Ileostomy Contact List - Page 6

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6 Dec 2001
Name: Geoff Landau
Email: geofflandau@hotmail.com
Age: 53
Country: London, UK
Surgery: Ileostomy Reversal
IBD: Familial Polyps
More Info: I was diagnosed as having cancer of the colon on December 2000.
I had nine operations over the following eighteen months including three illeotomies and two reversals - the less said about these the better!
I am slowly learning to live with if not to love my bag and if anybody has some advice or needs encouragement please contact me.

5 Dec 2001
Name: T McCarthy
Email: tmccarthy88@aol.com
Age: 38
Country: USA
Surgery: Ileostomy
IBD: CD
More Info: I would like to talk to anyone who is having skin problems. I have had my ostomy for 15 years, and am now having serious skin problems and I DON'T LIKE IT. Is there anyone who can help me with this? thanks.

5 Dec 2001
Name: Jennifer
Email: jsh51079@yahoo.com
Age: 22
Country: Arkansas, USA
MSN ID: jsh51079
Yahoo Messenger ID:jsh51079
Surgery: Ileostomy
IBD: UC

4 Dec 2001
Name: Patricia Donachy
Email: pbreldon@aol.com
Age: 56
Country: Blackburn, UK
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: I have had a ileostomy since 1967 aged 21 then. I was given only a few weeks to live so no choice really. I only weighed 4 stone.
Since then I have travelled extensively, however I could do with some advice please.
I am going to live in Texas, USA, early next year with my husband's job move. Whilst I am excited because I love the American people (I go skiing every year in the USA), I am also worried about obtaining supplies/equipment and also the cost. Of course here in England my equipment is free. Can anyone advise on where and how much?
Thankyou.

1 Dec 2001
Name: Lynda Davies
Email: lynda.brent@btopenworld.com
Age: 50
Country: Wakefield, West Yorkshire, UK
Surgery: Ileostomy
IBD: UC
More Info: I had my surgery in January of this year and I know that it was the best thing I could have done. I had suffered from UC for ten years and lost my job as a Community Carer because of it. I am very lucky to have a wonderful husband who understands what a total permanent ileostomy means to me - LIFE!

28 Nov 2001
Name: Shannon Nowlin
Email: nilwonfam@aol.com
Age: 31
Country: Syracuse, New York, USA
Surgery: Ileostomy
IBD: UC

25 Nov 2001
Name: Robbin
Email: shiesterha@aol.com
Age: 37
Country: Florida, USA
Surgery: Ileostomy
IBD: CD
More Info: I've had my ileostomy for almost a year now due to Crohn's Disease. I still have a hard time dealing with the ostomy and the skin problems that are associated with it. Any tips on people who have sensitive skin due to the wafer. Please feel free to email me, maybe I can help you.

25 Nov 2001
Name: Jayne
Email: jmsmogey2000@aol.com
Age: 27
Country: Essex, England
Surgery: J Pouch then an Ileostomy
IBD: Indeterminate Colitis
More Info: Had indeterminate colitis for 2 1/2 years before I had my large bowel removed and a J pouch constructed with temp ileostomy. I was fine but I continued to have abcesses and they finally found a fistula which was unable to be repaired. That is when I had another ileostomy. I was very ill for nearly a year because I had a wound on the outside caused by an undetected abcess following surgery. Thankfully in September this year after getting rid of the J pouch, Etna saved my life - the other two were Sally. I am now 10 1/2 weeks post op and doing well apart from a couple of infections.
I am proud to say I am an ostomist. Anything is better than everything I suffered - with having colitis, side effects of drugs, and the pain as most of you reading this will be able to understand. I would really like to get emails from anyone who is worried about surgery or anything to do with UC. It puts some reason to why I had it if I can help others. Hope this isn't too long. Would love to hear from women who have had been pregnant with an ileostomy. This a fantastic website!! Thankyou! Take Care!

22 Nov 2001
Name: Kerry Deane
Email: ladykmd@hotmail.com
Age: 25
Country: London , England
Surgery: thinking about an Ileostomy
IBD: Constipation
More Info: I would like some information on how Ileostomys change your life? I suffered with severe constipation for 2 - 3 yrs. Then my Dr decided that I should have a sub-total colectomy. I had the op in 1998 and since then my life has been a living nightmare.
Constant pains, toilet visits 10 times plus a day and basically my bowels lead my life. I now found out that I never needed the operation as my colon was ok so I had most of it removed for no reason. I am no longer constipated I just have the opposite - I can't stop going.
I am now faced with the choice of an Ileostomy or suffer in pain and discomfort for the rest of my life. The doctors can't do any more for me....
Please someone help as I am totally stuck and I don't know what to do?? Is there any problems sexually?? swimming? leaking? smelling? and pain with it?? Any help will make my life a little easier. Thank you ... please e-mail and I will reply :)

19 Nov 2001
Name: Ana Lee McIntosh
Email: ServiceWorksUSA@lycos.com
Age: 50
Country: USA
Surgery: Ileostomy
IBD: UC
More Info: I became an ileostomate in October of 1988 after suffering from Ulcerative Colitis for 15 years. It was a long road to receiving my stoma but, oh well, life does go on. I have lots to share. Every thing from blockages to hernias to gas episodes. I am so glad I found this website it is great. I wish I would have had this type of support as a new ostomate.

19 Nov 2001
Name: Pina
Email: jopersico@mediaone.net
Age: 40
Country: Methuen, Massachusetts, USA
Surgery: Ileostomy
IBD: CD
More Info: I have experienced Crohn's Disease for approx 3 years. Approx 1 year ago I had surgery with the possiblity of a reversal... don't know yet. I have never felt better, but despite that I am having a hard time coping with myself physically. I'm divorced with 2 teenagers and would love to start dating and enjoying my life to its fullest, but I'm not comfortable with myself and would like some help to overcome this.

17 Nov 2001
Name: Kully
Email: crazypanache@hotmail.com
Age: 21
Country: England
Surgery: Ileostomy
IBD: CD
More Info: Hi, I am a 21 year old female Indian from England. I had my ileostomy in 1990 and was diagnosed with colitis. I went for the reversal but came out of surgery with the ostomy and was told that it seemed as if I could have Crohns. Many tests later it turns out that they are 99% sure it's crohns and therefore the ileostomy is permanent. I had my rectum removed in June 2000. My ileostomy does not have a name. I know many people name theirs.

13 Nov 2001
Name: Maranda
Email: Purplem01@aol.com
Age: 19
Country: West Virginia, USA
Surgery: Ileostomy and Urostomy
IBD: unsure
More Info: Hi, my name is Maranda. I have a urostomy and an Ileostomy. I have had both bags since I was 3 months old, now I am 19. Everyday I ask myself why can't the doctors find a way to get rid of them, but I have always got the same answer... its impossible. I have a boyfriend now and he loves me so much, but I get scared to be with him sometimes. I think I really need someone to talk to. Thanks:)

12 Nov 2001
Name: Jenn
Email: sexypryncess4269@aol.com
Age: 18
Country: Warwick, RI, USA
Surgery: Ileostomy
IBD: CD

8 Nov 2001
Name: Shaz
Email: sharon.wallace@btinternet.com
Age: 44
Country: England
Surgery: Ileostomy
IBD: Cancer
More Info: Hi, I have just come back from the hospital with the information I am to have an ileostomy. After several minor operations and a resection, there is nothing more that can be done. An ileostomy is my only chance. Any information people can give about this proceedure would be most helpful. Also I have been told it will cause severe weight loss, (myth or fact?). I am a little apprehensive so any advise please.

4 Nov 2001
Name: Ian
Email: IanAnfield@aol.com
Age: 36
Country: Ellesmere Port, Cheshire, England
Surgery: Ileostomy
IBD: UC
More Info: I was first diagnosed with UC in 1990. I had the odd flare-up, but nothing too serious until 1999 when all drug treatments failed and I had my ileostomy.
I now face further surgery to remove my rectal stump, which has become affected by UC. I am just waiting for confirmation of a operation date from the hospital.
I would like to hear from anyone with UC and/or a stoma. I would also be interested in hearing from anyone who has undergone an operation to remove their rectal stump after the formation of an ileostomy.
Also if anyone out there feels they want advice and think I may be able to help them, do not hesitate to e-mail me.

2 Nov 2001
Name: Delores
Email: dwindolf@aol.com
Age: 41
Country: Port St Joe, Florida, USA
Surgery: None yet
IBD: UC
More Info: My daughter was diagnosed at 3 with UC. She has had pancretitis twice now as a result of Asacol and 6MP. We are very concerned about the side effects of Prednisone and are starting Asulfadine(sp?) Friday. We just had her second colonoscopy yesterday at Shands Hospital in Gainsville. Discussed surgery options. We are SCARED, CONFUSED, ANGRY... Any suggestions or experiences that may help us... Please email me. My daughters name is Nicole and is now 4 1/2 years old. Her father is German (which seems to be relevant) and her aunt and grandfather on father's side also have UC, but are managed with medication.

1 Nov 2001
Name: Joann A
Email: Jaasst@home.com
Age: 44
Country: USA
Surgery: Ileostomy
IBD: UC
More Info: I have had an ileostomy for 21 years after living with ulcerative colitis for 13 years. I have been problem free except for a stoma revision one year ago. My only real hangup now is that I am recently divorced and I am not very comfortable with dating! Would love to e-mail anyone about living with an ileostomy or anything!

30 Oct 2001
Name: Rhonda
Email: rcpeacock@sympatico.ca
Age: 37
Country: Canada
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: I have had a permanent ileostomy since 1994. My husband and I have been unable to conceive in this time. Many attempts at artificial insemination with no success. Everything else according to doctors is too risky. Finally got pregnant in 2000 but miscarried. Wondering if anyone else is having this many problems getting pregnant. Also wondering if the doctors are looking too much at the ostomy and not at other issues. Both of us have been tested and are fine. It would be great to talk to others with this very emotional problem.

23 Oct 2001
Name: Karen
Email: kdesco@attcanada.ca
Age: 53
Country: Canada
Surgery: Ileostomy
IBD: UC
More Info: Had my surgery in 84 after 6 months of intense quick progressing UC - 3 months in hospital toxic megacolon lots of post-surgical stuff, ie collapsed lung from messed up central line, grand mal seizures, lost all my long hair. And then several years later developed killer panic attacks from I guess post traumatic stress. Anyway its all pretty much normal now - love life have dated post divorce and ride horses. I recently met a retired surgeon from New Hampshire who told me there is a new surgery where they can create an internal pouch from several loops of small intestine. You then catheterize and it gets rid of the external pouch and all its attendant problems. Does anyone know about this? I realize it would be major surgey and the attendant risks. Still I must admit I still dream of being "normal" again.

19 Oct 2001
Name: Sharon
Email: sharon230@hotmail.com
Age: 29
Country: Leicester, England
Surgery: Ileostomy
IBD: CD
More Info: Had crohns for 12 years. Had a colostomy for 7 years and now have had an ileostomy for two years. Had numerous surgical procedures due to crohns. Have four year old child and would like to chat to anybody in the same situation as myself.

18 Oct 2001
Name: Gerald
Email: gedbee@lycos.co.uk
Age: 54
Country: Swinton, Manchester, England
Surgery: Ileostomy
IBD: UC
More Info: First op in October 1993, sent to ITU back to theatre due to masive internal bleed, over the years five further ops and due for Urostomy in November due to nerve damage.
Update:I had my Urostomy surgery on the 28th November and am doing fine now.

14 Oct 2001
Name: Marcella
Email: sabrina961@hotmail.com
Age: 27
Country: Arizona, USA
Surgery: Ileostomy (also a colostomy and resection at various times)
IBD: CD
More Info: This site is wonderful. I really did not believe that this many people understand what I'm going through. I have had an Ileostomy for 2 yrs now. I thought this would make life easier, however I just can not seem to retain fluids. So everytime I drink liquids it goes right through me. I am also experiencing other quirks. If you have any advice for me, email me. I would love to hear about anyones similar situations. And believe me I have alot of stories to tell. Waiting to hear from you.

14 Oct 2001
Name: Andrea
Email: drossan@hotmail.com
Age: 16
Country: Richmond, Virginia, USA
Surgery: Ileostomy
IBD: CD

14 Oct 2001
Name: Barb
Email: AlFishOn@aol.com
Age: 33
Country: Canada
Surgery: Ileostomy
IBD: Perforated Bowel
More Info: I had to have emergency surgery on Sept 14, 2001 for a perferated bowel. They didn't know what was causing my pain and decided to perform a laproscopy. The surgeon was shocked to find that my abdomen was filled with the fluid thats inside your bowels. He had to locate the where the hole in my bowel was. It turned out that the hole was at the site where I had my appendix removed two months prior. My ileostomy is temporary and is going to be reversed. I would like to hear from someone what its like to have this reversal.

10 Oct 2001
Name: Bill
Email: brown-sugar@citlink.net
Age: 51
Country: USA
Surgery: Ileostomy
IBD: UC
More Info: Hi to everyone, I am fourteen months post-op and doing good. I battled UC for approxmately twelve months before opting to have my colon removed. At first, I was devastated and very scared. I didn't know what my quality of life would be or if I would ever have a normal life. Well, it's been fourteen months and I am back to living the life I had prior to having my colon removed. For those of you who are living in pain and having urgent bowel movements; having the surgery is the best thing you can do. Of course there will be an adjustment period, (some longer and some shorter than others) but it's no different than anything that is new. I still deal with the image issue. But it not consuming my thoughts every minute of the day. Remember, all wounds heal with time, I believe that. Since my surgery and recovery there is one thing that I'd like to do and that is to be an inspiration to others who are faced with making a very difficult decision or who are having a difficult time adjusting to their new image. If you would like to correspond, please feel free to send me an e-mail. Here's wishing all happiness, good health and lots of love.

10 Oct 2001
Name: Amy
Email: zcntrygal@aol.com
Age: 34
Country: USA
Surgery: Ileostomy
IBD: Unknown - colon burst
More Info: Mom to 4 young kids.

6 Oct 2001
Name: Becki Hill Kirk
Email: Beckik1221646016@aol.comor Pearhaggard@aol.com
Age: 49
Country: East Tennessee, USA
Surgery: Ileostomy
IBD: Lymphocytic Colitis
More Info: Hello again, I have one profile up with little info about myself so thought I'd do another one.

Oscar the Pouch is a little older since my last post. He was born on 16 April, 2001 & we still have our battles from time to time. I would like to find a male ostomate to chat with as I am divorced. I have an 11 yr. old son living with me & we are SO into football. Since my surgery now I get to see him make all his touchdowns & not be in the bathroom constantly. If there is a single man in the USA that would like to email me or IM. I would love to hear from you.

30 Sept 2001
Name: Kathie Mattox
Email: kathiescorner@hotmail.com
Age: 54
Country: Avon, Indiana, USA
Surgery: Ileostomy
IBD: Took antibiotics for over 2 years
More Info: I had a ileostomy about 3 weeks ago. I have been on antibiotics for over 2 years mostly for pneumonia. It got to the point where my Dr wouldn't see me, just call in more antibiotics. I asked several times for IV antibiotics hoping to clear it for good. I even asked for a bronchoscope to make sure we had the right antibiootic. He didn't want to do this. So the antibiotics killed my large intestines and they had to be removed. I was quite ill aand would have died had this not been done. I am having a lot of anxiety about the ileostomy, especially leaking. I use everything short of super glue to keep it on. I am a nurse but take care of new mom's and babies and had never worked with ostomies before. Any advice anyone can give me to get more comfortable with this I would be very grateful. Right now I am very fearful to leave the house very long. I certainly don't want be offensive to husband. Thank you ahead for advice. Mine is reversible and that I can't wait for.

29 Sept 2001
Name: Nicky Rhodes
Email: nicky@rhodes34.freeserve.co.uk
Age: 23
Country: West Sussex, England
Surgery: Ileostomy
IBD: UC
More Info: I had this surgery done as an emergency as I wouldn't be here writing this!! So really thank God I did have it done, however still find it difficult mentally and physically. The day after I was discharged from hospital my small intestine twisted just under the stoma - I was in agony being sick and was taken in again and operated on. I'm getting better but am always thinking in the back of my mind that it's going to happen again, its horrible and I'm scared still with any little twinge I feel. I would love to hear from anyone who's had this surgery who would generally like to chat about it and other stuff of course! We have to get on with our lives!!!!

20 Sept 2001
Name: Christopher MacGregor
Email: jmcm37@hotmail.com
Age: 34
Country: Shetland Isles, Great Britain
Surgery: Ileostomy
IBD: Familial Polyps
More Info: I had my ileostomy back in '98, feeling ace. 4 children, 1 wife (enough for any man). She is my rock. I'm a very happy person normally and take things in my stride. If you want to get in touch, please do.

19 Sept 2001
Name: Ashley
Email: evenleoddd@aol.com
Age: 21
Country: Indiana, USA
Surgery: Ileostomy
IBD: CD
More Info: I would love to get emails from people with pouches. I have yet to really talk to people close to my age with a stoma.

18 Sept 2001
Name: Shelley
Email: foxinsox70@bigpond.com.au
Age: 30
Country: Western Australia
Surgery: None Yet
IBD: UC
More Info: I was diagnosed with UC just 5 months ago when I had a really bad acute attack, though in hindsight I've had the disease for much longer but my symptoms were put down to Irritable Bowel Syndrome. I'm currently on steroids, Imuran and Mesasal but am not responding to the drug therapy... my Gastroenterologist says that it is inevitable that I'll have to have my bowel removed because of the severity of my colitis and I am terrified. I have so many questions but there doesn't seem to be a support group in my area so if anyone can e-mail me with their experiences (particularly about bags and J Pouches) it may help me cope with the idea of surgery a bit better. Thanks.

17 Sept 2001
Name: Helen
Email: H_Swainston@hotmail.com
Age: 17
Country: England
Surgery: Ileostomy
IBD: UC
More Info: Hi, I've had my ileostomy (Charlie)for just over 1 year. I would like to hear from anyone around the same age as me with an ileostomy. Speak to you soon.

9 Sept 2001
Name: Sharon Severs
Email: sherry-1953@mail.emcs.net
Age: 47
Country: Montrose Pennysylvania, USA
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: I had surgery in 1983 and have had lots since. I was married but my husband said I belong in a sideshow and he should get 50 cents to see a freak, so I got divorce. I have a 26 year old son - thank God for him. I lived with a guy for three years who said it didn't bother him, but in the end he loved his whiskey and other women too much. He hurt me because he said he couldn't stand sex with me cause of the bag, so I left and got a good job. However, I'm having trouble with my stoma so I have been out of work a lot. I would like to hear from other people. PS I have given up on men and try to live each day the best I can because God must have plans for me because with this I have been so close to dieing but they say I am a strong person. Well that's all. Thanks for reading this. My spelling isn't the best.

6 Sept 2001
Name: George Allen
Email: AllnGr9@aol.com
Age: 48
Country: Northern Ireland
Surgery: Ileostomy
IBD: UC
More Info: I had my ileostomy performed in 1994 and rectum removed 6 months later, so my stoma is permanent. I had a parastomal hernia which has been sorted out by moving my stoma to the other (left) side of my abdomen. Very happily married with two teenage children. Enjoy motorcycling, had 550cc Kawasaki though now use a super scooter to commute.

6 Sept 2001
Name: Deborah Fay
Email: prismarabians@hotmail.com
Age: 46
Country: Surrey, B.C, Canada
Surgery: Ileostomy
IBD: blockage misdiagnosed as cancer
More Info: Had surgery in 1999. Currently am returning to handling show dogs and breeding arabian horses. Finding dealing with ileostomy difficult at times, ie intimacy, horseback riding. Surgery was unneccesary, misdiagnosed as cancer. Left with 1 inch of large intestine and rectum. Told surgery can be reversed but with not very promising results, ie having to wear diapers. Hope to hear from anyone.

6 Sept 2001
Name: Susan Thompson
Email: arkansas_sunshine_n_florida@yahoo.com
Age: 35
Country: Chipley, Florida, USA
ICQ: 36648624
Surgery: Ileostomy
IBD: UC
More Info: Hi, I was diagnosed with ulcerative colitis, when I was around 15 years old. I had 3 children starting at the age of 19. I had my surgery May 9, 1989. Looking for others with my disease. Please feel free to contact me.

3 Sept 2001
Name: Alex Wilson
Email: alex.wilson4@ntlworld.com
Age: 56
Country: Scotland
Surgery: Ileostomy
IBD: UC
More Info: Ilesotomy for 28 years and coping fine so far. Any help I can give just ask.