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| Posted By: Bob Chapman Posted On: Oct 19, 2004 Views: 1496 | Ostomy management I was admitted six months ago as an emergency so had no idea what a colostomy was. I had been admitted to the wrong ward as it was so important to get me a bed so the nurses on duty didn't really know what the bag was either. After one lesson from a passing stoma nurse I decided that as the bag was mine I had to master it. After two failed attempts by agency nurses I started to give lessons! Believe me I never had a leak again. This week after only six months I have had a reversal, I'm a very lucky guy. Bob |
| Posted By: Janet Posted On: Oct 18, 2004 Views: 1333 | management I was very ill when I had my two surgeries that resulted in an ileostomy. I was in ICU and sedated for three weeks. After I was awakened I was so drugged that I had no short term memory and I couldn't remember which way the clip went. Any instruction was forgotten. My husband was my caregiver and we worked things out together. He often chuckled and said that there wasn't a "how-to" manual included with an ostomy. |
| Posted By: Char McCreight Posted On: Oct 18, 2004 Views: 1314 | Most of all the above I learned how to care for my ostomy from several sources. I had great teaching in the hospital and from my ET upon my return home. Do to alergy problems, I saw my ET many times a year for the first few years. I was also on the internet, checking out sources that were then and still are informative. I also attend a support group that is helpful. Twice a year we do not have a speaker but have a Round Robin where we share topics such as what has worked for us and problems we have tackled and how. This is a great group. My family is supportive but I have been the teacher on this end..... |
| Posted By: Denny Posted On: Oct 17, 2004 Views: 1351 | Ostomy management I'm a double ostomy recipient as a result of cancer and major surgery.The first 6 mo. to a year were very trying but along with my wife and a very compassionate,learned,and understanding E.T./ostomy nurse the confusion was greatly reduced. Now, almost 2 yr.later she is still very helpful. My E-mail address: knight2pawn1@yahoo.com |
| Posted By: Fred Posted On: Oct 16, 2004 Views: 1344 | How I learned... Yes, with input from the other sources, I learned, but I learned primarily on my own. The ostomy nurse at the hospital went through the song and dance, but I was drugged and only days from radical abdominal surgery. I was on my back and could see virtually NOTHING she demonstrated. The information overwhelmed me and I forgot 90% of what she said as she left my hospital room, my mind swimming, wondering, "What the heck was that about?" Not until then did it dawn on me what I faced. A visit by an ET nurse within a few hours of my arrival at home was similar, well-intentioned, but rather ineffective. As she left me on a lonely Friday afternoon, with no supplier within local distance, the skin barrier she had earlier installed on me, saying, "Now HERE'S how you do this," popped off my tummy. The supplies I had from the hospital were the wrong size (pouches didn't match the skin barrier). There I lay like a beached whale, flat on my back on my bed, my mid-section nude, stitches protruding, my stoma spouting urine onto diapers I held in my hand to absorb it. A grown man, I thought I had reached a new low. I jerry-rigged a very sloppy patch-job with adhesive tape, fearful I was damaging my new plumbing. It got me through the week-end until my rescue supply arrived. I've learned much since then, mostly through less traumatic trial and error, but through leakages in meetings and funny sensations that signal something's up. That's how we learn. My urostomy gives me little reason for concern now. I tend to it with an appreciation for what could go (and has gone) wrong. I find it a wonder to watch, and I am grateful for the life it has given me. Eventually, you learn in private, on your own. That's how life works. Best to you all. My E-mail address: bbbb9282@aol.com |
| Posted By: Christin Posted On: Oct 15, 2004 Views: 1389 | Ostomy Management - Urostomy My teaching came from my Mother since I was only 4 1/2 yrs old in 1970 when I had my first surgery. After that I learn tips and tricks on my own for the most part. I didn't have some interaction with an ET nurse in my early teens but up until a couple of years ago I did it on my own. I do enjoy the much improved products that are now available compared to what there was when I was a child. The stories many of us from those times could tell..... Well, we have top of the line now. I know no other way of life without my ostomy, it is part of me and who I am. My E-mail Address: TigsToy4@yahoo.com |
| Posted By: Darlene Posted On: Oct 15, 2004 Views: 1372 | Learning ostomy care My 11 year old son was born with psuedo-obstruction. When he was 2, he had emergency surgery resulting in an ileostomy. My first meeting with the ET wasn't very memorable to me. I was still worried about my son and could care less about the ostomy. After his situation improved, then I was ready to listen. Well, I didn't know how we were going to live like that. It took 2 or 3 months for things to settle down and to find the right pouch for him. An active toddler and changing the pouch 3 or 4 times a day was not fun. The ET's were helpful, the ostomy chapter and newsletters also helped. But it ends up being a lot of learning on your own what will work for you. My son's pouch lasts the week now and he rarely has accidents now. Boy there has been a few of those over the years, but it never slows him down for long. My E-mail address: dbarss@accesscomm.ca |
| Posted By: SUSAN Posted On: Oct 15, 2004 Views: 1362 | OSTOMY CARE I knew for about a month that I was going to have a colostomy because of over 30 years of Crohns and a wonderful Gastro who caught my colon cancer early by sending a biopsy to the Mayo Clinic. Prior to surgery I visited the ET nurse at the hospital who had me wear a bag for a week prior to the sugery just to get used to the feel. After the surgery the aides in the hospital drained and changed it for me and when I got home an ET nurse came about four times to show me what to do. Considering the alternative I have not regretted a single day. It's been 3 yrs since the surgery, still cancer free and it is nice not having the first thing I do when I go anywhere is to find out where the bathroom is at!!! My E-mail Address: IMAGIN80@yahoo.com |
| Posted By: Dianne Posted On: Oct 14, 2004 Views: 1510 | Thank God for loved ones I had surgery 8 mos. ago which left me with the all famous "bag" that we are all familar with. When the reality sunk in about my new addition, I refused to acknowledge it at all.The ostomy nurse came and tried to teach me but i refused to even look at it. When I got home a visiting nurse came for home visits to instruct me and again I refused to pay attention. I just could not accept this freakish looking hole in my side. So the nurse taught my roomate how to change,cleanse and skin care. through patience and tolerance she took care of my ostomy day and night for weeks until i came out of my stubborn self pity mode and began to accept reality and responsibility.thank God for caring people. I am now back to work and caring for my ostomy is just another part of life. My E-mail address: djackson6216@comcast.net |
| Posted By: Reg Posted On: Oct 14, 2004 Views: 1602 | Ileostomy Dear All Having had an ileostomy for more than 30 years I fully believe that, as long as you are otherwise well, then there is nothing that you cannot do in the normal course of events ( apart from streaking). The worst thing is to be inward looking and to think of yourself as different. I suffered UC from the age of 20 until I had the op at 28 years old. I did not want it, but to carry on living it was essential. During these eight years I spent many miserable long months in bed at home or in hospital, I knew every public toilet in the North of England and was acquainted with quite a number of fields too. After the op I thought I would be unable to continue working as a plasterer, so I retrained at a college for the disabled, and this opened my eyes as to the true nature of disability. There were young people paralysed in their lower limbs who had had their bowel removed in order to function. I was normal in every other way. This removed any traces of self pity which lingered and I decided that I could lead a normal life. Since then I returned to playing Rugby, playing regularly until I was 47, and I have toured to several countries, most recently to Canada in May where I played for 30 minutes against a Montreal Vets team. I have dived from a 10m highboard, cycled fair distances, and walked in Scotland, The Pyrenees and the lower slopes of the Alps.I will be attempting Maccu Pichu in Peru next year I eat and drink whatever I fancy ( except fresh coconut ), and have visited many different parts of the world, including third world countries Sri Lanka and Madagascar and had no problems with the food. I hope that this does not sound too much like bragging, but would hope that it indicates that an ileostomy need not be a handicap Regards Reg My E-mail address: duncan@waingap.co.uk |
| Posted By: Harry Rezzemini Posted On: Oct 14, 2004 Views: 1636 | Caring for new ostomy Much to my surprise, I awoke with my ileostomy on July 21, '04. I had surgery to rid me of Rectal Cancer following 6 weeks of chemo therapy and radiation therapy. Prior to the surgery the intent had been to cut out my tumor and splice the remaining rectal tissues back together. However, when the surgeons got inside they discovered that the radiation had "toasted" more of my tissues than anticipated and they had to revert to "Plan B" and remoe nearly all of my rectum and splice my sygmoid colon onto the remaining stump of my rectum. I had two or three sessions in the hospital with a stoma nurse learning to clean and change the bag, and after I returned home I had another three or four visits from a stoma nurse. I found them to be very patient and helpful, and they worked with me until I got over the psychological hurdle of cleaning the area around my stoma and changing the sacks. I am now pretty much self-sufficient, but I still have not learned to love my sack! I have had a few "learning curve" accidents (most of them while trying to attend a family wedding in Chicago - including a major failure just prior to the ceremony, which I missed, and another just prior to the reception, most of which I also missed!), but I've been "leak-free" for the past two months or so. In fact, I'm now back to work on a "light duty" basis. (I drive one of thos big over-the-road tour busses.) I stated with Hollister New Image two piece flange/bag appliances with Eaken seals. I was having skin rash problems with the first brand of skin barrier swabs I ws given, but have had great luck with the 3-M Cavillon No Sting Barrier Film swabs ... and no leaks with that product either. I typically change at a 4 day window, but the set I have on at the moment is on day 6 - and I'm not going to push it any farther! Botom line: Initial training from in-hospital and in-home stoma nurses, then learned a lotof little day-to-day details on Shaz's Ostomy list - plus a bit of trial and error. THE GOOD NEWS IS: X-rays taken yesterday confirm that I have healed well inside and will be a candidate for a reversal after I finish this round of chemo in January '05. WHOOPEEEE! Best regards to my fellow ostimates - Harry, in Allentown,PA My E-mail: harryrezz@enter.net |
| Posted By: Brenda Parris Posted On: Oct 14, 2004 Views: 1546 | My fathers ostomy care My father has a colostomy for 3 months now. I do all of his ostomy care. I learned from the internet. We were unable to get an ET nurse, the surgeon and GP said I know more about it than they do. No one ever tried to teach him how to care for it. I have tried but he doesn't want to learn. He will be going into a nursing home with in the next few months. My E-mail: bdp522@optonline.net |
| Posted By: donna Posted On: Oct 14, 2004 Views: 1499 | ostomy management I had my urostomy 44 years ago and there were no ostomy nurses. My mother and grandmother learned to care for it by trial and error and since I had it at such an early age, I just took over the care when I got older. When I was young, the bags were very large and cumbersome and I had to wear a belt to hold them on. Thank goodness they have improved over the years and I have tried MANY different brands. I found ConvaTec ActiveLife one piece bags and wouldn't give them up for the world. They stay on without any added adhesive or belt and last 3-4 days(sometimes 5). My E-mail: dwildberge@aol.com |
| Posted By: Anita Posted On: Oct 14, 2004 Views: 1547 | Ileostomy I almost died from complications of a "shredded" colon last December ('03) and had an ileostomy done on Jan. 13 '04. An ostomy nurse showed me what to do twice before I left the hospital, but it still took a few weeks before I wasn't really tense and grossed out about bag changes. It also helped a lot when I finished my "starter" box of clear, not pre-cut bags: I felt a lot more comfortable when I got opaque bags that I didn't have to worry about cutting to the right size, especially since my stoma was kind of irregularly shaped at first. I still haven't found one type of bag I really like a lot; either I don't like how difficult they are to clean out when I empty them, or the clips digs into my leg, or the two-piece ones are too bulky, or whatever. So I've got one I'm the most used to (Coloplast Assura), but I'm still looking for other options. There are two "support" groups here in the Twin Cities (Minneapolis/St. Paul) but as a licenced clinical social worker, I don't really consider them very supportive, more like educational support groups. If you talk to individuals before and after the monthly meetings you can get some good support, but there's no official group for those of us who need(ed) to go somewhere and cry about our major, sudden body changes, body image issues, etc., i.e., the deeper emotional issues that come up, as well as how to deal with more basic care issues. So after having 4 people tell me I should start a group here, I'm planning to sometime next year, once I feel I can handle the physical and emotional challenges of getting back into the workplace after years of being sick and being away, and after a full year of being quite sick and having 2 major surgeries (total proctectomy July 13 of this year.) It's all for the best though, I feel better than I have in years. My E-mail address: Meilandra@aol.com |
| Posted By: darlene Posted On: Oct 14, 2004 Views: 1503 | self taught...becoming a volunteer hi..i had my urostomy done in 2000. a nurse only came one time to show me how to put my bag on but not removing it or..anything else..good thing i was a nurse so i have had some experience with colostomy but never a urostomy. i just figured things out for myself..all this seems really crazy to be happening in this day and time..SO...i have decided to get trained so no others will have to go it alone ,i am also starting my own support groups in my area for all ostomies..thanks for all these posts ..i get alot of ides of what we need more of and care about ..keep up the good work..darlene My E-mail address: dcoplin@sbcglobal.net |
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