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Ileostomy Contact List - Page 11
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5th July 2003
Name: Amy
Email: jcurlee@vnet.net
Age: 22
Country: USA
Surgery: Ileostomy
IBD: CD
More Info: I have just recently received my ostomy about a month ago. I've had Crohn's for ten years and this is the first surgery that I've had. Two days before I went into the hospital I had to get out of my abusive marriage, but I'm okay with it now. My two biggest problems now are trying to find someone who is at least close to my age with an ostomy to talk to (I've tried all the uoa chapters that are local) and finding a nice single guy to take me out for a meal! :)
3rd July 2003
Name: Katie
Email: ktkak9@aol.com
Age: 22
Country: Ohio, USA
Surgery: Ileostomy
IBD: CD
More Info: I was diagnosed with Crohns back in 1990. since then I have been in and out of the hospital for small flare ups/dehydration. I am now 22 years old, but never had any surgery until this past February. I am dealing with having an ileostomy pretty well. It took me a long time to recover because I had some complications following the first surgery (who didnt?!) but now life is back to normal for the most part! My best friend is the only friend that knows exactly what i had done, besides my whole family. I would like to talk to any girls or guys around my age about relationships and that kind of stuff. (you know what im talking about!!). Please email me... I will respond to all!
30th June 2003
Name: S Heath
Email: sgwheath@aol.com
Age: 53
Country: USA
Surgery: Ileostomy
IBD: UC
More Info: I had surgery in May. I would like to talk to others that have had the same thing.
28th June 2003
Name: Jason
Email: geezuschrist50@hotmail.com
Age: 30
Country: Oregon, USA
Surgery: Ileostomy
IBD: UC
More Info: I had ileostomy surgery when I was 19 years old. It has't been that great, but then again I didn't have to live with the pain of colitis as long as some people (8 months between symptoms and surgery). I've lived a normal life with the obvious complications of having a pouch. It sucks and I would enjoy hearing from people who have converted to the BCIR. I'm intertested in the technical details....like what type of insurance covers such a spendy procedure.
25th June 2003
Name: Suzanne
Email: suzanneozbal@msn.com
Age: 24
Country: Australia
Surgery: Ileostomy
IBD: UC
More Info: I have a one year old baby boy.
20th June 2003
Name: Michelle
Email: leckie6@bigpond.com
Age: 39
Country: Australia
Yahoo Messenger ID: mish_1963
Surgery: Ileostomy
IBD: CD
18th June 2003
Name: Paul
Email: sarantium@hotmail.com
Age: 35
Country: Manchester, England, UK
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: I had Crohns from the age of 12 and have had my colectomy since I was 19, which led to a big improvement in my lifestyle!! It was then discovered that I still had the Crohn's when I was 25 and I'm still on medication for it now, but its not half as bad as it used to be!!
17th June 2003
Name: Sarah
Email: lumpster70610386@aol.com
Age: 12
Country: Stoke-On-Trent England, UK
Surgery: Ileostomy
IBD: congenital funnel anus
More Info: Congenital Funnel Anus is a rare condition which only a man in Helsinki has been diagnosed with. I have been the first person in Britain to be operated on since the 1970's. Since my case they have found out that only 7 other people before me have had an operation for this condition. Hopefully I am going to have my stoma reversed in September, October or November.
17th June 2003
Name: Candace
Email: candyphc@aol.com
Age: 31
Country: Prince Edward Island, Canada
Surgery: Ileostomy
IBD: Crohns colitis
More Info: Hello to all.. I am a new mom and the new owner of an ileostomy: just had surgery in May 2003. Finding it very interesting, this new life, but wouldn't change it now for anything. Looking forward to meeting new friends here!!
15th June 2003
Name: Gordon
Email: gesilverfox@aol.com
Age: 58
Country: Winnipeg , Manitoba, Canada
Surgery: Ileostomy
IBD: a tumourin the small intestine
More Info: Please note that this surgery left me with an infection which I am still healing from. Do you have any answers as to how I may have gotten this within the Hospital? If you do could you please contact me and advise me as to what caused it. Thank you.
11th June 2003
Name: Lisa
Email: lmburton@texas.net
Age: 33
Country: Pflugerville, Texas, USA
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: I was quite sick from 20 - 30 years of age. Husband and children have been great. Had numerous proceedures done which failed, had many, many side effects. But have a wonderful life now. 6th or 7th iliostomy is working well.
30th May 2003
Name: Cindi
Email: artisteffie@aol.com
Age: 48
Country: Portsmouth, Virginia, USA
Surgery: Ileostomy
IBD: CD
More Info: I am a single female ostomate interested in meeting single male ostomate. I am 48 yrs old.
29th May 2003
Name: Donna
Email: dwoody@aol.com
Age: 43
Country: Duncan, South Carolina, USA
Surgery: Ileostomy
IBD: UC
More Info: I have had an ileostomy since 1999 after several years of UC. I am completely comfortable with my Ileostomy but I still have rectal bleeding. I was considering having my rectum removed but my doctor also gave me the option of the j pouch surgery. I was afraid of continued bleeding with this but he said that they completely strip the lining of the rectum, therefore no bleeding. I would love to hear from anyone who has had the j pouch surgery to help me with my decision.
20th May 2003
Name: Darla
Email: franklin@ccaonline.com
Age: 52
Country: USA
Surgery: Ileostomy
IBD: neurogenic bowel/rectal prolapse
More Info: I am married, mother of 4, grandmother of 1. Three children still at home, 17, 15, 10. I have Multiple Sclerosis. Work history--bookkeeper, banking, university, private bookkeeping for individual businesses. I am currently disabled. Maybe I will be able to return to the work force someday?? I loved my work but bowel & bladder problems, coupled with extreme fatigue prevented me from having enough hours in the day to accomplish anything outside of the bathroom or the bedroom. I have been self-cathing for about 10 yrs +. That has really helped me. I was using a P.I.E.(Pulsed Irrigated Evacuation) machine for bowel evacuation for 2 years prior to having the ileostomy (April 11, 2003). The P.I.E. machine was also a great help but VERY EXPENSIVE and time-consuming. Complications occurred however, & I finally succuumed to the knife. I am trying to find products that work for me. I know from my other health problems that MANAGEMENT is one of the keys to emotional & physic al health. Sometimes it takes a while to figure out what works. I am in that process right now. This site has already helped me & given me hope.
19th May 2003
Name: Tom McGrath
Email: tpnmg@yahoo.com
Age: 34
Country: Ireland, UK
Surgery: Ileostomy
IBD: Cancer
More Info: Great to know that I am not alone. I had my colon removed one year ago having suffered severe UC for 17 years. I have got through my chemo ok and life is good at the moment, thank God. I am having surgery soon to remove rectum/anus and have been offered the option of having a reversal of my ileostomy. The thoughts of the surgery scares me and I am very unsure as to what to do about the reversal, as I have heard many conflicting stories as to its success. I have adapted well to my ileostomy and dread the thoughts of returning to the "running for a loo" syndrome. I would be thrilled if anyone could offer any advice on the bowel reconstruction procedure and what to expect in the following months. Thank you.
11th May 2003
Name: Elaine
Email: etaylor1966@hotmail.com
Age: 36
Country: London, England, UK
Surgery: Ileostomy
IBD: UC
More Info: I had ulcerative colitis for 2 years then I had surgery in August 2000. For two years i was very ill and in hospital 15 times due to ulcerative colitis. Decided to have surgery and its the best thing I have ever done as I have my life back and I am coping really well. I would like to hear from anyone.
9th May 2003
Name: Marla
Email: marla3030@hotmail.com
Age: 33
Country: Tampa, Florida, USA
Surgery: Ileostomy
IBD: CD
More Info: I have had crohns for 18 years now. I had an ileostomy after my small bowel preferated back in 97, had it reversed in 2000. Went almost 3 years feeling pretty good the last 6 months though have been hell, In and out of hospital for dehydration, blood transfusion etc. I was going to the bathroom (whether there was a bathroom or not) around 20-25 a day, my bottom was so sore and none of the meds worked for me, I lost weight because I couldn't keep anything in. I have had about 4 resections so most of my intestines are gone. But yeah my colon is just fine. I decided to have the ilestomy put back on. I just had that done 3 weeks ago, and boy does my bottom feel better already. I'm down to 92 pounds, on predisone only 15mg slowly getting of that drug, my bones hurt all the time though. I have osteoporsis too. I get depressed alot lately, but I have a wonderful husband and 4 great daughters who help me get through it all. But someone to chit chat that knows what I'm going through would be great. Hope to hear from someone soon. Thanks for listening.
5th May 2003
Name: Nina Sweeney
Email: nmsweeney@comcast.net
Age: 43
Country: Woodbridge, Virginia, USA
Surgery: Ileostomy
IBD: UC
More Info: Nikki is 5 and has a total colectomy with ileostomy. She has had ulcerative colitis since she was 2 1/2 years old.
2nd May 2003
Name: Tara Stiefel
Email: Teryn66@hotmail.com
Age: 30
Country: USA
Surgery: Ileostomy
IBD: UC
More Info: I am the spouse of a 32 year old man that has lived with ulcerative colitis for 7 years and recently had surgery and now has a permenant ileostomy. What a GREAT change.
30th April 2003
Name: Louanne Fiebiger
Email: jfiebiger@modek.co.za
Age: 24
Country: South Africa
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: I am due to have surgery in Cape Town, South Africa in June, I would really like to make contact with other young people who have had this surgery in South Africa.
29th April 2003
Name: Sima
Email: Smatthes@optonline.net
Age: 35
Country: USA
Surgery: Ileostomy
IBD: UC
More Info: Husband had ileostomy surgery 6/02 following colitis and diagnosis of colon cancer 3/02. I found lots of help on this board and hope I can help others!
28th April 2003
Name: Jennifer
Email: jennifer500@comcast.net
Age: 28
Country: New Jersey, USA
Surgery: Ileostomy
IBD: UC
More Info: I've had my ileostomy since I was 23. This was due to chronic ulcerative colitis. I'll be happy to answer any questions.
22nd April 2003
Name: Joel
Email: sula143@hotmail.com
Age: 11 months
Country: Basingstoke, UK
MSN: sula143@hotmail.com
Surgery: Ileostomy
IBD: Imperforate Anus
More Info: 16 wks into pregnancy, they noticed a large dark mass on 'Peanut's' bowel. Not until he was born did they find out the cause. He was given a loop colostomey the next day, but 2 days later perforated a section of bowel between colon & ilieum. It was removed & Joel was given an iliostomy. The ostomies were supposed to be temp, but even after having to go through a pull through op at 3 months & all the dilitations that go along with it, we've since found out that the use of his bottom is not an option as it's too swollen, deformed & abonormal. So we are now awaiting a mtg with his surgeon on 12th May to find out which osotmy he will have.
Anyone else with the same prob please feel free to contact me...... Sue
21st April 2003
Name: Juls
Email: moominimeuk@yahoo.co.uk
Age: 22
Country: Leeds, England, UK
AIM: crzyjuls
Yahoo Messenger: moominimeuk
Surgery: Ileostomy
IBD: CD
More Info: Hi, my name's Juls and was diagnosed with Crohns disease when I was 12, it got so bad that at the age of 15 I had to have a permanent ileostomy. That was 7 years ago and am coping well although sometimes it bugs me that it had to happen to me. But it is much better than being as poorly as I was.
I am now 22 and lead a normal life and go to University in Leeds. It would be good to hear from other people who have similar experiences and be able to chat to someone who knows what its like to have an ileostomy, so if you fancy getting in touch, please email me.
21st April 2003
Name: Paul Jones
Email: pauly_rj@yahoo.co.uk
Age: 30
Country: England, UK
Surgery: Ileostomy
IBD: CD
More Info: Had Crohns 10years. Ileostomy Dec 2001. Having rectal stump problems. Any advice would be great.
20th April 2003
Name: Paul Melchiorre
Email: paulmelchiorre@hotmail.com
Age: 30
Country: England, UK
MSN: paulmelchiorre@hotmail.com
AIM: paulmelchiorre
Yahoo Messenger: paulmelchiorre
Surgery: Ileostomy
IBD: Cancer
More Info: Had surgery 06/25/99 for Colon Cancer
18th April 2003
Name: Sugarkay32
Email: sugarkay@comcast.net
Age: 32
Country: USA
Yahoo Messenger: sugarkay32
Surgery: Ileostomy & Urostomy
IBD: Sacral Agensis
More Info: I would just like to say that even though I have a disability that has caused me to need a Ilestomy, and Urostomy, and has also caused me to wheelchair bound, which doesn't mean I cannot move or do anything on my own because I am very independent, and I am still able to live my life. I am not saying my life has not been rough because believe me I have experienced so much in my life..both good & bad. I used to be in & out of hospitals, and had numerous surgeries. There have also been surgeries I almost did not recover from. There are times I am still having to deal with sickness, and pain, but once I have had my Ilestomy done, which I had a Colostomy before hand, but that caused too many problems. I had that since birth. Anyway, Also since I have had my Urostomy put in at the age of 7, which don't get me wrong..I still have some problems with my kidneys, but at least I am alive. The reason for the Colostomy... I was born without a rectum, and they determined that would basically be the only thing they could do for me to at least try to live a normal life as possible. The reason for the Urostomy... at the age of 7... is my bladder ended up reversing backwards from everyone else's, and it literally almost destroyed my kidneys. Enough of that... I just want to explain a little bit of what I've had done, and why. I want anyone out there to know that no matter how you are... you are a human being, with feelings, and deserve to be accepted for the person you are, and what is on the inside, and not the outside. The thing I abhor the most is not my disability but society’s view or perception of me because of my disability. That is what handicaps me. Being disabled I am also able to live a busy, useful, fulfilling life as most people do. It is not “faith” that keeps me going, it’s reality: the reality that being disabled is not a curse, a fate worse than death, it’s not a burden - it is simply a way of life. My life. It has its happy times and its sad, its hard times and easy. Just because we may have a disability doesn’t mean that we aren’t capable, or deserve to live the kind of life we choose to live. In this day and age you would think that people are able to look past the exterior of another human being, and is able to focus more on the interior. No one in this lifetime is perfect, and everyone has their faults, so who is anyone to look down upon another human being, and judge, laugh, point at, call names, or outright just be rude to someone because they are different? We are all different in our own way, whether it be the color of our skin, the tone of our body, the language that we speak, the color of hair, or eyes, and so many different other ways, so what gives any of us the right to hurt another person’s feelings? We need to put ourselves in their shoes, and try to understand where they are coming from, and what it is like to be that person. Is this world that close minded that we cannot show compassion, understa nding, or even another respect? I truly hope not because if that is the kind of world that I have to live in then I would be ashamed of the disrespect, and uncaring ways, and hurt feelings that people must feel when they are looked down upon as if they are something other than human beings. If anyone would like to chat with me I would be more willing to chat with you, and show you the kindness, and support that you deserve. Please feel free to write me, and I hope to hear from you soon. Take care, and remember.. you are just as good of a person as anyone else. Please, don't let anyone else make you feel differently.
13th April 2003
Name: Ruth Mullineux
Email: rooster_171@yahoo.co.uk
Age: 22
Country: UK
Surgery: Ileostomy
IBD: UC
More Info: Hiya, I'm 22 years old and had my operation 5 years ago. I was only ill with ulcerative colitis for about a year before surgery and it was only due to my condition deteriorating incredibly quickly that I was rushed into surgery! The next thing I knew I had an ileostomy. It hasn't been easy adjusting but I am incredibly thankful to be alive and well and that keeps me positive. I am currently studying in Spain as part of my degree course and it just goes to show that having an ileostomy doesn't stop you doing anything. I`d really like to hear from people my age-ish as i haven`t as yet spoken to anyone who has had the same surgery!
11th April 2003
Name: Michael Campasano
Email: camp7436@earthlink.net
Age: 71
Country: Citrus Heights, California, USA
Surgery: Ileostomy
IBD: UC
More Info: I had my complete colon plus a large section of my rectum removed. I had my surgery on Feb. 20, 2003. and on March 14th I almost passed away due to not having enough electrolytes and nutrients to sustain me. The paramedics had to use a defibrilator to get my heart stabilized and basically to keep me alive. I need to move my bowels about 8 to 10 times daily and this is not allowing my body to keep enough nutrients in order to sustain me. I am anemic and very weak and was wondering if anyone out there is or has experienced a similiar problem. Can anyone recommend a healthy diet and/or treatment for me. I am currently taking multi- vitamins, Folic acid,iron supplement and immodium A-D daily. This is not building me up fast enough. Can anyone give me some helpful advice?
7th April 2003
Name: Snowy
Email: stephanie@haworth3340.freeserve.co.uk
Age: 25
Country: UK
MSN: sjhaworth@hotmail.com
Surgery: Ileostomy
IBD: CD
More Info: I am 25 years old and have had my ileostomy for almost a year now. Still getting to know my new freind but would like to meet more who have experienced the same as me. Its good to know I'm not alone.... Anybody wanting to chat is welcome.
31 March 2003
Name: Paul
Email: itpaul20@hotmail.com
Age:20
Country:Canada
IBD:CD
More Info: hello everyone! Great site! My name is Paul and I am 20 years old and was diagnosed with crohns in 1996. I have had surgery once and was doing ok in and out of hospital. I was in hospital last month and was told I need another surgery and which involved removal of my colon and rectum and be put on a bag (ileostomy). I am scared, confused and not sure if I should go through this because I am feeling ok right now besides from the bloating and leaky stools. If anyone as had similar problems please email me back with your past experience and if you now anyone esle with crohns and has an ileostomy please send their emails if they wouldnt mind to chat with me or if they dont mind ask if they wouldnt mind emailing me also. Thanks for your time and hope to hear from you soon.
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