Potentially big news. Possible way to help a lot of people with IBS and maybe IBD. - Your Story - IBS Self Help and Support Group Forums - IBSgroup.org

Jump to content

- - - - -

Potentially big news. Possible way to help a lot of people with IBS and maybe IBD.

  • Please log in to reply
No replies to this topic

#1 Johnnie Dunkum

Johnnie Dunkum

    New Member

  • Members
  • Pip
  • 7 posts

  • IBS Penpal
  • Country:United States

Posted 03 September 2018 - 04:05 PM


I do not want to oversell this, but I went from wishing my life was over to being 90% recovered, and in the best shape of my life in one week. As most of you here probably relate to the fact that the medical industry is broken, and I feel gastroenterology suffers worse than most. Their "script" is all wrong. They missed not only GI inflammation that I believe was Crohn's with Proctitis that compounded my issues greatly, but I kept telling the doctor I felt I had inflammation, but they stuck with IBS and never checked other than the damned CT scans and colonoscopies. I do not want to dismiss all doctors, but all the ones I went to do not seem to have a clue how to deal with anything off the script even a little. All they had to do was a rectal exam to confirm what I felt. If anyone feels like the diagnosis of IBS is wrong for them, or if you have tried everything with no relief, check my post in the link below. 


My eyes were so inflamed, my vision had been affected for years. My rectum was so swollen and inflamed, I thought I had constipation, but I simply was so inflamed I had to force things with laxatives. Once the swelling is gone, I realized I truly had been misdiagnosed and left to suffer for years due to the rinse and repeat script they follow. They ignored mouth ulcers, face rashes, complaints of inflammation, and a family history of Crohn's in my case, so I wonder how many others were misdiagnosed. After a while of telling the doctors all those things, I also came to believe they were not relevant. In retrospect, it is hard to imagine not knowing, but the torture was so bad towards the end, I could barely concentrate on anything and the doctors had convinced me there was nothing physically wrong........basically brainwashing me into being unable to understand my own body anymore. I got to the doctors for them to diagnose things I can't, not to ignore what I tell them that I have now proven to be true. My primary care doctor, which is the only one I trust at all right now, concurs that I have contraindications of IBS. He even noticed the tongue swelling too about a week ago, but I was already on my way to recovery by then. Starting 8/23, everything changed rapidly. 


In any case, I think I came up with a means to help clear the noise from storms of symptoms, provide diagnostic data, and most importantly, provide relief and nutrition for people with IBS and IBD. If you have the same results, it won't really cost you anything, as you would just switch your diet for one week. If you stick to it, I strongly believe most should have positive results if my theories are correct. My theories are based on science, nutrition and my own interpretations, so please take this as an attempt to help and not that I am adverting the latest wonder cure. I do not know if it will work for people as well as it did for me, but that is why I would like people to help prove it out to help legitimize the results. The concept is simple. Huel is free of things that exacerbate IBS and apparently IBD to the point of driving it quickly into remission, but full of enough nutrition to cover all your needs. I still have minor issues, but with the Proctitis gone, the flare-ups are trivial in comparison and follow the Crohn's pattern, as I understand it. I do not know if that is the worst of it, if it is Crohn's, but what I have left has been easy to manage so far. This is the first diet I tried that is low FODMAP, low allergen, gluten free, and anti-inflammatory, that is easy to follow completely in a measured and consistent fashion. That is the genius of it. If you can get all your calories on vegan, that might work too, but there are still some potential issues with that. If you stick to 100% Huel for a week, you should be able to understand more about what it going on, if nothing else. 


Read my story and believe it or don't. I will be the first to admit I went a little crazy the first week, but imagine the worst flare-up you have had, and somehow going from wishing you could put yourself in a coma to feeling better than ever in a few days. It was too much for my mind to even handle at first, after all the doctor visits. I was sending out emails like crazy about how this would change everything, not even fully believing it was real; it made that big of a difference to me. To be honest, I am still dealing with anxiety issues because of the trauma I endured for so long needlessly; I didn’t anticipate that, but it was not until I got better that I knew how bad I had become and how much it took from me. I imagine you all could appreciate how you would feel to find out you were right all this time, but the doctors did not listen or read what I tried to provide them to help me. It is going to take time to sort through all of that and find a way to put it behind me. 


Please read my story and see if it might help you. One big thing the doctors never suggested was an anti-inflammatory diet. I just happened to understand that is what helped when nothing else ever did, and many IBS diets were making the inflammation worse! If you have not tried one, even if you do not try Huel, try an anti-inflammatory diet. I am happily staying on Huel and water for as long as it works for me, so if you are as far down as I was, you can understand it was an easy choice to commit to that and effectively give up traditional food, unless there is a good reason to risk it.


I do believe this is a big deal, but only people suffering as bad as I was can understand what it could mean. If you agree, please try it and share with others. This could be used as a medical diagnostic protocol for a lot of things potentially. Who can follow the diets the doctors suggest? What if they say go on Huel and water for a week, help tell you the calories you need, and then it is up to you to simply stick to it, not decide what to prepare of low FODMAP options and such. I think it is big news, but maybe I am wrong.


If anyone is tight on cash, I can provide a code for $10 off, but I do not want anyone to think I am doing this for referral credit or something. I want to help, because I know how bad the endless torture can be. All I ask is that if it helps you, don't be silent about it. The more people who reach out with success stories, the more it could be validated. The Huel forum also has posting of other success stories too, so check them out. Other people I know are trying it and having positive benefit, but too early to tell how extreme the results will be.


All I know for certain is my biggest problem that cause the suffering was inflammation. I do not know the cause for certain, but once I got better, the dots connected very fast to likely be unmanaged Crohn's. That is my theory, but we will see. I am not sure I even believe the tests anymore. I had a colonoscopy about a month ago, and it was 100% clear of any issues, while I not only had pain, but I now know I had severe rectal swelling. I do not know if that is not checked during a colonoscopy, it the prep somehow hid it, or why it did not show, but I assure you, I had a LOT of swelling down there, on top of the issue ion my descending colon, that I believe to be Crohn’s.


It is a pity I was left to do the analysis on my own so far, as that has been taxing, but I took back ownership of my health issue to do this. The endless loop is broken, and even if I never get a proper diagnosis, I feel better than I have in more years than I can count. I have had to get used to my body again even. It seems crazy, but I am happy to provide any proof I can to anyone who wants it. I vowed to help others if I ever found a solution for myself, so that is what I want to do. 


It may seem hard, but It is only for a week, and if you are like me, you may learn more about your actual condition in that week than in years and tens of thousands of dollars on doctors and tests. 


Good luck and best wishes.



Feel free to contact me with any questions. I would love to be able to help some people, if I can. 



About Us | Contact Us | Advertise With Us | Disclaimer | Terms of Service | Crisis Resources

Irritable Bowel Syndrome |  Inflammatory Bowel Disease |  Crohn's Disease |  Ulcerative Colitis |  Fibromyalgia |  GERD - Reflux Disease

©Copyright 1995-2016 IBS Self Help and Support Group All rights reserved

This website is certified by Health On the Net Foundation. Click to verify. We comply with the HONcode standard for trustworthy health information: verify here