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Thread: Never-ending Bloating and Constipation?

  1. #51
    Quote 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.

  2. #52
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    Quote 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!

  3. #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.

  4. #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.

  5. #55
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    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; 11-14-2019 at 10:04 PM.

  6. #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.

  7. #57
    Quote 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.

  8. #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.

  9. #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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