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Your name: Tim
E-mail address: tim532861@verizon.net
Country: USA
Comment or story: I went for reversal of Colostomy on June 5th, but woke with an ileostomy. DR said my colon needed more time to heal. I would like some help in ways to reduce output during sleep as I wake in the middle of night to full bag. I live close to Los Angeles :)

Tim
Sunday, June 28th 2009 - 10:16:09 AM
Your name: Valerie G
E-mail address: valeriegnes@yahoo.com
Country: california USA
Comment or story: Stoma is having a problem. Noticed small nods on the edge of stoma. They bleed easily upon touch. A lot when wearing tight clothes. Stoma is flat 7/8 in size. Is this normal?
Thursday, June 25th 2009 - 09:35:12 PM
Your name: Sherri
E-mail address: s_nelson@live.com
Country: USA
Comment or story: i was diagnosed with rectal cancer December 2002, had my tumor removed, and ended up with an ileostomy. i had a reversal in 2005. i encountered many problems after i had the reversal. I am doing much better now, but I have to watch my diet closely. I would be happy to help anyone who is having problems after their reversal or with their ostomy. I have been through it all.
Tuesday, June 23rd 2009 - 12:16:04 AM
Your name: Stephanie
E-mail address: stefany1278@yahoo.com
Country: USA
Comment or story: I just had my baby 3 weeks ago, and had to have an emergency D&C. During that surgery something happened to my colon. It grew gangrene?? overnight and I had to have a ileostomy. Perfectly healthy all of my life -- it was amazing for something like this to happen. I have been having a hard time dealing with it. I feel like life has to change completely. I am up for a reversal in 3-6 months. Any advice for me. I am a newely wed and a new mom. Very sad time for me.
Monday, June 22nd 2009 - 08:16:03 AM
Your name: Delayne
E-mail address: flonoah80@yahoo.com
Country: USA
Comment or story: Hi, I am 47yrs old. I had a hysterectomy in 2006, that ended up with me having a rectacele operation in 2007. The Dr. that repaired the Rectacele left 2 sponges in me. He noticed that he did before I left the or. Four days after I came home I went back to the hospital due to an infection that left me with to fistula's. In '07 they repaired one ,but the other one didn't take. In 08 I had 2 more surgeries that didn't work. On 6-10-09 I had Ileostomy surgery & another fistula repair in hopes of a reversal.
Thursday, June 18th 2009 - 02:30:45 PM
Your name: Evelyn
E-mail address: evelynrachel@hotmail.co.uk
Country: England
Comment or story: I am a 20 year old student, diagnosed with Ulcerative Colitis and IBD when i was 11. I had an Ileostomy with complete large intestine removal 2 years ago and had it reversed in the same year. Since then I've experienced the odd problem but am really healthy but i would LOVE someone a similar age to me to talk to about ileostomy related stuff!
Wednesday, June 17th 2009 - 12:49:26 PM
Your name: Carolynn
E-mail address: cartom124@yahoo.com
Country: USA
Comment or story: I just had a permanent ileostomy done on May 11th this year. I am not coping very well. I am experiencing a lot of leakage (6 in one day) and don't know what I am doing wrong. Today I received barrier wafers to use in place of paste. I feel all alone out here and found this web site and thought maybe somebody could help me with a little moral support. I am not dealing with the leaks and weepy skin as I think I am doing something wrong. I had my surgery done through the VA and now feel like I was left out here all alone with no support or help. Didn't know if maybe this site might get me through the rough times. Thanks.
Saturday, June 13th 2009 - 04:47:25 PM
Your name: Helen
E-mail address: hbrules@optusnet.com.au
Country: Australia
Comment or story: Hi
I have an ileostomy only 4 months now. Been struggling, but now finding it a little easier to cope. Diet is still a problem, but working on it.
Saw surgeon who thinks I now have gallstones and if confirmed wanted to do 3 in 1 surgery. Remove stones, reverse ileostomy and fix hernia.

Would like to hear from people who have you had a reversal? Is there complications? Hard adjusting back. My problem is the large intestine has been removed and with only the small intestine "will need to know where toilets are real quick"

Any advise would be welcomed Thanks
Cheers
Helen
Friday, June 12th 2009 - 04:42:37 PM
Your name: Joanne
E-mail address: Cyberblossom@msn.com
Country: usa
Comment or story: Hello everyone. i'm a 47 year old female whos had an ostomy since 1999 due to rectal cancer. I've had a couple attempts at reversals which were nightmares so i'm with my baby for life. I like to read,watch tv, movies, internet,and needlework. i hope to start riding a bike again soon. I'm hoping to meet people here and maybe make some new friends. If you want to laugh,cry or vent thats fine with me cause we all need to do that. I will answer all that write. Take Care.
Friday, June 5th 2009 - 06:00:02 PM
Your name: Joanne
E-mail address: Cyberblossom@msn.com
Country: USA
Comment or story: Hi everyone. I've had my ostomy since 1999 due to rectal. I've had 7 surgeries and they were nightmares so now i have my baby for life. I have the usual problems with my baby at times but I've learned to deal with it. I enjoy reading, watching TV, movies, animals and needlework. I also hope to start riding a bike again this summer. I'm looking to make some friends. Laughing, crying, venting and sharing is what I'm here for. Age doesn't matter. I'll answer everyone. Take care and God Bless.
Friday, June 5th 2009 - 05:44:47 PM
Your name: Rhodri
E-mail address: r_o_fullard@hotmail.com
Country: UK
Comment or story: I am writing on behalf of my mother. She recently had a reversal and is now struggling to find a diet that works for her. Do you have any recommendations? Thanks.
Wednesday, June 3rd 2009 - 03:17:07 PM
Your name: Sue
E-mail address: tdmisty20@aol.com
Country: USA
Comment or story: My best friend and lover was diagnosed with rectal cancer over a year ago. The struggle has been a difficult and long one and its not over yet. We wait again. They found a We have had a very long year. I can feel him trying to pull away. Its like I annoy him by being joyful. I do not know how to be . Has anyone had the same feelings or experienced the same thoughts. Sue
Tuesday, June 2nd 2009 - 05:29:33 PM
Your name: Lori
E-mail address: karmalite1@yahoo.com
Country: USA
Comment or story: Had a pull thru changed to a perm Ileostomy after rectal cancer found. Rectum, colon and most of lower intestine removed. This all started from Crohn's 20+ years ago with complications of Anal-vaginal fistulas. Have had ilieo since 2006. Best thing I ever did.

I'm 46, partnered, 2 cats, one dog, one more on the way as soon as we the right one. Love my job and photography
Saturday, May 30th 2009 - 09:18:49 PM
Your name: Joanne
E-mail address: Cyberblossom@msn.com
Country: USA
Comment or story: Hello every one! I've had my ostomy since 1999 due to cancer. Had 2 failed reversal surgeries due to complications and i also have an inactive stoma thats been giving me a lot problems lately, nasty discharge, pain and some bleeding. Anyways I'm looking to make some friends. I like to read, watch tv, movies, biking, walking, animals and needlework. I'll answer all who write. Take Care
Thursday, May 28th 2009 - 01:18:12 PM
Your name: Joanne
E-mail address: Cyberblossom@msn.com
Country: USA
Comment or story: Hello. I've had my ostomy since March 1999 due to cancer. I'm 47 years old. I've had 2 failed reversals so now my baby is back with an inactive stoma on my left side that is giving me grief. In the last couple months i've been having bad pain , brown discharge and bleeding from my inactive stoma. The MD at the ER ordered at CT Scan which showed colitis. Does anyone know anything about this? What causes this? I'm scared cause this keeps happening and I was told that I might have a Bezar. Other than that everything with me is fine. Anyone who wishes to write to me is more than welcome to do so. Its always nice to make friends. Before i forget does anyone know of any Chat Rooms for Ostomates? thank you for listening to me . Take Care and God Bless you all.
Wednesday, May 27th 2009 - 08:38:27 PM
Your name: Bruce Penta
E-mail address: bkpenta@yahoo.com.au
Country: Australia
Comment or story: I am 47 and had my original ileostomy done 2 1/2 years ago after suffering ulcerative colitis. 2 months ago after suffering for the six months prior with constant blockages and extreme pain, I was diagnosed with a peristomal hernia and was rushed to hospital for an operation to repair the hernia and move my ileostomy to the opposite side of my stomach.
As a warning to others you must protect this area of your abdomen and use a belt or as I have now found, some support undergarments when walking, working or exercising of any kind as having this operation means going through it all again and now my stoma is different and is flat meaning I have had to get used to a new method of changing and dealing with my stoma.
Please look after yourself because as they say " Prevention is better than Cure!"
Keep well and live long!
Bruce
Wednesday, May 27th 2009 - 02:31:48 AM
Your name: Angela
E-mail address: tajpurplerayn@netzero.com
Country: US
Comment or story: Hello I have had an ileostomy for 22 years now due to Familial Polyposis. I just came across this site again after being off it for a few years. I would really love to talk with people that have the same or similar situation
as I. Maybe we can share tips on how to make it that much easier.
Tuesday, May 26th 2009 - 07:29:13 PM
Your name: Jan Brunton
E-mail address: janbrunton1951@yahoo.com
Country: USA
Comment or story: The article in May 2009's issue about medication and the meds not being absorbed due to no colon, is a good one for everyone to read. I'm 58, had my ileostomy when I was 19 - and for years, I could never figure out why vitamins made me sick, went right through me and caused other situations. I finally figured out the problem was due to the fact they were time-release meds. Like my doctor said - those of us with "rapid transit systems" just can't take time-released meds. I have to take meds for type-II diabetes and my doctor always makes sure he writes the prescription for "non-time release" meds - and it makes a huge difference.
Tuesday, May 26th 2009 - 09:31:47 AM
Your name: AC
E-mail address: alcollins22@hotmail.com
Country: United States
Comment or story: good morning......I have an ileostomy due to a surgical error. I have an 'intact/unused' healthy colon. Does anyone have any suggestions on keeping this totally intact healthy, but unused organ in good healthy and hopefully workable condition? I want to keep open any and all opinions if I ever decide about a reversal. Thank you.
Tuesday, May 26th 2009 - 06:26:26 AM
Your name: Trey
E-mail address: co2168@hotmail.com
Country: USA, West Virginia
Comment or story: Hi, my name is Trey and I was diagnosed with UC back in 1997, at the time I was 21. I battled with it for a few years until April of 2000 when I had to have surgery. I'm 32 now and I had to have a permanent ileostomy. Luckily I have not had any problems with it to date. I am thankful for the surgery and have come to grips with it while I was in the hospital. My quality of life with it has been much better than before surgery. Before my surgery I was constantly tired and was always having to go to the bathroom. Now I have alot more energy and I stay active. Its so nice not having to worry about where the closest bathroom is.
Tuesday, May 26th 2009 - 04:49:55 AM
Your name: Virginia
E-mail address: monkeytrouble@shaw.ca
Country: Canada
Comment or story: I'm a 43 yer old single woman and I've had my ileostomy for 10 years thanks to Crohn's disease. I have been on Remicade now for 8 years and haven't been sick a day. The MD's have now said I can try for a reversal of the ileostomy, and I would love that more than ANYTHING. Being single with this thing is hard....anyway...does anyone have a similar experience that they would like to share? Please...any guidance would be appreciated. Thanks!
Monday, May 25th 2009 - 10:30:53 PM
Your name: HELEN
E-mail address: hbrules@optusnet.com.au
Country: Australia
Comment or story: Hi I am very new at this. 3 months ago I had an Ileostomy. This was a SUDDEN diagnosis, no prior symptoms whatsoever. I am currently going through the various stages of accepting WHAT has happened to me "Bowel Cancer".
I would like to hear from other people who have had similar surgery. Frankly I am not coping as well as I would like. So I decided I must find support from people who are in similar circumstances to myself. How you coped? Are you coping? Does it ever get any better? At present I am hating (strong word to use) but accurate in describing my feelings with having ileostomy. The joys of the leakages. The trauma of the surgery. Disgusting body (carving) appearance. The dramatic change in lifestyle. The Foods you can and can't eat. All of these things. The WHY me factor.
Hope someone out there can be of some help.
Thanks
Thursday, May 21st 2009 - 04:55:16 AM
Your name: dezi
E-mail address: dezioil@yahoo.com
Country: usa
Comment or story: hi i was looking to see what the oldest ileostomy was i had mine when i was 12 and am now 52. while looking this up i found this site thought i was all alone. i originally came from Boston now in Maine if any one would like to chat hit me back maybe exchange stories!
Sunday, May 3rd 2009 - 07:39:04 PM
Your name: Elizabeth
E-mail address: elizabethjablonski@yahoo.com
Country: USA (Texas)
Comment or story: There is no way I would be able to tell my whole medical story. It would be a novel. I have a permanent ileostomy. I have had 8 major abdominal surgeries, with the last one being in July of 2006 which was a colectomy with an ileostomy formed. I still suffer chronic pain but am now able to expel my waste (gross, I know). Anyway I am a 43 year old female about 30 miles south of Houston and am hoping to make some friends. I am on disability and my Husband works a lot and I very "desperately" need friends. I am trying not to sound too pethetic:)
Saturday, April 18th 2009 - 10:43:06 PM
Your name: Claude
E-mail address: claudealvin@aim.org
Country: USA
Comment or story: I've had my ileostomy for just over a year now. I needed to have the doctor go back in a week to the day after my operation to correct a second blockage. When I awoke, my stoma had changed from 1 1/4" diam. to 2". It has led to problems, mainly a 'prolapsed (I think that is the word) that causes the stoma to extend 7", all the way to the bottom of the bag, when I'm out of bed. My doctor says that this is something that he 'may' have to correct at some time in the future! I have read others say that a 3 or 4 inch prolapsed is too much! Is my Doctor crazy, or what.
Is there anyone else that has had such a serious prolapsed, that can offer advice to me?
Tuesday, April 14th 2009 - 06:23:59 PM
Your name: Patty
E-mail address: pjsmeltzer@comcast.net
Country: USA
Comment or story: This is the first time I have ever been on this site. I had emergency surgery in May 2008, which is why I am alive today, but I ended up with an ileostomy. It has been almost one year now. For weeks after the surgery I was having rectal pain which I reported to my doctor, who pretty much blew it off. The pain was severe & would last for 10-15 minutes at a time. I then started passing this foul smelling mucus. Once the mucus passed, the pain would subside and I was OK for a couple weeks or more. I had an endoscopy performed in February 2009 & was told that I have severe proctitis and had to use steroid enemas. It helped with the pain for a few weeks, but the rectal pain & spasms started again, but now I am passing masses or lumps. I have to tell you, I hate having this ileostomy, but I have to learn to live with it.
Sunday, April 5th 2009 - 06:34:18 PM
Your name: Robin
E-mail address: miss_robin82@hotmail.com
Country: USA
Comment or story: I was first diagnosed with ulcerative colitis when I was 13. Due to it being a severe case, my colon was removed 2 years later. I tried the j-pouch route for 5 years, but I stayed sick with it. I got my permanent ileostomy when I was 20 years old. I am currently 26 years old. If anyone has any questions or would just like to talk, feel free to email me. Though I am young, I have been through it all. I've had ten surgeries all together and my doctors have re-diagnosed me with Crohn's because of complications (fistulas, tumors, etc.) that I have developed throughout the years.
Sunday, March 29th 2009 - 11:32:44 PM
Your name: Peter
E-mail address: pjshipley@cbe.ab.ca
Country: Canada
Comment or story: original ileostomy surgery in 2003. j-pouch struggles for almost 2 years. back to ileostomy in 2005. doing well with the exception of blockages every couple of months since 2007, that last approx 24-48 hours. one stubborn external hemmy I can't seem to get rid of (any ideas?). considering removal of j-pouch and going with perm ileostomy (any concerns/considerations?). 
Wednesday, March 25th 2009 - 12:23:28 PM
Your name: Helen
E-mail address: bubs_twin@yahoo.com
Country: USA
Comment or story: I have an ileostomy and an Urostomy. Am trying to find others that have problems still with their bladder/kidneys
Tuesday, March 24th 2009 - 11:54:21 AM
Your name: Pamela
E-mail address: pmuir@pcc.edu
Country: USA
Comment or story: Hello - I've had my ileostomy since June 2001 due to ulcerative colitis...whoever came up with that disease had a really sick sense of humor. However I'm still here to kick it around so I can't complain too much. I live with chronic pain and no I'm not referring to my husband of 40 years. I'm 59, retired from a 25 year career in higher education. My hobbies are gardening, writing, my grandchildren (who live with us), life in the not-so-fast lane and having a good time. I love laughter; hearing it and my own. I'm an admitted chocoholic as long as it isn't the cheap stuff. I'd love to hear from some light-hearted folks and others too as long as you understand that eventually I might make you laugh. Cheers!
Tuesday, March 24th 2009 - 10:40:00 AM
Your name: Shirley Mills
E-mail address: curleymills@eircom.net
Country: Ireland
Comment or story: Hi have loop ileostomy and have had a few problems. Leaks and scalding of skin. Doctor wants to make it permanent and take out colon and close rectum. Nervous now the permanent word is mentioned. Cant see myself getting use to it any similar stories would be welcome.
Tuesday, March 17th 2009 - 04:04:55 PM
Your name: Brandon
E-mail address: brjgibso@gmail.com
Country: USA
Comment or story: I am 25 years old, I have had an Ileostomy for 4 years now, after having a severe fight with ulcerative colitis for 3 years, I had to have my colon taken out due to toxic mega colon. At 20 years old I could not believe this was going to happen to me, I had a J-pouched placed and was ready for reversal, they did reverse it. It was horrible after the reversal, my J-pouch just did not take right. I had to have an ileostomy placed again. This time permanent, I am not happily engaged, graduating college into a very scary real world finally. I would love to talk with anyone and answer any questions they might have about this. I have also had three different surgeries to have my ostomy reset, due to my high active lifestyle. Please do not hesitate to send me an email! Brandon
Tuesday, March 17th 2009 - 01:40:06 PM
Your name: Marilyn Powers
E-mail address: tbackbaby863@embarqmail.com
Country: United States
Comment or story: I am going to have surgery on march the 25th for rectal cancer and the doctor told me i need to wear an ileostomy bag and would lik to know why because I read up on it and the information said I only need an ileostomy bag if both my rectum and colon is being removed
Thursday, February 19th 2009 - 03:35:10 PM
Your name: Don
E-mail address: dcmc40@cox.net
Country: USA
Comment or story: I am 67 years old and have had an ileostomy since December 2007 after having my bladder removed due to cancer. I might add that I am also a laryngectomee since July 2005. I am doing ok with the exception of having a lot of trouble with the wafer holding my bag coming unglued and leaking like crazy! Has anyone else had this problem and if so how are your dealing with it? Mine always leaks in the same place, next to my belly button. I think the nurse who marked me for the stoma area placed it too close to my belly button and it is right on my belt line. Nothing I can do about that but just wondering if anyone else has the same problem. Looking forward to hearing from someone.
Thursday, February 19th 2009 - 02:17:45 PM
Your name: Larry
E-mail address: kb9nph@juno.com
Country: USA
Comment or story: Have had my ileostomy since 1965, with a couple surgeries along the way. Our son has a serious case of Crohn's and has to have infusions every 6 weeks. Now at 62 it seems to be slowing me know a bit, but also retired, guess I can't complain. Be glad to chat with anyone and exchange thoughts as friends.
Friday, January 30th 2009 - 09:06:02 PM
Your name: Kate
E-mail address: katenkaboodle@aol.com
Country: US
Comment or story: Hello, I am 58 and have had an ileostomy since 1997 due to a nasty case of Crohn's. I had undergone 7 bowel resections prior to my ileostomy. Had it re-done in 2000. I have to admit that I have been better off with the bag. I can eat things hat I couldn't before, and have few blockages now. I have recently had breast cancer and bilateral mastectomy. Like I needed another disease!! The chemo and radiation were very hard for me, but made it through. I, however, was never more glad to have my friend Hal (my stoma) than I was then. The diarrhea for everyone else in the room was disastrous, for me I just went to the rest room and emptied. I do have a major problem with weeping skin and leakage. My wafers only last, at best, 2-3 days. I usually don't mind Hal, all my friends and family appreciate the fact that if I can laugh about a bag and no boobs, you can laugh about anything. I would love to hear from any others who would like to share a laugh or some advise (I can give as well as take advise)
Family and friends are great, but nothing is like someone who knows what its like. Would like someone to commiserate with.
Wednesday, January 28th 2009 - 02:08:51 AM
Your name: tina
E-mail address: tolseth@yahoo.com
Country: united state
Comment or story: Hi my name is Tina and i have an ileostomy and have lived chronic pain in rectum now they are going to remove my rectum can anyone that has had it done email me and let me know what going to happen
Wednesday, January 28th 2009 - 12:15:42 AM
Your name: Julie
E-mail address: milminegang@gmail.com
Country: USA
Comment or story: I have visited the site before and wanted to touch base. I have both ostomies. Placed on two separate surgeries. I have them because of cancer (leiomyosarcoma)so they are permanent. No biggie except for the gas. I hate the big puffy bag. So anyway I have a big bulge around the colostomy. It goes down sometimes but is uncomfortable at times. Does anyone else have this? Doc says it could be a small hernia. I wonder if it could be fixed? Would appreciate any info. Thanks Julie
Tuesday, January 27th 2009 - 04:16:56 PM
Your name: Tammy
E-mail address: ral293@hotmail.com
Country: USA
Comment or story: I am looking to get in touch with the Penpal:
Robbie Keenan
Country: England
I want to visit with you if possible! I also had my surgery due to family disease FAP. You stated your father & uncle had this also?
When I was about 7 or 8, I started having health problems. My mother and father divorced when I was 3 and I knew nothing of the disease, because my mom didn't know enough about it. When I was 20, I couldn't gain weight & couldn't keep food in me for long. Doctor's found a lymph node in my bikini area & the results were stage IV colon/rectal cancer.
My grandmother, father, uncle, aunt had the disease. My son & I have it.
That was 1990.(I am a young 40's gal!) This disease is only 1% of all colon cancers. We are a rare bunch & I would love to chat with Any One who has the disease in their family.
Thank you for reading & I look forward to visiting with anyone who contacts me.
Tuesday, January 27th 2009 - 11:08:27 AM
Your name: Ned Brooks
E-mail address: nedbrooks@cox.net
Country: U.S.
Comment or story: I have an ileostomy that it turned out could not be reversed and there for the anus is still open. Apparently the anus was damaged when the rectum was removed and now from time to time it leaks mucus and causes irritation. It had not leaked for a long time, but a few days ago it started leaking constantly. Doctors, including my surgeon don't seem to have the slightest idea what to do about it. I use a sanitary pad to catch the gook, but it is a real pain. Yes, I have tried all kinds of barrier creams and conclude I just have to live with it.
Tuesday, January 27th 2009 - 08:37:43 AM
Your name: Rosana
E-mail address: rosanalic93@hotmail.com
Country: USA
Comment or story: Hi! :) I am 45 years old, have an ileostomy since 2002, it will be permanent, I was diagnosed with a weird congenity disease were my intestines got paralyzed...I'd like to meet people to go out, have fun, travel, live my life easier...with people who understand   this kind of style life "we" have to have and maybe fall in love again knowing that an ileostomy will not be a trouble or an excuse to run away...I live in Fort Lauderdale, Florida
Hope meet any one soon!!!!
Saturday, January 24th 2009 - 10:27:00 PM
Your name: Jason
E-mail address: jasonpr@sbcglobal.net
Country: USA
Comment or story: I was diagnosed in 1998 with UC. Was placed on meds, after meds. My doctor told me at some point in time i might have to have surgery. Well August 07 my colon ruptured in 3 spots and had to have emergency surgery. Well know i am stuck with my little friend on my side and 6 cm of colon left. I have looked at options of what to do. Just not sure what route to take. I have adapted to my little friend pretty good. I still do a lot of stuff that i did but some stuff i am afraid to do yet.
Tuesday, January 20th 2009 - 10:49:44 AM
Your name: Vickie
E-mail address: hornfamily2910@tx.rr.com
Country: USA
Comment or story: Hello. I am a 60 year old female who was diagnosed with rectal cancer in April, 2008. Doctors removed the tumor and performed an ileostomy in July, 2008. Three months after that, I had my reversal. I am experiencing non-stop diarrhea which I attribute to the fact that I am still receiving chemo treatments. However, I am also experiencing bowel movement leakage from the uterine area. If any of you other women have experienced this I would love to hear from you. Thanks so much!
Monday, January 19th 2009 - 01:58:14 PM
Your name: Barbara
E-mail address: bmroc@msn.com
Country: USA
Comment or story: I have had an ileostomy for over 20 years and I am having problems with Active Life product. If anyone else is having a problem with leakage in the seams - please contact me. Also, please recommend a comparable product...one that does not have a quality control problem! Thanks.
Saturday, January 17th 2009 - 01:46:00 PM
Your name: Kristy
E-mail address: babyd_16@hotmail.com
Country: USA
Comment or story: I am a 22 year old female. I have an ileostomy and have had one since the age of 13. I was diagnosed with Ulcerative Colitis at age 11. I had a total colectomy. I was reconnected for a little over a year. My experience with being reconnected was horrible. I hated it. You will have little to no control over your bowel movements, so accidents are frequent. I was in middle school and high school with this. It was also very painful to use the bathroom after being reconnected. After reading so many stories about people wanting to or going to have that surgery, I had to write this. I would not recommend it. I had my rectum removed from cancer cells in my rectum at age 16, after being reconnected. I wouldn't give up my ileostomy for anything to be reconnected again. It was the most painful year of my life, even including the 2 years I had ulcerative colitis and was trying medicine. If anyone has any questions or comments please feel free to e mail me and I will write anyone back.
Tuesday, January 13th 2009 - 11:21:42 PM
Your name: Kenny Kaufman
E-mail address: shoedog100@sbcglobal.net
Country: USA
Comment or story: Just wondering if there are any other competitive bodybuilders with ileostomies or colostomies.
Monday, January 12th 2009 - 05:34:47 PM
Your name: Ruth Martinelli
E-mail address: jacksparico@yahoo.com
Country: Florida, USA
Comment or story: I had 4 operations,1st bowel blockage operated 2 times on small intes.2 times link, had 3rd surgery, have open wound vacuum machine for faster healing. Have ostomy bag, have a loose bowel, seem to be getting dehydrated quite often. I watch what i eat & drink lot of liquids, not seem to be getting any stronger need some good advice.
Thank you
Ruth
Sunday, January 11th 2009 - 11:34:09 AM
Your name: John
E-mail address:
Country: USA
Comment or story: I had surgery back in August for Colon rectal cancer. I now have a temporary Ileostomy bag. I have had problems for about two months with leaks and very bad skin irritations. A wonderful and smart ostomy nurse at a Staten Island hospital helped me. For the leak she suggested a Convex appliance which so far is working for two weeks. I had each bag on for five days with no leak. The burning and irritation that was keeping up for hours and causing very bad discomfort was finally solved by using Triple Dye applicator made by Williams Labs. This used on babies Umbilical cords. It stopped the burning and prevents infection and is antibacterial. It also helps heal the skin. Hope this helps.
Tuesday, October 28th 2008 - 12:38:43 PM
Your name: Mike
E-mail address:
Country: USA
Comment or story: Just reaching out for advice on going back to an Ileostomy after having an internal pouch for 15 yrs. Some good, but the last 4-6 have been rough. Now, I have CD as well it appears. Took a treatment of Remicade, but did not like the side effects and they scared me of the potential other ones. It leaks some and I also have chronic pain in the Sac.? joint and down both legs. I have to take strong pain meds just to be able to get out of bed and be able to function.
Anyone had these symptoms with an internal pouch then lose then after removing the pouch. I've had a few off the UOAA Forum mention it. I am trying to find out as much as possible. Thanks for the help and hopefully I can return the favor. God Bless You and Thank You, Mike
Tuesday, October 28th 2008 - 12:38:43 PM
Your name: Janis
E-mail address:
Country: USA
Comment or story: I had an emergency Ileostomy in Dec. 2007 to save my life. I adjusted very well to "Oscar" 3 months later I was able to have it reversed, the reversal was so much worse then I could have ever expected. Because of the 2 surgeries I was left with an incision hernia ( I vomited so much I tore the abdominal muscles) and just had surgery from that and I am still having constant BM's all day and all night, am trying the fiber now and take a lot of Imodium, when does it get better?
Thursday, October 23rd 2008 - 12:38:43 PM
Your name: Thea
E-mail address:
Country: USA
Comment or story: My 77 year old mom had an ileostomy in 2001 from an emergency ileostomy due to Duke's Cancer. I am trying to help her with a decision to reversal. It's ultimately my decision as she is now suffering from dementia. Where she once was handling everything perfectly, since July 2008 she now removes the bag and doesn't realize anything is wrong. Her surgeon cautions about infection from the reversal. Can anyone advise on infection problems from the reversal? Haven't seen this addressed so am hoping is precautionary on his part?
Thursday, October 16th 2008 - 12:38:43 PM
Your name: Judy
E-mail address:
Country: USA
Comment or story:  IN 1983 I was 29, had UC, I started out with a j-pouch which was so new I was the 12th person to be operated on, that got infected had a koch Pouch done, that too became infected, finally in 1987 I has a permanent bag. I was married to a minister, we are now divorced, I have since re-married and have 5 grandchildren going on 6. My problem is have leakage out of my rectal area which is closed, my incision, and my naval. I think I need a revision, but am scared to death since I have had close to 20 surgeries by a well known rectal surgeon in San Francisco. Now my belly button has an awful leak with an awful smell, last time it began bleeding. No one knows how to help me, I am on state insurance which no doctor wants to be involved with. I have had 5 stomas, the last on my left side. Could I have fistulas? On medication for chronic pain. Also anemia & low thyroid.
Monday, October 13th 2008 - 12:38:43 PM
Your name: Hillary
E-mail address:
Country: USA
Comment or story:  I am 26 and for four years have been battling GI problems. I have had 6 diagnoses by as many doctors, as no one can agree on what is wrong with me. I had a loop ileostomy done in April 2008 and I hate it. I had one previously in 2006 and then had it reversed, as my conditioned improved. But not for long. My current doctor says I need to have my rectum removed and my colon pulled through to make a makeshift rectum. He says it is the only way that I will get better. I have a large ulcer in my rectum, appx 7cm, that is not healing with the ileostomy. I am very scared of the prospect of losing such an important part of my body and of the side effects that go along with it. I would love to talk to someone that has gone through the same thing, or something similar.
Tuesday, October 11th 2008 - 12:38:43 PM
Your name: Jill
E-mail address:
Country: Canada
Comment or story:  Hi, I'm Jill I am 33 yrs old and have had Crohn's disease since I was in my late teens. "Stomie" and I became friends in April 2008. I went into the hospital on Feb 18 2008 with a blockage and was finally released on May 28th, after multiple surgeries, more needles than I can count and a stoma resite, I am working on accepting my temporary new friend Stomie. I named him without really even noticing I did it but it seems to help me relate to him and be able to accept the new me. I am waiting now to be called for my reversal and am looking for any info on a reversal or just to chat with someone my own age with a similar story.
Tuesday, October 5th 2008 - 12:38:43 PM
Your name: Jerry Birch
E-mail address:
Country: USA
Comment or story: I am a survivor of ulcerative colitis. My colon was removed in 1990. Since then I have had several blockages which required surgery. Twice I was delivered to the hospital my ambulance. I have had 4 blockages since surgery. In September I had a complete stoma reconstruction. That means moving my stoma from my right side to my left. Before that I had 2 large hernias and had them operated on....
There isn't a lot of things that I cannot do. (within reason) I learn to live with God dealt me. Pay attention to your doctor and all things will be fine....
Tuesday, October 1st 2008 - 12:38:43 PM
Your name: Sophia
E-mail address:
Country: USA
Comment or story:  Hi, my mother, who is 83, had an ileostomy 18 months ago. The stoma is almost at skin level. Once we added convexity to the barrier, we were fine for a number of months. Then the bag unexpectedly started leaking unpredictably, lasting from several hours to 2 days. Before, it lasted 4 - 5 days. A skin sensitivity was developing at the same time. We switched from ConvaTec to Nu-Hope. That took care of the skin condition, but the bag still only lasts a few hours to 2 days. Mom has been putting on weight since her recovery, and is now overweight, which I expect is the main problem. We do use a little caulking just by the stoma. We have tried Eakin seal (we used to use that with the ConvaTec, but not now with the Nu-hope as it doesn't help.) Any tips or advice would be appreciated! Thanks.
Tuesday, October 7th 2008 - 12:38:43 PM
Your name: Edward
E-mail address:
Country: Canada
Comment or story:  In 2005 I was rushed to hospital with a leaky colon ...pretty messy,. the large intestine was removed completely....had a blockage 2 times ..must be careful what I eat ,very painful & is bad for about a week ..I'm getting used to the pouch and all that I'm 78 years old and never had a medical record...I'm doing fine now ,still on this side of the grass ..I feel a bit light headed at times ..Hope to hear from some one ....
Tuesday, October 7th 2008 - 12:38:43 PM
Your name: Sandra
E-mail address:
Country: USA
Comment or story: I am 36yrs old and was diagnosed with Crohn's Disease when I was 12. I had my first surgery when I was 13 and that was a resection and my appendix burst prior to surgery because the Crohn's had eaten thru my intestine. I had lots of ups and downs thru the years but managed with medication. I got married when I was 27 and I had my son when I was 29. I did have some minor issues with constipation while being pregnant. I always wanted another child but haven't had any luck because in Jan. of 2001 I wanted and received an Ileostomy. I was told that having another child would not be a problem however I have two cysct near my ovaries. I need some advice from anyone that has had these same problems. I am afraid that I wont be able to have any more children. I am very grateful that I have one son and my health has been great every since my last surgery. I finally do feel normal but just not complete until I have just one more child. Please email me with any advise. Oh, I almost forgot, I did try clomid for only two months and then we moved away...........I am going to go back to a fertility doctor.
Sandy
Tuesday, October 7th 2008 - 12:38:43 PM
Your name: Darryl
E-mail address:
Country: USA
Comment or story: Hello All, I am 46 yrs old m and just had (8 days ago) my 4 month old colostomy reversed. I had diverticulitis resulting in an abscess resulting in about 10 inches of colon removed. Then I had the surgery site eviscerate and then a fistula problem. Yes it is depressing but do not be scared to talk to your doctor and consider an antidepressant - as my dr. said to me 4 operations in 5 months, I wouold be depressed too. My question is now that my initial bowel movements have started they are bloody and burn. Has anyone else experienced this?
Tuesday, October 7th 2008 - 12:38:43 PM
Your name: Michele
E-mail address:
Country: UK
Comment or story: i have had a ileostomy on 12th April 2008 after having Ulcerative Colitis since I was 17, medication failed so no option but to have the op, I talk to my surgeon in July about possible reversal anybody had it done so I know what to expect, I'm a bit frightened
Tuesday, October 7th 2008 - 12:38:43 PM
Your name: Regina Townsend
E-mail address:
Country: Australia
Comment or story: My mother (86yrs old) had an ileostomy procedure due to bowel cancer, I live 400 kms from her and have a partner. I stayed with her for 12-months till she was able to cope on her own. She has district nurses attend her bag which is a godsend. But I must say I nearly tore my hair out and poor Mum was out of sorts quite often as she had leakages a lot. Overtime I realised that her stoma was getting smaller and needed a smaller hole in the wafer. Still with the leakages, after the umpteenth call to the stoma nurse, she suggested an additional smaller wafer and this has been a savior. She is now living a normal life with district nurses calling every 4 days to change her bag. I visit once a month now.
Tuesday, October 7th 2008 - 12:38:43 PM
Your name: Scot Balko
E-mail address:
Country: USA
Comment or story: I am a quadraplegic, who had an ileostomy about 5 years ago. This afternoon, I noticed a infected leakage coming from my genital area...anyone familiar with this? I also had a UTI diagnosed today. My bladder is still intact. Since my ileostomy surgery, I still get many UTI infections. Does coffee affect these? Any suggestions or comments would be appreciated. Is there a medical term for the possible infection from the penis area?
Tuesday, October 7th 2008 - 12:38:43 PM
Your name: Alan
E-mail address:
Country: USA
Comment or story: I've been reading these stories, I've had my ileostomy for 35 years. There's nothing you can't do. Enjoy your new life. meet other ostomy people, make friends, enjoy. I've hiked, canoed climbed mountains, lived, loved, laughed, and cried. There's no guarantees, only opportunities.
Tuesday, October 7th 2008 - 12:38:43 PM
Your name: Kamala Wheeler
E-mail address:
Country: Australia
Comment or story: I have FAP, was diagnosed when I was 13, had Total Collectomy at 16, everything going well until a flair up of polyops, in Nov '07 had J-Pouch & Ileostomy, everything going great, adapting to ostomy really well, just waiting on word for reversal.
Will be travelling back and forth to Newcastle approx 6 hour drive to hospital and seeing 2 spacalist. Would love to hear from anyone.
Tuesday, October 7th 2008 - 12:38:43 PM
Your name: Quartz
E-mail address:
Country: UK
Comment or story: Hi i had a loop ileostomy Feb 07 then that was converted to an end ileostomy January of this year. I have Crohn's (for about 14 years) and use octreotide injections to control output as get severely dehydrated and lose masses of weight without it. Problems for me include putting on and keeping on any weight. Constant aniemia and nutritional malabsorbtion due to speed of transit through gut. On a personal note. I love family life, am learning clarinet and Spanish and Italian and enjoy short European trips. animal lover and young outlook for 43 year old, but isolated with my ileostomy and would love to correspond with others. Please drop me a line from anywhere in the world.
Quartz
Tuesday, October 7th 2008 - 12:38:43 PM
Your name: Megan
E-mail address:
Country: USA
Comment or story: I am 24 years old and have an ileostomy. I recently was hospitalized with a bout of colitis and was responding well to medicine there but suddenly got worse and needed to have emergency surgery. They ended up needing to take out my entire colon but were able to leave the rectum intact. The doctor gave me the go ahead for the reversal surgery around the beginning of July. I'm not really sure what to expect from this surgery so if anyone has had it done and can give me any advice or share their story i'd really appreciate it. With that being said, if there's anyone my age who just got an ileostomy and needs to just talk, i'm also here for that as I wish I had someone to talk to after it happened to me.
Tuesday, October 7th 2008 - 12:38:43 PM
Your name: Robbie Keenan
E-mail address:
Country: England
Comment or story: Hi everyone I had an ileostomy in 1999 because of a genetic bowl cancer that’s started with my dad and uncle and also had a very rear brain tumor as well. It’s called fammila polipopus coli. I’m now 28 and have had a lot of problems with it but for the past 2-3 year its going ok, but I find it very hard to meet new people because of the fear of leaks because I’ve had them in the past plus I don’t know anyone in my age bracket with one, its hard not having anyone not your age or there about to talk to about it. But hay I’m not all depressed about it I still have good time and am living my life to the full. Would to talk to people with Ileostomy’s and see how there getting along. So just email me if you want and keep on living everyone.
Tuesday, October 7th 2008 - 12:38:43 PM
Your name: Estelle
E-mail address:
Country: USA
Comment or story: I would like to update everyone on my husband Steve's reversal of his ileostomy. This was his 6th surgery - 3rd attempt to do a reversal without having a leak so you can imagine how scared he was for this surgery. His surgery was 4/29th and it was a success -- NO LEAK! However, he has been experiencing a lot of lower abdominal pain and constant cramps. His low grade fever and night sweats have now subsided (they lasted for 2 1/2 weeks). He has at least 20 bowel movements a day (diarrhea) and his butt is getting really sore (burning). Is there any relief for him? How long should he expect this to continue? He would like to get back to work full-time in July. He has been out of work since 9/14/2007. He has lost a lot of weight and muscle. He is still scared that a leak could take place even though his Dr. said, "You are not leaking and you are not going to leak." Any comments/advice would be greatly appreciated.
My husband has Diverticulitis - not colitis or Crohn's. This has been a nightmare for him - he went in having elective surgery to a have a resection of his colon because of the repeated infections due to his Diverticulitis and ended up with 6 surgeries and two ileostomies within 7 months. I would be more than happy to share our experiences and give any advice on what we both went through together.
Tuesday, October 7th 2008 - 12:38:43 PM
Your name: Christine
E-mail address:
Country: USA
Comment or story: i have an ileostomy since 93 I am 36 yrs of age still have good and bad days my body hurts just about everyday need a friend I'm here.
Tuesday, October 7th 2008 - 12:38:43 PM
Your name: Joanne
E-mail address:
Country: USA
Comment or story: I am a 62yr old lady who had a ileostomy created in November 2007. I had suffered with colitis for over 10 years and finally decided to go ahead with the surgery when meds were no longer working for me. Today I am more active then I've been in years. I am however still learning on what foods I can eat and what to stay away from.
Tuesday, May 20th 2008 - 12:38:43 PM
Your name: Tracy D.
E-mail address:
Country: England
Comment or story:     Hi my name is Tracy I had a emergency operation for a blockage and now i have a ileostomy i have had my bag on a few months and up till now doing ok .would like to e-mail people with same situation and around the same age. I am 32 look forward to hearing from you.
Tuesday, May 20th 2008 - 12:38:43 PM
Your name: Patricia
E-mail address:
Country: USA
Comment or story:     Hello I have a Ileostomy, my stoma (Peaky) has become more recessed because my weight gain of 20lbs or it has just drawn inward. I use a convex wafer with a home made insert (oval) and a Adapt barrier ring on top of that. My goal is to make a spout because there is no stoma for the products to adhere to as in the colostomy. I have a hard time putting in on the same way every time. I get three days if I am lucky because of the erosion to the appliance. I have not found and distributer that tries to deal with the issues of a Ileostomate. I feel that the patient should have liposuction around the stoma if need be to make a uniform even surface for the appliance to adhere too. I have to limit the movement of my midriff so that my appliance does not loosen and leak I hope that I have helped someone.
Friday, May 9th 2008 - 12:38:43 PM
Your name: Andrea
E-mail address:
Country: Boston, Massachusetts
Comment or story:     My name is Andrea, I am 45yrs old. I had UC from the age of 16yrs old until I was 37yrs old and made the choice that enough was enough. I have an ileostomy and will never be able to have it reversed. They had to take everything. I do not have leakage, skin problems or anything. I use that special powder they offer on my skin under my flange and it works great. I can eat anything I want as long as I chew well and drink. I live a fairly comfortable life.  The only part I don't like is the noise, but I deal with it. After being sick for so long you truly start to live after surgery. I am single, so when I have to explain this to someone, it does get uncomfortable. My best friend told me once, if your at that point in your relationship that you feel your ready to discuss, and that person is not understanding or supportive then you don't belong with them anyway. It is very interesting to me reading everyone's experiences.
Friday, May 9th 2008 - 12:38:43 PM
Your name: Jane
E-mail address:
Country: England
Comment or story:     Hi everyone. Haven't been on here before bit would love to hear from anyone who cares to e-mail me. I had an emergency colectomy and ileostomy in March 2007. Have more or less got used to it now. Very happy about being able to do some things I couldn't before. My problem is with bending down - I like to garden but find it very difficult to crouch or bend over because of my pouch. I can't kneel as I have 2 knee replacements! Anyone any ideas to help?? Look forward to hearing from you.
Wednesday, April 30th 2008 - 12:38:43 PM
Your name: Lizzie Moyo
E-mail address:
Country: Zimbabwe
Comment or story:     Hi everyone I am 22 years old .My ileostomy is turning 2 on the 14th of June. I live in Zimbabwe and I am an A level student.  I am black, tall, I love music ,food, and my stoma. I live with my parents and 4 sisters and 1 brother My only problem is how to tell a guy that I have a bag hanging on my tummy.
Sunday, April 27th 2008 - 12:38:43 PM
Your name: Delia H.
E-mail address:
Country: USA
Comment or story:      Due to a colitis infection, had 90% of my large intestine removed in October of 2007.  Had a stoma for a period of four months.  A couple of weeks ago was fortune enough to have my reversal.  Now trying to adapt to new challenges in my body system.  Does anyone have suggestions as to what kind of diet will work better? Currently having too many bowel movements.  Will this eventually get better with time?  Would appreciate any information.
Monday, March 17th 2008 - 12:38:43 PM
Your name: Kelly
E-mail address:
Country: Canada
Comment or story:      For  almost 2 year I had have a ileostomy for 10 year I was very sick and then they did the surgery for me it was a long road for me but I am doing better now I am looking for friend or to talk to people that have the same thing I am 33 I just got back to work well I hope to here from you.
Monday, March 17th 2008 - 12:38:43 PM
Your name: Val
E-mail address:
Country: Australia
Comment or story:      I have had an ileostomy since 2001 due to colon cancer. I am 74 year of age and would like to make contact with others in my age group vie to sharing experiences and solutions.
Saturday, March 15th 2008 - 12:38:43 PM
Your name: Michele
E-mail address:
Country: USA
Comment or story:      Hi!  I am 58 years old, female and just had my reversal ileostomy surgery done this past January. I am doing okay, still having bowel movement a lot, sometimes on the spur of the moment, at which time, I stay close to home. I was diagnosed with rectal/colon cancer last January of 2007. The tumor was in the rectum and in 2 of the lymph nodes. The surgeon removed the tumor and the rectum. I was on a low fiber diet for over 8 months and now trying to graduate into more fiber to my diet. I am still having some things I eat go right through me, plus my bottom gets very sore at going several times a day. Any body got any recommendations as to what to do for diet?
Monday, March 10th 2008 - 12:38:43 PM
Your name: Jacqueline
E-mail address:
Country: England
Comment or story:      Hi everyone have had my ileostomy for a year now have terrible trouble with leaks and sore skin would love some new tips,  Thanks Jackie
Monday, March 10th 2008 - 12:38:43 PM
Your name: Ed
E-mail address:
Country: USA
Comment or story:      I was diagnosed with Crohn's in 1969 -- this was when "medical science" still considered it mostly psychosomatic.  I experienced normal Crohn's stuff for 20 years -- I had all the charming side-effects that Crohn's has to offer.  In 1990, I had my first bowel resection followed by another and another every 2 years.  In 1996, with only 4' of small intestine left, I got my ileostomy and have been going strong ever since.  There have been ups and downs, good days and bad -- but on balance my life has been much better since "Elly" came to live with me.  I'll be glad to answer any e-mails I receive.
Monday, March 10th 2008 - 12:38:43 PM
Your name: Ed C.
E-mail address:
Country: USA
Comment or story:      I am about to join the ranks. March 31 is my date with the surgeon. I have had U.C. for 27+ years and my G.I. highly recommends the ileostomy, (preventive to cancer), last colonoscopy showed "a little forest of pseudo polyps?". I am getting nervous and the thought of it all scares me... what should I expect?
Saturday, March 8th 2008 - 12:38:43 PM
Your name: Mari D.
E-mail address:
Country: USA
Comment or story:      I am amazed at how similar all our stories are. After 30 years' of Crohn's and over 50 surgeries, I got my LAST ileostomy last week, Feb 19.This is the one I will be living with for the rest of my life. I got home today and surrounded myself in bed with my dogs and most wonderful husband. Everything is still hurting and this ostomy is so active. I would be interested in hearing from you kids in your 40-50's and tell me how you got your life back to "normal".
Wednesday, March 5th 2008 - 12:38:43 PM
Your name: Allen S.
E-mail address:
Country: USA
Comment or story:      My 3rd year with an ileostomy. Now I'm getting nausea. MD has scoped me down the front and did a flourscope of my small intestine. All OK BUT i still get the nausea. I heard something about adhesions. Could that do it?  My MD is looking at other things also. Any help out there?
Wednesday, March 5th 2008 - 12:38:43 PM
Your name: Florence S.
E-mail address:
Country: Nova Scotia, Canada
Comment or story:      Have been on here before as both my Husband & I have Ostomies.  He has a colostomy and I an Ileostomy. To Prevent Blockages he takes LACTULOSE this keeps the bowel clear. I just got out of the Hospital with a blockage and one person tells me I can take the same and others say it's not for an Ileostomy. Would love to hear if anyone has used this or maybe something else. We enjoy this Newsletter, there are so many good tips Thanks for everything Florence & Doug
Thursday, February 28th 2008 - 12:38:43 PM
Your name: Donna
E-mail address:
Country: USA
Comment or story:      I just wanted to get the word out that ostomies do not alter what you can do. After having 2 partial colectomies I now have an ileostomy that I have had for 3 years. Each year I have had a revision and the last time it was moved to the other side. I also have a bladder stimulator. I just completed a half marathon and placed 4th in my age group. I work full time and have done lots of traveling. Life has lots to offer, Lets Enjoy!
Thursday, February 28th 2008 - 12:38:43 PM
Your name: Joann W.
E-mail address:
Country: USA
Comment or story:      I have had the bag since Nov 07. I'm at lost to what are the best bags to buy. I have a lot of problem from leakage. I can't go any place almost with out having a problem. Now I'm suffering from a bad burn from using soap I've had it for 3 or four days. Finally got whole of the nurse where I had the surgery. She called in a steroid spray for me to use however the pharmacy had to order it. Has any one else had this problem.
Thursday, February 28th 2008 - 12:38:43 PM
Your name: Vickie T
E-mail address:
Country: USA
Comment or story:      I had my ileostomy done in Dec. 2007 after 30 years of ulcerative colitis and diagnosed with Crohn's during surgery. Instead of losing half a colon, took all except 2" and rectum.  Anyhow, not accepting this gracefully and this web-site is absolutely a God-send.  But now I have a question...my stoma seems to be protruding a little more (about another 1/4") the last few weeks.  Doctor says not to worry but am looking for possible reasons...lifting the grandbabies, diet, or ???  Thank you to everyone for sharing stories, hints and support.  I will survive!!
Tuesday, February 26th 2008 - 12:38:43 PM
Your name: Wendy B.
E-mail address:
Country: USA
Comment or story:      Can someone please give me some suggestions for explaining an ileostomy to a boyfriend I have been dating  three months. Thank you for your help.
Monday, February 18th 2008 - 12:38:43 PM
Your name: Patti
E-mail address:
Country: Massachusetts-USA
Comment or story:       My husband had a complete large intestine removal in late Nov.2007 and now has a bag.  He is contemplating a reversal operation soon and has many questions.  How long is the recovery - how often do you have to go to the bathroom after - will his life revolve around worrying about where's the bathroom, etc.  His surgeon told him he would probably be going around 15-20 times a day.  Is this right?  Any answers would be greatly appreciated.
Sunday, February 17th 2008 - 12:38:43 PM
Your name: Cheryl
E-mail address:
Country: North Carolina, USA
Comment or story:      Hi, I just found out about this site. I've had my ileostomy for 23 years due to FAP. I was 27. I have been through about anything and everything with it. I love to talk to other ostomates, and share advice and tips.
Thursday, February 14th 2008 - 12:38:43 PM
Your name: Estelle
E-mail address:
Country: USA
Comment or story:  I posted a story on behalf of my husband Stephen today and apparently not all of it was posted because it was too lengthy. What I would like is to hear from people who had a reversal done. He has an ileostomy now on the left side. His first reversal was unsuccessful due to complications (red blood count down, two blood transfusions, hematoma formed, high white blood count, new leak at surgery site, etc). What can we expect - pros/cons. He is scheduled to see a color/rectal specialist for a 2nd opinion. Your comments would be greatly appreciated. THANK YOU!
Saturday, February 9th 2008 - 12:38:43 PM
Your name: Kelly
E-mail address:
Country: Perth, Scotland
Comment or story:      I am 28 years old and have had my ileostomy for 4 years and it has changed my life for the better.  I have a condition called FAP which is a genetic condition that runs in families.  I was the first person with the condition in my family, but unfortunately my son, who is 12 has just been diagnosed with this condition also.  He will be required to have his colon removed due to polyps growing there, and if this operation is not performed then people with FAP will have bowel cancer by the time they are 50 years old. My son is now coping well with the fact he requires this operation as he is aware that having a stoma does not mean that you have to stop doing things you love. I have also developed desmoid tumors which are also part of the condition and I had 1 removed 2 years ago but more have grown back, and due to pain these can cause I am due to get chemotherapy to shrink these within the next few months.  These tumors are benign but will grow and press on other organs. I got married in 2006 to my wonderful husband Neil and I am happier than ever with him and our son.  I don't let the fact that I have stoma prevent me from doing anything, in fact it gave me a new lease of life. FAP is quite rare and the medical team don't know a lot about the symptoms and what to do about my tumors and at present it is trial and error with what treatment works.It is lovely to read everyone's stories and how we all cope when things get tough. Please feel free to give me an email.
Saturday, February 9th 2008 - 12:38:43 PM
Your name: Sophie
E-mail address:
Country: USA
Comment or story:      I  had an ileostomy in 1969 at the age of 23. I have had very few problems and had a baby in 1971 by c section and another baby in 1989 with another c section.  Lately, I have had joint issues and now they are talking about a hysterectomy but surgeons are concerned about all the scar tissue and could be a long surgery and long recovery.  Has anyone else dealt with surgery after their ileostomy.  I am getting ready to retire and love the read all your stories and it is wonderful to know that we all have the same experiences.  Would love to find a cure and a cause!  Would love to hear from any of you.
Thursday, February 7th 2008 - 12:38:43 PM
Your name: Donna
E-mail address:
Country: Scotland
Comment or story:      I had UC when I was 19 and by the time I was 21 I had an ileostomy, even getting to sit on my horse was a chore. I had this operation done and it gave me a new lease of life - one of the best things I ever did. This was 5 years ago and it has never caused me a problem or interfered with daily life, including camping and motorbiking. I even met my partner with having this. Now the next stage of the op is due, the reversal I am having this done next week, I am not particularly worried and feel life will probably be strange without my friend the bag. I could live with it, but reckon I should give the reversal ago. I will know by this time next week, but really I looking for a penpal who has had or has a similar experience. I will happily reply to anyone, and cant say enough what a positive step having a bag can be, never bothered me in the slightest.
Wednesday, February 6th 2008 - 12:38:43 PM
Your name: Michael Crawford
E-mail address:
Country: USA
Comment or story:      Good day! I had my entire large intestines removed in May of 2004 due to a hereditary disease called FAP. FAP is an inherited colorectal cancer syndrome and accounts for 1 percent of all cases of colorectal cancer. The "F" stands for familial, meaning it runs in families; "A" stands for adenomatous, the type of polyps detected in the colon and small intestine that can turn into cancer; and "P" stands for polyposis, or the condition of having lots of colon polyps. The gene for FAP is on the long arm of chromosome 5 and is called the APC gene.

Patients with FAP develop hundreds to thousands of colon polyps, usually starting in the teens. All patients will develop colorectal cancer from the colon polyps usually by age 40. Patients with FAP must have the colon, and sometimes the rectum, removed to prevent colon cancer.

After loosing my father at age 51, a brother a 31 and a sister at 43, I decided to have my removed before it turned into cancer. I was 34.

It is been over 3.5 years since my surgery and I am 100% back to normal. Although sometimes I struggle with getting cramps/blockages and my skin getting a little irritated at times, I'm OK.

I would love to share my experience because looking back I had no one to share information until after the surgery.

Friday, February 1st 2008 - 12:38:43 PM
Your name: Gillian L.
E-mail address:
Country: England
Comment or story:      Hi everyone. Haven't been on here before and have been reading some of the letters. So I thought I'd post one and see if anyone would like to mail me. I've had Crohn's since 93 and had an ileostomy June 06 with the rectum removed. I thank the day I had the op. Life is now pain free and happy again. I'm 53 single with 2 grown up children. Anyone wishing to mail please do.
Friday, February 1st 2008 - 12:38:43 PM
Your name: Debbie
E-mail address:
Country: USA
Comment or story:      Hi I am a 52 yr old woman who has had Crohn's since probably it was named. In 2001 I ended up with a ileostomy. Which is fine once I learned i am still a woman after u get one. What my question is no matter how much i drink i am a dehydrate with many kidney stones. We have been thru all the diets veggie which ended up with acidosis of the blood on that one. but any diet i did didn't stop the stones...i was told lose weight. well i wasn't over weight to start but lost and work out all the time. nothing has stopped even went the route of drinking this horrid meds. Last week after 3 weeks of stents went in and had one kidney cleaned out. What I don't understand is i very seldom if ever read about anyone else having tons of stones due to the ileostomy dehydrating them. Any one else have this problem?
Friday, February 1st 2008 - 12:38:43 PM
Your name: Kendra
E-mail address:
Country: Kentucky, USA
Comment or story:      Hello, My name is Kendra and I am a 28 year old female who suffers from Crohn's disease. I was diagnosed when I was 12 years old and I have had 4 surgeries for it including removal of my colon, rectum, and 6 inches of my small intestine. I have had an ileostomy for 6 years and I couldn't imagine life without it. I am currently disease free and have been living life to the fullest. I have had some reproductive issues. I had an ovarian cyst the size of a volleyball that had to be removed 3 years ago. I continue to stay positive and upbeat about my condition. If anyone wants to talk to me, feel free to shoot me an email.
Friday, February 1st 2008 - 12:38:43 PM
Your name: Jodi
E-mail address:
Country: USA
Comment or story:      They found my gallstones in Dec and I am scheduled for surgery Fri.  I have Crohn's and had my ileostomy 26 yrs ago.  I have not had a flare up since my surgery.  I had 2 end to end anastomosis before my ileostomy.  I had a lot of blockages and dehydration after my ileostomy.  I have had a lot of leakages but nothing serious until 16 years ago..  I had a meningioma (brain tumor) removed then.  Was this related to the Crohn's?  I do not know.  Different people say different things.  I believe so. My question is will gallstone surgery will cause a flare-up?  Or will it cause any problem with my ileostomy?
Wednesday, January 30th 2008 - 12:38:43 PM
Your name: Olga
E-mail address:
Country: South Africa
Comment or story: I am 32 years old of age and live in Johannesburg
I would like to meet friends fro all over the world
I am from South Africa Johannesburg.

I like music, dancing, swimming, all kinds of sport, sex, reading anything, movies, going to church, camping's, nature channels, playing with my kids, clubbing, going out once in a while, browsing the net and most all, taking care of my loved ones.

I am a receptionist/Switchboard at a company called Fine Healthcare and before that I was a pre-nurse in a private hospital Carstenhof Clinic, worked in surgical ward and loved every moment I have spend there.

I was married but separated, looking for a new relationship at the moment My name is Olga Selematsela
, I am loving, caring, understanding, thoughtful and enjoy life at the moment, happy to be your pal`

I thank that is all about me! What about you, please tell me a little more about yourself....!
Monday, January 29th 2008 - 12:38:43 PM
Your name: Gayle S.
E-mail address:
Country: USA
Comment or story:      I may need an Ileostomy. I've been told I do for over a year now but I am terrified. I also have Multiple Sclerosis. I have a question which I hope you won't find silly. Would any of you give me a "guesstimate" of what your monthly Ileostomy supplies cost? I am on 13 medications for my M.S., Depression, R.L.S., etc. It's mind boggling. I realize I must place my health above the almighty dollar but you can't get blood from a stone, you know? Thank you for reading this & I do appreciate any & all replies.  :)
Monday, January 29th 2008 - 12:38:43 PM
Your name: Shirley M.
E-mail address:
Country: USA
Comment or story:      My sister Mary has an Ileostomy. She is 76 years old and just lost her husband of 38 years. She can not wear a bag, they have tried since her surgery in 2003. She is in pain everyday, her skin is being eating up by the feces that comes out. It pours most of the day and night, so she doesn't leave the house very often. I am posting this because she doesn't have a computer and lives in another state from me.  Is there anyone out there that goes through the same problem, and if so , do you have any ideas how she can live life with a little more quality? Any suggestions would be gratefully appreciated!.
Wednesday, January 24th 2008 - 12:38:43 PM
Your name: Audrey
E-mail address:
Country: England
Comment or story: My name is Audrey, I am 58 and just 2 weeks out of ileostomy surgery after a very short period of UC (just 9 months).

I am not dealing with the prospect of having a bag very well which I guess will be everyone's experience and pobviously at this stage get depressed about it all and feel really bad for my husband, although it doesn't seem to make a difference to him, he still loves and cares for  and has accepted everything that goes with the bag. Having read all these stories I feel lucky really and especially feel for those amongst you who are young and single.

MY QUESTION: I am now considering the prospect of a reversal, I have 50cm (2") of rectum left and all my bowel removed. Can all of you who have had a reversal share  your experiences with me regarding the reversal before during and after, my surgeons talk in a Martian dialect and even when they use English, they give evasive and vague answers to every question I have.

    I need to make a real and informed decision about the reversal, I don't want to go into surgery and be left with ongoing surgery thereafter...I will, just as many of you have, learn to live with the bag if I have to but would of course like to consider the options and have reversal if its worth it..I dont want to have it if I am going to live on 'The Throne' for the rest of my life and have the Best Toilet guide fitted to my Sat Nav.
Wednesday, January 24th 2008 - 12:38:43 PM
Your name: Doug
E-mail address:
Country: USA
Comment or story:

     Hey folks, I'm Doug, 45 years old and {ileo}ostomate for 20 years due to Crohn's disease. Most of the 20 years has been uneventful, relatively speaking, but recently started having abscess issues, which is being blamed on Crohn's. I've been following this "news letter" site for quite awhile now, and thought I'd leave my mark here and say thanks for all the info and a place to not feel alone....if you feel like dropping an e-mail, I  can promise I'll reply, I just hope that person is too particular about spelling and grammar, cause I'm not very good at either of those things...lol...I had to proof read this post a couple of times to make sure it was at least readable...lol
Sunday, January 21st 2008 - 12:38:43 PM
Your name: Carol
E-mail address:
Country: USA
Comment or story:

     Hello everyone--what a Godsend this site is.  I'm 37 and have had an ileostomy for just less than a year now.  Mine is supposed to be temporary, but I do have a "mild" case of UC which I'm afraid will flare up later in life, possibly causing me to receive the full time experience!  I've had few problems other than some irritated skin and leakages, but psychologically I've had a hard time with it.  I'm turning over the possibility of having a J pouch done to head off any future problems with the UC and welcome any kind of advice!  I'd like to talk to others with better attitudes towards their stomas--I really need to mellow out about it!  P.S., I've had UC for about 14 yrs.  Any correspondence is appreciated!
Sunday, January 21st 2008 - 12:38:43 PM
Your name: Pepper
E-mail address:
Country: USA
Comment or story:

     Just found this website and have already responded to two of the letters. 

I am 61 years old and have had my ileostomy since May 2003.  I had dysplasia in the colon, discovered at my colonoscopy, and having had a rectal tumor removed 2 years before, there was no alternative but the ileostomy.

I found it very difficult to get used to the stoma and the bag and because I have a liver tranplant, the rejection drugs gave me a sluggish small intestine, so my recovery was long and drawn-out.  But the alternative was not an option so I just had to cope. 

Since surgery, I have been healthy and have worked through some leakage issues (still have them occasionally) and found the right bag for me.  "Lola" and I are getting along pretty well now and I would be glad to answer any questions or assist in any way I can to other ostomates. 

I work full-time and have 2 wonderful children and a dear husband who has taken good care of me and my medical situations.  I also have two darling grandchildren who I would not have been here to see without the ileostomy.  My message to all with ostomies.  Live life to the fullest.  Every day is a gift!  Enjoy life and remember to thank God every day for it.  Thanks to all of you for your letters and information.  The more I read, the more I learn.  God Bless each of you.  -pepper-
Sunday, January 21st 2008 - 12:38:43 PM
Your name: Audrey
E-mail address:
Country: Essex, England
Comment or story:

 Hi all.

My name is Audrey, I am 58 and just 2 weeks out of ileostomy surgery after a very short period of UC (just 9 months).

I am not delaying with the prospect of having a bag very well which I guess will be everyone's experience and obviously at this stage get depressed about it all and feel really bad for my husband, although it doesn't seem to make a difference to him, he still loves and cares for and has accepted everything that goes with the bag. Having read all these stories I feel lucky really and especially feel for those amongst you who are young and single.

MY QUESTION: I am now considering the prospect of a reversal, I have 50cm (2") of rectum left and all my bowel removed. Can all of you who have had a reversal share your experiences with me regarding the reversal before during and after, my surgeons talk in a Martian dialect and even when they use English, they give evasive and vague answers to every question I have.

I need to make a real and informed decision about the reversal, I don't want to go into surgery and be left with ongoing surgery thereafter...I will, just as many of you have, learn to live with the bag if I have to but would of course like to consider the options and have reversal if its worth it..I dont want to have it if I am going to live on 'The Throne' for the rest of my life and have the Best Toilet guide fitted to my Sat Nav.
Tuesday, January 15th 2008 - 12:38:43 PM
Your name: Carlene
E-mail address:
Country: USA
Comment or story:

I'm 45 yrs. old & have had Crohn's for 23 yrs.. so my whole life since I was an adult has revolved around Crohn's...I've been through it all, there's been times the Doctors. themselves have wondered how I made it....I've had a stoma since Nov. 2006 & wonder why I/they waited so long to do the surgery...I feel like I have a life now...wouldn't change it, I'm a Bag Lady...
Tuesday, January 15th 2008 - 12:38:43 PM
Your name: Shirley M.
E-mail address:
Country: USA
Comment or story:

     My sister Mary has an ileostomy. She is 76 years old and just lost her husband of 38 years. She can not wear a bag, they have tried since her surgery in 2003. She is in pain everyday, her skin is being eating up by the feces that comes out. It pours most of the day and night, so she doesn't leave the house very often. I am posting this because she doesn't have a computer and lives in another state from me.  Is there anyone out there that goes through the same problem, and if so , do you have any ideas how she can live life with a little more quality? Any suggestions would be gratefully appreciated!
Tuesday, January 15th 2008 - 12:38:43 PM
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