Colostomy Pen Pals

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Colostomy Pen Pals

Post your Colostomy Story

Your name: Henry

E-mail address:

Country: Canada

Comment or story: Hello everyone thank GOD for this forum. I have had a colostomy for 15 years. Everything was fine till last year, my problem is that I have an area on my skin, under my colostomy where no adhesive known to man will bond to my skin. We thought it was an allergy, it wasn't. We thought it was an allergy to appliances and/or adhesives, it wasn't. Then overnight it went away and by the next day it came back.I am thinking now I must be having a reaction because of something I am eating. For two years I have been taking B-100's because of unexplained tiredness, calcium magnesium, vitamin E, lecithin, Centrum select for people over 50, I am 56. I need your help, Questions, comments greatly appreciated. Best regards, Henry
Monday, May 5th 2008 - 12:38:43 PM

Your name: Darcey

E-mail address:

Country: Canada

Comment or story: My name is Darcey Miner I live in Nanaimo, British Columbia ,Canada. I was diagnosed with Crohn's disease at age 12 and fought with it till age 27 (1991) at that point I spent one year in hospital and a had several bowel resection finally ending up with a Colostomy I made one failed attempt at
being re-hooked I have learned to live (not always easy) with it and realize that it saved my life this is just a vague outline of my experience
Saturday, May 3rd 2008 - 12:38:43 PM

Your name: Brian

E-mail address:

Country: USA

Comment or story: I was diagnosed with Crohn's at the age of 14 and I am now 36. I have been through 2 temp colostomies along with there reversals and now I am living with a permanent colostomy. I have been through the denial, the never wanting to leave the house because I thought of myself as a freak. I was a 2 sport athlete in high school with Baseball and Football and went on to play baseball after high school. Once I accepted my disease and what I had to do to live healthy my life changed. I would love to share my stories and thoughts with anyone who is going through any of this for the first time, or have been going through this for as long as I have. I am still very active, and still play baseball. I know allot of tricks to cover up the bag, and I know some good equipment to use as well in diff weather. I hope to hear from anyone and I would love to have a pen pal to talk to about the same things we might be going through. Good luck to everyone
Friday, May 2nd 2008 - 12:38:43 PM

Your name: Matt

E-mail address:

Country: USA

Comment or story: To all that are facing a reversal, I can answer some of the questions you may have.
I had one 5 months after a portion of my colon was removed. I was concerned just like everyone else is.
I have never been one to drink a lot of fluids. I have always ate my meals and sipped on a drink. I now make water part of my intake when I eat. It helps to keep the colon flushed with water. I avoid Corn, Nuts and prepared foods such as served at fast food establishments. If you eat fast foods, your health will suffer. It is simply not good food for you, it just tastes good. After your surgery, eat soft foods like non breaded fish, chicken soup and such for at least a month. My doctor said eat anything you want and 3 days later I was back in the hospital because the reconnection blew out a portion of it. EAT SOFT FOODS! I also want to recommend that you take 1000 grams of B-12 every day for a year. It helps your body heal inside and that is what my personal doctor said. You will feel funny after the operation and several months after. You may feel movement within before your bowl movement. That is normal.
Just hang in there and message me if you have any questions.
Thursday, May 1st 2008 - 12:38:43 PM

Your name: Sandy

E-mail address:

Country: USA

Comment or story: April 2, 2008 had emergency surgery due to diverticulitis. Woke up with partial colon removal and temporary colostomy. Like everyone, it has been an emotional roller coaster. I have been trying to research which brand/style product is the most reliable (i.e. preventing leakage etc). It's all so confusing. Would love to have people I could talk to about this.
Monday, April 28th 2008 - 12:38:43 PM

Your name: Lucy

E-mail address:

Country: Ireland

Comment or story: Hi, I am 21 and had my colostomy done just before Christmas. This was due to a blocked bowel caused by another operation that I had 4 weeks previously. Initially I was very depressed but it's amazing how one can adjust! I am due to have a reversal in 5 weeks and was just wondering if there is anyone who has gone through it, that could maybe answer some questions? I am extremely nervous about getting this done and don't really have anyone else to talk to!
Thursday, April 17th 2008 - 12:38:43 PM

Your name: Suzanne R.

E-mail address:

Country: USA

Comment or story: This is the first time I have contacted anyone about my surgery. My colon burst in 2005, and I was told that I should have died....I know now that God had other plans for my life...and I am so thankful that I am alive and well now. I will have to wear this bag for the rest of my life though... I have a question that I hope can be answered by someone who has had this problem, or knows of someone....I have developed a sore right next to my stoma...it is not healing because my bag covers it, and it can't get any air to heal. I have had this sore for about 2 months, and it keeps oozing. Does anyone have any suggestions on how I can get this sore to heal? I am thanking you all for providing a forum for people like me to come, and share.
Thursday, April 17th 2008 - 12:38:43 PM

Your name: Dave L.

E-mail address:

Country: Minnesota, USA

Comment or story:      I am 42 and on dec.28, 2007 my life changed. In the morning I had some gas pains, later on the pain had gotten worse. I went in to get checked out. An MRI later I was sent to get an emergency colostomy. Two hours later I had a bag and a long scar. I was lucky, I was going to go home and just sleep it off. I was told that if I did I might of not seen daylight. I had diverticulitis with a little paratonitis added in. I have a pencil in date of July 1st 2008 to get hooked back up. I have problems keep in my wafer to stick, and the smell of dumping my bag, I can clean out my shop when I do. my co-workers tease me but it is in good humor. what other choice do i have, make the best of it. like the saying goes, If you don't have the problem you just wouldn't understand. I hope my reversal goes good. I wasn't the least worried about it until i read some other comments. but I guess I would go threw it than be with the bag the rest of my life. I am a local truck driver with a few over nights,
My life has changed a lot but I am still above ground.
Monday, March 24th 2008 - 12:38:43 PM

Your name: Raja Ram Parajuli

E-mail address:

Country: Nepal

Comment or story:      I am from Nepal. My newborn baby have done Colostomy. Now he is in Five Months. Now we have a problem, in our country, here is not available "infant size colostomy bag". I am trying but not success. So I would like to request to all for "infant size colostomy Bag" Thank you.
Sunday, March 23rd 2008 - 12:38:43 PM

Your name: Mark M.

E-mail address:

Country: USA

Comment or story:      I became sick with what I thought was a terrible stomach virus but it would not go away so a CT SCAN sent me to the hospital for perforated colon due to Diverticulitis. I have what should be a temporary colostomy. My surgery was Nov 16 07 and I'm due to see my surgeon again on the 27th of Mar 08. I have good days and not so good days and if you want to share your story with me I would appreciate it. I have to watch what I eat "or else" and energy level some days for what seems like no reason is down. Not sure if it is because of the illness or a symptom of feeling mentally down about my situation.
Friday, March 21st 2008 - 12:38:43 PM

Your name: Kathleen

E-mail address:

Country: Boston, USA

Comment or story:      I had surgery in June, 2007 for recurrence of Ovarian Cancer and ended up with an infected and perforated colon. Another surgery in July to remove part of the colon and a temporary colostomy. Then the doctor decided that the temporary should be permanent but has now agreed to a reversal as long as I understand the risks - mostly infection. As much as I don't want to live like this forever I am a afraid of what could happen. Any help will be appreciated. I am seeing the GI surgeon in early April. Thanks
Friday, March 21st 2008 - 12:38:43 PM

Your name: Linda

E-mail address:

Country: USA

Comment or story:      I've been reversed for about 7 months now. I could count the number of regular bowel movements I've had on my fingers. They are usually very little and smushy :( and I go several times a day most of the time. Sorry for the details...I have gas that is extremely smelly. It happens every day especially at night. I try to watch what I eat and it seems to make no difference. I try gas x and beano everyday, but its like taking nothing. I'm going to see my surgeon on Tuesday to see if he can figure out what may be going on. He suggested there may be a stenosis? Has anyone else that has been reversed had any problems? Please feel free to email me.
Friday, March 21st 2008 - 12:38:43 PM

Your name: Mary M.

E-mail address:

Country: USA

Comment or story:      i just had a colostomy a few weeks ago and i would like to talk to someone who has had the same surgery . i feel like no one understands how i feel and i don't know who to talk to. can anyone suggest a support group of some sort?
Saturday, March 15th 2008 - 12:38:43 PM

Your name: Tony B

E-mail address:

Country: USA

Comment or story:      I am a 35 year old mother of three. In August '07 I had emergency surgery due to a perforated intestine caused by diverticulitis. It was a huge life changing experience. I went through bouts with depression, problems with my bag, skin issues, etc. You name it, I was dealing with it. I did some research once I was feeling better and discovered that a female issue I has dealing with could have contributed to my problem. I consulted a OB/GYN. They confirmed the problem was indeed contributing to the intestinal issues. I had my reversal surgery and a partial hysterectomy three weeks ago. I am doing well and shouldn't complain but I am having a ton of discomfort and pressure in my intestines. Is there anyone who has had a reversal that can help me with my questions? I guess I am just really scared that something could be wrong and I don't want to go through anymore surgery if I don't have to.
Wednesday, March 12th 2008 - 12:38:43 PM

Your name: Katie

E-mail address:

Country: USA

Comment or story:      My daughter, Natalie, was born on October 19th, 2007, with no anus. She was taken to Vanderbilt Children's Hospital only a few hors after birth. Two days later, she had a colostomy. They are going to be able to fix it when she's about 18 months old. She has a few other minor problems, nothing life threatening, that require surgery to. All together there will be about 3 surgeries for her to go through. I'm just looking for someone to talk to that is going through, or has gone through the same thing. She is the only baby born in my town with this problem so it's really hard to talk to anyone about it.
Wednesday, March 12th 2008 - 12:38:43 PM

Your name: Dottie L.

E-mail address:

Country: USA

Comment or story: Hi. My colostomy was done Oct. 23 last year, and I'm still having trouble using the correct equipment. My bags keep getting loose and then I have leakage and have to change everything, including clothing. I am afraid to be away from home for a very long time. Also, I wonder if anyone has information about different brands they use, with good results, so that I can then try them. This is really causing desperation and frustration.
Tuesday, February 26th 2008 - 12:38:43 PM

Your name: Jean M.

E-mail address:

Country: USA

Comment or story:      I have a question that I hope someone can answer. I had a colostomy in Aug 07. Our 40th wedding anniversary is in a few months and my husband wants to go to a resort for a few days to celebrate. My question is, how do you handle the disposal of the ostomy bag when in a hotel? I have a great spray that eliminates the odor when changing the bag so that would not be a problem.
Thrusday, February 21st 2008 - 12:38:43 PM

Your name: Carolyn Blackwell-Stark

E-mail address:

Country: USA

Comment or story:      I had a permanent sigmoid colostomy Jan. 2007 due to a very rare muscosal melanoma on my rectum. I have tried to irrigate twice. Once with the ET nurse and once at home which was a disaster. I suddenly developed cramps, sweating, nausea and vomiting. I am reluctant to irrigate again for fear of a repeat situation. Has anyone ever experienced this?
Wednesday, February 6th 2008 - 12:38:43 PM

Your name: Sharon

E-mail address:

Country: USA

Comment or story:      I've had a colostomy since December, 1996. I've tried several times to irrigate without success. Now, I'm planning to start the Weight Watchers Program and would like to try irrigation again because the diet requires fruits and vegetables which make the ostomy very active. Is there anyone that has a colostomy, that irrigates and is or has been on Weight Watchers?
Monday, February 4th 2008 - 12:38:43 PM

Your name: Patricia

E-mail address:

Country: Barbados

Comment or story:      I am 51 yrs old. About ten years ago I had surgery for endometriosis received a hysterectomy .On November 7th 2007 I was rush to emergency clinic x-rays showed a blockage in my intestines. Went to surgery on the 14th,woke up with a colostomy .Now I am being told that the colostomy cannot be reversed because of the amount of scar tissues found in the colon. I am looking for a GI to have a second opinion. So anyone out there willing to help I would be extremely grateful
Friday, February 1st 2008 - 12:38:43 PM

Your name: Rhonda

E-mail address:

Country: USA

Comment or story:      Hi, Im 41 years old and went through chemo and radiation for cervical cancer in Jan and Feb of 2007. Due to complications from internal radiation I had to have a total exoneration and colostomy and urostomy. I am handleing all of it fine with a few small problems with the red and sore skin around the stoma. If anyone has any ideas on how to deal with this please let me know. Also how do you deal with dating? My friends have been wonderful through all this and they listen, but they just don't understand, I mean they aren't the ones going through this. Would love to talk to someone, Im also a good listener, so email me.
Wednesday, January 30th 2008 - 12:38:43 PM

Your name: Emily

E-mail address:

Country: USA

Comment or story:      My 73-year-old mother had an emergency ileostomy in September of 2007 after a burst appendix and a burst colon. She had all kinds of trouble adjusting to the pouch and had a lot of problems with raw skin. When I saw how raw and bleeding the skin was, it reminded of the bad diaper rashes my kids used to get. So I bought Desitin cream and started putting that on mother's raw skin. It worked like a charm! She was also having trouble staying hydrated, so I read that PediaLyte has 7 times the electrolytes as Gatorade. She started drinking a liter of PediaLyte every day, in addition to Gatorade, which helped tremendously.
She just had her reversal surgery last Friday, 1/26/08. The surgery went very well. It's been 3 days and we're still waiting for her to pass gas. They won't let her drink or eat anything until that occurs and she's getting a little cranky. She has some abdominal pain from the incision, but overall I think it's going well.
Monday, January 28th 2008 - 12:38:43 PM

Your name: Diane

E-mail address:

Country: USA

Comment or story:       Hi All:     I have been a frequent reader and have posted a few    times over the months, but now I am the one who needs a little advice and information.
    I had a colostomy and since then have ended up with diversion colitis and colitis    Recently the stool coming through to the stoma has thicken and hurts as it passes through the stoma. My gastro doctor has suggested I might need to have the  stoma enlarged Has anyone out there had this done.??
    Or could foods from time to time casue this: what we eat.
Friday, January 25th 2008 - 12:38:43 PM

Your name: Bill L.

E-mail address:

Country: USA

Comment or story:      Today was my first using colostomy irrigation and it was a mess. An hour later I am writing this and wondering if it gets better. The discharge, while welcomed, was immense. I have to ask if the amount of discharge will become more predictable and manageable as time passes. I am committed to continued irrigation as a sensible solution to daily living with a permanent colostomy. Any comments or suggestions are greatly appreciated. Thanks, Bill
Friday, January 25th 2008 - 12:38:43 PM

Your name: Patty

E-mail address:

Country: USA

Comment or story:      QUESTION-- Has anyone heard of a mucus ball that develops in the anus even though nothing is suppose to go there if you have a colostomy???? If you have , please help me and share your story with me.. It happened to me and the pain was horrible and I never hear anyone talk about it. Thank you, Patty.
Friday, January 25th 2008 - 12:38:43 PM

Your name: Mary Elizabeth

E-mail address:

Country: USA

Comment or story:      I have more of a question than a comment. Following a spinal cord injury in 1998 which resulted in my becoming a paraplegic, I had a colostomy in 2002. Since then, I have had what started as occasional and is now almost daily, "blow outs" from my rectum. These blow outs are not bowel, but a very foul smelling slimy mucous. Has anyone else had this problem? I would have the bowel blow outs before the surgery, which limited my activities. But not, these blow outs are even more limiting. I am anxious to hear how others have dealt with this.
Wednesday, January 23th 2008 - 12:38:43 PM

Your name: Tina.

E-mail address:

Country: USA

Comment or story:      Hi, I have a left side colostomy. got it in November
I have a lot of pain on left side when i walk, can anyone tell me why?
Tuesday, January 23rd 2008 - 12:38:43 PM

Your name: Jessi R.

E-mail address:

Country: USA

Comment or story:      I too had a hysterectomy due to endometrial cancer, and wound up with a bad infection after the surgery and finally a rupture and after two weeks in a medically induced coma, I wound up with a transverse colostomy. Which has prolapsed, become ulcerated, constantly makes noise and runs non stop, I use Hollister due to trying other products that leaked didnt work for me, and I am supposed to have a reversal soon, and am scared to death, as it is hard to live with this , but dont want to take any chances of winding up in ICU in a coma again, even though they are running tests to make sure my colon is working properly or something, and taking no chances, and trying to do laproscopy thru the stoma with local, you never know when they get in there what they will find, and to take a chance and wind up in ICU, what should I do. I need some support thru this and help. As what is my choice to live with it or take a chance again. Jessie

Friday, January 19th 2008 - 12:38:43 PM

Your name: Sharon

E-mail address:

Country: USA

Comment or story:      Hello everyone,
I have been going through this battle since March 2005. Chemo/Radiation/surgery. I have a colostomy now. I am supposed to have it reversed the end of January. I am scared as I have had it revered before and it failed.
I had a fistula break through in the anal and vaginal wall. I was very sick when that happened and need to have the colostomy put back.
They did a repair and that failed. The next step was to use my own muscle from my leg and use that for the repair. It worked! Now I am ready to face another reversal.
I have faced cancer and won. It has given me a new outlook on life. Would welcome your comments and chatting with my fellow piers that have gone through this. We all know how each other feels.
Looking forward to chatting.....Sharon
Friday, January 19th 2008 - 12:38:43 PM

Your name: Sonja

E-mail address:

Country: USA

Comment or story: I have a Colostomy since 1994. I also have had a Urostomy since 1967. I am 53 years old and I would love to have some Pen pals to write to and/or talk to.
Sunday, January 13th 2008 - 12:38:43 PM

Your name: Brenda

E-mail address:

Country: USA

Comment or story:      On Nov 1st, 2007, I went into the hospital to have a sigmoid colectomy, colo-vaginal fistula removal, abdominal wall hernia repair and the removal of my remaining right ovary and falopian tube. The surgery went well, I was up and standing by midnight of the same day of surgery and felt great. Four days after surgery, I had a fever of 103.7 for 24 hours. My surgeon, although called repeatedly by the nurses even throughout the night, chose not to give me antibiotics. The fever broke with massive dosages of tylenol and Ibuprophen. I was sent home 3 days later after 7 days in hospital.
Sunday, January 13th 2008 - 12:38:43 PM

Your name: Henry

E-mail address:

Country: Canada

Comment or story:      In regards to using medical adhesives for the colostomy, I find that I am developping an allergic reaction to: TORBOT, SKINBOND, MEDICAL ADHESIVE spray made by HOLLISTER. These are no longer working for me. *With or without skin prep, I still develop an allergic reaction* Could this reaction be happening due to what I eat? Questions, comments would be greatly appreciated. I have had colostomy for 13 years.
Sunday, January 13th 2008 - 12:38:43 PM

Your name: Ronald

E-mail address:

Country: Philippines

Comment or story:      I had a colostomy 2005 which was brought about by ulcerative colitis. I was 28 then but underwent the surgery only 5 years after since the bleeding was continuous. Although I was taking pentasa and steroids, I was not that successful to keep the inflammation down. The colostomy is a welcome relief. I hide the bag under my polo shirt and to this day no one knows about it even in the office. I appreciate all the stories and comments posted because I learn many things again. Hope to get in touch with fellow ostomates too. I am 34-y-old now. Thanks
Wednesday, January 9th 2008 - 12:38:43 PM

Your name: David

E-mail address:

Country: USA

Comment or story:      Hi, I would like to know if anyone has had both an ostomy pouch that confines odors to the pouch AND has a good strong flange that stays on for a good three to seven days (five would be sufficient)
I have used ConvaTec where their flanges are good, but their pouches were not odor proof and Hollister vice-versa. If you have a name of a company, please forward it to me. Yes I have tried Chlorophyll tablets, etc... I am also aware there is no fool proof pouch/flange.
Thank you
Wednesday, January 9th 2008 - 12:38:43 PM

Your name: Coraine

E-mail address:

Country: Sheffield, UK

Comment or story:      Hi guys (and gals)
just dropped in to say I have had my Ileostomy called Charlie for nearly 24 years now (I'm 46)and although he sometimes plays up and I have had many other health problems mainly due to the Crohn's disease I suffer from BUT I love life and do lots of things and would love to help anyone that needs a shoulder to cry on or just to chat so get in touch anyone who would like to talk even if it's about the weather (I don't know much about ANY sport though sorry)
Tuesday, January 8th 2008 - 12:38:43 PM

Your name: Mandy

E-mail address:

Country: USA

Comment or story:      11/07 I went in the hospital for lap. surgery for endometriosis and woke up two weeks later with a colostomy and no memory of ICU. Now in Jan I am having severe pain when ever it becomes active and muscular pain around the stoma. Are these symptoms normal? and what can be done about them. I am looking forward to having it reversed in about six months. Do the muscles have to readjust again and is there any special diet to follow then?
Tuesday, January 8th 2008 - 12:38:43 PM

Your name: Pamela

E-mail address:

Country: USA

Comment or story:      I had an emergency colostomy after a ruptured colon. It has been 2+ weeks and I have sharp pains in my left side back and sometimes the ribs. Is this caused by food? I did eat some popcorn with my kids two days ago after which the extreme back pain started. I am still taking pain meds every 4/6 hours particularly since the back pain started. Any suggestions? Thank you.
Thursday, January 6th 2008 - 12:38:43 PM

Your name:	Henry
E-mail address:
Country:	Canada
Comment or story:	Hello everyone thank GOD for this forum. I have had a colostomy for 15 years. Everything was fine till last year, my problem is that I have an area on my skin, under my colostomy where no adhesive known to man will bond to my skin. We thought it was an allergy, it wasn't. We thought it was an allergy to appliances and/or adhesives, it wasn't. Then overnight it went away and by the next day it came back.I am thinking now I must be having a reaction because of something I am eating. For two years I have been taking B-100's because of unexplained tiredness, calcium magnesium, vitamin E, lecithin, Centrum select for people over 50, I am 56. I need your help, Questions, comments greatly appreciated. Best regards, Henry

Your name:	Darcey
E-mail address:
Country:	Canada
Comment or story:	My name is Darcey Miner I live in Nanaimo, British Columbia ,Canada. I was diagnosed with Crohn's disease at age 12 and fought with it till age 27 (1991) at that point I spent one year in hospital and a had several bowel resection finally ending up with a Colostomy I made one failed attempt at being re-hooked I have learned to live (not always easy) with it and realize that it saved my life this is just a vague outline of my experience

Your name:	Brian
E-mail address:
Country:	USA
Comment or story:	I was diagnosed with Crohn's at the age of 14 and I am now 36. I have been through 2 temp colostomies along with there reversals and now I am living with a permanent colostomy. I have been through the denial, the never wanting to leave the house because I thought of myself as a freak. I was a 2 sport athlete in high school with Baseball and Football and went on to play baseball after high school. Once I accepted my disease and what I had to do to live healthy my life changed. I would love to share my stories and thoughts with anyone who is going through any of this for the first time, or have been going through this for as long as I have. I am still very active, and still play baseball. I know allot of tricks to cover up the bag, and I know some good equipment to use as well in diff weather. I hope to hear from anyone and I would love to have a pen pal to talk to about the same things we might be going through. Good luck to everyone

Your name:	Matt
E-mail address:
Country:	USA
Comment or story:	To all that are facing a reversal, I can answer some of the questions you may have. I had one 5 months after a portion of my colon was removed. I was concerned just like everyone else is. I have never been one to drink a lot of fluids. I have always ate my meals and sipped on a drink. I now make water part of my intake when I eat. It helps to keep the colon flushed with water. I avoid Corn, Nuts and prepared foods such as served at fast food establishments. If you eat fast foods, your health will suffer. It is simply not good food for you, it just tastes good. After your surgery, eat soft foods like non breaded fish, chicken soup and such for at least a month. My doctor said eat anything you want and 3 days later I was back in the hospital because the reconnection blew out a portion of it. EAT SOFT FOODS! I also want to recommend that you take 1000 grams of B-12 every day for a year. It helps your body heal inside and that is what my personal doctor said. You will feel funny after the operation and several months after. You may feel movement within before your bowl movement. That is normal. Just hang in there and message me if you have any questions.

Your name:	Sandy
E-mail address:
Country:	USA
Comment or story:	April 2, 2008 had emergency surgery due to diverticulitis. Woke up with partial colon removal and temporary colostomy. Like everyone, it has been an emotional roller coaster. I have been trying to research which brand/style product is the most reliable (i.e. preventing leakage etc). It's all so confusing. Would love to have people I could talk to about this.

Your name:	Lucy
E-mail address:
Country:	Ireland
Comment or story:	Hi, I am 21 and had my colostomy done just before Christmas. This was due to a blocked bowel caused by another operation that I had 4 weeks previously. Initially I was very depressed but it's amazing how one can adjust! I am due to have a reversal in 5 weeks and was just wondering if there is anyone who has gone through it, that could maybe answer some questions? I am extremely nervous about getting this done and don't really have anyone else to talk to!

Your name:	Suzanne R.
E-mail address:
Country:	USA
Comment or story:	This is the first time I have contacted anyone about my surgery. My colon burst in 2005, and I was told that I should have died....I know now that God had other plans for my life...and I am so thankful that I am alive and well now. I will have to wear this bag for the rest of my life though... I have a question that I hope can be answered by someone who has had this problem, or knows of someone....I have developed a sore right next to my stoma...it is not healing because my bag covers it, and it can't get any air to heal. I have had this sore for about 2 months, and it keeps oozing. Does anyone have any suggestions on how I can get this sore to heal? I am thanking you all for providing a forum for people like me to come, and share.

Your name:	Dave L.
E-mail address:
Country:	Minnesota, USA
Comment or story:	I am 42 and on dec.28, 2007 my life changed. In the morning I had some gas pains, later on the pain had gotten worse. I went in to get checked out. An MRI later I was sent to get an emergency colostomy. Two hours later I had a bag and a long scar. I was lucky, I was going to go home and just sleep it off. I was told that if I did I might of not seen daylight. I had diverticulitis with a little paratonitis added in. I have a pencil in date of July 1st 2008 to get hooked back up. I have problems keep in my wafer to stick, and the smell of dumping my bag, I can clean out my shop when I do. my co-workers tease me but it is in good humor. what other choice do i have, make the best of it. like the saying goes, If you don't have the problem you just wouldn't understand. I hope my reversal goes good. I wasn't the least worried about it until i read some other comments. but I guess I would go threw it than be with the bag the rest of my life. I am a local truck driver with a few over nights, My life has changed a lot but I am still above ground.

Your name:	Raja Ram Parajuli
E-mail address:
Country:	Nepal
Comment or story:	I am from Nepal. My newborn baby have done Colostomy. Now he is in Five Months. Now we have a problem, in our country, here is not available "infant size colostomy bag". I am trying but not success. So I would like to request to all for "infant size colostomy Bag" Thank you.

Your name:	Mark M.
E-mail address:
Country:	USA
Comment or story:	I became sick with what I thought was a terrible stomach virus but it would not go away so a CT SCAN sent me to the hospital for perforated colon due to Diverticulitis. I have what should be a temporary colostomy. My surgery was Nov 16 07 and I'm due to see my surgeon again on the 27th of Mar 08. I have good days and not so good days and if you want to share your story with me I would appreciate it. I have to watch what I eat "or else" and energy level some days for what seems like no reason is down. Not sure if it is because of the illness or a symptom of feeling mentally down about my situation.

Your name:	Kathleen
E-mail address:
Country:	Boston, USA
Comment or story:	I had surgery in June, 2007 for recurrence of Ovarian Cancer and ended up with an infected and perforated colon. Another surgery in July to remove part of the colon and a temporary colostomy. Then the doctor decided that the temporary should be permanent but has now agreed to a reversal as long as I understand the risks - mostly infection. As much as I don't want to live like this forever I am a afraid of what could happen. Any help will be appreciated. I am seeing the GI surgeon in early April. Thanks

Your name:	Linda
E-mail address:
Country:	USA
Comment or story:	I've been reversed for about 7 months now. I could count the number of regular bowel movements I've had on my fingers. They are usually very little and smushy :( and I go several times a day most of the time. Sorry for the details...I have gas that is extremely smelly. It happens every day especially at night. I try to watch what I eat and it seems to make no difference. I try gas x and beano everyday, but its like taking nothing. I'm going to see my surgeon on Tuesday to see if he can figure out what may be going on. He suggested there may be a stenosis? Has anyone else that has been reversed had any problems? Please feel free to email me.

Your name:	Mary M.
E-mail address:
Country:	USA
Comment or story:	i just had a colostomy a few weeks ago and i would like to talk to someone who has had the same surgery . i feel like no one understands how i feel and i don't know who to talk to. can anyone suggest a support group of some sort?

Your name:	Tony B
E-mail address:
Country:	USA
Comment or story:	I am a 35 year old mother of three. In August '07 I had emergency surgery due to a perforated intestine caused by diverticulitis. It was a huge life changing experience. I went through bouts with depression, problems with my bag, skin issues, etc. You name it, I was dealing with it. I did some research once I was feeling better and discovered that a female issue I has dealing with could have contributed to my problem. I consulted a OB/GYN. They confirmed the problem was indeed contributing to the intestinal issues. I had my reversal surgery and a partial hysterectomy three weeks ago. I am doing well and shouldn't complain but I am having a ton of discomfort and pressure in my intestines. Is there anyone who has had a reversal that can help me with my questions? I guess I am just really scared that something could be wrong and I don't want to go through anymore surgery if I don't have to.

Your name:	Katie
E-mail address:
Country:	USA
Comment or story:	My daughter, Natalie, was born on October 19th, 2007, with no anus. She was taken to Vanderbilt Children's Hospital only a few hors after birth. Two days later, she had a colostomy. They are going to be able to fix it when she's about 18 months old. She has a few other minor problems, nothing life threatening, that require surgery to. All together there will be about 3 surgeries for her to go through. I'm just looking for someone to talk to that is going through, or has gone through the same thing. She is the only baby born in my town with this problem so it's really hard to talk to anyone about it.

Your name:	Dottie L.
E-mail address:
Country:	USA
Comment or story:	Hi. My colostomy was done Oct. 23 last year, and I'm still having trouble using the correct equipment. My bags keep getting loose and then I have leakage and have to change everything, including clothing. I am afraid to be away from home for a very long time. Also, I wonder if anyone has information about different brands they use, with good results, so that I can then try them. This is really causing desperation and frustration.

Your name:	Jean M.
E-mail address:
Country:	USA
Comment or story:	I have a question that I hope someone can answer. I had a colostomy in Aug 07. Our 40th wedding anniversary is in a few months and my husband wants to go to a resort for a few days to celebrate. My question is, how do you handle the disposal of the ostomy bag when in a hotel? I have a great spray that eliminates the odor when changing the bag so that would not be a problem.

Your name:	Carolyn Blackwell-Stark
E-mail address:
Country:	USA
Comment or story:	I had a permanent sigmoid colostomy Jan. 2007 due to a very rare muscosal melanoma on my rectum. I have tried to irrigate twice. Once with the ET nurse and once at home which was a disaster. I suddenly developed cramps, sweating, nausea and vomiting. I am reluctant to irrigate again for fear of a repeat situation. Has anyone ever experienced this?

Your name:	Sharon
E-mail address:
Country:	USA
Comment or story:	I've had a colostomy since December, 1996. I've tried several times to irrigate without success. Now, I'm planning to start the Weight Watchers Program and would like to try irrigation again because the diet requires fruits and vegetables which make the ostomy very active. Is there anyone that has a colostomy, that irrigates and is or has been on Weight Watchers?

Your name:	Patricia
E-mail address:
Country:	Barbados
Comment or story:	I am 51 yrs old. About ten years ago I had surgery for endometriosis received a hysterectomy .On November 7th 2007 I was rush to emergency clinic x-rays showed a blockage in my intestines. Went to surgery on the 14th,woke up with a colostomy .Now I am being told that the colostomy cannot be reversed because of the amount of scar tissues found in the colon. I am looking for a GI to have a second opinion. So anyone out there willing to help I would be extremely grateful

Your name:	Rhonda
E-mail address:
Country:	USA
Comment or story:	Hi, Im 41 years old and went through chemo and radiation for cervical cancer in Jan and Feb of 2007. Due to complications from internal radiation I had to have a total exoneration and colostomy and urostomy. I am handleing all of it fine with a few small problems with the red and sore skin around the stoma. If anyone has any ideas on how to deal with this please let me know. Also how do you deal with dating? My friends have been wonderful through all this and they listen, but they just don't understand, I mean they aren't the ones going through this. Would love to talk to someone, Im also a good listener, so email me.

Your name:	Emily
E-mail address:
Country:	USA
Comment or story:	My 73-year-old mother had an emergency ileostomy in September of 2007 after a burst appendix and a burst colon. She had all kinds of trouble adjusting to the pouch and had a lot of problems with raw skin. When I saw how raw and bleeding the skin was, it reminded of the bad diaper rashes my kids used to get. So I bought Desitin cream and started putting that on mother's raw skin. It worked like a charm! She was also having trouble staying hydrated, so I read that PediaLyte has 7 times the electrolytes as Gatorade. She started drinking a liter of PediaLyte every day, in addition to Gatorade, which helped tremendously. She just had her reversal surgery last Friday, 1/26/08. The surgery went very well. It's been 3 days and we're still waiting for her to pass gas. They won't let her drink or eat anything until that occurs and she's getting a little cranky. She has some abdominal pain from the incision, but overall I think it's going well.

Your name:	Diane
E-mail address:
Country:	USA
Comment or story:	Hi All: I have been a frequent reader and have posted a few times over the months, but now I am the one who needs a little advice and information. I had a colostomy and since then have ended up with diversion colitis and colitis Recently the stool coming through to the stoma has thicken and hurts as it passes through the stoma. My gastro doctor has suggested I might need to have the stoma enlarged Has anyone out there had this done.?? Or could foods from time to time casue this: what we eat.

Your name:	Bill L.
E-mail address:
Country:	USA
Comment or story:	Today was my first using colostomy irrigation and it was a mess. An hour later I am writing this and wondering if it gets better. The discharge, while welcomed, was immense. I have to ask if the amount of discharge will become more predictable and manageable as time passes. I am committed to continued irrigation as a sensible solution to daily living with a permanent colostomy. Any comments or suggestions are greatly appreciated. Thanks, Bill

Your name:	Patty
E-mail address:
Country:	USA
Comment or story:	QUESTION-- Has anyone heard of a mucus ball that develops in the anus even though nothing is suppose to go there if you have a colostomy???? If you have , please help me and share your story with me.. It happened to me and the pain was horrible and I never hear anyone talk about it. Thank you, Patty.

Your name:	Mary Elizabeth
E-mail address:
Country:	USA
Comment or story:	I have more of a question than a comment. Following a spinal cord injury in 1998 which resulted in my becoming a paraplegic, I had a colostomy in 2002. Since then, I have had what started as occasional and is now almost daily, "blow outs" from my rectum. These blow outs are not bowel, but a very foul smelling slimy mucous. Has anyone else had this problem? I would have the bowel blow outs before the surgery, which limited my activities. But not, these blow outs are even more limiting. I am anxious to hear how others have dealt with this.

Your name:	Tina.
E-mail address:
Country:	USA
Comment or story:	Hi, I have a left side colostomy. got it in November I have a lot of pain on left side when i walk, can anyone tell me why?

Your name:	Jessi R.
E-mail address:
Country:	USA
Comment or story:	I too had a hysterectomy due to endometrial cancer, and wound up with a bad infection after the surgery and finally a rupture and after two weeks in a medically induced coma, I wound up with a transverse colostomy. Which has prolapsed, become ulcerated, constantly makes noise and runs non stop, I use Hollister due to trying other products that leaked didnt work for me, and I am supposed to have a reversal soon, and am scared to death, as it is hard to live with this , but dont want to take any chances of winding up in ICU in a coma again, even though they are running tests to make sure my colon is working properly or something, and taking no chances, and trying to do laproscopy thru the stoma with local, you never know when they get in there what they will find, and to take a chance and wind up in ICU, what should I do. I need some support thru this and help. As what is my choice to live with it or take a chance again. Jessie

Your name:	Sonja
E-mail address:
Country:	USA
Comment or story:	I have a Colostomy since 1994. I also have had a Urostomy since 1967. I am 53 years old and I would love to have some Pen pals to write to and/or talk to.

Your name:	Brenda
E-mail address:
Country:	USA
Comment or story:	On Nov 1st, 2007, I went into the hospital to have a sigmoid colectomy, colo-vaginal fistula removal, abdominal wall hernia repair and the removal of my remaining right ovary and falopian tube. The surgery went well, I was up and standing by midnight of the same day of surgery and felt great. Four days after surgery, I had a fever of 103.7 for 24 hours. My surgeon, although called repeatedly by the nurses even throughout the night, chose not to give me antibiotics. The fever broke with massive dosages of tylenol and Ibuprophen. I was sent home 3 days later after 7 days in hospital.