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Shaz's Ostomy Pages
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Name: leonard ball
E-mail address: lrsball@gmail.com
Country?: canada
Type Of IBD: ulcerative colitis
Type Of Surgery : ileostomy
Comments:I have had your page bookmarked since my surgery in 2001, thanks for being there.
Monday, June 29th 2009 - 08:46:19 AM
Name: pam bland
E-mail address: pbland@telkomsa.net
Country?: south africa
Type Of IBD: eileostomy
Type Of Surgery : total colectomy 1967
Sunday, June 28th 2009 - 11:01:54 PM
Name: fran
E-mail address: fran-mackinnon@hotmail.com
Country?: canada
Type Of IBD: chrons
Type Of Surgery : illeostomy
Comments:thanks for your site. i needed to see something positive today. i am still struggling with the outcome of my operation. i didnt know i had chrons and was never sick! it has only been a year since my op. some days are great but others not so much. but today your site has helped and i want to thank you for that.
Sunday, June 28th 2009 - 12:03:38 AM
Name: Noreen
E-mail address: noreen.gardner@mvms.com
Homepage URL: http://www.mvmsinc.com
Country?: United States
Type Of IBD: None
Type Of Surgery : None
Comments:Hi Shaz,

I just wanted to say hello all the way from Colorado in the USA!

I found your site on healingwell.com and just wanted to let you know that I loved reading your story!

I work for a medical supply company and although I am not an ostomate, we deal with many customers that are. It helps to get first hand accounts to help me help them!

So, thank you for your help!

Take care!
Noreen
Saturday, June 27th 2009 - 02:48:39 AM
Name: drew ngigi
E-mail address: drewngigi@gmail.com
Country?: usa
Type Of IBD: ille
Comments:recent (7 months)_ ille. me and "stacy" are still gettin 2 know each other. she's very tempremental. just chekin sites hav a gud one aussie
Monday, June 22nd 2009 - 04:23:12 AM
Name: Christopher Mott
E-mail address: cbshorty@gmail.com
Country?: United States
Type Of Surgery : Illeostomy
Comments:Great site!!
Sunday, June 21st 2009 - 08:18:18 PM
Name: Debbie
E-mail address: number_one_13@hotmail.com
Country?: Canada
Type Of Surgery : Temporary Transverse Colon Colostomy
Comments:Hey, I had a Hysterectomy in Sept 2008 and a 2 hour surgery turned into 6 hours resulting in waking up with 3 types of Cancer, one of which had grown and punctured through my Rectum, leaving me with a Temporary Loop Ostomy. I will have it for an additional year while I await more surgery as a result of Radiation burning the Rectum and Vaginal wall. Just found this site and wanted to connect with others about Ostomy products. "Skippy" misbehaves regularly. I have plans to be in Australia this August 2009 and a friend nicknamed my Colostomy "Skippy the Bush Kangaroo". Said I was trying to be an Aussie by being a Kangaroo...pouch=Roo...teee heee.
Sunday, June 21st 2009 - 02:32:41 PM
Name: Tony Hendrix
E-mail address: tonycarolhendrix@bellsouth.net
Country?: usa
Type Of IBD: Hirschsprung's disease
Type Of Surgery : Ileostomy
Comments:My nephew is only 7 months old and has Hirschsprung's disease and has already had 70% of his colon removed. His name is Hayden. He might have to have an Ileostomy. We hope and pray he can make it . He is just a baby. Thank You Shaz for sharing your story and testimony. Tony
Saturday, June 20th 2009 - 10:30:05 AM
Name: Deb Finnestad
E-mail address: debfinnestad@aol.com
Country?: USA
Type Of IBD: Crohn's Disease
Type Of Surgery : proctolectomy
Comments:Actually reading as my husband has had Crohn's disease for 19 years and we just found out he has colon cancer and will be having a total proctolectomy with a iliostomy.

I am wanting to learn more about what life will be like for him and I'd love for him to get involved with a support group or just find someone who has went throught this and can give him some comfort and peace.

Thanks for having this site!

Deb
Friday, June 19th 2009 - 12:47:40 AM
Name: Naaem
E-mail address: naaem@yahoo.com
Homepage URL: http://cones.20m.com/actos/index.html
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Thursday, June 18th 2009 - 08:48:08 PM
Name: Scott Hamlin
E-mail address: hamlin38@msn.com
Country?: USA
Type Of IBD: Preforated Diverticulitis
Type Of Surgery : From way below to above my belly button
Comments:Hi Chaz.

You don't know how important you and your web site is for the rest of us trying to discover and cope.

I only have a Colostomy. And hopefully it's supposed to be reversed -that is if Diverticulitus is all that it was. But you know? Even if it is reversed, I'm going to be an ostomate for the rest of my life.

By the way -lucky you!!! I never made it to Perth. I lived in Sydney -actully Kirribilli -right across the harbour from Sydney Proper. I made it to Canberra, and Queensland -Whitsunday.... I love, love, love Australia.

Cheers,
scott
Monday, June 15th 2009 - 07:32:14 PM
Name: bruce edwards
E-mail address: vjd3512@yahoo.com
Country?: oz
Type Of IBD: ileostomate/crohns
Type Of Surgery : ileostomate/crohns
Comments:circumnavigating oz solo in my 28ft yacht ex nz, then the planet.
Friday, June 12th 2009 - 03:49:01 PM
Name: amanda manifold
Country?: england
Type Of IBD: UC
Type Of Surgery : ileostomy
Comments:This was due to ulcerative colitis.I had suffered from this for nearly 8 years before they removed my bowel.
Friday, June 12th 2009 - 03:27:19 PM
Name: John Covington
E-mail address: jcovington@roseandwomble.com
Country?: USA
Type Of IBD: Ileostomy
Type Of Surgery : Complete resection of large intestine and anus.
Comments:Shaz, I read your article. Beautifully written.
I had U/C for 22 years before the Dr's (3 to b exact) that there was a 95% possibility of having colon cancer.
I had "elective" surgery on 10 FEB 1983, on my Mother's birthday, I might add.
When the results came back, I didn't even have a pre-cancerous condition. I went through hell for about 6 months blaming myself for having agreed to the "mutilation" of my body for no reason. Whenever I would have to empty my pouch, I had the greatest desire to take a sharp object and "mutilate" my stoma. I spent about 9 months with a psychirist.
I finally accepted it and am happy that I did have the operation, because the last 26 years, I have been extremely healthy
Once again, thanks for the article, I enjoyed reading it.
Thursday, June 11th 2009 - 05:43:53 PM
Name: Richelle Caffall
E-mail address: richellecaffall@gmail.com
Country?: United States
Type Of IBD: Crohn's
Comments:I stumbled upon your page while looking for info on Ileostomies. I just found out that I will probably need one in the next couple of years. Thank you for being so public with your info...it makes my future look hopeful and less scary!

Richelle
Saturday, June 6th 2009 - 01:53:58 PM
Name: Natalie
E-mail address: diamondtrenf@netscape.net
Country?: USA
Comments:Hi, Wow you sound like a very strong woman, may God bless you. I am just reading about this because my brother is suppose to be having surgery on Monday. When I first found out I felt like his world was ending and I was falling apart. But after reading your blog I realized life goes on. Thank you for allowing me to see part of your world. Sincerely, Sue
Saturday, June 6th 2009 - 01:04:19 PM
Name: Alison Hunt
E-mail address: alih3105@hotmail.co.uk
Country?: UK
Type Of IBD: Ulcerative Colitis
Type Of Surgery : j-pouch
Comments:hi.. i was diagnosed with UC in April 1995, i was in a feeding unit for 8 weeks to give my bowle time to rest and hopefully take to the treatment (steroids) this worked but only for a couple of months. after being admitted time and time again over the next few months i eventually had my first major op on November 5 1995..
i had a temporary ileostomy for 12 weeks and then had it reversed. due to complications i had a second bag fitted for another 6 weeks whilst everything calmed down..

i hated it at first as you can imagine i had only just gone 15 in the may of my op so this was like an alien thing on me.. i eventually got used to it but only as i know it would soon be reversed.

i have to admit i was at my best and most well when i had my bag on (winnie i called it as in winnie the poo!) :-)..

i could eat what i wanted, the only downside of it was the wind and also as i used to sleep on my tummy id wake up and had a few accidents but i suppose it couldnt be helped.. (still embarrassing though)

i had the bag reversed for the second time vowing to never have another again..

i am unable to eat what i want and have to be so careful, to be honest i hate it, my diet is horrible and i have terrible cramps and bloating now. this can really get you down but as my specailist advised the only was to avoid this would be to have a permanant bag on.. (as much as i got used to having winnie with me 24 hrs a day) i have just gone 29 and i dont even want to think about having one back on.. maybe if i was married settled down and in my 40's/50's, but how do you explain it to future partners..... would love to speak to other people with j-pouchs as i dont know anyone in my situation and would love to pick up ideas/info of how they cope..

thanks for reading my bit.. hope to hear from someone soon

alison
x
Saturday, June 6th 2009 - 03:31:35 AM
Name: stephanie
E-mail address: stephaniea52@msn.com
Country?: Canada
Type Of IBD: BE
Type Of Surgery : urostomy
Comments:I have had my urostomy now for 51 yrs, before that I wore a colostomy four yrs, Im 57. I have a question I have had many infections over the years,and have passed many kidney stones (since my teens) but the last three years I am making these stones to big so have to have surgaries to get them out, which I rather not do again, last yr I had the tubes into my back and kidneys for 5 months not the best feeling packing 3 bags. I was told the other day that the stones might be because of Parathyriod has anyone ever heard of this? Thank you Steph
Saturday, June 6th 2009 - 03:30:56 AM
Name: shonda baswell
E-mail address: thebaswells@yahoo.com
Country?: usa
Type Of IBD: colostomy
Type Of Surgery : colon cancer
Comments:im fixing to have my rectum removed and i want to know what to expect as far as where they sew you haw bad it hurts and where do they cut you
Thursday, June 4th 2009 - 06:51:44 AM
Name: Sandra Stevens
E-mail address: woolley1898@verizon.net
Country?: U.S.A.
Type Of IBD: Constant N.T.Urination
Type Of Surgery : Urostomy
Comments:Hi to all that is reading this;
"I am in need of some information reguarding,having a Urostomy done."
I had my rectum removed the end of March.The doctor wanted me to see a Urologist before he did the surgery to see if my bladder should be removed or just have it re-routed.She said that she found nothing that warrented having my bladder fixed,but yet she wanted to do the Botox injections after my surgery and I was back on my feet.I found a good Urologist near me,that I went to see,a month ago.We talk and I told him that I am up at least 3 to 5 times a night going to the bathroom.He send me have a bladder and kidney scan done.He does think that the Botox injections would help me.When I lay on my sides at night,it is a sure bet the with in a half hour I am in the bathroom,so I have to lay on my stomach all night long.I have a bad back as well,so I can not lay on my back.The doctor has tried to give me a couple types of medicine to help stop me from going to the bathroom that I have not has yet been on in the past to help me from going so much during the night,but I can not take them,because I have Restless Leg Syndrome,and the medicine interfers with that.So I was wondering just how is the surgery done,where do they put the stoma at,and are you cut down the center of your stomach or just above the pelvic bone.I have also had a permanent colostomy for three years this coming June.I was just wondering if maybe someone can give me some ideas on how it is done.If you can,I would love to hear from someone who has had it done.There is a good chance that I may have to have one done.
I love this site and have been on it several times.I love reading it at least once a week.
Thank You
Sandra
Friday, May 29th 2009 - 08:59:54 AM
Name: constance lofty
Country?: usa
Type Of IBD: e colitis and polyps
Type Of Surgery : ileostomy
Tuesday, May 19th 2009 - 06:09:13 AM
Name: Kathy
E-mail address: kathryn5340@hotmail.com
Country?: UK
Type Of IBD: FAP
Type Of Surgery : Ileostomy
Comments:I had surgery in 1980.
Monday, May 18th 2009 - 04:06:01 PM
Name: Karen
E-mail address: karensrainbow4@hotmail.com
Country?: USA
Type Of IBD: UC
Type Of Surgery : Ileostomy
Comments:Hi Shaz,
I haven't "stopped by" in awhile, but thought I'd pop in and say hello to all the other gorgeous "bag ladies and gentlemen" out there. Life remains wonderful. It's been 21 1/2 years since my sugery, and at 42 I am healthier than ever. I remain an adventure junky and hope my fellow ostomates are finding joy in adventures, too. The ostomy was such a life saver (many of us wouldn't be here without it), so I try and take each day as a chance to love life. I don't recall ever say "I can't" because of the ostomy - but an always excited "I can" - not really paying attention to the ostomy (it's just how we use the bathrom, right - and nothing more). So, those who know me know I'm still an exercise junky, a scuba diver, a traveler, and a nature freek. Thanks to ostomy surgery, I am alive today, and get to cliff hike in Tobermory, scuba dive in Key West, ride horses through the Mountains, and dance on the beach at sun rise (starting at sunset - of course!). Love life, dears ones. We were ALL given a gift. Use it to your fullest and most heart-felt efforts. Be happy!
Monday, May 18th 2009 - 10:43:27 AM
Name: Karen Taylor
E-mail address: kat221@bellsouth.net
Country?: U.S.A
Type Of Surgery : Colon resection that didn't turn out right. So now a temporary ileostomy until everything heals.
Comments:I love your outlook on life Shaz. My biggest problem is leakage since I'm now well enough to be more active. I was sick for about 3 months afterwards, and I was in and out of the hospital.
Saturday, May 16th 2009 - 02:28:07 AM
Name: Lisa
E-mail address: 1235813@charter.net
Country?: USA
Type Of IBD: Crohn's Disease
Type Of Surgery : Ileostomy
Comments:Wow! What a great site you have! I was searching online to see what a urostomy bag looked like and found your site. Great tips. And I thought I knew all after 15 years...!
Thursday, May 14th 2009 - 04:54:26 PM
Name: Terry Edwards
E-mail address: tbe1217@aol.com
Country?: USA
Type Of Surgery : PMP
Comments:An online friend recommended your site to get ideas about my diet. I had my PMP surgery April 13, 2009 and having a few eating, digestion, elemination problems.
Thank you for helping us.
Monday, May 11th 2009 - 11:17:30 PM
Name: Joan Warner
E-mail address: wwjwbjw@embark.com
Country?: USA
Type Of Surgery : Colorectal
Comments:I just had my surgery in Feb, 2009. I am still getting used to taking care of the colostomy bag. I am 74 and have a good attitude.
Saturday, May 9th 2009 - 09:09:09 PM
Name: peter Magee
E-mail address: between2parks@rogers.com
Country?: CANADA
Type Of Surgery : COLONOSCOPY
Comments:LOOKING FORWARD TO 'WORLD OSTOMY DAY
OCTOBER 3, 2009
Friday, May 8th 2009 - 09:44:16 PM
Name: beccagal
E-mail address: beckydylan@yahoo.com
Country?: usa
Type Of IBD: ulceritive colitis
Comments:I have had my colon removed in October 2008. I went to the doctor today because I have been havig bleeding from my rectal stump which was left in place only to be told that I am going to have to have my rectal stump removed. What is the procedure and is it easier than the surgery I had to have my colon removed?
Tuesday, May 5th 2009 - 07:59:06 AM
Name: margy
E-mail address: margy@vic.chariot.net.au
Country?: Australia
Type Of Surgery : permanent illiostomy
Comments:Hi Shaz,

I had my surgery in 1998.
I was 1st fitted with a temp bag but unfortunately complications arose so 2 months after I had to have a permanent bag..... which I loath.

I am trying to seek information regarding a J pouch.. is it an advantage or does it just make things "worse".
Tuesday, April 28th 2009 - 02:23:42 PM
Name: margy
E-mail address: margy@vic.chariot.net.au
Country?: Australia
Type Of Surgery : permanent illiostomy
Comments:Hi Shaz,

I had my surgery in 1998.
I was 1st fitted with a temp bag but unfortunately complications arose so 2 months after I had to have a permanent bag..... which I loath.

I am trying to seek information regarding a J pouch.. is it an advantage or does it just make things "worse".
Tuesday, April 28th 2009 - 02:23:14 PM
Name: Betty Kanavel
E-mail address: kanavel@msn.com
Country?: United States
Type Of IBD: Diverticulosis
Type Of Surgery : No Surgery
Comments:Hey Shaz,
I have been trying to e-mail you and I can't. The Reason I was trying to reach you was I now have a web cam and I thought you and I could talk over the internet. What calling program do you use Shaz. I have Skype and Windows Live and Yahoo. Please e-mail me and tell me what time is good for you. I can tell you that 10pm Saturday my time and 1pm Sunday your time. We could switch the days like Friday and Saturday. Love Ya Betty Kanavel
Sunday, April 26th 2009 - 12:19:28 PM
Name: Betty Kanavel
E-mail address: kanavel@msn.com
Country?: United States
Type Of IBD: Diverticulosis
Type Of Surgery : No Surgery
Comments:Hey Shaz,
I have been trying to e-mail you and I can't. The Reason I was trying to reach you was I now have a web cam and I thought you and I could talk over the internet. What calling program do you use Shaz. I have Skype and Windows Live and Yahoo. Please e-mail me and tell me what time is good for you. I can tell you that 10pm Saturday my time and 1pm Sunday your time. We could switch the days like Friday and Saturday. Love Ya Betty Kanavel
Sunday, April 26th 2009 - 12:15:29 PM
Name: Claire Clancy
E-mail address: clairebear04@optusnet.com.au
Country?: Australia
Type Of IBD: none
Type Of Surgery : none
Comments:I'm a student(enroled nursing) at TAFE in SA who was researching for a question i needed to answer for an assignment, came across your site. I just wanted to say how normal you make it sound to have Harriot .I am currently a carer at a nursing home and I attend to a couple of clients that have colostomy's, I have seen them acept the condition they now have to live with, but they haven't embraced the fact that they are still alive,they seem to be a bit uncomfortable about their condition, maybe its because of their age or even their upbringing. Anyway I was enthused with your aceptance and happiness in the way your site is set up, keep up the good work with chearful words and encouragement to all. God bless Claire
Tuesday, April 14th 2009 - 09:26:54 AM
Name: ryan anderson
E-mail address: ryesuperman@yahoo.com
Country?: USA
Type Of IBD: crohn's
Type Of Surgery : ileostomy
Monday, April 13th 2009 - 06:45:19 AM
Name: Jolene
E-mail address: maynerjolene@yahoo.com
Country?: USA
Type Of IBD: Ileostomy
Type Of Surgery : Ovarian cancer recurrance
Comments:Thank you so much for being so darn positive.
It's been just since last June I had my surgery. I was told that it would be temporary and am waiting, as patiently as I can.
I hate having to hide the pouch, wear different clothes, hide myself from the world. I haven't been so kind with my name for my stoma, I'll keep that a secret for now.
Anyway, thank you for your positive attitude, perhaps it'll rub off on me.

PS
Do have a job? How do you deal with your pouch and the removal of the waste in an eight hour day?
Tuesday, April 7th 2009 - 12:33:23 AM
Name: Mrs Margueriye Moss
E-mail address: mardiamos@yahoo.co.uk
Country?: Manchester Gt Britain
Type Of Surgery : ileostomy
Comments:I have had my ileostomy for 10 years now due to ulcerative colitis which took away my life for nearly 5 years. I have had no problems until now and have had to have an hysterectomy 4 weeks ago due to the fact that my vagina fell into the crevice made by the removal of my bowel. Ah well life goes on, you have a very positive attitude and I wish you a long and happy life. Marguerite Moss
Monday, March 30th 2009 - 08:38:38 PM
Name: Sounida
E-mail address: sounida69@gmail.com
Country?: India
Type Of Surgery : Illeostomy
Comments:Hi Shaz,
Good to see a person with the same status as me.I too had my Illeostomy at the age of 12.I had gone for a Cystoscopy & the die administered burnt my entire baldder & left ureter.I went into lots of complications and was in Coma for 15 days.Lord Jesus revived me.I had my urostomy after that and am happy now.Now I am 39 and have a son aged 19.I would like to keep in touch with ostomates like me.Keep in touch.
Sounida.
Monday, March 30th 2009 - 07:28:11 PM
Name: Bonnie
E-mail address: bflikke@hotmail.com
Country?: USA
Type Of IBD: ileostomy
Type Of Surgery : TEM/Bowel Resection/Hysterectomy
Comments:Hi Sharon and Harriet,
Finding and reading your page was a wonderful thing. I am almost 4 weeks post surgery and have yet to name my stoma. It will be with me for a bit longer so as I heal up i'm sure something will pop into my head. Thank you for making this web site for people like me to help me feel more comfortable with having an ileostmy. Sometimes I feel so alone with it.
Monday, March 30th 2009 - 08:59:21 AM
Name: Bonnie
E-mail address: bflikke@hotmail.com
Country?: USA
Type Of IBD: ileostomy
Type Of Surgery : TEM/Bowel Resection/Hysterectomy
Comments:Hi Sharon and Harriet,
Finding and reading your page was a wonderful thing. I am almost 4 weeks post surgery and have yet to name my stoma. It will be with me for a bit longer so as I heal up i'm sure something will pop into my head. Thank you for making this web site for people like me to help me feel more comfortable with having an ileostmy. Sometimes I feel so alone with it.
Monday, March 30th 2009 - 08:59:07 AM
Name: Sandra Stevens
E-mail address: woolley1898@verizon.net
Country?: U.S.A.
Type Of Surgery : Recum Removal
Comments:HI,
I have been having a lot of problems with drainage from me rectum and vagina,for two years now.I have been to six different doctors and none of them could find the problem.So my husband and I decided to widen our search for a Specialist that knew what was happening and what to do about it.We ended up all of the way up in Pittsburgh,PA.,which it about a two hour drive from where we live.But we found a specialist that knoww the problem and is going to fix it for me.I am having my rectum removed,on the 30th of this month.I already have a permanent colostomoy,which was done three years ago this coming June.I have also been told that there is a hernia that has attached itself to my stoma.So the surgeon also have to try and find away to try and remove the hernia with out messing up the stoma.I may also have to have me stome re-routed.I am looking forward to getting the surgery done and over with so that I can get rid of this mess that I have been dealing with for two years now.But I am also starting to get nervous and my body is filling up with anxiety.There are a million things running through my mind now,and I am counting down the day until my surgery.I don't really like being that far from my husband,family and friends,but I guess I don't have a choice at this time.I will be in communication by phone.My pastor said that he my try and make it up there if he has the time,and bring my husband with him.He just live two doors down from us.I have had a lot of surgeries,but this will be the longest one I have yet to be under for.The surgery will be about four to five hours with all that he has to do.
I am a regular member of the Ostomy site the Shaz's has up and running.I have got a lot of answers from that site and love it.It has been a big help to me.If any one who reads this,can give some input on what to look forward to,I sure would apprecite hearing from you.
Thanks for reading this,and god bless you.
Sandra
Wednesday, March 25th 2009 - 05:33:50 AM
Name: Celina
E-mail address: musicula@yahoo.ca
Country?: Canada
Type Of IBD: UC
Type Of Surgery : Ileostomy
Comments:In Vancouver BC or Canada, has anyone out there had a J-pouch redone (after one has failed) and if so, can you provide me with a doctor's name that will do it?
I have had my colon and about 1 ft. of small intestine removed with rectal stump still intact. I only have the rectum because I was too ill for them to do more surgery @ that time. This was 20 yrs ago and was told the rectum was no longer viable (due to muscle control) and of course if it too failed, living with less small intestine (shortened bowel syndrome) obviously, would be even worse. Back then they did an S-pouch and soon after, stopped doing them at all, because they realized it wasn't as good as the J-pouch. I was young and didn't know that the hospital having only done 60 of these surgeries was not a good number! I obviously just wanted the reversal done asap. I was a rare and acute case @ the time, but I recovered quickly from the pouch procedure. About 10 days later however, a suture somehow burst and developed peritonitis, then a nurse gave me an enema that wasn't supposed to be done and I became deathly ill (once again) and was lucky to survive, and lost the pouch. I cheated death 3 times in 9 months, after only having UC for 8 months (and 15 emerg visits in 1 yr). I didn't react to any meds and had to learn about the disease only after nearly dying from it.
ANYWAY...I just want to know if anyone has had a J-pouch redone, preferably in Canada, successfully or not.
Any info will be greatly appreciated!
Bless you all, my kindred spirits..
Celina.
Thursday, March 19th 2009 - 02:16:07 PM
Name: Celina
E-mail address: musicula@yahoo.ca
Country?: Canada
Type Of IBD: UC
Type Of Surgery : Ileostomy
Comments:In Vancouver BC or Canada, has anyone out there had a J-pouch redone (after one has failed) and if so, can you provide me with a doctor's name that will do it?
I have had my colon and about 1 ft. of small intestine removed with rectal stump still intact. I only have the rectum because I was too ill for them to do more surgery @ that time. This was 20 yrs ago and was told the rectum was no longer viable (due to muscle control) and of course if it too failed, living with less small intestine (shortened bowel syndrome) obviously, would be even worse. Back then they did an S-pouch and soon after, stopped doing them at all, because they realized it wasn't as good as the J-pouch. I was young and didn't know that the hospital having only done 60 of these surgeries was not a good number! I obviously just wanted the reversal done asap. I was a rare and acute case @ the time, but I recovered quickly from the pouch procedure. About 10 days later however, a suture somehow burst and developed peritonitis, then a nurse gave me an enema that wasn't supposed to be done and I became deathly ill (once again) and was lucky to survive, and lost the pouch. I cheated death 3 times in 9 months, after only having UC for 8 months (and 15 emerg visits in 1 yr). I didn't react to any meds and had to learn about the disease only after nearly dying from it.
ANYWAY...I just want to know if anyone has had a J-pouch redone, preferably in Canada, successfully or not.
Any info will be greatly appreciated!
Bless you all, my kindred spirits..
Celina.
Thursday, March 19th 2009 - 02:15:20 PM
Name: Terri Dial
E-mail address: tazz238@aol.com
Country?: USA
Type Of Surgery : Total Colectomy
Comments:It is nice to be able to see others that are going through some of the same things. I had my 3rd baby on January 5th and 48 hours later was taken in to emergency 'exploratory' surgery where they removed my colon. This has been very overwhelming for me but I am blessed to be otherwise healthy. The Dr's are not sure what happened -- twist, nicked during delivery??? I am scheduled for a re-anastamosis in a couple of weeks and am looking forward to it but at the same time very nervous.
Saturday, March 14th 2009 - 12:12:47 AM
Name: Dani DeCamino
E-mail address: ddecamino@msn.com
Homepage URL: http://myspace.com/danidec
Country?: United States of America
Type Of IBD: Crohns and other stuff
Comments:Thank you! :) I sent you an email.
Friday, March 13th 2009 - 06:26:27 AM
Name: Jessica Savage
E-mail address: jessicalynnsavage@gmail.com
Country?: USA
Type Of IBD: Crohn's Disease
Type Of Surgery : reversal
Comments:Hi,
Your story sounds just like my Dad's. The only difference is that he suffers with chronic diarrhea. It's constant and he is miserable most of the time. I was wondering if you deal with this? He had Crohn's and had to have a bag due to an emergency surgery. A few years ago he had it reversed and is almost to the point of wishing that he had not due to the diarrhea. Do you know of anything he can do? He has been dealing with the diarrhea for ten years and is desperate. He has tried everything and has went to several doctors. Any advice or remedy you can suggest, he would try. Thanks for your time.
Thursday, March 12th 2009 - 10:35:51 AM
Name: Tina Michelle Eller
E-mail address: carebear422001@yahoo.com
Country?: United States
Type Of IBD: Ulcerative Colitis,Chrons, and Gastroparesis
Type Of Surgery : entire colon removed and now have permanent illieostomy
Comments:Hi Shaz,I just wanted to tell you how much I love your site and how inspiring it has been for me to read about other ostomates, I don't have any family members that understand how it is to deal with the daily challenges that I have to deal with having an ostomy along with other medical problems, it's refreshing to know that I have somewhere that I can connect with others.
Tuesday, March 10th 2009 - 09:27:06 AM
Name: rhonda gilbert
E-mail address: rkg3369@gmail.com
Country?: united states
Type Of IBD: ileostomy for now
Comments:i really enjoyed reading your story. for now i have an ileostomy but thats about to change. i was diagnosed in 2004 with colorectal cancer and had the ileostomy done tempoarily (supposedly)! it has been nearly 5 years now and after several attempts to repair the radiation damage i have come to realize im gonna have this for life! tomorrow i am havin surgery to change to the colostomy. I put it off over and over with the hope of a miracle! now i realize i AM the miracle! im nearly five years cancer free and get to enjoy life with my family every day!
Monday, March 9th 2009 - 04:44:45 AM
Name: Sue
E-mail address: hsshupert@aol.com
Country?: US
Comments:I am signing in on behalf of my spouse who is going to have surgery soon. He has has ulcerative colitis for 5 years and it has been really hard for him especially since he is or was very active. He recently was hospitalized for the 3rd time for severe bleeding and all that goes with that. The drs have been using drugs to help since he was diagnosed and nothing has worked. This visit to the hosp. helped him make the decisions to have the surgery. I found your web site as I was surfing and it has been a help to me to understand what is going to happen and things we need to know. Thanks for all the sites we can go to through your site. I will keep you up todate on our experiences. Thanks again
Sunday, March 1st 2009 - 02:41:14 AM
Name: Cliff from Canada
E-mail address: cbeagan@cogeco.ca
Country?: Canada
Type Of Surgery : sub total colectomy 1996
Comments:Hi again Shaz. Haven't been here for a long time. Too busy attending birthdays, figure skating,ice hockey, school socials, etc., with my 14 grand kids. Have had no Ostomy problems for the last 7 years but I think I should get rid of my rectal stump. Problems with it this past month.
Hope all are fine.
Cliff Beagan
Saturday, February 28th 2009 - 10:13:18 AM
Name: Jim Short
E-mail address: jshort@arvis.us
Homepage URL: http://arvis.us
Country?: USA
Type Of IBD: UC
Type Of Surgery : total colectomy
Comments:Hey there! I didn't have to deal with Ulcerative Colitis for years, I had mine compressed into 1 month. Went in the hospital on 11/15/08 (or 15/11/08 for you crazy Europeans), responded to no treatments, had to have surgery or die. So, on 12/08/08 (or 08/12/08 *sigh*) I had my colon removed and live with an ileostomy. At first, I thought I'd rather die than live with this thing. . .now, the entire process of caring for Henry (my stoma) is rather meditative. Nothing is allowed to interrupt my one on one time with Henry. No phone calls are answered, no door buzzers are responded to, etc. etc.

(p.s. I know you're not "technically" European, but after living 8 years under W's control, we're all a little confused over here in the USA - but we're feeling better)
Wednesday, February 25th 2009 - 12:47:32 PM
Name: Donna Dellow
E-mail address: ddellow@hotmail.com
Country?: New Zealand
Type Of IBD: Colostomy
Comments:I had no idea so many accesories were available
Monday, February 23rd 2009 - 03:55:23 AM
Name: Lana Morris
E-mail address: lm014w5515@blueyonder.co.uk
Country?: United Kingdom
Type Of IBD: Ulcerative Colitis
Type Of Surgery : Colostomy/ileostomy
Comments:I am booked in for 24th March for above operation and getting quite nervous - but after reading your page I feel much calmer.....Thanks Shaz!!
Sunday, February 22nd 2009 - 06:32:10 PM
Name: uzma
E-mail address: uzma_ahmad@hotmail.com
Country?: pakistan
Type Of IBD: ulcerative colitis
Type Of Surgery : total colectomy
Comments:u r seemed a brave lady, i m inspired of u as u gave me courage to live with stoma. i m 32 years old lady n a school teacher.my surgery have done in september, nowadays i m under treatment of cancer, that is chemotherapy.yup i had cancer of rectam.but thanks god 2 give me a new life
Sunday, February 22nd 2009 - 02:23:07 PM
Name: awilmeth
E-mail address: bigawilmeth@yahoo.com
Country?: USA
Type Of IBD: n/a
Type Of Surgery : n/a
Comments:RN taking refresher course after 18 years off for child rearing. Inspiring story good resource
Saturday, February 21st 2009 - 10:47:46 PM
Name: Kathy
E-mail address: kdbeeson@sbcglobal.net
Country?: USA
Type Of Surgery : ileostomy
Comments:I am so pleased to have found someone who faces the same challenges as I do. I am especially thrilled to have found an Aussie from down under. I live in Texas. Thank you for sharing your story with the world. You are indeed a very special person.
Saturday, February 21st 2009 - 12:15:33 AM
Name: linda young
E-mail address: gogrl54@yahoo.com
Country?: usa
Type Of Surgery : colostomy urostomy
Comments:I love your site i'm just haveing trouble with all the supplies thank you for the lift-up i needed that!! Bless you
Friday, February 20th 2009 - 04:52:55 AM
Name: Lady Na'ilah
Homepage URL: http://www.sugarsisters.org
Country?: USA
Comments:Dear Sister,

This is a special invitation for you to come and visit our site S.U.G.A.R at http://www.sugarsisters.org

We all experience life's season and sometimes we can not define our purpose.
At SUGAR we will walk along with you all seasons and periods of your life; when there is love, warmth and joy as well as in any time of difficulty, sorrow or sickness, weather you are too tired or too busy.
We will encourage one another to live life at its fullest sharing our experiences, talents and abilities.

We will walk this journey together!

A mission to think about each other as sisters in everything we do.

EVERY WOMAN COUNTS!

Looking forward to see you with us,

Love and Blessings,

Lady Na'ilah
Wednesday, February 18th 2009 - 12:37:51 PM
Name: Antonio Diniz
E-mail address: mhdiniz31@dataone.in
Country?: India
Type Of IBD: Ulcerative Collitis
Type Of Surgery : Ileostomy
Comments:Hi Sade,
You seem to be a bold, courageous and friendly lad at 13. It is unfotunate that you to wear a bag at this tender age. I truely sympatise with you. I started at the age of 60. I too went through severe pains and excessive bleeding, needing about 18 pints fo blood transfusion. Surgery was the only solution.Colectomy rids you from your illness, except that you are left with a handicap that is quite manageble.I doing fine. Sade let me assure that your positive attitude I am sure you will do well in life. You will get plenty of support and encouragement through Shaz's Ostomy pages and your future will continue to be bright
Best of luck and regards.

Antonio Diniz,
India
Tuesday, February 17th 2009 - 04:23:09 PM
Name: Antonio Diniz
E-mail address: mhdiniz31@dataone.in
Country?: India
Type Of IBD: Ulcerative Collitis
Type Of Surgery : Ileostomy
Comments:Hi Sade,
You seem to be a bold, courageous and friendly lad at 13. It is unfotunate that you to wear a bag at this tender age. I truely sympatise with you. I started at the age of 60. I too went through severe pains and excessive bleeding, needing about 18 pints fo blood transfusion. Surgery was the only solution.Colectomy rids you from your illness, except that you are left with a handicap that is quite manageble.I doing fine. Sade let me assure that your positive attitude I am sure you will do well in life. You will get plenty of support and encouragement through Shaz's Ostomy pages and your future will continue to be bright
Best of luck and regards.

Antonio Diniz,
India
Tuesday, February 17th 2009 - 04:22:50 PM
Name: Antonio Diniz
E-mail address: mhdiniz31@yahoo.com
Country?: India
Type Of IBD: Ulcerative Colitis
Type Of Surgery : Ileostomy
Comments:Hullo Shaz,
Shaz's Ostomy Pages is invaluable, informative and very useful. It provides a kind of succour to people who are ostomates giving them a sense and feeling that they are not alone with their handicaps. Your pages bring together people various parts of the world together to share their experiences and also receive ideas, suggestions and above all messages of comfort and encouragement.
Keep up your good work!
Regards,
Antonio Diniz
India
Tuesday, February 17th 2009 - 04:02:26 PM
Name: Sade Weathers
E-mail address: sadeinatl@aol.com
Country?: usa
Type Of IBD: ulcertive colitis
Type Of Surgery : colectomy
Comments:Hi im 13 years old and was diagnosed with UC in November of 2009 and in december had to have my whole colon removed and i currently have a ileostomy. I wanted to share my story with other teens and let them know that it isnt that bad. im not saying that somedays you may be sick of it because beleive me i do. but one thing that really helps me is i think about the people that have to have there's for the rest of there life. lucky for me i dont. And for the people that are about to have the surgery i just had dont be scared beleive me, if you had the same pains i had with UC then after the surgery you will feel TONS better. i promise. but you have to keep in mind that its not forever. Oh yea and also at first i didnt want this bag because i thought i wouldnt be able to wear my normal tight shirt and jeans but i tried it and guess what?! you can! :] but anyone that wants someone to talk too or can give me any tips PLEASE email me!
Tuesday, February 17th 2009 - 06:03:47 AM
Name: bostomy
E-mail address: tom-harrington2@yahoo.ca
Country?: Canada
Type Of IBD: ileosomy
Type Of Surgery : three times no large bowl and 6 14 removed from small bowl
Comments:Hi would like to jion this site i think that I may have about 2 years ago and dont know acc. old email was about the same as now
Tuesday, February 17th 2009 - 01:04:58 AM
Name: Patty DuShane
E-mail address: Iam424pd@aol.com
Country?: USA
Type Of IBD: Crohns Disease
Type Of Surgery : Ileostomy
Comments:This is so great to be able to share stories with people who understand what it's like living w/an ostomy
Monday, February 16th 2009 - 11:28:37 AM
Name: Farhat Ali
E-mail address: capricorn_king@hotmail.com
Country?: Pakistan
Type Of IBD: UC
Type Of Surgery : Ileostomy - J pouch - Takedown in 3 months
Comments:Hi all

UC, ileostomy and jpouch, all these are not common in Pakistan (in fact in whole Asia u may not find much), I havent found any jpouch person in Pakistan except few. But thanks to the internet i found almost all of the requisite info. My special thanks to shaz n people alike.

Not much of Ostomy products are available in Karachi, Pakistan (currently i use coloplast 2 piece), while I could not find any supporting products.

The year of UC was most painful in my life, lapses, flare ups, steroids, take offs from the work and career, are my memories.

At first I was afraid of surgery, cause there was no example infront of me but after having my colon removed life become much easier, almost normal, the only add thing is bag.

I have some skin irritation issues after my jpouch surgery (thats may be b/c this time its loop ileostomy compare to end ileostomy of the first operation).

I hope thing will be remain good after my takedown.

my message for all u people is "Keep fighting"

UC started : June 2007
removal of colon (collectomy ?): August 2008
removal of rectum n preparation of jpouch : January 2009
takedown : in 2-3 months time

Saturday, February 14th 2009 - 01:34:17 AM
Name: sammies
Country?: usa
Type Of IBD: crohns colitis
Type Of Surgery : protocolectomy ileostomy
Comments:THANK YOU for this site!!! I'm here from the healingwell forum. surgery scheduled for end of February I just started reading your pages tonight and will read and read again. So helpful. I am so thankful!! Had to take a few deep breaths with the pics--but please a big thanks to each and every person for sharing. I hope I can be as brave.
Saturday, February 7th 2009 - 01:09:17 PM
Name: Leila
E-mail address: leilahowell@gmail.com
Homepage URL: http://expatriatelives.blogspot.com
Comments:Hi Sharon,

For some reason I was sitting here at work and thought of you and working at Diabetes Aust.

Hope you are well.
xxx
Thursday, February 5th 2009 - 07:07:04 AM
Name: Leila
E-mail address: leilahowell@gmail.com
Country?: USA
Comments:Hi Sharon,

I was sitting here at work and for some reason thought of you and the time we spent together at Diabetes :)

Hope you are well.
xxx
Thursday, February 5th 2009 - 07:06:11 AM
Name: Marcia (Marcy) Seelig
E-mail address: marcylea@yahoo.com
Country?: USA
Type Of IBD: Ulcerative Colitis
Type Of Surgery : Ileostomy
Comments:I just found this page today. I am so glad i found it. I had my surgery done when i was 16 years old i am now 67. When i was 22 years old i became the mother of identical twin sons. Then i had 2 miscarriages. Then 16 years after the twins i had another son. I feel so blessed to have my 3 sons. I am also the grandmother of 6 grandchildren. This coming Oct. will be 4 years that i was told i have PSC and have 10 years to live. I have beat the odds all my life and i feel like i can do it again. I also have Osteoporosis. I live each day to the fulliest. I have always been a happy go lucky person. I don't let people know how really bad off i am. I don't want people to feel sorry for me. I am so glad i found your page. Please feel free to email me anytime. Marcy
Tuesday, February 3rd 2009 - 11:50:10 PM
Name: Terry Works
E-mail address: davisworks@comcast.net
Country?: USA
Type Of Surgery : colostomy
Comments:Just ran across your webpage and wanted to say hello.
Monday, February 2nd 2009 - 11:33:33 PM
Name: LORI MCDERMID
E-mail address: lmcdermid@bmts.com
Country?: CANADA
Type Of IBD: SPINAL CORD INJURY
Type Of Surgery : PERMINENT ILLEOSTOMY
Comments:I AM 36 TERRIFIED MY SURGERY IS FEB 8.HOW LONG IS THE USUAL HOSPITAL STAY? PAIN? ANY INFO PLEASE. I AM SCARRED.
Monday, February 2nd 2009 - 08:25:59 PM
Name: MJ
E-mail address: hamlvr@yahoo.com
Country?: USA
Comments:Hey from Texas!
For all of you who might remember Ryan Whitmire from last year.....he just returned to his hospital room after his return to ostomy land. After his reversal March 2008, he had another adhession surgery October 2008...and now again. His friends here at Shaz's helped him so much last year. I'm hoping he will be back here soon with a post. God Bless All of You!

MOM
Friday, January 30th 2009 - 04:12:37 AM
Name: Steve
E-mail address: stevepatterson69@hotmail.com
Country?: United Kingdom
Type Of Surgery : Ileostomy
Comments:Had my surgery last may, thought it was the end of everything.
Not at all, after long stay in hospital I'm now still in touch with medical staff and go out regular with them for drinks etc.....
Thanks for creating the site....
Wednesday, January 28th 2009 - 07:48:07 PM
Name: Steve
E-mail address: stevepatterson69@hotmail.com
Country?: United Kingdom
Type Of Surgery : Ileostomy
Comments:Had my surgery last may, thought it was the end of everything.
Not at all, after long stay in hospital I'm now still in touch with medical staff and go out regular with them for drinks etc.....
Thanks for creating the site....
Wednesday, January 28th 2009 - 07:47:01 PM
Name: Lisa
E-mail address: lisa.brown@paradise.net.nz
Country?: New Zealand
Type Of IBD: Ulcerative Colitis
Type Of Surgery : Ileostomy & Jpouch
Sunday, January 25th 2009 - 05:34:27 AM
Name: Sandra Stevens
E-mail address: woolley1898@verizon.net
Country?: U.S.A.
Comments:Hi Shaz;
I was wondering if there is anyway that you can get some sort of a list started,by having the Ostomy people put the State,City or Country that they are from,when they write or just sign in on it.That way when we are writing to someone with an Ostomy problem we have an idea where they are from,and if we are close to each other,maybe we can meet up some where and get to know each other.I think it would be a nice way to meet and make friends so that we can share our problems in person,if possible.
Just a thought,and hope that you concider it.I think a lot of us would love it. I am from Martinsburg,West Virginia. Sandra Stevens (Colostomy)
Friday, January 23rd 2009 - 08:48:37 AM
Name: Marty Langford
E-mail address: MartyBLJr@cox.net
Country?: USA
Type Of IBD: UC
Type Of Surgery : Bowel resection
Comments:I've dealt with Ulcerative Colitis since 1994, but without too much trouble - pretty well controlled on 6-MP. In November I developed a pain that I hadn't had before. Turned out I'd ruptured a diverticulum. They resected about a foot of colon, cleaned out the infection, and left me with a colostomy. They're planning on reconnecting it in another couple weeks, which I'm anxiously awaiting. I don't think I've dealt with the world of ostomies as gracefully as you seem to have. All the best - nice page.

Marty
Friday, January 16th 2009 - 11:40:04 AM
Name: DINA
E-mail address: WEEZ1967@YAHOO.COM
Country?: USA
Comments:THANK YOU FOR INFORMATION
Sunday, January 11th 2009 - 01:50:51 PM
Name: maree balzer
E-mail address: balzer5@ozemail.com.au
Country?: Australia
Type Of IBD: temp ileostomy
Type Of Surgery : bowel resection
Comments:Thanks your page was really intersting. I am having a bowel resection on 22nd Jan, for bowel cancer and I am trying to learn all about these new terms to be informed.
Maree
Friday, January 9th 2009 - 06:34:30 AM
Name: Vernetta Eriksson
E-mail address: vkleriksson@hotmail.com
Country?: Sweden
Type Of IBD: internal pouch
Type Of Surgery : bladder cancer
Friday, January 9th 2009 - 04:29:50 AM
Name: Joshua
E-mail address: joshua_biotech@yahoo.com
Country?: India
Type Of IBD: Familial Adematous Polyposis
Type Of Surgery : Ileostomy and Ileo RectalAnastamosis
Comments:Hi,

I am known as Joshua and I am from India and I am 24 years old. I actually saw your comments posted on Shaz’s website regarding your type of disease and the surgery. I had to undergo a similar condition in 2002. I was diagnosed with Familial Adenomatous Polyps and they did this ileostomy. But after six months they performed a reconstructive surgery [Ileorectal Pouch Anastomosis]. I am doing fine by the grace of God.

Regards,

Joshua


Wednesday, January 7th 2009 - 06:55:03 PM
Name: Joshua
E-mail address: joshua_biotech@yahoo.com
Country?: India
Type Of IBD: Familial Adematous Polyposis
Type Of Surgery : Ileostomy and Ileo RectalAnastamosis
Comments:Hi,

I am known as Joshua and I am from India and I am 24 years old. I actually saw your comments posted on Shaz’s website regarding your type of disease and the surgery. I had to undergo a similar condition in 2002. I was diagnosed with Familial Adenomatous Polyps and they did this ileostomy. But after six months they performed a reconstructive surgery [Ileorectal Pouch Anastomosis]. I am doing fine by the grace of God.

Regards,

Joshua


Wednesday, January 7th 2009 - 06:54:45 PM
Name: Jo Copeman
E-mail address: Jo.Copeman@perthradclinic.com.au
Country?: Australia
Type Of IBD: Crohn's
Type Of Surgery : Ileostomy
Comments:Had surgery 26 November and still struggling to sit and stand straight but gradually getting there (probably due to osteoporosis caused by years of Prednisolone and general ill health thanks to Crohn's prior to operation). The stoma itself has been the least of my problems behaving itself quite nicely!
Just would like to thank Shaz for this amazing site, helped me immensely in actually deciding to have the surgery in the first place and not be so freaked out about it all. Such a relief to find out there are so many of us out there!
Have decided that 2009 will be the start of the "new" me, 42 years old and in robust good health, will make a nice change!
Cheers and good health and happiness to you all.
Jo.
Tuesday, January 6th 2009 - 05:54:41 PM
Name: Amy Steele
E-mail address: amysteele476@hotmail.com
Country?: USA
Type Of IBD: ulcerative colitis
Type Of Surgery : total colectomy
Comments:It's actually my daughter that has had the above done. I am just her support person. Wish I could have had it done to me that's for sure. She has been awesome. Enjoyed your site. Thanks for sharing!
Amy
Tuesday, January 6th 2009 - 04:20:55 PM
Name: Carol L. Rosson
E-mail address: clr319@gmail.com
Country?: USA
Type Of Surgery : Colostomy
Comments:Happy New Shaz. I'm new at all this stuff it been 6 weeks now. I need to know so many things; foods to eat or not eat, what is the best type of bag? I worry about is there an odor,when will I be able to put on my bag by my self?
Sunday, January 4th 2009 - 06:53:36 AM
Name: Amy
E-mail address: asyrell@skidmore.edu
Country?: USA
Type Of IBD: Ulcerative Colitis
Type Of Surgery : Temp. ileostomy, j-pouch created; entire colon removed
Comments:I was diagnosed with Crohn's only 5 years ago so am a late arrival to the club. Just this year my doctor determined that I probably have 'only' UC. None of the medications we used would hold off flares effectively for more than 6 months. This fall it was determined that I was a candidate for colon removal. I had 2 surgeries as the surgeon initially just hooked the ileum up to the j-pouch. For whatever reason, my system didn't like that so an emergency temp. loop ileostomy was done. I went through 6 different brands and types of supplies before we found a system that would work for me. I've been in a hospital for over 4 weeks just since the first surgery on Oct. 9th. Does it really ever get better?
Wednesday, December 31st 2008 - 06:19:27 AM
Name: John Smith
E-mail address: jsmith117@triad.rr.com
Country?: USA
Type Of IBD: Chrohn's
Type Of Surgery : Colon removal
Comments: Had my surgery on Dec. 19 and was released on Dec. 24. I was happy to be home for Christmas. Had chrohn's for 21 years. Found the cancer during an annual colonoscopy. Caught it early and thankfully, I don't need chemo. Just checking out your web site and hope to hear from you soon. Happy New Year, John
Tuesday, December 30th 2008 - 11:04:30 PM
Name: Barb Lithander
E-mail address: BarbLilthander@gmail.com
Country?: USA
Type Of IBD: rectal cancer
Type Of Surgery : sigmoid colonoscopy
Comments:I just ran across this site today. I was very pleased to find it! I had my surgery 2 months ago. I think maybe I saw this listed on Facebook? I tried to be included in the "group" or whatever it's called, but I never got a confirmation. Then again, maybe it's not you at all. I haven't had a chance to get through the entire site. I'll do that now. Thank you.
Tuesday, December 30th 2008 - 04:55:17 AM
Name: diane
E-mail address: duskyrose17@aol.com
Country?: United States
Type Of Surgery : colostomy
Comments:Hi shaz
your page is most inspiring,
even though i had my permanent colostomy over a year now
iam still depressed about it iam recovering from rectal cancer stage 3 so i know the ostomy saved my life hopefully in time i will adjust u are a angel and a uplift to me iam 59 years old mother,and grandmother i also suffered from ulcerative colitis as a child so i can relate to your experience.
love diane
Tuesday, December 30th 2008 - 03:39:34 AM
Name: Mark
E-mail address: the.fone@gmail.com
Country?: United States of America
Type Of IBD: Crohn's
Type Of Surgery : Ileostomy
Comments:Thanks for creating this web site. I just recently had an ileostomy and it's been a challenge to get used to it. I've had a few "accidents", one in a movie theater and once while I was asleep, where the pouch leaked everywhere, and those experiences have made me even more paranoid about being able to master this. I know that will come in time but for now it's still pretty difficult. Anyway, thanks for making this site for people like me, it makes me feel less alone with this.
Tuesday, December 30th 2008 - 03:28:27 AM
Name: Kathi Elder-Hibler
E-mail address: IHSM@aol.com
Country?: USA
Type Of IBD: temp ileo
Type Of Surgery : rectal cancer
Comments:hoping this site will help me find answers to questions like...how to shower without changing the bag daily, how to us public bathroom when bag needs emptied, how to drink cola pop without the bag ballooning up from the drink...etc. stuff they don't tell you in the hosp.

kathi in Oregon
Wednesday, December 24th 2008 - 02:48:48 AM
Name: K
E-mail address: karriebud@hotmail.com
Country?: USA
Type Of IBD: none
Type Of Surgery : none
Comments:Shaz, I am a medical student in Nebraska and I just wanted to say thanks for the site about the different types of ostomies. It was a comprehensive and well put-together overview of the different surgeries, which is just the kind of thing I was looking for to review. Thanks again, and keep up the great work! (PS - I'll trade you the weather in Austrailia for the below 0 degree weather we've got here right now!)
Wednesday, December 17th 2008 - 01:45:13 PM
Name: Harry Dym
E-mail address: dyhar01@yahoo.com
Country?: usa
Type Of IBD: na
Type Of Surgery : na
Comments:I am a radiology tech-student. I was searching for info on ileostomy and came across your page.

All the best

Harry
Wednesday, December 17th 2008 - 10:17:43 AM
Name: Deborah Elaine Gordon
E-mail address: starlightbarking@hotmail.com
Country?: Canada
Type Of IBD: ileostomy
Type Of Surgery : uneccessery
Comments:Have had ileostomy for 14 yrs due to having a blockage in my small intestine they did not operate for a week after I went into the hospital,by then my bowl had gangrened and I have been left with a small amount of small intestine.Nobody seems to understand how unfeminine with one.I use an open end drainage pouch(hollister)people when they find out yes go OOHHGGGRRRRGGGRRROOOSSS.I was told it was cancer and send home to die,we found out 3 weeks later it was'nt cancer just a blockage.I used to ride horse and show dogs proffessionally but that has been curtailed.Still breed arabian horses and sometimes green break them,but my 26yrold daughter does the rest and shows them.My diet is a laugh so many foods you can't eat.I'm glad I found your site a found a little bit of what goes on in someone elses life.And its neat you are in australia as my brother is a proffesser at the univesity of austraila.Take care
Monday, December 15th 2008 - 03:32:01 AM
Name: Carol Green
E-mail address: carolanngreen@yahoo.com
Country?: USA
Type Of Surgery : colostomy
Comments:I ate Frank's hot sauce two weeks ago and every day since I have had huge messes of orange looking oil on my wafers, bags, sheets, clothes. One drop makes the wafer lose its contact with m y skin and fall off. My ostomy specialist (40 years experience) and my colorectal surgeon have never heard of something like this going on for more than two days. It is like this ostomy is into a non limited orange oil field and it is processing that oil to dispense daily. Help!! I have taken Imodium as my surgeon suggested: no cure.
Sunday, December 14th 2008 - 12:16:36 AM
Name: Ramesh Babu
E-mail address: mail2rameshbabu.m@gmail.com
Country?: india
Type Of Surgery : UroStoma
Comments:HI SHAZ,

I am very happy to see all on this forum .I am an urostomy from my childhood onwards.

right now I am 25 ,working as a software engineer in one of the MNC in India.

I am living with my parents and two elder brothers. Really i am getting motivation and help from my family .

I completed my B.E (BACHELORS OF ENGINEERING IN COMPUTERS).
Right now i am working as webdeveloper (Sharepoint(moss2007) and .net technologies)



Suggestions to Urostoma People:

1> Be positive always.
2> Drink plenty of water .
3> Take lightweight food.
4> Maintain stoma appliances as much as we need.


Life is going cool now..

recently i attended for the ostomates india annual meeting in Bangalore.

I was really happy to meet the people in the annual meeting of ostomates.


About Me :

DOB:1983

type of stoma :Uro Stoma( from 1983)

EDUCATION:BE(COMPUTERS SCIENCE)

Working as :Software Engineer in Indian MNC

EMAILID:mail2rameshbabu.m@gmail.com

country:india

state:bangalore

Inspiration: Mother Teresa,Abdul kalam,Stephen William Hawking.

My INTERESTS: EACH AND EVERY DAY I WILL LOVE TO LEARN NEW THINGS IN TECHNOLOGY AS WELL AS IN LIFE.

Hobbies:

watching movies.
surf the web.

If you want any suggestions on Urostomy PLEASE FEEL FREE TO SEND A MIAL. mail2rameshbabu.m@gmail.com


Thanks & regards
Ramesh




Saturday, December 13th 2008 - 12:38:53 PM
Name: Beth Cole
E-mail address: tutukeb@wmconnect.com
Country?: usa
Type Of IBD: diverticulis
Type Of Surgery : permanent colostomy
Comments:Hi,Shaz!I am so glad thatI found this site..I have been feeling like I am the only person with this type of problems.I would really love to chat with you or someone.I have had 5 surgeries since Oct.2007...One of which i was home only 1 day after surgery and preferated and had to have emergency surgery..My biggest problem is that they cant seem to find the right products for me..My bags come loose all the time and the most stay on for 2 days. In my town there is only 1 ostomy nurse and she is new but does her best. I have been home from the hospital 2 weeks now after having been there 26 days..Pretty slow recovery right now.Anyway thanks again and hope to hear from you or someone soon...I live in West Virginia and I am 55years old Have a blessed Christmas...Beth
Saturday, December 13th 2008 - 08:25:57 AM
Name: Elise Lambert
E-mail address: Shimjung@aol.com
Country?: USA
Type Of IBD: Ulcerative Colitis
Type Of Surgery : ileostomy
Comments:I had ulcerative colitis from age 18 to 30 at that time I had to get a whole colostomy and now I have an ileostomy. The problems I have are: dehydration, low energy. I give myself a B12 shot once a week but it doesn't seem to be enough and I am not sure of the dosage.
I am an artist painter and have presently wrote and illustrated a children's book. I am researching about how to get it copyrighted and published. I am looking to chat with other ostomates to exchange info and ideas.
Saturday, December 13th 2008 - 07:39:52 AM
Name: Hannah Lawson
E-mail address: Han19law@gmail.com
Homepage URL: http://www.ucandkids.blogspot.com
Country?: United States
Type Of IBD: Ulcerative Colitis
Type Of Surgery : j-pouch
Comments:They took my colon in 2005. Got my j-pouch 3 months later. Had a few complications. But life is good, attitude is everything..and I'm glad to be rid of the sick colon! Good luck and thanks Shaz! I like your site!
Thursday, December 11th 2008 - 03:40:48 AM
Name: Alan
E-mail address: alanhwillson@btinternet.com
Country?: United Kingdom
Type Of IBD: Diverticulitis and IBS
Type Of Surgery : total colectomy with permanent ileostomy
Comments:This is a great site. Well done. I had my operation in june this year but they still can't seem to get the pouch fitting right and I am having leaks every 6 - 8 hours. Hope they get it right eventually!! Happy Christmas!!
Thursday, December 11th 2008 - 01:29:41 AM
Name: Lisa
E-mail address: lisa.brown@paradise.net.nz
Country?: New Zealand
Type Of IBD: Ulcerative Colitis
Type Of Surgery : Total Colectomy
Comments:Your page is awesome. I have had my ileostomy since January 2008, am supposed to have reversal as have had a J-pouch formed. Am considering keeping my ileostomy as had complications when doctor tried reversal. I am 39 and had Ulcerative Colitis for 17 years before surgery.
Tuesday, December 9th 2008 - 08:58:10 AM
Name: Daun Troncin
E-mail address: dauntroncin@yahoo.com
Country?: USA
Type Of IBD: divirticular abscess
Type Of Surgery : transverse colostomy
Comments:Shaz;
Your site and the C3life site have saved my sanity this year.
Just reading all the comments and experiences helped me so much. I have had successful reversal and now am healing from that. Three surgeries this summer have made me stay in more than usual. You have been my savior.
Thank you so much
blessings
delta
Monday, December 8th 2008 - 11:43:32 PM
Name: bostomy
E-mail address: tom_harrington2@yahoo.ca
Country?: canada
Type Of IBD: ?
Type Of Surgery : illeostomy,
Sunday, December 7th 2008 - 11:31:34 AM
Name: laurie
E-mail address: lauriearts@aol.com
Country?: unites states
Type Of IBD: ucleractive
Type Of Surgery : ileostomy
Comments:would love to here from you. I am 41 years old and had surgery this past april. will be going to get my rectum removed here dec 11th at cleveland clinic. i am keeping my bag and love it. life is good after 22 years of pain, running to the bathroom, and not eating.
Monday, December 1st 2008 - 03:59:01 AM
Name: Glenn Baldwin
E-mail address: jib@netspace.net.au
Country?: Australia
Comments:Shaz.
There should be an award for your effort. 10 years ago I was a lost parent with a child with Hirchsprungs disease.
10 years on, I am still appreciative of what your site did for me back then.
You are one wonderful person.
You gave support by email in the hard times, for which I will never forget. But most importantly you are holding a site open that gives everyone a place to research.

You are a legend, I admire you. You are a very special person.
Thursday, November 27th 2008 - 09:14:25 PM
Name: Shelly
E-mail address: shelly410@charter.net
Country?: USA
Type Of IBD: dont know what this means
Type Of Surgery : temp colostomy
Comments:I was looking on the net for support groups or sites with others who have a colostomy. Your site is great...thank you!
Monday, November 24th 2008 - 03:04:34 PM
Name: Marilyn
E-mail address: mreichard7@msn.com
Country?: USA
Type Of Surgery : Colostomy
Comments:Very nice page! It's wonderful to have found other ostomates. Fantastic of you, Shaz, to take the time & interest to help others.
I hope to get active in the site, and to make new friends.
God Bless.
m.
Monday, November 24th 2008 - 06:46:20 AM
Name: ernest federspiel
E-mail address: beibejones1@aol.com
Country?: usa
Type Of Surgery : colostomy
Comments:have had this for a years and eight months, have been struggling to find someone to talk to. thanks for having this page ,now maybe i can get some answers and get on with my life. bless you
Sunday, November 23rd 2008 - 03:31:49 AM
Name: Kristen R,
E-mail address: remingkm190@potsdam.edu
Country?: United States
Type Of IBD: Crohns
Type Of Surgery : Ileostomy
Comments:Wow! I love your page!!! This is exactly what I have been looking for! I am 22 and had to have an emergency ileostomy because of severe Crohns and a perforated bowel (in 3 places...wooo) This site is wonderful, thank you so much! I am glad to find a place where I can relate to everything. I am having the rest of the rectum removed in a few months to make it a permanent ileostomy, and I am happy to see that there is a site that shows the joys of having a "normal" life with a stoma.
Friday, November 14th 2008 - 02:10:54 AM
Name: Kristen R,
E-mail address: remingkm190@potsdam.edu
Country?: United States
Type Of IBD: Crohns
Type Of Surgery : Ileostomy
Comments:Wow! I love your page!!! This is exactly what I have been looking for! I am 22 and had to have an emergency ileostomy because of severe Crohns and a perforated bowel (in 3 places...wooo) This site is wonderful, thank you so much! I am glad to find a place where I can relate to everything. I am having the rest of the rectum removed in a few months to make it a permanent ileostomy, and I am happy to see that there is a site that shows the joys of having a "normal" life with a stoma.
Friday, November 14th 2008 - 02:10:17 AM
Name: httpd
E-mail address: manager58429189@ballyfinance.com
Homepage URL: http://homeimprovement.hit.bg
Country?: Engl
Comments:sdewqd
Thursday, November 13th 2008 - 10:22:23 PM
Name: Nick Trubov
E-mail address: ntrubov@ipa.net
Country?: USA
Type Of IBD: cancer (rectal)
Type Of Surgery : removal and ostomy
Comments:Shaz,

I just returned from reading your great "history" of ostomies. I look forward to being a regular on the ostomy group whose WWW site is being "fixed" as I type.

Thanks,

NT
Thursday, November 13th 2008 - 02:04:28 AM
Name: mela
E-mail address: piotrkows2@aol.com
Homepage URL: http://yahaoo
Wednesday, November 12th 2008 - 10:09:09 PM
Name: mela
E-mail address: piotrkows2@aol.com
Homepage URL: http://yahaoo
Country?: us
Type Of IBD: ostomy
Type Of Surgery : colosmy
Comments:i am regestered with you
Wednesday, November 12th 2008 - 09:52:37 PM
Name: graeme sheriff
E-mail address: graemesheriff@hotmail.co.uk
Country?: england
Type Of IBD: UC
Type Of Surgery : LARGE BOWEL REMOVEDI
Comments:first let me say what a great site i used to feel very alone when i first got diagnosed with colitis that was nine years ago ispent alot of time in hospitals seeing specialists and doctors none of my friends or work mates had heard of this very horrible disease so iused to make ajoke out of constantly running to the toilet but it eventually got to point when i got very ill and i suppose depressed two years ago i had my bowel removed it made such a difference to my life i could take my kids out, take them to football matches go campingand even go swimming before my surgery this would of been impossible twelve weeks ago i had to have my rectum removed because i was still bleeding inside thats the final stage of what has been adifficult nine years but because of the surgery i feel i can live again and after reading some of the stories irealise i am not alone thanks shaz good luck and good health to everybody who reads this web page
Wednesday, November 12th 2008 - 07:25:41 PM
Name: joanna middleton
E-mail address: joannarachel@hotmail.co.uk
Country?: uk
Type Of IBD: perianal chrons
Tuesday, November 11th 2008 - 05:13:12 AM
Name: Joyce Cafasso
E-mail address: Guidoswife@Verizon.net
Country?: USA
Type Of IBD: Colostomy
Type Of Surgery : Rectal Cancer
Comments:I had my surgery in 1986 and still going strong. I also had 5 weeks of radiation and no return of the cancer.
I do have a problem with occasional Intestinal Blockages and have to go to the ER to get treatment. ):-(
I also irrigate every 2 to 3 days which seems to help but then I get a blockage and I'm not sure what I ate that did it.
Monday, November 10th 2008 - 06:13:31 AM
Name: Joyce Cafasso
E-mail address: Guidoswife@Verizon.net
Country?: USA
Type Of IBD: Colostomy
Type Of Surgery : Rectal Cancer
Comments:I had my surgery in 1986 and still going strong. I also had 5 weeks of radiation and no return of the cancer.
I do have a problem with occasional Intestinal Blockages and have to go to the ER to get treatment. ):-(
I also irrigate every 2 to 3 days which seems to help but then I get a blockage and I'm not sure what I ate that did it.
Monday, November 10th 2008 - 06:12:39 AM
Name: Shelley Quinn-Becker
E-mail address: sqb@charter.net
Country?: USA
Type Of IBD: Ulcerative colitis
Type Of Surgery : Ilieostomy
Comments:I have been reversed for about a year and a half; still have fears...so you are not alone.
Thursday, November 6th 2008 - 09:02:46 AM
Name: DAVID CHALK
E-mail address: dachalk3@tesco.net
Country?: U/K
Type Of IBD: U/COLITIS
Type Of Surgery : COLOSTOMY
Comments:I WAS THAT ILL AND DEPRESSED,I WANTED TO DIE.
NOW WITH MY BAG,THE WORLDS MY OYSTER..
Tuesday, November 4th 2008 - 10:13:27 PM
Name: JEANIE HUDMAN
E-mail address: top_klass@yahoo.com
Country?: USA
Type Of IBD: cancer
Type Of Surgery : colostomy
Comments:Hey Shaz! enjoyed your site, this is a surgery very soon to happen, have tried all sorts of 'remedies', have pretty radical radiation damage, and at the end of my rope, had been nice to see how, and hear how someone else is coping. Thanx, for taking the time to do this. Your site, does help this to not be so 'scarrey'!
so thanx again, and I hope you are doing well. xoxo Jeanie
Tuesday, November 4th 2008 - 04:58:39 AM
Name: JEANIE HUDMAN
E-mail address: top_klass@yahoo.com
Country?: USA
Type Of IBD: cancer
Type Of Surgery : colostomy
Comments:Hey Shaz! enjoyed your site, this is a surgery very soon to happen, have tried all sorts of 'remedies', have pretty radical radiation damage, and at the end of my rope, had been nice to see how, and hear how someone else is coping. Thanx, for taking the time to do this. Your site, does help this to not be so 'scarrey'!
so thanx again, and I hope you are doing well. xoxo Jeanie
Tuesday, November 4th 2008 - 04:58:05 AM
Name: Linda Fleming
E-mail address: lindafleming@att.net
Country?: USA
Type Of IBD: breech of small intestine from medications
Type Of Surgery : iliostomy
Comments:Had what I thought was a simple appendectomy in March of 2008. Turned out to be a breech of small intestine due to chronic use of steroids and other meds for RA, dermatomyositis, and myasthenia gravis(spelling?). Was in the hospital for 7 months and am now home with 24 hour care that is costing a lot, but I have gained weight (72 pounds to 110) Am hoping to get back to work in the New Year to pay off my debts. In all, I feel blessed and happy. My book is almost done and my life is filled with wonderful people. Thanks for listening! Goodnight! By the way, I also named my iliostomy. "Junior"
Monday, November 3rd 2008 - 01:39:50 PM
Name: Adam Kelley
E-mail address: adamjameskelley@gmail.com
Country?: USA
Type Of IBD: Crohn's
Type Of Surgery : bowel resection
Comments:Hi Shaz
I came across your site while doing research on my new ileostomy (2 months old now). My doctor's say it's reversible but, it's still pretty scary. I love that you named your ostomy; that never would have occurred to me. Just wanted to thank you for sharing your story. It makes it easier for us newbies to hear about others with ostomy experience.
Thanks again
~Adam
Sunday, November 2nd 2008 - 06:54:21 AM
Name: Loretta C. Pincent
E-mail address: cpinsec632@rogers.com
Country?: Canada
Type Of IBD: Colorectal Cancer
Type Of Surgery : Colostomy
Comments:Scheduled for surgery in 3-3 weeks...scared to death and looking for any/all the support I can get from people like yourself who have 'been there-done that'...

I am thankful for this Site and good supportive people like yourself.

I will be visiting quite often after my surgery.

..LP
Sunday, November 2nd 2008 - 01:26:12 AM
Name: Lucy Konradi
E-mail address: lkonradi@swbell.net
Country?: USA
Type Of IBD: Colostomy
Type Of Surgery : Removal of rectum and sigmoid colon
Comments:Dear Shaz:

I just read your wonderful page regarding the ileostomy you've been living with for such a very long time. Your attitude is inspiring, to say the least.

In my case, I was diagnosed with a rectal tumor in June, 2007, had surgery to remove it and its lymph nodes in July, 2007 and by the time I could get to the oncologist who was to put into action a treatment plan of chemo, the cancer had gone from stage 1 to 3 and had metastasized to my lung. A good size tumor was then removed from there and I finished two rounds of chemo about 3 weeks ago. The least CT and PET scans showed no further development of tumors and, for the moment, I am in remission.

Radiation was unavailable to me for this cancer go-round since I had the maximum rads possible when I was treated for a stage IV cervical cancer in 1994-5-6. My doctor had little hopes for me then but, here I am, still kicking around and am a joyous and relatively happy 75 year-old, delayed-development "teen-ager"...... or so I'm told.

I simply cannot relate to other 75 year olds-- they all seem to act so "old" to me!

Anyhow Shaz you are an inspiration and I'm so glad I discovered you on my latest google-ing around. :)

Lucy Konradi
Saturday, November 1st 2008 - 03:09:50 PM
Name: Irene
E-mail address: ikw99@aol.com
Country?: USA
Type Of IBD: Ulcerative colitis (for 15 yrs)
Type Of Surgery : Ileostomy (1985)
Comments:Shaz...
I was fascinated by your story, and I must say we have more than one thing in common: 1) the ileostomy, and (2)a positive attitude. I fully agree that Attitude is the
making or breaking ingridient in life. So, for now let me wish you the best. God Bless you and yours.
Friday, October 31st 2008 - 01:21:33 PM
Name: Brenda O'Neil
E-mail address: jjoneil114@Comcast.net
Country?: USA
Type Of IBD: Ileostomyous /and descending
Type Of Surgery : Cancerous polyp
Comments:I have been looking for a support group in my area for a few months to no availi so when I came across this site I became excited to know that there are other people with the same problems who are willing discuss it with other people. In December of 2007 I went in the hospital to have my polyp removed which was attached to my stomach side. My two day surgery became a one month stay and three operations later. I'm 59 years old and I wasn't quite ready for this change. While in the hospital I lost 49 pounds,which was a good thing. Because I am a diabetic it took eight months for my incision to heal. My husband and I have had some funny episodes and some very depressing ones. We're dealing with it, but with the support of my husband , sister and family I know I'll make it.
Friday, October 31st 2008 - 12:17:26 AM
Name: fedrick
E-mail address: adrianfedrick@bellsouth.net
Type Of Surgery : ileostomy
Comments:fistula repare didnt work i died three times they said had a colostomy first that messed up then to save my life they placed a ileostomy on my side
Friday, October 24th 2008 - 07:25:28 PM
Name: Sue Rizvi
E-mail address: sahr786@msn.com
Country?: usa
Type Of IBD: cancer
Type Of Surgery : ileostomy
Comments:I am considering having my ileostomy reversed but would still have my colon. Since I had the ileostomy due to cancer and it was given while my colon healed. I woke up to find out the durgeion removed my rectum. Now I have the option to keep the ileostomy or have it reversed. But I would still have a colon and the possibility of cancer returning to the colon. Help!
Thank you for your help.
Thursday, October 23rd 2008 - 02:26:17 AM
Name: Katrina Whitcher
E-mail address: wombag@googlemail.com
Country?: uk
Type Of IBD: Uncontrolled Crohn's Disease
Type Of Surgery : Abdominoperineal Excision of Rectum (APER)
Comments:HAD CROHN'S FINALLY DIAGNOSED IN AUGUST 2000, AFTER SYMPTOMS BEEN AROUND FOR YEARS, IGNORED BECAUSE BEING LADY IT WAS ALL TO DO WITH PERIODS!!! HAD TEMPORARY ILEOSTOMY IN FEB 2001, TO GIVE MY LARGE BOWEL A REST THEN TREATED WITH INFLIXIMAB, HAD A HERNIA BEHIND ILEOSTOMY SO I NEEDED IT TO BE REMOVED,IN MARCH 2003. I HAD CROHN'S THAT WOULD NOT BE CONTROLLED PROPERLY WHERE I NEEDED TO HAVE A HOSPITAL STAY OF 10 WEEKS THAT CULMINATED IN A LOOP COLOSTOMY IN JUNE 2005. I THEN STARTED TO SUFFER FROM PROBLEMS WHERE THE COLOSTOMY BEING A LOOP COLOSTOMY IT MEANT THAT I STARTED TO POOH IN MY BAG BUT AT THE SAME TIME, I WAS STILL POOHING FROM MY RECTUM AS WELL AS BLEEDING AND IT WAS GOING TO TOILET UPTO 20 TIMES EACH DAY. THEN IT CULMINATED IN ME HAVING TO HAVE AN ABDOMINOPERINEAL EXCISION OF RECTUM (APER), WITH A PERMANENT COLOSTOMY AFTER THEY TOOK AWAY MY COLON!!!! THIS WAS DONE ON 10TH DECEMBER 2007, WELL THEN I CAUGHT MRSA IN MY BLOOD AND BOTH OF MY OPERATION SITES, SO I WAS IN HOSPITAL ALL THROUGH CHRISTMAS AND NEW YEAR, I AM STILL TRYING TO RECOVER FULLY FROM THE OPERATION AT THIS TIME!!!! THANK YOU FOR READING MY LITTLE LIFE STORY
FROM KATRINA
Thursday, October 23rd 2008 - 02:26:13 AM
Name: hugh o donnell
E-mail address: HOD_05@HOTMAIL.COM
Country?: IRELAND
Type Of IBD: FAP
Type Of Surgery : ILLEOSTOMY
Comments:HAVE FAP SINCE I WAS 14 HAD MY ILLEOSTOMY IN 1998 AT THE AGE OF 22 WHICH WAS HARD AT THE TIME ,ITS NOW 10 YEARS ON AND I HAVE LEARNT ALOT IN DEALING WITH FAP BUT SINCE I LIVE IN IRELAND NOT MANY PEOPLE LIVE WITH FAP IN IRELAND SO I WOULD TO HEAR FROM PEOPLE WITH FAP AND LOVE TO HELP PEOPLE WHO ARE GOING THRU THE SAME AS I DID.
Wednesday, October 22nd 2008 - 03:48:55 AM
Name: Marisol Gloriani
E-mail address: marisol_gloriani@yahoo.com
Country?: Singapore
Type Of Surgery : Ileostomy
Comments:Good to know I'm not alone ..it must have been hard for you, too ..at the start ..but we're are still blessed with ever supporting family ..but mine is not permanent . I will be having my 2nd surgery by November i went thru 8 sessions of chemotherapy and 6 weeks Radiation because mine was considered cancer of the colon stage III
Tuesday, October 21st 2008 - 08:17:53 PM
Name: Karen
E-mail address: karensrainbow4@hotmail.com
Country?: USA
Type Of IBD: U.C.
Type Of Surgery : Ileostomy
Comments:Hello Shaz and fellow Pouch People :)
I admire those with positive attitudes, and pray for those who are fearful, suffering or angry. I have had my ostomy for 21 years, and I just turned 42. I know how hard it is to be young and sick, and dealt with U.C. for 5 years, until my blessed surgery. Oscar and I do well together. He causes no troubles, and I find staying fit, exercising daily, and eating healthy keeps us both well and in good shape. I am a vegetarian, I lift weights, do yoga, SCUBA dive, swim, and even wear a bikini (with a high waist bottom. I travel, shop, and enjoy life to it's fullest. The ostomy saved me - and I will treat each day as a blessed gift. I do hope you can all do the same. Best wishes, dear ones.
Tuesday, October 21st 2008 - 06:44:23 AM
Name: Hulda Kristín Valgarðsdóttir
E-mail address: huldakv@simnet.is
Country?: Icland
Type Of Surgery : Ileostoma
Monday, October 20th 2008 - 08:04:57 PM
Name: Estelle Winchester
E-mail address: estellewinchester@hotmail.com
Country?: Australia
Type Of IBD: Bowel Ca
Type Of Surgery : Resection and Colostomy
Comments:
I was very inspired by how you managed such huge surgery at such a young age. I am 65 and recently had my plumbing rearranged. I have found it very tough going, indeed.

May your life be full and joyous - you really are "something else". Some guy is gouing to "land" a very special woman.

Regards.
Estelle
Sunday, October 19th 2008 - 04:46:57 PM
Name: heidi hess
E-mail address: hess-vesbeck@web.de
Country?: Germany
Type Of IBD: Ulcerative Colitis
Type Of Surgery : Kock Pouch
Comments:Hi, Shaz!
I am very glad that my long-time friend in USA, Janet, told me about your side.
H i s t o r y :
I got to know about the colitis when I was 17. I had to be operated in the age of 27. I think, I do not have to tell you how difficult it was to say `yes´ to this special operation.. ( no one of my neighbours, friends, kollegues knows about it). `No! You can ask me again when I am 60!´, I told my doctor in Hannover, Germany. But it HAD to be done (I weighed 35 kg by then..., I am 1,67 m tall! and 60 kg is normal). So I got a `normal´ ileostomy for 2 years.
K o c k P o u c h:
Then I went to Gothenburg in Sweden, where I met the wonderful!!! Prof. Kock. He operated me in `Carlanderska Sjukhemmet´( Carlanderska hospital).
Since these days, in January 1979, I celebrate a second birthday !!! Yes, I do!
I have NO! problems with the Kock Pouch at all. There is no better operation than this! It is absolutly continent and I just only go 3 times/day to the toilette, even less when we are on a journey.
I, myself, sent about 30 patients to Prof. Kock and they all are happy!
S t o n e s ( facel stones ):
I heard that VERY few patients have problems with stones. I have THE cure for it! Ask your doctor about a medicine for the gall liquid! The boddy cannot get it back as we do not have the great intestine anymore. So we need the help of some meds. In the moment I take `Vasosan´, by Dr. Felgentraeger, Germany. It is a colestyramin and in the first place it is made for people who have too much colestrol in their blood, but for our purpose it helps as well. It is perfect!
B e n d C a t h e t e r :
Something else: There are no bend!!!! catheters anymore on the market. If you need them, like I do, write to:
Frau und Herr
Marianne und Klaus Paschke
Peterstr. 9
66424 Homburg
Germany
They still produce them.
Believe me! It took me a long time and many phone calls to find these people.

If I can help someone, do write me a mail. B U T !!!! My biggest problem>>> I have only very little time! VERY little!
Your Heidi
Saturday, October 18th 2008 - 10:55:29 PM
Name: Julie Lyons-Vague
E-mail address: lyons-vague.julie.m@edumail.vic.gov.au
Country?: Australia
Type Of IBD: Bladder Cancer
Type Of Surgery : Ileal conduit
Comments:Hi Shaz,
Not many urostomates here. I live in country Victoria so not much support around. I'm doing really well though in the last 7 months. Cheers Julie
Friday, October 17th 2008 - 05:46:30 PM
Name: mela
E-mail address: piotrkows2@aol.com
Country?: u.s.
Type Of IBD: colostomy
Type Of Surgery : part of large intestine removed
Comments:Hi Shazs
My name is mela i been looking for a site like yours. I see i am not the only one the problems is i was operated only 2months ago.And was told nothing and i am learing on my own I keep asking for a support in my area N.C, but no luck please help me .I still feel sick not ony do I have a colomy I also have RA.very bad. I need to know how often do you remove the pouch. and when do you become regulated Iam tied walking with full pouch.

ThankYou for listening
mela
Oct 15 2008
Wednesday, October 15th 2008 - 11:56:10 PM
Name: Tara Marino
E-mail address: tara.marino@hotmail.com
Country?: US
Comments:I am a student nurse looking for resources for patients that have new ostomies when i found your site. i will be sure to pass it on!

Thank you!
Wednesday, October 15th 2008 - 12:36:54 PM
Name: Linda
E-mail address: ltristram@yahoo.co.uk
Country?: England
Type Of Surgery : Illeostomy
Tuesday, October 14th 2008 - 10:13:54 PM
Name: Sandy Gordon
E-mail address: packrats@wctc.net
Country?: usa
Type Of IBD: ulcerative colitis
Type Of Surgery : illeostomy
Comments:I have had my ileostomy for 33 years. I am very pleased with the results of my surgery. I was sick for 8 years with uc and I am thankful for my life as an ostomate.
Tuesday, October 14th 2008 - 09:08:33 PM
Name: Anita Iannuzzi
E-mail address: anitaeye83@optonline.net
Country?: USA
Type Of IBD: Ulcerative Colitis
Type Of Surgery : Ileostomy
Friday, October 10th 2008 - 06:44:30 AM
Name: John Simmonds
E-mail address: samsimmonds@bigpond.com
Country?: Australia
Type Of IBD: Ulcerative Colitis
Type Of Surgery : Ileostomy?Failed J Pouch
Comments:Well Done Shaz for putting this together. It is always great to read about other ostomates and to be assured that we are not alone with this curse. I welcome any persons comments if you too have experienced a failed "J" pouch as yet I have not found anyone else.
Thursday, October 9th 2008 - 02:15:43 PM
Name: Lee Walden
E-mail address: mlwalden@comcast.net
Country?: USA
Type Of Surgery : Colon removal
Comments:I appreciated your comments about a positive attitude. I am just getting acquainted with my stoma. My surgery was just seven weeks ago. I may give it a name, like you did.
Wednesday, October 8th 2008 - 07:12:42 AM
Name: Debbie Cianci
E-mail address: josephine_515@yahoo.com
Country?: usa
Type Of Surgery : colostomy
Comments:I'm so glad I found Shaz's Pages.I had my surgey March 27th 2008, Had another one April 7th 2008,it took time for me to adjust to it, thanks with the help of my friend Ana. I was in the hospital for 23 days she was with me evey day,even when I went home,she came every day,she taught me how to put on my colostomy bag,went to the wound clinic and all my doctor appointments with me. I,m learning to live with it. Thanks to her. Now your on my favorites. Looking foward to following up on your site.
Tuesday, October 7th 2008 - 01:12:48 PM
Name: Dan tobar
E-mail address: benbolt8@aol.com
Country?: USA south texas
Type Of IBD: colitis
Type Of Surgery : ileostomy
Comments:Had mine @ 18 Iam now 41 ola my friends
Tuesday, October 7th 2008 - 12:17:24 PM
Name: Jane Reynolds-Tate
E-mail address: srt@uwclub.net
Country?: United Kingdom
Type Of IBD: rectal cancer
Type Of Surgery : resection
Comments:Hi Shaz, My dad has just had a resection leaving him with a stoma and bag. He is 77 years old. His operation was 3 weeks ago. He is having problems wth sever tummy pains and vomiting. Reading your letters and looking at other sites on the internet i have discovered that a few patients do have these symptoms. My dad is so dehydrated and weak and looks so poorly. His stoma is working now hopfully he will pull through. He is on a rehydration drip and special food drip. I want him to come through this so much. THank you for your site and information it helps alot.
Sunday, October 5th 2008 - 07:26:37 AM
Name: Jamie Gambino
E-mail address: aldinesxychica@yahoo.com
Homepage URL: http://www.myspace.com/xxjaylynnxx
Country?: US
Type Of IBD: Ulcerative ColItis
Type Of Surgery : ileostamy
Comments:Hello everyone, im so glad I found this site, wish i could have found it a little sooner. I had my ileo surgery a week after my 18th birthday and was already in the hospital 2 weeks previous so my whole ordeal was pretty depressing for me. not saying that its the easiest thing in the world to go thru otherwise but i just felt like that should have been a good peek in my life and there i was layin in a hospital bed sick as a dog. lol but im sooo much better now. I still have my days when i think about my scars i have and the scars to come in the next few weeks for my Jpouch surgery but im sure i will get used to those also. i have a great family and great partner whos been there through it all and still makes me feel like im his everything on the days when all i can see or think about is my flaws. ive been looking for sites like these because as much support i get from them it would still be nice to talk to and hear from other people who are actually going thru the same thing or that have in the past. u can contact me on either addresses i would really love to hear from you all. thanks!

Jamie Lynn
Saturday, October 4th 2008 - 05:40:38 AM
Name: Donna B
E-mail address: donnabenson31@yahoo.co.uk
Country?: England
Type Of IBD: Familial Adenomatous Polyposis
Type Of Surgery : Ileostomy
Comments:I was diagnosed with FAP in 1996 and had surgery in 1997 aged 16. I originally had the ileo anal pouch but due to major complications-the blood supply was cut to the pouch causing it to die and developing gangrene, which led to further surgery to create an ileostomy. Which later became permanent. I call my stoma "Stevie!!!" Although I had symptoms before I was diagnosed with FAP I wasn't in any pain, but now I am in constant pain as a result of scar tissue and nerve damage etc due to many many operations. It would be lovely to chat to fellow ostomates and people who also have FAP from around the world.
Fantastic site!!
Thursday, October 2nd 2008 - 02:49:21 PM
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