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Click here to post your Colostomy Story
| Your name: | Rose |
| E-mail address: | rosej4@gmail.com |
| Country: | USA |
| Comment or story: | My mother had to have surgery in November and was given a "temp"
colostomy. However, the stoma retracted and she wound up becoming septic
and needed to have it revised. The doctors really do not want to reverse
it now. She has a very hard time with it and outside of emptying it, I
basically do all of the care for it. However, we have been having some problems with it in the last 1-2 months. She developed two ulcers above her stoma and they are not really sure why. In addition, she has been having very high output which is very loose, having to empty it at least 6 times a day. Her surgeon says don't eat for 3 days. Great advice huh... And just last week, she mentioned to me that her medications are coming out whole in her bag. Has anyone had any of these issues? Needless to say it has been a long process with this whole thing and looking for some guidance. Thanks in advance |
| Your name: | Michelle |
| E-mail address: | shellypooh_23@hotmail.com |
| Country: | USA |
| Comment or story: | I am thirty one...golly. :) Hard to believe. I was wanting to find someone that could relate...No one seems to. lol ...I have had 7 abdominal surgeries...one of which was my c-section...colostomy, reversed, ileostomy, reversed and I cant remember how much colon removed...had that done twice, well, I am tired of taking Imodium done that for yrs on top of yrs and it doesn't help, took 15 pills a day still diarrhea and I'm taking Bentyl what a joke still have problems, I have solitary ulcer syndrome have went to therapy doesn't help bleeding ulcer again and I have to have a permanent colostomy done I will find out my surgery date on the 29th. I am looking forward for it:) I am tired of accidents and running to the bathroom. |
| Your name: | Marlene |
| E-mail address: | jjwc@juno.com |
| Country: | USA |
| Comment or story: | My colostomy was received 22 Dec 2009..What a Xmas present !!! All kinds of problems with leakage no matter what technique was used. Sometimes had to change the pouch in minutes. Then after the operation to install a permanent stoma , like magic all the problems went down the drain. Cleaning up is easier and the pouch stays in place for over five days... Looking for a Ostomy Chapter in the area of College Park Maryland. |
| Your name: | Tammy Fields |
| E-mail address: | groomer4748@aol.com |
| Country: | USA |
| Comment or story: | I am a 52 year old woman who went for a colonoscopy @ 50 and was found to have 3rd stage colorectal cancer after having a total hysterectomy and a ileostomy for 2 years. I am not able to have the reversal because of an opening that can not be closed.I am going to have a permanent colostomy. My question is I want to be able to irrigate and have heard that some stoma placements don't fully allow the colon to empty. any thoughts on best placement for emptying and for comfort with clothing? |
| Your name: | Vivian Castillano |
| E-mail address: | vicas1063@yahoo.com |
| Country: | Philippines |
| Comment or story: | I have this colostomy since year 2002 and because of this my husband left me. its been up and down with this thing but I have to go on and live with this. I need someone to talk to and compare notes or just be there to listen. |
| Your name: | Nixa Lopez |
| E-mail address: | nixa@yahoo.com |
| Country: | USA |
| Comment or story: | I had rectal cancer in 2006. and was told that I have to wear a bag for the rest of my life. t was hard to deal with this change. but I am doing .if anyone will like to email it will be nice |
| Your name: | Betty Horsley |
| E-mail address: | pookw@comcast.net |
| Country: | USA |
| Comment or story: | I WANT TO FIND SOMEONE WHO UNDERSTANDS ME I HAVE A COLOSTOMY AND LOOKING FOR A FRIEND TO SHARE WITH IM 58 AND I WAS SEPTIC INSIDE AND ALMOST LOST MY LIFE ENDED UP WITH A BAG. AND HAD 2 STROKES AND 1 SEIZURE. WOULD LIKE TO SHARE BETTY |
| Your name: | Sue Tappin |
| E-mail address: | tacres@nbnet.nb.ca |
| Country: | Canada |
| Comment or story: | After 5 agonizing days my bowel ruptured and I become the proud new owner of a colostomy on Feb 12 2010. Didn't like it much but the alternative sucked. So being a farmer and already being used to dealing with all manner of manure.... I got on with living. 3 months later I'm pretty much back to normal.... well except for the colostomy thing. But it is only a 800 Lb. gorilla in the room if you let it be. I chose not to let it. Love to hear from you all |
| Your name: | Chad |
| E-mail address: | chadbryden@comcast.net |
| Country: | USA |
| Comment or story: | I had surgery in August 2008, due a doctor perforating the side of my colon during a standard colonoscopy. Two days later was dying, rushed to the hospital and there was we’re it all happened - total colon was removed. Waking up 3 days later with a bag for about 8 months. Had the reversal done in early 2010. Still having a lot of itchy times, 15-20 bowel movements a day, the rest of my body seems to be fatigued all the time (extensive leg, hip and back pain), and very restless nights. I'm just not sure if all this is common? Any recommendations are appreciated. |
| Your name: | Ken F |
| E-mail address: | whatsnu@bellsouth.net |
| Country: | USA |
| Comment or story: | Good news! After emergency surgery, a colostomy, a HUGE incision
wound, I have recently gone back for reversal surgery, am put back
together, (no more colostomy!) and am "going" the old fashioned way! I have a few tips and tidbits to share, and will make more posts ASAP. If anyone wants to e-mail with questions. Ken |
| Your name: | Diana |
| E-mail address: | dntstimson@att.net |
| Country: | USA |
| Comment or story: | I was having surgery to remove my ovarian cyst that was absessed. My surgeon found an infection and my colon was infused into my ovary. He did emergency surgery and removed a foot of my colon and I now have a colostomy. At first it was hard to deal with. Trying to find that right combination of appliances so that there are no leaks is not fun. I think we finally found the one that works for me. My colostomy is reversible so I am told. I can't wait until I can have the surgery and get back to normal. |
| Your name: | Jo-Anne |
| E-mail address: | jojodelafosse@bell.net |
| Country: | Canada |
| Comment or story: | Hi Colostomy mates, Hope you are all coping with your bags. I have had a colostomy due to diverticulitis and a tumor. I also had a reversal. Feeling better now. So if any of you need any type of information, please contact me and it will be my pleasure to help you out. I don't say I have all the answers, but I most certainly have a lot. I will give you the most info that I can to help you along. Be well and God bless, Jojo xoxo |
| Your name: | Rose |
| E-mail address: | rosie@npgcable.com |
| Country: | united states |
| Comment or story: | I am on my third hernia, and am going to have another colostomy on the left side of my stomach on April 1st. Has anybody else had to go through this? Thank you. Rose |
| Your name: | Donnie |
| E-mail address: | volfan54@msn.com |
| Country: | USA |
| Comment or story: | If someone could tell me. I have a colostomy and where my rectum was, an odor from the mucus is bothering me is there any product cream or spray that will help the odor. Had 3300/lbs of steel dropped from forklift on top of me in 1994. |
| Your name: | Henry |
| E-mail address: | henryeshkibok@hotmail.com |
| Country: | Canada |
| Comment or story: | September 1993 is when I had my colostomy. first of all get rid of the Karaya paste its useless. use stoma paste by Convatec. squeeze out a bead of stoma paste about a quarter inch thick all around the hole where the stoma will stick through the flange. skin has to be 100 percent clean,to make it long lasting use TORBOT bonding cement or spray on MEDICAL ADHESIVE by Hollister stock #7730.which ever one you use spray on or cement BOTH sides, to make it last even longer put on several coats of either adhesive/cement. let it air dry for a minute or two no longer, it must be tacky when you put it all together. make sure center of stoma is center of precut hole on flange, then gently put flange onto belly of patient, hold firmly for a few minutes. you would have already precut 4 pieces of equal length of tape, place tape on all 4 sides of flange/belly, your joining belly and flange together with the tape. BRUCE MEDICAL has all the supplies and answers you require. if someone develops red weeping/denuded skin use MICRO-GUARD by Sween its a antifungal cream or SENSI-CARE protective barrier 3 by ConvaTec. good luck, may GOD bless you, and by all means, please keep me informed. Henry |
| Your name: | Johnny |
| E-mail address: | warbringer2007@yahoo.com |
| Country: | USA |
| Comment or story: | I have been fighting diverticulitis for the past couple of years and
finally had to have emergency surgery performed, to remove the diseased
part of my lower intestines. Unfortunately I have had to where the usual
colostomy bag. I have been scheduled to go in for the reversal surgery
March 2010 and have the bag taken off. I noticed there were a few people on here who were having trouble locating Colostomy supplies because they live in places where obtaining these supplies are minimal. I should have a good amount of clean and "not" used supplies that I would be more then happy to donate, if you are in desperate need of these items. Just send me an email and I will let you know what I have to send after the first week of March 2010. |
| Your name: | Donna |
| E-mail address: | buffa801@rcn.com |
| Country: | USA |
| Comment or story: | I've had colosotomy surgery in 2006 and now do irrigation. My concern is i have a bulging side now and it looks terrible, does anyone else have that problem. My doctors just say nothing to worry about. Seems like it might be a hernia. I might make an appointment with my surgeon. |
| Your name: | Chantel Mack |
| E-mail address: | choandtel@yahoo.com |
| Country: | USA |
| Comment or story: | In July of 2008 was shot and when I woke up in the hospital 2 days later I had a colostomy. At first i was horrified but at the same time happy to be alive. I had it for 7 months before the Doctors decided to do the reversal. I did a lot of research trying to get some idea of what to expect. I notice a lot of people on here have been through different experiences that led to their Ileostomy and I definitely sympathize and can relate. it's been a year for me and I'm still not back to normal but i am happy that I had the reversal. Hang in there because it gets better. God bless! |
| Your name: | Franklin |
| E-mail address: | sfranklinrussellii@yahoo.com |
| Country: | USA |
| Comment or story: | I came across this site and need some info concerning purchasing ostomy equipment. If there is anyone who lives in the Atlanta/College area, I will be in that area for about two weeks. I am running out of ostomy supplies and the order I made is delayed. I need to find an ostomy supply store in the Atlanta/College Park area wherein I can restock if need be. Can anyone help me out by supplying name, address and/or telephone number of such a place? |
| Your name: | Greg Murphy |
| E-mail address: | gmurphy9@woh.rr.com |
| Country: | USA |
| Comment or story: | I was diagnosed with colon rectal cancer in 2006. When I woke up I was wearing a bag. i felt like my life was over. No one at the V.A. told me much about carring and maintaining my ostomy. Everything I learned was either trial and error or a private hospital. I learned that "pink tape" around the wafer helps greatly. now I am dealing with noise and smell. My life isn't over as I once thought it is great and I am blessed i even wrote a top 10 reasons why a bag was better than a rectum |
| Your name: | Hennie Strydom |
| E-mail address: | ncpr...@telkomsa.net |
| Country: | South Africa |
| Comment or story: | 6 Aug 2008 was my worst day as I woke up from surgery in the
greatest of pain as if my innards was burning up. My wife told me that
cancerous growth was removed from the rectum and a permanent colostomy
was performed. Now 22 December 2009 I still struggle to live with this.
After activity for a day or so and the bowel emptied it feels as if all
is ok, no stomach pain etc. The constant pain however is to sit, it is
hard to explain but the surgeons used the anus skin to sow up the gaping
hole where the rectum resided. Now some or most of the nerves have
recovered and causes unbearable pain. Please somebody, let me know of your similar experience as this is a very lonely life. |
| Your name: | Keith |
| E-mail address: | KEIT...@ROCKETMAIL.COM |
| Country: | USA |
| Comment or story: | Like so many others i was rushed to hospital to have emergency surgery from Diverticlitis. It was very scary for me as i have been healthy my whole life. When the nurse came in to check me out was when i first saw my colostomy. With a little help from the drugs and morphine i lost it.I tried to escape twice and actually made it across the parking lot the second time before i was tackeld and found numerous needles jabbed in me to knock me out. Turns out what ever they were giving me messed me up real bad. After things were changed i got my sanity back and accepted what had happened and my new stoma. Having no insurance has turned out to be the worst of it all. Now i need to figure out how to fund the reversal surgery. Does anyone know how much this reversal surgery cost? Need to start selling things to fund it, Please email me and let me know what kind of money i need to raise if you know, Much appreciated, KEITH |
| Your name: | delia |
| E-mail address: | deli...@yahoo.com |
| Country: | USA |
| Comment or story: | I am a nurse and want to ask what is the best way to apply the
karaya paste and powder to the stoma: do you apply the flange first and
then the paste before the bag application, or do you put the paste on
then the bag? And what do you do with the powder- is that used with the
paste or separately? And do you use skin prep to the skin under the paper flange to keep it in tact? Do any of you use a liquid antacid around the stoma instead; like Maalox. Take care, Delia |
| Your name: | Michelle |
| E-mail address: | shel...@yahoo.com |
| Country: | USA |
| Comment or story: | Hi everyone, My mother recently had surgery for ovarian cancer that spread to the rectum and now has a colostomy bag. She is having the worst time with the colostomy bag sticking and not leaking. She is starting chemo therapy next week and we would really like to get the colostomy bag problems resolved sooner than later. She is having home health nurses come in but they can't seem to get it right either. My mom is a young 70 year old that loves to travel, exercise, garden and be the best mom and wife. Any advice would be greatly appreciated as she is having a constant leakage problems and even woke up this morning with everything all over her. Thank you! Michele |
| Your name: | Karen |
| E-mail address: | kmye...@earthlink.net |
| Country: | USA |
| Comment or story: | I have had my colon removed and have had the reversal, but would
like some feedback from others who have had the same procedure. It's
been 6 months, and I'm still having some diarrhea and am wondering what
foods might help and especially what size portions work for people.
Sometimes I'm pretty uncomfortable, but would like to talk to others who
have had the same done. Karen |
| Your name: | Jenn |
| E-mail address: | scob...@hotmail.com |
| Country: | Canada |
| Comment or story: | I was reading some of the posts on this site and noticed that many people are worried about the reversal surgery. I had colitis for five years and in July 2009 I had my entire large intestine removed, a j-pouch made and a temporary ileostomy. 8 days ago I had the ileostomy taken down and it has been amazing for me. I keep waiting for things to get worse but even after only 8 days things are great! I have absolutely no leaking, no accidents and no urgency. I feel almost completely back to my normal self and even the nights are not that bad. So far I only normally get up 2-3 times during the night and I know that eventually this too will get better. I can eat anything I want now and not having too worry about emptying my ostomy bag has been so nice. I hope that this makes others feel better about the reversal surgery although I do know that I have had an extremely good outcome and that everyone will be different. |
| Your name: | Steve |
| E-mail address: | rive...@cox.net |
| Country: | USA |
| Comment or story: | I had a stoma hernia repaired in April of this year. I still have to take laxatives because the mesh made the opening in my stoma smaller. I feel like I have gas pains all the time. Is taking laxatives all the time bad? What else can I do? Also, does anyone know of anything out there that covers the bag so it isn't seen and is covered by Blue/Cross. Thanks Steve |
| Your name: | Chandra |
| E-mail address: | aker...@yahoo.com |
| Country: | USA |
| Comment or story: | I went to the hospital 10-20-09 for abdominal pains. I ended up having emergency surgery because my diverticulum had ruptured due to undiagnosed diverticulitis. Now Im stuck with a colostomy bag for the next three months. Its a big transition for me cuz I have never had any serious health conditions or surgeries before and at first I was bitter about it. I am a social person who likes to get out and about with friends and I am a musical performer. Not only that, I work a very public job and I don't want people to know that I have this because it is embarrassing. I know its not permanent but it just sucks in the meantime because like I said, I don't want people to know my condition. I cried the first few days but Im over it all now and I'm okay with it. (other than the embarrassing ostomy bag that smells and makes noises whenever it wants.) I know it could be worse and I know there are people with colostomies younger than myself and it makes me sad for them. It jus gets me down because my girlfriend and myself are young and she is so beautiful and I feel like a burden to her because for some reason my short term disability didn't go thru with my job so I am unable to bring a household income for the next few months and the holidays are around the corner. She has a 5 year old son that I raise as my own and I feel awful that I cannot help provide for him and all this weight is on my girls shoulders. I jus feel like she resents me sometimes. I know she dont mean to but it shows. I get depressed thinking that she doesnt and or will not find me attractive anymore because of all of my scarring and the filthy mess and smell associated with cleaning my stoma and emptying my bag. I dont know, Im just rambling. I guess getting all the stress off my chest. It sucks but I know its not permanent. Jus sharing my story. |
| Your name: | Wayne |
| E-mail address: | wayn...@yahoo.com |
| Country: | Atlanta, GA USA |
| Comment or story: | I am an RN and have a patient who has a colosomy which leaks and comes off way too often and is a miserable experience for this lady and her daughter who is her caregiver.WE have tried evrything and have had expert advise from ET nurses and docters but nothing works.There is no reason for this since the skin surrounding the stoma is smooth and flat.I have never seen anything like this in all of my years in nursing.There must be a stronger adhesive designed for cases like these.Any advise would be greatly appreciated. |
| Your name: | Jim Campbell |
| E-mail address: | lajf...@gmail.com |
| Country: | USA |
| Comment or story: | I had a colostomy 8 months ago and, because of the placement of the ostomy, I now have a "difficult" ostomy. I have had lots of problems with tearing of skin around the ostomy and subsequent pain and irritation. What was happening was my belt, which fit over the ostomy, was tight enough to hold my pants up, but every time I turned or twisted, that belt pressure was enough to cause more rawness. My solution: buy pants two sizes too big and wear suspenders. Works like a charm. |
| Your name: | Kaitlyn |
| E-mail address: | mnrv...@aol.com |
| Country: | USA |
| Comment or story: | Hi my name is kaitlyn and I'm 14 years old. i have Crohn's disease and i had to have a loop ileostomy. it was supposed to be temporary but its been a year now and I'm not where they want me to be. as a matter of fact the want to remove my colon and then I will have the bag forever. I am really sad about this because i hate surgeries and I'm scared. I wish I knew someone my age with an ileostomy. or someone my age who has had their colon removed. |
| Your name: | Sherry |
| E-mail address: | mmdl...@bellsouth.net |
| Country: | USA |
| Comment or story: | Hi everyone, Life with the stoma is getting better. i am still having problems with fluid retention and leakage. My Doctor wants me to have a reversal, i am not sure. I almost did not make it with the first surgery. I am scared. I would like to hear from some of you as to your feelings on have a reversal or staying with the ileostomy. Please email me with how you feel or what problems or success you have had with a reversal. Thanks |
| Your name: | Floella |
| E-mail address: | jimf...@sbcglobal.net |
| Country: | USA |
| Comment or story: | This is not about me it is about my baby sister Kathy. she had a
colostomy reversal 6 months ago. She has been in misery ever since. She
has constant Diarrhea 24 -7. If she tries to go somewhere she is
miserable. lots of accidents. Also her behind looks like a giant
blister or burn. And she is in Pain from it. Please if anyone can let me know if they have had any of this. We would appreciate any info. Thanks Bunches. Floella |
| Your name: | Lucy |
| E-mail address: | flzinyuku@yahoo.co.uk |
| Country: | Zimbabwe |
| Comment or story: | I was diagnosed with with rectum cancer hence there was need for an operation. The cancer had spread in the rectum so there was no other option other than removing the rectum hence I ended up with a permanent stoma. Before the operation I had no proper counseling and I was not even aware of the advantages and the disadvantages. I live in the remote parts of Zimbabwe where people are mostly poor and have no access to such information. Its been two years now since my operation and I have never seen anyone who has a stoma too. I'm now very antisocial because people don't understand my condition. Since it is very difficult to have access to colostomy bags I end up improvising hence I will not be able to go to work or even meet out with friends. I will be more than happy if anyone can help me to get colostomy bags because life for me is now very complicated. |
| Your name: | Kim |
| E-mail address: | kim@bagsfirst.com |
| Country: | Canada |
| Comment or story: | my mom had intestinal cancer and was fitted with the bag due to it.
the problem is that it has been about 4 months since the surgery and she
is in unbearable pain nightly.... is this normal? when asking doctors
they all say its normal... I don't understand how this can be normal to
live your life in constant pain... I would love to get some feedback
from anyone who also has had this procedure. Thanks, concerned daughter |
| Your name: | Susan |
| E-mail address: | susanhalloran@comcast.net |
| Country: | USA |
| Comment or story: | I had a colostomy last year. I have a spinal cord injury, and now my belly is so big I can't find clothes to wear. Does anyone else have this problem, and what do people do about this? |
| Your name: | passion |
| E-mail address: | blaque_passion413@yahoo.com |
| Country: | USA |
| Comment or story: | Hello everyone you know I'm almost in tears to read this stories, and it just wouldn't be right if i didn't tell my own and help and encourage whom every wants to talk. When I first found this site i was looking for a Dr. that can remove my colostomy scar. See when i was 17 years old i was date rape. I got pregnant and miscarriage the baby my Dr. was to do a D&c and remove the baby, i was only 4 months at the time so you know he died. Well some how she perforated my sigmoid colon cause to to wear a colostomy bag for 2 1/2 . when i woke up and they explain what happen i just felt like God was punishing me. I went through a lot of the same this you all are talking about but i held on to faith and i made it. Know it was not easy i was only 17 my senior year and i had a 2year old but i made if you all every need to talk or have question i feel like it's my duty to help please! i'm here for you all. |
| Your name: | Marie |
| E-mail address: | cutiegram@yahoo.com |
| Country: | USA |
| Comment or story: | I had rectal cancer and now I have a colostomy. My problem--other than the obvious--is: since my surgery I have gained about 50 lbs. I am 66 years old and have had struggled with my weight most of my adult life, but until the surgery I had relative control over my weight. Now I can't seem to stop eating!! What can I do? Please help me....I hate myself |
| Your name: | Peter Hewson |
| E-mail address: | petter.hewson@htmail.com |
| Country: | England |
| Comment or story: | I have got a Colostomy I have had it for 18yrs now and the Dr's said there is a experimental procedure they would like to offer me where it means I do not hve to have the Colostomy bag any more but I am rather nervous about having it done is there any advice any body can give me me e-mail addy is peter. hewson @ hotmail .com please just ignore the spaces I look forward to your reply |
| Your name: | Thomas |
| E-mail address: | jones468@btinternet.com |
| Country: | England |
| Comment or story: | Well it's 11 years to the day since I had surgery for Stage 'B' colon cancer. This resulted in a permanent colostomy and was followed by 5 weeks of daily radiotherapy, and then that was it, I was sent on my way with the usual follow up checks. For the first 12 months I struggled with the bag, irregular BM's resulting in constipation and the runs caused many problems with leakage etc. Then I badgered my surgeon and stoma nurse to let me try irrigation. They were indifferent at first but eventually gave in. From the day I started irrigating 10 years ago, irrigation immediately improved my quality of life many fold. In fact I find the longer I have been irrigating, the more my body has got used to it, and it has enabled me to lead a completely normal life where I, and not my stoma is the boss !! |
| Your name: | Robert Harrison |
| E-mail address: | robbo48@live.com |
| Country: | England |
| Comment or story: | hi all you colostomates, my name is rob and in 2007 my world fell apart as i was diagnosed with bowel&liver cancer, to my horror I was told I would have to have a bag fitted and it was a bit of a shock to the system, I first had an emergency colostomy done, then underwent radio/chemo for 5 weeks then back to hospital last year to have my tumor removed from my bowel, they also re-sited my bag and told me this would now be my new stoma. nothing has been done about the one on my liver yet but don't hold out to much hope about getting anything done. the docs are not saying much when I ask about my liver, they just say everything is ok up to now. I am coping with the bag but I am finding it hard to get undressed in front of my wife due to the scars left from the surgery we are now 12 month down the line now and we hardly have any close contact, maybe its just me I don't now my wife is very understanding and tries to bring me out of my shell |
| Your name: | Andrew Wright |
| E-mail address: | drew.wright54@yahoo.com |
| Country: | USA |
| Comment or story: | had mine for 10 years now and i think that i am finally getting to receive the benefits that it was supposed to bring now after a couple more surgeries (proctectomy scar tissue removal) chrons can be a real pain. |
| Your name: | Jane Reynolds-Tate |
| E-mail address: | srt@uwclub.net |
| Country: | England |
| Comment or story: | My dad 'Jack' has a stoma and colostomy bag. He had his operation last September 2008. He was very ill at the time with a rectal tumor. He has had this successfully removed and has been given the all clear. I feel he has been so lucky. He has done so well and has recovered 90%. Trouble is he feels he can't live a normal life with his new bag, he feel scared to go out, and won't consider a car journey at all. Is there anyone who can related to this chap who's been given a second chance of life who is finding it extremely hard to move forward. I will print off any replies and read them to him (also short sighted!) I feel this may help him to re tune his not so positive mind. Thank you Jane his daughter. |
| Your name: | lucy degidon |
| E-mail address: | lucycat1203@yahoo.com |
| Country: | usa |
| Comment or story: | I've had a colostomy for seven years. Maybe that inspired me, as an
artist, to start what I call- a public bathroom beautification project.
Our public bathrooms being ugly plus dirty. I started in my local park
ladies room, doing animal paintings on the stall, outside and in. It is
a big hit with the women and children who use the bathroom and see the
art. The local paper interviewed me, and photographed me next to my art-work. Whether you have a colosomy or the natural elimination system, we all should feel calm and relaxed in our moments of necessary elimination. Am I right? |
| Your name: | Jeri |
| E-mail address: | jscrenci@verizon.net |
| Country: | USA |
| Comment or story: | lesleym52- thank you for your comments on bags and getting them to
stick. Had diverticulitis and emergency surgery 6/29/09. will have colostomy through Oct or Nov. Have had some trouble with the bags not lasting 3 or 4 days. always seem to lift. Nice to know I am not alone. Thank you |
| Your name: | Karlyn |
| E-mail address: | karlynbeavers@ymail.com |
| Country: | USA |
| Comment or story: | Hello everyone, I just wanted to thank everyone one here and know that we are strong people. I have had Crohn's since I was 17 and last year when I turned 40 I had to have my surgery "Happy Birthday to me" but my doctor is amazing both my GI and Surgeon are amazing and I am lucky enough to put my health in there hands. I found that this page is one that when I am have a bad tummy day as my daughter calls it I can come here and read everyone's else story and know that I am not alone. My biggest problem is that I can only wear the bags for a day and half at the most without getting an infection so I have to purchase a box every other month. So again thanks to everyone who offers advise and I hope that any I respond to can help as well. God bless and here's to the good days. |
| Your name: | Rita West |
| E-mail address: | pfwest@hotmail.com |
| Country: | USA |
| Comment or story: | I had colon surgery on March 19 2009 and recovered well while in the
hospital. I spend 5 days at the hospital. On March 29 I became really
ill went to the emergency room and they admitted me and had emergency
surgery the next day and ending up with a colostomy bag. Hated it so
much didn't recover as quickly as before. Spend 4 days in ICU then 2
days later I woke up (they told me this don't remember it) and
complained about shortness of breath. I developed blood clots cause of
the heparin. Nobody knew I was allergic to it, nearly died and they flew
me with flight life to an out of state hospital. Now I would like to do
my reverse one, really but I am so scared that something would go wrong
again. Overall I do recover very quickly was back at work in about 6
weeks after first surgery. what questions should I ask the doctor I am
going to see my surgeon in a week. Please what can I of should I expect
from this surgery. Thank you |
| Your name: | lesley |
| E-mail address: | lesleym52@hotmail.com |
| Country: | usa |
| Comment or story: | i have had a colostomy due to diverticulitis since 3/14/09. i have found the Hollister bags to stick the best. i use the skin prep. (after washing and drying the area well) and then the Karaya powder close to the stoma. do this 3 times, alternating skin prep and karaya, its called crusting. it helps your skin and helps the bag stick. the trick is to cut the hole in the bag exactly to fit the stoma. put the bag on looking in the mirror, start at the bottom. only the stoma should be exposed in the bag, no skin, press on the bag to help seal it. this has been what has worked from having a reversal on 9/10/09 |
| Your name: | Gaynor |
| E-mail address: | chloelouise1980@aol.com |
| Country: | England |
| Comment or story: | Hi, i have recently had a bag after I was diagnosed with Colitis but later found out I had amoebic colitis which I caught whilst been on holiday from the water, very rare in this country to be ill from this apparently. the thing is I was 12 weeks pregnant when diagnosed with this and had to have most of my large bowel removed and also part of my small too, i lost 3 stone in weight due to been so ill and doctors putting it down to my pregnancy. I have been told that i can have a reversal but wondered if anyone has regretted this...... by the way I am now 25 weeks pregnant and everything is fine, doctors don't know how she survived all the surgery. i have accepted my bag as it saved my life but am worried about the reversal.... |
| Your name: | Tashia Roberson |
| E-mail address: | reneawllms@yahoo.com |
| Country: | Edgecome |
| Comment or story: | I am a single mother of 8. I had my colostomy since 1995.looking for a friend, someone I can relate with me. Iam saved and love God. love to talk. |
| Your name: | Billy |
| E-mail address: | willett04@fuse.net |
| Country: | USA |
| Comment or story: | Had colostomy takedown surgery 30 days ago and it was really a piece of cake. I was only in the hospital 4 days and back to work in 7 days. Doctor said as long as I ate a high fiber diet I should be be ok form now on. I had colostomy due to diverticulitis. |
| Your name: | RENA |
| E-mail address: | krk.kerr@yahoo.com |
| Country: | USA |
| Comment or story: | hi everyone and may god bless each and everyone of you. i have read a lot of your stories and i can relate to a lot of them because i had colon cancer and had a stoma. i was scared too because i had never heard of one. I've experienced a lot of your pain your feelings and confusion. i wish i could talk to alot of you one on one. i too didn't want to go around anyone because of the smell. but a lot of people would tell me they could not smell it. so I guess it was me? just knowing it was there. i prayed a whole lot thru that time and still do. i pray for you too. i did't want to tell my doctor what i was feeling because i was scared there might be something else wrong. but god blessed me with good doctors and home nurses and family that helped me a lot. if you live in or around Chicago, Illinois there is a good doctor there his name is George j Kontos he's on the web it will say born in Chicago. he was a god send . he will treat you like family not a piece of meat. he will sit down with you and talk with you about any thing. he won't let you go until your well. I've been thru the reversal which i had 3yrs later. i still feel a lot of anxity, fear but you know what if i had to go thru what i went thru in order to help someone else than it was worth it. it takes a while for your mind to heal along with your body. i'm not where i want to be but with god's help i will get there. i just want you to know i love each and every one of you and i speak blessings and healing on each and everyone. |
| Your name: | Peter Hewson |
| E-mail address: | peter.hewson@hotmail.com |
| Country: | England |
| Comment or story: | I have a problem with my bowels I have a colostomy but my body is trying to push goo out of my bum and some times undigested food what should I do please help because I am in great pain at the moment |
| Your name: | Brian |
| E-mail address: | whobehokie@hotmail.com |
| Country: | USA |
| Comment or story: | I'm a 26 year old male i was in a car accident in may 2005 and had to get a colostomy which actually was one of the least of my problems. But i had no clue what it was when i woke up and wanted to know why that was coming out of it. But as time went on i learned a lot about it and was a little worried how i would act after going home and out in public with it what people would think. At first we thought it was able to be fixed well it has been four years now and its not able to be fixed. I have learned to deal with it i have some problems with it from time to time but nothing that you cant deal with. There is still a lot of people out there that still have no clue what one is and i wish i could educate them about them because you will never know when you will need to know about one. But people saying that they are not able to work or to be active with one is a false statement. I work as a CNA and in school to be a rn it is not a handicap at all. It does take some getting used to and finding what product works best for your body. But you are going to have times that it leaks or even it comes off and don't get me wrong it can be embarrassing but that is just part of it i guess. But it don't stop you from being who you was before in anyway what so ever. You are going to have pains from it from time to time but nothing overwhelming or that wont go away with the help of a good doctor. But thank you all for listening to me and part or my story i just hope it can help at least one person to realize that they are the same person they was before they got "there bag" it doesn't make you no less or a person its not a handicap in a way it makes you a better person because you can maybe educate someone who gets one and share you story with them. Thanks Again so much for listeing to my story. God Bless and have a blessed day. |
| Your name: | deb |
| E-mail address: | dllwoman@bellsouth.net |
| Country: | USA |
| Comment or story: | hi i had colon cancer 2006, I'm still living with the bag on and they said they can reverse the bag but still waiting have to lose weight I'm trying, i was in the hospital 3 weeks ago didn't know you can have a blockage i have 2 hernias 1 in belly button the other by the stoma I'm scared to death. I've been threw chemo and pills no i didn't lose my hair i was surprised. my story is long of what I've been threw, all most died i just cant believe what I've been threw. i would like to make a friend someone to talk to, i get very depressed I don't change my bag my husband does, I'm scared to look at it. yes I'm a big baby. |
| Your name: | Liliana Hernandez |
| E-mail address: | lillybaby53@yahoo.com |
| Country: | USA |
| Comment or story: | Hi My Name Is Liliana Hernandez I lived in San Bernardino All My Life. I will Like for my heath to get better I hate to live like this. I will like to have fun with my family. there is day that I don't feel good. like today. I just don't wont people around me I will like for them to go away that is way I will like to get better. |
| Your name: | Liliana Hernandez |
| E-mail address: | lillybaby53@yahoo.com |
| Country: | USA |
| Comment or story: | Hi My Name is Liliana Hernandez And I am from San Bernardino Ca I lived here all my life. This is the story about me of what happen to me. I had went to the Doctor's to go and see him about a pain that I was having in my stomach this Doctor was just naming thing coming from his mind and i did not even have that. he did not wont to do further tests so I was fight ins sickness for a long time. this doctor should not be one at all. |
| Your name: | Matthew Legg |
| E-mail address: | leggman102@msn.com |
| Country: | USA |
| Comment or story: | My son was born 8/6/08. He was born with no anus, caudal regression, prune belly syndrome, one kidney, neurogenic bladder. He had a colostomy placed at 18 hours of age. He did great! We had the pull through surgery at the end of February and that went great too. We just had the colostomy reversal surgery and it went well except that his intestines have been bloated for over a week and the doctors aren't sure why. He is pooping and he is only a little uncomfortable nso they are going to do an upper GI Monday to see if there is motility in his intestines. |
| Your name: | Liliana |
| E-mail address: | Lillybaby53@yahoo.com |
| Country: | USA |
| Comment or story: | Hello everybody I am a 25 year old mother of 2 little boys ages 3 and 1. About a month and a half ago I under went unexpected major surgery due to medical neglect. I ended up with a colostomy, reversible in the future I HOPE. This experience has been very difficult for me to cope with and understand. Their are symptoms that I wish I could understand so I am glad I found this site and hope to gain some knowledge from people who are going through the same situation that I find myself in. I feel so depressed can I live a normal life? I have a hard time keeping the patches in place is their any tips to applying them? Well thanks I needed this. |
| Your name: | Donna Baughman |
| E-mail address: | JamasPM@AOL.com |
| Country: | USA |
| Comment or story: | I visited England in 1973. I was happy and healthy. I can remember a
horse-drawn carriage carrying milk with the cream on top that I bought
everyday. We didn't have a lot of money so I could tell you what we ate.
We were there three months and traveled about two weeks and returned
home. I lot 40 pounds in one month after starting to see signs. Then, you were nuts and needed rest. That was about all the science involved. I have had an illeostomy 34 years with great success. I have had two children and am still relatively healthy -- except for being overweight. I have been married 30 years and really don't think much about the surgery, except to change the appliance. |
| Your name: | Elinor Irene Carr |
| E-mail address: | pjadegolde@aol.com |
| Country: | Scotland |
| Comment or story: | had colostomy December 31 2007 due to peritonitis and had complications and nearly died as infection spread through my system. was going to have it reversed but as i have always been constipated it is better if i keep colostomy. I am happy with my stoma and it doesnt bother me living with it, once you get bag that fits well it is easy to live with |
| Your name: | Paul Foley |
| E-mail address: | clearway@live.com |
| Country: | Canada |
| Comment or story: | Does anyone know how many colostomies are done in the USA? I have a device that reduces bathroom time, sanitation and order. thank you Paul Foley |
| Your name: | Roshanali |
| E-mail address: | chotupk@gmail.com |
| Country: | Pakistan |
| Comment or story: | I have problems here as I do not get the supplies and when I am abroad I get them, I want to know as how long one can keep (store) colostomy bags unused? |
| Your name: | Peta |
| E-mail address: | peta.denmeade@gmail.com.au |
| Country: | Australia |
| Comment or story: | Hi, My name is Peta and I was diagnosed with Crohn's disease when I was 16. I spent a lot of time in and out of hospital over about 12 months and at the age of 17 I had a total colectomy and now have an ileostomy. I have been doing a bit of research about intestinal transplants but there isnt much to go on here in Australia. I am now 23 and would love to be rid of my bag. Does anyone know if its possible to do a reversal in my case? Or does anyone know a surgeon i can contact? I am not worried about cost or anything like that. I will find the money one way or the other if i have to i just want to know if its possible. Or if i am simply chasing a lost dream. |
| Your name: | Janice |
| E-mail address: | janice_fx@yahoo.com |
| Country: | USA |
| Comment or story: | In Oct of 2008 I had my whole large intestine removed and was given a bag until I healed for the next surgery. I had many problems with the pouch not sticking to my skin correctly. The pouch would leak and it started to burn my skin. I had my reversal surgery seven weeks later in Dec. 08 and still not right. I have diarrhea, hemorrhoids, bleeding, burning, and gas. I don't know what to eat as everything does not work. I've been back to the doctors but no one wants to help. I've tried most products on the market to help with the skin burning around the rectum. I can deal with the diarrhea and the hemorroids, but the gas and the burning are something else. I've been told to eat chicken and pasta. I'm having a CT scan to determine if anything else is wrong. I do not recommend this surgery at all as I've had nothing but trouble. I had familia polyposis disease with a very strong history of colon cancer on both sides of my family. I had three opinions for this surgery. No one said how bad it was. |
| Your name: | Richard |
| E-mail address: | towncrierone@yahoo.com |
| Country: | USA |
| Comment or story: | I lost a friend a few years back who had the surgery. When I became her primary health care provider I had to deal with the bags (pouches?) and found them to be less than satisfactory. I promised her I would develop a product that would return a person's dignity (she lost hers) and I have accomplished that goal...to a point. Why am I here? I need to know the good and bad experiences ostomates are dealing with on a daily basis in regards to the bags they use. Do they break? Do they fall off? Where is your stoma located? (Above or below the waist)? Are you unable to play high school sports because of it? How much volume (of liquid) is released each time (a close estimate will do...1/4 cup, 1/2 cup, etc.) You get the idea. I have a prototype of the new product (appropriately named Dignity) but before I can go into production I need to find out what the daily life of an ostomate is like. I have a colon rectal surgeon waiting to bring in his patients for testing of the product (and he is embarrassed at how little he thought about his patients daily life after surgery) but I want to be ahead of the process and be able to offer a product that works from the first try.(if that' possible...I'm realistic enough to know a change or two will be needed). He set up a meeting last month with 12 ET nurses but they were only concerned with how much they were going to get paid for the meeting. I'm sure some or most of you have a great support group but these nurses were only interested in how much was in it for them. I don't think any of them were low enough on the totem pole to have actually touched a patient in years. At the moment they make enough from the bag suppliers to actually tell me there was nothing wrong with the bags...even in intimate situations. I'm sorry. I may not be a patient myself...but that can't possibly be true? Can it? I will design this product even if it is never used...but I sure could use some help. Thank you and I apologize for writing a novel. |
| Your name: | M. A. Saeger |
| E-mail address: | mreichard7@msn.com |
| Country: | USA |
| Comment or story: | In August 2008 I had AAA repair surgery. Complications made it necessary to have a colostomy the following day. I spent 12 days in ICU, total 31 days in hospital, & rehab. Then, had to stay @ daughter's house for 2 months for additional rehab, 3Xs daily wound changes, and "getting to know my ostomy". It is an unfortunate situation, but one I've been dealt, so I deal w/it. Rather me than my children or grandchildren, for sure! I would like to find an ostomy, or colostomy support group; have searched but cannot find one in my area (NE PA). I miss my former "energy" and hope it will return. |
| Your name: | Michelle |
| E-mail address: | rmf0430@optonline.net |
| Country: | USA |
| Comment or story: | I am a 37 year old female. I had to have emergency surgery October 1st 2008. Due to Div. I had my reversal done on Feb 3rd 2009. My first surgery I wound up back in the hospital due to an infection. Then a reaction and cramping due to medication. A nightmare!! Luckily I had the best doctor in the world. My reversal was a walk in the park compared to the first operation. I was home in 5 days. I didn't even finish my pain meds. That's how great I felt. To anyone who is having problems with proper fittings. If your insurance covers it try to get an ostomy nurse to come to you house. They will fit you correctly and support you with any questions you may have. Plus a 24 hour nurse on call. I would not have made it through without them. I was lucky to have them for the first 2 months everyday! Only because I had an open wound due to the infection that they needed to care for. Otherwise they would have come 2/3 times a week which would have been great as well. Thankfully I was young and in good health otherwise so I healed quick. Its not easy as we all know. But it certainly makes us stronger! Love to all and best of luck!! I am not a pro at this but I would love any emails from you guys if you have any questions or if you want to vent or talk! |
| Your name: | gaby |
| E-mail address: | sosag70@yahoo.com |
| Country: | usa |
| Comment or story: | My son was born with no anus and he has had a colostomy since 11/08/09 and for me it has been very hard because I don't know if it hurts to have a colostomy or if it bothers him in any way and i would really like to know |
| Your name: | Dottie Lane |
| E-mail address: | dotmarv@sbcglobal.net |
| 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. Thank you. |
| Your name: | George |
| E-mail address: | georgebradbury@hotmail.com |
| Country: | England/world |
| Comment or story: | When the doctor told me I had bowel cancer, I was devastated, but only for that day. I lay awake, alone, all that night, but, with the rising of the sun, and the start of the new day, I resolved not to let it get me down. Its bad enough having cancer, without the fear and sadness that often accompanies it. So, while recovering, I applied to study for a degree at university, which I achieved and now use in a new career. I've been lucky, its been 5 years since the operation and, although I know the damn thing might still come back and kill me, I know I've used the experience to my advantage, as much as is possible. Sure, I'd rather it hadn't happened, but it did and that, I cannot change, so I must make the best of it. |
| Your name: | Janice Joyce |
| E-mail address: | jancie55@yahoo.ca |
| Country: | Canada |
| Comment or story: | Hi. I've had an ostomy for the last 10 years. In 1999, my bowel perforated and they performed a colostomy. In 2002, they were going to reverse it and instead I ended up having the colon removed and I now have a permanent ileostomy. In November of 2008, they removed my rectum so that's a done deal. There are very few people around here, my age, with ostomies so its very difficult to talk it over with anyone. Would love to hear from any of you. |
| Your name: | Jim Pickrell |
| E-mail address: | clownmanaz@yahoo.com |
| Country: | USA |
| Comment or story: | Well I have a reversible colostomy on my left side which is rather high on my left side. I developed diverticulitis a week before last Thanksgiving and ended up in the VA emergency room. Turns out I was sick for over a week with a perforated colon. The doctors said that I almost did not make it and I am lucky to still be alive. After 11 weeks in the hospital I have now been home for 2 weeks. They were unable to close my wound from belly button to pubic bone and they had to sew in mesh and a skin graft that looks like half a foot ball. They say it has to heal from the inside out and may take a year or so. I was told that my colostomy would not hurt but it does around the stoma and the cramps I suffer from before I pass the stool is painful too. I was wondering if this is common? I don't like having this bag on me but it is better than the alternative. I was told that it is reversible and it should be done in about 10 months. I was wondering what I am in store for, how long will I be in the hospital, and how long I will have to be in bed rest before I can go back to work. I have not been able to find much information on the internet and would appreciate any informed reply's. Thanks for listening I am so depressed by the whole thing and very frightened at the same time. |
| Your name: | Betty |
| E-mail address: | betlizt@gmail.com |
| Country: | U.S.A |
| Comment or story: | I am an 81 yr. old woman. I had a colostomy in 2004 and have been told it is not reversible and I really would not want to go thru anymore surgery at this time in my life. I am managing with the bag okay but don't feel comfortable about going among people. No matter what I do I still feel I have an odor. I have a leakage of mucus from my rectum and that seems to have an odor also. I would like to have a penpal who will exchange messages with me. My husband passed away in 2007 and my computer is my contact with the outside world. I would prefer to hear from someone who has a colostomy also so we can exchange information. |
| Your name: | Kate |
| E-mail address: | katespcd@aol.co.uk |
| Country: | England |
| Comment or story: | Hi there, I had a colostomy last august after my gynae doctor perforated my bowel whilst i was having what should have been a simple operation. They didnt realise until 9 days later by which time i had peritonitis and nearly died and ended up in intensive care,(even though i kept telling them i was in immense pain) They just said i had wind. I was in hospital for 5 wks and really only got better after i had a blood transfusion. I have had a terrible time since as im only 36 and led a really active life. I have just had a reversal 2 wks ago and am in more pain than ever. I keep getting a really bad burning pain in my stomach around the stoma site when i walk. I cant do anything. Has anyone out there had the same and if so how long did it last? Also what is it? Docs don't seem to know. Look forward to hearing from you.. |
Monday, March 2nd 2009 - 12:39:50 PM
| Your name: | Rebecca Jackson |
| E-mail address: | dtray76@yahoo.com |
| Country: | USA |
| Comment or story: | My 2 year old daughter was born with cloacal anomoaly. we are now being told that a reversal of her colostomy will not be possible due to not having enough pelvic support! We believe that somewhere out there is a doctor that can give us a hope. I've heard it can be done and it could mean following a bowel program!! I guess what I need is some good advise from those who know best. 1) Do I push the issue? 2) Leave well enough alone? Or 3) Allow her to grow up and decide for herself??? |
Sunday, March 1st 2009 - 03:37:26 AM
| Your name: | Rita West |
| E-mail address: | PepeLa3@aol.com |
| Country: | United States |
| Comment or story: | I had colostomy surgery over a year ago and have not had it reversed yet. Does anyone know if there is a time limit on getting it reversed? The timing wasn't right and I am just now getting my weight close to normal. I don't remember the doctor saying anything about a time limit except it couldn't be done before my weight and strength were normal again. Thank you for any information you can give me. |
Tuesday, February 24th 2009 - 10:01:19 AM
| Your name: | pault |
| E-mail address: | pault_2006@yahoo.com |
| Country: | USA |
| Comment or story: | ive read so many stories that resembled my own...i had diverticulitis....had the emergency surgery....woke up with a long scar from my belly button down and a colostomy...spent a week in the hospital and eight weeks out of work...thought my life was over but then realized the alternative would of been much worse....doctor said my colostomy was reversible...wore the bag for seven plus months to allow my bowel to fully heal...i was fully able to deal with the temporary bag...had the reversal and that day couldnt come fast enough...after the reverse surgery i spent four days in the hospital recovering...its been over four weeks now sinse my reversal...i feel great...bowel movements are normal...still some slight discomfort because sometimes it feels like the colostomy is still there...its like with the first surgery...in the beginning it felt like i was going to have a bowel movement like normal...but i knew it wasnt going to come out that end...lol...i do understand that some have problems with reverse surgery...depends on the individual i guess...i was fortunate to have a good esperienced doctor...i didnt have a choice in the beginning...but the same doctor did both my surgerys....and im feeling fine now....would i recommend a reversal???...i surely would....that bag was a pain in the ***....well i should say a pain in my side... |
| Your name: | Diana |
| E-mail address: | sissylil@aol.com |
| Country: | USA |
| Comment or story: | I had to have a colostomy in Nov. 08. Due to laprascopic surgery gone bad. I had an ovary removed and my bowel was cut during surgery. I was in the CCU unit for 9 days so over all a 2 week stay. It has been a hard road and is not over yet. I will be having a reversal in acouple of weeks, I am scared because I know there will be pain and it will take time to heal. And I know there are things that can go wrong. But I keep my faith and find my strength through prayer. I know it will not be easy, but what in life is. I always tell myself I can not change what has happened. For this is my journey and it has been put in my path, so all I can do is accept it. To all who have a hard time and are depressed I will pray for you. Keep your head high and always let your feeling be heard for there are people who will listen and can relate and understand. |
| Your name: | Jo-Anne |
| E-mail address: | jdefrenza@sympatico.ca |
| Country: | Canada |
| Comment or story: | Hi, I have had a colostomy for one year and 2 weeks ago had a
reversal. I am looking for someone that has had a reversal, as I do have
some questions I would like to ask. I understand that everyone is
different, but maybe it would help me out. If there is anyone out there
that could email me back, I would super appreciate it. Thanks very much, Jo-Anne |
| Your name: | Bobbie |
| E-mail address: | ponurse2@aol.com |
| Country: | Illinois, USA |
| Comment or story: | I am 58 and have my second colostomy. It is possible in time to have
a reversal. I, however, just do not want any more suregry for now. I was
in and out of surgery all of 2008. My colostomy was due to a post op
infection from a hemmoroidectomy. Infection, fistula with drainage, more
infection and now constant UTI's as well. I would like hearing from gays/lesbians and how they handle relationships, and their partners ,dealing with the bag and all the issues that come with it. |
| Your name: | Ida |
| E-mail address: | ida_hub@yahoo.com |
| Country: | USA |
| Comment or story: | I am a 39 year old paraplegic. I am married with a 9 year old daughter. I work 4 days a week and keep a busy schedule with my daughter. My problems began about 4 years ago with multiple calls to the bathroom which has left me missing a lot of work. I have been unable to find a doctor with any diagnosis and 2 years ago insisted on the colostomy to preserve what value of daily activities I could maintain. I had a colonoscopy and all was clear. Fortunately, I have had a supportive husband, family, friends, and job that has allowed me to deal with it for now while I continue to search for a doctor that can put a name on my condition. Glad to hear from anyone who needs to talk and thanks to all for listening! |
| Your name: | Jason |
| E-mail address: | klimpj@hotmail.com |
| Country: | USA |
| Comment or story: | First I want to say sorry to everyone for what they are going through, getting a colostomy is difficult weather it is reversed or not. I was born with Hirschsprung's disease so at birth I had a colostomy, lucky for me it was reversed. Last year the doctors said I had a bowel obstruction, cut me open and found they were wrong, my large bowel was dilated. So they gave me a colostomy again. They said it could be reversed, but a year later they think I should keep it. So I am trying to find the best hospital or doctor to see about the reversal. I do live north of Seattle but will travel the country if I have to. I would appreciate everyone's opinion, thank you. |
| Your name: | Joe |
| E-mail address: | joebevan@aol.com |
| Country: | USA |
| Comment or story: | In Sept 08 had a ruptured Colon and had to get emergency colostomy. Was very sick due to infection from the leakage. After 13 days in the hospital I went home. Was told home health would help with learning about my ostomy. I found that the home health folks were very little help with my Ostomy. I called a supply company and had 6 different types of barriers and bags sent. I found a convex barrier and disposable bag to work best for me. On Dec 4 2008 I had a reversal done (just as I felt great) felt kind of dumb going into the hospital feeling well, knowing I would feel awful in a few hours. I think the reversal was more painful than the colostomy. However I am 5 weeks out from surgery now (I thought I would never feel good again) and I am starting to feel normal and my bowel functions have returned to almost normal. I find that I have less "storage" capacity and go a bit more often. But I was blessed with a great MD and a positive outcome. |
| Your name: | Kelly |
| E-mail address: | Kelly.jo@hotmail.co.uk |
| Country: | England |
| Comment or story: | I had a mis-carraige in July 2007 at 14 weeks and went into hospital for an erpc. Went back in Sept 2007 and was told I needed another erpc as they had left some products behind. Woke to find that they had perforated my uterus, my rectum and my bowel and they had to open me up to do repairs. 10 days later was taken for an emergency laparotomy where they discovered the repair hadn't held and I had a huge abscess. A transverse loop colostomy was formed to repair and then rest my bowel. In January 2008 I had a reversal and I am now relatively fit and well. Despite my disaster my husband and I are desperate to have a child. My Dr says a pregnancy is not impossible but very high risk. He feels that due to the surgery my bowel is adherant to my uterus and because of my uterus damage I would have to have a c-section. This would mean having to mess with the bowel again and quite frankly im terrified. Has anyone had experience of c-section post colostomy? I would be so grateful for advice or help.. Also if I can answer any questions for people that are earlier on in this process I would be more than happy to help. Many thanks Kelly |
| Your name: | Joanie |
| E-mail address: | jts94@msn.com |
| Country: | USA |
| Comment or story: | I am not writing about myself but instead for a dear friend who just had a colostomy a month ago. Hers is NOT reversible and she is very depressed about it. One of the main reasons is because she makes gas noises without any control of it and will not go out in public unless it is somewhere she won't run into people she knows. My husband said that she will learn how to "time" her eating so the gas noises can be a bit controlled and she can live a more normal life. Anyone know anything about it and if so.....have you found any patterns to your eating and the gas noises??? PLEASE HELP US. |
| Your name: | Donna |
| E-mail address: | buffa801@rcn.com |
| Country: | USA |
| Comment or story: | I notice in my stool there is a chalky substance, would anyone know what that might be from? I tried to do some research on it and no luck. Its just small rounded pieces at times. |
| Your name: | Ronaldo Lora |
| E-mail address: | ronald.s.lora@gmail.com |
| Country: | Philippines |
| Comment or story: | I am Ronaldo Lora from the Philippines. I would just like to say that in spite of the colostomy I had for the last 6 years, life has been kind to me. I recently attended the Asian Ostomy Conference in Japan and met a lot of fellow ostomates and friends. I am bringing the work here back in the Philippines to gather ostomates all over the country and form a network and support group. All is not lost after a colostomy surgery. |
| Your name: | lucy degidon |
| E-mail address: | lucycat1203@yahoo.com |
| Country: | usa |
| Comment or story: | I think that fellow ostomates should be given more helpful tips
about handling colonoscopy's, and their aftermath. I found that
switching to a drainable pouch for the procedure was helpful. Now I'm
trying to regain my normal bowel consistency, after taking whatever
horrible liquid you take for the procedure. Any further tips concerning before and after, would be helpful to me and to others. |
| Your name: | Matt |
| E-mail address: | mp5102@juno.com |
| Country: | USA |
| Comment or story: | Back in 2007, I had surgery for diverticulitis and a temp colostomy. My entire mid section is now crooked by the incision (belly button moved over 2 inches). Does anyone have a photo of their surgical incisions? I just want to know if this is normal or not. I would sure appreciate it. . |
| Your name: | JB |
| E-mail address: | jbateka2004@yahoo.com |
| Country: | USA, PA |
| Comment or story: | I am 60 years old, looking for a single woman with a Colostomy to
shear our life and to help each other in it.
I have a temporary Colostomy on the left side, but skeptical to go for
reversal after searching for answers and reading the entire problem you
are having. Advises and suggestions. None of you can control your bowel
movements because… the flora in your stomachs was severely violated due
to the surgery and antibiotics, food and alcohol abuse. Problems, toxic
components, bad bacteria’s and warms in our system. Solution,
detoxication, system cleaning and restoration of your original flora in
the stomach. The edible CLAY is the best product in the World that can
detoxicate and clean your system in 4-15 days without doing any harm to
your body. Organic farm and yogurt from organic milk can restore your
flora in the stomach. Control products with sugar, alcohol, fresh
veggies and fruits. Milk is bad for us. Learn to eat differently.
Portion control - we are not healthy pigs anymore. Dinner, to eat
separately a fresh salad, soup and entry - it is not anymore for us. But
instead, eat it up like this: one fork of salad, one spun of soup and
one fork of entry. You are going to mix it up and that will create an
even mass in your stomach. It will help you a lot to control your bowel
movements. Eat soft fruits and veggies. It means, steam, boil or saute
them up. Example. You can saute the whole salad - it is delicious. But if you have boiled up veggies - save the water with vitamins in it and next morning use it to make an oatmeal. Pill off the apple, shred it up and put one spun of honey if it is sour. Do remember to use larger wholes - it is not a garlic. Keep the communication opened. Good Luck to all of us. JB. |
| Your name: | Lisa Nelson |
| E-mail address: | kent2416@comcast.net |
| Country: | usa |
| Comment or story: | I have a colostomy for a year and a half now. I have had 2 bowel resects from diverticulitis. I am awaiting a reversal surgery but keep getting fluid collections. I am on antibiotics and am wearing a drain tube plus the bag. I am very depressed but work hard everyday to keep positive. I pray everyday to stop getting these infections so I can have my reversal. Any comments or is anybody out there going through this? |
| Your name: | Susan |
| E-mail address: | elaine1255@yahoo.com |
| Country: | USA |
| Comment or story: | I had emergency colon surgery on Sept.23, 2008 by a general surgeon...all that was available in my hospital where they had tried treating me with tons of antibiotics for about a week for diverticulitis. I now have a colostomy that the dr. says is reversable. I have an appt. with a colorectal surgeon this month to get his opinion on when to do the reversal. I have had one nightmare after the other trying to wear the wafer and bag. I have serverely sensitive skin and the thing just won't stick. I'm now wearing a baby diaper taped over my stoma. I was reading on line about reversal surgeries and saw where they may can be done laproscopically. Anyone had that done. What ever type of reversal you have had, please let me know how it worked out for you. I'm hoping the general surgeon didn't mess me up so that it can't be reversed. |
| Your name: | nathan |
| E-mail address: | dogsfan_y2k@yahoo.com |
| Country: | USA |
| Comment or story: | I had a bad issue about two years with a bad doctor when I got a scope and he tore part of my colon I had to get a colostomy emergency style which really sucked I spent over 8 weeks in the hospital the amount of infection I had blew my gall bladder as well I had to get that removed so I have a coloctomy with no gall bladder so it really sucks but now after problem after problem I can get my reversal this coming Tuesday I am scared but the good news is the same Dr. who did the first colostomy will do the reversal I have teh fears of will I go out in public and eat ever again if anyone as recently had a reversal please let me know how it went and how you are I figure it can't be as bad as having a bag I can't ski ,hunt,swim,ride rises,or play with my kids as much as I would like Thank God I can have a reversal for those who can't life will not be that bad I promise and you will adjust never loose hope and keep ypu family and friends close to you and DO NOT GET OR FEEL ASHAMED YOU DID CAUSE THIS TO HAPPEN!!!!!!!!!!!! |
| Your name: | Brandi |
| E-mail address: | chickpea101@hotmail.com |
| Country: | NovaScotia |
| Comment or story: | Iam 33 years old.I went in the hospital in June to have a cyst removed from my ovaries..Doc cut my bowel..thought he repaired it 4 days later I had surgery again and ended up with a colostomy!What a nightmare at first I was scared and very annoyed,after about a month I was feeling great and looking forward to the reversal..This I had one week ago..Well now I feel like crap:(( Have a hard time with food,cramps,and am depressed all over again..please tell me it will get better..everyone said the reversal would be a piece of cake!! |
| Your name: | Donna |
| E-mail address: | buffa801@rcn.com |
| Country: | USA |
| Comment or story: | Just a little hint for all you ostomates for disposal of your ostomy things after use. I purchased a diaper genie to throw away soiled things. Works great till you empty your regular garbage. |
| Your name: | Virginia |
| E-mail address: | gdimola@charter.net |
| Country: | USA |
| Comment or story: | I had an emergency colonoscopy preformed on July 24, 2008. Prior to surgery, they tried to treat me with massive doses of antibiotics, but it went from bad to worse. Emergency surgery was preformed ,one week after admittance, and I spent 4 days in ICU and another 10 days in the hospital. The recovery was a slow process both physicallly and mentally, but as with most challanges we adjust over time. Now that I am scheduled for the reveral December 1st, I decided to do some research and came across this site. Some of the stories seem somewhat frightening to me and I would like to hear about some positive outcomes for reversals. It was my understanding that the second surgery is not as difficult in terms of recovery, but those are not the impressions I am gleaning from this site. Any information on recovery would be emensely helpful. Thanks so much |
| Your name: | Virginia |
| E-mail address: | gdimola@charter.net |
| Country: | USA |
| Comment or story: | I had an emergency colonoscopy preformed on July 24, 2008. Prior to surgery, they tried to treat me with massive doses of antibiotics, but it went from bad to worse. Emergency surgery was preformed ,one week after admittance, and I spent 4 days in ICU and another 10 days in the hospital. The recovery was a slow process both physicallly and mentally, but as with most challanges we adjust over time. Now that I am scheduled for the reveral December 1st, I decided to do some research and came across this site. Some of the stories seem somewhat frightening to me and I would like to hear about some positive outcomes for reversals. It was my understanding that the second surgery is not as difficult in terms of recovery, but those are not the impressions I am gleaning from this site. Any information on recovery would be emensely helpful. Thanks so much |
| Your name: | T Hopkins |
| E-mail address: | family84@yahoo.com |
| Country: | USA |
| Comment or story: | My grandson has had an ileostomy since he was 8 days old. He just turned one year old and his mother is having a very hard time with bag changes. Please please please help if anyone has any ideas. I cannot always be around to help and of course, the leaks occur when she is home alone with him. He is so squirmy and active that it is virtually impossible to do this by herself. |
| Your name: | stephen c brown |
| E-mail address: | sbrownjr@tampabay.rr.com |
| Country: | usa |
| Comment or story: | Hi. I had my colostomy reversed one week ago. The original reason for it was diverticulitis(sp). The procedure went smoothly according to my surgeon. I was in the hospital for only 6 days and am home now. While I am extremely happy and relieved to have this behind me, I just wanted to warn everyone who will have the reversal that they need to make sure that they get plenty of high powered pain killers for the time immediately following the reversal. Of course, while in the hospital, they kept the pain controlled, but after the intravenous(sp) drugs wore off, the pain is excrutiating. Today is exactly 7 days after surgery, and the intensity of the pain is somewhat overwhelming. I look forward to the pain retreating as I recuperate, and will be glad when this entire ordeal is a memory. Hang in there, everybody, and good luck. I will post again in a week or so and tell you how progress is going. Thanks, Steve Brown |
| Your name: | julia |
| E-mail address: | j-ma@cox.net |
| Country: | usa |
| Comment or story: | I was dionogsed with colonrectal cancer in Dec 03. Thought my life
was over , but it is now Oct 08 and I'm donig just fine. I have a
permanent colostomy ( what a life change) . but the LIFE is what it's
all about. I'm almost 5 years clean and doing very well. It took a few
weeks to address my stoma without help, but I came to grips with the
fact that I had to learn to LIVE with the change in my life, and I'm
ever so greatful to have the chance to be with my family and friends. My
attitude , is so good now , so any one , out there who is facing this in their life, talk to me and I will try to help you though . |
| Your name: | Carol |
| E-mail address: | cannanni@aol.com |
| Country: | USA |
| Comment or story: | I had emergency surgery in February due to a punctured colon caused
by severe diverticulitis. The pain was terrible, my abdomen was greatly
distended, and I woke up with a temporary colostomy. I had severe
distress, depression and discomfort due to the colostomy, but it has
made me a stronger person. I have started an exercise program, and have gotten into tremendous shape, my eating habits have gotten very healthy, and I am getting ready to have reversal surgery in about 2 weeks. I am looking forward to having my life back again. I will keep all of you posted. |
| Your name: | steve brown |
| E-mail address: | sbrownjr@tampabay.rr.com |
| Country: | usa |
| Comment or story: | I am actually in the hospital on Thur. after having the reversal done on Mon. Wish I'd have found you guys and knew somewhat what to expect prior to this surprise. Dr. says surgey went great, but I feel far worse now than at any time since original surgery. They won't let me leave until I have a BM, and won't let me eat until I have a BM. Have had PERFECT pain management, but haven't slept or had food (besides anesthesia) in 5 days. Would advise everybody to get good understanding of Dr.'s expectations, as I feel far worse than I was to believe I would. Feel like leaving AMA and get a cheeseburger on the way home and forget this whole nightmare ever started on 4th ofr July. It is Oct.16th. Good luck to all. |
| Your name: | marque |
| E-mail address: | marqueharris@hotmail.co.uk |
| Country: | england |
| Comment or story: | can any body help me? iv just had a reversal and was more or less rushed out. i am constantly leaking mucus which stinks and cant pass anything. all my gp says is it will pass |
| Your name: | Anita |
| E-mail address: | anitaeye83@optonline.net |
| Country: | USA |
| Comment or story: | Hi my name is Anita and I am 50 years old. I have two boys, 16 and 18. My husband passed away on February 7, 2008 from pancreatic cancer. I was admitted to the hospital on February 11, 2008 because I was having a severe flare up with my ulcerative colitis. I had been bleeding for awhile before that but I ignored it to take care of my husband. After a two week stay I went home and was on every medication you can think of but nothing worked. On August 5, 2008 I fainted in my bathroom and started bleeding uncontrollaby and had emergency surgery that day. They left two feet of colon removed the rest and I had the external pouch now. The surgeon told me that I would be able to have the J-Pouch surgery and I am scheduled for that on November 4, 2008. I am taking iron infusions now but I am not on any medications for the ulcerative colitis. I did alot of research on the JPouch and I didn't like what I was reading but the surgeon said it is the best thing for me to have. I am a nervous wreck about it. I heard the recovery is 3-6 months, going to the bathroom 9-12 times a day and leakage. With my pouch now I eat everything, go anywhere and I am becoming used to it. But I don't know if I want to have it for the rest of my life. The surgeon did say that he was going to leave the stoma in until they can make sure I am recovery healthy from the J-Pouch. Also I read on this site that people say they are having a reversal done, does that mean the JPouch or is there a different kind of reversal. My doctor never mentioned reversal to me just JPouch surgery. Any suggestions or comments from anyone would be appreciated. |
| Your name: | Edward |
| E-mail address: | e.adams364@gmail.com |
| Country: | usa |
| Comment or story: | Hi had ulcerative colitas for 2 yrs , took the meds doctors gave was bleeding from the anus alot my blood count was up and down got tired of endless tripps to the er, finally had operation i went in weighting 175lbs lost 35 lbs in one month sipping water ice chips and broth , when home and my stoma stop working got sick was in hosp. for another week... 2 yrs later had stoma hernia which they move from the right to the left my anus was still bleeding doc decided it be best to close up. well so far it ok feel better have some issues with rashes had a tough time getting use to it now doing much better , like to hear from any one im 53 thanks and best of luck to people out there , |
| Your name: | Stella Kenrick |
| E-mail address: | stellakenrick@hotmail.com |
| Country: | England |
| Comment or story: | Hi all, I've had my permanent colostomy for 15 years now. I had it done after a hysterectomy went wrong and septacaemia damaged my bowel. I get pelvic abscesses for a past-time and have had two unsuccessful attempts to have tumours on my ovaries removed. There is so much scarring that I just ended up with bowel resections and a bowel that "looks like a tea bag". Like Sandy I have periodic problems with a yellowish brown unpleasant discharge from rectum and vagina. The consultants just hope that it, and I will go away as they don't know what to do with me! I can only assume that my bowel is leaking and I have a fistula. Apart from that I'm 54 and life is pretty good! |
| Your name: | Paula |
| E-mail address: | princesstoadstool99@yahoo.com |
| Country: | USA |
| Comment or story: | I had my reversal done On July 14 after having the colostomy (due to diverticulitis) for 101 days. I had read all the horror stories of reversals and was terrified,but was wiling to risk it to be rid of the bag. I had a laproscopic procedure. I spent 4 days in the hospital, was up and around the afternoon of the surgery. Within 10 days I was just about back to normal. I have no issues with any foods or diarrhea, which I had seen other people had problems with. The only problems I have had are occasional soreness in the area where they did the resection (my doctor says that will go away in time) and twice I have felt like my intestines were in the wrong place. For about 3 days it felt like my insides were trying to work themselves back into the correct place--I had that after the original surgery, too. I would definitely recommend the reversal if you can do it laproscopically. |
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