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Time for a colostomy or ileostomy...

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    Time for a colostomy or ileostomy...

    Since November of 2016 I have been hospitalized for 6-8 ileus' and managed a couple others at home. I'm tired of getting these damn things and while either procedure may not prevent future ileus' from occurring they will make them easier and cleaner to manage. I have only spoke to my NP about this so she arranged an appointment with my GI doctor in two weeks. He no longer does surgery but a younger doctor in his group does (the doctor my NP wanted me to see).

    The main reason that I have waited for so long to do this was out of vanity. But I have been doing bed rest for 6 1/2 years and need to make a change. My bed rest began because I started leaking profusely around my SP catheter. It took a few years to figure out a solution but in those years my butt became as delicate as tissue paper. Anyhow, perhaps not having to lay on a blue chuck pad will allow my butt to heal and make it possible for me to get up again.

    I'm not asking any particular questions but if you have any advice regarding getting a colostomy or ileostomy, let me know. Thanks

    #2
    I have had my colostomy for over 6 years (I wish I had it done when I got injured 30 years ago). Best decision I've ever made! No more 2-4hr bowel routines. A quick 5 minute bag empty or change and I am good to go. You won't regret it!

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      #3
      A colostomy is generally better than an ileostomy for several reasons. Most of your fluids are absorbed in the large intestine (colon), so staying well hydrated is more of a challenge with an ileostomy. A number of vitamins are also absorbed and actually made by the bacteria in your large intestine as well. With an ileostomy, you will generally have much more caustic drainage; if your appliance leaks, you can quickly get skin burning and breakdown. In addition, changing the appliance can be more challenging with an ileostomy because of the constant drainage, and it will have to be emptied more often.

      Remember that your colon also makes mucous even if no longer receiving or discharging stool. Generally it is not completely removed in elective colostomy; that is usually only required if you have bowel cancer or a bowel disease such as ulcertive colitis. So you may need to periodically do a small volume enema to clear out mucous if you still have and intact rectal vault, and screening for bowel cancer on a routine basis may still be needed in your remaining colon.

      On the other hand, if you ileus episodes are due to lack of peristalsis in your large colon, but not in the small bowel, it may be better to take the colon out of the picture by disconnecting it from your GI tract and having an ileostomy done instead.

      (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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        #4
        I have had them high and low (the ileus') but I would prefer a colostomy at the bottom of the ascending colon because that seems to be where most of my pain comes from and where the pooh gets stuck with constipation. My colon is dilated (seen on an xray) and is likely due to megacolon so I don't know if that will factor into bowel removal. Even if the ileus' are in the small intestines, it will be easier to manage them when you don't have to worry about having diarrhea and messing the entire bed up and getting cleaned up.

        I guess the doctor will have the final say, I just want this done, because suppositories rarely work anymore and I am only poohing every 2-3 days instead of my old usual of almost every day. The pain, bloating and aggravation is too much.

        Thanks for the info

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          #5
          .Scott: my colostomy is about 16 years old. Not one regret. My life is much easier and delightful. I too are vain about my appearance, however, I have my pants custom made with a fuller waist area, hence no indication of my colostomy. I use Hollister drainable pouches. They are convenient and comfortable. Super Nurse offered fantastic information, reread her posts several times to absorb her nuggets of knowledge concerning colostomies. You should regain more control over your life—and get your butt out of bed. Another side benefit is you can win bar bets concerning the number of AHs present.

          Ivy Vines
          Last edited by wazabiker; 21 Aug 2020, 3:26 PM.
          You C.A.N.
          Conquer Adversity Now

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            #6
            I have an appointment with my GI doctor on November 20th. However this will be to get a referral to a surgeon.

            Here's my question, assuming that the surgeon feels that the surgery is warranted, about how many visits and or tests will need to be done to prepare for the surgery and visits back to the doctor after the surgery.
            I have a couple skin tears on my butt and I'm trying to plan this out as best that I can beforehand.

            I'm still laying on the chuck pads in case of diarrhea (my bladder leakage problems are pretty much in control now; knock wood) so if I can eliminate bowel accidents, I can go without them and perhaps my butt skin will return to its previous condition before I used them at all.

            Comment


              #7
              Probably just two visits, Any tests in between if needed, and marking by ET nurse for placement which might be done in the hospital. CWO
              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.

              Comment


                #8
                If you haven’t had a colonoscopy recently, they may require it, the day before your surgery or so. And you will have to clean yourself out first (for the surgery too), and consider pressure sore risk during that long process. They wanted me to do mine at home, but I did it at the hospital before the surgery. You have to drink lots of nasty stuff.


                One of your best resources will be your ostomy nurse, WOCN. I met with mine at least once before the surgery, and again in the hospital after surgery for training, and once after surgery to learn how to irrigate (which most people don’t do). A big part of your education is finding out what supplies you need and what works for you (brand, process, etc). That will take a few weeks (about 6 weeks) after the surgery, and you’ll have to be patient with accidents as you learn.


                I think you’ll meet with the surgeon just once before the surgery. And you should at least talk with the anesthesiologist if you care about what drugs they give you, e.g. I told him not to give me versed, and he also skipped fentanyl, which meant I could eat right after surgery and go home sooner.


                I got permission and brought my own memory foam mattress and shower wheelchair to the hospital. They probably won’t be prepared for your specific needs.
                "Cherish your tears. If you can cry, you still have some humanity left, and you are reclaiming more of it." -- David Kelly


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                  #9
                  What is the determining factor for where the surgery is done. Aside from my ileus' my bowels seem to get stuck at the bottom or midway up on the ascending colon. Will the surgeon / ET nurse take what I say about that into the mix or do they look at xray's and scans and say, "x marks the spot," so to speak.

                  I hadn't considered the bowel cleanse but, you gotta do what you gotta do. When I find out which local hospital I need to use, I will arrange a "Dolphin bed"... it's what I usually get when I have to stay when I get an ileus and seems to do okay.

                  If I remember correctly, the average hospital stay is about 5 days after surgery?

                  Comment


                    #10
                    • The surgeon will discuss that with you. The surgeon indicates the plan and posts it for surgery and consult the WOCN. She will mark best placement for what surgeon has indicated but look at how you sit, reach things like that for managing the ostony. CWO
                    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.

                    Comment


                      #11
                      Originally posted by SCI-Nurse View Post
                      • The surgeon will discuss that with you. The surgeon indicates the plan and posts it for surgery and consult the WOCN. She will mark best placement for what surgeon has indicated but look at how you sit, reach things like that for managing the ostony. CWO
                      I was worried about where my left arm, (that I have little use of,) might do something to the appliance, especially in the middle of the night. I guess they'll take that into consideration. Thanks.

                      Comment


                        #12
                        Originally posted by Scott C4/5 View Post

                        I was worried about where my left arm, (that I have little use of,) might do something to the appliance, especially in the middle of the night. I guess they'll take that into consideration.

                        I think the ileostomy is on your right and a colostomy is on your left (or middle if it is transverse?). Since I knew I’d be getting a sigmoid colostomy (on the left), I picked a spot slightly above the underwear elastic line, so that the ostomy bag would be outside my underwear (resting on my leg), and a lot easier for me to change (I am C5/6). I drew an X on my belly (to show the doc what I wanted) and actually wore a wafer for 9 days before the surgery, just to get familiar. We tore my skin when removing it though; I learned it helps to get the wafer wet before removing it. It’s very important that they do the surgery inside some certain abdominal area (I don’t know the name), so you can’t just choose any spot, but I think they have some flexibility regarding stoma location, within the allowed region.

                        Since you don’t know yet what the surgery will be, it makes it harder to plan. But be as proactive as possible.

                        I went home 2 days after surgery (3 days total). The nurse changed the ostomy wafer on the day after surgery, to train me. I think the normal stay is 4 days.

                        I learned that I have to now sleep on my left side (the same side as the colostomy bag), otherwise the wafer leaks at night. Apparently, this is uncommon, according to my local ostomy support group. So regarding the placement of your left arm, you might just have to invent a solution (it’s another reason to wear a wafer and bag now, to prepare). I keep 2 pillows on my chest at night, a small bottom one to create space, and then a regular pillow on top. My left arm can be placed on either pillow. The space is more to maintain catheter drainage though; I think the ostomy drains in spite of pillows.


                        I don’t know anything about an ileus, but I wonder if colostomy irrigation (flushing the colon with water) could prevent them. Irrigation is more common in Europe, so your doc might not be too familiar, but it wouldn’t hurt to ask. But if you have megacolon, irrigation might not work anyway. Irrigation makes sense only for a sigmoid colostomy of course, so you can then go 24 hours with no output, if 24 hrs+ is your transit time.


                        I didn’t want a loop colostomy, but that’s what my surgeon gave me (miscommunication). It means your colon is still connected to your rectum. The advantage is that you can flush the rectum from above if you irrigate, and you don’t need enemas from below. Now I am happy with the loop (had it 6 years), and I irrigate only every 6 months or so.
                        Last edited by dnvrdave; 25 Oct 2020, 4:36 PM.
                        "Cherish your tears. If you can cry, you still have some humanity left, and you are reclaiming more of it." -- David Kelly


                        Comment


                          #13
                          This might be an odd question but if you have a colostomy on your lower descending colon and your bowels aren't moving well, can you put a magic bullet into the stoma to stimulate your bowels to move? Or some other stimulant?


                          I found this with a google search: http://live.nhsggc.org.uk/media/2241...0colostomy.pdf
                          Question is do any of you ever have to stimulate the bowel with a colostomy?
                          Last edited by Scott C4/5; 26 Oct 2020, 5:09 PM.

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                            #14
                            I was finally able to get to my gastrointestinal dr. for a referral to a surgeon. It was the first time being in my wheelchair and going somewhere in a long while. (I went outside in my chair for the first time in 4 years last week). Anyway, I guess they will call me early next week for an appointment to see the surgeon. My gastro doesn't think that I'll have any problems with a lower descending colon stoma.
                            I asked this question on my post above but never received an answer so I'll ask again. If I have a lower descending colon colostomy, can you put a suppository in the stoma to stimulate the bowels to empty? That way it could be changed (the bag), while my caregiver is here or if I were going out and wanted it not to get filled up while you're out somewhere. Hypothetically speaking?

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                              #15
                              Yes!
                              69yo male T12 complete since 1995
                              NW NJ

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