UOAA Discussion Board

As many of you know, the First UOAA National Conference is happening in Chicago this coming August. The Continent Diversion Network will have it's own sessions scheduled, and I need your input as to topics you would like to see presented.

You can post your comments here or email me privately at lkramer22(at)verizon.net.

Thanks !

Lynne
CDN Chair

I'm bumping this back up to the top of the board again because I haven't gotten much input from you folks ! The UOAA Board of Directors meets this weekend, and I would really like to incorporate some suggestions from all of you in our conference schedule.
If you have any ideas for sessions, topics, etc. PLEASE respond or email me !!!!!
Thanks,
Lynne

I don't have a continent diversion, though I considered one. However, I did go to a seminar a while back. One really interesting topic was "Pouchitis as a form of IBD and how to treat it," or something like that. They had a GI there. He went over all the different types of medication that are used to treat it, and their potential side-effects.

I found that to be interesting and informative.

Although I don't know that this would be a topic, my question is; once Fazio, Bauer, Launer and the few others stop practicing medicine, will that be the end of the Kock pouch? which is still an alternative to wearing an external appliance or a failed jpouch.

The pouchitis topic is certainly relevant.

mdg and lesson,

Thanks so much for your ideas - they are much appreciated ! Lesson, I know that Dr. Fazio has trained many, so my guess is that hopefully, they will continue to deal with Kock pouches.

Lynne

Lynne, so sorry to have missed this post and your request until after your meeting. I haven't had much time last few weeks to keep up here. Though I am not planning on being at the conference I was wondering if there was any interest, other than my own, in environmental exposures and the connection with the dramatic increase in autoimmune disorders, fertility problems, cancer, and learning disorders. There is so much more scientific data being gathered in this area and I wondered if I'm the only one here who questions the source of my own disease, as well as why so many otherwise healthy young people suffer with critical illness.

Thanks so much for all your work on the conference.

Bea

Hi Lynn,
Are you getting many of the Kock pouch folks signing up for the trip this summer, or is it too early to tell.

Being a new j-poucher I can think of a lot of topics......

1. Butt burn - how to cope?, products to use? foods to eat to thicken things up? suppliments that work?

2. Slowing out-put down - foods, suppliments, drugs (immodium, lomotil).

3. Dealing with gas in the pouch

4. Cramps

5. stretching the pouch.....how long is to long to hold it? ways to damage the integrity of the pouch

6. Talk about a basic overall "plan" on how thicken out-put, reduce gas, stretch pouch, foods to eat, foods to avoid, time-table for improvement

7. dealilng with complications (increased bowel movements, pouchitis, etc..)

Dealing with an active work environment... either on the road a lot, working on the street, limited bathroom availability, how to control the pouch on the day to day basis depending on its behavior.
I know some of these sound repetitive, but they all kind of overlap with each other.....

I do not believe I will be attending, however, as a new poucher (Indiana Pouch) , I have some questions, topics etc. Will there be transcripts, CDs, DVDs or something available for purchase after?

1. How do changes in weather impact you? I find I have more pain, sensitivity and more leaking when weather changes

2. How do you clean and keep your catheters clean?

3. What products do you use to cover your stoma?

4. Are there any type of OTC mediacations or vitamins that will help prevent infection or pouchitis?

5. Are there any types of food or drink that tend to make you leak more, or that seem to irritate your pouch?

6. What other types of complications, changes in your lifestyle have you made due to your surgery? Do you have any regrets?

7. Average "age" of the pouch. Should I expect to need to look for other options in the future? In other words, based on current stats, will my pouch outlive me?

8. How do we raise awareness of CUDs? Most people are familiar with or have known someone who has known someone with the traditional "ostomies". Not many people know of or have even heard about the ability to create a new bladder to replace loss of one due to cancer or other issues.

9. How many of our ostomies are due to X condition? I hear/read alot about IBD, Chrones, cancer, UC, etc. and would be interested in seeing some data regarding this. Me personally had none of the above yes had an end stage bladder that required replacement for any quality of life at all. We still have no idea what caused the problems or why it became so bad so rapidly. Medical terminology is simply....a bad case of Squamous Metaplasia of the bladder.

That is enough I am sure, hope to make it but not sure what work load looks like that for out.

Thanks for the opportunity!

jpotts,

Thanks for the suggestions.

Lynne

just wanted to say that i (a kpoucher) live in chicago and just can't WAIT for the conference!
i hope to meet other kpouchers.

Anywho, um...i'd like to echo what bbcopper was mentioning, and expand.

my concerns are more in the areas of travel.

Does cabin pressure on planes affect pouch (i swore i had some MAJOR cramping when we went up, but when i got off the plane (without having emptied or done anything) the gas pressure and cramps let up significantly.

and what bout foreign countries? it was always my dream to move to Brazil...how is health care in other countries for little known surgeries such as kpouches?

how is the international community at regarding/dealing with continent ostomies?

i'd also love to see a variety of manufacturers come out with products for us (i.e. Weber-judd, Medena, AMpatch, marlen, mestopore, etc)

It'd be nice to be able to compare products right there instead of doing things like ordering online, waiting for stuff to come, checking it out, and making a decision.

and in opposition to bbcopper, i'd like to know about diets for kpouchers (where the goal is sorta the anti jpoucher diet. we want to thin things out, not thicken! hehehe)

i'd also like a more in depth look at probiotics for continent ostomates, are there benefits, what are the benefits, etc.

Cynnycal,

Looking forward to meeting you in August ! Thanks for all the great ideas - we appreciate your suggestions.

Lynne

PS. Look for my PM

Hi Lynn
I will be at the conference, I would love to have more info on Pouchitis Treatment & outcomes, pouch fistula's I have had my r/V fistula repaired 4 times it still leaks is there a better way?

Iris,

I look forward to meeting you ! What kind of diversion do you have ? Pouchitis is a topic on our schedule.

Lynn I have a J-pouch