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| Posted By: Casey Posted On: Oct 14, 2004 Views: 1384 | ileostomy mgmt I am one of those w/ a mixed history. I was diagnosed w/ UC at age 20 in 1994 and at that time we chose the j-pouch procedure. After 3 months of a dreadful loop ostomy where I had to change by bag twice a day and had raw skin, I had the take down. It was successful for a few months. Then, I developed a rectal-vaginal fistula and was diagnosed w/ Crohns. They said I needed a perm ileostomy. 9 years ago this month (Oct) I had a perm stoma installed and have been ever so happy with it. I had a little ET nurse visit with the first time w/ the loop, but when the perm stoma was installed, there was no one to help me. Since I had such an awful time w/ the loop stoma...the perm stoma was a relief. It is properly shaped and I only change my appliance every 5 days or so. Most of my experience has been trial and error as most of the info the nurse gave me in round one was awful...almost everything she taught me is opposite of what works for me. If anyone is really reading this...there is a new product out that is a non-adhesive ostomy system. If you go to this website www.ehob.com, there is a number you can call and they'll send you a free sample. Haven't got mine in yet, looks a little scary, but I'm willing to try it. My E-mail: caseyvigue@hotmail.com |
| Posted By: Jim in Maryland Posted On: Oct 14, 2004 Views: 1302 | Colostomy I've had my colostomy since Dec 8 2003 (9 months) I had to get it because of colon cancer that was discovered when i had my 2-year physical. I was lucky becaise my wife was at the hospital when the ET nurse showed what had to be done with the colostomy. We had an Et nurse stop at the house 3 times which was helpful, they stopped because i went to my daughters for christmas. (you have to be housebound). I tried different things from info i got from this site, the newsletter, and other web sites and suppliers by phone. I had a heartattack and bypass surgery in march to complicate things. If i start feeling sorry for myself i just go to shazs site or UOA and read about other people that have it a lot worse than me. |
| Posted By: Ray Posted On: Oct 14, 2004 Views: 1277 | Management I began living with my urostomy when I was 7 years old. I am 55 today. The doctors gave initial support. We visited with another ostomate. My Mother was the primary support early. I became self taught and now the internet and reading fill this out. I never met an ET nurse. I do not think they had them in 1957 My E-mail address: rschulte49@aol.com |
| Posted By: Patsy Johnson Posted On: Oct 14, 2004 Views: 1277 | Ileostomy I took ulcerative colitis when I was in my 20's and took the sulfa and predisone for 18 years before they finally did surgery and I ended up with an ileostomy. I was so happy to have the surgery and have never thought twice about not having it. That has been 18 years ago and all I can say is "Praise the Lord", I now can live. My E-mail Address: pbox13@aol.com |
| Posted By: Carole Myron Posted On: Oct 14, 2004 Views: 1272 | Ostomy Management If it weren't for the support groups, both online and off, I don't know what I would have done. A urostomy is not an easy thing to manage, and I had many, many, disasters before I finally settled into a routine that works (most of the time). Your website, in particular, was a major help to me! I also joined the Ostomy Association. My E-mail: Scolioly2@aol.com |
| Posted By: Kay Posted On: Oct 14, 2004 Views: 1323 | Ostomy management I have had my illeostomy for 22 years, after suffering from ulcerative colitis for 10 years and taking a minimum of 28 pills a day for "a normal life" which it wasn't. I wish I had the surgery at least 5 years sooner, but that is water under the bridge now. I live in a rural area where I do not have the luxury of a ET nurse, at least not within 100 miles. I learned by trial and error mostly, and the love and support of family. I now volunteer at the local hospital if anyone has this type of illness or surgery, to go and see if I can help answer any questions they may have, or find someone who can. When I had my surgery back in 1982, I was 26, had 4 children below 5 years old, and my "Ostomy therapist" at the time was a 67 year old woman who had read a book about ostomies, but had never had one. Needless to say, she could not answer most of my questions. Kay My E-mail: rumennek@yahoo.com |
| Posted By: Phyllis Posted On: Oct 14, 2004 Views: 1333 | Fellow ostomate helped fine-tune my technique I took your poll and checked ET nurse. However, it was a friend and fellow ostomate who fine-tuned it for me. I think it takes someone who has lived with a stoma to know the little idiosyncrasies of caring for it. My E-mail: provner@yahoo.com |
| Posted By: Vicki Posted On: Oct 14, 2004 Views: 1318 | How I Learned I'm 37, and I've had my ileostomy for almost 4 months, so I'm still learning how to manage it. I had ulcerative colitis for 5 years, and my only regret is that I didn't have the ileostomy sooner so I could have been spared a lot of pain, fatigue, and stress. I had a great ET in the hospital who taught me the basics of changing it. She also did a great job of selecting a 2-piece appliance that I have been extremely satisfied with (no leaks so far). I've also learned by trial and error. Just this past weekend, I learned that it's best not to change it after eating Indian food - even several hours later! But I think I've learned the most from reading the discussions and links on the UOA website. The Evansville chapter's web site has been particularly helpful. So to all of you who participate in those websites or other ostomy web sites, a huge thank you and a standing ovation! My E-mail: vrg67@hotmail.com |
| Posted By: bill embick Posted On: Oct 14, 2004 Views: 1293 | colostomy-- empting pouch I seem to be very lucky, had colostomy last Nov , cleaned pouch for about a month as directed. Then my son told me about liners for the pouch. , from Colomajic. No cleaning, no mess, pull out liner, put in ziplock bag and in-sert new liner, takes 2 minutes . (Im 75 and have had no problems) E-mail address: bembick6@aol.com |
| Posted By: Josie Watson Posted On: Oct 14, 2004 Views: 1234 | the care of your ostomy As a Registered Nurse learning to care for my ileostomy has been a work in progress. The actual physical care, measuring, cleansing, applying and so forth was the easy part. Of course I had to accept it. The first time I looked at my stoma was one of terror initially but that was momentary. I realized what having an appliance meant and I wanted to care for it by myself. One of the nurses did a change for me the initial time but after that I preferred self-care. Over the last four years I have had to consult with an ET a few times when travelling or skin irritation happened. For the most part I have a healthy stoma and life. Without my stoma I wouldn't be here right now, so it is an important part of me. My E-mail: watsons@uwindsor.ca |
| Posted By: clayton Posted On: Oct 14, 2004 Views: 1195 | ostomy management I was luckier than most as I had a 2 month warning that I would recieve a colostomy because of cancer at my anus. During that time I read all I could on the subject, I borrowed some O.Q.magazines from a friend and read as much as I could they were very helpful.After surgery[and 1 accident] I learned that if I put three small holes in the very top of the bag [I use a toothpick]this keeps the gas from building up too much preasure in the bag, also by putting dried parsley in the bag there is very little smell. Hope this helps someone |
| Posted By: Lee Posted On: Oct 14, 2004 Views: 1215 | Colostomy I had emergencey surgery for a perforated bowell on June 27th-2004. I knew nothing for over a week or more. Was in ICU and then in a private room for they did not think I was going to make it. I am 83 years old and now after four months and weeks in rehab and in bed at home I am on a recovery path. My incision has now become infected and has been draining. Nurses come every day to pack the wounds. I started with one hole and now two more are opened---I feel like Mt. St Helen. I am draining very well and hope my session with this will be over soon and I will be able to go outside of this apartment. I have been nowhere since June 27th-except for hospitals-rehab abd nursing at home. Was on a wound vac for two months and it closed the primary incision -until it is very small. The depth is still there and that is the reason for the packing. I am now able to walk with a walker and feel so much better. My friends visit me and we play cards once a week and that helps to break up the weeks. I watch a lot of TV and am at the computer too. Have found out that so many young people have ostomies from Chrones. My sister has lived with it for years. She has an internal iliostomy. She is now 80 and has lived with this for all of these years. She has many many bowell problems and much pain. I will get used to mine-but the nurses have done all the changing of the bags and yesterday was the first time I have ever emptied it by myself. My sister has been doing it. I guess I sound like a complainer-but I just had to pour all of this out to complete strangers for I don't complain in real life. I do think it is repulsive and I know in time I will learn to live and to cope with it. I have had a few accidents and the bag has opened up while I have been at the computer---some mess. Lived through it and keep on ticking. The wound nurse comes daily and it is almost time-so until later. Lee-in Tampa Florida My E-mail: res1ltkd@verizon.net |
| Posted By: barb Posted On: Oct 14, 2004 Views: 1209 | Ostomy My emergency colostomy due to a perforated colon is a little over a year old (June 03). Reversal surgery failed last Sept. After the emergency surgery the ostomy nurse visited me once in the hospital to show me how to change the pouch. She came back a second time at my request as my hospital stay got extended. She was available after I got home, but didn't take my problems seriously (although they were serious to me!). If it wasn't for Shaz's board and Larry's Evansville site, I probably would have gone out of my mind trying to deal with this alone. It shouldn't have to be this difficult! A lot of my management has come from trial and error, but without the above 2 sites, it would have been more error than it already was. Thanks to everyone out there that has helped me get thru this. My E-mail: barb1234@sbcglobal.net |
| Posted By: Veralynne Malone Posted On: Oct 14, 2004 Views: 1233 | My Ostomy I have had my ostomy sin 1980. I had some very good teachers in the hosptial I was in who were very good at showing me what to do. When I first started I had hollister which I had to change every three days. Then a few years later another ET nurse at the clinic I was going to told me about Squibb and I have been with them eversince. I have had my share of "accidents" but I try to take them in stride. I haven't let mine get me down. I have had two children since I had my illeostomy. I have a great job and a wonderful husband who had dealt with it superbly. I am just glad I had it done as I had Ulcertive Colits and almost died. The only issue I have is that sometimes it itches like nothing else under the flange and when I change it I sometimes scratch til I bleed. I have seen some of the new ones that have different flanges and such, but if I can't "burp" it I don't want it. Kudos to all that have any type of ostomy. We are a special breed of people. My E-mail address: v.e.malone@att.net |
| Posted By: Ann Posted On: Oct 14, 2004 Views: 1280 | Ileostomy I have had my ileostomy for just over 30 years. When I had the first surgery in 1974 there were no ET nurses, so I just had to go it alone. My first contact with an ET nurse came about 8 years later, as my niece is a nurse & the hospital she worked for had just added an ET nurse to their staff. This ET nurse helped me considerably, & since then I have consulted one periodically. I have had 5 surgeries in all for ileostomy problems, as I have Crohn's Disease, which as you know is not curable. My last surgery was in Nov. of 2003, & I am doing fairly well now, but really have to be careful about dehydration. There are so many new products on the market now for ostomies, which is much better than in 1974. My E-mail: AAuntNitaTX@aol.com |
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