after surgery condition

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passgas
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted Yesterday 2:49 PM (GMT -6)   
Hi, Im new to this site so Im not sure if this is how it works.
Anyway, I was wondering if anyone has had surgery for UC already.  I have and would like to pick your brain and maybe I can help too.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted Today 6:57 AM (GMT -6)   

Yes, I have had surgery.

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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted Today 9:32 AM (GMT -6)   
i have too, so ask away

passgas
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted Today 8:14 PM (GMT -6)   
Sue,
Not sure if this is the way to reply to you.  Let me know if you get this before I continue.  Thanx Passgas

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted Today 9:03 PM (GMT -6)   

You can reply this way or you can find my email on my profile and email me.  Either way is fine with me.

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


passgas
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/22/2009 4:16 AM (GMT -6)   
Hi Sue,
My name is Cheryl. I had the surgery in 1995 and life was great after getting reversed.  Basically normal.  I never suffered before like most people, my colitis was quick, short lived and I wound up having emergency surgery in NYC, not even knowing what was going on. I woke up one day with an ileostomy bag, 6 mos. later got reversed.
 
Anyway, long story short, since then I have been able to do everything, eat anything and you wouldn't have ever known I went thru all that.  As of late though, the past 2 years things have changed.  My stool became more liquid, the best it ever got was tooth paste like but my huge problem today is passing the air.  Throughout the years I would have to lay on my stomach, roll around on my bed.  It wasn't often and was fine.  As of late though, I find that I am unable to pass that air (gas) and since my stool isn't as solid, I have to lay down on my stomach, basically roll around and use a wodd of paper towels because Im unsure of what is going to come out.  Its turning into a major ordeal and getting very uncomfortable.  I was considering getting reversed again and remaining that way since my quality of life is effected greatly.  It almost feels like I have UC again.  The whole bathroom deal, uncomfortable, noises in my stomach of liquids going thru my intestines. 
 
So I guess my question to you is, is everything OK, any changes?  I know nobody else can make this decision for me and its a major one.  One for the rest of my life. I just had surgery last August 08.  Small bowel resection because there was a narrowing where I was re connected.  Once opened, there was 5 hours of scar tissue work along with rerouting instead of removal.  After seeing my surgeon, that didn't work and I have exhausted all my surgical options.  It's either live with it or get reversed.  The last thing I am doing this week is trying dilation.  In addition to widening the narrowed area (which isn't really the problem) they also empty my j pouch.  Bottom line, the j pouch isn't doing working properly anymore and isn't emptying everything.  So I will see how this goes and hopefully feel 100% if I have to make the decision for the reversal. It's about my quality of life. I'm 52 and struggling today.  It gets exhausting, draining and depressing. 
 
I was wondering if you had any thoughts on this or if you could tell me how you have been since your surgery.  I was never on any long term meds since UC was so short lived.
 
Hope you are feeling well.
Looking forward to hearing from you
Cheryl (passgas)

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/22/2009 2:06 PM (GMT -6)   

I am 8 years uot of surgery and have not experienced anything like you describe.  However, I think you can find support and advice at www.j-pouch.org.  There are over 6000 members on that site.  Post a note in the general discussion thread mentioning problems 15 years out and I am sure many of the long time pouchers will come to you aide.

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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