Help is needed!

I remember years ago when I first went onto J-Pouch - I wonder why the Cleveland Clinic can't offset this website -- it was 19 years when my daughter got her j-pouch and it was thru a general google did I find out anything about a j-pouch - - she is looking for a moisture barrier and pads - U gave told people about the jpouch.org - but letting people know how products affected them would be great -

I'm going to go out on a limb here: why not create a Subreddit? Is free and you can choose who you want to moderate it. Plus there is already an active Crohns subreddit so they would love an additional support group that would coexist together.

The Crohns subreddit link for anyone wondering:www.reddit.com/r/Crohnsdisease

I am mailing my donation today. I agree with other posters, let us know if you need more. I did not send a lot as the spouse is out of work at the moment, but will dig deeper if needed. I cannot imagine going thru the whole process of this surgery without this site. It grounded me. I felt informed whereas if the site had not existed, I would have just been going with the flow in a state of controlled panic. People need this.

Contribution made. Huge thanks to all who participate in any way. You are all invaluable and so very appreciated.

I may not be "active" on this site all the time anymore but I still check-in regularly. This site with the wonderful people on it saved my life and my sanity many times over. I can't imagine it not being here!

I have made a donation...I hope it helps! I will continue to send whatever I can, when I can. The PayPal option is very convenient.

Thank you sooooo very much for keeping this site alive

Alex

Just wanted to mention that the FB board is for members only. Your friends, etc. won't see anything from the site.

Bill, having met you several times in person and benefitted from your wisdom through the years, whatever you decide to do is fine with us. If you want us to pay a yearly or monthly fee, you got it!

While my donation is probably small in comparison to others, I am going to try to make a point to contribute more often.

Happy to support this site. It helps so many people and is a real service.

Question: is this group nonprofit status? Am wondering if donation will be tax deductible.

Thanks for all that you do!

As far as I know staus as a charitable organization has not been obtained. It would qualify, but you need to go through the IRS hoops to get there.

Jan

Done. Thank you all for all you do!

They are a lot of hoops too.

J-pouch.org has been so helpful to so many people... and it has been a real life-saver to me personally during some of my most desperate times. I would be devastated to see it go. :-( So first off, thank you from the bottom of my heart for all the help, advice, knowledge, hope, and inspiration this site brings to so many thousands of people.

Cutting out some of the extras (like chat) would be okay. Exporting to a new site as Jan said would be fine, and we would follow you... but switching over to a media site like Facebook just wouldn't be the same, because you couldn't browse different sections/areas of interest or search for a specific term or question.

I'm about to make a donation right now, and I would even rather pay a small annual fee than see this site disappear. Whatever you need to keep it going, please let us know and we'll support you!

Morning

My donation is in mail today.
Delphi forums has similar forum like this one,Not sure of it s pricing thou

Casiecass

Hi - I was out of the loop since the ileostomy and j-pouch - I was always under the impression that this was thru the Clevelan Clinic - things have changed now with cancer of the colon (without a colon) but in a connecting fistula - and glad to see it J-Pouch org that is :-)

FYI - Facebook has a good pulmonary embolism group which I belong to - I looked up colon cancer and they did have a series of groups - with https - and a person monitors - with so many people with different knowledge of how to operate Facebook, and I am one -it would be a little scary- it is interesting tho - Stomamate - Poopville - everything kind of crazy - yes I do like the J-Pouch group the best but it is interesting to read about others in the same state of health

I've just joined to say, please don't shut down the site, and I will also help contribute to the costs.

I'm new to all of this, was diagnosed and had my two surgeries all in the past 4-5 months. As you all will testify, it has been a struggle, and this forum has been an important source of information and help for me. It is tremendously isolating to go through this and not really know who to turn to for real-life help.

I would support a monthly member contribution. As others have expressed, I wouldn't feel comfortable on FB, and also agree that it would be difficult to organize information by topics.

Bill, I don't know who you are, but you've done a mighty service to humanity by starting this site.

Anushka - FYI
You can search this site for key words to look up past conversations on subjects you might have questions about. Find the magnifying glass and search for the word(s). It comes in real handy in the middle of the night when you want to ask a question and need an answer right away

Welcome to the site! Of course you can ask away without searching but I've found that a nice feature of the site. You can't do that on FB.

This site and all of the participants have been such such a help to me. I often recommend it to my patients as well and hope it continues to be up and running. I am happy to donate what I can and will continue to support you. Thanks Big Daddy and all.

I logged to get an answer to a serious question and found the request for financial support. You got it! Please everyone this is too important to ignore. This site provides thousands with critical information and support.

Folks - I always thought that Cleveland Clinic had a lot to do with this website - I saw recently where someone from CC goes to this website - in fact when daughter had her j=pouch for UC it was Cleveland Clinic who told me about it - On Facebook they do have closed groups - I pulled colon cancer - and they have ostomates - poopville -colontown - and pretty well controlled -

Dot2 - Cleveland Clinic does not pay for this website no does any other hospital. The sponsors above use to pay voluntary funds for the costs of the site but they are no longer doing so. (Coco, VSL#3 etc.) This is why we are all contributing, donating money to the site to help pay for it.
Thanks

PayPal is how you would use a credit card.

Jan

Thanks, Jan, as usual you have all the answers.

I've been waiting for my new American Express Card that I just received yesterday and used it for the first time for this worthy cause. I only wish it was available in Jan of 1996 when I first had my surgery. I felt so alone and there were always so many questions I had that were left unanswered. This site is truly a Godsend to newbies. We did have the CCFA magazine back then. In the back of the book would be people's names (a separate code number for each person)and a comment from them I believe. You would send your correspondence the CCFA PO Box and they in turn would send it to the person of interest. I would eventually get a letter from that person but this would take weeks. The letters were such a welcome however and this is how we corresponded in the dark ages. I did get off the subject but again, this site is so invaluable. There are so many wonderful people who are willing to offer great advice or just some kind words and when you are feeling so down and out, it's comforting to get a reply. And yes, Jan does seem to have all of the answers, Mema, and I truly love this woman for what she does and the knowledge she shares. And thank you Bill for all of your support.

You took the words right out of my mouth
Donna H. and thank you, too, for being my BB
(butt buddy) over the last few years, and for the never-ending emails.

What we ever do without this amazing site and for the many caring and wonderful people coming to our rescue, ALWAYS!!

I have been a member of this site since 2001 when I had my j-pouch surgery. I have traveled 3 times and met a lot of you at Judy's get together and the UOA convention. I just made a small donation that I wish could be more, but I just had cancer surgery and being on medicare I am a little short on funds. BUT!! I would not want anything to happen to this site. I do not post much, I lurk every few days to check on my j friends. Oh my J is and has been great and all looks good that I beat the #$%& out of the cancer.

BUDMAN

Just donated!! I'm half having a heart attack at the THOUGHT of not having this site!!! You all keep me sane! I have received more help here than any dr has ever offered. I am SOOO thankful to have you all! Please let us know if you need more. I can possibly donate more at a later time too. GIVE ME J-POUCH.ORG OR GIVE ME DEATH!(that was sarcasm of course)

Hi, my $.02 (will donate once I figure out where in this post the donate info is!)

1. Most importantly, thank you very much for an absolutely fantastic site!
2. While I hope Facebook stock takes off here soon I do not use Facebook. My feeling is that a general forum easy and available to anyone on the internet is preferred.
3. I've always thought that a Forum was best as a living tool ... lots of times you see people respond "you should have used search," but a new member asking a question that has been asked many times in the past is always met with a quick response from Jan and others -- and even new contributors. Keeping old/old data can be quickly regenerated by new posts, IMHO. How many people dig deeper than the first page of posts?
4. Frankly, if all of us were made aware of a new site my bet is we'd happily bring our eyeballs and posts and a few dollars to a new site that was less expensive to maintain (if available!)
5. I also have a web design (SQL-ASP) background (check out Fitness-Singles . net) for my friend that I helped build several years ago, but I have been out of the loop for a while and not up to speed with the latest forum technology so forgive me if I'm out of touch!

[UPDATED: DONATED -- thank you!]

I agree about Pay Pal - if anyplace wants to be paid by Pay Pal with no alternative - then I go somewhere else -

Dot - you pay with your regular credit card. If you don't want to do that, you can always send a check or money order.

kathy

PayPal is a safe way to pay with your credit card as only they have the information so you can pay at many sites using PayPal versus giving your credit card information to many sites. I don't like giving my credit card information to smaller sites and if I ever have a problem with the goods I receive or don't receive I can complain to paypal as I paid through them - plus I can complain through my credit card company.

Done!! Paypal is the easiest way
Thanks for this site...It's a comfort zone for jpouchers

Yeah, you don't need a PayPal account to donate with a credit card here, but the payment is processed through PayPal. It does make it more streamlined (and protected) if you use your PayPal account. But, whatever floats your boat! I know there are people who have issues with PayPal for whatever reason...

Jan

I do not touch pay-pal - never used it - someone was buying computers with my government credit card - I turned it over to higher authorities as pay-pal kept paying. Strange I just got a collection notice for a e-bay purchase - do not even recognize e-mail address

Hi David - I belong to the closed Colontown group on Facebook - I have inquired about a J Pouch group with no success - they do have a stoma mate - caregivers - about five different groups under the Colontown Group - I found it by just entering colon cancer in Facebook - and here all these years I thought the Cleveland Clinic was sponsoring the J-pouch but I originally found out about it 19 years ago for my daughter

Sorry Dot2, you obviously are using a different type of credit card than we are using. I feel bad that it is giving you all of these problems as it appears as you are the victim of identity theft. Hopefully the Government has issued you a new card or you have opened a bank account so they can transfer your benefits money into it instead of issuing it through a card.

I don't know of any groups that are sponsored by Cleveland Clinic or the Mayo Group. I have read many articles written by their employees, when conducing searches about specific topics, that have been very helpful.

Dot - if you don't want to deal with Pay Pal you can just send a check or money order to:

The J-Pouch Group
2205 Pemberton St
Philadelphia, PA 19146

kathy

In addition, that does not sound like it was a PayPal issue, but an identity theft issue, based on the credit card, especially since you never have used PayPal.

By the way, who is David?

Jan

Bill,

I found it very difficult to find the donation page.

I had to click on Jan's profile, then scroll through her posts to find the "Help' topic.

You really MUST be more IN YOUR FACE with links to donate.

You are not a shameles begger on a streetcorner. You provide a valuable service and you should be blowing your horn loudly and unapologetically!

Also, what about this new funding site that allows people to make donations / investments in things they believe in? Can't think of the name.



.

Crowd funding. Gofundme.com



.

Oh, ok.... After putting on my super-magnifying Mr. Magoo glasses, I see the "donate" link buried among the other links at the top of the page, in about 4 point type.

Bump that up, Bill. Make it up front and in your face.

Really. You shouldn't be shy about letting folks know that this site isn't free to run, and you don't exactly light your cigars with $100 bills.



.