| Name: | Pamela |
| E-mail address - optional: | mprocks@ix.netcom.com |
| Country: | USA |
| Comments: | I found this site while looking for information for better skin care due to breakdown from a yeast infection. I work as a RN in a PICU. Any info would be helpful. Thanks for all the info and you have a great source of and network of support out there. Keep up the good work. |
| Name: | Bob Noga |
| E-mail address - optional: | Pumpkinkitty@msn.com |
| Country: | USA |
| Comments: | Thanks |
| Name: | LeAnna |
| E-mail address - optional: | therese_1@hotmail.com |
| Country: | USA |
| Comments: | hey all you fellow ostamates. I want to commend all of us that want to support each other with our trials in ostomy world. I just want to encourage people to email each other. It seems as if every time I read a story on a ostomy page and I email someone, replies are rare. SO don't be afraid to talk to someone that is going through the same thing. :) |
| Name: | Wendy Barrie |
| E-mail address - optional: | barriews@optusnet.com.au |
| Country: | Australia |
| Comments: | To find so many people, is so heartening. Makes you soar to new heights, when sometimes you can be very low. I have had an ileostomy for over 3years, having a relocation of site of stoma,last year, because of hernia & flush stoma. Everything pretty cool now considering. And We are Still Here ! That's pretty good in its self. Love to hear from others, who want to take the time. All the Best...Wendy... |
| Name: | Joan Larsen |
| E-mail address - optional: | Britooo7@wmconnect.com |
| Country: | USA |
| Comments: | Thank you so much Larry,for this site .it save my life.I was so depressed and felt so sorry for myself,I thought I was the only one in the world with this ostomy bag.I ahd anel cancer .had to have 12inch removed from my colon. I cryed a lot at frist as all my family live in England .Have a wonderful husband who was there for me. I still havea lot of problems with adhesives I am allergic to plastic/latex products. If any one out there is having the same problems please email.Thanks to the wonderful news letters and Larry I dont know how i got through this.Thanks to God and Larry and the Evansville Indiana Ostomy Chapter. |
| Name: | Elizabeth (Betty) Breese |
| E-mail address - optional: | breese4@mindspring.com |
| Country: | USA |
| Comments: | Sue Wilson, R.N., ostomy nurse for The Mayo Clinic Scottsdale refered me to your web site. |
| Name: | Gil Saenz |
| E-mail address - optional: | gjs1942@aol.com |
| Country: | USA |
| Comments: | Thank you for this service. It has been both interesting and informative. |
| Name: | shelley |
| E-mail address - optional: | shelley_t_92@yahoo.com |
| Country: | USA |
| Comments: | I have had a colostomy and urostomy now for 2 years. |
| Name: | Helen Appleby |
| E-mail address - optional: | gary.appleby@ntlworld.com |
| Country: | England |
| Comments: | I had my surgery in January 2001 at the age of 25, due to a severe flare up of Uc, having had UC for 3 years. After my op my surgeon came and told me my colon was 5 times its normal size and had started to perforate, I still have days when I feel on a bit of a downer and getting used to things, but I should be thankfull that I am here to tell the tale!! I would love to here from fellow ostomates to have a chat and meet new friends. |
| Name: | Yayoi Fujisawa |
| E-mail address - optional: | yayoi99@jcom.home.ne.jp |
| Country: | Japan |
| Comments: |
I would get The book " Yes We Can". How should do to get it? Yayoi |
| Name: | Eileen Davidson |
| E-mail address - optional: | eileendv@aol.com |
| Country: | USA |
| Comments: | You have sent me some very informative articles, and I appreciate them. It has been a while since I read up on how to take care of my ileostomy. |
| Name: | Robert A Buck |
| E-mail address - optional: | rimfire@adelphia.net |
| Country: | USA |
| Comments: | I read your news letters ,
and they are great !, So nice of you to provide them !. Thank You !! |
| Name: | Jan Weinraub |
| E-mail address - optional: | weinraub@earthlink.net |
| Country: | USA - New Hampshire |
| Comments: | I'm a regular reader of this newsletter. We, in Conway, New Hampshire, are not priveledged to have a local source of information. Locally, there are no ET nurses at our hospital. Our local general surgeon is competent in ostomy surgery, but himself needs education in the finer points of what it means to be an "ostomate". I refer to the multitude of tips, pointers, pitfalls, etc. (available in your newsletter). The majority of physicians and nurses here need educating also. I have passed on what information I can glean from your newsletter. Whenever I have a "chance" encounter with the medical profession, I am prepared with a written (in lay terms)medical history, plus information particularly pertinent to ostomy care and caveats. Jan |
| Name: | Ruth Phipps |
| E-mail address - optional: | Denimruth4519@cs.com |
| Country: | America |
| Comments: | Hi!
Every time I visit your web site I stand in awe all over again. It blows me away every time. I just *must* thank you again for such an excellent web site. Good Job !!! Thank you for your dedication to the task. Your efforts are seen all over the world via the Internet and I know that this is only *one* ostomate that appreciates all that you have done and are doing for us. There are many more around the world, I'm sure. Many thanks again. Warmly, Ruth |
| Name: | Kathryn Baxter |
| E-mail address - optional: | kb442@columbia.edu |
| Country: | USA |
| Comments: | wonderful site; glad to refer my patients to it. Keep up the good work. |
| Name: | Andre L. Inman |
| E-mail address - optional: | ajazzy2000@aol.com |
| Country: | USA |
| Comments: | This website has helped me emotionally as well as providing me with good ways to take care of my skin around my stoma and giving great advice on new pouching systems.Thank you so much. There is life after surgery! |
| Name: | Margaret Hawes (Maggie) |
| E-mail address - optional: | mmhawes@webtv.net |
| Country: | U.S.A. |
| Comments: | Dear Larry, thank you for providing an Ostomy Newsletter each month. I live in a small rural community that doesn't have an ostomy chapter any more but we do have a good ET that the hospital provides, free of charge.
I look forward each newsletter, reading it from start to finish. Thanks again. Sincerely, Margaret (Maggie) |
| Name: | Becky D. |
| E-mail address - optional: | MNSun4U@aol.com |
| Country: | MN, USA |
| Comments: | I'm a member but that's ok, I can complain here too, huh?
Well, here we go in the Good 'OLE summer time and rashes after so many abcess's and now deep scaring. Well, my sister, MD, presribed, well gave me some and now wrote it up to get pharmacy to order it. It's a spray in a spray bottle called Nursing Care. It's just this clear like pink stuff that I spray on and AROUND my stoma and w/a sore the 1st try, eouch, but now I use for prevention. I've had sores turn into HUGE abcess's that looked as one gouged my skin out. This although really seems to help though. I love it. I just spray it on when I'm going to have the water coming down on my back when washing hair and then my back so to leave this spray on for awhile as it rinse's right off. Made by Smith and Nephew. Order #448000. Just an FYI. |
| Name: | Robin Scott |
| E-mail address - optional: | rgscott@e3.net.nz |
| Country: | New Zealand |
| Comments: | I am part of a family that has had to deal with FAB (famillia poloposis of the colon), and have already lost my father and older brother to this complaint. At this time I have 2 daughters with a J pouch ( they have had it for 17 and 25 years without any problems ) and one of my granddaughters is having a reversal in a few days, as well there are 5 more grandchildren and the chances of some of them having it as well are very high. I have learned many tips through getting the Evansville news letter, and wish that this medium was available in 1966 when I had my first surgery. I am 62 now and tried the J pouch 3 times before having an ileostomy in 1994, now I'm content to live life to the best of my ability. Anyone that would like to email me that would be nice. Robin Scott an ostomate from NZ |
| Name: | Pam |
| E-mail address - optional: | hhughes@houston.rr.com |
| Country: | U.S.A. |
| Comments: | I am new to this site and so far i am very pleased with it.
I've had my permanant ostomy almost 2 years now and this is the first time i've been able to talk about it. I give God the credit for this and also to the people on this web site, Thanks, Pam |
| Name: | Alexes A Hourigan |
| E-mail address - optional: | alexes@antelecom.net |
| Country: | US |
| Comments: | Great Web Site - Thank You
With four stomas I'll take all the handy hints available. Alexes |
| Name: | Carol |
| E-mail address - optional: | turner@svic.net |
| Country: | USA |
| Comments: | After 27 years with a permanent colostomy, during a routine colonoscopy last month my colon and abdominal lining were punctured. After emergency surgery to remove the original stoma and build a new one, after 11 days in the hospital of recovery and with complications of a small bowel obstruction, I felt as if I were starting all over. Am now awaiting further surgery to correct the "cone-shaped" healing of the wound area -- it affects placement of the appliance. Not sure how I was placed on your mailing list, but I've enjoyed your newsletter and tips. It's really a great improvement over what I had to "help" me 27 years ago. Thanks for you efforts! They're well worth your time. |
| Name: | steve |
| E-mail address - optional: | flintse@hotmail.com |
| Country: | usa |
| Comments: |
I just found this site and it is nice to see others with the same problems. i had my surgery on march 12. I havw had feelings of being alone and now i have somewhere to go when i start feeling bad. thank you so much,for us haveing a place to go. steve |
| Name: | Melissa Hoaglund |
| E-mail address - optional: | Melissahoagie5@aol.com |
| Country: | U.S.A. |
| Comments: | My 3yr old daughter has a urostomy and I think her bladder has prolapsed. I have spoke with an on call urologist, and she said as long as Haley was not in pain, the bladder looked red and not purple, and she was draining, that it should be fine for now. I called her late Sunday night so she just said follow up in the morning with our urologist. I just like to know from someone who's been there what it's all about. I like getting the medical info, but there's something to be said about talking with other people who know the in's and out's of all of this, Thanks, Melissa |
| Name: | Tyson Gutschow |
| Country: | USA |
| Comments: | I had the bag for 1 year and 3 months after 2 unsuccessful reversal surgeries the 3rd finally worked. I remember when I first was told I was going to have my colon removed I was in shock and disbelief. This is the first time I've been back to this site since my reversal. I just wanted to say "thanks" for all the suggestions and help!
Peace and Love, Tyson |
| Name: | Janet Jackson |
| E-mail address - optional: | NorrahjJ@netscape.net |
| Country: | USA |
| Comments: | This site is the greatest. I have learned so much from reading the newsletters. Everyone's body functions a little differently, but there are many hints that work for all of us.
Keep up the good work. |
| Name: | Judy Johnson |
| E-mail address - optional: | judy@kcnet.com |
| Country: | USA |
| Comments: | Love the site. I check it very often and frequently find something helpful to me(with ileostomy) or to my husband(colostomy). Thanks for a wonderful help!! Judy |
| Name: | bobstephens |
| E-mail address - optional: | steptoe@cnl.com.au |
| Country: | australia |
| Comments: | You asked for honest comment,you got it Larry.This is anexcellent medium for us ostomates,something that was badly needed.I think you are doing a good job on a new project, and it can only get better as you go alongI say this in all sincerity ,your faithfully, Bob Stephens. |
| Name: | Edie Norling |
| E-mail address - optional: | rrent@tds.net |
| Country: | USA |
| Comments: | Want to thank you so very much for this column. Before I found this I felt like I was the only one in the world with an "ostomy" and the problems that can be associated with them. The columm has put light on this condition which allows me to better cope and share with others who are the the place I so recently vacated. You've done great!! Please keep it going! A BIG THANKS! |
| Name: | Frank DeDoming |
| E-mail address - optional: | frankde@frsb.net |
| Country: | USA |
| Comments: | I think you are doing a wonderful job with the web page, I don't know how i would ever get the information you provide.
Please keep up the good work, i'm sure all ostomates appreciate your efforts. Frank DeDoming Robinson, Il |
| Name: | Peter Sorensen |
| E-mail address - optional: | nepe@privat.dk |
| Country: | Denmark |
| Comments: | Dear Larry.
I am chairman, in the Copenhagen chapter of the ostomyorganisation in Denmark. I think that your site and newsletters are very usefull, i have extracted many good informations , from the material, that are usefull in my daily work for ostomates. The site are very user friendly, and i enjoys to see how it works in your country, in Denmark we are aprox. 10.000 ostomates. If any members are coming to Denmark, i will be pleased to provide information of our country. Greetings and thanks. Peter Sorensen Copa copenhagen |
| Name: | jAYNE-LYNN ROGERS |
| E-mail address - optional: | jlrogers@nbnet.nb.ca |
| Country: | Canada |
| Comments: | This is a verry well don and informitve web site.
keep up the good work. |
| Name: | kelly smith |
| E-mail address - optional: | scott@thirdhouse.com |
| Country: | usa |
| Comments: | Larry,
I just wanted to say that you are doing a great job!! A lot of times I feel out of place here, since I am not an ostomate, my child is. But you can't believe the help and great ideas I have gotten off this site for my son. It is great to hear how the adults feel, and deal with their ostomies,as I will soon have do help my son deal with all those feelings once he gets older. Thank you again for letting me be here, and for doing such a great job! Sincerely, Kelly Smith(mom to Cole, 29months cloacal exstrophy) |
| Name: | Stanley C. Skirvin |
| E-mail address - optional: | jasskirv@earthlink.net |
| Country: | USA |
| Comments: | After almost 17 years as a urostomate, I'm quite well settled in and seldom encounter anything to change or enhance my rerimen.
Having said that, I feel that you do great deal to better the lives of many ostomates. I feel admiration for what you do and wish you a good life. |
| Name: | Lynda Wilson |
| E-mail address - optional: | musicmaker6@yahoo.com |
| Country: | USA |
| Comments: | Dear Larry:
You are doing a fantastic job with the Evansville ostomy newsletter! I often check your site for information concerning any problem I have with my urostomy. Thanks for offering the newsletter to ostomates all over the country and not just in the Evansville, IN area. With appreciation, Lynda Fort Smith, AR |
| Name: | swarnaramesh |
| E-mail address - optional: | swarnaramesh@hotmail.com |
| Country: | India |
| Comments: | Dear Mr Larry Trapp,
When my mother Shankari Viswanathan had to undergo colosotomy due to CA Rectum and anal resection had to be done, we were lost for information. Though the team of oncologists and the ET nurse did explain in detail the surgery that mother had to undergo and the post surgical trauma support that she would need, the difficult phase was when she was discharged and brought home. We needed information on management of the colostomy,on a day to day basis, handling the emotional swings,the right appliance........and many more. WE browsed thro many sites desperately seeking information, and finally the Evansville chapter was able to answer most of our queries and we learnt much more. We knew there was a whole lot of such patients, much younger than mother, managing all their work as if they were normal. This was such a support to the family and we knew if we took good care of mom, she would regain her health. Thank you for all the help. uckily for us, mother was treated by an expert team of doctors and the surgery was successful. No chemotherapy or drugs. We thank god for the wonderful support that we have got and wish you good health and happiness. Best wishes Swarna Ramesh |
| Name: | Rio Light |
| E-mail address - optional: | riosmail@icqmail.com |
| Country: | Indiana, USA |
| Comments: | I am now 2 months into recovery after my surgery on March 18th. I have a permanent ileostomy and have adapted well to my new lifestyle. I don't miss using the bathroom up to 20 times a day!!! I am still learning the ostomy products, but have found some helpful items through talking with others with the same surgery. Ulcerative Colitis was killing me .... the ileostomy saved my life!
My heart sinks for those that struggle with the Jpouch. I did my research and knew without a doubt that I did not want to go for a procedure that would send me to the bathroom as much as UC did! I have had a few minor sores on my skin and I could not imagine this on my butt! I would strongly suggest anyone considering the Jpouch to research till they are blue in the face!!! This is a wonderful site .... bringing people together that would otherwise feel alone! |
| Name: | Betty Frederick |
| E-mail address - optional: | btfredrick@centurytel.net |
| Country: | USA |
| Comments: | Hi! First time on this site. Hope all are doing better. I had UC for 15 yrs. Had ileostomy in 1997, had j-pouch 4 yrs.,did not work very well. Bathroom visits were as many as before. Back to ileostomy in Dec. of 2001. Wish I had not waited so long. Doing very well. That was the right choice for me. Thanks for listening. Hope to hear from anyone. |
| Name: | Dennis |
| E-mail address - optional: | goodwinent@dfn.com |
| Country: | USA |
| Comments: | Nice to find this site .
I currently have an Ileostomy , but just from March of this year. I am scheduled for a Pull-through J pouch surgery in June , HOWEVER I have been reading and doing some research about this J Pouch and from what I have read , it is close to having UC all over again....(complications) seems it takes some time to get things settled , there is frequency, incontinence, butt burn and some other problems. Now in my snooping around I stumbled on to a site about BCIR surgery : www.bcirostomy.com .... Now this looks pretty good compared to the J Pouch problems. I say this because I have a small business that takes me outside and away from a toilet most of the time. And I have spent the past two years with UC(before the Ileostomy) diving off my backhoe and looking for a place to unload , at times.. didn't make it. It was not a fun two years . So I am thinking the J pouch is NOT the way to go. Too Frequent and possible incontinence. Not for me! I have been getting along with the appliance pretty well, (so far) have had some learning accidents, however I think I could handle those types of episodes much better than I could the J Pouch Problems . I know I am "NEW" at this , so if any of you that have had an Ileostomy for a while could advise me one way or the other about my thinking . I would love to hear from you soon. I am concideing staying with "The Bag" if the BCIR (or a kock pouch with the Barnett enhancements) is unavailable through the VA. Looking forward to hearing from someone about this. Thank you! |
| Name: | Sarah |
| E-mail address - optional: | littletink81@aol.com |
| Country: | uk |
| Comments: | Had bag since '97,only diagnosed in '96,but it was soo bad,and none of the drugs worked,that i had to have surgery quick.glad to find a site where so many others feel like i do and have the same experiences!! |
| Name: | Lawrence H. Conley |
| E-mail address - optional: | lvcon@digitalexp.com |
| Country: | USA |
| Comments: | I had a fall and to take pain pills, that gives you constipation,you have to drink a llot of water,and take exlax. When you are 84 it isn't so easy when you have a bag on your side. |
| Name: | Nikki |
| E-mail address - optional: | Laughinatya@hotmail.com |
| Country: | UK |
| Comments: | Hello everyone, hope your all ok, this site is like a breath of fresh air.
Im 24 yrs old and have an illeostomy since birth and a Urostomy since i was about 12. To be honest i feel very lucky because i havent really known anything other than my two bags. Any one out there in a similar position that wants a chat contact me. Thanks for having this site. Love n Luck to ya |
| Name: | Thomas Agnew |
| E-mail address - optional: | bilzibob@yahoo.co.uk |
| Country: | United Kingdom |
| Comments: | I am currently awaiting a urostomy operation due to having irrepairable nerve damage in my bladder. I think your newsletter is superb and will help all ostomy sufferers. Keep up the good work, look forward to receiving your next newsletter. Can anyone who has had a urostomy operation let me know what it involves and how long the recovery time is. |
| Name: | david |
| E-mail address - optional: | paparomeo12@aol.com |
| Country: | united kingdom |
| Comments: | i am age 61 i have had surgery 18 months ago for bladder cancer i would like to be contact with people in the same
postion |
| Name: | Nancy Ewing |
| E-mail address - optional: | nancyandkentewing@att.net |
| Country: | USA |
| Comments: | I had the take-down surgery to create a j-pouch in Feb.
At that time I also had complications after the surgery, so recovery has been slow. I am conerned that I take up to 8 lomotil per day and still have at least 15 bowel movements or more daily. Anyone else had this problem? My doctor says it will take four to six months for things to get better. Any suggestion for what to do in the meantime? |
| Name: | Sharon Staines |
| E-mail address - optional: | sharon@acwa.com.au |
| Country: | Australia |
| Comments: | hello I am checking your website for information for my sister in law who is nervous about having the urostomy |
| Name: | Mark Schaible |
| E-mail address - optional: | icuffu@earthlink.net |
| Country: | USA |
| Comments: | Great site, made alot friends so far. Thanks Larry.
Mark.... |
| Name: | Pawan Pratap Singh |
| E-mail address - optional: | pawantomar@yahoo.com |
| Country: | India |
| Comments: | Look forward to hearing from ileostomates world-wide !
Cheers and live life king-size .... !!!! Ciao. |
| Name: | sam |
| E-mail address - optional: | charlietiger@rhtc.net |
| Country: | south carolina, usa |
| Comments: | Hello;I've had a ileostomy since october 2001. I don't like it at all. It sticks out of my side two inches and is about one and a half inches round. It is so ugly. I don't know if I can deal with this. I have been reading about the bcir; Does anyone know of a hospitol that does this procedure in south carolina. Thank You . Sam. |
| Name: | Tina |
| E-mail address - optional: | maddog234@insightbb.com |
| Country: | USA |
| Comments: | I am looking for a chat room, to talk with others who have an ostomy. I am so frustrated right now....just need to vent and get some ideas |
| Name: | Evelyn Rivera |
| E-mail address - optional: | erivera@vnsny.org |
| Country: | USA |
| Comments: | I read the ostomy letter as a health professional |
| Name: | Roy G. Lewis |
| E-mail address - optional: | 3dman@grm.net |
| Country: | usa |
| Name: | Julie |
| E-mail address - optional: | julcbs@mi-mls.com |
| Country: | U.S.A. |
| Comments: | LOVE knowing I am not alone!
Thank you for all the information that is relayed in your Newsletters and chapter discussions. I have met two really good friends off the discussion chat rooms. I would love to talk with anyone who has Crohns and Multiple Sclerosis. I have a feeling I am not alone there either. Thank you julcbs@mi-mls |
| Name: | Cathy Bussi |
| E-mail address - optional: | catrit@worldonline.co.za |
| Country: | South Africa |
| Comments: | Thankyou so much for starting 'Ostomates Comparing Notes' - it is really good to link up with others like oneself. I only recently joined and have already had feedback from a young lady who is now facing the challenges that I faced 39 years ago. I think I have been able to help her - but am also really anjoying just being in touch with her and chatting about this and that. |
| Name: | Linda |
| E-mail address - optional: | lboehning@hotmail.co |
| Country: | USA |
| Comments: | I would like to thank you for offering the opportunity for us to share our stories with others. I received several e-mails and have made some new friends because of it. It helps to know we're not alone because we really need the support and information only people in the same situation can share with us. Please keep up the good work. |
| Name: | Annita Allen |
| E-mail address - optional: | annita@ivic.net |
| Country: | USA |
| Comments: | I have made many new friends through this website. I have been able to help many ostomates with my 28 years of experience. Everyone seems very happy with this website. Many are new ostomates looking for answers. Just as many are old pros, using their experience to help others. The nicest comment was 'I didn't know where to go for answers, my doctors were no help at all' and now I know I am not alone. |
| Name: | Betty Miller |
| E-mail address - optional: | Unicorn92664@aol.com |
| Country: | USA |
| Comments: | I am a Bladder Cancer survivor. I have a urostomy. I am 37 years old. I have a husband Ed, a daughter Krystle age 15 and a son Hunter age 14. I have had 2 hernia surgeries since my cancer surgery in November of 2000. My last hernia surgery was just done in March 2002. I still have trouble changing my urostomy, but I have a wonderful husband who is here for me everyday. I don't know what I would do without him. If anyone wishes to write my email address is here for you. Take care to all. |
| Name: | Suzanne |
| E-mail address - optional: | slocatgeo@aol.com |
| Country: | USA |
| Comments: | Have some very nice correspondence going, due to your site. Thanks very much. Appreciate your hard work. Very helpful. |
| Name: | C. DE ROSA |
| E-mail address - optional: | SOA0264@optonline.net |
| Country: | USA |
| Comments: | TO WHOM IT MAY CONCERN. I HAD CHECKED THE OSTOMATES MESSAGES, AND I THINK THIS IS A VERY GOOD IDEA. IT IS A WAY TO HELP OTHERS IN THE SAME SITUATIONS. SOME PLACES AND SOME OSTOMATES DO NOT BELONG TO SUPPORT GROUPS, SO WHERE ELSE WOULD THEY FIND HELP, BUT ON THIS SITE. THANKS |
| Name: | Harry Brand |
| E-mail address - optional: | salliesbrand@aol.com |
| Country: | USA |
| Comments: | I have had very possitive suggestion as a result of my posting. |
| Name: | Jeanette Watson |
| E-mail address - optional: | jett1@azonemail.net |
| Country: | USA |
| Comments: | I enjoy your Ostomy Web site ever so much. I receive great information, and have met good friends over the years. Thank you so much Larry for caring. I hold you in my prayers always. Thank you again. Jeanette |
| Name: | George Westerman |
| E-mail address - optional: | gww74@aol.com |
| Country: | USA |
| Comments: | Larry, What a creative and worthwhile site. I have gained more from your site then any other. Keep up the great work, you make our lives better. |
| Name: | r dean |
| E-mail address - optional: | handbikes@msn.com |
| Country: | usa |
| Comments: | very helpful,met others going through same situations |
| Name: | Danny van der Lingen |
| E-mail address - optional: | dannylingen@freemail.absa.co.za |
| Country: | South Africa |
| Comments: | What Can I say ?, I think everybody else has said it. |
| Name: | bob stephens |
| E-mail address - optional: | steptoe@cnl.com.au |
| Country: | australiaa very helpfulproduct, well worth while. Ihad 3 australia |
| Comments: | a very helpful and worthwhile product.I had 3 feedbacksin less than a week,one from london in less than 12 hours.however the disappointing thingwas, i have had no further contact,which i feel is a pity . |
| Name: | george |
| E-mail address - optional: | vardanyan22@hotmail.com |
| Country: | belgium |
| Comments: | Hi, it is wonderful that there are places where we ostomates can feel us as home.
Many thanks George |
| Name: | janice l. klenk |
| E-mail address - optional: | ladybugs@zoominternet.net |
| Country: | United States |
| Comments: | i find the site well informed they give a lot of help. |
| Name: | Ralph Holmes |
| E-mail address - optional: | ralphpat@xtra.co.nz |
| Country: | New Zealand |
| Comments: | A great site. Grateful thanks to other osto/ileomates that have contacted me. Looking forward to hearing from all of you - one at a time, that is!! |
| Name: | Johnny Hunter |
| E-mail address - optional: | johnnyh@main.com |
| Country: | USA |
| Name: | Jan Mossman |
| E-mail address - optional: | jedlmoss@hotmail.com |
| Country: | USA |
| Comments: | I have really enjoyed receiving email from fellow ostomates.
It has been a real blessing. |
| Name: | Joan Persch |
| E-mail address - optional: | carugama@aol.com |
| Country: | United States |
| Name: | Linda Bradford |
| E-mail address - optional: | lbradfor@bellsouth.net |
| Country: | USA |
| Comments: | Thank you so much for this great idea! I've made two new friends to have discussions with about our new lives! |
| Name: | Ross Benton |
| E-mail address - optional: | belleros@aol.com |
| Country: | U.S.A. |
| Comments: | Great idea. I have met several other people with Indiana pouch and are comparing notes.
Ross |
| Name: | MARIGENE BREWER |
| E-mail address - optional: | meb@socket.net |
| Country: | USA |
| Comments: | Have enjoyed hearing from other ostomates, and sharing information that might be helpful. Good to know we are not alone out here, and people are willing to share information/experiences. |
| Name: | Donna Nash |
| E-mail address - optional: | rednash56@hotmail.com |
| Country: | Canada |
| Comments: | this is a great site, many nights I have sat up reading about others like me. For so long I felt alone and due to you I now know differently. Keep up the wonderful work, and just knowing when I feel sorry for myself all I have to do is log on and read many of the stories from so many good people. Not only do I use it but tell others about this too.
Thanks for all. |
| Name: | Jayne-Lynn Rogers |
| E-mail address - optional: | jlrogers@nbnet.nb.ca |
| Country: | Canada |
| Comments: | Hellow to all,
I hope every one is well. Feel free to chat with me, I have a Illeostomy and would love to here from any one. It's nice to have some where to go and chat with others in the same boat. |
| Name: | Frank Keane |
| E-mail address - optional: | fkeaneka@cs.com |
| Country: | USA |
| Comments: | Got some good info on adhesions from 2 respondents. Had a computer glitch and couldn't respond to second person who described the sick feeling as more of a problem than the pain. My problem too, though sometimes the pain /discomfort really wears you down to the point of distraction. If your see this, would like to hear from you again or anyone else with similar problems.
|
| Name: | Jane Hultine |
| E-mail address - optional: | ironmke@globaldialog.com |
| Country: | USA |
| Name: | Richard Allen |
| E-mail address - optional: | rallen@solve.net |
| Country: | United States of America |
| Comments: | I think the idea of having a place to compare stories and gain ideas is an overdue idea and applaud your efforts. I was sent home with absolutely no information or idea of what I was in for and without the newsletter which I found by accident, it would have taken months of trial and error to learn what I learned from other ostomates stories and the information in the newsletter. Thanks |
| Name: | pedro paulo cunha pibheiro |
| E-mail address - optional: | celppcp@bol.com.br |
| Country: | brazil |
| Comments: | I´m very happy to know so many people with the same problem as mine, and so many strong friends. I hope god bless all of you.
best wishes pedro paulo cunha pinheiro |
| Name: | Ashley |
| E-mail address - optional: | nute2004@hotmail.com |
| Country: | United States |
| Comments: | I love this web-site it has helped me in so many ways! Feel free to e-mail me anytime.
thanks ashley |
| Name: | Cynthia L. Johnson |
| E-mail address - optional: | wezie1@earthlink.net |
| Country: | UOA |
| Comments: | I have been a member of this ostomy chapter for almost a year and I enjoy the articals and the note comparing all so the e-mail friends I have meet though here.Thanks cindy |
| Name: | jeanne |
| E-mail address - optional: | jeannem@udnet.net |
| Country: | Illinois---USA |
| Comments: | I have learned more from your monthly reports than I ever learned in the hospital. Thank you for the help.
|
| Name: | Norman Stimers |
| E-mail address - optional: | nbs@starband.net |
| Country: | USA |
| Name: | Marilynn Kennedy |
| E-mail address - optional: | kennedymarilynn@hotmail.com |
| Country: | Abbotsford, Canada |
| Comments: | Larry,
Thank you for all the work you did for the Ostomates Comparing Notes segment on your site. I personally have received some wonderful e-mails from fellow ostmates and I hope, by telling our respective personal stories, we give hope and encouragement to new ostomates who may be struggling with many aspects of their new ostomy. It is not always an easy road to walk but one can overcome alot knowing there are others who have been there, done that and still live busy and active normal lives. It is also nice to know questions can be answered just by sending a e-mail to someone who also has a specific type of surgery. Instead of "as near as your phone" we are as near as our computer! A JOB WELL DONE EVERYONE! |
| Name: | Barbara Casey |
| E-mail address - optional: | caseybarbara@hotmail.com |
| Country: | US |
| Comments: | I just realized how lucky I am! |
| Name: | Mary Monoky |
| E-mail address - optional: | Just4MM@aol.com |
| Country: | New Jersey --USA |
| Comments: | The comparing notes additional to this website has been wonderful. I have recieved many uplifting words of encouragement from fellow ostomates who have experineced similar problems.
I'd also like to say thank you to the online observers from various support groups like the 20/40 UOA group and retired ET nurses who have contacted me with advice and referrals. Comparing notes has helped me to share my experinces which has lead me to not only recieve support but to offer mine to others as well. Thank you so much for allowing me this oppourtunity to share . Mary Monoky |
| Name: | Jim Gilbert |
| E-mail address - optional: | james.gilbert2@btopenworld.com |
| Country: | Scotland |
| Comments: | i HAVE CHATTED TO MANY, MANY FELLOW OSTOMATES BOTH MALE AND FEMALE FROM AROUND THE GLOBE, USING MUCH MORE TIME ON THE KEYBOARD, ALL TO GOOD AVAIL, ANY OF YOU GUYS IN NYC and viewed the 10,000 Scots pipers, come over and visit us, we are good people and you shall be made most,most welcome.
see you all soon, Scotland is big enough and lovely enough to get to your heart Jim |
| Name: | Darin |
| E-mail address - optional: | djohn2001@prodigy.net |
| Country: | USA |
| Comments: | I have an ileostomy. Anyone may contact me any time.
Your Friend, Darin |
| Name: | Jutta |
| E-mail address - optional: | JutMic@aol.com |
| Country: | GERMANY |
| Comments: | Just to let you know how much you have helped me dealing with my colostomy by reading all the information , since there are no such sites available here.
Have my colostomy since 3 years, with lots and lots of problems, felt often left alone to deal with it and find out almost everything myself, the ultimate was to teach my ET nurse a few things (it was depressing). Thanks for keeping me half way sane :-) |
| Name: | FREIDA SCOTT (RN & PROP) |
| E-mail address - optional: | inarush@bigpond.com |
| Country: | AUSTRALIA |
| Comments: | HELLO LARRY,
FROM ALL OF US FROM DOWN UNDER. MANY THANKS FOR THE LOVELY EASTER GREETING & WE WISH YOU & ALL THE MEMBERS THE VERY SAME. WELL LARRY , WHAT CAN I SAY BUT THANKS YOU FOR THE HELP YOU HAVE GIVEN. YOU & THE OTHER MEMBERS HAVE NO IDEA JUST HOW MUCH HELP YOU ALL HAVE BEEN .....YOU HAVE GIVEN ME THE OPPERTUNITY TO HELP SO MANY OF MY PATIENTS WITH YOUR OWN PEARLS OF WISDOM WE VERY RARELY GET OUR PATIENTS TOLD WHAT ON EARTH TO EXPECT BUT THANKS TO YOU ALL I HAVE HAD THE OPPETUNITY TO PASS ON VITAL INFO TO THESE POOR SOULS WHO TRY SO HARD TO UNDERSTAND WHAT ON EARTH THEY ARE GOING THROUGH & WHY THEY GET FLOBBED OFF BY DOCTORS WHO JUST WONT DISCUSS THE AFTERMARTH OF HOW TO AND WHAT TO EXPECT. YOU HAVE GIVEN ME THE OPPERTUNITY TO HELP SO MANY PATIENTS COME TO TERMS WITH THEIR MEDICAL SITUATION & I GIVE THEM MY TIME FREE & BELEIVE ME I WORK HARD WITH LONG HOURS THEN I GO OUT TO THESE PEOPLE WHO ARE COMPLETELY CONFUSSED FRIGHTEND & THINK THEY ARE SOME KIND OF FREAKS THEY ARE NOT THEY ARE WONDERFUL AND ARE NOW MOVING AROUND FREELY WITHOUT FEELING LIKE THEY ARE STRANGE. I HAVE MADE MANY FRIENDS & BECOME CLOSER TO THESE PPL THAN YOU CAN IMAGINE (I ONLY WISHED MY OWN FATHER HAD THE INFO THAT I NOW HAVE IT WOULD HAVE MADE HIS FINALE WEEKS MUCH HAPPIER) I LOVE YOU ALL & WISH YOU ALL EVERY BLESSING FOR THE FUTURE. LOVE TO ALL & THANK YOU ALL A WONDERFUL SITE. LOVE FREIDA SCOTT (RN) AUSTRALIA |
| Name: | Rio Light |
| E-mail address - optional: | riosmail@icqmail.com |
| Country: | United States |
| Comments: | I recently had surgery on March 18, 2002. I battled Ulcerative Colitis for three years. My body was intolerant to any therapy and the variety of meds I took attacked me more than helped me. I am now weaning from the prednisone, which has slowed my healing process. 5 more weeks :) !!! UC took my life for three years ... but I won the battle and can't wait to heal 200% so that I can experience life with my children and husband! I went into surgery with no fear and have accepted my new life with open arms!!! I am proud to say I have a stoma and UC is no longer a part of my life!!! Praise God!!! |
| Name: | Bob Seigle |
| E-mail address - optional: | Bobee343@aol.com |
| Country: | USA |
| Comments: | Great Idea..............Ostomy 1990........ |
| Name: | Maryan |
| E-mail address - optional: | maeserenity@defnet.com |
| Country: | Ohio USA |
| Comments: | I really like this site. So many uplifing stories instead of poor me stories. Keep up the good works |
| Name: | jason |
| E-mail address - optional: | jaysonp2002@yahoo.com |
| Country: | usa |
| Comments: | i am a 28/m living in alabama with my ostomy that i have had for 25 years. if there is anybody who would like to chat with me feel free to write me and i will get back to you as soon as possible. take care everyone! |
| Name: | dr.awad |
| E-mail address - optional: | abawad99@hotmail.com |
| Country: | pal.n.authority |
| Comments: | dear friends
I am dr awad the pesident of palestinian ostomy association , improving the quality of life conditions of our astomates is one of our objectives I am looking for some information about surgical treatment for some serious complicatin especially post operative complication/inncountinance. if there is any surgeon can cantact with me please do not hesitat thank the U.O.A |
| Name: | Delores Pettit |
| E-mail address - optional: | dpettit1947@aol.com |
| Country: | USA California |
| Comments: | I have had a koch pouch for twenty years. and have had 13 revisions. not many people know what this is. I had ulcertive colitis for 7 years befor the surgery. I wished this site had been there then. this is a great site and I still learn new things. I am know 55 , so I been working at this for awhile. I love the support of this site. thanks Delores |
| Name: | Diane Hoefer |
| E-mail address - optional: | pauldiane46@yahoo.com |
| Country: | USA |
| Comments: | I enjoy every thing that you do. keep up the good work. |
| Name: | Donna Nash |
| E-mail address - optional: | rednash56@hotmail.com |
| Country: | Canada |
| Comments: | This is a great site, have really enjoyed reading about others , it helps me keep a perspective on life. It also has helped when I feel sad or depressed, knowing others understand and know what I am going through. I have a koch pouch since 1996, but since 1992 starting with cancer of cervix, bladder repairs,mesh, hernia's and ilea conduit, I finally found a great doctor that did my koch pouch and gave me my life back, as good as it's going to get. Have to have more surgery due to mesh imbedding into bladder and urethera & hernia again. After this I pray that is all, and just let me get on with life. So thanks for the great site, and keep up the good work. |
| Name: | Larry G. Mays |
| E-mail address - optional: | kb9nph@juno.com |
| Country: | USA |
| Comments: | Greetings and best wishs to all. A fine job on the web site. |
| Name: | Kathie Hilgenberg |
| E-mail address - optional: | kth@bytehead.com |
| Country: | USA |
| Comments: | I look forward every Sunday to the Newsletter that you email. I have had great support and have learned alot from reading it. There isn't a chapter or support group around Sheboygan, WI so when I had my ostomy surgery in 1997 I picked up as much as I could read to learn about my new life. It is sure a surprise on HOW many people are in the same boat you are and how they handle situations. After reading some of their stories I feel very lucky. Many have had it worse than me. I thank my lucky stars to be where I am today.............and thank you for your wonderful newsletter. Keep up the good work and God Bless :-) |
| Name: | Harvey Lozner |
| E-mail address - optional: | xeroxharv@aol.com |
| Country: | USA |
| Comments: | 58 year old male. Have ileostomy since 1964. |
| Name: | Mary M. Fancil |
| E-mail address - optional: | mmfancil@core.com |
| Country: | United States of America |
| Comments: | I am caregiver for my 91 year old ileostomate father. He lives in his own home and fixes his own meals and does his laundry, etc. He takes everything in stride. Our biggest problem is leakage. He seems to have a bulge under his stoma, causing improper fit of the appliance. But we're working on it. I cannot thank you enough for the newsletters and the support. It has given me so much strength and knowledge in caring for him. I'm so glad that Shaz let me know that you were out there and could help with all of your hints and tips and wonderful articles. THANK YOU SO MUCH FOR BEING THERE!!!!! |
| Name: | cheryl m specht |
| E-mail address - optional: | daspecht@cox-internet.com |
| Country: | usa |
| Comments: | living in northwest louisiana I would love to hear from anyone in this area...could you help?... the comments page is wonderful.. |
| Name: | george |
| E-mail address - optional: | vardanyan22@hotmail.com |
| Country: | Belgium |
| Comments: | Thanks for your work, Larry. Feel free to visit my inbox and my website:
http://go.to/vardanyan http://www16.brinkster.com/vardanyan22 Best regards George |
| Name: | Nancy Oleksy |
| E-mail address - optional: | Nancy.Oleksy@abnamro.com |
| Country: | USA |
| Name: | Clark Littell |
| E-mail address - optional: | galer@pld.com |
| Country: | U S |
| Comments: | I really enjoy your news letter and the ostomates comparing notes is very helpful.We can all learn from each other.
thanks Clark |
| Name: | Christina |
| E-mail address - optional: | hopnalong@adelphia.net |
| Country: | United States |
| Comments: | I was diagnosed with UC in August and was not responding to oral medications or IV steroids. I had the Ileostomy done in January, but developed a fistula in my small intestine. I was in the hospital for a total of three months and still am recovering. The fistula is still draining and if it doesn't stop, I need surgery again to fix it. Which will be my 4th since the Ileostomy (I had two surgeries to put in drainage tubes in my lower abdomen to drain the fistula). I haven't really had a chance to live life with just my stoma. I am hoping to hear from others. I have a wonderful family and fiance who have supported me through all this, but they really can't relate. I am getting married in June and hope to be healed. If anyone has any suggestions on how I should empty my bag during my wedding please email me. |
| Name: | Rachel |
| E-mail address - optional: | gutlessinak@gci.net |
| Country: | USA |
| Comments: | Ileostomy for 12 years. Going into law enforcement. Need to know if future testing will be an issue, making all my accomplishments towards this profession futile. Anyone with info, would be appreciated. |
| Name: | Cynthia Pyle |
| E-mail address - optional: | cynthiapyle@hotmail.com |
| Country: | Good ole' US of A |
| Comments: | I am unlike most ostomates in that I chose my ostomy which was due to somplications from a birth defect, imporforate anus. Most others have a serious disease process which forces them to have the procedure done, in a life or death situation. I. on the other hand, could not deal with the embarrassment of incontinence any longer and sought a better quality of life without the support of family and friends. I was told by my father not to have this done as it would cause me much pain and rejection. I could not have made a better decision. It was worth all the rejection and no physical pain besides. I dealt with the incontinence throughout my whole life and finally decided, after much research, doctor visits, medicines, and diet control, to go ahead with the procedure in Jan. of 1997 and I haven't looked back since. I can now go anywhere without the fear of there not being a restroom close by or having an accident. I feel rather alone in my situation but I know there are others out there and I would love to hear from any of you. Keep up the sharing and lifting up! All you new ostomates out there...hang in there, it does get better!! |
| Name: | Jim Brennan |
| E-mail address - optional: | sligojim@erols.com |
| Country: | USA |
| Comments: | Webmaster,
Your URL is tops! I like your format(s) and material. This is a distinct service to all Ostomates who do not haave the Medical Advice and assistance you have garnered on this site. Don't change a thing you do. I especially like the format you use for researching information in your prior and current newsletters. Your get a ***** + rating from me. JimBrennan Ileostomate circa 1981, revision 1996. |
| Name: | Wesley MacLeod |
| E-mail address - optional: | wes.macleod@ns.sympatico.ca |
| Country: | Canada |
| Comments: | Hi This should be an interesting situation. Talking to others with similar health problems opens up a great converation channel.Thank you |
| Name: | Elaine Eure Henderson |
| E-mail address - optional: | jelaine22001@yahoo.com |
| Country: | USA |
| Comments: | I was snake bit in Costa Rica, and had an emergency operation to save my life--it's been ten years now. |
| Name: | Debbie Harris |
| E-mail address - optional: | Debbie_Harris@kphd.org |
| Country: | USA |
| Comments: | Wound and Ostomy Nurse |
| Name: | Peggy Wenlund |
| E-mail address - optional: | alpeg3@bellsouth.net |
| Country: | usa |
| Comments: |
I had an ileostomy May 5, 2001. Even though I know this surgery saved my life, it has still been hard for me to accept. I have a loving husband who has been by my side in more ways than one, through several bouts of pneumonia, etc. for which I am so thankful. God has been good to me. I thought I would have accepted this quite a while ago and I am sure I will. Like all Ostomates, I have my good and bad days. I appreciate you letting me vent somewhat. Peggy Wenlund |
| Name: | Alexes A Hourigan |
| E-mail address - optional: | alexes@antelecom.net |
| Country: | Los Angeles |
| Comments: | Hope your health hold up for you. You do a teriffic job and produce a wonderful job. |
| Name: | J. Savage |
| E-mail address - optional: | Blaize7777@webtv.net |
| Country: | U.S. |
| Comments: | I am to have a "ostomy reversal" surgery soon. I am a bit scared because it's already been postponed twice. The last time was a couple of weeks ago. I was to drink 1 cup every 10 minutes of a mixture caled "Colyte", and take high doses of antibiotics the evening before the surgery. I kept vomiting. I finally went to the ER. They told me I should be admitted the day before the surgery so they could help me with the vomiting. Also my blood pressure droped to 98/47. I passed out in the ER. I am also scared because he tld me I may have a tube down my nose or throat for the first 48 hours. Last Aug.3 when my colon and appendix both ruptured I neary died I was in ICU on life support systems for 2 weeks and unconsciencely pulled out tubes, etc... and they tied my hands and feet down. I don't want to wake up in the recovery room and unconsciencely pull tubes out again.If anyone out there has gone through a "reversal" surgery could give me any info I would be grateful. Thanks for the newsletters and for not leaving me alone. I hope I wrote this in the right place. Thank you! |
| Name: | Cindy Johnson |
| E-mail address - optional: | wezie@earthlink.net |
| Country: | USA |
| Name: | Jacqueline Fowler |
| E-mail address - optional: | jqfowlerfowler@earthlink.net |
| Country: | USA |
| Comments: | Ostomates comparing notes is a wonderful idea, it gives others a chance to read about others who are much like themselves, at least for me that this much is true. I enjoy going back to read up on others who have left little notes about themselves. It also gives fellow Ostomates a chance to see some helpful tips or idea's about how to deal with their appliances or some advice about where to go and find better prices or Insurance for their appliances, over all, I admmire you for coming up with such a wonderful idea. |
| Name: | Susan |
| E-mail address - optional: | smacdonald007@ns.sympatico.ca |
| Country: | Canada |
| Comments: | hi everyone.
i'm 41 years old and have had a urostoy for just about 5 yars now. let me tell you life is so much better WIT than WITJOUT!! i suffered for years from a neurogenic bladder due to a terrible fall as a child. as i got older the condition got worse and my urologist found a cell change from all the infections i had and told me i wouldnt last 5 years without the surgery. well having 2 teenagers to raise there was no option for me other than to have the surgery. Thank heavens i did!! ..life is wonderful.. i am happy and healthy and have very little problems with my ostomy. I also suffer from IBD and sometimes find that a little difficult to manage, but other than that everything is working like a clock. Life is GOOD...and we try not to complain too much because the alternative to the surgery is unspeakable. I have a man that loves me unconditionally and two wonderful children . Something like wearing a pouch on my belly is really something trivial compared to the pains other people suffer through everyday. SMILE life is great and we have all been given a second chance at it! take care everyone Susan |
| Name: | doreen spencley |
| E-mail address - optional: | comrebel@hotmail.com |
| Country: | canada |
| Comments: | i have had my ostomy since 1993. for the fist 2 or 3 years i had a lot of problems with leakage.
i saw a different ostomy nurse who explained that i ghad been using the wrong supplies. i have an ileostomy and was using the ones for use with a colostomy. since i have changed sopplues i have had no problem thank goodness. hope all my ostomates have a very happy st.patricks day |
| Name: | SANDRA EDWARDS |
| E-mail address - optional: | ge25se@pacbell.net |
| Country: | USA |
| Comments: | I am in the process of choosing a ostomy chapter. Found your web site first and through it the local chapters in my area. Thanks |
| Name: | Cathy Barnes |
| E-mail address - optional: | cbarnes@nc.rr.com |
| Country: | USA |
| Comments: | My name is Cathy Barnes and I live in North Carolina, USA. I had a colostomy for 4 months and then an incomplete takedown resulting in a 'temporary' iliostomy for another 6 weeks. I was on sick leave for seven months. I no longer have any ostomies. I continue to have blockages-I have been hospitalized twice for blockages. I now know what to do if I fee a blockage coming...take phenerghan, drink a glass or prune juice, lay down with a hot pad on my belly.
I has taken as long as 4 days to pass gas or stool and I was soooo miserable. |
| Name: | Lee Collins |
| E-mail address - optional: | LeeTan@email.msn.com |
| Country: | USA |
| Comments: | Hi Larry,
Good Job! Just wanted you to know I think you are doing a great job on both your web site and the msg pages. I just browsed through them and they are all very informative and it looks like people are really enjoying them and getting some good info from them. Lee Collins, former Editor Grand Rapids Michigan Newsletter the 'Promoter'.... Thanks for all you are doing, keep up the good work, |
| Name: | frank callow |
| E-mail address - optional: | callowf@shaw.ca |
| Country: | canada |
| Comments: | I have had a colostomy sice 1984. It was for colon cancer.
I have had little trouble but did have my correction done in 1989 but no trouble since. my biggest complaint is a large stome hernie butas they do not want to correct I will have to live with it. Iam 75 years old. my biggest problem is my diabetes but does not bother my colostomy. |
| Name: | Emalee Manning |
| E-mail address - optional: | emand02@msn.com |
| Country: | USA |
| Comments: | Hello, My name is Emalee and I am a two bagger.. Do to colorectal cancer three years July 26 I was left with a colostomy and urostomy. The best thing I ever did in my life considering the alternative. Belive me It was an ajustment. At the age of now 61 I was ready to settle down and become a old grandmother, that changed everything. I realy has made me fill younger, I had to get up off my butt and make up my mind that I was not letting this total change in my life and boby get the best of me,and belive me it has not. I have done mor traveling than ever in my life, even Europe,so let me tell you that life can and will go own after ostomy. |
| Name: | Jim Gilbert |
| E-mail address - optional: | james.gilbert2@btopenworld.com |
| Country: | Scotland |
| Comments: | Larry does a fantastic job with the website, I have now a number of international friends thru the comparing notes website, one thing for sure, we in the UK are very fortunate being supplied free of charge for all our medical requirements, I have a friend in Mexico who pays out a large sum of cash for supplies required by his Mum, is there any person/s who know of a charitable source for suppling pouches for colosomates, give me a call and I shall pass along the info.
Happy StPatricks day to all, it is my 66 year bithday and having a ball, bye for now, Jim |
| Name: | Shirley Evans |
| E-mail address - optional: | bwc1943@aol.com |
| Country: | USA |
| Comments: | Hi Everone,
This is the most wonderful sight you can find for we who have OSTOMY's. In fact it is the only sight I could find. I always print out the news letter to read, and keep them in a file. I have noticed people from all over the US and abroad that have gotten on this sight. I have also gained a few lady friends due to this sight. We all need a friend, and one who is sharing your problem is really a comfort. People can say they understand, but they really don't. I am so greatful to this Ostomy Chapter, deserve a standing ovation!!! Very Sincerely, Shirley Evans |
| Name: | Betty Stebbins |
| E-mail address - optional: | Bls3656@webtv.net |
| Country: | U.S.A. |
| Comments: | I wrote here in Sept.2001.Finally I called Convotec Co. I asked to talk to an ET Nurse explained the problem, she gave me a name. This ET Nurse lives 30 miles from us.What an Angel my husband became allergic to the adhesive on the wafer.It took about 2 months. Shirley connected us with COOK from Indiana they make non-adhesive appliance systems. That means no more bleeding, the skin is healed.It is 3 pieces a silicone O-ring seal a pouch hooks onto that. Then a belt is what holds in place. It works GREAT!! |
| Name: | Wendy Barrie |
| E-mail address - optional: | barriews@hotmail.com |
| Country: | Australia |
| Comments: | It is great connecting with others in similar situations. I have had an ileostomy for 3 years, after bowel cancer. My 2 Grandson's make me so pleased to be around still, everytime I see their smiling eyes, they are only 1yr & 4yrs. 40yrs you have nearly been around as long as me. Love to hear from others. Bye for now....Wendy... |
| Name: | Frank DeDoming |
| E-mail address - optional: | frankde@frsb.net |
| Country: | USA |
| Name: | Robin Jordan |
| E-mail address - optional: | Kasharas@aol.com |
| Country: | USA |
| Comments: | I am grateful to have found this dreampage. I am 43. Due to a serious car accident in Jan.1999 I woke up with a colostomy. Thank God for technology today and life itself!
Would like to e-mail with other colostomates who can relate. Thank you for a very informative site. Keep up the good works! |
| Name: | Jan Johnson |
| E-mail address - optional: | j5_johnson@yahoo.com |
| Country: | USA |
| Comments: | I have a urostomy.I am having problems cleaning my bags between changes. The sticky substance is impossible to get rid of. I wquld appreciate any advice.
Thanks Jan Johnson |
| Name: | Mary Monoky |
| E-mail address - optional: | Just4mm@aol.com |
| Country: | USA |
| Comments: | My last ostomy surgery was 13 weeks ago ( November , 2001), I was hospitalized for more than 10 weeks for leaking problems. My surgeon reluctantly agreed to attempt superficial corrections after 90 days. But when I reached 90 days ( of my own personal hell) he backed off. I believe the leaking is a combination of dumping syndrome /short gut along with the bad location.
I've had numerous intestinal surgeries at a major teaching hospital in both Philadelphia and New York City but they always end up the same...me LEAKING!! I'm really at my wits end, I've exhausted all the suggestions of several ET nurses, I've consulted with surgeons from major teaching hospitals and no one has been able to help me. Currently I'm on IV hydration at home which is a double edged sword, great to not be in the hospital but the risk of infection from a central line and a stoma is constant. I've had 13 bouts of sepsis in the last 5 years. I would like to talk to anyone who can offer suggestions or coping tips that may help me during the really bad days. |
| Name: | Mary Israel |
| E-mail address - optional: | maryaji@hotmail.com |
| Country: | USA |
| Comments: | I was informed yesterday after a clonoscopy that I need an ilestomy within the next few weeks. I'm not even well enough
to have the procedure yet, have to take big doses of steroids first ( I have done this for over a year and nothing works ). I do not know anything about this surgery and am devastated. Any info appreciated. Thank you. |
| Name: | Evelyn Hollifield |
| E-mail address - optional: | prissie19@yahoo.com |
| Country: | USA |
| Comments: | I have very recently had a total colostomy. Trying to learn to deal with it. |
| Name: | Clare Morrissey |
| E-mail address - optional: | CMorrissey@bloomhealth.org |
| Country: | USA |
| Comments: | Larry: I am a WOCN nurse in Bloomington. IN and I think you have a wonderful, informative newsletter. The most awesome part is that it is accessable to all esp. with the declining support groups. I would like to thank you for your time, energy and committment! |
| Name: | Janet Jacobson |
| E-mail address - optional: | janetjake@fastdial.net |
| Country: | USA |
| Comments: | I had a urostomy about two years agao. For the most part I do well. I do have some problems with skin irritations. I go to the support groups in my area when I can. I like receiving your newsletter and E-Mails. I think you do a great job of keeping ostomates informed so that they do feel so isolated or alone. |
| Name: | Carrie Shore |
| E-mail address - optional: | carrie.shore@target.com |
| Country: | USA |
| Comments: | I got my ileostomy in 1999 after living with Crohn's for 5 years. Overall, my ostomy has been wonderful! -- my quality of life has improved greatly! In 2001 I had to have my stoma relocated -- due to abcesses that formed near the site. I've recovered from that surgery, too. I don't want to think about having more surgeries -- two is enough. I'm involved as a visitor with my local ostomy society, and that helps me a lot to have friends in the same situation. I enjoy this newsletter -- it helps keep my attitude on the right track. Keep up the great work! |
| Name: | Jean Gerbino |
| E-mail address - optional: | rmgerbino@comcast.net |
| Country: | USA |
| Comments: | Thank you for all the hints and tips that you send out each month! I've come to depend on your website to help me out when I need an answer to a problem w/my appliance or stoma, etc. Thank you for your dedication to helping ostomates improve their quality of life. |
| Name: | Darrell Mullins |
| E-mail address - optional: | nanamullin@aol.com |
| Country: | USA |
| Comments: | I have already signed the dream book once but I will do it again. I think your Evansville, Indiana Ostomy Chapter email newsletter is fantastic. Please keep it up. Darrell Mullins |
| Name: | Judy Johnson |
| E-mail address - optional: | judy@kcnet.com |
| Country: | USA |
| Comments: | Thanks, LTrapp, Is this new? I always check out your weekly messages. Love them. Lately, I have received some mail from other ladies my age (64) who are living with ileostomies. It is good to have the "company". more later. Judy |
| Name: | Karen Tse |
| E-mail address - optional: | kt@netvigator.com |
| Country: | Hong Kong |
| Comments: | I got lots of useful information from this website. Now I am more confident in managing my stoma and resuming a normal life. From reading your Dreambook, I got strength from those courageous people who positively accept what others see as misfortune and still live happily. What touch me more is that people who live thousands of miles away and never met before care for each others. Larry, thank you very much, from the bottom of my heart. |
| Name: | Mrs Margaret J. Bishop |
| E-mail address - optional: | m.j.bishop@dundee.ac.uk |
| Country: | Scotland, U.K. |
| Comments: | I have been a sufferer of ulcerative colitis for the past 15 years and have avoided surgery at all costs. However, I have now reached the stage in my life where I can hardly sleep at night for continual pressure to relieve my symptoms, have to watch my diet very carefully and eat foods with strong flavours, wheat, vegetables, alcohol, meals like curries, chinese, etc. I can't eat fresh fruit, drink fresh orange juice and think milk probably is not too good either. Can you suggest to me anything more interesting that I could eat that would not harm me and prevent me from having to have an operation which has been offered me on numerous occasions to "improve my lifestyle". I unfortunately have a complete fear of having a bag stuck to the front of me (my father died of bowel cancer when I was 15 and I remember to this day him wearing his bag and it has left an indelable impression on me). The drugs I take are Prednisilone, Asacol (which are totally useless as they pass straight through me),Azathioprine and Co-proxamol pain killers. I have tried other more modern drugs like Balsalazide !! but these actually made my symptoms worse. Is there anyone in your group who could advise me how to improve my life either by alternative medicines or diet etc. Your web page is very informative and helpful. Thanks alot. |
| Name: | Tim Mitchell |
| E-mail address - optional: | tim6255@yahoo.com |
| Country: | USA |
| Comments: | Thanks for your wonderful newsletter. Since receiving my ileostomy, your newsletter has given me encouragement, helpful hints and much needed education on living with an ileostomy. Thank you for your support. Sincerely, Tim Mitchell |
| Name: | jeff |
| E-mail address - optional: | finstodlef@aol.com |
| Country: | USA |
| Comments: | Larry; I'm doing fine. Having a colostomy and suprapubic cystostomy is the best thing I ever did to improve my daily life. I would like very much to help and encourage others who face chronic incontinance. It is a bit of a challenge to learn how to deal with all these changes, but it can be done. I recently was reflecting on the fact that I thought of toileting in almost 1 year. Jeff |
| Name: | Sheelah Zapf |
| E-mail address - optional: | sheelah@telusplanet.net |
| Country: | Edmonton, Alberta, Canada |
| Comments: | Your newsletter is great. Please inform your readers in Canada we have many Ostomy Association through out Canada our head office is in Toronto. At one time we were under the umberala of UOA US We are know as United Ostomy Association of Canada Inv. I have had a urostomy for 49 years it was the first one the Mayo Clinic did. I was 14 at the time. I am still doing great. I must say I am a very active person. Some of our American friends may remember me I was on the Board of U.OA. U.S. and then when Canada separated I became the First President of UOA Canada. If any Canadians would like more information about UOA Canada please feel free to e-mail me. Evansville you do a great job keep it up. From your Canadian Friend |
| Name: | Alice Saben |
| E-mail address - optional: | wisconsinalice@hotmail.com |
| Country: | USA |
| Comments: | I have printed up all the copies of the newsletter listed at your site. I've learned more there than from PROFESSIONALS. Keep up the good work & thanks. I'm 52, colostomy (that acts like an ileostomy) due to CD, date of surgery 9/30/98. Also have short gut syndrome. I still have problems with heavy output. Have tried things ranging from marshmallows to loperamide (imodium) to opium, with no help. Alice |
| Name: | Lynda M. Beyko |
| E-mail address - optional: | lbeyko@yahoo.ca |
| Country: | Canada |
| Comments: | Your newsletters have been very important to me. I have learned alot and have had many questions answered for me even before I thought of the question. Thank you for all your hard work on our behalf. |
| Name: | Bob Doyle |
| E-mail address - optional: | bobby279d@msn.com |
| Country: | USA |