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Click here to post your Ileostomy Story
| Your name: | Cheryl |
| E-mail address: | cherww@surry.net |
| Country: | USA |
| Comment or story: | I have read a lot of your comments about your ostomies so wanted to update mine. I have had my ileostomy for 25 years this past February. I was 27 when I had the surgery. It really changed my life but I am thankful because it saved my life. My mom died of colon cancer when I was 17. After lots of tests, probing, x-rays and procedures, they found I had the same thing that caused her cancer. It is FAP and is herdity. For 10 years I had several surgeries and procedures before I arrived with 'Sam' (my stoma). I have had a lot of problems, surgeries, trips to the ER and have to deal with dehydration all the time but I am doing well. I am alive! I just want everyone to know that having an ostomy does NOT stop your life. Sure, at times it slows us down but I try to enjoy each and every day the Lord gives me and just take one day at a time. I am now doing things that I never thought I could. I have learned to ride a motorcycle and now own my own bike. Yes I have problems with my ostomy, as we all do, but I don't let it control me, I control it. If anyone would like to talk, please feel free to email me. I love helping anyone I can. I have found that we learn a lot more from each other than we can from doctors, nurses or even ET's. They don't live with these 'bags' hanging on their abdomens on a day to day basis like we do. We are here to support each other. I will answer all emails. Take care and God bless. |
| Your name: | Eyespees |
| E-mail address: | eyespees@aol.com |
| Country: | USA |
| Comment or story: | On May 21, 2010 I got an ileostomy that is irreversible. I had a j-pouch for 11 years and it wasn't working out for me but I swore I would never live with an outside bag. Well the outside bag is what is keeping me alive. My surgery was very complex because I waited so long and had plenty of scar tissue. After 3 weeks in a hospital I am home with a bag and a drain, for a large abscess that developed. I am hoping to get well soon so I can go back to teaching in September. Yes, this is a life changing event so I try to take it one day at a time and keep my family and friends close. Yesterday was the first day I was very upset but today is a new day. Together we do what we can't do alone. |
| Your name: | Debra Rothermel |
| E-mail address: | trotherm@aol.com |
| Country: | New Mexico, USA |
| Comment or story: | I honestly feel that treating my ileostomy as a friend, giving it a name, and caring for it like a birth child helped me recover as much as having a completely accepting spouse. What is that Serenity prayer?... "accept things I cannot change..." |
| Your name: | Yogesh |
| E-mail address: | ythakkar2@gmail.com |
| Country: | USA |
| Comment or story: | My daughter had a Ileostomy reversal done on last Friday. We went home on Monday (Memorial day)& Tuesday night she started having abdominal pain. Called Dr. and told us that if pain increase, rush to hospital. Next we got in ER & after CT scan, it was conclude that she has the partial bowl obstruction because it's swollen inside. She control the bowl and it's coming out regularly and normal. Question- Is this common after the surgery and how long it will take to heal. We are still in hospital and we can't figure out why she is not improving even 15 to 20 % with all medication and NPO. (resting the Bowl) Please help us. She is 19 and had a UC for 4 years. Her first surgery was last year & same Dr. operated her with J-Pouch and Ileostomy bag. |
| Your name: | Jessica Hill |
| E-mail address: | reeceheathbartjessica@yahoo.com |
| Country: | United States |
| Comment or story: | I have had gut issues since I was 13 and diagnosed with familial adenomatous polyposis. I had a subtotal colectomy with ileoanal anastamosis at that time. Last year, I had an area that was having carcinogenic changes. So, now I have an ileostomy. I actually find that my gut is more comfortable now that I do not have my J-pouch. I had lots of problems with stenosis and pouchitis with my j-pouch. I have had some issues with the ostomy, but I have had great success with custom made appliances. |
| Your name: | Louise |
| E-mail address: | lscauzillo@gmail.com |
| Country: | USA |
| Comment or story: | I have been reading all your stories and I certainly can relate to many of them. For the young people who have had ileostomies, I want to share my story. I had mine when I was 19 years old. I was an avid water skier and sun worshipper. I thought everyone would know I had a bag on my stomach and I wouldn't have the same life. I have skied, I swim, I have 3 wonderful kids. I have lived a full life with a bag on my stomach for 40 years now! It is as much a part of me as my eyes or ears. I thank God every day for this bag because I am alive to enjoy my husband, kids and grandkids. Life can be tough, but it is our best option! |
| Your name: | Serge |
| E-mail address: | serge.dunn@yahoo.ca |
| Country: | Canada |
| Comment or story: | Going for Ileostomy Reversal on 28May - Here is my story. Oct 2009, I came home after work and was not feeling well. I had a birthday party the night prior and had a bit to eat/drink so I was thinking it was something to do with that night. i kept on vomoting for days.. I went to the hospital where they give me some fluids and sent me back home...well 2 days later, I could not get out of bed so they rushed me to ER and found out that my appendix had bursted. I woke up from that surgery and 3 days later was back in surgery where they had to put a Ileostomy since i had a leak and they had to tie up something and let it heal before the reach me again. So...I was reading a lot of post about complications after the surgery. I don't know if my case will be easier or the same? Also, they have to cut into my abdominal wall again since I have a hernia ..Also, my intestines was infected and it had to heal on it's own. I have a big scar since it was left open for months and months.. It still is not healed. I may have to go back to the VAC healing machine. I will be off work for a while, I assume 3 months. I am athletic and started to run again, blading, biking and light weights. I still am in good shape,33yo. I hope to be back to normal soon. I am bit nervous about the operation but hope it will go well. Sorry if I did typo as I am French and did not do the spell check . I hope all of you are doing well with your ostomy and be able to live a normal life. |
| Your name: | Peter |
| E-mail address: | Balzli757@hotmail.com |
| Country: | USA |
| Comment or story: | I had a ileostomy a few weeks ago after a long battle with
constipation, and my large intestine stopped working completely. Now I
am stuck with this bag, which I can deal with if the pain I have in my
stomach and gut would stop. My stomach seems to empty slow and gives me
tremendous pain. I just want to know if anyone else had this
problem...how long dose the pain stay with you after surgery? I also had
a stroke a year ago so I have other problems but now just trying to live
with this new way of life... a bag Thanks, Pete |
| Your name: | Chris |
| E-mail address: | osiris202@hotmail.com |
| Country: | USA |
| Comment or story: | I am 30 I had my large intestine removed 11 years ago because they thought it was UC which shortly after the surgery turned out to be Crohn's I fought it for about 11 years with meds and unfortunately in Feb 2010 I had to get an ileostomy for the rest of my life. It hasn't been to bad so far. I would enjoy talking to other people with an ileostomy. |
| Your name: | Gerry |
| E-mail address: | grannyhammond@hotmail.com |
| Country: | USA |
| Comment or story: | I've had my ileostomy for about 3 months following surgery for colon
cancer. After I began chemotherapy, leakage problems have become so bad
I am afraid to leave the house. At first the chemo caused severe diarrhea. The liquid drainage would seep beneath the skin barrier and eat through the adhesive causing me to leak everywhere, and causing my skin to become raw and painful. My oncologist tried altering the dosages of my chemo to no avail and finally put me on injections to control the diarrhea. This helped control the diarrhea, but now the consistency of the discharge is constantly changing from watery to solid and everything in between. When it becomes solid, the matter sits on top of the stoma and cannot go anywhere. As more tries to come out, it pushes the stoma down until it pushes it beneath the ring barrier, skin barrier, and any other product I have tried. Then in a matter of minutes, it shoots out the side like a blowout. This situation occurs so quickly, I usually do not have time to get to a restroom in time. It is so embarrassing and humiliating, I am afraid to go out in public. It is even difficult being around family and friends sometimes. I literally feel like I am homebound although I feel physically well and healthy. Emotionally I am a basket case. I tried attending my grandsons' baseballs games twice, and both times, within minutes of arriving, I experienced a "blowout." I have over 4 more months of chemo to go through and do not want to stay home that whole time. I have tried paying close attention to my diet, but so far have not found anything that makes a difference. If you have experienced this situation, I would like to hear from you. Does anyone have any advice? |
| Your name: | Denise |
| E-mail address: | lovedegus@gmail.com |
| Country: | USA -Arizona |
| Comment or story: | Hi my name is Denise I've had my ostomy since 1993 if anyone needs support or someone to talk to I'm here, over my 14yrs of having an ileostomy trust me I've been through a lot but I can tell you my ostomy is the best thing that I could have done i feel normal again, know there are people out there that are in much worse situation than I and I thank god this is all I have. So again if any one would like to e-mail me please do so no question to silly or embarrassing to talk about, all of us ostomates are in the same boat so lets all stay afloat and support each other, thanks an most of all take care of yourselves Denise |
| Your name: | Chris K |
| E-mail address: | osiris202@hotmail.com |
| Country: | USA |
| Comment or story: | i wad diagnosed with with what they thought was UC in 97 and it went downhill from there within 1 month i was having my large intestine removed i had a bag for 4 months then it was removed and everything reconnected. I lived with an ileo-anal pouch till 2010 when my Crohn's disease got so bad i had to get my ileo-anal-pouch removed and now i have an ileostomy for the rest of my live but my spirits are hi : |
| Your name: | KAREN WRIGHT |
| E-mail address: | KARENWRIGHT99@YAHOO.COM |
| Country: | UNITED STATES |
| Comment or story: | I WAS DIAGNOSED WITH COLORECTAL CANCER FEB 18,2009. I HAD 6 WEEKS 5 DAYS A WEEK ORAL CHEMO AND RADIATION. 7 WKS LATER I HAD A COLON RESECTION WITH TEMPORARY ILEOSTOMY. 7 WKS AFTER THAT I HAD ILEOSTOMY TAKE DOWN. THEN 5 MONTHS INTENSE CHEMO. I HAVE TO GO TO THE BATHROOM 10-15 TIMES A DAY WITH SMALL BOWEL MOVEMENTS. I HAVE OCCASIONAL CONSTIPATION. I AM SORRY TO HEAR SOME OF YOU HAVE SUCH TERRIBLE EXPERIENCES. I DID NOT LIKE THE ILEOSTOMY AND I AM VERY GLAD THAT I HAD REVERSAL. I HAD MY SURGERY AT MD ANDERSON. I HAD A CT SCAN FEB 17,2010 AND SO FAR CANCER FREE. GOOD LUCK TO ALL!!!!! |
| Your name: | Nikki |
| E-mail address: | nikki_grant59@yahoo.com |
| Country: | U.S. |
| Comment or story: | Hi I am 50 years old and I had colon cancer in 2008, which led me to have a full ileostomy. I have nothing left below. They took my colon, large intestine, appendix, and sewed my bottom closed. Here it is 2010 and I am still having trouble with accepting this bag hanging from my stomach. I hate looking in the mirror, I don't feel good about myself. People just don't understand how I am supposed to like what I see. I am looking for pen pals who have full ileostomies and who understands what I am going through. Maybe we can help cheer each other up, Looking forward to meeting new friends. |
| Your name: | Colt |
| E-mail address: | halo2182@hotmail.com |
| Country: | USA |
| Comment or story: | I was diagnosed with Crohn's when I was 18 and am 22 right now. I have one heck of a ride but all I can think about is being alive today with friends and family by my side. Symptoms started happening when I was a senior in high school running cross country, and I started to have pains in my hips, joints, muscles and my coach didn't know what was going on, so I kept on running which I knew was a bad idea inside, but I was competitive and didn't want to let down my team. Then it got worse and I started to have bloody stools and the back pains got even worse so I went to doctor and i started meds. Nothing worked for about two years and I just got worse and worse in and out of the hospital. I had to have my illeostomy with the hopes that my large colon would respond to the medication. I started loosing weight derastically and everything I ate was just like water, so I had to have my rectum removed. I am still healing from that surgery which takes a very long time but every day seems to get better for me. At my smallest I was 125 but now I weight almost 155 with intentions of getting bigger, hopefully. I still have back problems because my abdominal muscles are still weak but I have Slowly getting them back into shape. Being in college it is very tough with an ilieostomy, but everyday I thank GOD for being with my every step of the way. As a testimony to the power of the higher power, I'll share what happens when I was on my death bed in the hospital. My father was taking a shower 50 miles away from the hospital, and at the same time I was giving up, a dime dropped in the shower next to him. He rushed to the telephone because he needed to know that I was okay, which I wasn't. At the drop of a dime, he knew I was taken care of by a special someone. Don't give up, hang on, things will get better even when your at your lowest when it seems like it is impossible. |
| Your name: | Nelly |
| E-mail address: | neelmarani@hotmail.co.uk |
| Country: | United Kingdom |
| Comment or story: | I'm a 33 years old woman who was diagnosed with Crohn's disease in 1990.i had a subtotal colectomy and ileostomy, enterocutanous fistula in 2005.further surgery is needed to close the fistula. I'm scared because last time i had complications with my surgery and i end up in ICU. I would like to hear from anyone who has had surgery to close enterocutanous fistula. |
| Your name: | Melody |
| E-mail address: | melodytuan@yahoo.com |
| Country: | Philippines |
| Comment or story: | hello everyone, my daughter has an ileostomy since she was 3 days
old, now she's 1 yr. 8 mos., please help me decide whether to have
permanent ileostomy or to have j pouch? thank you |
| Your name: | Bryan |
| E-mail address: | pointofu@hotmail.com |
| Country: | Ontario, Canada |
| Comment or story: | hey there... im sitting in bed typing this on my phone mostly because I'm extremely depressed about my situation. i was diagnosed with Crohn's - Colitis when i was 17 years old and I attempted to fight it with every drug available. i even was a lab rat for a few drugs coming to the market that actually never ended up even getting passed but nothing ended up working. at the age 20 they got my Crohn's under control but the colitis was through my whole large intestine so i had to get it removed and was given an end ileostomy. im now 23 and on Feb 26th 2010 i went in for my first of two surgeries to get reconnected. i now am stuck with a loop ileostomy and i am having nothing but problems. the pain is tremendous, it seems impossible to keep hydrated and my stoma is so much different then it was before that i find it hard to keep my flange on because of leakage... I've heard of these convex flanges but i was told they are harder to move with because they are stiffer.. is this true? another problem I'm having is with my surgery they created a called a J pouch inside of me and ever since the day of my surgery I keep passing mass amounts of blood clots about 6 times a day through my behind. my hemoglobin isn't changing so the doctors are not worried and they said its to risky to scope me for about another month.... so I'm left bleeding every night when i go to bed and its just getting old.... I used to think getting reconnected was the greatest idea in the world but when I had my end ileostomy i had no problems at all... I guess I'm just hoping that someone might be able to shed a bit of light on this and maybe give me some advice.... sorry for ranting on about all this crap, life could be worse I know, but I'm only 23 and I feel like my whole life has been ripped away from me. |
| Your name: | Greg |
| E-mail address: | gmartin2005@hotmail.com |
| Country: | USA |
| Comment or story: | We were having tremendous problems with leaking until we discovered convex bases, which surround the stoma so much better than flat ones, enhancing efficient emptying into the pouch. There have been virtually no leaks since, and we've gotten our lives back. Good luck to all, and please remember that whatever inconvenience you have to put up with (bags, diet restrictions, etc), it's good just to be alive. |
| Your name: | Stan |
| E-mail address: | toper234@webtv.net |
| Country: | USA |
| Comment or story: | I have had my stoma since 2004 his name is arty am looking for pen pals. |
| Your name: | John Cuomo |
| E-mail address: | jcuomo34@aol.com |
| Country: | New York |
| Comment or story: | i just read the new newsletter on line and want to know what is bismuth subgallate, I am always aware of odor control since I work with the public. I now use Devrom internal deodorant tablets and cover the filter with the little adhesive piece that is in the same box with the pouches, if anyone knows anything else to prevent the odor please write me. thank you |
| Your name: | JoVonna Williams |
| E-mail address: | jpwilliams919@hotmail.com |
| Country: | USA |
| Comment or story: | I am a 30yr woman, had been diagnosed with Megacolon. I had total rectal re-construction, over half my large intestine removed, and had to have an Ileostomy bag in Aug. 09. I had the Ileostomy bag for 3months, it was reversed the day after thanksgiving. I know have been back in the hospital, like 3 times, problems with digesting still and severe pain.. I have changed my diet and monitor closely what I eat. Looking to talk to anyone that shares a similar story, or anybody that can give advice.. God placed me this far, but I seem to be having a harder time now than ever.. Looking forward to hearing from ANYBODY SOON. |
| Your name: | Pat |
| E-mail address: | pat_tobin@bellsouth.net |
| Country: | Mid-South USA |
| Comment or story: | I had U.C. for 20 years. Toward the end even tried research drugs, to no avail. We found out I had an allergic reaction to the drugs. Spring of '07 my GI Doc said "it's coming out, within 6 months. You decide when." My only regret is not having the hair around the future site of the stoma lasered out. June 28 of '07 was surgery. I never realized how much energy I had lost during those 20 years. Now I'm backpacking and camping with my son and hoping to ride the "Get Your Guts In Gear" ride this year!(210 miles in three days!) I still haven't named it yet, but I'm thinking of Helen (as in Mt. St. Helens!) She blows when it's least convenient! |
| Your name: | Elana |
| E-mail address: | russel_7@msn.com |
| Country: | Canada |
| Comment or story: | Hello, I am 36 I've been living with an ileostomy for the past 11 years. I was diagnosed with Crohn's disease when i was 13.all the medications in the world couldn't keep my flare ups away. when I was 24 I had my large bowel removed with the hpoes that would help, but it didn't less than a year later i had my rectum removed and had a ileostomy. I haven't had many troubles with it only one blockage that required a hospital stay. I was married when I had my surgeries although my husband it great with it and thankful that it gave him his wife back sometimes i still get a little depressed about having the ostomy and himm seeing it i am thankful for my life and my two wonderful children. one of them i had before surgery and the other one after just thought I'd share, thanks Elana |
| Your name: | Jerry Sullivan |
| E-mail address: | manatees@earthlink.net |
| Country: | USA |
| Comment or story: | Had my ileostomy since 2002. No serious problems at all. Well I suppose blockage is serious but so far it has been self correcting, but painful. In every case it was related to something I ate (and knew better). In about six instances I checked into a hospital. So far the treatment that always worked was an NG tube which decompreses the stomach and relaxes the pressure on the blockage. It is not a good idea to tough it out at home. Yes I have had my share of accidents which would make a good story. I was smart enough to marry a pretty nurse (62yrs ago) so I am badly spoiled. |
| Your name: | Mari |
| E-mail address: | marilena.montanari@hotmail.com |
| Country: | Canada |
| Comment or story: | I was diagnosed with ovarian cancer in August 2008. I had chemo and surgery and by February 2009, we thought that all was well. Six months later, I ended up in the hospital for a month with a bowel obstruction and discovered that my cancer had returned. I had surgery in October 2009 and I am now living with an ileostomy. I am having a very difficult time mentally. I understand that I need to get over it, but it is so hard. My oncologist will not tell me whether it will be reversed or not, so I keep telling myself to get over it. I know that it was a life saving procedure, but it is still very hard to get used to. |
| Your name: | Marilyn |
| E-mail address: | win2asa2@aol.com |
| Country: | USA |
| Comment or story: | My husband had an ileostomy January 1989 due to rectal cancer. Before his operation he had suffered several years from ulcerative colitis. Since having his ileostomy his quality of life has been so much better. He can go anywhere and eat anything without the fear of having an "accident." He uses the Hollister Premier Drainable Pouch with Panel and only has to change it about once a week. |
| Your name: | Lindsay van den Berg |
| E-mail address: | lindsay@headstart.com.na |
| Country: | Namibia, Africa |
| Comment or story: | In April '09 I went for a fairly routine gynae operation, woke up 11 weeks later, in a different hospital with a high out-put ileostomy! to say that it was a shock is somewhat of an understatement. It was performed after severe septicemia and generalized organ failure, the surgeon had 'nicked' my bowel. I have been left with all sorts of health problems. There are no stoma therapists in Namibia and if there is trouble I have to be flown to Cape Town in South Africa. Is there anyone who can give advice? Lindsay |
| Your name: | Lynette Meredith |
| E-mail address: | Lynnemeredith77@btinternet.com |
| Country: | South Wales United Kingdom |
| Comment or story: | My story is a Horror story, On the 13th of march 1996 i went into hospital for a simple bladder operation, Morning after the doctor came to see me and said i would have to use a Catheter to pass Urine for the rest of my life. Anyway my bowel wouldn't work so they were giving me Bowel stimulants and Enemas. This went on for a year, then one day as i sat in my kitchen with some friends i laughed out loud and the worse thing ever happened My bowels opened in front of everyone. Oh my god i was ashamed but they understood, to cut a long story short i found out that when they operated on my bladder the so called doctor had gone into my back passage and chopped all the spinghter muscles and did quite a lot of damage. I ended up with a Colostomy and yes i sued them. I now have an Ileostomy and in June od 2009 I had a total Proctectomy and the sowed my back passage up I've got a 19 inch scar down my stomach, the top of my wound wouldn't heal so i ended up in another hospital, They took me to Theatre and again they messed up up they had left a piece of sponge inside me i am now suing them again. My sown up back passage has got a collection in there I'm in so much pain i could scream the place down, |
| Your name: | Pam |
| E-mail address: | pdkraker@yahoo.com |
| Country: | USA |
| Comment or story: | Rosalinda, Sorry to hear you are having problems. I had my ileostomy surgery in July 1976, at 16 years old. It took awhile for things to settle down as far as the gas and watery stool. the diet was trial and error. I knew what foods cause gas so stayed away from them. Also stayed away from roughage. Chinese food was a big NO! But I can tell you this it gets better. You body will adjust to the change and you will soon feel better. I have since gotten married, had a child, she got married and now I have a grandson. Looking back, I didn't realize how bad I felt until I learned to live with an ileostomy and enjoy my good health. I change my pouch only once a day, rarely have leakage enjoy swimming and exercising with no problems. So I hope you can look forward and see that you can lead a very normal life with an ileostomy. I hope this helps you and I am available to help you along the way of you'd like. |
| Your name: | Christy |
| E-mail address: | Mackenzie_renea02@yahoo.com |
| Country: | Usa |
| Comment or story: | I had to have an Ileostomy in June of 2006. I had a horrible time
dealing with it. I was depressed to the max and didn't even want to talk
to anyone or hang out with my friends or anything...I had to keep going
for the scope down my throat and this past week i had a test and i have
more pollyps in my stomach and now i have them in the remaining part of
my small bowel which is scaring me BIG TIME!! i keep hoping for a break
with my health problems...and now this. I got to call the hospital back
this week to find out the results...I'm really scared!!! is there anyone else that's having this problem?...I just need someone to talk to....thanks for reading! |
| Your name: | Rosalinda Vasquez |
| E-mail address: | mari...@yahoo.com |
| Country: | USA |
| Comment or story: | I had a small bowel resection on 8/30/09, 5 additional surgeries for repairs because my intestine kept tearing up over and over...Finally i had an ileostomy done a month ago. I'm having a difficult time finding the better foods for me. I experience a lot of gas and loose stools. Causing abdominal pain and frequent ileostomy bag changes. Does anyone have any suggestions on a good diet for this problem? please help!!! I'm a big mess right now, I'm so depressed, don't know what to do anymore. Im lost |
| Your name: | Jean McAdams |
| E-mail address: | jmca...@yahoo.com |
| Country: | united states |
| Comment or story: | Not sure if I should be happy or upset. just had a ct done, and the results normal. I have had pain in my left side for about a month. occasionally would feel like a blockage, and nausea with eating. went in gastro ordered the scan and normal. so now what? any one else have these types of symptoms? I always look and all results are normal, if not perfect. why am I always in pain. |
| Your name: | MIchael Crawford |
| E-mail address: | redv...@yahoo.com |
| Country: | San Diego, CA, USA |
| Comment or story: | Hi, I have had an ileostomy for 5.5 years. The doctors has
identified a abscess and a leakage in the small bowl and have decided to
operate drain the abscess and fix the area that is causing the problems.
No fun. The operation will take place today. Wish me luck. God bless Mike |
| Your name: | Sharyn Wingate |
| E-mail address: | kova...@yahoo.com |
| Country: | Atlanta, Georgia |
| Comment or story: | I had my ileostomy 3 years ago this coming March following ovarian cancer which had spread to my colon. My entire colon had to be removed, and I had a complete hysterectomy as well. Needless to say, I had lots of problems adjusting to my ileostomy. The nurses at the hospital at which I had my surgery didn't even know how to put on a pouch! There was a wound-care specialist who came to teach me what to do in my room, but I was so out of it I didn't remember anything practically. Anyway, I've learned a lot by talking to my ileostomy supplies' provider and by trial and error. I recommend 1-inch "Perma-Type Pink Tape", which is waterproof and medicated with zinc oxide, to help hold on the barrier for the pouch. he Perma-Type Company's telephone number is (860)747-9999, www.perma-type.com It also helps the barrier hold on better when you're taking a bath or when the pouch bursts. My supplies come from Byram Healthcare, by the way. Susie, please tell your mother not to get discouraged. When I first arrived home after a month in the hospital, it took me several hours to get a pouch on without it bursting, etc. Finally, I talked to Hollister, the manufacturer (I was in absolute tears!), and the nurse there told me I hsd the wrong size of pouch (the one I'd been given at the hospital almost hung down to my knee!) and sent me free samples and also told me that I needed to try something with my barrier called an Adapt Barrier Ring (#7805). I always have leakage with my pouch and a barrier without using these adjustable barrier rings. I don't know if my suggestions will help, but feel free to write me if you have any other questions. |
| Your name: | Sylvia Sue |
| E-mail address: | ssbe...@yahoo.com |
| Country: | USA |
| Comment or story: | I had an ileostomy performed in 1964. It was supposed to be the kind that was temporary, to be hooked up later to the anus/rectum. However, I developed a serious internal infection (staph?) and ultimately ended up with a complete colectomy, with a stoma on my right side. In these last 45 years, I have had gallstones (eventually had total gallbladder/stones removed), kidney stones (from time to time over the years, but now take a "stone buster" medication to keep them from forming," and 2 C-sections for my 2 children born in 1971 and 1975. My ileostomy goes from mildly annoying to severely painful, depending on the climate and humidity. The first appliance was the kind you had to glue the wafer and the skin, and was frustratingly awful. However, through that long season of years, I had the 2 babies, finished my undergraduate degree, and started teaching school. Eventually, I was introduced to the appliance that sticks on like a Bandaid. Much increased quality of life resulted in finding that brand. Over the last 10+ years (of the 45 years since initial surgery) I have been developing a large hernia on the right side of my abdomen under the stoma. This has resulted in having to change appliances every 2 days or so, instead of going 5-7 between changing. Thinking about surgery now to move the stoma to the other side of my abdomen and "fixing" the hernia (looks like I'm pregnant on one side of my belly), but my surgeon is approaching this situation with caution, due to possible post-operative problems caused by adhesions. We shall see. I've lived a fairly norma, active life, except for this one thing. Keeping a watch out for the nearest "rest stop" on a trip; sharing a bathroom with teacher colleagues or others on trips; ileo appliance "leaking" at inopportune times, all add to the drama of life as an ileostomate. However, I feel blessed that I don't have something wrong with me that could be much worse than having no colon. At least, for these 45 years, considering the alternative, I'm doing fine. I wish I could find someone/anyone who has had a real ileostomy since the 60s. Anyone? Anyone? LOL. |
| Your name: | Donna |
| E-mail address: | dmal...@yahoo.com |
| Country: | USA |
| Comment or story: | I had surgery (which had to be done twice) in early October. I have had maybe a week of feeling like 1/2 a person. I'm now back to being in pain, no energy, and losing weight (even though I eat 3 x a day). I just found out that I have a fistula from the surgery site into the intestine and am awaiting to hear back from the Dr. as to next step. I have had Crohn's disease for over 30 years. I had 2 previous resection surgeries and was on hydrocodone for the past 4 years DAILY. Recently the Dr. states I should not be having this pain and refuses to prescribe any further pain meds. How long before I am supposed to be feeling like a semi-normal person again? I don't have any problems with the supplies, or bag/skin issues, just abdominal pain, burning, bloating, reflux, occas. diahrea, total weekness and loss of weight. Has anyone ever had treatment for depression associate with their condition ?? I sometimes wonder if it's not a depression related issue as well. |
| Your name: | Sonja Mason |
| E-mail address: | monh...@gmail.com |
| Country: | USA |
| Comment or story: | I went to the hospital to be induced to deliver my baby and unfortunately retained placenta that was not properly removed. As a result, I ended up in the E.R. a week later with life threatening sepsis. I underwent a forced hysterectomy that resulted in a colon clipping due to necrotic development from the sepsis. This caused me to be given an open ended temporary colostomy (as a portion of my intestine was removed) . I was 36 years old at the time and was hysterical. Several weeks after that wore off, I forced myself to cope with this colostomy until the reversal. I had several complications during the colostomy with no production and over production. During the reversal surgery, I also had my appendix removed, again due to the sepsis and it appearing as though it was ready to rupture. After the reversal, I thought I would be back to normal, but I am not. Not only do I continue to endure the emotional state of mind, but I actually feel my intestines moving, pain, mild burning from time to time and my diet has permanently changed. It has been 2 years since my reversal and I thought this would all resolve itself and it has not. I was told that the longer you wait to have a reversal the better the outcome. I HATED my colostomy so much I forced myself to get strong and had the reversal 3 months after it was installed to the day and this created a tremendous amount of scar tissue for me. Scar tissue can create blockages, temporary and possibly permanent ones. However, I did not learn this until after, so the longer you can wait a reversal, I encourage you to do so! Always willing to chat about care (as I became an expert at that) or support! Best of luck! |
| Your name: | Jen |
| E-mail address: | jlyn...@gmail.com |
| Country: | USA |
| Comment or story: | I think this is one of the hardest things I have done since my permanent ileostomy, is to sit here and admit to myself it's time to find someone like me, to talk to and that understands. This is my second one now and everything seems to go wrong. I started out 140 pounds and now since May I am 105 pounds. I always feel so alone even thou I have a very supportive family. I am 30 now and have been dealing with Crohn's for many years but didn't know what it was till I had my son in 03. I have been on every med, bill form, iv form, you name it. My first surgery went so bad I was in the hospital for over a month, a lot of the nurses I see now say I almost dyed but I don't remember a lot of it. So having my second surgery was very hard to get them to do. I thought it would be so much easier then the way I was living with the Crohn's, but the pain from skin braking down, bag leaking, throwing up, loss of weight everyday, wafers never staying on. Going in and out of the hospital. all the time to get fluids sucks. Maybe by posting this I can find a friend to talk to who might have ideas or ideas I can give them or just a friend who understands cause your living it to. |
| Your name: | Adele Giesen |
| E-mail address: | alwa...@hotmail.com |
| Country: | Australia |
| Comment or story: | my doctor diagnosed me with a cancerous tumour, after removing it, half my bladder and a huge portion of my intestine, I woke up with a stoma...I had a lot of trouble with this with the constant leaking and infection...so I was very happy to have my reversal...4 months later I'm not sure if I'm any better...my stomach is huge and I'm on the toilet all the time...some days I'm constipated, and full of gas with a lot of pain and other days I have very very small motions up to 20 times a day...I take Metamucil and coloxyl...I'm afraid not to take the coloxyl as I've always had to take something to go...I'm in constant pain and of course the burning is there too...please tell me if you have had these symptoms and are feeling much better...or is that what I will be like for the rest of my life? |
| Your name: | Susie Kasper |
| E-mail address: | susi...@gmail.com |
| Country: | united states |
| Comment or story: | My mother has an ileostomy and I am at my wits end. We can not keep a pouching system stuck to her. If it stays in place for 24 hours we are so happy. One days it had to be changed 4 times. Today, I changed it completely and less than 3 hours later it was leaking everywhere. This just goes on and on day after day. We just never know when it will let loose and actually explode everywhere. I have talked with everyone from wound nurses to ostomy nurses. What do I do from here. We are ready to beg the surgeon to reverse this regardless of the risks involved. Mother's quality of life is non at this point and time. |
| Your name: | Debbie |
| E-mail address: | daba...@comcast.net |
| Country: | USA |
| Comment or story: | I have an ileostomy due to rectal resection surgery because of rectal cancer. The surgery was 3 weeks ago and I have ileostomy reversal surgery scheduled in about month. I have read some horror stories about problems after the reversal and was hoping someone could tell me that it's not all bad. |
| Your name: | Helen |
| E-mail address: | hbru...@optusnet.com.au |
| Country: | Australia |
| Comment or story: | Had ileostomy in February this year. Large bowel taken due to bowel
cancer. Had peritonitis week after the initial surgery. ICU for almost a
month. Problem I have now is constant bloating, uncomfortable feeling in stomach, nausea, tightness across stomach. Live on nausea tablets, de gas tablets, buscapan. Have complained and visit hospital almost once a week with this problem. CT scans show nothing wrong. Possibly could be adhesions? Anyway just wanted to know if it ever gets any better? Anyone else experience this problem mainly after eating. I try to eat smaller amounts. Try to chew properly. But still have bloating. The bloating also affects my bladder and the problems won't go away. Hope to hear from anyone who has this terrible bloating happening. |
| Your name: | Georginne Pratt |
| E-mail address: | gepr...@xtra.co.nz |
| Country: | New Zealand |
| Comment or story: | Earlier this year I was operated on and am now a woman with a Ileostomy. I want to learn as much as possible about it as I can. |
| 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 colostomy 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 everything and have had expert advise from ET nurses and doctors 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: | Tammy |
| E-mail address: | jade...@hotmail.com |
| Country: | USA - OHIO |
| Comment or story: | Hi. I am a 40 year old recently married woman who has Crohn's
disease for the past 35 years. I have had a colostomy for 26 years and
will soon have the remaining lg intestines removed along with the
colostomy and will have an ileostomy. Along with being nervous about the
surgery, I do not know what to expect with the ileostomy or how it
functions differently from a colostomy. I understand there is a lot more
fluid (liquid) in an ileostomy than in a colostomy. Has anyone been in
my situation? Does anyone care to compare notes, whine, feel sad, cheer
each other up? I really don't know how I feel moment to moment on this,
would like to hear about your experiences/comments. Thanks Tammy |
| Your name: | Kelly |
| E-mail address: | eeyo...@hotmail.co.uk |
| Country: | England |
| Comment or story: | Im 15 Years Old I Was Diagnosed With Crohn's Disease When I Was 11. And I Had All The Medication But None Of It Worked So In January I Had The Ileostomy Bag At First I Hated It And Wouldn't Do Nothing But Now I Got Used Too It I Love It I Make Jokes About It That's How I Get Through It I've Had A Rough Time At School As well But I'm Determined Too Do Well For My GCSES Which Are In May X |
| Your name: | Mike Maurer |
| E-mail address: | mmau...@gmail.com |
| Country: | USA |
| Comment or story: | Well-we definitely have quite a mixture of stories here. I am sorry
for anyone out there who suffered because of medical mistakes. However,
sometimes we don't help the issue. I had a ruptured appendix and did not
go to the hospital-doctors figured over a week. Once I had emergency
surgery, I had holes in large intestine and ruptured appendix and
infection everywhere and went septic. Thanks to God to pull me through.
I was in ICU for weeks. This happened in April and I just returned to
work. I have a loop ileostomy that should be reversed in December. I don't love it-but with proper care it has been OK. I am ultra sensitive to adhesives and it does cause some skin irritation-but nothing severe. I read a lot of doom and gloom stories-but I am in currently in IT field but was in retail in college-and they always said never worry about the happy people-they rarely tell their story. The upset people will relate their story about 10 times and then multiply that. So I expect problems, but never complained about the pain, waking up with a colostomy and wound vac, 14 IVs, etc etc-because I really put it all in motion. You must face each day with a positive attitude-because I have always maintained that no matter what the problem is, someone, somewhere has a much much worse problem and they would feel lucky to have your or my problem. I understand some of the comments. Hey-my stoma is huge and herniated-so I look pregnant at a minimum -everyone I know knows my story and what I have. I make no attempt to hide it and yes-maybe because it will be reversed-however, I have also had some renal failure so maybe this is wishful thinking. I just think people are jealous they don't have one (especially those with irritable bowel, etc-what a relief! Keep your heads up-don't judge our doctors too harshly-some of our cases were surely in the worse condition and yes, mistakes are made. |
| Your name: | Tressa |
| E-mail address: | tres...@yahoo.com |
| Country: | Georgia, USA |
| Comment or story: | HI, I had my ileostomy 3 years ago and still have a hard time accepting it, after reading some of the e-mails on this page i feel ashamed of myself, I don't have hardly any of the problems that some have, I will have to do a lot of praying because of it to learn to cope with it, I have some pain around my stoma and it gets tender to the touch and a awful lot of diarrhea that is real bad 90% of the time, if i had not had it I would have died....if there is anyone else that feels the same please put in your opinion I think it just what I need to help, because no matter what condition your ostomy is it is hard to take no matter what, I am trying harder to learn to accept it, any comments is welcome bad or good, because I respect honesty...thank you for reading this and may God Bless. |
| Your name: | JoVonna Williams |
| E-mail address: | jpwi...@hotmail.com |
| Country: | Michigan |
| Comment or story: | I am a 30 yr old female who lived with severe abdominal issues for years. Was diagnosed with meg a colon. I live in MI, and was referred to Cleveland Clinic by my doctor. I had surgery Aug. 09,I now have an ileostomy. I am still adjusting, I was told the bag will only be for 3 months. I do have questions and concerns, about the reversal. Looking for anybody that just want to share stories, or anybody that can relate to where I have been.. I am truly blessed to have a job with insurance to pay for this and thankful there is a way to fix this problem.. I definitely have a new outlook on life and my eating habits.. ALWAYS BE BLESSED.. |
| Your name: | SC |
| E-mail address: | bcstransport@bmts.om |
| Country: | Canada |
| Comment or story: | I had surgery 3 months ago, with a temporary ileostomy, my problem is...as soon as I eat my bag is full and not digested. Does anyone have any suggestions? I am not gaining any weight, and not sure what to do. I am starving all the time, and I eat all the time, but yet my bag flows heavily. Can anyone help me? |
| Your name: | Carol |
| E-mail address: | carol_a37@yahoo.com |
| Country: | usa |
| Comment or story: | June of 2008 I had emergency surgery for a blockage in colon along
with a mass. I awoke with an ileostomy right next to my gutted belly
button. Yes this creates some problem with what to wear. After surviving
chemo I decided to accept a stoma as just part of me I do not try to
hide him at all. It is what it is I am grateful to still be here. No I
do not care to look in the mirror, but I never did much before. Now that
I am regaining strength back from chemo, I also gained weight back, so I
need to exercise and could use some help on what works and what does not
can you hurt the stoma or scar? has anyone injured their stoma? A youngster with tons of energy kicked me twice yesterday and I have been experiencing sharp quick intense pain, not constant but several times. I am not bleeding or cramping so I have not called Dr. Surely tomorrow I will be fine. would enjoy sharing daily life with others in the same boat. thanks |
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