Looking for Active J-pouchers on this Site

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HungryHamster
Dec 22, 2017 1:44 pm

Good evening,

As some of you know, I had my J-pouch surgery late last month (23/11/17, to be exact). Whilst everything is going quite well thus far, aside from a rather large and unexpected abdominal wound that had to be opened to let an infection heal, I feel as though I've lost part of my support network with this surgery. As the name of this site suggests, this is a site for ostomates. Simple as that. Despite this, there's still a section of the forums dedicated to J-pouches/ostomy reversals, though I very rarely see any posts in this category. I know there are sites such as jpouch.org, but I've felt almost at home here over the eight months that I had my ileostomy, as I got to know quite a few of you through forum discussions.

Are there many people with J-pouches that still use this site regularly? If not, then so be it. I suppose that's the way life is; I gain a support network with one surgery and lose it with another, and so I may have to move on to a more appropriate website for me. Whilst I'd prefer that not to be the case, I completely understand why J-pouchers may not stay here, what with the site being called "MeetAnOstomate".

I won't go deleting my account or anything, and I'll still check back here semi-regularly to hopefully offer a helping hand to someone else every now and then, as people here have done for me. It's only fair.

Thanks, as usual, and a very merry Christmas to you all

Hamish

Bill
Dec 23, 2017 6:30 am

Hello Hamish.

I cannot see any reason why you should not continue to use this site as I am sure there are others in the same position as yourself who visit here. 

Whatever you decide to do, I hope everything goes well for you.

Best wishes

Bill

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First off, this is a pretty cool site with 37,507 members who truly understand you.

It's not all about ostomy. We talk about everything.

Many come here for advice or to give advice, others have found good friends, and some have even found love. Most importantly, people here are honest and genuinely care.

🛑 Privacy is very important - we have many features that are only visible to members.

Create an account and you will be amazed by the warmth of this community.

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veejay
Dec 23, 2017 7:06 am
As the teenagers say, Hamish, I 'totally' agree with Bill. Please stay on the site. Yes, it might be known as "meetanostomate," but in reality, not many actually meet. It is a worldwide site after all.

One of the age-old nuances of the site is that a lot of members seem reluctant to get involved. And I don't know why. I have asked the question in the past, but a definitive answer never surfaces.

I suspect stage fright. It can be daunting revealing your true feelings to people you don't know and most probably will never meet.

Keep on posting, Hamish, even if it is semi-regularly. I know there are people on this site who know firsthand the trauma you have unfairly experienced and would like to follow your progress.

You never know, you might find that supporter you seek.

V.J.

P.S. Have a great Christmas, Hamish. 2018 has to be a better year for you.
bluemusic4us
Dec 24, 2017 3:01 pm

Hamish,

I am probably in the very rare section of people that had a J-pouch surgery but never had the reversal. There were some complications with leaking and the J-pouch so I had to keep the ileostomy. Although the J-pouch was never hooked up, it still leaks and can be a hassle. It's been six years now. My life is so much better now after the surgery so I am not complaining. After surgery, they thought there was an infection in the incision so they opened up to look and it had to heal that way. That made things really difficult since that was right next to the pouch.

So I can't completely relate to what a functioning J-pouch is like, but I hope yours goes well!!

James

Gr8g8ts
Dec 25, 2017 12:49 am

What is a J-pouch?

 

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Play
Russell
Dec 26, 2017 11:07 am

Hi, I've had my J-pouch for 21 years now and life is good. We will never be normal but can lead a good normal life. My hate about the pouch is going to the toilet about 8 times in 24 hours and love being outdoors and not always able to find a toilet. Try to eat a good varied diet and chew your food well, remembering that the more you eat, the more your pouch works. With me, too much chocolate gives me diarrhea. I take loperamide tablets, 2 with breakfast and 2 with dinner. Well, any questions, ask away and good luck.

HungryHamster
Dec 29, 2017 2:22 pm

Thanks for the replies, folks. I hope you all had a merry Christmas.

I won't be deleting my account on here any time soon. At the time of writing the initial post, I was feeling a bit confused about where to go for support. I will most likely join a more J-pouch specific website in the near future, but I will still be returning here. As Veejay wrote, there are plenty of people on here that may be too uncomfortable or shy to actually start or reply to a post themselves, and so reading other people's responses is where their questions will be answered. While I am no longer an ostomate, I was one, and so I still have that experience which could go to good use. Hopefully, by remaining here, I can help people who were like me when I first joined.

Another reason I will certainly not be leaving is because of the genuinely great people I've met on here. Everything I have ever posted on here has been met with fantastic support and friendliness. As I said in my opening post, this site is like a home now because of the great people I've come to know on here.

Thank you all for everything. I hope to continue conversing with you all, whether it be stoma-related or otherwise.

Hamish