Crohn's Disease Forum » Your Story » Resolved life time GI problem


02-08-2019, 02:51 PM   #1
boprn
 
Join Date: Feb 2019
Resolved life time GI problem

I joined this site to make this post, and I hope it helps.


My story has been resolved, and there is a 40% chance it is your story too. This will be a bit lengthy, but the purpose of this post is to give information that may help resolve or alleviate GI symptoms people may be having that are similar to what I had. A little history about me: I have been a RN for 25 years, specializing in CCUs (cardiac) for the first part of my career, and the remainder in psychiatric hospitals and forensic psychiatric facilities. I am 56 years old, and suffered from birth with GI problems so severe that my parents were informed that I would die within 2 months of being born - they even took out an insurance policy to cover funeral costs, it was that bad. Since I managed to survive those first two months, I was 'blessed' with poor health and accepted it as 'normal'. I would go to have an annual physical and be asked the usual questions, and it came to a point that I would never even mention the constant pain in my abdomen, the diarrhea, the bloating, and so on. Prior to becoming a RN (at age 31), I was a telecom engineer. It is important because engineers are exacting, and that would play a role in resolving my illness 30 years later. It taught me to keep exacting records, so I kept detailed records of what I ate, symptoms, and so on. As I got older my GI problems got worse, and discussing it with my father I found he had some of the same issues, but not as severe. I was now a RN, and of course armed with the info of family history of the same GI problem and some medical knowledge, I thought - there might be something that can be done. I started studying everything I could regarding my father's symptoms and my own. The more I dug, the more complicated it got - there is a lot of people having GI issues, and a lot of forums, and a lot of opinions and information due to this. Obviously everybody is trying to help each other out, but the overload of info took me a step or two back (I'm sure many here have experienced this), instead of forward in my pursuit of perhaps 'curing' myself. At age 54 I had to have my gall bladder removed, my father had his removed just about a year before I had mine removed (at age 73). After he had his gall bladder removed, all his symptoms went away - cured from decades of GI problems. After I had my gall bladder removed I had a week of zero problems, I thought I was cured - but then the problems crept back. I was very disappointed, but had a couple of more clues. Determined to fix the issue, I decided to remove the GI docs from the equation in resolving the problem. I told my primary care provider (a nurse practitioner) that she and I could figure this out if she was willing to work with me. She somewhat reluctantly said yes. I explained to her I had pieced together a broad theory on what was happening based off just the few clues above, and symptoms I had - and I ended up being right. So, on to some of the symptoms: a dozen BMs a day, eating healthy foods made it worse (clue), constant gut pain, craving carbs (clue), slight pancreatitis (clue), hard gut/beer gut appearance (clue), moody, eating carb diet made symptoms better (clue), taking a LOT of probiotics (VSL#3) made it better, tapering probiotics made it worse (clue). I had already done a fructose tolerance and other tests with the GI doc - they proved useless, and even misleading, further complicating narrowing down what was going on. I had enough info for my theory to present a unique plan (unique as far as I know) to my primary care provider. I explained to her that I believed I had 'bile acid malabsorption' and that the bile was causing not only the pain and diarrhea, but altering the flora of my gut from what would be considered normal. 'Good' flora do not necessarily like the acidic environment, but carb loving flora don't mind it as much. This would predispose a person to crave carbs, as carb loving flora become predominate, and decrease the flora that deal with proteins and fats making a person have difficulty processing 'healthy' foods (keeping this simple). The unabsorbed bile causes pain further down the GI trace and diarrhea obviously. My plan of action was to kill ALL gut flora, take a bile acid sequestrant, and reestablish flora with VSL#3 in large doses. She reluctantly agreed, and I did a full run of Neomycin as if I was going to have bowel surgery, and took VSL#3 while taking the Neo. After completing the Neo, I started on Cholestyramine and kept taking the VSL#3. After 56 years of suffering with GI problems they were gone. I asked to have the Cholestyramine changed to Welchol after about a month. Welchol is much easier to take, as it is a pill vs the Cholestyramine powder. That said, the Cholestyrmaine is key to this, as it is a great at binding bile. Studies, done outside the U.S., have indicated that between 30%-50% of these types of GI problems are bile acid malabsorption...hence the " there is a 40% chance it is your story too". My gut flora is now completely normal post two months of my experiment, I no longer have pain (as in zero pain), completely normal BMs, have lost 30 pounds (inflammation), my gut is gone, I can eat healthy foods, no pancreatitis, mentally in a better place. Current meds: VSL#3 qAM, WelChol qAM and before each meal, or if eating something like fries or potato chips (the entire diet isn't exactly helthy....), a MVI qAM. The most often cited side effect from bile acid sequestrants is constipation, so have a bottle of docusate sodium available should you decide to try this and have that problem. Gut flora took about a month to change to what healthy normal gut flora should be. I take the VSL#3 still simply because I still have capsules left over. There is quite a bit more to this, but this was long winded enough as it is. This is what worked for me, and took awhile to figure out. Healthiest I have been in my life, by far, and looking forward to the future. Hope this is helpful to someone who is suffering with similar symptoms, and anybody is welcome to ask questions.
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