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benjwl123
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 4/15/2009 8:06 PM (GMT -6)   

So, I just had phase II of J pouch Surgery and less than 2 weeks out I went to my doctor to drain a liter fluid filled abscess from my rectum that apparently caused the pouch to separate from the anus. 

 

I found out today that this is something known as pouch sepsis and only 5-10% of patients get this (lucky me).  This means that the J pouch function is highly compromised and may never work unless a new one is recreated.  Though the doctor said that there is a 70% chance if you go to the right center that this could end up to be just a set back. He recommended the Cleveland Clinic which I know is an excellent place.  It adds a whole new dimension to this process since we live pretty far away from Cleveland and will incur many more expenses from travel and hotel stays.  This is getting so complicated and frustrating.

 

I really had a grueling recovery with pain post surgery as well as having an emergency response code being called because of a bizarre unexplainable vital readings that landed me in ICU.  I read all these complications that occur, like blockages, butt burn and other nightmare symptoms.  I just don't know if this is a sign that I should live with the illeostomy or give this another shot.  Is the pouch worth all this investment?  Just looking to vent and get some inspiration from people who have experienced this or have continued with the Pouch despite this major complication.  Thanks for reading!!!


Diagnosed with UC since 1999
Current Meds:
 
Sulfasalizine 500 mg tabs 2x's daily
Rowasa enema 2x's daily
Colocort Enema 1x daily
Prednisone during active flares
Imuran 6 months in 2006 (Joint Pain) Stopped
Florastor Probiotoic
Bentyl for cramping
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16712
   Posted 4/15/2009 8:52 PM (GMT -6)   
I know if it were me I would go for the second attempt at the jpouch but I know plenty of people who opt for the perm illeo and end up extremely comfortable and pleased with their decision. I don't know too much about surgery, I am just at the start of my UC journey... I don't know if this is the best board to ask this question, most of the people here are still are on meds and don't have too much experience with surgery. Hopefully you can get some responses that help bring you closer to figuring out what you want. Go with your heart. Whatever you choose, happiness will be around the corner.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/15/2009 9:03 PM (GMT -6)   

If it were me I would go to the CC for a revision.  But I say that because a permanent ileo was never an option for me.  Due to backpacking and long distance hiking I knew I would have to give up what I love most if I didn't try a jpouch.  Since this is your decision you should make a list of pros and cons and try to choose the best solution for you.  I will say that the CC is reknown for CR surgery and would expect you to sail through a redo if chosen.  What part of the country do you live?  There might be resources closer to your home.

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


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 4/16/2009 2:36 AM (GMT -6)   
Hi
Don't worry I am lucky too. I had abscesses all around anus and drained out from time to time. One of them has developed into a horse shoe fistula and is always abscessing. I am in unbearable pain. Some doctors suggested that I may have to do away with the J pouch, as the fistula is communicating with the J pouch (cutting/piercing the pouch). In any case, if given the option I would definitely try another J pouch instead of going through the permanent ileostomy.

Give it a thought. Lots of people have had repeated pouches and are doing fine. Why not give it a try.
45 years Male Attorney
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
"Faith is the bird that sings when the dawn is still dark."
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracl: Albert Einstein
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 4/16/2009 2:37 AM (GMT -6)   
For your information, I am not going for repeat J pouch in view of my incisional hernia (which is as big as a tummy of 6 months carrying lady). No doctor wants to play with my abdomen in view of the complications involved because of too many adhesions and earlier burst outs.


45 years Male Attorney
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
"Faith is the bird that sings when the dawn is still dark."
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracl: Albert Einstein
"What you are aware of you are in control of; what you are not aware of is in control of you."
 

Post Edited (PSA.Delhi) : 4/16/2009 9:24:52 AM (GMT-6)


benjwl123
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 4/21/2009 7:35 PM (GMT -6)   
Thank-you to all who have read and responded to my post.  I have a lifetime to decide where to go from here.  It is hard to say what the best option is at this point.  I feel like I am a high surgical risk due to the complications.  Every surgery leads to potential complications and more surgeries.  I just don't know if these signs are telling me that the pouch was never meant to be.  Having 2 young children I feel that I would almost be selfish to elect to go back into the Operating Room for a re-do.  The thought of a permanent illeostomy is not appealing but I came close to feeling that the end of my life was hanging in front of me and I never want to feel that again.   I want to get my health and life back and live the most normal life possible.   That is all people with this disease wish for and deserve.
Diagnosed with UC since 1999
Current Meds:
 
Sulfasalizine 500 mg tabs 2x's daily
Rowasa enema 2x's daily
Colocort Enema 1x daily
Prednisone during active flares
Imuran 6 months in 2006 (Joint Pain) Stopped
Florastor Probiotoic
Bentyl for cramping
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/21/2009 8:27 PM (GMT -6)   

I don't believe that your surgery complication is a "sign" of further complications or that if you risk another surgery that you are just opening the door for more and more surgeries.  There are lots of people who have had severe complications following jpouch surgery and have gone on to have successful outcomes with additional surgery.  With that though you shouldn't have any surgery if you're not 100% percent behind it.  Fortunately you don't need to make a decision today and can take the time to review the many options you have. 

 

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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