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    #46
    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 with any movement, but I'm optimistic based on everything I've heard from you guys. Scared but very hopeful!
    C5/6 complete (maybe) circa June 2018

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      #47
      Very great!
      69yo male T12 complete since 1995
      NW NJ

      Comment


        #48
        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, including 25g of whey protein in my morning protein shake
        - 38+g of daily fiber, including lots of dark green veggies and a minimum 6g of soluble fiber from Acacia each morning in my protein shake
        - 17g of Miralax in my morning protein shake
        - If I'm worried about protein or fiber that day, I will have another protein shake at lunch with 15g of protein and 5g fiber
        - 100mg Colace stool softener 3x daily
        - 2x 8.6mg Senna Plus once daily (includes another 50mg of Colace)
        - 1x Digestive Advantage probiotic pill once daily
        - Muesli and granola with soy milk for breakfast
        - Mixed nut and granola snacks (heavy on the almonds) throughout the day
        - Little to no dairy
        - Minimal carbohydrates other than fiber
        - Rarely eat red meat

        What should I keep consistent, and what should I look into changing? It would be great if I could relax my restrictive diet a bit (I really miss the occasional ice cream and pizza!) but my priority is making sure that I do whatever is necessary to keep this thing going well.

        Thanks in advance!
        Last edited by ejl10; 3 Nov 2020, 3:22 PM.
        C5/6 complete (maybe) circa June 2018

        Comment


          #49
          COngrats. on getting it done. I dropped all the colace, stool softeners, Miralax etc. after my Sigmoid Loop. The only thing added was one Imodium pill in the morning to help with a more solid stool. I keep a small supply of Senna for the odd time I feel I may be getting backed up. That may have happened two or three times in the 10 I've had mine. Drink lots of water too.

          Comment


            #50
            Congratulations, hope all goes smoothly from here for you. I use the one piece disposable system my ostomy nurse recommended for me (a c6/7 quad)
            https://www.scisupply.ca/products/es...ed-end-pouch-4

            Originally posted by ejl10 View Post
            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.
            why the weight advice? is it because the stoma will change?

            Comment


            • crppled007
              crppled007 commented
              Editing a comment
              That's like the one that I use, although my bag is on the upper left so it's easier for caregivers to get to

            #51
            Originally posted by Patrick Madsen View Post
            COngrats. on getting it done. I dropped all the colace, stool softeners, Miralax etc. after my Sigmoid Loop. The only thing added was one Imodium pill in the morning to help with a more solid stool. I keep a small supply of Senna for the odd time I feel I may be getting backed up. That may have happened two or three times in the 10 I've had mine. Drink lots of water too.
            Fantastic, sounds like you were really able to cut back. What about the types of food you eat? Any restrictions there?
            C5/6 complete (maybe) circa June 2018

            Comment


              #52
              Originally posted by beckman View Post
              Congratulations, hope all goes smoothly from here for you. I use the one piece disposable system my ostomy nurse recommended for me (a c6/7 quad)
              https://www.scisupply.ca/products/es...ed-end-pouch-4



              why the weight advice? is it because the stoma will change?
              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.
              C5/6 complete (maybe) circa June 2018

              Comment


                #53
                Originally posted by ejl10 View Post

                Fantastic, sounds like you were really able to cut back. What about the types of food you eat? Any restrictions there?
                No food restrictions what so ever. I had to find a new hobby to take up the time I used to spend sittin' on the pot. And, no worries about needing to find a bathroom or if one is accessible away from home. I can change out my bag in under a minute, at most, if needed. I keep three bags wrapped in two papertowels each inserted in the throwaway bags in my pouch under the chair and also three of them in the door of my van along with extras and an extra appliance if needed in a small canvas shopping bag along with a small towel to place over my lap when changing as well as a packet of wet wipes. I've never had to change out the appliance away from home yet but good to have one in case. Also keep the extra cathing supplies in the bag.

                The smell though is a bit strong which is offset by a small bottle of M4 deodorizer or spray if home.

                I'd take it easy the first week or so and be prepared for a big discharge of gas and stool coming from the air etc. they may have used to keep everything away while they did the surgery. Also using a wafer barrier around the opening of the flange is highly recommended;it helps stopping leakage. I also use 2" paper tape around the appliance.

                For me, the Imodium made the biggest difference for a more solid stool and the rest of the bowel supplies went out the door except for a small bottle of Senna for just in case. I find extra water and fiber usually does the trick to keep everything going.
                Last edited by Patrick Madsen; 4 Nov 2020, 4:16 AM.

                Comment


                  #54
                  Originally posted by Patrick Madsen View Post

                  No food restrictions what so ever. I had to find a new hobby to take up the time I used to spend sittin' on the pot. And, no worries about needing to find a bathroom or if one is accessible away from home. I can change out my bag in under a minute, at most, if needed. I keep three bags wrapped in two papertowels each inserted in the throwaway bags in my pouch under the chair and also three of them in the door of my van along with extras and an extra appliance if needed in a small canvas shopping bag along with a small towel to place over my lap when changing as well as a packet of wet wipes. I've never had to change out the appliance away from home yet but good to have one in case. Also keep the extra cathing supplies in the bag.

                  The smell though is a bit strong which is offset by a small bottle of M4 deodorizer or spray if home.

                  I'd take it easy the first week or so and be prepared for a big discharge of gas and stool coming from the air etc. they may have used to keep everything away while they did the surgery. Also using a wafer barrier around the opening of the flange is highly recommended;it helps stopping leakage. I also use 2" paper tape around the appliance.

                  For me, the Imodium made the biggest difference for a more solid stool and the rest of the bowel supplies went out the door except for a small bottle of Senna for just in case. I find extra water and fiber usually does the trick to keep everything going.
                  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, which wafer barrier do you use? I've heard good things about the sure seal.
                  C5/6 complete (maybe) circa June 2018

                  Comment


                    #55
                    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 severe, in the range of 102, and I was really sore and experiencing thermal regulation issues in both directions. Barely got any sleep on Tuesday night, in part due to discomfort and in part due to an interest in what in the hell is going on around us, but woke up Wednesday still with the pretty severe fever. I transferred into my chair for the first time that morning, and was just completely floored. No energy, no strength, and tons of discomfort all over my body. I figured I was still recovering from the surgery, but after blood tests and urinalysis came back with no sign of infection, I began to worry.

                    So that's when they ordered the Covid test. You see where this is going. The hospital says they don't think I contracted it during surgery, and that makes sense given how soon after the symptoms started (though obviously they would never suggest that I got it during surgery even if they thought it was true!). But at the same time, I've spent the last 11 weeks in a pretty tightly controlled environment with little exposure to the outside, and with pretty constant testing. So it's a bit of a mystery how I got it, but there's no doubt that I have Covid. Fortunately, sometime last night the fever broke and today I felt much better with a much much lower temperature in the 99 range. Now the only real discomfort I'm dealing with is gastrointestinal, which I hope is normal, and emotional given that all of a sudden I'm in the Covid wing of a hospital during a pandemic that already took the lives of some people close to my high risk self. Some seriously scary stuff, though at least at the moment I'm asymptomatic.
                    C5/6 complete (maybe) circa June 2018

                    Comment


                      #56
                      Wow - that is so unexpected and crazy. Of course that is really scary and I'm so sorry you have to deal with COVID on top of everything. You have been so good about researching and planning every detail of this experience that a shock like getting COVID is really unsettling. But in some ways, this is maybe.... not a terrible thing. After a serious surgery like this a high fever can be a scary sign of a complication of your surgery, and in many ways that would be worse than COVID. So it sounds like your surgery went well without complications. Great! And maybe now that your fever is breaking, fingers crossed, you will do very very well and soon have antibodies that may protect you from getting COVID again.

                      So good luck with the rest of your recovery. Get that incentive spirometer from the nurse or respiratory therapist or whomever you see in the hospital, and practice it like crazy. Learn from the nurse/respiratory therapist the breathing techniques they recommend for clearing your lungs if you have COVID. Get those lungs working, sleep and eat well (protein protein protein and calories for healing!) and recover from that surgery.

                      You will be fine.

                      Comment


                        #57
                        So sorry! How horrible to have gotten COVID in the hospital. Wonder if you were exposed during your pre-operative visits with your surgeon and ostomy nurse.

                        Is the ostomy nurse following you to be sure that the right appliance is working for you, and to continue your teaching on management? It is critical to stay in touch with this expert for the first 3-6 months as your stoma heals and evolves. Your appliance needs, diet, and medications may also may need adjustment with their advice.

                        (KLD)
                        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                          #58
                          I had my an ileostomy a few years ago. I am a user of the two-piece Hollister system. It is a lot easier on the Stoma and surrounding skin than the One-piece disposable system. I love it. Since I am a C6-C7 Quad, my wife changes it every 5-7 days.
                          Sure-Fit Natura Moldable Wafer Durahesive? Skin Barrier
                          with Mold-to-Fit opening and hydrocolloid tape collar
                          SUR FIT Natura? Two Piece High Output Pouch

                          Comment


                          • SCI-Nurse
                            SCI-Nurse commented
                            Editing a comment
                            An ileostomy would not have the same appliance needs as a sigmoid colostomy.

                            (KLD)

                          #59
                          Originally posted by hlh View Post
                          Wow - that is so unexpected and crazy. Of course that is really scary and I'm so sorry you have to deal with COVID on top of everything. You have been so good about researching and planning every detail of this experience that a shock like getting COVID is really unsettling. But in some ways, this is maybe.... not a terrible thing. After a serious surgery like this a high fever can be a scary sign of a complication of your surgery, and in many ways that would be worse than COVID. So it sounds like your surgery went well without complications. Great! And maybe now that your fever is breaking, fingers crossed, you will do very very well and soon have antibodies that may protect you from getting COVID again.

                          So good luck with the rest of your recovery. Get that incentive spirometer from the nurse or respiratory therapist or whomever you see in the hospital, and practice it like crazy. Learn from the nurse/respiratory therapist the breathing techniques they recommend for clearing your lungs if you have COVID. Get those lungs working, sleep and eat well (protein protein protein and calories for healing!) and recover from that surgery.

                          You will be fine.
                          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 after all that downtime I'm really struggling with any range of motion, including sitting upright in my chair. Kind of a disaster as a side effect! I'm just hopeful I can make the most of rehab while I'm here.
                          C5/6 complete (maybe) circa June 2018

                          Comment


                            #60
                            Originally posted by SCI-Nurse View Post
                            So sorry! How horrible to have gotten COVID in the hospital. Wonder if you were exposed during your pre-operative visits with your surgeon and ostomy nurse.

                            Is the ostomy nurse following you to be sure that the right appliance is working for you, and to continue your teaching on management? It is critical to stay in touch with this expert for the first 3-6 months as your stoma heals and evolves. Your appliance needs, diet, and medications may also may need adjustment with their advice.

                            (KLD)
                            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 visited me a couple of times while I was in the hospital, but offered very little in sights that were especially helpful for someone in my condition. I asked him about the plan for following up once I discharged, and he told me that he'd only meet with me a couple of times in the hospital and after that I'd be on my own. Not what I hoped to hear, and I'm pretty nervous about everything I don't know at this point. Fortunately, I did change the wafer and the bag a couple of times in the hospital, they'll admittedly it was a terribly messy process that hopefully doesn't get repeated in the long run. They also have me on a very low fiber diet, so the bag is just filling up with liquid stool and therefore pretty tough to manage cleanly. I sure hope this gets easier, as right now it doesn't feel like I made a great decision. That said, I spent 12 days in the hospital without having to battle nurses to administer a bowel program! That's been the worst part about hospital visits over the last 2 years (nurses telling me that only doctors can do bowel programs, and doctors telling me they don't have time), so I'm definitely pleased.
                            C5/6 complete (maybe) circa June 2018

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