Untitled

HIGHLIGHTS OF NETWORK CHAT ROOM 4.25.05
Note that the transcript from this Chat Room has been edited for topic consolidation
and clarity. The spirit of the discussion has been maintained. Most personal references
have been removed.
Topics Discussed in the Session Include:
NETWORK GOALS
NETWORK DISCUSSION BOARDS & WEB PAGES
NATIONAL CONFERENCE PLANS
CONTINENT DIVERSIONS
GENERAL OSTOMY-RELATED QUESTIONS
PREGNANCY
HELPFUL HINTS FOR CHAT ROOM PARTICIPANTS
REGULAR NETWORK CHAT ROOMS
CONTACTING NETWORK CHAIRS
NETWORK GOALS
"Welcome to the UOA Chat Room. I'm Nancy Italia, UOA's Executive Director. We are happy to meet you online tonight and hope you find this session useful. I am pleased to introduce to you one of UOA's most dedicated volunteers, Mary Jane Wolfe, Secretary and Manager of UOA Networks. Mary Jane and the representatives of the Parents, Teen, >Young Adult, 30+, CDN and Gay and Lesbian Ostomate Networks will be telling you about the benefits of network membership and available resources on our Web site, as well as responding to your questions. Enjoy chatting!"
Network Coordinator - Mary Jane Wolfe
Welcome everyone. We will be answering your questions but first I will ask each network chair to say "a few words." Steve, why don' t you start. Please explain what 30 Plus means.
Thirty Plus - Steve Strizic
Hi everyone. I represent the 30+ network. Some of you know me from our discussion boards. Feel free to ask any questions. 30+ represents folks over the age of 30. We started as the 20/40 network and have now evolved into 3 age related networks.
Teens - Jude Ebbinghaus
The Teen Network is a place where Teenagers (11-17) can go online to seek advice, support, and friendship from kids with similar medical challenges.
Young Adults - Kristin Knipp 2
The third age network is the Young Adults. YAN was created to serve individuals age 18-30 who have or will have diversionary surgery. Our goals are to connect other young adults to peers facing the same issues. We also have three special networks for Parents of children who have had ostomy or related surgeries, those with continent procedures and J pouches called CDN, and GLO. Bonnie, talk about your goals with the parents.
Parents - Bonnie McElroy
UOA's Parents Network supports parents through a variety of programs and services. We support the parents and families of children who through birth defect or disease have an ostomy, other bowel or bladder diversion procedure, or who are incontinent.
Continent Diversions - Lynne Kramer
The Continent Diversion Network is for folks who have INTERNAL pouches to replace the bladder or the colon. This includes J-pouches, Kock pouches, BCIRs, Indiana pouches, etc.
Gay & Lesbian - Fred Shulak
The last network is called GLO. GLO stands for Gay and Lesbian Ostomates. The designation of GLO grew out of the Gay and Lesbian Concerns Committee.
Q – Do you have any expanded "vision" on the networks?
A - I guess my expanded vision is to increase our membership in these networks and keep the networks going. They are necessary for so many people.
A - Joining a network is making a connection with others in the same situation as you. We are all UOA members and support the larger organization. Our networks give us a sense of belonging and making a connection on a more personal level.
NETWORK DISCUSSION BOARDS & WEB PAGES
Q - How is the young adult discussion area covered/moderated?
A youth adult in the J-pouch chat room mentioned having the heck scared out of him by a young lady quoting a 50% failure rate for J-pouches.
A - I am aware of this conversation that went on. We did the best we could to moderate it. We have representatives who monitor all the boards, including our web tech master and others. I apologize that this young adult was scared. I replied to this person, as did others, disputing the statistics that were quoted. I do know the young lady may have been confused about the stats she was giving.
A - That concerns me since I send a lot of people there.
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A - I share your concern and we are going to try to do a better job of monitoring the Board. There is a disclaimer on the board that says any advice or information given on our discussion board is not to take the place of physician’s information.
A - Has someone (gently then) spoken to her to correct that? I would hate to see others get scared away in the same manner.
A - I sent her a private e-mail about the situation.
A - We are all volunteers so we need to keep this in mind.
A - I look at the boards nearly every day, and find most of the postings in keeping with the mission
A - Yes, I im agine statistics depend on so many factors; it would be hard to give just one number on the success/failure rate of j-pouches.
A - We want to offer support, not fear!
A - I will start visiting the continent diversion discussion board.
A - We'll look forward to you contributing!
Q - What else would you like to see on the network Web pages?
We currently have Personal Stories, Conference Information and Membership Info.
A - One of the things we've been talking about in our chapter is the main UOA page should have a repositioned / resized "Chapters" button; we keep hearing feedback from people about how hard it is to locate local chapters from the UOA main page.
NATIONAL CONFERENCE PLANS
Q – What activities are planned for the 30+ network at the national conference?
A - Thirty Plus We have 4 sessions planned and a joint network social on the first night. One session will be a gerontologist, another will be a therapist talking about relationships and one is a general rap session. There is a joint network social on the first night.
A - Personally I'd like to speak with others in the thirty plus network with ileostomies. I've never been to conference or met another person of my sex and type of diversion.
A - Most of us use the general discussion board and you can go to the 30+ page and sign up for network membership. It costs no more than your national membership. We have the choice of being able to share our names and e-mail, etc if we choose. Send me an email later and I can give you more info.
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Q - Is there a "breakout" of the continent diversion network (CDN) activities at the conference?
A - Continent Diversions If you look at the conference schedule posted on the website, you'll see the preliminary plans. A - One of the great things about UOA conferences is the companies displaying products and giving away samples allowing you to try lots of different things...deodorants, ostomy products, clothing, etc.
A - Yes, please come to the conference. They are fun and educational.
A - I'm registered to go to the Conference. My first - I'm excited!
A - You will find the conference is one big family!
A - Conference is very informative and the people you meet will become good friends.
A - First timers have a great time. My husband was a first timer last summer and had a wonderful time.
A - You won't regret it!!!!!!
A – The conference is close to me this year. That makes it nice since it will be my first one.
A - I can attest to the UOA friendships being like family. My maid of honor was my best UOA buddy from the youth rally.
A - The conference is one of the best ways to find new products, learn from others and know you are not alone.
A - I had planned to attend conference for the first time last summer; I'm 51 but the 85 year old I planned to travel with fell and broke her femur and we had to cancel. I wasn't up to the drive alone, but next time it comes to the Midwest, I'd love to go to the UOA conference.
A – Thirty Plus It's possible that 30+ could match you up with a roommate. They did that last year and will do it again this year.
A – Send an email to Rudyman22@aol.com to learn about possible roommates for conference.
A - Start planning now for New Orleans in 2006!
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A - You will have a great time!
A - It’s hard to come to conferences for many reasons. Many chapters will allocate funds to send a person to conference. Try asking your chapter for help. You can bring back a lot of valuable info for your group and have fun for yourself too.
A - Right now all the funds I raise by getting advertisers for the newsletter and in other ways goes towards the youth or the more key officers, not a lot of extra. But I've been mostly the one in recent years in the fund raising position.
A - Parents For the parents and children the conference is a life changing experience. For many it's the first time to meet another family who is dealing with similar issues.
Q - Has the Thirty Plus network ever thought of having mini conferences in the different regions of the US?
A – Thirty Plus A chapter really needs to run a regional meeting. Only a couple of areas have a young adult type group.
A - Young Adults I've been chatting with the Cleveland chapter about holding a young adult regional meeting. We have the Cleveland Clinic here. It is a HUGE colorectal institution and does so many surgeries on young adults.
A - That's a great idea!
A – Three of us are speaking at the Cleveland chapter meeting this weekend and hope to generate some support for a regional young adult meeting.
Q – What has the Parent Network planned for the conference? I'm attending with my daughter.
A - Parents We have 10 sessions planned starting on Wednesday afternoon through Friday - and a family dinner on Friday - everyone invited for fun and games! On Saturday we know that all the parents and kids will want to get to Disneyland or other Southern California park/attraction.
A - I know that my husband and I REALLY depend on the Parents Network and Bonnie. I don't know how we would have made it through the last three years without her.
A - I agree. The Parents and Bonnie do a great job supporting each other.
A - That is why regular chats are good! And eventually, you will meet someone like you and share concerns.
A - I know I went last year to the conference by myself, but it looked like lots of fun for the kids...especially to see other kids 'like them'.
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Q - Has anyone thought of - or is there a network for senior citizens?
A - Actually the seniors are the majority.
A - We are all here to support each other whether we are officially part of a network or not.
A - What's important is for all of us to support UOA - so that the services are available that we need and so that they are there for others.
Q - Are there any chapters that do 'mini courses' on issues? I'd love to see a 'so your child has a colorectal problem' that is family-friendly and reassuring. I know there is print stuff, but I've enjoyed SEEING people. I was wondering if webcasts or something like that could be in the UOA future?
A - We would love to do some Web casts! Unfortunately they are REALLY expensive and we don't currently have the funding. We'll keep trying though.
CONTINENT DIVERSIONS
Q - Would you consider an indwelling foley catheter a continent diversion?
A - Definitely!
Q – Are J-pouches successful?
A - I know first hand about J-pouches working. I am one of three siblings that have lost their colon to familial polyposis (FAP). I have one brother who has gone through the reversal of the temporary pouch to a J-pouch. He is glad he made the choice. And I have another brother going through it next week. I have a permanent pouch since I was 15. And I became a charter member of UOA in 1963.
A - That sounds like a very interesting story. Maybe you'd like to write an article for the OQ!
A - I'm willing to answer or discuss any issues about ileostomies or UOA.
Q - Are there many continent urostomates in the network?
A - Yes
A – There is a group of continent urostomates in the Chicago area 100 strong and most of them are not UOA members - any ideas?
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A - It would be great if we could get them to be members and also to come to conference. That group could possibly be a role model for others!
A - Their president is a member of my home chapter and I always learn about bladder procedures whenever I go to their meetings. But they are an untapped source of info. Their ET at Loyola just calls one of them to visit - they're self-perpetuating! I'll figure this out one of these days . . .
A - We need to talk about this and see what can be done.
A - We'll talk!!!! I would love your input.
GENERAL OSTOMY-RELATED QUESTIONS
Q - Has anyone heard of a card that an ileostomate can take to the emergency room when they have a blockage? If so, how can such a card be obtained?
A – Actually, check with the UOA office as they have a dietary card and a blockage card if that is what you are referencing.
A - UOA has already prepared beautifully laminated cards for purchase. UOA has a laminated card for blockage & emergency room. You can order it online for $10/10 copies at UOA website or phone 800-826-0826
A - Your local chapter can order them in groups of 10. The card is available in sets of 10 for $10, generally sold to UOA chapters.
A - My chapter publishes something in their newsletter which can be cut out and put in your wallet. It states that you have an ileostomy and they should not attempt to give you an enema.
A - There is an article is the current issue of the Ostomy Quarterly on Emergency Medical Data Cards.
A - good to hear
Q - Why do some deodorants work for some people and others work on others?
A – This is a good question. I don't really know but I have two that work for me where others don't.
A - Because each person is different, there really are no universal solutions in ostomy land.
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A - The same reason perfumes or colognes smell different on different people— individual chemical reactions.
A - You have to find what works for you. That's my ostomy mantra!
A - Not all deodorants are good for the same thing. Some will handle odors very well, but not if you eat certain things like cabbage.
A - You need to just try them out to see what works for you.
A - I'll try a few more.
A - The key to becoming comfortable is experimentation. Try new products until you find one that works.
A - I have an ileostomy because of ulcerative colitis (UC) and NaScents and Devrom work for me.
A – NaScents works for my ileostomy too.
Q - Do you swallow those or insert them in the pouch?
A - NaScents is a liquid drop like M-9 and you use it in the pouch. Devrom is a tablet you ingest.
A - I tried the M9 drops I received at a conference and I’m hooked!
A - My deodorant of choice is Ostomy Odor Neutralizer. I buy it direct from the manufacturer in California.
Q - Where do you buy NaScents?
A - Try nascents4u@aol.com .
Q - How do you keep wafers on while sweating in the heat? I am a new president of my local chapter and have an indwelling foley catheter and became a colostomate in May of 2004. With summer coming up I would appreciate any comments.
A – This is always a problem for me. Try barrier spray--works for many.
A - I was going to suggest skin prep applied before the wafer.
A - It will be my first summer with my bag also (outside of the bed). It will also be my first time in the water.
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A - Congrats on being a chapter president! I know in the summer I often tape a light days mini pad to the underside of my pouch so when I get sweaty it doesn't stick to my skin but that doesn't solve the sweaty seal issue.
A - Barrier sprays or wipes and antiperspirants can help. Also, if the bag does not have a cloth back, try making one out of T-shirt material.
A - I swim and hot tub at least 1 or 2 times a week, and usually don't have a problem.
A - I swim 3 times a week in 90-100 degree water and I don't melt! Sometimes my wafer only last 4 days instead of 6 but this is no big deal as long as I keep checking it.
A - I found that the key after swimming is making sure you towel around the pouch a lot so that the area becomes dry. I also swim laps about 3 times a week.
A - Sometimes in the summer with the heat and all, you will just have to change your wafer more. I have never had a problem and have never had to worry about dehydration much either.
A - I make pouch covers that have a 100% cotton flannel backing and they are great for absorbing sweat.
A - My girlfriend makes pouch covers. She also has an ileostomy.
A - I hate to sew and find those covers can be too thick under my clothes.
A - Maybe UOA needs to do an "info sheet" on how to make pouch covers and add this to the publications list.
A – The pattern will be on the Teens page of the UOA Web site soon.
A - You obviously don't know me too well but I am not a very good "techie" and the UOA Web Master has been my guardian angel. But I promise I will make getting those pouch covers online my next new project. Come to the Teen booth at the conference and I'll have patterns and directions available then.
Q - What about swimming in salt water? Is it any different than pool water?
A - Not to me--not that I have been in salt water a lot--but some
A - It shouldn't make a difference although I rarely swim in salt water. Again the key is checking after the swim to see if you need to change.
Q - So is the summer really different than the winter? Meaning, is there anything I need to worry about it? I had my surgery not quite 5 months ago and everything is all so new to me.
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A - Heat breaks things down faster. I typically lose a day of wear time in the summer but I am out in the heat a lot.
A - It shouldn't be any different unless you swim a lot. You may need to change more often.
A - I have an ileostomy and I do not notice a difference in my wafer at all. I only notice a difference while swimming not heat.
Q – My appliance seems to peel off quickly (within an hour or two). Does anyone have any suggestions? I just ordered a spray glue that I hope will work.
A - Try different equipment till you find one that works.
A - I once used a spray glue, and I found it to be very good—the non-sting sort.
A – The spray liquid bandage you can buy at Walmart is supposed to be very good.
A - You can also try "picture framing" with tape.
Q – Does anyone else get discouraged about attending chapter meetings? Sometimes I get discouraged about attending my chapter meetings because it seems my only purpose there is to work for the organization, and I've never met another member with the same sex and a similar diversion.
A - No one at your chapter has an ileostomy?
A - My mom also has Crohn's. But she doesn't have an ostomy. Although she says that she sees how much better I am doing so she's not scared of the surgery at all. If she ever has to go through it, at least she will have me to help her through it and to get her educated and provide immediate support.
A - I too get discouraged at my local chapter meetings. Everyone is much older than I am and they all seem to be more concerned with having a social outing. I don't have very much in common with them. But I made a promise to myself that I would attend the meetings and do my best to spread the word. If someone younger ever comes in, then I will be there to scoop them up. I also just finished the visitor's training so I am looking forward to being able to help people facing or just having had surgery. If there's another chapter that's not too far away from you, check that one out. You'd be surprised at the members that don't attend meetings also but get the chapter newsletter. You could ask the resident of your local chapter to put a little article in for you.
A - Writing that article can help, too--gets you what you are looking for.
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A - I am the newsletter editor, so I suppose I could put something in. Great idea!
A – Parents Regarding not seeing anyone 'like' you at meetings, that's what I like about the Parent's Network. It is really national. There's no way that I could attend a local 'meeting' with parents like us. We live in rural Mississippi. Our doctors have never treated anyone else with Imperforate Anus.
A – It’s a shame that all of this technology is so expensive. We hang on every word of the PTN list-serv. It’s really our lifeline. We get information and support that would be impossible to get otherwise.
A - When you belong to UOA, you can get help from the local chapters (face to face) and also from others in a network. UOA also has a number of useful brochures, books and more. Check us out.
PREGNANCY
Q – Does anyone have any questions for a pregnant woman? I have an ileostomy and am 38 weeks pregnant.
A – Congratulations!
A - Yes, are you nervous about delivery?
A - Good for you! Someone who just left the chatroom had kids after surgery too.
A - We are going to do a special feature in the OQ on ostomies and pregnancies. Can you e-mail me at the UOA office and we can discuss your story?
A – I had my daughter with a C-section making that my 12th surgery (and the last).
A - Thanks. I'm having a C-section later this week. I am feeling all kinds of things right now. Mostly I'm worried about being a good mom.
A - You'll be AWESOME!
A - You will worry about being a good mother forever, but you will be wonderful, I'm sure!
A - My daughter (age 2) is FASCINATED with my pouch. She calls it my POOT. She keeps asking where hers is.
A - I have Crohn's disease also. I'm worried about the baby having it. My husband and I are saving the cord blood just in case there's a break through of some sort. I know there's
12 testing being done on cord blood and Crohn's disease so I want to have every opportunity available to help him (yes, it's a boy) if I can.
A - I too am worried about passing Crohn’s to my daughter, but I know I am best equipped to handle it if need be. I also admire the bond between Jude and her daughter Cheryl and know things will be ok if indeed my daughter one day has Crohn's disease.
HELPFUL HINTS FOR CHAT ROOM PARTICIPANTS
Q - What do I do? This is my first time using a Chat Room.
A - Just ask a specific question or give a comment.
A - My first time also. I'm just reading.
A - Type in the yellow box lower left and then click on Send Message in lower right.
A - I think we have a lot of first time chat room attendees—myself included!
A - You can also use your "Enter" key.
A - This is my first time on the site also.
A - If there is to be a regular chat, a larger window is in order, especially if there is more than one conversation at the same time, something that is very common. A - You can enlarge your window - just drag your mouse to an edge and when you get the double arrow pull the edge to the size you want.
A - You can drag on all sides of the screen to make it wider and higher
A - The chat window doesn't enlarge.
A - The chat window is resizable, using whatever method your operating system allows.
A - The chat window--not the whole page, is pretty small--with all the logos etc at top, right side and bottom.
A - If your computer is fairly new and doesn't have Sun Java installed, the chat won't work.
A - We have the Microsoft Java that comes standard, but we didn't upgrade to the Sun version that I have to use to be a UOA speaker - I think that there is more going on with browser settings and/or firewall settings - but I couldn't find it!
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REGULAR NETWORK CHAT ROOMS
Q - Would you like this chat to be a regular event or perhaps separate chats?
A - I think it's good to have a group chat--not too often we get everyone on the same plate except at the conferences.
A - A regular event.
A - I think it would be good to have a regularly schedule chat time.
A - I like the idea of a regular chat with all the networks...it’s like a family gathering.
A - Just how "regular" is regular?
A - I think a chat can be good if regularly scheduled.
A - I like the "regular" idea. I haven't been "regular" since I was 9 years old!
A - There are a number of ostomy chatrooms running--with main set times--but one here would be a good idea.
A - I agree and now that we have started it the next time will be easier.
A - Parents I also like the concept, for the Parents at least, of not only a general chat, but f topic chats - like one on school issues, on management issues or on surgical choices with guest speakers.
A - And it would be good for the parents because sometimes they just don't know the questions to ask.
A - True - and it's hard to see that your baby is going to grow up to be just a "typical teen" - but they sure do!
A - In addition to guest speakers, there could be a question and answer period with a doctor in attendance.
A - Later this year we will have a Chat with an ET, and then another month one with a doc. That will primarily be Q&A.
A - Young Adults I think a young adult chat relating to issues young adults are dealing with would be beneficial too.
A - And there can be joint chats - one for the parents so that they can talk to some of the teens or for teens to ask the young adults about going to college, for example.
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A - More than one chat room is open 24/7 and they are often quite active in the afternoon US time--no set issues other than ostomy in general—the joint chat suggestion looks like a good one to me.
Q – Do you mean separated by network affiliation or type of diversion?
A - Either
A - We would need to poll those interested to determine the best day and time.
Q - How long have you all been doing this chat?
A - This is only our 2nd UOA chat session.
A - And our first network chat!
A - Wow, so it’s sort of a shake down!
A - Our first chat was last month. We have several topics planned for the future and we are looking into general chats. We are seeing how much interest there is.
Q - Are any Teens in the Chat Room?
A - I'm a teen. I'm going to the rally. I'm looking forward to it. Last year was great!
A - It will be great to see you again!
A - Our next chat is May 9 and will be for rally kids and counselors.
CONTACTING NETWORK CHAIRS
Q – How can I contact one of the network chairs if I think of something to ask after this chat?
A - Thirty Plus Go to the discussion boards sometime and look for Steve S and click on my name and send me an e-mail. I can answer more specifically then for you and any others. My e-mail address is sstriz@hotmail.com .
A - Parents The Parents Network can be contacted by emailing me at parents@uoa.org
A – Teens uoatncochairs@hotmail.com for the Teen Network.
A - Gay & Lesbian My email address is: thadbear@sbcglobal.net . The GLO address is: glocontact1@aol.com .
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