35 years for me

Wow.  That's a long time. 

I never even knew that the procedure existed until about 6 years ago.  I didn't know alot.  Except I had UC.  I knew that. 

Congratulations! 

Richard. 

Wow congrats! That's a long time. Mine is still a child at 6 yrs old. My sister has a j pouch as well and hers is going on 26 yrs. No issues. 

Hi MGMT10!  I'm wondering if you and your sister both had UC? Mine was done after 3 horrific years of UC... Steroids, multiple hospitalizations,etc.  I thankfully went to Lahey for help as the docs in RI were in my opinion, incapable of treating UC.....

My hubby is going on 22 years.

I love that quote, Lablover! Now if I could live it.... ! So happy your hubby is doing so well at 22 years!

janice pollard posted:

Hi MGMT10!  I'm wondering if you and your sister both had UC? Mine was done after 3 horrific years of UC... Steroids, multiple hospitalizations,etc.  I thankfully went to Lahey for help as the docs in RI were in my opinion, incapable of treating UC.....

Yes, we both had UC. My sister is 11 yrs. older than me. She was dx'ed when she was 25.  It hit me later....I was dx'ed at 35. I also have an uncle with a j pouch too due to UC.  Runs in the family! 

I've had my pouch for 3 years. It has NOT been smooth sailing. I'm curious, what does a successful, long-term pouch feel like? How many times do you go each day? If you do have problems, what are they? I guess I am asking, what is it like to have a successful J-Pouch?  

Thank you, 

3 years for me and very happy.

Going on 9 yrs and very lucky to have this option.

I have a k pouch that just celebrated 37 years....Happy birthday george, it has been a long run....

17 years, for me, quite a ride!

30 years, no issues! 

Janice, that's amazing. I always get a bit worried when I see the number of posts here about people who have had to revert to stomas or switch to a K-pouch. Not that there's anything bad about those, but I'm so happy with my J-pouch I'd hate to think it won't last. Have you had any trouble over the years?

17 years for me and still going with the j-pouch.  Only other surgery was laproscopic(spelling?) surgery to remove adhesions that were causing obstructions 1.5 years ago.

It's great to know that people have successfully lived with a j-pouch for many more years.  I hope I can remain healthy the rest of my years with a j-pouch!

What is the oldest person anyone here has heard of living with a j-pouch?

Anyone in their 70's or 80's with a j-pouch?

That's awesome! What tips do you have for a successful pouch?? 

I rest when my body tells to. I have learned to listen to my body and not push every minute ,everyday.

I drink a lot of G2 and a lot of water.

Eat smaller meals till your pouch expands, and live life to the fullest everyday.

debbieod posted:

I rest when my body tells to. I have learned to listen to my body and not push every minute ,everyday.

I drink a lot of G2 and a lot of water.

Eat smaller meals till your pouch expands, and live life to the fullest everyday.

G2?  Gatorade?

I hate G2 and Gatorade! Maybe that's why I have so many issues, lol! Glad you have such a great pouch!

Cdub posted:

Janice, that's amazing. I always get a bit worried when I see the number of posts here about people who have had to revert to stomas or switch to a K-pouch. Not that there's anything bad about those, but I'm so happy with my J-pouch I'd hate to think it won't last. Have you had any trouble over the years?

Hi Cdub! I've had a few bumps in the road.... BUT, they did not require surgery. The most serious was a small bowel obstruction in 2010. I am thankful every single day. Stay positive in all that you do and think.  I fell that helps a lot!

AllyKat posted:

I hate G2 and Gatorade! Maybe that's why I have so many issues, lol! Glad you have such a great pouch!

I drink a lot of G2!!  How about iced tea? I used to drink that early on....  I wish you good luck going forward.

debbieod posted:

I rest when my body tells to. I have learned to listen to my body and not push every minute ,everyday.

I drink a lot of G2 and a lot of water.

Eat smaller meals till your pouch expands, and live life to the fullest everyday.

I strongly agree with living life to the fullest each and every day!

temoty posted:

17 years for me and still going with the j-pouch.  Only other surgery was laproscopic(spelling?) surgery to remove adhesions that were causing obstructions 1.5 years ago.

It's great to know that people have successfully lived with a j-pouch for many more years.  I hope I can remain healthy the rest of my years with a j-pouch!

What is the oldest person anyone here has heard of living with a j-pouch?

 

Anyone in their 70's or 80's with a j-pouch?

Congrats on yoour successful j pouch! I am also VERY interested to hear if there is anyone in their 70's and 80's!!!  I hope we get a response! Be well!

4Acure posted:

I've had my pouch for 3 years. It has NOT been smooth sailing. I'm curious, what does a successful, long-term pouch feel like? How many times do you go each day? If you do have problems, what are they? I guess I am asking, what is it like to have a successful J-Pouch?  

Thank you, 

Hi 4Acure...  I have had a few bumps in the road.... A few partial obstructions and a serious one in 2010 that did not require surgery, thankfully.  I live my life with a positive outlook every day, and sometimes that is not easy.... The amount of times I go each day depends largely upon what I eat and what time of day I eat. I use Desitin for butt burn and I drink a lot...I also find that Avon skin so soft bath oil is very soothing and healing.............I have NO personal interest in Avon products, it just works for me and I wanted to share that.  It's a full time job..LOL!!! I NEVER take it for granted. My j pouch really took a toll on my personal life early on, but that"s another story and life goes on! I wish you many, many years of success and health going forward!!!

ytcrockpot posted:

35 years for me

That is so great! What is your key to success?

17 years here. I did great the first 8 years. Then I started to have bouts of pouchitis once or twice a year. Now I have antibiotic refractory pouchitis, and I have been on Humira since June 2013 with very little success.

Linguist, 

talk with your dr about Entyvio 

Hi Allykat, my GI wants to put me on Remicade but I am a bit reluctant. I am at home recovering from incisional hernia surgery now but plan to see him next week. I think we have Entyvio in my country. I'll definitely ask him about it.

Thanks a lot.

This is a nice thread; it is good to hear about the may success stories. Gives us all some hope... 

25 years this week! 

Has certainly not been issue free, but No regrets, and issues or not I don't let it limit me/my life in any way! 

Grateful!