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Vanessa....
I have an iliostomy, but am going to attempt the j-pouch surgery that unfortunetly did not work out for you.
I was told that I could have the surgery six months from having the iliostomy... (that would have been Sept.) but was just at the surgeon's on Tuesday and informed that it will be more like November.
Anyhow.. I am very dissapointed and I can identify with many of the things you wrote in your e-mail.
If you want to write to me privately, I am debrakirsch@... and I can maybe help you out.. or at least we could share some of our ups and downs.
It is a shock. It is tiring to deal with day after day. And you should get some counseling. But.. I still find it hard to fully inform people.. like the therapist I see.. and my parents and my boyfriend, of what it is EXACTLY I am going thru. My therapist makes great suggestions, but I can tell, he just hasn't a clue to what's going on. SOmetimes, I just feel like showing him my iliostomy.. like wearing one of those clear bags I overordered when I first had surgery.
And.. my dad, g-d bless him, he's so supportive in every way.. but I have been having leaks lately and he suggested I get a pre-cut appliance/bag.. thinking that would be easier.. He doesn't understand that my stoma changed size a little bit and is a kind of odd shape and that.. well.. I will always need a cut to fit bag until I get that j-pouch. In fact, I need to consult a special E.T. nurse to help me out.
Hey.. I wonder if the E.T. nurse would know of any counselors that are familair with iliostomies and all the issues that go along with them.
I can understand about you wanting to leave the underware on... I just.. well...
hey.. hang in there.. and write to my personaly if you want and I can tell you some stuff. etc. etc.
I know I know, it's a shock. Every few days I MAKE myself look in the mirror naked. And each time, it's a shock. ANd, as you know, the j-pouch is not fool-proof, so I have to be mentaly prepared that it could fail.
I need to think about that NOW.. even though I am so hopeful about getting the pouch and having it work.
well.. it's late. I must try and sleep.
as my tax attorney says... Hang in there.. it beats the alternative!!!!
all my loving,
Deb
Hi Vanessa,I was wondering why we hadn't heard much from you since your surgery. I am sorry you are having so many problems. If you need to chat I am on Yahoo IM....You can always leave me an offline message. Hugs, Sandy
Vanessa Harrison <tessaflytrap@...> wrote:Hi Kathleen I have had three ileostomies over the last 3 years, my most recent being made 28th April 2004, which is now permanent, so I now have a barbie butt. When I had my first ileostomy I knew it was only temporary, at least I thought so I dealt with it very well, I carried on going to the gym, swimming, dating, sex etc, it never bothered me, because in my head I knew it was only going to be for about 6 months so it was easy to accept. ALso I felt very well after the initial removal of my large bowel which was due to ulcerative colitus. When I had my loop ileostomy made in May 2003 which was made as I had an internal pouch built, big mistake, it was a nightmare, my bags kept falling off, the output was very watery and speradic and I was very ill for 6 months after, abcesses, weight loss, depression, and I lost all my confidence so blokes and sex were out of the question, so was going out, but I did go swimming and sunbathe on holiday in the September of 2003 with my friends, but was not well enough to go to the gym.The pouch did not fail as such but my sphincter muscles did and when I had the pouch connected I suffered permanent incontinence, pain, depression and weight loss, I begged my consultant to take it away but he insisted I persevere, then in April this year he agreed it had failed and told me the only option was to have a permanent ileostomy. I was given no counselling and have found and am still finding it very difficult to accept that this is it for the rest of my life. No-one prepared me for the shock and it is all very well the consultant saying to you, 'You have to get your head round it being permanent', it is easier said then done after having three years of constant surgery, illness and depression, more support should have been available. If it were not for this website I probably would have topped myself, I felt so low for so long and yes the antidepressants have helped but its not the answer. As for sex and blokes and going out there has been none of that for 15 months, although I did go out last week with my close friends for the first time. I miss relationships but am not ready for intimacy yet although when I did have my ileostomy before I always kept my underwear on, even when having sex, although I only did it on 8 occasions, and just moved it to one side, never took it off. Swimming I wear a waist high, patterned trendy bikini which I got from Allders but am constantly checking my bag for leaks and if you can see it, although my friends say you can't. I go on holiday with my son in 2 weeks and am very nervous in case my bag falls off, in front of strangers, but I will just have to get on with it and try not to let it spoil my holiday.Hope this has been some help.VanessaHull (England)----- Original Message -----From: pkwebster2004Sent: Monday, July 12, 2004 3:49 AMSubject: [stomacentralint] Nursing student seeking answers about ostomies
Hello, my name is Kathleen. I am about to graduate from RN school in
August. I am currently working on a teaching plan that myself and 4
other students have to present to our class. We are trying to cover
several aspects of ostomies, and my assignment is to learn how people
with ostomies deal with the active side of their lives. Can any of
you give me some tips that only people who live with ostomies would
know. How you deal with your bag/appliance while swimming or in a
bathing suit? How does it affect exercise/sports? How do you and
your partner handle it while being intimate? I am not only
interested in this information because of my presentation, but soon I
will be caring for clients on the Med/Surg floor, and I would like to
help my ostomy clients as best I can. Your insights and tips will
help me care for them. Thanks for any help you all can give me!
Kathleen
Pasco-Hernando Community College
New Port Richey, Florida, US____________________________________________________________________________ This email and all attachments have been scanned by Kingston Communications' email Anti-Virus service and no known viruses were detected. ____________________________________________________________________________
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