Ileostomy Contact List - Page 9

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31 December 2002
Name: Shelley
Email: powerstroker@shaw.ca
Age: 33
Country: Canada
Surgery: Ileostomy
IBD: UC
More Info: I have had UC since I was 19 yrs. I remember my first attack (June 30 1989) like it was yesterday. I think of it as a reminder that my surgeries were a god send. I had 3 surgeries at age 21 in 1992 and about 4 since for scar tissue so unable to have kids but I have a very understanding husband, he has been through the whole thing with me.I have felt great off and on since... but I have hip pain. Any on else have any joint pain and any suggestions on helping it? Thanks.

29 December 2002
Name: Tami
Email: stbramble@msn.com
Age: 30
Country: Tennessee, USA
Surgery: Ileostomy
IBD: colon stopped functioning, fell into pelvis

29 December 2002
Name: Lynn
Email: LYNN76530@yahoo.com
Age: 37
Country: Paris, Texas, USA
Surgery: Ileostomy
IBD: CD
More Info: I have had crohns for 15 yrs. Last surgery 5 yrs ago. I have had six ops and have had my ileostomy for 10 yrs now. Been in remission since my last op. But still deal with pain and nausea alot and also being tired alot. I do what I can when I feel good and rest when I dont. I would love to talk to others if you have questions or just want to chat. email me.

28 December 2002
Name: Melissa
Email: pontiacgirlla@msn.com
Age: 36
Country: St Charles, Missouri, USA
MSN: pontiacgirlla@msn.com
Yahoo ID: lazydaisy918
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: Hi, I would like to talk to anyone about this stuff. I can't answer to many questions because I just had surgery on November 2002 so I'm really new at this. I have already named her, her name is Betsy. If any body wants to chat or just e-mail let me know.

27 December 2002
Name: Carole
Email: carole43mark@yahoo.co.uk
Age: 43
Country: Northwest England, UK
Surgery: Ileostomy
IBD: UC
More Info: Had an ileostomy 4 years ago. I am managing ok but still don't like it. I am divorced and find that having to explain the ileostomy to boyfriends is pretty awful. Anybody else have this problem?

25 December 2002
Name: Dena
Email: dmbarbush@cs.com
Age: 24
Country: Lancaster, Pennsylvania, USA
Surgery: Ileostomy
IBD: UC
More Info: I was first diagnosed with UC November 2000. I was mangaged for a year on medication until I experienced complications. August 2001, I tried to taper prednisone after hospitalization. In December, I attempted to manage the UC with a new medication and a prednisone taper. Due to steriod dependence and medication failure, surgery was suggested by my GI dr and surgeon. I had my surgery on November 11, 2002 and plan to have my takedown in February 2003.

10 December 2002
Name: Thomas
Email: t.landy@worldnet.att.net
Age: 63
Country: Colorado, USA
Yahoo ID: gnixon8401@yahoo.com
Surgery: Ileostomy
IBD: UC
More Info: I was operated in 1961 at the Graduate Hospital In Phila. My wife and I had 3 Children. Now we have 5 grandchildren. I workout evey day. I am in good health.
My question is how long do people survive ileostomy surgeries? I have mine now for forty years.

8 December 2002
Name: Gene
Email: gnixon8401@yahoo.com
Age: 42
Country: Maryland, USA
Yahoo ID: gnixon8401@yahoo.com
Surgery: Ileostomy
IBD: UC
More Info: Suffered from UC for 10 years before becoming an Ostomate in 9/97. I now know that my pain and illness was brought on, so that I can help people through their life changing experience.
Remember: Your stoma is a part of you and not the entire you! Get out and enjoy your life and start doing all of the things you were unable to while you were sick!
Please e-mail me with any questions or just to say hello.

3 December 2002
Name: Deb
Email: tac500@hotmail.com
Age: 40
Country: New Zealand
Surgery: Ileostomy
IBD: Ulcerated Bowel
More Info: Hi everyone... I had emergency surgery in July 2002, for complications after inflamatory drugs ulcerated the bowel. After 3 weeks in Intensive Care and a rude awakening to my attachment (my ileostomy) I'm still a novice to this, but on the whole I'm taking it in my stride. There is a reversal pending (even though quite a large portion of the bowel was removed) and I would be interested in hearing from others that have endured this course of surgery so I have some insight as to what to expect. I would also like to hear from those with experience in tips and tricks that have been helpful to them in the past ... such as avoiding leakages (I have a problem when I wear tight clothing or while sleeping)... intimacy (Im in a new relationship and am very conscious of my attachments even though my partner is wonderful)... dealing with the emotional setbacks and lack of confidence. Simple things like swimming etc... I would appreciate any communication, ideas or information. My surgeon isn't very sympathetic to my needs or the way it feels to be an ostomy patient. So all replies gratefully received.

2 December 2002
Name: David Rouillard
Email: Davidrr@attbi.com
Age: 51
Country: USA
Surgery: Ileostomy
IBD: ????
More Info: Ever sincee my surgery I've had urinary burning. No one has been able to Diagnose the problem. I have tried many different antibiotics and holistic approaches with little success. Can anyone help?

5 November 2002
Name: Sylvia
Email: nana1968@msn.com
Age: 62
Country: Miami, Florida, USA
Surgery: Ileostomy
IBD: UC
More Info: Hello, I'm also new to this, I was diagnosed with UC in 2001, for a whole year I was under medication but it did not do anything for me and the disease got worse, it also change my life with all the side effects of the medication that I had to take. I had my surgery this pass August and to be honest it has been very hard... but I'm feeling much better, I would love to meet other people and share stories.

3 November 2002
Name: Bob
Email: rkermgard@wi.rr.com
Age: 62
Country: Kenosha, Wisconsin, USA
Surgery: Ileostomy
IBD: UC
More Info: I had a J-pouch created January 2001 in Milwaukee. I struggled with it until November of 2001 when I had it reversed and an ileostomy created. I could not control the waste and was trapped in my house for months. I have explained most of it on my web site at: http://home.wi.rr.com/kermgard/page102.html.
I am finally having a more "normal" lifestyle, and will be taking my first major trip February of 2003 to Hawaii for three weeks. I hope that travel for that long on a plane will not cause problems since this will be my first trip since my operation. I have heard it is a good idea to have a letter from my doctor that will help when going through customs and security check points while traveling. Is this really necessary? I have many many questions regarding travelling. Any suggestions and advice will be appreciated. Thanks.

16 November 2002
Name: Natalie
Email: natalie@vwbug.zzn.com
Age: 20
Country: Grimsby, UK
Surgery: Ileostomy
IBD: UC
More Info: Would really like to chat with anyone else with an ileostomy as I've not had any chance to as yet. I've only had Sally for a few months so far so I suppose I'm still getting used to it all. My e mail address is above to contact me on. Hope to hear from you soon. .

15 November 2002
Name: Isabel
Email: mia78@dowco.com
Age: 79
Country: British Columbia, Canada
Surgery: Ileostomy
IBD: Bowel Died
More Info: I have trouble travelling as when I sit for any length of time the contents collects at the top of the bag and can become unmanageable. Any tips for this would be appreciated.

14 November 2002
Name: Lori
Email: lorijean@acronet.net
Age: 38
Country: Wisconsin, USA
Surgery: Ileostomy
IBD: Indeterminate Colitis
More Info: I first had a j-pouch dec '00,it never worked properly. I had an ileostomy done in July '02. Doctors are still not sure if I had crohns or colitis.

9 November 2002
Name: Thelma
Email: MODELT37@MSN.COM
Age: 65
Country: Franklin, Indiana, USA
Surgery: Ileostomy
IBD: Familial Polyps

1 November 2002
Name: Jodie
Email: sweety_bird17@msn.com
Age: 17
Country: UK
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: I had the operation for a stoma at the age of 15. I have had it reversed. I am 17 now and feel fine.

1 November 2002
Name: Lizzie
Email: Lizzie@hospital.com
Age: 22
Country: England
Surgery: Ileostomy
IBD: UC

31 October 2002
Name: Diana Martin
Email: dba_1@msn.com
Age: 45
Country: USA
Surgery: Ileostomy
IBD: CD
More Info: I have had an ileostomy since 1985. I had no problems adjusting to it because I was finally pain free. In 1998, I began experiencing excruciating pain, severe blockages, gas (so loud and embarrassing during staff meetings), and abcesses near the stoma site. The stoma was moved from the left side to the right side. I have been pain free and have not taken any medication since that time. I had an excellent surgeon in 1985. The stoma was positions so that I was even able to wear a bikini. Living with Crohn's disease has been a challenge which has made me stronger. I only regret that most of the time I suffered in silence. I still have not been able to share this with friends.

30 October 2002
Name: Melissa
Email: pontiacgirlla@msn.com
Age: 36
Country: St Louis, Missouri, USA
Surgery: Soon to have an Ileostomy
IBD: Crohns Colitis
More Info: Hi Everyone. I have had my problems for 16 years. Hopefully it will all be taken care of very soon! I'm so glad I found all of you guys to help me through this.

30 October 2002
Name: John Longinotti
Email: johnl101@aol.com
Age: 66
Country: Atwater, California, USA
Surgery: Ileostomy
IBD: CD
More Info: Had my operation in '89 but had to have a revision as the surgeon didn't protrude the stoma far enough. I take opium 2 or 3 times a day for solidity, works very well and have no problems except for the usual times visiting the toilets.

26 October 2002
Name: Barb Wyatt
Email: wyattclan@telus.net
Age: 39
Country: Nanaimo, Canada
MSN Messenger: boo_boo_the bear
Yahoo Messenger: barbo_37
Surgery: Ileostomy
IBD: Familial Polyps
More Info: Diagnosed with colo-rectal cancer in 2001

26 October 2002
Name: Rachael
Email: r.c.nicholls@talk21.com
Age: 30
Country: Derby, UK
Surgery: Ileostomy
IBD: Cancer
More Info: Hi, would love to share experiences with any other ostomates - particularly those who have come through bowel cancer successfully. I'm a very positive person, and fully believe that the ileostomy has improved the quality of my life in the past few months (and I didn't even realise that I had a problem with the quality of my life before the op! ;) )

26 October 2002
Name: Terry Gallagher
Email: terry.gallagher@ntlworld.com
Age: 52
Country: Nottingham, UK
Surgery: Ileostomy and Urostomy
IBD: Gangrenous colon
More Info: Please see my three stories on Shaz's stories page http://www.ostomates.org/stories/040.html, http://www.ostomates.org/stories/033.html and http://www.ostomates.org/stories/001.html
Reading those will save a lot of explaining. As I've done ISC, had a suprapubic catheter, colostomy, experience with MRSA and know about anaesthetic problems being a grade 4 intubation now, email me for any help on those or related problems/questions.

25 October 2002
Name: Melissa
Email: pontiacgirlla@msn.com
Age: 36
Country: Missouri, USA
MSN Messenger: pontiacgirlla@msn.com
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: Hi,I have had my illness for 16 years. My doctors have told me that my colon must come out so I have to see a surgeon on Nov 7, 02. I guess I will see what's going on then. I'm so grateful I found this site. It has helped me a lot to get through this. Thank you.

6 October 2002
Name: Susie Carter
Email: susieq_dt@yahoo.com
Age: 18
Country: USA
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: My mother is going to have an iliostomy or colostomy (temporary, permanent???) WE need as much info as possible on it... she knows she has to have it to get better and to live a somewhat healthier life, but she is scared and no one can give any info or advice on it. She has been going through the pain for many many years now and needs a solution. please help

30 August 2002
Name: Beatrice Wiedeman
Email: bdwhdw@newnorth.net
Age: 71
Country: Tomahawk, Wisconsin, USA
Surgery: Ileostomy
IBD: Diverticulitis bowel rupture
More Info: Have had my ileostomy since 2000 when my bowel ruptured and I almost bleed to death. Went back for reversal but had a rupture under and had to have gallbladder and stones removed so still have my ilestomy and will have forever. I am not pleased as this year I have been having so much pain and have had scoping done and both Drs. say take extra strength Tylenol every 4 hours. The bowel looked good. I have only 7 inches. Has any one got any ideas. I would appreciate any information.

19 August 2002
Name: Robert
Email: robertbenson@mchsi.com
Surgery: Ileostomy
IBD: Colon Cancer
More Info: I am facing an ileostomy next week. I have colorectal cancer and a colon full of polyps so they will remove entire colon. I would really like to correspond with someone who has had a similar experience. Needless to say I am terrified about my prospects. A cat scan has revealed no cancer any place else so that is positive. Any help you can give me would be appreciated.

20 Sept 2002
Name: Donna Miller
Email: donnagm4444@msn.com
Age: 63
Country: Minneapolis, Minnesota, USA
Surgery: Ileostomy
IBD: CD
More Info: Have had my ileostomy for 12 years. The only major problem I've had is a sudden, severe fluid loss and it's been over 2 years since the last time. Other than that, I am just fine. It's kind of a "Murphy's Law" with this ostomy and it's been interesting.

12 Sept 2002
Name: Lynda Rushe
Email: lynda.rushe@blueyonder.co.uk
Age: ??
Country: Birmingham, England
Surgery: Ileostomy
IBD: Cancer
More Info: Has anyone had a reversal of an ileostomy after having surgery 16 months ago

4 Sept 2002
Name: Mr Leslie Forrest
Email: forrestles@aol.com
Age: 73
Country: England
Yahoo Messenger: seeblue1 (I don't check it every day!)
Surgery: Ileostomy
IBD: Cancer
More Info: Hello,I'd like to hear from anyone who's had probloms with their bag filling up a lot, especially after tea time, any ideas?

23 August 2002
Name: Arlette Patron
Email: lilylou@hotkey.net.au
Age: 68
Country: Gold Coast, Australia
Surgery: Ileostomy
IBD: UC and Hirschsprungs

19 August 2002
Name: Candice
Email: seeblue@surfbest.net
Age: 54
Country: Tampa, Florida, USA
Yahoo Messenger: seeblue1 (I don't check it every day!)
Surgery: Ileostomy
IBD: UC
More Info: After suffering with UC since 1994 I finally had to have surgery 12/28/01.I have a permanent Ileostomy. No turning back for me. :) It was a long hard road, full of pain and agony I never thought I would live through. I am doing VERY well now. I have a pity party for myself once in while but I know I am lucky to be alive. I like chatting and check #Ostomyland often to see if there is anyone who wants to chat. I am there as Seeblue2.

19 August 2002
Name: Susan B
Email: suzanbicknell@shaw.ca
Age: 38
Country: Vancouver, BC, Canada
Surgery: Ileostomy
IBD: Mega Colon
More Info: Oh God, I have been going through hell and need someone to talk to. After an inital bowel surgery in 1992- I stabilized fairly well and then got pregnant in 95/96. Problems during pregnancy then escalated afterwards and resulted in a resection in Nov of 99. Recurrent problems resulted in a "temporary" colostomy for bowel rest and in 3 short months I was back on the table for an ileostomy due to my large bowel -"becoming"? a mega colon and so the story goes on. Last surgery was Aug 2000 and I am still having major problems- especially the pain and the way the ostomy seems to work (malfunction?) I am continuously going to H for IV Therapy- potassium and magnesium ususally, and the doses seem to be getting higher and higher. I am still on morphine and am in constant pain as if a white hot poker were being pushed into my right side where my ostomy is. The amount of bleeding, discharge and output, growths, infections are not helping me at all. I am at the end of my rope and need some support... and any suggestions would be extremely well received. I have just heard about the pelvic pouch procedure and am getting excited just thinking of this posssibility... Any suggestions? Advice? Any thing someone could send would drastically improve my outlook on life... since having the ostomy I have lost all confidence, and forget about even feeling sexual(!) sorry guys... I am hoping a female will read and help... Thanks for your site and its great information!

19 August 2002
Name: Susan Stanton Burke
Email: ssbgr8ads@a-znet.com
Age: 43
Country: Scott, New York, USA
Surgery: Ileostomy
IBD: ??
More Info: What about sex after an ileostomy?

18 August 2002
Name: Susan
Email: Susanathome7@aol.com
Age: 60
Country: UK
Surgery: Ileostomy
IBD: UC
More Info: I'm not a happy coper!

10 August 2002
Name: Julie
Email: foxyoasis@hotmail.com
Age: 20
Country: Slingerlands, USA
MSN: foxyoasis@hotmail.com
AIM: irishprincess199
Yahoo Messenger: foxyoasis@yahoo.com
Surgery: Ileostomy
IBD: CD
More Info: Hi all, I've been through a lot of crap so if I can help anyone out be a friend or give support, please don't hesitate to email me or contact :)

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Ileostomy Contact List - Page 9