Do we ever lose the diapers?
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Yes - 0.0%
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No - 0.0%
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Eventually - 0.0%
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after 3 months - 0.0%
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after 6 months - 50.0%
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after 1 year - 50.0%

 
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Shiraz1
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/29/2009 8:42 PM (GMT -7)   
I had 100% of my colon and rectum removed on Nov.11,2008, I had my reversal on Feb 10, 2009.  I've read everyone stating Imodium for binding...my Dr hasn't mentioned that I take Lomotil and Metamucil but can't seem to gain control.  I'm afraid to eat because it comes out so fast.  I keep trying to keep track of everything I eat and their effects.  I'm tired of the broken glass in my *** feeling.  I switch around ointments between A&D, Nupercainal, Tucks, Lidocaine along with baby wipes and tucks pads...topped off with a diaper.  Is everyone stuck in diapers or just me?  Will the diapers ever go away.  I'm have only me to depend on finacially and can't afford to be down this long.  I seen peep asking about the distended stomach, I also had one which has recently been going away.  I get strange pains in my butt cheeks during a BM and certain foods cramp my stomach so bad...or eating too much really hurts.  I can't gain weight I started my ordeal last year at 117 lbs. after first surgery went down to 96 lbs...i'm now only at 105 and maintaining.  I need to get rid of these diapers and stop this water leakage problem.  Any suggestions...or answers to the diaper deal.  Thank you.
 
My heart is extended to those who totally understand this horrific ordeal we now have to live with.

dilatante
Regular Member


Date Joined Jan 2009
Total Posts : 125
   Posted 3/29/2009 8:58 PM (GMT -7)   
good luck! I don't have any answers for you, other than you have my sympathy!!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/30/2009 5:27 AM (GMT -7)   
I would start with what you are eating...mashed potatoes, rice, bananas are all a good start. They generally bulk up your stool. My doc wanted me taking Metamucil daily and Imodium when necessary...you may want to call their office and check what they prefer.

External applications will help, but you need to stop/reduce the liquid stool in order to get true relief. Have you tried a Sitz Bath after you go?

Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted 3/30/2009 3:55 PM (GMT -7)   
I'm sorry to hear of your distress. I remember well 2007 when I spent almost the entire year battling UC and not having any control over my bowels. It was a year of hell...

I had the surgery in October 2007 and I've been wearing the ostemy bag now for about a year and a half. I was told I could have the reversal surgey and use the J-pouch that was made inside me after three months. After being in the hospital 4 times in 2007, I just wasn't mentally ready to go back in for the surgery, and I asked my surgeon if I could put it off. He said yes and I'm still not ready yet to go back in and have to deal with the issues involving "getting used" to the J-Pouch...

At least with the bag i have SOME control over things, and I can have a day-to-day life.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/30/2009 6:01 PM (GMT -7)   

If you have a jpouch then expect to see improvement in 6 week increments.  It's a long slow recovery but you should get better over a period of time.  Definitely start taking metamucil to bulk things up.  Many say that the wafers work better than the powder.  You will need to experiment with how often you eat them and how to balance things with lomotil.  Lomotil's purpose is to slow your transit time down; metamucil will bulk things up. 

I never had to wear diapers.  If you have significant leakage then you should start doing kegels to strengthen your sphincter.  The muscle can be traumatized during surgery and needs exercise to tone and strengthen it.  I also recommend you visit www.j-pouch.org for more tips.  There are over 6000 pouchers on that site that can be of assistance.

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


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 4/4/2009 8:53 PM (GMT -7)   
It will get better with time. It took 3 to 4 months before things began to slow down for me. I didn't take anything like metamucil or imodium. I guess it may have helped me. Anything I ate passed right through me within 5 to 6 hours no matter what it was. I took several hot baths during the day and night to help with the volcano butt burn and used calmoseptine to soothe the burning. These seemed to do the trick for me. Eventually, things will bulk up, slow down, you'll sleep better, and you'll feel a lot better. It just seems like it takes forever as your going through the experience. Don't worry, it will get better. I leak a little at night, so I do wear a light pad. I too hope that too will go away with time, maybe I'm just too relaxed at night when I'm asleep.

UPDATE...the night time leaking stopped 2 years after the jpouch surgery on its own. I also discovered I had chronic pouchitis after my jpouch surgery without realizing it. I began taking Tinidazole (antibiotic) 1 or 2 pills and it lasts 6 weeks for me, then I need to take another 1 or 2 pills to get another 6 weeks of remission. I've been doing this religiously for 4 years. So far so good. 5 BM a day and one at night. I've have the j-pouch 6 years now and I consider myself cured of UC and life is about 95% normal before UC. I don't even think of UC or bathrooms anymore. Good luck.

Post Edited (GISGuy31) : 11/10/2014 1:19:13 AM (GMT-7)

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