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ejl10
ejl10
Senior Member
Last Activity: Today, 3:17 PM
Joined: 29 May 2019
Location: Charlestown, MA (C5/6/7 sensory incomplete)
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    I wouldn't quite say I'm "enjoying" it just yet. Tolerating it with optimism is probably a better characterization. Admittedly, for a week or so afterward I thought I made a huge mistake. So my guess is that it will continue to get better until such time as I feel like it was a great decision....
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    Excellent! I'll look into that barrier ring, too. I don't have a wife to help me out with this and will need to do it independently, so I'm not quite sure about the hair dryer, but somebody else mentioned a heating pad which is well within my range I'm sure....
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  • ejl10
    commented on 's reply to Questions about a possible colostomy
    in Care
    Even so, that's very impressive and I can only hope I can achieve the same!
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    14 days!?! Holy moly, sign me up!...
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    Great advice, and certainly less stuff required than they required while "teaching" me in the hospital! Prepping for three changes at any time sounds about right based on my level of fear. What about wafers? Do you carry extras of those as well, just in case you need to make a change while...
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    Hard to be patient given the high expectations, but I'm doing my best. Turns out the surgeon discovered a little something while he was in there. He didn't tell me, but reading through his notes I found out that I had something called a redundant colon, which basically means my colon was longer than...
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    Thanks, good to hear! Everyone talks about it as the best decision they ever made, but clearly there's a warming up period before you get there. I'm looking forward to it!...
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    Just want everyone to know that I made it out of the hospital safe and sound. I never had any symptoms other than a pretty high fever during the first few days. Thankfully, nothing respiratory ever came up, though I definitely spent time practicing my breathing. Hope everyone else is able to stay away...
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    Thanks for the information! As KLD said, my colostomy will probably require some different equipment, but I'm eager to learn and therefore feel like there's value in knowing even what makes better sense for an ileostomy. I appreciate it!...
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    That's the best I can think of, too. Turns out the rehab nurse that came with me when I met the ostomy nurse a few days before my surgery also got the virus. None too happy!

    Unfortunately, the ostomy nurse was not as helpful as I expected based on conversations prior to the surgery. He...
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    Thanks for the tips! I was released from the hospital and I'm back in rehab now. Unfortunately, 12 days laying in a covid wing with limited ability to move around at all really left me in a bad spot. I've had a pretty bad case of myositis ossificans in my right quadricep/pelvis for about a year, and...
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    So, a bit of an unexpected update here. Perhaps also a cautionary tale for our times! I had my surgery on Monday, they told me everything went well. By Monday night I was feeling fevered, and a little sore. No headache though, so I didn't think too much of it. By Tuesday morning the fever was pretty...
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    That's fantastic, thanks for the tips! out of curiosity, how smooth was your bowel program prior to the colostomy mine had been pretty problematic for the last year, which is why I had dialed my diet and meds to such an extent, but I'm pretty darn hopeful I can dial that all way way way back! Also,...
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    How do you find the one piece? Seems difficult to me, but maybe it gets easier. Do you have any hand function beyond tenodesis?

    I think he's worried that if I put on weight there will be folds in my belly that would make it hard to adhere the wafer....
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    Fantastic, sounds like you were really able to cut back. What about the types of food you eat? Any restrictions there?...
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    So now that the deed is done, I'm looking forward into the future and trying to figure out what needs to change. In particular, I had a very carefully tailored diet before, an effort to make my already challenged bowel program as tenable as possible. Here's what it consisted of:
    - Lots of protein,...
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    Last edited by ejl10; 3 Nov 2020, 3:22 PM.

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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    Update to all: I had my surgery this afternoon and I'm told everything went well. Ended up with the lower placement after talking to my doctor, though he definitely cautioned me to watch my weight. Probably a good impetus to stay as healthy as I can!

    Haven't yet had the opportunity to deal...
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    Fantastic, thank you! I figure I'll wait a couple months for the stoma to settle in at its long term size, then I'm definitely getting one of these!...
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    I'm a C5/6 but with triceps so function more like a C7. I just saw the cutters for the first time online, and that's awesome! I was thinking of having some friends make something just like that for me, but much better if I can get it commercially. I'll save my friends' engineering time for something...
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  • ejl10
    replied to Questions about a possible colostomy
    in Care
    Oh man, this sounds very familiar. When I first got out of inpatient, my girlfriend was there to help me. Then, when she decided to move on I quickly had to scramble and get friends and a caregiving aid trained up. Friends moved away, and with aging parents I was left with my caregivers and my sister...
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