Welcome to Dreambook, a nifty new free service from:
New Dream Network, Dreamhost, and Dreamservers!If you have a minute, please sign my Dreambook too!
| Name: | nadine archbold |
| E-mail address: | ngarchbold@gmail.com |
| Country?: | usa |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | ilestomy |
| Comments: | just looking fo supportr |
| Name: | Julie Walker |
| E-mail address: | bluejewels73@yahoo.com.au |
| Country?: | Australia |
| Type Of Surgery : | ileostomy |
| Comments: | I had emergency surgery a week ago and am now seeking what available resourses are out there. Yours was one of the first I found :) |
| Name: | Ms. Jesica Irving |
| E-mail address: | jessie90802@yahoo.com |
| Country?: | usa |
| Type Of Surgery : | colostomy |
| Name: | tina m alderman |
| E-mail address: | tinalderman@gmail.com |
| Homepage URL: | http://nocolonandstillrollin.blogspot.com |
| Country?: | United States |
| Type Of IBD: | UC |
| Type Of Surgery : | j pouch |
| Comments: | 11 yo girl with jpouch surgery five days ago. Now with ileostomy and reversal to happen in a couple of months. Thanks for having this page! |
| Name: | Angie |
| E-mail address: | angiedial@ymail.com |
| Homepage URL: | http://yahoo.com |
| Country?: | united states |
| Type Of IBD: | chronic adhesions, bowel resection removal of sigmoid in 2000, now 3 weeks ago complete colectomy with ileostomy, hopefully reverse in 1 year, in the learning period, also have hypogammaglobulinemia, MS, hydronepherosis, coma 2006 DOA, Im a hot mess , need to be on mystery diagnosis's, just thank God Im ALIVE, & LIVING.......;) |
| Type Of Surgery : | open colectomy, ileostomy same scar as yours, havent named my lil stoma yet,.....thinkin of "princess" or " noisey princess" lol |
| Comments: | rann across your site lookin for a product to @ times when ileostomy gets pasty, to make it a lil easier to empty, im a newbie, 3 weeks post op, been up n down with things not sticking, leaking after losing lots of weight, got samples from about 9 companies, so far hollister new image 2 peice i like lots, have 1 peice's, im gonna try next, got some in that feel extremly comfy, i like the velcro, this has a pretty sturdy barette , not the cheapy looking ones,.....company is NU-HOPE,.........your page made me smile, & laugh, thanks i needed that........
Angie from Houston, Texas |
| Name: | Lee Dillon |
| E-mail address: | elceedee@comcast.net |
| Country?: | USA |
| Type Of IBD: | Cancer |
| Type Of Surgery : | Colostomy |
| Comments: | Hi Shaz, I was a member of your page many years ago. I found your page this A.M. and thought I would get back in touch. Back then there was a man from Amsterdam by the name of, Micah, I think. His SO wrote that he had passed away. I was so saddened by that, I quit coming to your page. Well, I am back! I'll come here off and on and thank you for keeping your page going all this time! |
| Name: | Joseph |
| E-mail address: | joseph@comcast.net |
| Homepage URL: | http://verhel.pluto.ro/lansoprazole/sporanox.html |
| Comments: | Our partners : <a rel="dofollow" href="http://ortal.mypressonline.com/azithromycin/azithromycin-infant.html">azithromycin infant</a> is about azithromycin infant... <a rel="dofollow" href="http://durnes.00author.com/accutane/accutane-ibs.html">accutane ibs</a> is about accutane ibs... I have been looking for sites like this for a long time. Thank you! Visit our site and have fun! |
| Name: | Tatyana |
| E-mail address: | tatyana.mail@list.ru |
| Homepage URL: | http://www.blog.servitutis.ru |
| Country?: | Russia |
| Comments: | You are an inspiration and I wish you well.
Warmest regards.Sincerely Tatiana, Saint-Petersburg. |
| Name: | jscousens@yahoo.com |
| E-mail address: | jscousens@yahoo.com |
| Country?: | Canada |
| Type Of IBD: | Ileostomy |
| Comments: | I had diverticulitis and had 20 cm removed .temporary ileostomy since feb 2 . Hoping for reversal. |
| Name: | Fred Roberts |
| E-mail address: | kokopelli@fastq.com |
| Country?: | USA/Central Arizona |
| Type Of IBD: | Ulcerative colitis |
| Type Of Surgery : | Total colectomy |
| Comments: | 3/8/11 - Laparoscopic colectomy
3/18/11 - Surgical incision colectomy due to complications 28-day stay at Banner Good Samaritan Medical Center, Phoenix AZ Physician - Dr. Eugene Kim |
| Name: | Pende |
| E-mail address: | berta44@live.com.pt |
| Homepage URL: | http://live.com |
| Country?: | botswana |
| Comments: | am 39yr old woman who never had a child before,am asking if it´s possible to get help.i have a fibromioma 8*7cm intramural posterio of the utrerus.and my both tubo are not functioning well because of the pressure from fibroids.please help i need to have a child: |
| Name: | Wendywoo74 |
| E-mail address: | wgwoodford@hotmail.com |
| Country?: | Australia |
| Type Of IBD: | Crohn's Disease |
| Type Of Surgery : | Ileostomy |
| Comments: | WOW!!! I am so glad I found this site. I am in NSW and from time to time have some questions i need answered but I also like to chat to other Ostomates. Thank You Shaz for the site |
| Name: | Patricia Marie Lewallen |
| E-mail address: | ms_redd84@yahoo.com |
| Country?: | United States |
| Type Of IBD: | Familiar Polyposis |
| Type Of Surgery : | J pouch, looped ileostomy followed by other surgeries which turned into a total rectal removal and anus which is non-reversable |
| Comments: | Hi Shaz. My name is Marie i am srry if i didnt put the stuff in the rite areas. i have been through so many surgeries since May 01, 2008. i have three amazing kidz (2 daugthers and 1 son) ages 4, 5, and 9. I love your site. By me reading the comments that r posted by others i have gain some answers to questions that my family and friends try to answer. im lost for words cuz i have nerve posted anything about my ileostomy. Due to my ileostomy i have had to have it done twice within the same year, due to the fact of my stomy wasnt put out far enough, which caused me to have some of my orgins removed (which my husband had to say yes to). He stil tells me srry almost everyday. I always tell him that he had no choice cuz if he didnt i wouldnt died within months due to infection. I feel now that i have found your site i can try to get answers to my questions and find courage to talk about it more. |
| Name: | Lakshmy Subrahmanian |
| E-mail address: | radottcr@gmail.com |
| Country?: | India |
| Type Of Surgery : | Ileostomy |
| Comments: | Hi,
I am writing this for my mum who had an ileostomy in 1973.(She had ulcerative colitis). She is 91 yrs now and has been using bags till today.She worked as a teacher in English Literature in the University for 31 years. Now retired and enjoying her rest.May be she is the oldest person in India who had this surgery-I dont know.I would like to get help on her equipment/bags/flanges - the works. By the way I work in the merchant navy as a Chief Engineer and I love your attitude. Luv V.S.Ranganathan,Trichur. India |
| Name: | John Simmonds |
| E-mail address: | jsmpsimmonds@gmail.com |
| Country?: | Australia |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Total Colectomy |
| Comments: | Hi Shaz and readers, I visited this page years ago and now it is even better. I am a patient of many surgeries. I have had 3 Ileostomies and 2 J pouches and I am still in trouble, I just cannot help feeling dark from time to time but reading about all of you really helps to feel totaly not alone. I currently have a J pouch which could fail again, I have it dilated weekly as it has strictured and kinked over at an acute angle. I will probably end up back with the Ileostomy but at least I will have a life. I will view this page from time to time. Good luck to you all. |
| Name: | Tonya Gardner |
| E-mail address: | kaiser0612@yahoo.com |
| Country?: | USA |
| Type Of Surgery : | Bowel Resection, Rectal Resection, Cecum Resection |
| Comments: | Way to go, staying positive. I just had my ileostomy reversed 1 week ago because I couldn't live with, what I thought was the dirtiest, smelliest, most invasive thing that had ever happened to me. I was to the point that I was on the verge of needing therapy. I was living on anti-anxiety meds. One week later, I feel miserable. The diarrhea is constant, the gas is unbearably painful, and my butt is so sore that I cannot even wipe it. And I waited so long to wipe my a... Am I better off? I cannot honestly answer that question, but I do know that I am not positive, I am tired.
|
| Name: | Marie Taylor |
| E-mail address: | marie_lana@hotmail.com |
| Country?: | Australia |
| Comments: | Hi Shaz, just a quick note to say I love your website - and thanks for sharing your story in such a refreshing and honest way. Cheers and take care, Marie xx |
| Name: | Chloe Moody |
| E-mail address: | cmoody31685@yahoo.com |
| Country?: | america |
| Type Of Surgery : | colostomy |
| Comments: | i love this site! even though i'm only twelve. |
| Name: | Beth |
| E-mail address: | fbs810@gmail.com |
| Country?: | USA/Wisconsin |
| Type Of IBD: | PSC/Liver Tr/Colon Cancer |
| Type Of Surgery : | Ileostomy |
| Comments: | Had a Shunt place on my first transplanted Liver because the Primary sclerosing cholangitis has distroyed the first liver I recieved 7 years ago. Now waiting for 2nd liver, however now I am 61, had the cancer 3 years ago and there are lots of first time people waiting that deserve a chance. So we will see. Thanks for having this forum. And you are absolutely right, Attitude is everything. |
| Name: | Marcia |
| E-mail address: | Mome422@yahoo.com |
| Country?: | Usa |
| Type Of IBD: | Chrons, uc |
| Type Of Surgery : | Ileostomy |
| Comments: | Am interested in learning more about skincare around stoma also outer skin around wafer |
| Name: | Brenda Rueckert |
| E-mail address: | brenda.rueckert@milaca.k12.mn.us |
| Country?: | USA |
| Type Of IBD: | UC/Crohn's |
| Type Of Surgery : | colectomy |
| Comments: | Thanks for sharing. I do have a couple of questions. What type of bag do you use? How do you get rid of granulomas? |
| Name: | Doody |
| E-mail address: | tonlyn65@yahoo.com.au |
| Country?: | Australia |
| Type Of IBD: | Crohn's |
| Type Of Surgery : | Ileostomy |
| Comments: | Enjoyed the visit Shaz nice website keep up the good work of enpowering us ostomates... |
| Name: | shirley |
| E-mail address: | waif@vodafone.co.nz |
| Country?: | new zealand |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | ileostomy |
| Comments: | had my surgery on August 11 this year,have had a positive attitude since the op...no more looking for the nearest toilet basically i have my life back, due to have J-pouch surgery early next year but not sure what to do....can anybody tell me if you still have the urgency of needing the toilet as in Colitis. |
| Name: | Laura |
| E-mail address: | Pjh22@comcast.net |
| Country?: | America |
| Type Of IBD: | Uc |
| Type Of Surgery : | Ileostomy |
| Comments: | I have a great surgeon in Boston.I had my colin taken. 1Wednesday october19 2011.I am8 years old and suffered for almoist 2 years. I am leaving the hospital today.I feel bad for people who suffer. |
| Name: | Laura |
| E-mail address: | Pjh22@comcast.net |
| Country?: | America |
| Type Of IBD: | Uc |
| Type Of Surgery : | Ileostomy |
| Comments: | I have a great surgeon in Boston.I had my colin taken. 1Wednesday october19 2011.I am8 years old and suffered for almoist 2 years. I am leaving the hospital today.I feel bad for people who suffer. |
| Name: | santana |
| E-mail address: | babybluebabyhazal88@gmail.com |
| Country?: | USA |
| Comments: | i have the same thing you have. i have had so many surgeries since i was like 16 years old. if you would like to get in contact with me, you can email me at babybluebabyhazal88@gmail.com i'm only 22 years old. |
| Name: | Jodi Fenstermaker |
| E-mail address: | jlfenstermaker2008@yahoo.com |
| Country?: | United States |
| Type Of Surgery : | illeostomy |
| Comments: | I am 4 months out and still sometimes not really sure what I am doing. I do have a support group I attend but we only meet every couple of months. I knew nothing about any of this before the surgery. I was sick for about 6 months before the surgery and it really all happened very quickly. I am doing better now, but sometimes it is still hard. |
| Name: | julia galluzzo |
| E-mail address: | gfrenzy2@prodigy.net |
| Country?: | usa |
| Type Of Surgery : | colon resection |
| Comments: | so happy to find your page. I just received my colostomy 2 weeks ago and I feel so isolated. I have a very loving and supportive family, but nobody can understand if they have not gone through it themselves. This is supposed to be "temporary" but will see what happens... thanks |
| Name: | Mirlin Dobson |
| E-mail address: | mirlindobson2@gmail.com |
| Country?: | USA-Indiana |
| Type Of IBD: | colitis |
| Type Of Surgery : | Ileostomy |
| Comments: | Shaz, thank you so much for this site! It showed me I am "normal" and the help you and everyone on here have given me is beyond words. Thank you |
| Name: | elaine carwood |
| E-mail address: | ecarwood@yahoo.com |
| Homepage URL: | http://haz, http:// |
| Country?: | ireland |
| Type Of IBD: | ulcerative colitus |
| Type Of Surgery : | permanent ileostomy |
| Comments: | Hi Shaz,
I had the same operation as you but I was 35 when I underwent what i now call loosing a bad friend and gaining Sarah Stoma. Like you i go swimming, cycling, wear mostly what i like, and am the healthiest i have been in years. It started for me when i was 17 and left school and i spent most of my early years avoiding going to places unless i knew there was a toilet there or on the way. Now i am very grateful to my doctors and family and mostly to Sarah Stoma and can wear a big smile on my face again. |
| Name: | Philip Defriend |
| E-mail address: | phillip.defriend@sky.com |
| Country?: | England |
| Type Of IBD: | U.C |
| Type Of Surgery : | Ileostomy |
| Comments: | Hey there,what a positive outlook. I will try that myself. I have only just had my surgery (6weeks ago) and im back to work and getting on with life. I have a wife,step-son and 7 dogs. I call my stoma Stewie,just like from Family Guy.Do you think i should stay with Stewie or go through they "risky" J-Pouch? Look forward to hearing from you if you have the time. Philip |
| Name: | jon esler |
| E-mail address: | mjesler@hotmail.com |
| Country?: | oz |
| Type Of IBD: | ileostomy |
| Type Of Surgery : | not sure |
| Comments: | hi Shaz,came down with chronic ulcerated cholitas on 16/04/11 didn,t know what was happening,neither did my doctor,no history,after two weeks of getting sicker went to hospital and diagnosed by the specialist,he tried everything to no avail so flew me to st vincents melb.the team there tried keyhole removal,no good bowel perforated,huge problem but i,m ok now28/09/11.and just been told i can have a j pouch so its all good ,i think,time will tell.so catch you later. |
| Name: | belinda |
| E-mail address: | ballisticbelinda@yahoo.co.uk |
| Country?: | uk |
| Type Of IBD: | colostomy |
| Type Of Surgery : | emergency Hartmans Proceedure |
| Comments: | Having had an emergency Hartmans Proceedure in June, I am hoping to be reversed in November but would like to thank you all, for being there! |
| Name: | Sue Rafuse |
| E-mail address: | wsbam@eastlink.ca |
| Country?: | Canada |
| Type Of Surgery : | Urostomy |
| Comments: | Enjoyed reading your web page..Some amazing stories... I however didn't see too many with 50+ females who have had radical cystectomy... I have in place an ileal conduit.. Last March I was diagnosed with a large tumour in the bladder... had chemo and then the surgery in July 2010.. So far reports have been ok... On the big picture I am so glad to be alive but on the smaller picture it is scary and by times a lonely road even though I am surrounded by family and friends.. I work for Doctor in a small town called Liverpool in Nova Scotia Canada and the population is quite small so finding someone else with this condition has been hard but there is plenty of other cancers unfortunately here in this town and everywhere... Thanks for the great site. |
| Name: | susan |
| E-mail address: | susan_salomon@hotmail.com |
| Country?: | USA |
| Type Of Surgery : | Ileostomy reversal |
| Comments: | Hi Shaz, My name is Susan I'm 47 years old and a mother of 3 girls 25,15,& 13. I had a colonoscopy in March 2011 and my gastro Doc found a tubularvillonosa in my rectum & she sent me to a surgeon & the surgeon confirmed I had a tumor 7cm around in my rectum which was removed in June 2011,(left with j-pouch/ileostomy) It was a success & they found no cancer!! Sept 9th I went in for a leak check of my bowls,everything went well & I can go and have my reversal surgery which is scheduled for Oct 10th 2011.
I want to thank you Shaz for sharing your story and having such a wonderful web page, it's helped me feel better about my upcoming reversal surgery & keeping up all the good vibes & thoughts along with the power of prayer. God Bless!! Very Truly yours, Susan |
| Name: | Colin Warhurst |
| E-mail address: | info@colinwarhurst.co.uk |
| Homepage URL: | http://www.colinwarhurst.co.uk |
| Comments: | I am a knobhead and I think I'm Liam Gallagher, what should I do? |
| Name: | Guy |
| E-mail address: | teetsmel@gmail.com |
| Country?: | U.S.A. |
| Type Of IBD: | Chrohn's/ulcerative colitis |
| Type Of Surgery : | total colectomy |
| Comments: | Hello Shaz.I'm Guy and I have the monster.This is my first effort to communicate with fellow ostomates at a website of this nature.We'll see how it flies.There is much more to me but for now,I just wanted to say greetings.Thank you. |
| Name: | Samantha |
| E-mail address: | samanthaleadbetter@yahoo.com |
| Country?: | USA |
| Type Of IBD: | Crohns and U.C. |
| Type Of Surgery : | Proctocolectomy/Ileosomy |
| Comments: | Hello Shaz, I had my surgery on September 2, 2011. I'm 41yrs of age and I am still trying to adjust to this new life. I live in Livermore, Maine I have a wonderful husband of 12 yrs. We have 2 adult children, 3 dogs and a cat. I guess that's about it for now. Thank you for sharing your story. |
| Name: | Virginia Larsen |
| E-mail address: | Virginialarsen@me.com |
| Country?: | US |
| Type Of Surgery : | Urostomy |
| Comments: | Shaz,
Glad to know you have done so well for so long. I am a new urostomate (April 5, 2011) and absolutely loved Australia when we visited in 1998. We couldn't get to the west coast, but did travel to Tasmania. I am gaining weight and wanted to know how your weight gain and loss (good for you!) affected your stoma. Did it retract, and did you have leakage problems? Your ostomy page is very nice and got me to thinking of setting one up. Take care, Virginia Larsen |
| Name: | Heather Donaldson |
| E-mail address: | dononswan@bigpond.com |
| Country?: | aus |
| Type Of IBD: | crohn's |
| Type Of Surgery : | nothing major yet!! |
| Comments: | Hi Shaz.... I can't remember if I've been here before and left a note... but here's another one anyway...
Great to see this page getting lots of response... and you are looking good girl.... keep up that dieting... I'm very jealous you are losing all that excess and I seem to be finding it... do you want to come and take some back from me??? he he... anyway see ya on facebook or the forum... or in person one day... soon?? |
| Name: | Susan Bailey |
| E-mail address: | svbmedrec@gmail.com |
| Country?: | USA |
| Comments: | My aunt, who is 91 11/12 has had an ileostomy for fifty (50!) years. She has required only one hospitalization and one ER visit for dehydration issues in all that time. Now she is in renal failure and been given a very fluid restricted diet, and is starting outpatient dialysis. My thoughts are that all those years of fluids leaving thru her stoma kept the strain off her kidneys, and delayed her kidney failure for decades. Does this make sense to you? I'm thinking maybe she needs to keep up with her fluids and do intend to talk with the nephrologist. She is alert and making her own decisions. Thank you |
| Name: | dr.t.g.balachandar |
| E-mail address: | tg_bala@yahoo.com |
| Homepage URL: | http://www.gastroclinic.net |
| Country?: | INDIA |
| Comments: | Hi,
i am a gastrointestinal surgeon from india.i am impressed with your courage and attitude.i wish to show my ostomates about your perseverance, determination and about your better part of life. thanks, regards, dr.t.g.balachandar. |
| Name: | Sharon Ellison |
| E-mail address: | ellsn4957@yahoo.com |
| Country?: | USA |
| Type Of Surgery : | colostomy |
| Name: | evelyn |
| E-mail address: | evelyn_mills2001@sbcglobal.net |
| Country?: | USA |
| Type Of IBD: | ilostomy |
| Type Of Surgery : | ilostomy |
| Comments: | I have had a ostomy for 51 years. I am having trouble getting drugs to work on me.
Need your help. |
| Name: | Rotha Cook |
| E-mail address: | rothacook@att.net |
| Country?: | U.S.A. |
| Type Of IBD: | Cancer of Rectum |
| Type Of Surgery : | Permanet Colostomy |
| Comments: | I had this surgery on Dec.2ed 2009. I am now cancer free, w/ a pouch hanging from my abdomen. I am still adjusting as I live alone w/ y pet cats. I still go and have blood work and follow-ups w/ my Dr's. They tell me that my blood is perfect and NO MORE CANCER !!! I praise GOD for my healing and for HIS servants, the Dr's who helped me, hospital, nurses, cancer center, etc. I had MEGA doeses of chemo and radiation . I am 72 yrs old, and have two grown children....Thanks for your site. I bought THE OSTOMY BOOK from online, one of the BEST that I have read so far, and I subcribe to THE PHONIX, for all ostomates... Wonderful info in all of them....my best to all out there ! I dont know anyone, personally who has this and had never heard of it before I got it.I learn from reading and trial and error ! For me, the ODER is the worst part.... |
| Name: | Alison kelley |
| E-mail address: | alisonkelley32@gmail.com |
| Country?: | USA |
| Type Of IBD: | none |
| Type Of Surgery : | none |
| Comments: | I am looking into taking the plunge. I just need some support. I am concerned about life afterwards since I am a single woman and lonely now as it is. I just don't want to be alone for the rest of my life. |
| Name: | Mary-Anne Yost |
| E-mail address: | hobartwolf@hotmail.com |
| Country?: | Australia |
| Type Of Surgery : | Ileostomy and urostomy |
| Name: | Mike |
| E-mail address: | mbfree1@bigpond.com |
| Type Of IBD: | Totalcolorectomy |
| Type Of Surgery : | Ileostomy |
| Comments: | I Posted an inquiry using an INCORRECT EMAIL ADDRESS I put mbfee1 instead of mbfree1@bigpond.com Sorry MIKE |
| Name: | Tina Gargano |
| E-mail address: | tina.gargano@gmail.com |
| Country?: | USA |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Complete Colectomy |
| Comments: | I love your attitude Shaz! You are a great inspiration!! |
| Name: | MIKE LAWRENCE |
| E-mail address: | mikelawrence1@hotmail.co.uk |
| Country?: | FRANCE |
| Type Of IBD: | U/C PLUS C/D |
| Type Of Surgery : | PERM STOMA |
| Comments: | HAD STOMA 5/8/2001 LOTS PROBLEMS SINCE WILL SEND SOME PICS. |
| Name: | Nina Nikolaou |
| E-mail address: | nikolaou_nina@hotmail.com |
| Country?: | Australia |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Permanent ileostomy |
| Comments: | Got it again as reversal didn't work. Have had it for a month so still adjusting. At least able to sleep at night! |
| Name: | Meghan |
| E-mail address: | mjswander@gmail.com |
| Country?: | USA/Ohio |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Subtotal Colectomy w/ Ileostomy |
| Comments: | Glad I found your website as I am a new ostomate. Will be sure to return for updates. Thanks for sharing your story. |
| Name: | Manly Mike |
| E-mail address: | mbfee1@bigpond.com |
| Country?: | Australia |
| Type Of IBD: | Ileostomy |
| Type Of Surgery : | Total Colo Rectomy |
| Comments: | Hi Shaz I would like to ask anyone out there if they have any PERFORM Sachets they no longer need, I have extra PERFORM ordered each month, due to a DATE ERROR I missed out on a Months supply and Cannot manage.
I will pay postage for here in Australia. Hoping to hear from anyone who has an Alternative to PERFORM also, Since ILEO GEL was discontinued PERFORM is NOT as good, I admit I had to GRIND ILEO GEL in the COFFEE GRINDER to Powder form for it to work successfully. In the USA they have it in Powder form, guess the bureaucrat who decided PERFORM was suitable was not an OSTOMATE Looking forward to anyones help MIKE |
| Name: | MJ |
| Country?: | USA |
| Type Of IBD: | UC |
| Type Of Surgery : | ileostomy |
| Comments: | Caregiver of my husband who is a 2 year stroke survivor. Had UC for 15 years and finally had an ileostomy in May 2011. He is paralyzed on the left so I will be taking care of his stoma, bags, the whole 9 yards...YIKES!! It's gotta be better than running to the bathroom every 10 minutes! lol
Glad I found this site, there's a lot of useful information! MJ |
| Name: | Irene Rogers |
| E-mail address: | irene_8@optusnet.com.au |
| Name: | John Chamberlayne |
| E-mail address: | jchamberlayne@cox.net |
| Country?: | USA - Virginia |
| Type Of Surgery : | Colostomy |
| Comments: | Thanks for the information. I'm going to be living with this for a long time. Irrigation looks like the way to go. |
| Name: | Maurie |
| E-mail address: | mdregan@bigpond.com |
| Country?: | Australia |
| Type Of IBD: | Diverticular disease |
| Type Of Surgery : | Loop Colostomy |
| Comments: | G'day,
Fantastic site ! I had suffered from Diverticulitis since 1999 having bouts in hospital on and off over the years before Surgeon finally decided to remove part of my large bowel. I had the op in June 06, it took a long time to get used to having my Stoma. Hated it at first ! "Don't we all ?" Nothing like a bag blow out at 2 am in the morning while asleep Lol ! I had my stoma for 5 yrs until May 10 of this year. I was finally able to say goodbye to my little red buddy on my stomach and had the reversal op. So far things are going good, couldn't have hoped for a better outcome. Cheers, keep up the good work ! |
| Name: | Carol Jones |
| E-mail address: | flmamabear@aol.com |
| Country?: | USA |
| Type Of Surgery : | Ileostomy |
| Comments: | Emergency surgery December, 2010, as a result of a ruptured colon during a colonscopy. May 2011 went for reversal but was unable to complete due to further complications. I had to have a portion of my colon removed due to blockage and sever diverticulitis. I am scheduled for "take down" surgery to close my ileostomy August 16, 2011. I certainly hope all goes well and the completion can be done. This has been very rough for me and my family. And, I lost my belly button during all the surgeries! |
| Name: | Kathryn Redgrave |
| E-mail address: | kat_lahnie@live.com |
| Country?: | Australia |
| Type Of IBD: | Crohns Disease |
| Type Of Surgery : | Illeostomy |
| Comments: | Thank you so very much for sharing your story. I had the surgery only 3 months ago after suffering from Crohns for 10 years. Takes alot of adjusting but im getting there. Thanks again its pages like yours that make me realise i am not alone through all this..
Kathryn :) |
| Name: | Guillaume |
| E-mail address: | guipur@hotmail.com |
| Country?: | Québec |
| Type Of IBD: | ulcerative colitis |
| Comments: | Thanks for the site! I visit because i'm gonna have the second operation (j pouch) in 3 weeks. I had an ileostomy a year ago and I was out of the hospital after 2 days :P The use of laparoscopy probably helped a lot and, the fact, that I hate hospitals. |
| Name: | SCOTT GREEN |
| E-mail address: | qenzore11@live.com |
| Country?: | Australia |
| Type Of Surgery : | colostomy |
| Comments: | Pisces, 1972, because of my back I have had a bag for 39 years, met heaps butt.. mostly elderly. I am still going fine and hope you and all your/our new friends are doing the same.
Pisces"dreamer,artist,etc... all so true" Qenzore |
| Name: | Bob Hewson |
| E-mail address: | bob.hewson@yahoo.com |
| Country?: | Philippines |
| Type Of IBD: | Urostomy |
| Type Of Surgery : | Cancerous bladder removal |
| Comments: | Hi,
Good to see you have a positive attitude and have put up this site to help others. I am receiving and supplying donated appliances from Australia to those here who can not afford to purchase them, this is just about every Filipino here. Bob |
| Name: | Mark Parry |
| E-mail address: | ostomy@mparry.co.cc |
| Country?: | Australia |
| Type Of IBD: | ulsurative Colitus |
| Type Of Surgery : | Iliostomy |
| Comments: | Thank you for a very informative site
Mark Parry |
| Name: | Valerie Sanders |
| E-mail address: | sanders214@cfl.rr.com |
| Country?: | USA |
| Type Of IBD: | Crohns |
| Type Of Surgery : | illeostomy/proctectomy |
| Comments: | Very very helpful site from what i have seen so far. Thank you for starting it. I have had my ostomy since 1983 but still need to look things up at times |
| Name: | camille |
| E-mail address: | napili407@gmail.com |
| Country?: | USA NYC |
| Type Of Surgery : | dad had colostomy at 83 |
| Comments: | he us in hospital now with an obstruction given ng tube to suction his stomach of fluid/build up. have u ever heard of this? he was constipated few days ago |
| Name: | Gee |
| E-mail address: | g.elle1950@hotmail.co.uk |
| Country?: | uk |
| Type Of IBD: | UC |
| Type Of Surgery : | Ileostomy |
| Comments: | I had my ileo., a day after my 21st birthday due to U.C. I have lived with it for 40 yrs this July. It has been up and down for most of those yrs, various problems, ie., stoma refashion twice, then a hernia five yrs ago where I am left with a tiny, tiny stoma and a retractable one. So I had to change to a convex for this reason. Does cause me to leak from time to time. I am married and have a grown married child with two grand children. |
| Name: | ricko |
| E-mail address: | ricko@gmx.net |
| Homepage URL: | http://09005-telefonsex.com |
| Country?: | - |
| Type Of IBD: | - |
| Type Of Surgery : | - |
| Comments: | Hi
really nice site. I like the style of it. CU |
| Name: | Jonathan |
| E-mail address: | ak977@ncf.ca |
| Country?: | Canada |
| Comments: | Hi Shaz:
It is now 9 days after my colon (cancer) surgury and temporary ileostomy. I can across your site in one of the magazines my ET nurse gave me on the way out of the hospital. This is an icky situation, but then so is wiping one's ass. Just a different icky. I am doing well and will browse your site further. Regards, Jonathan |
| Name: | Michael |
| E-mail address: | michael@sms.de |
| Homepage URL: | http://telefon-ficken.com |
| Country?: | Hamburg |
| Comments: | Hi
really nice page here, cool layout. Greets |
| Name: | Lauren |
| E-mail address: | lmcd868@Google.vcom |
| Country?: | usa |
| Type Of IBD: | u.colits |
| Type Of Surgery : | perf.and hernias |
| Comments: | Had. Colostomy. 8yrs ago
.more hernia surgeries. Now should I have. Ileostomy? |
| Name: | Patrick Doyle |
| E-mail address: | chilers1@gmail.com |
| Country?: | Ireland |
| Type Of IBD: | crohns colitis |
| Type Of Surgery : | emergency ileostomy31/12/07.Total proctectomy 04/04/11 |
| Comments: | received top treatment under prof.O'Connel and team in St.vincents university hospital in Dublin.Suport of family and friends realy helped in recovery. Feeling good now. |
| Name: | trevor burson |
| E-mail address: | trevburson@gmail.com |
| Country?: | ireland |
| Type Of IBD: | uc |
| Type Of Surgery : | pan colectomy |
| Comments: | Hi Shaz, Ive just moved to melbourne from ireland 6 weeks ago and im still waiting for the sun to shine!!. had my op 9 years ago in ireland and had no support or people to talk to. long story short things are great, got a great job, starting a new life in aus and looking forward to some sunshine.well done on the blog, and keep up the good work..trevor |
| Name: | Pamela |
| E-mail address: | pammy@netins.net |
| Country?: | USA |
| Comments: | I have trouble with mine blowing out and it gets all over me That is hard to deal with sometimes. |
| Name: | Kathy |
| E-mail address: | klutt7358@yahoo.com |
| Country?: | United States |
| Type Of Surgery : | iliostomy |
| Name: | Ron A M Tune |
| E-mail address: | ronamtune@live.co.uk |
| Country?: | South Wales UK |
| Type Of Surgery : | Ileostomy, total colectomy, removal of rectum and anus |
| Comments: | 1991 i had symptons, initially treated for IBS, various meds were prescribed, eventually diagnosed with UC, operation 10th June 1996, Colin my stoma made his debut, 1999 rectum & anus removed, tbh without the op things could've bn so much worse, Colin needs Me and i need Colin, my Wife/Soulmate is my rock, and to my Daughter and Son, thanx Guys ur both kool. Online support like this site is priceless, Thankyou. |
| Name: | Donna Lantaigne |
| E-mail address: | donnalantaigne@aol.com |
| Country?: | USA |
| Type Of IBD: | ? |
| Type Of Surgery : | Ileostomy / Suprapubiccatheter |
| Comments: | Hi Shaz's, I'm new to all of this I had my surgery March 23,2011. I agree with you on it's all about attidude and adjustments, My problem is I love swimming and relaxing baths but I am not sure if I can stay in water for awhile without the pouch falling off.I am a seven time cancer survivor.....I named my ostomy "Illy" and my catheter "Pubie" gotta have some fun ! Just to let you know I'm from Northwood N.H. |
| Name: | Cynthia |
| E-mail address: | gully52@yahoo.com |
| Country?: | Canada |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | ileostomy |
| Comments: | I visited your site once a long time ago, then forgot until someone reminded me, so I'm going to try to visit here more often.
Cynthia |
| Name: | Kathy |
| E-mail address: | klutt7358@yahoo.com |
| Homepage URL: | http://www.yahoo.com |
| Country?: | United States |
| Type Of Surgery : | iliostomy |
| Comments: | Lost over 100 pounds due to diverticulitis. Since my sugery I have gained all that back and more and cannot seem to take any weight off....getting very frustrated. I walk and the only think that accomplishes is I nreak the seal on my bag........ |
| Name: | Anthea |
| E-mail address: | antheagrace@yahoo.com.au |
| Country?: | Australia |
| Type Of IBD: | Stoma, Ostomy |
| Type Of Surgery : | Removal SCC, anal tumour. bowel resection and gynae reconstruction |
| Comments: | Hi Everyone,I have just found this site.It is four years since my surgery and am going strong! Shaz, thankyou for this site....a great idea! Good luck all..All the best.... |
| Name: | Hunter |
| E-mail address: | hunter@rogers.com |
| Homepage URL: | http://audio.ya.com/javibcnya/tadalafil/tadalafil-sellers.html |
| Comments: | Our partners : <a rel="dofollow" href="http://agstudio.virtuale.org/propranolol/">propranolol</a> is about propranolol... <a rel="dofollow" href="http://flas.xhost.ro/carisoprodol/garland-carisoprodol.html">garland carisoprodol</a> is about garland carisoprodol... It's cool!.. This is great work and it is good to meet you all. Webmaster of our site |
| Name: | JERRYTALBERT |
| E-mail address: | JERRYTALBERT29@AOL.COM |
| Homepage URL: | http://AOL |
| Country?: | USA |
| Type Of Surgery : | UROTOMY |
| Name: | Timmy Gwinn |
| E-mail address: | tim10768@att.net |
| Country?: | United States |
| Type Of IBD: | Crohns |
| Type Of Surgery : | Illeostomy |
| Name: | LINDA DARNER |
| E-mail address: | lindadarner69@cox.net |
| Country?: | USA |
| Type Of IBD: | Crohn's Disease |
| Type Of Surgery : | ileostomy with short bowel |
| Comments: | Hi Shaz, this is great! what a wonderful outlet for those who are needing an ostomy. Last week this old body had its 71 birthday (although I'm only 40 LOL). It's battled Crohn's since it was 12 years old. I know how fearful having to have an ostomy is. Believe me, I always said I'd die first. But, after several bowel resections, a colostomy,and finally an ileostomy with only a little bit of small intestine left, this body is still here and still going strong. Shaz, you look great! |
| Name: | Shane Eden |
| E-mail address: | shanesmusic@msn.com |
| Homepage URL: | http://www.myspace.com/worldtruthtournow |
| Country?: | united States of America |
| Type Of Surgery : | colon cancer surgery |
| Comments: | Hi again, Sharon: I'm such a klutz! I wrote the wrong URL in my first post. The correct one is www.myspace.com/worldtruthtournow. I'm a musician who is trying to save our planet/world by sharing Truth. That's why I love you/your page so much, because you're a sharegiver, too. God Bless & keep you, and happy "burps" 2 U! Shane XO |
| Name: | Shane Eden |
| E-mail address: | shanesmusic@msn.com |
| Homepage URL: | http://worldtruthtournow.com |
| Country?: | united States of America |
| Type Of Surgery : | colon cancer surgery |
| Comments: | Hi Sharon: Love your page & Love You. I'm brand new to my bag and looking fwd to talking w/you. God Bless you and Happy Life!!! Shane XO |
| Name: | Emma |
| E-mail address: | emma@prodigy.net |
| Homepage URL: | http://yhsfnhs.001webs.com/concerta/concerta-review.html |
| Comments: | Our partners : <a rel="dofollow" href="http://digilander.libero.it/alfoo76/atenolol/atenolol-cost.html">atenolol cost</a> is about atenolol cost... <a rel="dofollow" href="http://enen.sufx.net/aldara/aldara-molluscum.html">aldara molluscum</a> is about aldara molluscum... You have very nice site... But I think you should add some more pictures!!! our site rules! |
| Name: | Emma |
| E-mail address: | emma@prodigy.net |
| Homepage URL: | http://yhsfnhs.001webs.com/concerta/concerta-review.html |
| Comments: | Our partners : <a rel="dofollow" href="http://digilander.libero.it/alfoo76/atenolol/atenolol-cost.html">atenolol cost</a> is about atenolol cost... <a rel="dofollow" href="http://enen.sufx.net/aldara/aldara-molluscum.html">aldara molluscum</a> is about aldara molluscum... You have very nice site... But I think you should add some more pictures!!! our site rules! |
| Name: | Sonia Madrigal |
| E-mail address: | smadrigal80@gmail.com |
| Country?: | USA-California |
| Comments: | I dont have an ostomy, I am a nurse and work at a hospital as a wound care nurse and I work along side with our ostomy nurse and teach patients about their new ostomy. Like your web site. You give it that personal touch, that only someone that has experience it can say. |
| Name: | Jo Meyer |
| E-mail address: | Jomeyerdesign@aol.com |
| Country?: | USA |
| Comments: | I have had no surgery. I am doing some investigative work for a story I am writing.
Your story, Shaz, is very moving. I had no idea before I started, that the ostomy surgeries could take place on young children. You are truly an inspiration, and your attitude! I admire you! With all best wishes, and great things to come, Jo |
| Name: | grace butterfield |
| E-mail address: | gracebutterfield@hotmail.co.uk |
| Country?: | england |
| Type Of IBD: | crohns |
| Comments: | hi im due to have surgery on the 21/04/11 and i might have to have the bag i will know more when i see my doctor at the hospital on the 28/03/11 your information has helped me alot in understanding and learing to live with the bag im scared about having the op and how it will affect my family i have a husband and a 12 year old son who are vert good to me it would be lovely to hear how you are take care x x
|
| Name: | michael dobbin |
| E-mail address: | mdobbin53@gmail.com |
| Country?: | ireland |
| Type Of IBD: | uc |
| Type Of Surgery : | ilestomy |
| Comments: | i thought i had registered but i cant get access could you please check for me
|
| Name: | Linda Lallow |
| E-mail address: | lllallow@frontier.com |
| Country?: | USA |
| Type Of IBD: | bladder cancer |
| Type Of Surgery : | radical urostomy |
| Comments: | In 2010 had chemo, and then urostomy in Oct. 2010. So far, so good. Just had an excellent doctor's report this week. I'm 67, and getting along well with the bag. Thank you for this sight. It was sent to me by a neighbor. |
| Name: | Alicia Jensen |
| E-mail address: | rowan_pikachu@yahoo.com |
| Country?: | USA |
| Comments: | Thank you. I have frequently visited your page since my son's diagnosis with stage 3 cancer in 2003. Both his bladder and prostate were removed in the surgery. He has a stoma. I have returned now, as he is having kidney issues and they want to internalize his stoma into more of a neobladder requiring catheterization. My son got his stoma at age 1 1/2, then will be 9 in July. :) |
| Name: | michael |
| E-mail address: | mdobbin53@gmail.com |
| Country?: | ireland |
| Type Of IBD: | uc |
| Type Of Surgery : | ilestomy |
| Comments: | hi shaz
had surgery 25/02/2010 after living with uc for 10 years i am so glad now to have my life back the ilestomy i was very frightened of but i thank god every day for giving me back my life great site thank you for it Michael |
| Name: | Nick Mihalopoulos |
| E-mail address: | nick@parthenoninc.com |
| Homepage URL: | http://www.devrom.com |
| Country?: | USA |
| Comments: | Thanks for your contribution to the ostomy world! |
| Name: | Bruce Penta |
| E-mail address: | brucepenta@yahoo.com.au |
| Country?: | Australia |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Ileostomy |
| Comments: | Hi Shaz, nice to meet you. Great page. I have been an Ileosomate for 4 and a bit years now (December 2006) and have had 2 operations since then for blockages, one an emergency and one for a preventative peristomal hernia (which was also the cause of the first blockage)in 2009 and 2010.
I am 49 years old and work full time as a chef in a busy hotel in South Australia. I am married with 3 children and also play guitar and sing in a band playing 70's classic rock. We mainly do parties and small pubs. Really enjoy life as the alternative doesn't interest me much! LOL. I had never had a symtom of UC in my life until I had some rear end bleeding one day and the doctor put me in hospital and within 2 weeks of my hospitalisation I was an Ileostomate. The dctors said it was the most severe and untreatable case they had ever seen with no previous symptoms. Had to take the stump and all so no reversal possible! Just my luck eh?! Anyway enough with my dribble. Regards Bruce. |
| Name: | iety |
| E-mail address: | iety@gmail.com |
| Homepage URL: | http://minibikesforsale.blogspot.com/ |
| Country?: | usa |
| Comments: | Thank a lot for information and this my website <a href="http://minibikesforsale.blogspot.com/">mini bikes for sale</a> |
| Name: | Bill |
| E-mail address: | trishfan2003@yahoo.com |
| Homepage URL: | http://www.griffinsdesigns.com |
| Country?: | USA |
| Comments: | Your site is inspirational. |
| Name: | Carolyne Byers |
| E-mail address: | byers77@hotmail.com |
| Country?: | Australia |
| Type Of Surgery : | End Ileostomy |
| Comments: | I nearly cried when I found your page.... |
| Name: | Janet Mullens |
| E-mail address: | janetsbutterflykisses@yahoo.com |
| Country?: | USA |
| Type Of IBD: | Crohn's |
| Type Of Surgery : | Illeostomy |
| Comments: | Love your positive attitude. I was 24 years old when Crohn's hit and weighed 67 pounds. For 2 years I was told it was all in my head. So happy when a young doctor took an interest and put a real name with all the agony. That was 1979. First surgery in 1986 and second one (the one that saved my life) in 1987. Life with quality is a treasure. Always looking for new and better products and cute undies and such. Makes me feel better about me. Would not want to go back to that life again. Sometimes I have flares, but I am so grateful Ms. Osto (my nickname), even when she embarresses me (you know the noises). It made me smile when I read your story...keep that attitude, lady and keep on smiling!! |
| Name: | Rebecca |
| E-mail address: | RNA123@sbcglobal.net |
| Country?: | USA |
| Type Of IBD: | N/A |
| Type Of Surgery : | colostomy |
| Comments: | When I was 50 I required a colostomy as a result of my intestines rupturing due to scar tissue and fibrous adhesions from a hysterectomy I had at 34. They removed about 1 foot of intestine and also had to remove a lot of adhesions on my liver and patch it. I just remember being at work and having so much abdomenal pain I had to lay down on the floor under my desk because it hurt too much to sit in the chair. When I finally mustered the energy I told my boss I had to go home and couldn't make it home so went to a friends. I ended up in the ER the next morning and don't remember going into surgery or the first 2 or 3 days after the surgery. The Dr. told me they couldn't get all of the adhesions out and would get more out when they resected the colostomy in 3 months, which would be 3 days after Christmas. I was so excited because my sons who are in the Army would both be home for Christmas. I had contracted MRSA in the hospital and had a heck of a time getting that under control but did.
On Dec. 21st I woke up with the same feeling I had when my intestines ruptured 3 months prior. I called an ambulance and had them take me to a different hospital since I got MRSA at the first one. The ER Doctor who saw me told me I was just constipated and needed to drink that powerful laxative you drink before having a colonoscopy study. I told him an X-ray wouldn't show the rupture and I needed a CT=Scan. He wouldn't order one and wouldn't give me any pain meds because in his mind I was just constipated. I demanded a 2nd opinion and got one 14 hours later. He ordered the CT=Scan which I had 3*1/2 hours after that and it showed I was indeed ruptured and they rushed me into surgery. For the past hour before surgery I was constantly having a dark substance coming out of my mouth that looked like it had coffee grounds in it. I couldn't hold my breath in the CT Scan because it was constantly pouring out. They gave me towels to throw it up in because I was too week to hold an imisis basin. When I went to surgery my Blood Pressure was 69/23 degrees. My temp was 107. They had just left me there all day to stew in my own waste internally. They couldn't get a vein for the IV and had to put it in my jugular. The nurse said I was the only person she had seen with that low of blood pressure who could still talk coherently. I talked to the anesthesiologist and asked him if he thought he could keep me safe with my BP that low. He said I would most likely be on a ventilator a ocuple of days. I was in ICU for 10 days and although my sons came to see me I don't remember it. I was in another room for 4 days after I got out of ICU. Then I was out for 2 days and had to go back into the hospital for a blood clot in the jugular. I finally got the colon resection about 6 months later but this time I went to a teaching hospital in Dallas, TX. and there were no complications. I believe I am beginning to get scar tissue again because I have some areas of my abdomen that seem stuck and are puckering in, almost like I have 4 belly buttons. I have started spitting up stomach acid constantly again over the past few days. I have to move this week because my home was forclosed on because I have had other health issues as well and have gotten behind in my mortgage. I was promised no foreclosure if I surrendered the home in god condition by the 27th of this month. I signed that agreement with my lender. Now I've been served with a subpeona to appear in court for the foreclosure tomorrow morning. I am hurting really badly tonight and cannot stop with the stomach acid that's coming up constantly. I don't know what to do about court. I need to go to the Dr. when they open tomorrow. I don't have an attorney to go in my place. I really don't know what to do. I have never been one to have heartburn or esophigal problems. I just hope this isn't from scar tissue that's run amuck. Thank you for the website to share our stories. It helps knowing others are living life so well even with their colostomies and stomas, etc. Life is very good and Thank God for modern medicine. |
| Name: | pete |
| E-mail address: | sunj@hotmail.co.uk |
| Country?: | england |
| Type Of Surgery : | colostomy to iliostomy |
| Name: | Brooke |
| E-mail address: | brooke@shaw.ca |
| Homepage URL: | http://www.angelfire.com/mt2/hytte/ionamin/online-pharmacy-canada.html |
| Comments: | Our partners : <a rel="dofollow" href="http://kerman.alwaysdata.net/hydrocodone/hydrocodone-online.html">hydrocodone online</a> is about hydrocodone online... <a rel="dofollow" href="http://destilati.wz.cz/nolvadex/drugs-mexico.html">drugs mexico</a> is about drugs mexico... your site is very good! I will wait for updates. Give a look at our site |
| Name: | Joyce Renshaw |
| E-mail address: | jcr121@ymail.com |
| Country?: | USA |
| Type Of IBD: | colostomy |
| Type Of Surgery : | cancer of colon |
| Comments: | Was reffered to your site, and glad to have others who have had the same problems as I have had. Had the surgery 18 months ago, which was emergency surgery, and a tumor which proved to be cancer was removed and a colostomy bag was put on. I have been depressed since, and lots of pain from granuoma around the stoma. The colostomy was placed way to low and my bag hangs down mid thigh. I can't do another surgery, so I live like this. Well thanks for listening |
| Name: | Cjay |
| E-mail address: | ladybiscuit89@hotmail.com |
| Country?: | UK - Scotland |
| Type Of IBD: | Genetic FAP |
| Type Of Surgery : | Ileostomy |
| Comments: | A big hello to everyone!
I had surgury on the 4th of Jan 2008 due to genetic FAP. I found this website by accident actuarly just recently when doing a search online on ileostomys. I love this site its brilliant. Thank you so much Shaz x |
| Name: | margi |
| E-mail address: | hopkins4life_1989@hotmail.com |
| Country?: | usa |
| Type Of Surgery : | colostomy |
| Comments: | checking in again. Hoping things are going well this new year, to all my fellow ostomates. Is there anyone that has experience with convex pouches? Want to try a two piece but have concerns about bags popping off, or if I'm better off sticking with a one piece? No one seems to address this concern specifically, wonder why that is? Or am I being out of line and that it is just not done?
Please forgive me for being rude. Thanx Shaz for sponsoring this site as it has been very comforting knowing that I am not alone. May every one have a year better than the years before! margi |
| Name: | Steve Zuppello |
| E-mail address: | steve.zuppello@gmail.com |
| Country?: | USA |
| Type Of IBD: | UC |
| Name: | Diane Sordahl |
| E-mail address: | postiedi@shaw.ca |
| Country?: | canada |
| Type Of IBD: | crohns |
| Type Of Surgery : | ileostomy |
| Comments: | Hi everyone..
I have had my ileostomy for 26 years, so you might say i am pretty well used to it!! A single lady from canada who would love to write to other singles..there are a lot of us.... |
| Name: | Melanie |
| E-mail address: | newfoundland75@yahoo.ca |
| Comments: | I was very disappointed when a google for ostomy and newfoundland led me to a page on your site which had jokes that were in very poor taste and perpetuate negative stereotypes. They even included the word "newfie" which I consider very offensive. You asked people to keep jokes on the site clean as kids would be reading them, these jokes are very offensive. |
| Name: | Laurie Greenwald |
| E-mail address: | AuntLaurieSim@aol.com |
| Country?: | USA |
| Type Of IBD: | Crohn's |
| Type Of Surgery : | Ileo |
| Name: | Jason Mihalopoulos |
| E-mail address: | jason@parthenoninc.com |
| Homepage URL: | http://www.parthenoninc.com |
| Country?: | USA |
| Type Of IBD: | -- |
| Type Of Surgery : | -- |
| Comments: | An ostomy supply distributor & manufacturer. Thank you for your page. |
| Name: | Dan |
| E-mail address: | d.scullin@bigpond.com |
| Country?: | Australia |
| Type Of IBD: | Cancer |
| Type Of Surgery : | Loop Ileostomy |
| Comments: | Hi Shaz,
I got your link from Bert at SIBY and he says hi from all the crew there. Dan |
| Name: | Brian Nordbye |
| E-mail address: | brianandjoanne@me.com |
| Country?: | Canada |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | Ileostomy |
| Comments: | Have had ileostomy for almost 2 years. |
| Name: | Deborah Lapkin |
| E-mail address: | dalyoga@sbcglobal.net |
| Country?: | USA |
| Comments: | Hi Shaz,
My sis just had an Ileostomy on January 24, 2011. She is doing well. And we read your story and was happy to here how happy you are in your life. My sisters name is Donna Lucatuorto her email is Leo_55@sbcglobal.net Please send her well wishes for a speedy recovery. Maybe you two can talk. Thanks so much for your story, you brightened our day. Love Deborah |
| Name: | John Ryan |
| E-mail address: | jory50@hotmail.com |
| Country?: | USA |
| Type Of IBD: | Crohn's |
| Type Of Surgery : | colectomy, resections ++ |
| Comments: | Had IBD since I was 15. Finally dx w/Crohn's. Had colectomy done by Dr. Rupert Turnbull of Cleveland Clinic in 1972. Any old-timers know him or Norma Gill? Both pioneers in ostomy surgery/management. Have been living well since then-- a few bumps in the road (7 surgeries). Now in remission, PTL! This looks like a great community. I hope to get to know some of you in the near-future. |
| Name: | Jimmy Conway |
| E-mail address: | twitty1223@yahoo.com |
| Country?: | USA |
| Type Of Surgery : | Ileostomy |
| Comments: | I had a permanent ileostomy six months ago.I have had crohns for 40 years.My prior surgery was when I was 19.I am now 55.Papa gotta brand new Bag!! |
| Name: | Alan Mews |
| E-mail address: | almws@btinternet.com |
| Country?: | England |
| Type Of IBD: | Ileostomy |
| Type Of Surgery : | Temp then rejoined |
| Comments: | Hi Shaz, only just found this site and what a joy to find more people with the sam problems.
I'm 65 years of age this year and had a temp colostomy for six months before having it put back (ie - rejoined to the little bit of back passage). In fact I think, my surgeon Mr Seargent, said I was the second person to have that type of operation done. Well I have worked all my life, mostly in the catering industry. Built for bungalows and help to get four kids lol. The only problem I get is soreness around the bottom - that can be cruel and if anyone has answers please email. Good luck and take care, Alan |
| Name: | sarah brown |
| E-mail address: | sarahbrown2005@hotmail.com |
| Country?: | United Kingdom |
| Type Of IBD: | Ulcerated colitis |
| Type Of Surgery : | ileostomy |
| Comments: | Had my surgery sept 2010. |
| Name: | Angie Minor |
| E-mail address: | aminor1960@att.net |
| Country?: | USA |
| Type Of IBD: | Ileostomy |
| Type Of Surgery : | Cancer/blocked colon |
| Comments: | Hi, My Name is Angie. I had my first surgery on 6 22 2009 due to my colon blocked due to colon cancer. I had never heard of an Ileostomy and when this cute young doctor came in to ICU and told me I had cancer and and Ileostomy, I thought, 'What the heck is that". I was still on the ventilator so I was able to ask. I had my ileostmy reversed on 7 25 2010. A terrible day. My brother was killed in a helicopter crash in Mayalsia that day also. Two days later started running fever. I had a bad cat scan the week before on my lungs and I also developed pneumonia. Finally, on 7 2 2010 my doctors decided pneumonia was not by problem, but I was leaking. went back to emergency surgery. My Ostomy had come loose and poo was all in my insides. Stayed in ICU for 5 days, so malnutritioned, so my 4 day stay ended up with 19 days in the hosptial. But, I had a wonderful support team, Love my doctors. They said chemo had damaged my colon, severe scar tissue, and losing my brother was probably a combination of my problems. But, since I have begun research on how to keep the bag on. I really didn't try before because I knew it was temp. Now i'm content with it. for awhile anyway. I guess God, had to show me that I needed to be content with the blessings I have.
Thank you for this website, As I live in a small town, and most people thinks a bag on your side is gross. And most everyone knows I have one. God Bless you Angie |
| Name: | irene |
| E-mail address: | irenekayt@hotmail.com |
| Country?: | Australia |
| Type Of IBD: | ileostomy |
| Type Of Surgery : | removal of peritoneum and cancer of the appendix |
| Comments: | Hi Shaz, I too sm in Perth and glad to find your page. can you reccomend a site that gives good advice about diet with and ileostomy? |
| Name: | Angela Faulk |
| E-mail address: | Anefaulk@aol.com |
| Country?: | USA |
| Type Of IBD: | rectal prolaspse caused severe issues |
| Type Of Surgery : | Colostomy |
| Comments: | I am new to all of this, only been 3 months. So far, it's been rough because I had another serious bladder surgery done at the same time. I dont reccomend it!!! I am just looking for advise in general. Thank you |
| Name: | Gordon Polk |
| E-mail address: | gordyp@ktc.com |
| Country?: | USA |
| Type Of IBD: | ? |
| Type Of Surgery : | Removal of colon |
| Comments: | I am just a few weeks into this new way of living. Still looking for some answers. |
| Name: | terry and nan edmondson |
| E-mail address: | nanedmondsonymail.com |
| Country?: | u.s.a. |
| Type Of Surgery : | bladde and prostate removal |
| Comments: | my husband had this surgery 2 weeks ago. it was removed because of cancer inside the bladder. thank god it hadn,t went outside the bladder. we are both having a hard time knowing what is normal and what isn,t normal because there seems to be a diffrence of oppinion ofour home health care nurse and our surgeons nurse.Like yesterday the urine stoppred. Oh no whats wrong. no one had told us anything about thishappening.anyway w hope your sight will be some hope your sight will be some help for us.. nan and terry edmondson |
| Name: | Shirley |
| E-mail address: | obey12@comcast.net |
| Country?: | USA |
| Type Of IBD: | Bladder Cancer |
| Type Of Surgery : | Ostomy |
| Comments: | Hi-just wanted to say hello & say that I am glad to have found your site. Now I don't feel so alone & will have people I can talk to and that will understand and relate to our daily lives. I am cancer free 3 1/2 years & am happy every day to be alive. I am lucky to have a good husband who has supported me from day one. Without him, not sure I'd be here. Anyway, I am looking forward to chatting with you all. I do have questions on certain things & am sure everyone will have input. Glad to have foound you & thank you so much for your site. Shirley |
| Name: | Steve Swalwell |
| E-mail address: | steve_swalwell@yahoo.com |
| Country?: | USA |
| Type Of IBD: | Ulcerative Colitis, Megatoxic Colon, Familiar Polyposis |
| Type Of Surgery : | Total Colectomy with Ileostomy |
| Comments: | I left my coments in the guest book. |
| Name: | Steve Swalwell |
| E-mail address: | steve_swalwell@yahoo.com |
| Country?: | USA |
| Type Of IBD: | Ulcerative Colitus, Toxic Mega Colon |
| Type Of Surgery : | Ileostomy |
| Comments: | So many here have so much in common. I was 17 years old when I had UC ( Ulcerative Colitus ). My health problems were stress related, I was on my own at that age with UC and clueless. My first surgery came at 18 yrs, a total colectomy ( removal of the Large colon ). The first surgery was tough but I made it. I had two other revision surgeries to my stoma due to complications. In my case, this went on a bit until I was 23 years. I made a life for myself, learned to accept the pouch as part my body physically and emotionally. I had my health back too, I felt good! I am 54 years old now, strong and healthy. I have done pretty much everything I wanted to do physically and otherwise.... I am very thankful for all of these years and the experiences that I would have missed. I have been reading the stories from us here regarding ostomy care and complications. I have had many of these problems resolved over the years. This is a great web site and resource for people with ostomy issues. |
| Name: | Jack |
| E-mail address: | jlyle@lylelevine.com |
| Country?: | USA |
| Type Of IBD: | ileostomy |
| Type Of Surgery : | cancer "debulking" |
| Comments: | Shaz - I like what you are doing and I hope that I can ask a question now and then about this. I was not expecting this outcome when I went into surgery, and I am adjusting to the whole idea. However, the cancer is gone, and that is a small price to pay.
|
| Name: | Carla Piercy |
| E-mail address: | carla_piercy@yahoo.com |
| Country?: | USA |
| Type Of IBD: | Crohns |
| Type Of Surgery : | ileostomy |
| Comments: | I always knew an ostomy was in my future but didnt think it would happen before 30 |
| Name: | Gary Flyte |
| E-mail address: | glif1atangpi@yahoo.com |
| Country?: | USA |
| Type Of IBD: | polyips/colon cancer |
| Type Of Surgery : | illeostomy |
| Comments: | A good attitude and a smile is what got me thru the whole begining. |
| Name: | margi |
| E-mail address: | hopkins4life_1989@hotmail.com |
| Country?: | usa |
| Type Of IBD: | twisted colon |
| Type Of Surgery : | colostomy |
| Comments: | LIFESAVING!!! everthing happened june 22 2008. colostomy,broken leg, stage 4 pressure ulcer. chained to bed for 8 mos.1/2 time outside nurses station. deep depression. feeling better. not so alone. other people have gone through this too!!! THANKS FROM BOTTOM OF HEART! |
| Name: | Susan Molenda |
| E-mail address: | sue.molenda@gmail.com |
| Country?: | us |
| Type Of IBD: | anal cancer |
| Type Of Surgery : | permanent colostomy |
| Comments: | Hi, Shaz. I saw a link to your page while I was reading an ad for an ostomy deodorant. I wasn't very impressed with the product website. They had some misspellings and even an omitted word in the ad copy, so clearly they didn't care about appearing professional.
I have a daughter with Crohn's disease, and since my ostomy surgery, she is less horrified by the thought that one day she might have to have an ostomy. She's lost her insurance, and recently had the chance to take part in a medical study that treated her with a new drug infusion and also their doctor is monitoring her regularly now, even though they released her from the study. It's great to see her getting the care she needs for her disease... and getting paid for it. They paid her 1200 dollars, US.... for a few trips to their offices and of course... for undergoing the infusion, which hopefully will prove to have helped and not harmed her. She does seem to be over the Crohn's flare now, so...I guess it worked. I'm glad to hear that you had your surgery early and have had no more health issues since your childhood. By the way... do you use a deodorizer for your bag? What do you use, if anything? I have found tea tree oil to be very helpful in reducing or even eliminating any odor from my bags |
| Name: | Keith hindley |
| E-mail address: | keith.hindley@bigpond.com |
| Country?: | Australia |
| Type Of IBD: | Ulcerated Colitis |
| Type Of Surgery : | J-Pouch next a Stoma |
| Comments: | Hi Shaz,
I live in Melbourne and 6 years ago I had my colon removed and a J-Pouch set up.I now have pouchitis and will be having my pouch and everything removed and a stoma fitted. I did have a bag for 3 months after my colon was removed so I do know a little about them,but having one perminantly is a differant matter.Can you tell me what is the best kind of bag to use and the best way to look after my stoma.How to prevent a bag from leaking or comeing off. I used to have trouble with burning around the sroma, whats the best producs to take the burning away or to prevent it.How are the two peice bags against a single bag? Thank you for your blog page. Regards Keith Hindley |
| Name: | Deborah |
| E-mail address: | dlb66@aol.com |
| Country?: | United States |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Ileostomy |
| Comments: | I had my surgery to remove the total colon and sew up the butt. I did this after being told the colon was infected with cancer. Having Colitis for 12years and many meds it was time. The threshold of cancer to developed and no other option. I had the surgery in May 2009. So far I am doing well and able to be here for my Mother. She has Dementia and is 84 which is a job in its self. I am capable to care for her and if no for the surgery I would not have been so lucky.
|
| Name: | Robin |
| E-mail address: | robinelisahope@gmail.com |
| Country?: | USA |
| Type Of IBD: | |
| Type Of Surgery : | Illeostomy |
| Comments: | I had my complete colectomy, illeostomy in 1975 due to Chronic Ulcerative Colitis. After my surgery (only 1) I completed high school, went away to college for four years, traveled, experienced several career changes, married, had two children (now 17 and twelve) and just celebrated my 50th birthday...35 years after my surgery, I'm healthy, active and living life to it's fullest.
It's nice to know of someone that has had their ostomy almost as long as me ;) |
| Name: | Zoe Russell |
| E-mail address: | illusionbcp@hotmail.com |
| Country?: | Australia |
| Type Of IBD: | Crohns Disease |
| Type Of Surgery : | Ileostomy |
| Comments: | I have just had my surgery to give me an ileostomy and I apart from still healing after the surgery life couldn't get any better. I no longer have to rush to the toilet 15 times a day. One of the first things me and my partner did was give it a name so Reginald is now part of the family.
|
| Name: | Debbie Frederick |
| E-mail address: | dfred65@vzw.blackberry.net |
| Country?: | USA |
| Type Of Surgery : | Colostomy |
| Comments: | Hi Shaz,
I followed a link from My Pink Button to your page! Good to know a bit of your story, you are a true warrior! Living with an ostomy since you were a kid, truely amazing. Debbie aka Phozzy |
| Name: | Debbie Burnett |
| E-mail address: | d.burnett@makita.ca |
| Country?: | Canada |
| Type Of IBD: | Crohns disease |
| Type Of Surgery : | ileostomy |
| Comments: | I have had Crohns for 30 years and the ileostomy for 14 . |
| Name: | SUSIE |
| E-mail address: | JSFOUNTAIN@aTT.NET |
| Country?: | USA |
| Type Of IBD: | ULCERATIVE COLITIS |
| Type Of Surgery : | ILEOSTOMY |
| Comments: | OSTOMY April14,1977. Well since then. Recent leaks due to weight gain when quit smoking 12-7-07! trying to find way to stop the leaks? |
| Name: | nagłośnienie |
| E-mail address: | coolbabar@gmail.com |
| Homepage URL: | http://www.obslugaimprez.com/ |
| Country?: | kraków |
| Type Of IBD: | eventy |
| Type Of Surgery : | imprezy |
| Comments: | oświetlenie multimedia pikniki wesela koncerty dj na wesele http://www.obslugaimprez.com/ |
| Name: | Kathy Thorn |
| E-mail address: | kthorn62@gmail.com |
| Country?: | Canada |
| Type Of IBD: | Crohn's/Colitis |
| Type Of Surgery : | Colostomy |
| Comments: | I had my colostomy 6 years ago and it's the best thing to ever happen since being diagnosed with Crohn's Disease when I was 25. Since the surgery, I've been on no medication and have had no flareups. Although not always easy to deal with, it certainly beats CD. And once you've adjusted life is so much better because of it
|
| Name: | Nasir khan |
| E-mail address: | khannsr1@gmail.com |
| Homepage URL: | http://www.sakoon.net |
| Country?: | Pakistan |
| Comments: | Really nice web site |
| Name: | Jonah |
| E-mail address: | jonah@gmail.com |
| Homepage URL: | http://www.angelfire.com/folk/scottbourne/carisoprodol/carisoprodol-bargain.html |
| Comments: | Our partners : <a rel="dofollow" href="http://chlastame.kvalitne.cz/online-pharmacy/canada-pharmacy.html">canada pharmacy</a> is about canada pharmacy... <a rel="dofollow" href="http://silviocartoons.no.sapo.pt/oxycodone/drugs-mexico.html">drugs mexico</a> is about drugs mexico... Hi, regards from Germany! Pretty good site! Please support us by visiting our site |
| Name: | Mike |
| E-mail address: | Mbfree1@bigpond.com |
| Country?: | Australia |
| Type Of IBD: | Colo/rectal |
| Type Of Surgery : | Ileostomy |
| Comments: | Hi Shaz at last I have found how to get back to u but I am sure there was an easier way years ago.
Has anybody got any ideas as to why an ILEOSTOMATE with a Permanent Irreversible Colo/ Rectomy Has to Send a Letter to Canberra EVERY SIX (6 )MONTHS One from your GP a CLINICAL LETTER Confirming you have an ILEOSTOMY? What on earth are our beurocrats in Canberra thinking of? Do they think I am going to sell it or something? I appreciate a letter being needed for extra products above the FARCICAL ALLOWANCE per month! eg-: 60 PERFORM SACHETS per month When I empty out at least 105 times per month.And 62 WINDLESS TABLETS for a month, 105 times I repeat, due to Hundreds of tiny Ulcers. Is there anyone out there who would know who I could contact in Canberra, Thanks a MILL if you can tell me a name and address MIKE |
| Name: | FENNEN |
| E-mail address: | GREENTRACTOR02@HOTMAIL.COM |
| Country?: | UNITED STATES |
| Type Of IBD: | COLITUS |
| Type Of Surgery : | COLOSTOMY |
| Comments: | I FORGOT MY USER NAME AND PASSWORD |
| Name: | Wendy Barrie |
| E-mail address: | barriews@hotmail.com |
| Country?: | Australia |
| Type Of Surgery : | Ileostomy/ Cancer |
| Comments: | 1999 was the year. So there is life after cancer colon/rectal. I need to connect with a stomal therepist around Newcastle, haven't seen one for 2 years. Other things on my mind, time to take time out for me I think. Hope you are all handling things reasonably and looking after yourselves. Don't let things get too bad and out of control, reach out for help, no matter how small. Your Ostomy Friend , Wendy Cheers .. |
| Name: | Michael Freedman |
| E-mail address: | mbfree1@bigpond.com |
| Country?: | Australia |
| Type Of IBD: | Ileostomy |
| Type Of Surgery : | Total Colorectomy |
| Comments: | Hi Shaz Many thanks for you prompt reply to my Email, sorry love but I still cannot find a way in to your Guestbook or Ostomy pages, The last time I contacted you it was "Click" on one of the TWO options, NOW I have so many options to chose from, without any success, and I am still getting SSL required, I am going to try once again here on this site, and see what happens after I click Sign the Book MIKE MANLY Here goes |
| Name: | Mike |
| E-mail address: | mbfree1@bigpond.com |
| Homepage URL: | http://mbfree1@bigpond.com |
| Country?: | Australia |
| Type Of IBD: | Ileostomy |
| Type Of Surgery : | Total Colorectomy |
| Comments: | Hi Everyone Mike here in Sydney Australia, I found this site 9 years ago, I must apologise to you SHAZ for not writing often I have been in and out of Hospitals for years too complicated for me to explain in this first entry, I will eventually give you all the details, also forgive me for not using paragraphs, I find they take up too much space, My reason for writing to one and all is to try and find an Alternative for the now Defuct ILEOGEL TABLETS (to thicken he output in the bag and stop the risk of leakage and sloshing around as you move about our daily chores, that movement of the contents of the bag being thin can also cause the bag to Leak around the Flange also to cause it to be pulled off your Stomal Area) Ostomy NSW in there so called "wisdom" are now supplying us with "PERFORM" Sachets. A totally useless product in my opinion, my MAJOR complaint is the Allowance we can have ONE BOX OF 60 per month, I empty my Pouch at least 140 times per month due to a further medical problem, 60 is totally useless, My Doctor and STOMAL THERAPY NURSE have both written for extra, if I get them I do not have any confidence in the product from past experience. Is the anybody out there who can suggest a method of Thickening my Output? Looking forward to some suggestions, except for CORNFLOUR it did not work. MIKE IN MANLY Sydney OZ |
| Name: | dean |
| E-mail address: | deansroof@mts.net |
| Country?: | canada |
| Type Of IBD: | chrohns |
| Type Of Surgery : | ileostomy |
| Comments: | 2 weeks into having a "tag along" your pages helped answer a few questions both me and my wife had. thx |
| Name: | Julie Fitzpatrick |
| E-mail address: | juliethiel@aol.com |
| Country?: | USA |
| Type Of IBD: | urostomy & colostomy |
| Type Of Surgery : | cancer |
| Comments: | Shaz, thank you so much for your site. My husband Peter is still in the hospital but will be coming home tomorrow with 2 ostomys. The hint page has given me a lot of good ideas and I loved the humor page.
Here's a hints to share. Pinch a bend to the bottom of the colostomy bag opening in the opposite direction of its closing, then when opening the bag to empty you don have to fight the closure to get it open. |
| Name: | Leon |
| E-mail address: | balmerbhoy@yahoo.com |
| Country?: | USA |
| Type Of IBD: | spontaneous perferation of bowel |
| Type Of Surgery : | temporary ileostomy |
| Comments: | In January, 2003 I got quite sick starting 90 minutes after eating a chicken sandwich from a fast food chain in Lodi, New Jersey. Was it the sandwich? I do know that 90 minutes is the time it takes between the time I eat and stuff gets in my system. I could not sit in certain ways or I would feel worse. Finally, one week later I was sitting down and had pain so bad I got high from the endorphins. I went to the emergency and spent 24 hours under anesthesia. I had a bag and the room nearest the nursing station and the door was fixed so it would not close. For the next three weeks I had leaks because I could not get it to seal. I went back to the hospital and they removed the ileostomy. The last bag sealed right but it did so only a few hours before the second surgery. Everything was perfect staring with the second surgery but they pulled fat only from my right side and nothing from my left. Other than that I have not had any problems since. |