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Colostomy Contact List - Page 1
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16 September 2003
Name: Dahling
Email: dahling_2u@yahoo.com
Age: 46
Country: USA
Surgery: Colostomy
IBD: Absessed Polyps
More Info: My sweet 79 year old mother has had a colostomy since 1996. She is living with my husband and myself. It is an experience changing into the caregiver role from being the daughter. So in addition to the problems of aging and such there is the "Stoma". I am trying to find out as much information as I can so I can help my Mom.
17 June 2003
Name: Lisa
Email: juskay@shoalhaven.net.au
Age: 32
Country: New South Wales, australia
Surgery: Colostomy
IBD: CD
More Info: i love to help and meet new ppl in the same situation as myself feel free to email me.
6 June 2003
Name: Terry
Email: Tkent48@aol.com
Age: 55
Country: Panama City, Florida, USA
Surgery: Colostomy
IBD: Cancer
More Info: I was diagnosed with colorectal cancer in Jun 2001. Had surgery in October 2001 at MD Anderson and was left with a permanent colostomy. This was devastating to me and it took a long time to adjust...if you ever really do. I had radiation and chemo and am now cancer free. I have been irrigating for about two months now and this has really made a difference in my life. I feel very confident now and only wear a stoma patch. Would love to chat with someone who irrigates and can give me some pointers. Would be willing to talk with anyone about their/my experiences with cancer.
21 May 2003
Name: Valmae Greenup
Email: vgreenup@bigpond.com
Age: 51
Country: Sydney, Australia
ICQ:227006711
Surgery: Colostomy
IBD: Cancerm Radical Bowel
More Info: I had my surgery in 1998 and I have lost just about every thing to the huge cancer I had. I would love to chat to other women who have a Colostomy.
17 May 2003
Name: Nurse Carol
Email: nursecarol42@aol.com
Age: 61
Country: Eureka, California, USA
MSN: LeeLaLa@hotmail.com
Surgery: Colostomy
IBD: Cancer
More Info: My husband was diagnosed with colon/bladder cancer with metastasis to the liver. He began Chemo right after surgery and is tolerating that very well. The colostomy has been our biggest adjustment. He does not do any of his own care with it. I am used to working full time in a large medical office so this is very different for me to stay home. I am new with the computer but found this site to be so helpful.
29 April 2003
Name: Lea
Email: LeeLaLa@hotmail.com
Age: 26
Country: Portsmouth, UK
MSN: LeeLaLa@hotmail.com
Surgery: Colostomy
IBD: CD
More Info: Hi everyone. I'm a 26 year old single outgoing girlie who lives in the UK and have had my colostomy since January this year. Would like to chat to anyone who can make me laugh!
25 April 2003
Name: Kathy Gonzalez
Email: kat92458@yahoo.com
Age: 44
Country: Kansas City, Missouri, USA
Surgery: Colostomy
IBD: CD
More Info: I have had Crohns Disease for 25 years. November of 2002 I had colostomy surgery. In the past I have had 18 surgeries. If I can help some one in any way I would be more than happy to.
30 March 2003
Name: Marian
Email: mkmikels@evenlink.net
Age: 55
Country: USA
AIM: MarMkls
Surgery: Colostomy
IBD: Colostomy to a fistula
More Info: My first time at this but I really would like to talk to someone else who has gone through the same thing as I. This all happen last year. Jan. went in for an incisional hernia repair and came out with colostomy and still have my hernia. Went back in hospital for reversal of colostomy and ended up with fistula and I still have my hernia only larger. It's now mid March a year later and I still have fistula with hernia. Been having lower back pain. Just had surgery on my 12th vertebrae for a compressed fracture. If anyone is out there with similar problems, please contact me. "With God on our side, who can be against us." I know He has been with me through all of my trials and has been most faithful and for that I praise Him daily.
7 February 2003
Name: Teresa
Email: v12pop@aol.com
Age: 39
Country: Florida, USA
MSN: feelingood2@hotmail.com
Surgery: Colostomy
IBD: CD
More Info: I am 39 years old and was diagnosed with Crohn's at 34, I have had 2 lower bowel resections, and currently have a rectro-vaginal fistual that could not be repaired with three surgeries and was told that it would not heal without a colostomy. I feel like I am going out of my mind. I know things could be worse and I thank God that they are not at this stage anyhow. I would love to chat with others that feel somehow lonely and I do not think that any of my family really understand the mental toll this has taken on me. So maybe someone out there with these feelings would like to chat. I would appreciate any correspondence with someone who has beat the mental challenge of this. Thanks for reading and God Bless.
14 March 2003
Name: Debbie
Email: DEBBIEME@AOL.COM
Age: 42
Country: Staten Island, New York, USA
Surgery: Colostomy
IBD: CD
More Info: Hi, I'm Debbie and have had Crohns Disease forever (it seems). I have had a colostomy since March of 1995. I would like to chat with others; I'm a good listener and give pretty good advice. Ostomates need to be brought out of the dark, not looked at like we will break.
24 January 2003
Name: Marguerite Smith
Email: nsmith69@bellsouth.net
Age: 46
Country: Nashville, Tennessee, USA
MSN: feelingood2@hotmail.com
Surgery: Colostomy
IBD: ruptured bowel
More Info: I had emergency surgery on December 30, 2002 for a ruptured bowel and now have a colostomy. I'm told they will start running barium studies in late March to see how things are doing to determine a date for reconnection. But for now I am going through the adjustment period and at times have really low days, and other days feel like I have everything under control. What is frustrating me, is that I have a retracted stoma, and I am so sore around it, I would love to talk with someone who also has a retracted stoma and get any helpful tips. This is my first experience on the computer with this situation, and I have never been in chat rooms or any type of support group so please forgive me if I seem a little slow at all of this.
24 January 2003
Name: Darcey Miner
Email: feelingood2@hotmail.com
Age: 40
Country: Vancouver, British Colombia, Canada
MSN: feelingood2@hotmail.com
Surgery: Colostomy
IBD: CD
More Info: I have had crohns for 28 years, my colostomy for 12. Have recently separated from wife [2 years]. Now I'm feeling lonely and have fear of rejection from people [ladies].
22 January 2003
Name: Stacey
Email: rt1st2@perryco.net
Age: 39
Country: Arkansas, USA
Surgery: Colostomy
IBD: fecal incontinence sphincter muscle injury after giving birth
More Info: I need a colostomy I guess or stay home and close to the bathroom. I have no life really. I have fecal incontinence. When I gave birth to my first child,, the doctor went too far back to my sphincter muscle. It's damaged, tried two surgeries in the past they didn't work. The doctor said colostomy if I want one. I'm scared to death! Will it look yuck? I like to look sexy. I love clothes, dress up for my husband. (Sex) What will he think of my body? I just keep avoiding a colostomy for years. My fecal incontinence is bad I can't go on trips, etc. I'm losing my mind. I'm at the end of the rope.
17 January 2003
Name: German Altgelt
Email: g_altgelt@sbcglobal.net
Age: 31
Country: San Jose, California, USA
Surgery: Colostomy
IBD: Cancer
1 January 2003
Name: Jennylee
Email: honeybear1461@hotmail.com
Age: 41
Country: Adelaide, South Australia
MSN: honeybear1461@hotmail.com
Surgery: Colostomy
IBD: Diverticulitis
More Info: I had emergency surgery on 16th July 2002, from a perforated colon and peritonitis, I had 12" of bowel removed. It is only a temporary colostomy and should be reversed in February, 2003. It hasn't been hard getting used to a colostomy and I am more than willing to answer any questions anyone has. Life is good, so I live it to it's fullest.
26 November 2002
Name: Linda
Email: lindacraig@optusnet.com.au
Age: 43
Country: Perth, Western Australia
Surgery: Colostomy
IBD: Cancer
More Info: My 73 year old mother recently had a colostomy after three cancer ops in four years and now has a permanent stoma. She is experiencing problems with the pouches not sticking properley,(maybe due to extreme heat condtions here in West Australia) and therefore is having leakage problems. She also has constant diarrhoea. This is all very distressing for her and any feed back from people with helpful ideas would be gratefully accepted.
17 November 2002
Name: Patty
Email: mpdj02@bellsouth.net
Age: 47
Country: Adairsville. Georgia, USA
Surgery: Colostomy
IBD: Emergency Bowel Perforation
More Info: I am supposed to have a reversal done to rid me of my colostomy bag. I have lupus and brain vasculitis. Drs say as long as I do not have to increase my my prednisone or take that deadful cytoxin chemo again I should be alright. I have finally come to terms with living with the bag. I have some difficulty with it though, wants to leak alot of times and will go for months with no problem at all. My husband has been my full support and my bag is so awkward that I have never really changed it on my own, as most the time I am in pain with my other diseases I talked about. I have seen some talk about the revesals not being very cooperative and alot of folks run into trouble. Can any one guide me? Thank you
12 November 2002
Name: JoAnn
Email: joski@cox.net
Age: 28
Country: Rhode Island, USA
Surgery: Colostomy
IBD: Cervical cancer & recurrant cervical cancer
More Info: I was diagnosed with cervical cancer in Dec of 2001. I underwent a radical hysterectomy in Feb of 02, followed by radiation and chemotherapy. I just found out that the cancer has returned and that I need to go for the exenteration surgery; they plan to remove the tumor along with my bladder, part of my colon, possibly the rectum and who knows what else. I am very scared and the whole thing just sounds like a horror story to me (especially the colostomy and urinary conduit part). I am having trouble visualizing how I am actually going to live with all of this. I was wondering if anyone has a similar experience they could share with me.
31 October 2002
Name: Autodraw
Email: autodraw@shaw.ca
Age: 50
Country: Vancouver, Canada
Surgery: Colostomy
IBD: Cancer
More Info: I had surgery October 1, 2001, after a sudden diagnosis. Six months of chemo and radiation followed and I completed both in May of 2001. I learned to irrigate a few months ago which has made a dramatic improvement in my quality of life. Now I just have to keep passing those tests.
28 September 2002
Name: Gary
Email: alpha3@shaw.ca
Age: 73
Country: Canada
Surgery: Colostomy
IBD: Cancer
More Info: Have had my pouch since 17th August 2002 and am finally dealing with the changes in my life - they are not as bad as I anticipated certainly due to the wonderful help from my wife. I am also Type II diabetic and so diet plays a large role in our daily life.
It would be appreciated if I could talk to others who are sharing this condition
26 September 2002
Name: Connie
Email: nylilbit@webtv.net
Age: 54
Country: Atlanta, Georgia, USA
MSN Messenger: nylilbit@webtv.net
Surgery: colostomy
IBD: CD
26 September 2002
Name: Amber Jessamine
Email: chicletaj@hotmail.com
Age: 50
Country: Mesa, Arizona USA
MSN Messenger: chicletaj@hotmail.com
AIM: chicletaj@aol.com
Yahoo Messenger: chicletaj
Surgery: colostomy......reversed in December of 2001
IBD: Diverticulitis
More Info: If there are any questions I may help with please feel free to contact me. I had an emergency colostomy 18th July 2001 from perforated colon by diverticulitis. Peritonitis, septic etc. 8 inches of colon removed. 2 weeks in hospital. Had reversal 5th December 2001 and all is well. Thanks
24 September 2002
Name: Suzy Munson
Email: smunson@cfl.rr.com
Age: 51
Country: Cocoa, Florida, USA
Surgery: Colostomy
IBD: CD
More Info: I first had a temporary colostomy in 1982. One year later I had it made permanent. I have had surgery for a fistula since. All in all 20 years with a colostomy hasn't been bad. Life before was awful now I have a few minor problems due to the Crohns disease. I didn't go into a lot of detail but I've been through alot, mostly in the early years. If you want to write I'll be here. Sincerly, Suzy
7 September 2002
Name: Cheryl
Email: taxigrammie@yahoo.com
Age: 55
Country: Belgium
Surgery: Colostomy
IBD: Abcess and Fistula
More Info: I am a 51 year old female with a colostomy and a urostomy. This is the results of radiation treatments for cancer in 1978. I would like to chat with all other ostomates with one or two bags. I would like to hear a male's point of view on being an ostomate. I have been an ostomate for five years. I thank God everyday for just being alive. The only thing bad about bags is I can't find shoes to match. lol.
19 August 2002
Name: Jo
Email: jo.hub@swing.be
Age: 55
Country: Belgium
Surgery: Colostomy
IBD: Abcess and Fistula
More Info: My English is not quite fluent: I apologise. I had an abcess in the rectum and it burst both into the rectum and into the vagina, thus creating a fistula. After two failed surgeries (infection and recidive), I had a colostomy in March 2002. Perhaps, it is temporary but I'm far from sure, for the wound in the perineal area, due to surgery, is not quite healed yet. I'd like to be contacted by other ostomates, as there are no associations for ostomates in my country.
29 25 July 2002
Name: Tim
Email: tedgar@mindspring.com
Age: 37
Country: Pine Mountain, Georgia, USA
Surgery: Colostomy
IBD: Hirschsprungs Disease
25 July 2002
Name: Rick Staton
Email: stat5539@bellsouth.net
Age: 49
Country: Hendersonville, North Carolina, USA
Surgery: Colostomy
IBD: Due to pressure sore on buttocks
More Info: I have a sore on my bottom that wont heal because bowel movement keeps getting in it. My Dr. says colostomy is best. I hope so.
19 July 2002
Name: Roger L
Email: rlot1959@msn.com
Age: 43
Country: Northbrook,Illinois, USA
Surgery: Colostomy
IBD: CD
More Info: I have had Crohn's disease since 1981. I had surgery in early 1987 which was a temporary Colostomy, Six months later I was reconnected by attaching the Illiun to the remaining section of the sigmoid colon and have been reconnected ever since.
10 July 2002
Name: Mike Davieds
Email: mdavieds@aol.com
Age: 49
Country: Newport News, Virginia, USA
Surgery: Looking at a colostomy
IBD: Cancer
More Info: Hey everyone. Recently had a colonosocopy because of my age and family history and found out that one of three polyps is a cardenoid tumour. Further tests revealed no additional cancer but doc told me I'll need surgery and may need to wear a bag for the rest of my life!!! Got this great news yesterday and needless to say I've been in a daze ever since. I lead an active life (sailboat racing, surfing, weightlifting, etc.)and had hoped to enjoy these activities well into my 60's. Realize this procedure could change my life somewhat, just wondering how much. Appreciate any advise. Thx.
27 April 2002
Name: Carole
Email: carole700@msn.com
Age: 49
Country: Illinois, USA
Surgery: Looking at a colostomy
IBD: CD
More Info: I'm facing colostomy surgery for a recto-sigmoid Crohn's that has not responded to steroids, or Remicade. I'd sure like to hear how long I can expect to be out of work (I took only a week off after an abdominal hysterectomy 5 years ago). I have a desk job and am pretty motivated to get back to life after this surgery. Twenty years of having this condition has made me impatient to get back to being able to live more than 5 feet from a bathroom. I'd love to hear from anyone who's had a colostomy with IBD and how you're faring, especially if you've flared after the surgery.
26 April 2002
Name: William
Email: williampapat@AOL.COM
Age: 67
Country: Lawton, Oklahoma, USA
Surgery: Colostomy
IBD: rectum cancer
More Info: After surgery I am doing fine, only sore. Cannot sit too long at a time. It has been 2 months and the doctor said I am doing great. I still have sharp pains in my lower body but the doctor said was ok.
8 April 2002
Name: Michael
Email: mbecker1@kscable.com
Age: 53
Country: USA
ICQ: 147179787
Yahoo Messenger: mbecker8@yahoo.com
Surgery: Colostomy
IBD: Cancer
7 April 2002
Name: Richard
Email: grimes99@ifn.net
Age: 50
Country: E Bay, Northern California, USA
Surgery: Colostomy
IBD: Colo-Rectal Cancer
More Info: "Rachel's" birthday is April 17, 'been hangin around with the old bag for a year now. Recovery from surgery was interesting. I didn't really have E.T. support for the 1st 4-5 months. Mental recovery was very good!(ask me,I love to tell that one). I guess I've pretty much worked out most of the basic "do this, do that" stuff. Attitude is very good (from what people tell me) & I still brag that I can "go" standing up!
The only problems I still have is, a lot of pain on urination (bladder got fried w/ radiation) & I've got a Mucos Fistula ("double barrel"). The problem with this is I still get drainage from the rectum (not regular & inconsistent).
Love to talk, I am a giver, not a taker, but would like to know of any similar situations, or just talk.
15 Mar 2002
Name: Eva
Email: eva.gaebler@swipnet.se
Age: 52
Country: Sweden
Surgery: Colostomy
IBD: Cancer
11 Mar 2002
Name: Françoise Dufour
Email: fmcdufour@aol.com
Age: 46
Country: France
Surgery: Colostomy
IBD: Cancer
More Info: I have had my colostomy since April 2001. I irrigate me every two days. I don't speak English very well, if somebody knows French, please write me, I did not find in France one contact list as yours. I shall try to answer everybody, also in English.
11 Mar 2002
Name: Amie Thomas
Email: thomasamie@aol.com
Age: 23
Country: Oak Hill, West Virginia, USA
Surgery: Colostomy
IBD: Hirschsprungs Disease
More Info: My son, Adrian, is 4 months old, he is the one with the colostomy.
28 Feb 2002
Name: John Bushby
Email: JohnBEBushby@aol.com
Age: 56
Country: Leyland, Lancashire, UK
Surgery: Colostomy
IBD: Fecal Peritonitis
More Info: Reading through the experiences in the contacts list has made me feel rather humble as I seem to have got off lightly. I have had diverticulosis for some time and in April 2000 my bowel burst. Emergency surgery followed. There have been some additional complications but fortunately I must have the right genes and am still alive. My wife asks if there are any organisations to guide partners? (Quick compliment - she has been very supportive). If my/her/our experiences can help please contact us.
9 Feb 2002
Name: Cody and Caleb Sims
Email: LSims@CS.com
Age: 3 & 4
Country: Lonoke, USA
Surgery: Colostomy
IBD: Hirschsprungs
More Info: I am the parent of Cody and Caleb, they are both boys and has Hirschsprungs Disease. They both wore a colostomy one for 6 months and Cody for 9 months. They both have bowel problems still, Caleb has diarrhea and Cody has constipation - me and my husband have to irrigate him once a day, he developed ecrolitis and CDF and stayed in the hospital for three days last week, I would like to talk to other parents who need a little support or need someone to talk to, I helped a couple last week at the hospital to empty a colostomy and just to talk about it. I think it is a big challenge and would love to talk to anyone who needs some support
7 Jan 2002
Name: Mary Hughes
Email: maryhugh@au1.ibm.com
Age: 37
Country: Sydney, Australia
Surgery: Colostomy
IBD: Indeterminate Colitis
More Info: I am trying to contact people who have had a Colostomy bag. I do not suffer from IBD but my sister has had it for 5 years with no relief, i.e. it is always active to some
degree. She has been taking prendisone on and off but due to the side effects cannot continue to do so. I would like to speak to people who have had positive results and are now living with a Colostomy bag.
31 Dec 2001
Name: Margie
Email: msmith@ccisp.net
Age: 69
Country: Maryland, USA
Surgery: Colostomy
IBD: Cancer
More Info: I have colorectal cancer, have had 28 radiation treatments, chemotherapy, surgery and colostomy April 2000. Following surgery I had to have physical therapy to learn to walk
again due to damage to the femerol nerve in my left leg. 8 months of more chemotherapy. My surgery was at a well acknowleged hospital in Baltimore Md. I am seeking any individual who may have suffered femeral nerve damage from this type of surgery. The damage is permanent and I will never walk long distance again. I am able only to walk a very short distance before my leg fails, If you could email me with any info I would greatly appreciate your response or any help that anyone could give me. My greatest joy was running my dogs and now I cannot even walk them. The pain is almost unbearable at times and I am unable to sleep. I need all the support I
can get. Good luck to all my fellow colostomates.
22 Dec 2001
Name: Susan
Email: Summer58@aol.com
Age: 43
Country: Cincinnati, Ohio, USA
Surgery: Colostomy
IBD: diverticulitis/perforated bowel
More Info: My experience and comments are posted on the guest book. Would love to hear how others are coping when the surgery/illness came as a complete surprise as mine did. THANK YOU
24 Nov 2001
Name: Avril
Email: avrilmarl@freenet.co.uk
Age: 58
Country: Wallasey, UK
Surgery: Colostomy
More Info: I have had my Colostomy for about 3 years and would love to chat to someone in the same situation as me, as I do not know anybody else with an ostomy.
20 Nov 2001
Name: Susanne
Email: pobjoy@yahoo.com
Age: 37
Country: Sunbury, England
Surgery: Colostomy
IBD: Ovarian cancer + fistula
More Info: I love your site, there is so much useful information, and it feels really good to read other people's stories, too. Thanks! :)
20 Nov 2001
Name: Kiran
Email: kiranr@iafrica.com
Age: 35
Country: Cape Town, South Africa
Surgery: Colostomy
IBD: CD
More Info: I have had a colostomy since 1998. Three years later my surgeon is considering rejoining me since I have been symptom free. Does any person out there have any similar experiences? What are the chances or relapses on rejoining?
The other option is to stay as I am and to remove my rectum to avoid rectal cancer. Is this an option? If you can help, please contact me.
16 Nov 2001
Name: Kay Pearsall
Email: kfrog@2cowherd.com
Age: 61
Country: Campbell, California, USA
Surgery: Colostomy
IBD: Severe constipation/ruptured large colon
More Info: I see most of the info is for people up to 40. I just turned 61 and was strong and healthy until this year. I received my black belt in Tae Kwon Do at 60. After 5 1/2 months with a colostomy, I finally had the guts (pardon the pun) to surf for info! I am determined to get back into Tae Kwon Do for, possibly, second degree black belt-or at least to take classes and help with the instruction of the younger members. I'd love to talk to people!
24 Oct 2001
Name: Sandra
Email: SBonds@att.net
Age: 43
Country: Concord, North Carolina, USA
Surgery: Colostomy
IBD: ????
More Info: Don't know what kind of IBD I have. Like to know!This is new to me.
20 Oct 2001
Name: Sean
Email: mark@mscorer.fsnet.co.uk
Age: 8
Country: Coventry, England
Surgery: Colostomy
IBD: Imperforate Anus
More Info: Would like to be in contact with other children like me as I do not know anyone else who has the same kind of problems like me.
If you would like to use any of the images in these pages, please email me to get permission. Thanks.