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Ileostomy Contact List - Page 13
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23 Jun 2005
Name: Mare
Email: marylford@dodo.com.au
Age: 38
Country: Melbourne, Australia
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: Have had crohn's 15 years this is my 3rd stoma & until drs can fix strictures I will keep it. Just to let people know I bungy jumped with my 1st stoma - the bag wasn't a prob just trying to step off the ledge was hard. If you can do that U can do anything - sounds cheezy but is true. I am quite an honest person when it comes to crohn's and don't have prob talking to anyone about the subject. My last surgery for my stoma (cherry) was April 4th 2005. It was a decision which had taken me 4 yrs to make. I felt a sudden weight lifted off my shoulders & knew it was the right thing to do. I am single & not bad looking hahaha. Thanks shaz for this site cheers burp!!! mare-moo.........
12 Jun 2005
Name: Janel
Email: brasley3@HOTMAIL.COM
Age: 33
Country: New Orleans, USA
Surgery: Ileostomy
IBD: CD
More Info: I'm having my ileostomy reversed soon and I don't know what to expect as far as recovery time, pain, general fears. Happy to have it reversed after three years but will I recover well after so long.
12 Jun 2005
Name: Kathleen
Email: CntryDnc22@aol.com
Age: 54
Country: South Hadley, USA
Surgery: Ileostomy
IBD: UC
8 Jun 2005
Name: Gail
Email: ghallett@cogcoe.ca
Age: 53
Country: St Catharines, Canada
Surgery: Ileostomy
IBD: UC
More Info: l have my ileostomy for 10 yrs. Just now having a lot of pain. The doctor took a biosound it came back that l have vasculitis,plus they had to send anther part away to see what else it was. I only know my blood clots. They are like ulcers when it starts then they start going into deep hole sores around your stoma. l am still going up to the MacMaster hospital. They are going to hope they can fix this problem,and move the stoma to another part on me and the hole sores close up. So far l have nurses come in every other day to keep it clean and we both pray the bag stays on for it leaks a lot. Bags never stay on. That is my story for now, and l hope some one can get back to me. Thanks for listening for it is nice to know how other people get along with theirs and may be someday we will understand this part of our body better.
5 Jun 2005
Name: Kim
Email: kimlcwbest@yahoo.com
Age: 39
Country: Douglasville, USA
Surgery: Ileostomy
IBD: UC
More Info: I was diagnosed with UC in 1984; had a J-Pouch with no problems in 1996. Had emergency surgery while prego March 2005, they said by bowel obstructed. I say "they" said my bowel obstructed cause I didn't have any problems days B4 this emergency life saving surgery. They told my husband we might not make it through the night. I have an permanent ilestomy and my son passed away one month after the c-section. He was born brain dead, because of not getting oxygen while my bowel was obstructed.
24 May 2005
Name: Jinna
Email: jinna@blandford14.freeserve.co.uk
Age: 49
Country: Doncaster, UK
Surgery: Ileostomy
IBD: Cancer
More Info: Would like to talk with someone male as I lost my husband in road accident, then had to have ileostomy which has left me where I do not feel like a woman and find it very embarrassing.
29 Apr 2005
Name: Kathy
Email: kathy41@yahoo.com
Age: 41
Country: Boston, USA
Surgery: Ileostomy
IBD: Hirschsprungs
More Info: Hi, I am scheduled to have an ileostomy in a few weeks and I have had severe reactions to surgery and anesthesia in the past and almost died. I am thinking of cancelling my surgery. also my doctor offered me the pull down or through surgery where they connect the ilium to the rectum. Any info on after effects of surgery or about the pull through surgery would be appreciated. Thanks and I would love to chat with others in this situation. I Have already had one colectomy in 1992.
23 Apr 2005
Name: Sonia
Email: nonny@chimoindes.fsnet.co.uk
Age: 50
Country: London, UK
Surgery: Ileostomy
IBD: UC
More Info: I am now single and would like to speak with fellow ileostomates.
21 Apr 2005
Name: Joyce
Email: joycel40@yahoo.com
Age: 40
Country: Indiana, USA
Yahoo: joycel40
Surgery: Ileostomy
IBD: UC
10 Apr 2005
Name: Cat
Email: capini69@hotmail.com
Age: 19
Country: Leeds, UK
MSN: capini69@hotmail.com
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: I was diagnosed with UC in 1997/98 and underwent a temporary ileostomy but due to further tests I was finally diagnosed with crohns disease and therefore the reversal operation was not possible. But I am happy the way i am. I have been well for so many years and its been great. I have been able to do pretty much anything that I have wanted to do. I am at uni studying fashion design and have a boyfriend of 2 years, who has been great. Would love to hear of people similar age although that's not relevent and would love to hear from people who have had a similar experience. Anyone can contact me, it would be great to hear from anyone.xxxx
8 Apr 2005
Name: Amanda
Email: pillhead@hotmail.com
Age: 36
Country: England, UK
Surgery: Ileostomy
IBD: CD
6 Apr 2005
Name: Richard
Email: vogelrich2@aol.com
Age: 39
Country: California, USA
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: I was diagnoised with crohns at age 19. I had my surgery in my early 20's. I've had a normal life and have two sons. I'm single and would like to meet a woman with the same illness that I have. I'm a healthy, good looking man that jogs and lifts weights to keep in shape. If interested, please e-mail me
25 Feb 2005
Name: Val
Email: vsoftspungold@hotmail.com
Age: 51
Country: Harrogate, England
Surgery: Ileostomy
IBD: UC
More Info: Had an Ileostomy in January this year after excruciating pain with Ulcerative Colitis. Op was an emergency so a bit of a shock to wake up in high dependency with a bag. Biggest problem my Incision stitches gave way leaving me with a gaping hole in my stomach which the nurses come and pack and dress daily. Leakage from my appliance into this open wound has caused infection. This problem was only just sorted by trying different appliances and using extra flanges. Has anyone else experienced this problem?
As I'm getting married early April I thought my husband-to-be might change his mind as I'm not what he asked to marry! Glad to say he has stuck by me through this. I am 51 years old and also have M.E. and Fibromyalgia.!
17 Feb 2005
Name: Cheryl
Email: cbruno11@aol.com
Age: 51
Country: New Jersey, USA
AIM: cbruno11
Surgery: Ileostomy
IBD: cd
More Info: I am a 51yr old single woman and have had my ileostomy since I was 36. Having my ileostomy gave me life to enjoy with the 2 children I had yet to raise. I had crohns disease since I was 20, had many resections until the final surgery. I have also had my rectum removed. My ileostomy is there for life and although it is very tough sometimes being single and all, trying to explain this to someone can be difficult. Yet on the better side, I am healthier than I have ever been, no one takes me for the age I am and there is nothing I cant do with my ileostomy. life began for me at 36!
5 Feb 2005
Name: Judy
Email: r.j.burk@worldnet.att.net
Age: 27
Country: Michigan, USA
Surgery: Ileostomy
IBD: UC
More Info: I have had my ileostomy for 2 1/2 years due to UC. I have two beautiful children that I had before my surgery. Well, My husband and I just found out that we will be expecting our third child in September. I am just over a month along and very excited, yet scared at the same time. I have tons of questions regarding pregnancy with an ileostomy. I would love to chat with anyone who has gone through this. (or pregnant now).
2 Feb 2005
Name: Charlotte
Email: CharlieG@Freenet.co.uk
Age: 30
Country: Wales, UK
Yahoo: lindakebble@yahoo.co.uk
Surgery: Ileostomy
IBD: UC
More Info: What a fantastic site, it is great to read real life experiences.
Have had severe UC for 17 years and finally had to have surgery (should have had it 10 yrs ago but thought I would find something to make things better)the stoma is a massive improvement on my health. I am considering the J-Pouch op but still not certain what to do.
One of my biggest problems with the UC was anxiety, I knew I had to be very near a loo at any time and any car trip (even only a couple of miles) shopping trip etc. caused me to panic. The thought of being away from the toilet or being in a house with only one toilet ( if someone else was in there I would be on red alert listening out for the flush and pacing up and down outside waiting for them to come out) would send me in to a blind panic and no amount of breathing excercise/herbal remedies/hypnosis would help, to the point where I would feel like I would pass out or lose control of my bowel totally. Any crowd or Q would set me in a spin and the thought of getting to a public loo and finding a Q would be unthinkable and probably end up with me on the local papers front page for mass murder of the rest of the people so I could get to the loo!! I still start to panic now even though I tell my self I don't need to get to the loo as I have a bag, this soon passes but the feeling is still there ingrained in my brain. I am worried that if I can't crack the mental/anxiety symtoms the J -Pouch will be a non starter as my mind will have me rushing to the loo even if the pouch doesn't.
Has any one else had this problem or am I just a lunatic, any advice appreciated.
24 Jan 2005
Name: Lisa
Email: lisas@shoal.net.au
Age: 38
Country: Australia
Surgery: Ileostomy
IBD: UC
More Info: Hello to all osteomates out there living a better life now since there surgery. I would like to make some friends I can chat to as there are very few people my age with an ileostomy in the country area where I live. I have had my ileostomy now for about 18 months and havent had any major problems so far. I had ulcerative colitis for 7 years and became unresponsive to all drugs and my poor ol'e colon was about to rupture. I am now healthy and strong and have good energy levels at last!! I try and keep a positive attitude and just get on with living a nice life. I am married and have a 3 year old son, 1 red cattle dog and 2 horses. Looking forward to hearing from you.
8 Jan 2005
Name: Linda
Email: lindakebble@yahoo.co.uk
Age: 44
Country: London, England
Yahoo: lindakebble@yahoo.co.uk
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: I have been offered a pouch and would like some advice. Have had a illeostomy for 6yrs and have been happy but worried about side effects from the reversal. Is it worth it?
29 Dec 2004
Name: Lara
Email: maclaz@bigpond.com
Age: 27
Country: Darwin, Australia
Surgery: Ileostomy
IBD: long segment Hirschsprungs
21 Dec 2004
Name: Laurie
Email: laurieotr@charter.net
Age: 38
Country: Wisconsin, USA
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: I am getting married in June and we are going to try and have a child. I am worried about changes that may occur during a pregnancy with an illeostomy. I have been doing great for the last 14 years with the illeostomy.
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If you would like to use any of the images in these pages, please email me to get permission. Thanks.
If you would like to use any of the images in these pages, please email me to get permission. Thanks.