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    #46
    When I saw this topic today, I cringed a bit, then read through the posts to find that my GJ posted about the event he had in November 2018. That event, as it turned out wasn't as benign as it seemed when he wrote about it. I believe his case is pretty rare, a twisted sigmoid colon and 18 inches of redundant colon removed. He had regular PET and CT scans because he was 13 years in remission from non-Hodgkins lymphoma and was current with the 7 year plan suggested to him for colonoscopies. Nothing out of the ordinary ever seen on these tests.

    But I will repost, here, what I wrote about how he died, in case some of you missed it. I don't want to make anyone paranoid or over concerned about bloating and constipation. Most problems are fairly temporary and are resolved with taking a look at fluid intake, diet, activity, etc.

    If you have already read this, sorry to be redundant.

    On Friday, (July 19) morning, GJ awoke with an extremely bloated and rigid belly. As the day progressed he became more and more uncomfortable. He was transported to the ER about 4:00PM, and diagnosed with a volvulus, a twisted sigmoid colon, which created a blockage.. Something like this happened in November just before Thanksgiving, but went undiagnosed because it resolved itself before a CT scan was done and was not evident at the time of the scan given in ER.


    Since admission, he had three procedures, the last one (July 26) resulted in a colostomy.


    I stayed at the hospital, in GJ's room on a roll away bed for these many days. We expected he would be released vey soon, but his condition deteriorated rapidly during the afternoon.


    About 4:30 PM, July 29, GJ had a swallow evaluation to help decide the best way to administer nutrition. The evaluation took about a half hour. It is thought that he aspirated fluid into the lungs. He was having a great deal of trouble keeping the oxygen levels up even though he was on oxygen supplementation. Try as he may be could not get up phlegm without severe coughing and a lot of suctioning. The hospitalist was still on duty and called in a rapid response team to deal with the breathing issues. They were unable to do what GJ needed in the hospital room and took him to ICU.


    In ICU they set him up on a BiPAP which operates as a positive pressure breathing machine, much like a C-PAP that people use for sleep apnea.


    Friday, July 30 the BiPAP breathing system was removed and replaced with a high pressure cannula breathing system. The change released GJ from the BiPAP mask, a medieval instrument of torture. We could resume taking to each other and I could see his grizzly beard. Hard to imagine GJ with a 15 day growth of facial hair.


    The absolute high point of the day was that his medical team decided how to get nutrition into him. An NG (nasogastric) feeding tube was placed that would deliver some high protein, high carbohydrates nutrition. I'm just hazarding a guess, but I'd say he had lost 10-15 pounds, existing on Dextrose and Sodium Chloride IV. Quite a crash diet. Nutrition was delivered 24 hours a day.


    As time passed in the ICU his blood pressure, oxygen and general physical condition were very unpredictable.


    On August 4, he started the day doing pretty well, but that didn't last long. Eventually, the oxygen delivery systems weren't sustaining enough oxygen in body tissues and air flow in his lungs was almost imperceptible. Doctors wanted to intubate and place a trach. GJ said absolutely not, the only way he could then communicate, by lifting his head from the pillow and vehemently shaking his head "no." There was a discussion between me, his doctors and GJ shaking his head in either positive or negative gestures. In labored words, he told the medical staff he was dying, he couldn't live on ventilators, he was tired and didn't have the physical reserves to continue the fight to get well. He told them he was ready to die, no further life sustaining measures and medical heroics.


    Doctors started morphine and anti anxiety medications. In the middle of the afternoon he was transferred out of ICU into a quiet, private room and placed on Comfort Care. Morphine and comfort medications were administered and when he was sedated enough the breathing machines were removed and he was placed on regular hospital oxygen. After about 30 minutes, there were no more signs of respiration and no vital signs. He was pronounced dead at 10:20 PM, August 4.


    He died four days short of his injury day, nearly 37 years ago at age 74.

    Last edited by gjnl; 18 Aug 2019, 10:02 PM.

    Comment


      #47
      I am so sorry. He and yourself have contributed so much this community. You've always been there for so many people and it saddens me to even read any of this. I'm completely bewildered – at this point. I've been told I have IBS-C and then in ileus and then told that I don't have an alias and then that I just have large amounts of air in my stomach and I don't really have constipation. Going to keep asking and plugging away at trying to figure this out but I can't thank you enough are just some of your thoughts.

      You are an important part of the community. Thank you for your thoughts and if contributed to. the current health of so many people. Even just for the right now. The future is. so uncertain

      Comment


        #48
        Originally posted by Chaz19 View Post
        I am so sorry. He and yourself have contributed so much this community. You've always been there for so many people and it saddens me to even read any of this. I'm completely bewildered – at this point. I've been told I have IBS-C and then in ileus and then told that I don't have an alias and then that I just have large amounts of air in my stomach and I don't really have constipation. Going to keep asking and plugging away at trying to figure this out but I can't thank you enough are just some of your thoughts.

        You are an important part of the community. Thank you for your thoughts and if contributed to. the current health of so many people. Even just for the right now. The future is. so uncertain
        GJ and I were not religious people, but we did have a belief in a spirituality of the universe that is best expressed by the original Star Wars sentiment..."The Force Be With You."

        A favorite acronym (most know GJ's feelings about acronyms, but he tolerated this one) EGBOK, Everything's Going (to) Be OK. Actually, I had a bracelet with those initials on it, but alas, lost it a couple of days before GJ passed. Maybe just as well. But generally, I still have a very strong belief, that EGBOK...looking forward without GJ in my life, I have to believe EGBOK. Life is hardly bearable without him. Sorry that my grief is palpable.

        Comment


          #49
          For what it’s worth, I have yet to find any solutions to this ongoing severe bloating problem. I have tried with diligence call
          - Iberogast
          - FODMAP with dairy and gluten and also gluten and dairy free
          – very restricted diet including just approved fruit and vegetables as listed in the above dietary formula, simple forms of protein and even staying with the same exact meal plan day after day for consistency and rule out variables.

          I’ve had the following test however I don’t believe all the results are completely accurate:
          -Ultrasound with fasting
          -CT scan with contrast
          -multiple x-rays
          -weekly examination of four quadrants of the G.I. system with relatively normal sounds


          The test revealed that there is significant “air in my small and lower intestines“ so much so that some of the organs can’t be properly examined via ultrasound. What is mine bending is that I have really no idea what else to try. The tenderness and pain in my abdominal region has fluctuated between extremely sensitive to the touch to moderate discomfort.

          If anyone has any additional even “crazy out there“ thoughts or solutions that work for them Dash please let me know. I will try anything. The pain and now the fact that I have to purchase new clothing due to bloating is overwhelming.

          Still seeing G.I. physician – although I think I may go for alternative assessments because the MGH neurogenic specialist has had no success. It seems that it’s only gotten worse since I had began treatment over the last two years for this supposed IBS with constipation. Any and all thoughts are greatly welcomed.

          Currently, my quality-of-life is very limited due to by G.I. issues, skin ulcers and frequent UTIs of which lead to Peyton levels of chronic pain. My apologies for not updating this thread earlier – I’m having a difficult time managing these issues. Again thanks to all who help and supply their insight or experience.

          For over a decade and a half I did not have this problem and so I’m now looking into other ideas.

          Comment


            #50
            Did something change before these problems began? Perhaps a course of antibiotics? Has your GI doc checked the possibility of SIBO? Small Intestinal bacterial overgrowth. I sympathize. for yers my pain level was grossly elevated by gas problems but I am slowly getting a handle on how to avoid them. It appears the same things do not work for you but keep looking. I am rooting for you!

            Comment


              #51
              Originally posted by Tetracyclone View Post
              Did something change before these problems began? Perhaps a course of antibiotics? Has your GI doc checked the possibility of SIBO? Small Intestinal bacterial overgrowth. I sympathize. for yers my pain level was grossly elevated by gas problems but I am slowly getting a handle on how to avoid them. It appears the same things do not work for you but keep looking. I am rooting for you!
              Thanks for the support. Every little bit makes a difference and I know that I’m not alone with these issues. The pain is what drives me over the edge. I have asked about SIBO multiple times but have been dismissed. At this point I think they should just do a simple stool sample or at least physically examine me with their hands. I don’t think sitting in the chair and being examined for about 2 to 3 minutes is adequate. Not saying I know everything but I feel like I should be transferred into a treatment bed and really examined.
              I don’t trust any of the radiology reports.
              There’s no doubt that our medical system is collapsing.
              The reason I don’t trust is that three years ago my mother had severe abdominal pain for about three months. They did CT scans, x-rays and blood tests and told her that more than likely it was her gallbladder. She was about to have gallbladder surgery when they decided to do a quick ultrasound and found a grapefruit sized tumor surrounding her pancreas.
              It took three different physicians and in multiple tests just to come up with that diagnosis and then basically told her time for hospice. What is even more frightening is that this was done at MGH and she had a top tier insurance plan.
              She was very fit, health-conscious and read prevention magazine weekly to stay on top of her health care. After seeing this and her pass away less than .two months later – I’ve lost faith in our systems.

              Comment


                #52
                Originally posted by Chaz19 View Post
                Thanks for the support. Every little bit makes a difference and I know that I’m not alone with these issues. The pain is what drives me over the edge. I have asked about SIBO multiple times but have been dismissed. At this point I think they should just do a simple stool sample or at least physically examine me with their hands. I don’t think sitting in the chair and being examined for about 2 to 3 minutes is adequate. Not saying I know everything but I feel like I should be transferred into a treatment bed and really examined.
                I don’t trust any of the radiology reports.
                There’s no doubt that our medical system is collapsing.
                The reason I don’t trust is that three years ago my mother had severe abdominal pain for about three months. They did CT scans, x-rays and blood tests and told her that more than likely it was her gallbladder. She was about to have gallbladder surgery when they decided to do a quick ultrasound and found a grapefruit sized tumor surrounding her pancreas.
                It took three different physicians and in multiple tests just to come up with that diagnosis and then basically told her time for hospice. What is even more frightening is that this was done at MGH and she had a top tier insurance plan.
                She was very fit, health-conscious and read prevention magazine weekly to stay on top of her health care. After seeing this and her pass away less than .two months later – I’ve lost faith in our systems.
                You have definitely seen the hairy underbelly of the system. There is no excuse for being ignored about a question like SIBO, but some docs do not "believe in it." You would need to be referred to one that does. And neglecting to bother with something as cheap as an ultrasound is allowing advanced testing to make you stupid. keep up the fight!

                Comment


                  #53
                  Exactly. I’m very frustrated and downright angry at how I’m being treated and Mgh. The best I got after it ultrasound was re-think that prolonged antibiotic use is causing your extreme bloating and we do not recommend doing anything. Time for a second opinion. Without a proper examination I find it very strange that physicians can make diagnoses based upon what you tell them. My thoughts are that they want to get rid of me and I have a good number of reasons why. One of them being the fact that there’s significant ETA violations and I’ve mentioned it.

                  I’m not gonna cry discrimination – but I wonder when it’s important to take a stand against the medical establishment that is passing the buck in basing their decisions upon insurance regulations and optimizing the financial benefits of a decision.

                  Comment


                    #54
                    I can not think of anything to contribute. Did your medicatioins change? Activity level?
                    Have you read the Neurogenic Bowel "pamphlet" posted on this forum?
                    grasping at straws.....
                    ckf
                    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


                      #55
                      Forgive me – – I’m not sure I read correctly. Have they giving you a good, sensitive stool test? I would consider failing to do that to be malpractice. Taking a lot of antibiotics can of course wreak havoc on your gut flora, gave me terrible dysbiosis, which is maybe that acronym you have been using?

                      Your symptoms sound very similar my experience with Cryptosporidium. Bacterial dysbiosis, parasites, even candida overgrowth – – please insist on good stool test. I’m not sure about the comparative efficacy of stool tests, but I would seek one used by a more modern alternative doctor.

                      I can’t remember all the names or which ones are better, but do a search on “comprehensive digestive stool analysis” (CDSA) and perhaps add “with parasitology” – – maybe explore Doctors’ Data, Great Plains, Genova, Great Smokies Lab (vague memories). Don’t let anyone try to tell you these problems come with the territory of a neurologically compromised life.
                      Last edited by Random; 14 Nov 2019, 10:04 PM.

                      Comment


                        #56
                        Hey Random – no they have not given me a very simple stool test.
                        Exactly – I just finished reading "The MicroBiome Solution" and I'm sure that rounds and rounds of antibiotics have destroyed my gut flora. I recently picked up a micronutrient test kit for myself and will update if it is not/or if it is snake oil.

                        It is called Viome.

                        https://www.viome.com/

                        I'm going to try it this week. Check it out if you interested in learning about the trillions of organisms inside your belly.

                        Comment


                          #57
                          Originally posted by Random View Post
                          Forgive me – – I’m not sure I read correctly. Have they giving you a good, sensitive stool test? I would consider failing to do that to be malpractice. Taking a lot of antibiotics can of course wreak havoc on your gut flora, gave me terrible dysbiosis, which is maybe that acronym you have been using?

                          Your symptoms sound very similar my experience with Cryptosporidium. Bacterial dysbiosis, parasites, even candida overgrowth – – please insist on good stool test. I’m not sure about the comparative efficacy of stool tests, but I would seek one used by a more modern alternative doctor.

                          I can’t remember all the names or which ones are better, but do a search on “comprehensive digestive stool analysis” (CDSA) and perhaps add “with parasitology” – – maybe explore Doctors’ Data, Great Plains, Genova, Great Smokies Lab (vague memories). Don’t let anyone try to tell you these problems come with the territory of a neurologically compromised life.
                          Everything that you wrote here falls right in line with my thinking. For a while, my energy and help was so poor that I've been staying away from different aspects of the computer as a communication device. However – I wish I had read your thoughts earlier. THANK YOU. This is something that I'm addressing via patient portal and will follow.

                          Comment


                            #58
                            I?m having major bloating and gas issues and don?t know what to do. I?ve been doing the bowel program every other day in the morning but switched to everyday because it wasn?t relieving my gas at all. My bowel regimen is as follows: 8 extra strength senna the night before, 2 dulcolax stool softeners (red tablets) the night before, 1 dulcolax bisacodyl laxative tablet (orange tablet) the night before. Then the morning of my program I get up at around 6:30am take my blood pressure meds (due to low blood pressure) then at 7am I turn on my left side and insert the magic bullet suppository then I wait 10 minutes then transfer to my shower chair then go into the shower and give myself the 12mg relistor injection. I used to do this every other day then it quit working correctly and I tried every day. It still is not working. I just called my G.I physician and he said to stop the relistor injections and switch to the relistor pill. He wants me to take 1 daily pill in the morning every day. I have never taken the pill nor do I know how long it takes to work and for how long. I know I do not want to be having accidents all day. They have also said for me to start taking the probiotic Align. Do you have any advice for me because I am experiencing gas pains along with the bloating and it is very uncomfortable as well as painful. To give you a little back story I was injured in 2009 in a MVA and broke my neck at C6/C7. I?ve been diagnosed with a syrinx and that?s when I had my 2nd neck surgery. I also had the Mitrofanoff Procedure So I could cath through my lower abdominal region because of my limited hand function and they also did a bladder augmentation as well. Then I had a bowel blockage that nearly took my life when I went septic and they had to do another surgery to drain my colon. That was when they put me on the relistor and it worked great for a few years till a couple months ago when I landed back in the hospital with an Ileus. Now I?m having severe bloating and I?m not emptying out like I should and don?t know what to do. Do you know how relistor works or anything that could help me that I could bring to my doctors attention or anything I could try at home.

                            Comment


                              #59
                              You are on a huge amount of stimulants! Long term use of these can significantly increase your risks for developing obstructive megacolon with time.

                              Gas is rarely related to medications, but much more to diet. Do you keep a diet log so you try to identify foods that are problematic? Tried an elimination diet where you cut out one of these foods at a time for a week to see if it is the culprit?

                              Do you have mostly bowel gas or stomach gas, or both? Have you tried taking Beano (which works best for bowel gas) orsimethicone (which works best for stomach gas)? Have you tried taking medicinal charcoal capsules? The later much be coordinated with your other meds as it can interfere with absorption of some; work with your pharmacist on this.

                              (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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