living with a jpouch

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daylight
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 2/20/2009 10:02 AM (GMT -6)   
I have had a jpouch for 3 weeks now. I am hoping to hear from others who are living with it and maybe learn some things that might help me to adjust. It has been rough.
balloon

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/20/2009 10:15 AM (GMT -6)   
I have had my jpouch for about 8 years now. It's been great. The first year is a period of adaptation; it will take time but you should see improvements in 6 week increments. Don't look for improvements in terms of days, it takes a while for the jpouch to learn how to behave like a colon. There are things you can do to make your adjustment easier but since I don't know what seems to be your biggest complaint I can't comment. I suggest you visit www.j-pouch.org That site has over 6000 jpouch members and quite a few who are early in recovery.

I have a very full and active life and participate in 100-200 mile international hikes. My jpouch has not stopped me from doing anything. I eat anything I want, travel when I want, and take no medication. It doesn't get much better than this.

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


daylight
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 2/20/2009 12:03 PM (GMT -6)   
Your experience is very encouraging. I guess I basically have to hang in there.
The hard thing right now is the frequency of the bathroom visits and the butt burn. ( I have some cream that helps some.)
It will be better once things slow down. I am not eating after supper, hoping this will slow down nighttime trips. nights .
I am not having a problem with leaking.
I read that Metimucel might help to thicken up the stool. I am wondering if you just follow the instructions on the bottle for ordinary use.
I'll check out the jpouch.org site as well.
My doctor told me that I am the first of her patients to have the jpouch, so it is kind of like the blind leading the blind in this instance.
Thanks for your reply.
starlight

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/20/2009 1:52 PM (GMT -6)   
You can reduce frequency by taking imodium after each meal. You can safely take up to 8 per day but will need to experiment with dosages since everyone is different. Metamucil wafers are preferred over the powder. Eat them before a meal. If you choose the powder make according to the package directions but only mix with half the water recommended on the container. Keep a food diary and see what foods are "thickening" for you. It will all change over time but will be gradual.

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


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 2/21/2009 6:32 PM (GMT -6)   
I had my final Jpouch surgery one month ago and I have similar problems. I currently have 8 to 10 BMs per day. I was waking up 4 or 5 times each night so I stopped eating after lunch or about 2:00 pm. I still have plenty of fluids after lunch. I now only get up once or not at all. My butt burn is very bad and the cream I use doesn’t help much. I also spray my bum with water after every BM. My surgeon told me not to use Imodium right now. She said we will discuss it at our next appointment. I found that any foods with tomato sauce aggravate my butt burn.
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


malachy72
Regular Member


Date Joined Oct 2005
Total Posts : 99
   Posted 2/21/2009 6:56 PM (GMT -6)   
I take immodium whenever I can remember. Potatoes seem to be an excellent food for forming stools in the pouch.

daylight
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 2/21/2009 8:23 PM (GMT -6)   
I got some Metamucil wafers to try and I think they are going to help. Today, instead of just liquid coming out, there were a lot of small pieces and it wasn't burning so bad. I'll continue with it and see how it goes. I have also found that oatmeal and bananas seem to help thicken.

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/22/2009 9:01 AM (GMT -6)   

Yes, oatmeal and bananas and rice will help too.  The metamucil wafers will help absorb those enzymes that cause the burn. 

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


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 2/22/2009 5:48 PM (GMT -6)   
The first couple of months is really about adjusting to your new plumbing. Hot baths were the only thing that seemed to help me with the butt burn. And I would sit in one for hours and just cry because it hurt so bad! Slowly add foods and you can pinpoint which foods are trouble, over time you can re-introduce the same foods and won't have any issues with them. The only things that really bother me now are raw fruits/veggies, but I know that Sue's diet is mostly these things. I added sugar to tomatoe sauces and for some reason, didn't have any problems with it after that, I don't know if it reduced the acidity or what, but I love spaghetti! Calmoseptine & Nupercainal are creams that I used, the Calmo has menthol and kind of heats up first and is a great barrier cream and Nupercainal is a great numbing cream!

It's completely normal what you are experiencing, I don't understand why doctors don't tell you what to expect, but in your case, they probably didn't know. I can't imagine how scary that is! shocked


I hope you find relief soon!
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08


daylight
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 2/24/2009 10:44 AM (GMT -6)   
Thank you everyone for your input, it was helpful.
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