrs and post frequently on the UC board.  I am beginning to research surgery options, as I am tired of spending 1/2 my days in the bathroom and my UC has been getting chronicly worse. 

I have so far done some research on J-Pouches and BCIR.  What is everyone's opinions on those?  Would you prefer one over the other?  Why?  What are some complications you've had? Has anyone had step 1 of the J-Pouch proceedure and then found out they were not able to have the take down?

I've been reading a lot on the Total Colectomies topics but am going to go back in time and read some of the older posts.  Any advice and opinions you can give me is greatly appreciated.
Brenda
'diagnosed' UC in 1989
Currently on 9 Colazal per day
Lexapro 10 mg
Next Remicade ???
Currently in a Flare since the end of November.
Starting to research the possibility of surgery to "CURE" my UC for good.


Suzy2
Regular Member


Date Joined Aug 2003
Total Posts : 335
   Posted 1/22/2006 8:05 AM (GMT -7)   
Hi Brenda.
 
I know how you feel,I spent the best part of 25 years in the bathroom. In the end,I got worse and no medication did anything for me anymore.
 
I saw your post a few days ago,and I was hoping that someone that has actuely had a J-pouch would answer you. I decided in the end to go for a permenent Ileostomy. I couldnt face the thought of pouchitis and butt burn etc and then maybe it not working out after all and I might have ended up with the permenant Ileo anyway.If I understand it correctly,they have to leave a very small amount of rectum(rectal cuff I think they call it) to be able to fix you up with a J-pouch. I had Colitis in that too so I felt it best to get rid of it all. That is just how I felt about it all of course and thats why you need to here from someone that has had a J-pouch and is happy with it.
 
Come on J-pouchers,you must be out there somewhere.
 
Sue


BMTB
Regular Member


Date Joined Aug 2005
Total Posts : 422
   Posted 1/23/2006 10:41 AM (GMT -7)   
Sue,

Thanks for finally replying! I was surprised not to hear from anyone for so long.

I just had an appt w/ my GI today and we discussed J-Pouch vs BCIR. I am with you - I don't want to worry about accidents or wearing Depends or having additional flares. She actaully mentioned something to me that I'd never heard before - "Dysfunctional Rectum". I think I am going to try for the BCIR. She recommended I have a permanent ostomy, but I am 34 and do not really want a bag...yet. So, if the BCIR works for a few years, I'd be happy w/ that and when I get older if I need a bag, then so be it.
Brenda
'diagnosed' UC in 1989
Currently on 9 Colazal per day
Lexapro 10 mg
Next Remicade ???
Currently in a Flare since the end of November.
Starting to research the possibility of surgery to "CURE" my UC for good.


dot#2
New Member


Date Joined Jan 2006
Total Posts : 2
   Posted 1/23/2006 10:54 PM (GMT -7)   
Hi Brenda,

My name is dotty. I had a total colectomy (which was my initial surgery) approximately 10 plus years ago. I also was in the bathroom so much prior to my surgery that I think I know where every bathroom is around town. I was so sick with my UC that I ended up in the hospital and 3 weeks later I came out with an ileostomy. I felt great after I had the surgery done that i didn't want to have the rest of my surgery completed. my surgeon needed to complete making my j pouch. Well anyway I went through with the surgery to complete the J pouch and ended up developing scar tissue, which they called an anastomatic stricture. I had to have the scar tissue dialated quite a bit until 2003 when I opted to have some of the scar tissue removed. I ended up developing a fistula from my surgery and in October of this year I had my ileostomy put back up. I think I will keep it for a while because I am sick of being sick, and it's not that bad having and ileostomy. I can try later if I want to have it reversed (hopefully I won't develop another fistula).

I'm not sure what BCIR is but all I know is that I felt so much better after my initial surgery that i did not care that I had an ileostomy. I hope the best for you. Rembember your not alone. Oh by the way I am 40 yrs old now. so i think my first surgery was before i turned 30. and i was sick with UC four to five years prior to my surgery. Remember you have people who are rooting for you whatever decision you make. Take care!!

dotty

Bradums
New Member


Date Joined Jan 2006
Total Posts : 4
   Posted 1/31/2006 4:23 PM (GMT -7)   

Sue, Brenda, here I am, a j-poucher...but for how long? I am not doing well, and many people I know and have met are in the same boat. A childhood friend of mine has a j-pouch, but only 4 months, I have had mine for 2 years, I am exploring the BRIC or a permanent ostomy. Colitis is awful I suffered for 6 years, but one day of a flare is like everyday with a j-pouch. I had success with a book called the Maker's Diet by Jordan Rubin, if you want I will send it to you, incredible. So you ask, well why did you have the surgery... I ask myself the same question daily!!! Read the book before you do anything!!!! Let me know how you are, both of you!

Many blessings,

Brad- Nashville, TN


Lesrich
New Member


Date Joined Apr 2004
Total Posts : 9
   Posted 2/24/2006 12:40 PM (GMT -7)   
Brenda
Has your doctor mentined the Kock pouch? There are more surgeons in the US who do the Kocks than the BCIR. They are quite similar in that they both have internal pouches, flush stomas, and are emptied with a catheter. I had one for 24 years and now have another.
I am reallly happy with the Kock and there are many others as well.

Suzy2
Regular Member


Date Joined Aug 2003
Total Posts : 335
   Posted 2/25/2006 5:20 PM (GMT -7)   
Bradums said...

Sue, Brenda, here I am, a j-poucher...but for how long? I am not doing well, and many people I know and have met are in the same boat. A childhood friend of mine has a j-pouch, but only 4 months, I have had mine for 2 years, I am exploring the BRIC or a permanent ostomy. Colitis is awful I suffered for 6 years, but one day of a flare is like everyday with a j-pouch. I had success with a book called the Maker's Diet by Jordan Rubin, if you want I will send it to you, incredible. So you ask, well why did you have the surgery... I ask myself the same question daily!!! Read the book before you do anything!!!! Let me know how you are, both of you!

Many blessings,

Brad- Nashville, TN

Hello Brad.
You have got me a little confused. If you have had such success with the Makers Diet how come that you are still having problems? Or do you mean that the Makers Diet had started to help you before any surgery,but you had the surgery anyway? When you say that you are not doing well with the J-pouch,do you mean that you are getting pouchitis or butt burn or somthing? Sorry about all the questions but I just didnt quite understand what you meant.
Its to late for me to "do anything now" as I have a permanent Ileo and back passage all sewn up,thankfully I am doing very well :-)
Sue


Westcoast Joe
Regular Member


Date Joined Apr 2005
Total Posts : 130
   Posted 2/28/2006 12:53 PM (GMT -7)   
Check out Shaz ostomy page. you will have to Google it. They have many experienced people on that site. I tried the Makers Diet and had no luck. I have heard of people eating only chicken and have great results. My opinion is when it wants to get you , it gets you. My experience has been that people read a book and wam-o they go into remission and believe they caused it by following the book. I think they were already headed into remission. Check out Shaz it will be good for you. WESTY
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