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Re: research before surgery

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  • julieatgoal
    Hi Brad, I m a 60 yr. old retired teacher residing in Eastern Ontario (not far from Algonquin Park), but writing to you from Florida. I had my surgery done
    Message 1 of 51 , Feb 3, 2012
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      Hi Brad,

      I'm a 60 yr. old retired teacher residing in Eastern Ontario (not far from Algonquin Park), but writing to you from Florida. I had my surgery done when I was 58. I am just going to address the issues that I think I know something about.

      Like you, I researched + researched (for 3 years) prior to making a decision to have an elected ileostomy. I had suffered from Ulcerative Colitis, on and off, for 33 years....the last episode being the worst (making me house bound) and lasting the longest -- 3 years.

      1.) Firstly, I researched (asking doctor friends of mine and several gastroenterologists in the GTA area) to find the best team to do the surgery...What I came up with was the team at Mount Sinai hospital in Toronto. I found out that when other colon-rectal surgeons anticipated having complications with surgery for a particular case/patient, they referred their patients to Mount Sinai hospital. As well, other surgeons who encountered problems during surgery had their patients transferred over to Mount Sinai for further surgeries. The Mt. Sinai team seem to be the pros. In my 9 day recovery, I met many patients who initially started out in other reputable hospitals and then for further surgery, or further steps, they ended up at Mount Sinai. So there is something to thing about.

      2.) My colon-rectal surgeon, Dr. Robin McCleod - who apparently is no longer at Mt. Sinai, advised me to lose as much weight as possible, (because I was obese), PRIOR to the surgery, because she was sure that the heavier a patient is, the more likely that the patient will get hernias (which she would have to repair during the operation.) I lost about 50 pounds in 6 months (because I was so sick with UC) and she was really proud of me, told me that I recovered faster than normal because I had shed the extra weight (215-to- 165 lbs on a 5 ft. frame) Plus I had no hernias prior to the surgery!

      3.) For 3 years, I researched having an inner pouch called a "J-pouch" which I wanted very badly and is another important reason that I chose Mt. Sinai -- They are experts in J-pouches. In the end, I regrettably didn't qualify for a J-pouch, which broke my heart.

      4.) Prior to my operation, I visited an ostomy supply store and talked to a rep about the different products...That way I could see and feel the products. I also called up the 3 main companies and asked for free samples, which they happily couriered me.

      5.) I don't know about saunas, but I swim every day -- I live by a lake at home (in Bancroft) and I spend 5 months of the year in Florida. I either "picture frame" my flange with extra, breathable tape called " Hypafix" by BSN medical GmbH, or even better, I use "Sure Seal Rings" which claims and actually does, keep the water out. I alternate each week between these two, so that my skin does NOT get sensitive to either one.

      6.) I don't have skin issues, I believe, because I alternate between 3 different products -- changing them each week. I feel that this prevents my skin from getting too sensitive to a certain adhesive. Prior to alternating, I used to get itchy and red by the 7th day.

      7.) Finally, about odor. After a short while, I got used to the odor. However, for the sake of my husband, I use Fabreeze in my bathroom, and when visiting a public place or a friends home, I keep a small spray(I think by Glade) in my purse and use that. Mine has a citrus odour.

      Well, I have to hand over my lap top to my husband....next time, I will talk about E-Z vents and Adapt stoma powder, 2 wonderful products that I wouldn't want to be without.

      Best of luck,

      Julie G from Bancroft, ON, writing to you from New Smyrna Beach near Daytona.
    • rodirtor
      Hi Julie, ... ======I was hoping that venting was only something that people with colostomies had to worry about - oops I am taking 16 capsules of curcumin a
      Message 51 of 51 , Feb 5, 2012
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        Hi Julie,
        Thank-you for all the information. I have included some responses:

        --- In ileostomy@yahoogroups.com, "julieatgoal" <julika1@...> wrote:
        > Hi Brad,
        >
        > I'm a 60 yr. old retired teacher residing in Eastern Ontario (not far from Algonquin Park), but writing to you from Florida. I had my surgery done when I was 58. I am just going to address the issues that I think I know something about.
        ========I live not far from the northern boundary of Algonquin Park. I suspect that people unfamiliar with this will think that we are neighbours. It might help if they knew that Algonquin is bigger than some countries. I will also be 58 when I have my surgery.
        >
        > Like you, I researched + researched (for 3 years) prior to making a decision to have an elected ileostomy. I had suffered from Ulcerative Colitis, on and off, for 33 years....the last episode being the worst (making me house bound) and lasting the longest -- 3 years.
        ==========Sorry to hear about the direction your life took. I have the blessing of not being in any discomfort, nor has there been a change in bathroom habits. I have Hyperplastic Polyposis which is an uncommon condition that with some degree of certainty will become cancerous.
        >
        > 1.) Firstly, I researched (asking doctor friends of mine and several gastroenterologists in the GTA area) to find the best team to do the surgery...What I came up with was the team at Mount Sinai hospital in Toronto. I found out that when other colon-rectal surgeons anticipated having complications with surgery for a particular case/patient, they referred their patients to Mount Sinai hospital. As well, other surgeons who encountered problems during surgery had their patients transferred over to Mount Sinai for further surgeries. The Mt. Sinai team seem to be the pros. In my 9 day recovery, I met many patients who initially started out in other reputable hospitals and then for further surgery, or further steps, they ended up at Mount Sinai. So there is something to thing about.
        ========My genetic studies are being done through Mt Sinai but my oncologist (Dr. N. Baxter) is at St. Mike's. I am not particularly worried about the surgery. If I understand this right, it is generally straight forward if one does not have fistulas and adhesions from a long-standing inflammatory condition. Have I got that right?

        > 2.) My colon-rectal surgeon, Dr. Robin McCleod - who apparently is no longer at Mt. Sinai, advised me to lose as much weight as possible, (because I was obese), PRIOR to the surgery, because she was sure that the heavier a patient is, the more likely that the patient will get hernias (which she would have to repair during the operation.) I lost about 50 pounds in 6 months (because I was so sick with UC) and she was really proud of me, told me that I recovered faster than normal because I had shed the extra weight (215-to- 165 lbs on a 5 ft. frame) Plus I had no hernias prior to the surgery!
        ========Wow! That is an impressive wt loss....too bad that you had to feel tough while achieving it. I am feeling pretty lucky, as I said. I only need to lose about 15 lbs which because of the hydrocortisone sits right on the gut. There are no major creases though and from what I can gather, that is a good sign.
        >
        > 3.) For 3 years, I researched having an inner pouch called a "J-pouch" which I wanted very badly and is another important reason that I chose Mt. Sinai -- They are experts in J-pouches. In the end, I regrettably didn't qualify for a J-pouch, which broke my heart.
        ========I will be losing the rectum as well.
        >
        > 4.) Prior to my operation, I visited an ostomy supply store and talked to a rep about the different products...That way I could see and feel the products. I also called up the 3 main companies and asked for free samples, which they happily couriered me.
        ========That's what I am going to do too. I tried to contact our ostomy nurse but I think she is holding out for a Dr. referral as she never replied. The rumour mill has not been very kind about this person but I am trying to keep an open mind.
        >
        > 5.) I don't know about saunas, but I swim every day -- I live by a lake at home (in Bancroft) and I spend 5 months of the year in Florida. I either "picture frame" my flange with extra, breathable tape called " Hypafix" by BSN medical GmbH, or even better, I use "Sure Seal Rings" which claims and actually does, keep the water out. I alternate each week between these two, so that my skin does NOT get sensitive to either one.
        =======Not ready to even think about swim suits yet :) Used to scuba dive when on holiday.
        >
        > 6.) I don't have skin issues, I believe, because I alternate between 3 different products -- changing them each week. I feel that this prevents my skin from getting too sensitive to a certain adhesive. Prior to alternating, I used to get itchy and red by the 7th day.
        =======Like some others with mercury toxicity, I am prone to eczema and other skin problems. My skin is very sensitive to touch - I rarely get insect bites because I can feel them land. I have dermographia and get some hives and know that I have mild reaction to some bandage adhesives which could conceivably worsen if exposure times increased.
        >
        > 7.) Finally, about odor. After a short while, I got used to the odor. However, for the sake of my husband, I use Fabreeze in my bathroom, and when visiting a public place or a friends home, I keep a small spray(I think by Glade) in my purse and use that. Mine has a citrus odour.
        ========Guess I better review the Seinfeld episode with the "Man Purse".
        >
        > Well, I have to hand over my lap top to my husband....next time, I will talk about E-Z vents and Adapt stoma powder, 2 wonderful products that I wouldn't want to be without.
        ======I was hoping that venting was only something that people with colostomies had to worry about - oops
        I am taking 16 capsules of curcumin a day in an eleventh hour attempt to reverse the polypois. Takes months to work but I will know by fall.
        http://www.jhu.edu/gazette/2006/07aug06/07curry.html
        >
        > Best of luck,
        >
        > Julie G from Bancroft, ON, writing to you from New Smyrna Beach near Daytona.
        >
        ======Thanks again for taking the time to write all of this. brad
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