Ileostomy Contact List - Page 7

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26 Feb 2002
Name: John Phillips
Email: joejohn35@msn.com
Age: 67
Country: Solihull, West Midlands, UK
Surgery: ileostomy
IBD: UC

26 Feb 2002
Name: Barb Smiley
Email: barb5740@cox.net
Age: 61
Country: Irvine, California, USA
Surgery: ileostomy
IBD: UC
More Info: I had my surgery in 1968, due to a toxic megacolon. I would be very interested in developing an e-mail correspondence with other "mature" women, who go through some of the same daily/weekly maddening frustrations that accompany a stoma. Please email me, I'll answer quickly.

21 Feb 2002
Name: Tom Brogden
Email: betadoom@hotmail.com
Age: 17
Country: Wakefield, England
Surgery: ileostomy

12 Feb 2002
Name: Billie P
Email: bpeter1287@aol.com
Age: A Granny!
Country: Grayslake, Illinois, USA
Surgery: ileostomy
IBD: Diverticulitis/Rectal, Vaginal fistula
More Info: I have Ehlers Danlos Syndrome. A connective tissue disorder affecting all of the tissues in the body, skin, arteries, nerves and of course the colon. My ileostomy was due to hundreds of diverticuli pockets that were forever getting infected. I have a loop ileostomy which was to be a temporary thing until I healed. The surgeon said in 3 to 6 months we will reconnect you back up. After 3 months I asked him if I could keep my stoma since I felt so much better his answer was... certainly, it's yours! To hook me back up would just be stupid as I'm sure some of the pockets would just re-infect, again!
I need to know what it means to irrigate an ileostomy with the colon and rectum still in tack. No one seems to know except to use a slow stream of water in the mucas fistula end of the loop ileostomy. Pleae let me hear from any of you who know what to do. Or you just may need some answers yourself.

12 Feb 2002
Name: Casey Vigue
Email: caseyvigue@hotmail.com
Age: 27
Country: Corinth, Texas, USA
ICQ: 940-321-7366
Surgery: ileostomy
IBD: Crohns Colitis
More Info: When I was 20, I went from mildly sick in 3/95 to deathly ill by 8/95. I was diagnosed with UC and after not responding to drug therapy, they said I would be cured if I had my colon removed. So I had j-pouch surgery... temp ileostomy for 6 weeks... then the take down. I stayed sick for a year. When I developed a fistula, they said I had Crohns and I've had a perm ileostomy since 10/96. I was in remission after surgery, but in 2000 I relapsed. I have had 4 Remicade treatments to date. I would love to hear from anyone that wants to chat. I attend CCFA and UOA meetings. They have really helped alot.

8 Feb 2002
Name: JoAnna Inman
Email: poohtiggereyeore@hotmail.com
Age: 17
Country: Crossville,Tennesee, USA
Surgery: ileostomy
IBD: UC
More Info: I was diagnosed with UC when I was 9. I had a total colectomy in December, 2000. It did not work out too well so I had ileoatomy surgery in December, 2002. I feel alot better but it is emotionally draining! Please e-mail.

7 Feb 2002
Name: Kathie Mattox
Email: kathiescorner@hotmail.com
Age: 54
Country: Avon, Indiana,USA
Surgery: ileostomy
IBD: Had a clot that killed my colon
More Info: It's 1:30AM and I am really about to lose it completely. I had a Ileostomy put in 9/6/01. It is reversable. I have had problems from the very 1st day. I can not get my osotmy bag to stay on but only for a few hours. I been to see my ostomy nurse, talked with other nurses from various companines and I can't stand it any more. I do every thing everyone tells me. I have yet since Sept. slept through the night because I have to get up and change my bag almost every night. So needless to say I am very sleep depprived among everything else.
I have just had 5 major surgeries in the past 4 mos., the last one 2 weeks ago last Tues. to remove my right kidney because I had renal cell carcinoma. I do not have a normal life because I am afraid to leave the house. Yesterday, I went out for 1 hour and by the time I got home I had good leak going on. I can't go grcery shopping, I can not even go to Mass on Sundays. I just don't think I can take this anymore.
It can be reversed but the thought of going thru another surgery is very hard to think about. But I am to the point now where I don't care. My surgeon (who is wonderful) says it will be a very difficult surgery lasting 8 to 12 hrs. but right now I don't care. I am a nurse and want to go back to but I can't go back to with these problems. Is there any one out there who can help me?
The last leak didn't even come from a full bag. The stoma had a lot of stool around it and forced it off. I just don't think I can deal with this anymore. I can usually deal with things quite easily but this is pushing me over the edge. Like I said I dread the thought of another surgery but right now see no other way out.
Has anyone else had problems like this and were they able to get them resolved? If so please write me. I am desparate. I am going to go take a sleeping pill and see if I can get back to sleep. Thank you so much for listening to my sob story.

5 Feb 2002
Name: Nancy Wadleigh
Email: wadleighnancy@hotmail.com
Age: 41
Country: Kensington, New Hampshire, USA
Surgery: ileostomy
IBD: CD
More Info: I just got my ileostomy Jan 4th. I've had several set backs to which the latest is kidney stones. I finally came to grips with having to have the surgery and things seem to have back fired on me. I know I'll get through this but I'm just barely hanging in there. Hoping to see the light at the end of the tunnel through these great web sites.

3 Feb 2002
Name: Steve
Email: stv1912@aol.com
Country: Olive Branch, Mississippi, USA
Surgery: ileostomy
IBD: UC/Cancer

2 Feb 2002
Name: Uncle Moishe
Email: unclemoishe@hotmail.com
Age: 62
Country: Washington, DC, USA
Surgery: ileostomy
IBD: Cancer

30 Jan 2002
Name: Dennis Rogers
Email: halfbuck52@att.net
Age: 49
Country: Bethel Park Pennysylvania, USA
AIM: halfbuck10
Surgery: ileostomy
IBD: UC
More Info: My surgery was 16 years ago & knock on wood never any major problems. This has never stopped me from doing anything that I did B-4 my surgery. Anyone that would like to talk, I'm here.

29 Jan 2002
Name: Darci
Email: acscowgirl@hotmail.com
Age: 13
Country: Anchorage, Alaska, USA
MSN Messenger:acscowgirl@hotmail.com
Surgery: ileostomy
IBD: CD
More Info: Hey, I am writing this the nite before I get my ilesotmy *or however u spell it* and I just want to see if any other kids/adults/peoples have one in Anchorage. Thanx. E-mail me anytime if you want. I also have MSN

26 Jan 2002
Name: Michelle
Email: cute_cat63@hotmail.com
Age: 15
Country: Australia
ICQ:135445503
MSN Messenger: cute_cat63
Surgery: ileostomy
IBD: Birth Defect
More Info: Hi! I'm a 15 yr old ileostomate. I love reading, surfing the net, playing The Sims, and hanging out with friends. I'd love to hear from u, especially if u r around my age - just e-mail, ICQ Message, or MSN me any time & I'll get back to u asap. Luv Michelle.

18 Jan 2002
Name: Andrea Gray
Email: graya1@bp.com
Age: 21
Country: Scotland, Great Britain
Surgery: ileostomy
IBD: UC

18 Jan 2002
Name: Michelle Brekke
Email: michellebrekke@hotmail.com
Age: 29
Country: Bloomington, Illinois, USA
Surgery: ileostomy
IBD: Familial Polyps w/rectal cancer
More Info: My husband and I are researching the possibility of artificial insemination with egg donor since I'm on hormone replacement due to ovaries have shut down 5 years ago.

18 Jan 2002
Name: Mistowski
Email: smistowski@t-bird.org
Age: 47
Country: San Marcos, USA
Surgery: ileostomy
IBD: UC
More Info: Had surgery at the age of 13. Currently having problems with odor and finding rings for stoma. I am active and wear a belt that attaches in the front around my ring that I have made myself. Does anyone else have similar problems?

17 Jan 2002
Name: Jody Jensen
Email: jody.jensen@juno.com
Age: 28
Country: Sacramento, California, USA
Surgery: none yet
IBD: UC
More Info: My doctors diagnosed Crohn's first off, but now think I have Ulcerative Colitis. Now if that may be the case, I want to know more about surgery and options for a cure. Also regarding doctors in California that can perform such surgeries. I also want to have a baby and I'm somewhat concerned about that as it has to do with IBD. Any info would be appreciated.

17 Jan 2002
Name: Adele
Email: wellarge5@netscapeonline.co.uk
Age: 34
Country: Notts, UK
Surgery: Ileostomy
IBD: UC
More Info: I am a 34 year old divorcee with a child of 16 and a grandchild of 18 months. I had my first ileostomy op when I was 19 due to me having UC. I had my second ileostomy op 2 years ago. This was my lifesaving op as I had adhesions on my bowel. If you would like a chat, please feel free to get in touch. (Single males would be good, ha ha). I lead a pretty normal and hectic life. I, too, have a name for my stoma. You will have to get in touch to find out what it is. speak to you soon.

15 Jan 2002
Name: Liz
Email: baarbarella@hotmail.com
Age: 31
Country: Australia
MSN Messenger:baarbarella@hotmail.com
Surgery: Ileostomy
IBD: UC
More Info: Hiya all! I am pretty new to this stoma thing! I had a total colectomy 4 wks ago and I am now the proud mother of a healthy pink stoma named Stella. I was diagnosed with UC in 1998 and my first flare-up was fairly minor (in hindsight!) and responded to Mesesalizine and Predsol enemas. I was relatively problem free until Oct 2000, when my 2nd flare-up hit hard. Months of pain, vomitting and was put on Prednisolone after the prev. mentioned drugs didn't work for me. Each time they tried to wean me off the steroids, I'd get to a certain point and it would flare up again.
In October 2001 it had flared up so badly again that I was put up to very high dosage of the steroids to try to get it in hand (75mgs). It didn't work. I was admitted to hospital to go on an IV infusion of hydracortisone for 7 days......it didn't work.....in fact, they performed a colonoscopy after the 7 days and it was actually worse. My intestine was so badly ulcerated and inflamed that they only took a quick peek at part of the damage and pulled out because they feared perforating my intestine.
It's such a relief to be virtually pain free!! Prior to the surgery I was so ill and just totally miserable. My days were spent on the loo, in major abdominal pain and vomitting due to the severity of it. The minor post-op pain I have now is NOTHING in comparison and even though my stomach/abdomen looks like a warzone (something to show the grandkids!), so far, I can say it was worth it.
Hope to have a re-join (j pouch) in about 6mths although, after reading people's comments about it on here, I will definitely look RIGHT into it before I make a decision to have it or not.
I'm single so the whole 'relationship' issue has been on my mind but reactions so far have been that people, including prospective dates, couldn't care less that I have a bag hanging off me...... lol Early days for me but I can't stress the importance of positive thinking and keeping your sense of humour...... it makes a world of difference! :o) Would love to hear from any or all of you, Take Care,
Liz

PS - I meant for this to be short.....oops! ;o)

14 Jan 2002
Name: Richard
Email: kurvenal@hotmail.com
Age: 52
Country: New York, USA
Surgery: Ileostomy
IBD: Perforated diverticulitis
More Info: I have had an ileostomy since age 31. It has not been the best, but as most of us in here I have managed. I would be glad to to email anyone who feels I might be able to provide any info that might help.

29 Dec 2001
Name: Jim Statler
Email: jstatler@ipa.net
Age: 67
Country: McGehee, Arizona, USA
Surgery: Ileostomy
IBD: CD
More Info: Mis-diagnosed with UC May 1963. Was diagnosed w/CD 1975. Ileostomy performed May 1985, w/colon and 18 inches illeum removed, rectum retained. Restructive surgery in 2000 with 4 ft. illeum removed. Problems with inability to absorb vitamin K, B12, D, and iron. Retired June 2001 after 35 years as administrator of a post-secondary technical institute, (22 1/2 yrs. as President). Prior to technical education, 4 yrs. personnel work. In retirement play golf regularly, as weather permits; participate in community, church, and regional activities. E-mail me if you wish to communicate.

24 Dec 2001
Name: Emma
Email: hairwitch@iprimus.com.au
Age: 24
Country: Adelaide, Australia
ICQ: 20708734
Surgery: Ileostomy
IBD: CD
More Info: Just like to talk to anyone else in the same situation.

24 Dec 2001
Name: Steve Airey
Email: steveairey@madasafish.com
Age: 28
Country: Brighton, UK
Surgery: Ileostomy
IBD: CD
More Info: Hi, I've had an ileostomy for 9 years now after putting up with Crohns disease since the age of 13. My life has improved dramatically since and I am very happy. If there is anyone who wants to talk about life etc then by all means e-mail me.

20 Dec 2001
Name: Tattoodave
Email: tattoodave158@aol.com
Age: 34
Country: Toledo, USA
Surgery: Due to have an Ileostomy
IBD: CD
More Info: I'm going to have surgery on Jan 4 2002, to have all of my colon removed as well as my ----, you know, which means they tell me, that I'm going to have to have a Ileostomy as well. Not sure what to expexct. Any info would be greatly helpful. Thank you.

19 Dec 2001
Name: Stephen Foote
Email: sstephenfoote@aol.com
Age: 42
Country: Scotland
Surgery: Ileostomy
IBD: UC
More Info: I had a partial Ileostomy in 1979 but now the they are worried about the risk of cancer. Can anyone give me advice on how to get my head around this?

19 Dec 2001
Name: Pam
Email: p_thebo@hotmail.com
Age: 36
Country: Newaygo, Michigan, USA
Surgery: Ileostomy
IBD: Cancer
More Info: I was diagnosed with rectal cancer on 4/2001. Received chemo and radiation for 6 weeks and colorectal resection in August with an ileostomy. I got an infection from a leak in the colon at the site of the incision. Have had 3 outpatient surgeries to drain the infection and treat with antibiotics. Tomorrow will be going for an enema xray to verify if the infection is gone and whether I am able to reverse the ileostomy. The ileostomy is a loop and can be very painful from leaking under the wafer. Does anyone know of how to correct this or stop it from going under the wafer? I currently use an invert in the wafer, that helps some, but my wafers only last 2 or 3 days, due to the leaking and the pain on the skin. Any help would be appreciated.

9 Dec 2001
Name: Jerry Hanrahan
Email: foxpointer@home.com
Age: 46
Country: Providence, Rhode Island, USA
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: I had surgery in 1983

7 Dec 2001
Name: Sharon Severs
Email: tiny12272002@yahoo.com
Age: 47
Country: Pennysylvania, USA
Surgery: Ileostomy
IBD: Crohns Colitis

7 Dec 2001
Name: Chensay
Email: chensayy@hotmail.com
Age: 31
Country: Pacific, NW, USA
ICQ Contact Number:18367022
Surgery: Thinking About An Ileostomy
IBD: CD
More Info: I was diagnosed with Crohns when I was 16 years old and have had multiple surgeries for fistulaectomies and abcesses. They always come back and don't ever seem to heal. When I was 25 I went into surgery not knowing if I would come out with a Colostomy, Ileostomy or a resection. My GI wanted the surgeon to do an Ileostomy. He said it would make me feel better, but the surgeon said I was "too young to have to deal with an ostomy". He was able to resect me and I have, until this past year, been fine with it. A few flare ups but nothing serious. NOW Ive been having more problems with incontinence, and its not every day... or predictable at all... and I have been experiencing panic attacks and anxiety... and the medication for THAT gives me more diarrhea (imagine that!) so lately I've been just staying home.
I am thinking about going to my doctor and asking him for an ostomy, but its kind of scary and I wanted to talk to someone who has had one... It would probably be an Ileostomy. I just KNOW my quality of life would be better with one, and that I could feel comfortable going into a store without panicking that I will have an accident.... thanks *G*.