No j-pouch for me

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Regular Member

Date Joined Apr 2008
Total Posts : 99
   Posted 7/11/2008 1:10 PM (GMT -6)   
Those of you that know my situation know that I had a total colectomy in May for my UC but the surgeon left the rectal stump with just a small amount of my colon so if I wanted to have the j-pouch done she would do it in a 3 step procedure.  The reason that it was done this way was because of all the problems I had they wanted to get the colon out quickly before it caused anymore "bad" situations for me but still allow time to make the decision of j-pouch or permanent ileostomy.
Before anyone thinks that I fell victim to the stories about the very small percentage that get reversed because of complications let me say that was not a factor.  I viewed both possible paths as if they are to be successes.  I have to because my surgeon is the most awesome surgeon I have ever met so either way I would be guaranteed success.  The main reason I am not choosing the j-pouch is because I feel the ostomy best suits what will most benefit me.  There are only a few physical activities that I can think a bag would hinder and at my age those are things I will not or can not do, LOL.  With the bag I will have a "mechanical" control that I feel will be more convenient than going back to "physical" control.
The psychological aspect is one area I had to give substantial consideration to also.  I have adapted quite well to having the bag but it is a big hurdle that will take more time to clear.  The first day after surgery I identified myself solely by the bag and as time has gone on each day I slowly add back in all the other things that I identified myself with prior, minus the UC.  With that I am confident that in time I will be back to my old self, mentally and physically.  I have the luxury of being married to a great woman who has seen me through all of the rough stuff so she has had no reservations about making it permanent.
Another area that helped with my decision was complications with each.  It seems that if I were to have any problems with the j-pouch (pouchitis or cuffitis) I would need to seek medical attention and it might take a week or so to get everything back on track.  With the bag most of the complications I would be able to rectify myself (leaks, skin issues and such) and without having any long lasting physical aspects that could cause problems with me working.
The last area was in research that I did with the longevity of both.  Very few deterioration issues are documented with either but statistically through the Mayo clinic website the chances if contracting pouchitis and cuffitis increase with the years you have the j-pouch.  Knowing how impatient I can be I see that it wouldn't take too much for me to get discouraged with it and dream of the good old days with "Leo".
So my decision is one to give "Leo" a stay of execution and start reclaiming my life.  I don't want anyone to think that I am trying to discourage away from j-pouch surgery, this decisions was made based on my particular needs and considerations.  Either direction would be a million times better then dealing with this DD for another day.  So we are looking at the final surgery around the end of August which is just one more step on my way back to being me.  I hope everyone on here is doing great and learning to re-enjoy life like I am.  Take care and God Bless.

Total Colectomy with End Ileostomy May 27th, 2008

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 7/11/2008 1:50 PM (GMT -6)   

You have so eloquently put into words your decision making process! I have long said that there is no perfect solution for those faced with making the decision to have surgery. Each surgical choice (k-pouch, j-pouch, BCIR, and permanent ostomy) come with their pros and cons, their advantages and disadvantages. We all have to weigh our lifestyle against those pros and cons in order to decide what is best for us and what we each will to compromise on. Congratulations for going through the process and determing what's best for you.

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

Veteran Member

Date Joined Dec 2007
Total Posts : 739
   Posted 7/11/2008 8:44 PM (GMT -6)   
congratulations on ur decision, u did word it very well (as sue stated) i know exactly what u mean about defining ur self by the bag and then slowly everything in ur life coming back together
slowly and the aspect of the bag shrinking as the other things added into ur life...
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting has been my Godsend...Thank you

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 7/12/2008 11:34 PM (GMT -6)   
i am glad you have made your decision and seem happy with it, that is what is most important that we are happy with ourselves!

vette guy
Veteran Member

Date Joined Nov 2006
Total Posts : 650
   Posted 7/12/2008 11:51 PM (GMT -6)   
I guess the old saying " the devil you know versus the devil you don't" applies perfectly to your thread. I've had my ostomy now for 19 years, and I could say with complete honesty I would be reluctant to be "hooked back up" if future medical advances made it possible. I've just gotten so used to it. And, other than sleeping on my stomach, there's nothing I don't now that I was able to do when I was a pre-Crohn's teenager.
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