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Pregnancy With an Ostomy Contact List - Page 1
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22 June 2004
Name: Karen
Email: kfburk@wpcs.net
Age:39
Country:Missouri, USA
Surgery: urostomy
IBD: spina bifida
More Info: I have had my urostomy 36 years and have done very well with it. It has decided to quit draining and I am awaiting surgery. I am looking for information from anyone who has had a continent diversion done after having had a urostomy. Hoping to hear from someone out there!!
14 April 2004
Name: Meg Kirby
Email: LunaMoonStar1873@aol.com
Age:21
Country:Chapel Hill, North Carolina, USA
IBD:UC
Surgery: J Pouch
More Info: Hi everyone! I had UC for two years. Drugs were unsuccessful at controlling the disease. Three stage operation was done with J- pouch. I am pregnant now 6 1/2 months and wanting to talk to someone who has been in my boat or going through it now.
21 June 2003
Name: Kim
Email: kykarraliv@aol.com
Age: 36
Country: Provo, Utah, USA
Surgery: Ileostomy
IBD: UC
More Info: I am 14 weeks pregnant with twins. Is there anyone out there that has gone through a twin pregnancy with an ostomy? I seemed to be treading new ground around my area. Thanks
17 June 2003
Name: Susan
Email: susan5152001@yahoo.com
Age: 48
Country: Winter Haven, Florida, USA
Surgery: BCIR
IBD: UC
More Info: Had a Brooke for 6 years; age 27-33; had my son w/ a C-section with the Brooke ilostomy; had the BCIR done in 89'. I like it better; have had major leak in pouch;had it fixed; then pouchitis; got it under control; now collar leakage; scheduled to have it fixed this summer; BCIR is still worth it to me.
1 June 2003
Name: Ebony
Email: ebony@ebonymckenna.com
Age: 31
Country: Melbourne, Australia
Surgery: J Pouch
IBD: UC
More Info: Hi all, Well I'm finally pregnant and my first baby is due in November '03. My surgery was 5 years ago, temp ileostomy and J-pouch. I am booked for a c-section to minimise the risk of ruining all my muscles and the pouch. Feel like I'm in unknown territory here. Don't know how the pouch is going to cope with all that squishing that will be happening soon. Would love to talk to anyone who's been preggy with a J-pouch.
10 April 2003
Name: Donna Lacolla
Email: DLACOLLA@PARTNERS.ORG
Surgery: Ileostomy
More Info: hi my name is Donna Lacolla, I've had an ileostomy for about 21 years , I'm 36 & have been married for 12 years, we are expecting our first child in July. I'm very worried that the OB dr's are not familiar with ostomies & what will happen if I need a C section. They don't know what my insides look like. Anyone have any advice?
17 April 2003
Name: Teresa
Email: tjunk@zzip.net
Surgery: S Pouch
More Info: I had UC from 16 to 31, had a total proctocolectomy with an S-pouch. I am doing wonderfully. I would like to know the history from some women who have had pregancies with an this surgery. My surgeon, said if I ever became pregnant that a C-section was mandatory. I would like to know if there are any health risks or damage to the reconstruction inside?
6 April 2003
Name: Joanne Slawson
Email: joanne_last@hotmail.com
Age: 32
Country: Essex, England, UK
Surgery: Ileostomy
IBD: UC
More Info: I am 10 weeks pregnant and know some problems that I may experience during pregnancy, I.E my stomer may need to be reset. However I am interested in any other issues that may come my way in the later stanges. So far everything has been fine, I did get colitis for a bit but it seems to have settled down.
16 March 2003
Name: Lisa
Email: spungegroove@aol.com
Age: 31
Country: Mobile, Alabama, USA
Surgery: Urinary Kock's Pouch
IBD: birth defect/spina bifida
More Info: I was born with Spina Bifida in 1971. I have had a ureterostmy, an illeal conduit, and now (since 1985) have a continent urostomy, Koch Pouch. I love it! I feel like I went from the Pinto to the Cadillac! I had serious recurring urinary tract infections for close to 15 years before getting the Koch Pouch, since then my kidneys and uterers have not gotten worse and I have been UTI free since then. I have had to have stones removed about every 3-4 years. They all have appeared to have formed around the tiny staples that were used to construct the pouch. All in all, my Koch Pouch has been nothing less than a miracle. It made the later part of my teenage years much more bareable. I also have an 11 year-old son. My pregnancy was high-risk and very complicated and problematic, but I have a healthy beautiful son. I hope I didn't write too much, but I just got a home computer and had no idea there were others out there with Koch Pouches for the urinary tract.
21 March 2003
Name: Sue
Email: Billyblocks@aol.com
Age: 36
Surgery: Ileostomy
IBD: UC
More Info: I am 36 years old and have had an ileostomy for 12 years. I am currently 6 mos. pregnant with my second child. My first is 14 years old (needless to say, she was born before my ostomy surgery). I must say that so far being pregnant with an ostomy has been SUPER! I was very sick with ulcerative colitis during my first pregnancy which made it a scary, painful prenancy - so just the mere fact that I am not suffering with that terrible disease this time around has been a blessing. I was a bit worried about how my stoma would react to my growing belly etc. Thus far, it has reacted beautifully. My appliance is sticking great and everything looks perfect. PLEASE don't let living with an ostomy prevent you from experiencing the miracle of pregnancy. I highly recommend it!! PS: FYI-I wear Convatec "Little Ones" (ostomy bags made for infants and children). I like the small, discrete size and they are very, very comfortable. I use a small amount of Adapt paste and prep my skin with Skin Tac-H (works GREAT-very tacky). Just wanted to suggest a terrific product that many adults may not have considered trying.
8 March 2003
Name: Charmaine
Email: jca.saunders@nf.sypatico.ca
Age: 32
Country: Canada
Surgery: Ileostomy
IBD: UC
More Info: I just found out I am pregnant. I have had an ileostomy for 3 years. I have one child (born 3 months before my surgery). I would LOVE to hear from others who have experienced pregnancy with an ostomy.I have a lot of questions.
26 February 2003
Name: Hayley
Email: hayleyannramsey@aol.com
Surgery: J Pouch
IBD: UC
More Info: I am currently 18wks pregnant with my second child. I have suffered from what I thought was Crohns disease from the age of 13 but wasnt diagnosed until I was 21. At the age of 23 I fell pregnant during a time when my Crohns was active. I did have a bit of a time of it during the pregnancy but nothing worse than I had already experiences. I had a vaginal birth which took some time but Jacob was worth every minute of that.He weighed 7.1 lb and was healthy. As others have experienced my Crohns got worse after the birth. However I had a total colectomy and illeostomy in Sept 2000 which left me feeling like a new woman. The following year after finding out that it was more likely that it was UC and not Crohns I was offered and had a reversal.I had the pouch formed in Jan 2002 and I had my illeostomy closed in October 2002 which touch wood has been fine. I was advised to wait at least 12 months before trying to get pregnant.However just before Christmas I was surprised to find out that I was 8 weeks pregnant! A bit of a shock but very exciting.Im very happy about this surprise but quite anxious about the birth.Im not sure of what birth I should have and would be grateful of any advice or experiences from anyone who has an ileoanal pouch.
16 February 2003
Name: Cindi
Email: artisteffie@aol.com
Age: 48
Country: USA
Surgery: Ileostomy
IBD: UC
More Info: I am single and would like to meet some single male ostomates.
11 January 2003
Name: Laura
Email: lombardishewolf@hotmail.com
Age: 36
Country: Vancouver, Canada
Surgery: Kock's Pouch
IBD: UC
More Info: I have had a kock pouch for 15 years with no problems until now. I am 4.5 months pregnant, and am just starting to have a few problems. At about 3 months, I started having some leakage (at times, a whole pouch-worth, so I started wearing a stoma cap. I reconciled myself to wearing it the entire pregnancy. However, my stoma, which has always been flush, is starting to hang out, and the bowel rolls out with it, and gets in a big fat knot and sort of gets strangled by the faceplate. The other day, I was almost unable to get it back in, but finally did with a lot of struggle. Now I'm wearing some cotton pads, with the first one bunched up to try to hold the bowel in. Luckily the leakage problem cleared up, so I've been safe without the protection of a stoma cap so far. But I suspect I'll go through a few changes before I'm done.
Anyone with pregnancy experience with either a kock pouch or BCIR? Much appreciated.
4 November 2002
Name: Susan Smith
Email: susan5152001@yahoo.com
Age: 47
Country: USA
Surgery: Ileostomy, now BCIR
IBD: UC
More Info: I had a Brooke ilostomy at 28; went to the BCIR at 36. Love it for the most part; have had recent trouble with internal bleeding; supposedly from a cathedar; spent 4 days in hospital at Palms; went home; did well for a month; now some bleeding again. BCIR is more delicate than I first thought; I have had this since 1989.
31 October 2002
Name: Diana Martin
Email: dba_1@msn.com
Age: 45
Country: USA
Surgery: Ileostomy
IBD: UC
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.
3 August 2002
Name: Tammy
Email: bear4165@aol.com
Age: 37
Country: Omaha, Nebraska, USA
Surgery: Ileostomy
IBD: UC
More Info: I am currently pregnant with an ileostomy and wanted to talk with someone who has gone though this.
24 May 2002
Name: Misty
Email: quailscott@juno.com
Age: 26
Country: Texas, USA
Surgery: Ileostomy
IBD: UC
More Info: I have had an ileostomy for almost 2 years. My husband and I have tried for a year to get pregnant. Any advice?
21 May 2002
Name: Amy Sussman
Email: amysussman2001@yahoo.com
Age: 32
Country: Cherry Hill, New Jersey, USA
Surgery: J Pouch
IBD: UC
More Info: I had my j-pouch surgery in 3 steps due to toxic mega-colon. The surgery took place in 1991. I have a six year old son. Pregnancy was great and delivered by planned c-section. If anyone has any questions please feel free to write. Also looking for anyone who may have infpormation on probiotics for the treatment of pouchitis. Hope to hear from you soon.
14 May 2002
Name: Dawn
Email: dc32659@aol.com
Age: 43
Country: Illinois, USA
Yahoo Messenger: elle1012
Surgery: Ileostomy
IBD: UC
More Info: I had my Ileostomy surgery when I was 11. I had my son 16 years ago. I had no problems during my pregnacy. I wound up having to have a C-section, nothing to do with my ileostomy. I would be happy to talk to anyone who has questions about pregnacy with an ostomy.
22 April 2002
Name: Kim Best
Email: kimclwbest@yahoo.com
Age: 36
Country: Atlanta, USA
Surgery: J Pouch
IBD: UC
More Info: African American, 1st surgery in 1992. I only have occasional problems with gas. Am pregnant for the 1st time now, I'm due May 7, '02.
13 April 2002
Name: Janice
Email: lawrence1022@attbi.com
Age: 41
Country: Kent, Washington, USA
Surgery: Ileostomy
IBD: CD
More Info: This is my second ileostomy, my first being with the pregnancy of my second child who is now 5. The first I received when it was discovered that I had a fistula right after finding out I was pregnant. I kept the bag for a yr and then was reversed even though the fistula had not closed. The second was done after the fistula began to enlarge and became more active. I was told that it was also temporary and that the fistula could be surgically fixed. That was in November 2001. Since then, the surgeon has said that there was too much disease to even perform the surgery to close the fistula, hence, the reversal is on hold. I feel tricked. The pain of the fistula was not unbearable. I only agreed for the chance of getting rid of the fistula once and for all. Not for the privilege of having a bag long term. Sorry for sounding so morose, but I'm not happy with this.
10 April 2002
Name: Holly
Email: hollymaria@ivillage.com
Age: 30
Country: Virginia, USA
Surgery: J Pouch
IBD: UC
More Info: I am 8 months pregnant with my second child (1st post J Pouch surgery). I would be happy to discuss my experiences with you and hear yours as well.
30 March 2002
Name: Debbie
Email: ushowbo@yahoo.com
Age: 30
Country: Ft. Lauderdale, Florida, USA
Surgery: Ileostomy
IBD: UC
More Info: I had a partial colectomy w/ ileostomy in 1990 at 18 yrs. old for UC. After two more surgeries in 1991 & 1992(adhesions) I got married and (2 years ago)gave birth to a beautiful baby boy. Although I'm basically healthy, I must come to a decision regarding my rectal stump: Do I have it removed and have a permanent ostomy or do I have a have reversal? I would appreciate any advice concerning this surgery. Also, if anyone wants information about my pregnancy, etc. feel free to contact me. I'd love to hear from you.
1 Feb 2002
Name: Suzi
Email: suzijp11@optonline.net
Age: 32
Country:Flanders, New Jersey, USA
IBD:UC
Surgery: J Pouch
More Info: Had UC for only 3 months, colon perforated, emergency resection then within 2 weeks complete colonectomy with bag, 3 months later j-pouch. Now starting my 3rd month in my first pregnancy with LOTS of questions/concerns for anyone who ever went through pregnancy with j-pouch.
18 Jan 2002
Name: Michelle Brekke
Email: michellebrekke@hotmail.com
Age: 29
Country:Bloomington, Illinois, USA
IBD:Familial Polyps w/rectal cancer
Surgery: Ileostomy
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.
17 Jan 2002
Name: Jody Jensen
Email: jody.jensen@juno.com
Age: 28
Country:Sacramento, California, USA
IBD:UC
Surgery: None yet
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.
14 Jan 2002
Name: Kelly
Email: NYKelly2000@yahoo.com
Age: 29
Country:Seattle, USA
IBD:UC
Surgery: J Pouch
More Info: Hello fellow people who know what it feels like to live with one of the worst disease's there is!
Well I have a long history. I was told I had colitis when I was seven years old. I have tried many drugs, sugerys, side effects, depressed days. I now have a jpouch. I guess I am doing ok. I am still here!!! well the thing I am interested in is trying to have a baby. Any info.? would be splendid. My husband has been god sent. Through having a bag ect. I wish this one thing for him (and me)! Want to chat??? A friend who understands? drop me a note.I would love to hear from everyone!
1 Jan 2002
Name: Holly Johnson
Email: hollymaria@ivillage.com
Age: 30
Country:Richmond, Virginia, USA
IBD:UC
Surgery: J Pouch
More Info: I am due with my second child (1st child post-J pouch), in May 2002.
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.
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.
Name: Jennie
Email: rjhill@microed.com.au
Age: 45
Country:Brisbane, Australia
ICQ: 104062129
IBD:UC
Surgery: Ileostomy
More Info: I am 45 y/o female, married with 2 girls aged 9 and 10. Had my ileostomy 25 years ago and have never had any problems at all during this time except it took me 13 years to get pregnant and then finally 2 girls in 12 months.
Had no problems with being pregnant or having the babies. Both were caesarians.
I am fit and well and work in a very physical job and my life goes on as normal and I hardly ever think about my bag until it needs changing. I have a wonderful husband who is a paramedic and my life is wonderful. Hope i can help someone else who may wish to chat.
Name: Jennifer
Email: mjjcase@cs.com
Age: 33
Country:Washington, USA
IBD:UC
Surgery: Ileostomy
More Info: HI, I had Ulcerative Colitis form age 11-20. I then had no choice but to have the Ileostomy surgery. It saved my life, that was 13 years ago and It has gone very well. I have been married for ten years, and we have a 4 year old child. If there is anything I can help with dating, pregnancy, etc, please email me. Thanks, Jennifer.
Name: Maria
Email: maria@btinternet.com
Age: 36
Country:London, UK
IBD:UC
Surgery: J Pouch
More Info: Approx 4 years with ileostomy, then J-pouch 18 months ago, hard at first but great now, almost like before UC. Younger brother had same done. Older siblings didn't get this, why is that!! Became pregnant with second child while with ileostomy - no problems whatsoever - except when giving birth midwife tugged at ileostomy bag saying 'how do I get this off!' Well you've got to laugh.
Did have anal irritation with J-pouch for a year before Immodium/loperamide capsules suggested, did the trick. St. Marks, London, great place to get your surgery done!! Prof. Nicholls brill, as are the stoma nurses. Here if can be of any help at all.
Name: Sue Bursey
Email: smbursey@unidial.com
Age: 42
Country: Westminster, Maryland, USA
Surgery: Kock's Pouch
IBD: UC
More Info: I had twins in 1988. Needed invitro(Pouch in the way).
My ilestomy is almost 21 years old, valve problems just started along with pouchitis. Possible near future remaking the valve. Looking to talk with someone who has had a new valve constructed. Also what is the differences between Koch pouch & BCIR?
Name: Jeni Wade
Email: desert_rose_72@hotmail.com
Age: 28
Country: Arizona, USA
ICQ: 103727006
Surgery: J Pouch
IBD: Familial Polyps
More Info: I had surgery 13 years ago and now have one child, 4 years old. My pregnancy had some minor problems but all in all it was almost a normal pregnancy and delivery. If I can help anyone with any questions feel free to contact me!
Name: Rose
Email: iamscooby2@hotmail.com
Age: 27
Country: Hopkins, MN,USA
IBD: UC
Surgery: Ileostomy
More Info: I am 9 1/2 weeks pregnant and have had an ileostomy since I was 12 years old. My partner and I have not used any birth control for nearly 8 years and were surprised when I found out we are having a baby (I had alot of scarring with all 4 surgeries). I am already on bed rest and have IV fluids I give myself for a few hours daily due to dehydration and am having a hard time keeping my weight up. I would love to hear from anyone who has had similar problems as I feel so alone at this time. Finding this web site was the greatest birthday gift to myself today!
Name: Toni
Email: tonuzza30@hotmail.com.au
Surgery: Ileostomy
More Info: Hi, Wondering if you could help me!!!
I'm a 30 year old Illeostomate and I'm about to have surgery on my tubes that were ruptured during an eptopic pregnancy. I'm a little anxious as it has been 2 and a bit years since the illeostomy opperation which i do not regret having as it was a success and left me with out suffering. However the thought of surgery again is a little frightning doctors have advised me of complications as there is with any surgery, but because of my previous operation i am a greater risk. However my husband and i really do want to have children... has anyone else been in a similar situation that may be able to offer some encouraging advice.
Name: Nancy
Email: jeffrey@windsor.igs.net
Surgery: Ileal conduit
More Info: Can anyone tell me if they have had a laproscopy with an ostomy? Thanks.
Name: Chris
Email: cep2968@aol.com
Surgery: Ileal conduit
More Info: I'm wondering if anyone out there has an ileo conduit, the kind made of bowel and they have to use a catheter to drain? I drain mine through my navel. I use to have a urostomy bag, had that since I was 3wks old (I am 32now). I got this ileo conduit in Indianapolis in Oct of 1988 and it's a God send. I was told by the physicians that I was one of the first to drain from the navel. It's hardly noticeable at all and I've had no problems except for an ocassional infection (maybe 3) in the 11 years I've had it.
I also received a kidney transplant in Nov 1993 and recently got the ok to get pregnant. I was just wondering if anyone out there has gotten pregnant with this type of ileo and how everything worked as far as things stretching and such. I left my e-mail please respond, I'm looking forward to hearing from you.
God Bless and thank you!!
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