Severe IBS for several years, nothing works.

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I know this post is really long. I’ve had IBS for several years and I tried to sum up the main events that have led me to where I am today. I still have severe IBS and anyone who would stick with the post and read it all the way through, would have my utmost thanks.

I have had IBS for about 4 to 5 years now. It started my sophomore year of high school. When it started, I would get these really bad stomach cramps, have really bad gas, and have severe diarrhea. I went to my doctor and she thought that I might be lactose intolerant.  I was very young and used to good health, so my constitution for staying away from food wasn’t very good and I only tried going dairy free for about two weeks; this yielded no results. I then got several tests done, including a colonoscopy, and all they found was a little colitis, but they said it was such a small amount, they thought it would go away.  At this point I was sick of the pain, gas, and having the runs all the time, so I decided to give dairy-free another shot. After about a month of being dairy-free a lot of my symptoms improved. My stomach pain practically went away and my stools, although not even close to “normal”, were a lot better and I had the runs a lot less often. These symptoms to me were pretty easy to live with, so I continued my life with the small change of being dairy-free. The next year however my health started to get worse.  I had dislocated my shoulder several times in the previous year and so I got shoulder surgery on my right shoulder. I however, did not want to make my digestive problems worse by taking meds, so I just dealt with the pain. While I was dealing with this pain, I had to sleep heavily on my left shoulder. This was a bad however, because somehow it caused sec ondary impingement in my left shoulder. After this I started realizing that my joint pain had gone up a lot, and not just it the shoulders. My fingers would hurt very badly, along with occasional knee and elbow pain. Some of the worst pain however, was in my shoulder blades. Not long after my joint pain started to get worse, my stomach followed suit. My diarrhea started to get worse, my stomach cramps also got worse, and I started getting severe acid reflux to the point where I couldn’t sleep at night.  Following this, I went back to the hospital. They thought that maybe I had too much acid in my stomach and put me on omeprazole. I took this for a month and all it accomplished was to make my symptoms much worse. At this point I went to a gastroenterologist and he did a endoscopy.  He said that he found mild inflammation in my stomach, but not enough for him to be concerned about. After this, my symptoms continued to worsen. I started to have brown seaman. So I tried visiting a naturopathic doctor. She put me on some supplements to treat leaky gut syndrome. I had little luck with these and I started to get the worst headaches. These headaches were so bad I would lose my balance and sometimes pass out. Well as it turned out, the headaches had nothing to do with my stomach. I had a benign brain tumor called a hemangioblastoma.  I had brain surgery last year in august and thankfully everything went well. After surgery they put me on a steroid called decadron; aka dexamethasone. Once I was on these steroids the weirdest thing happened. All my symptoms went away. When I say all, I mean all… no cramps, no diarrhea, no acid reflex, even my joint pain went away. This was the best thing that had happened to me in years and I remembered what it felt like to feel “normal”. This was all good fun… until I went off the steroids. All my symptoms started to come back. At this point I was diagnosed with VHL (von Hippel-Lindau). The way I understand this disease is that it is a hereditary condition that can cause blood vessel tumors (hemangioblastoma) and there is no correlation to IBS as far as I know. The weird thing about me having this condition is that no one else in my family history has ever been diagnosed with this condition. Well once my symptoms came started to come back, I decided that I’d had enough of this IBS stuff and wanted to at least find a diet that enabled me to live life without these horribly debilitating symptoms. So I did what lots of people with IBS do, I turned to the gaps diet. I started on intro gaps about 4 months ago and not only have I been stuck on the intro diet (broths, with veggies and meats). I have had to remove everything from the broth except meat and salt. I have been on this broth, meat, salt diet for the last two months, but before that the only other thing I had was a few veggies in my broth. I should probably mention that prior to my brain surgery, I had only been eating maybe a thousand calories a day on a good day and now I don’t know what I eat, but probably even less than that. Anyway for the first two days I was on gaps, I had great results, my stomach felt great, no acid reflux and my bowel movements were perfect. After the first two days however, I started to get bloated and my stools were totally random in formation (sometimes okay, other times really bad diarrhea). The only symptom that has remained practically nonexistent is my acid reflux and my joint occurs less often. Whereas before my joint pain was so bad I could hardly sleep at night and it would last 23 out of 24 hours of the day, now it comes and goes; it occurs much less often and I am able to sleep somewhat.  This had led me to believe that I have rheumatoid arthritis or some other auto-immune disorder.  I also forgot to mention that right before I cut back the intro diet, to the ultra-intro diet; I had nose surgery and they put me on 5 days of antibiotics. Since then I have had diarrhea so badly, I may end up going 6-16 times a day. Other days I may go only 1-4 times. Anyway, thank you guts for reading this incredibly long post, and if you have any idea as to what might be causing my IBS, I would be more than grateful for your suggestions. I’m getting really tired at this point, not only physically from the small amount of food I’m eating, but also just worn down from seeing no positive results. At this point, I don’t think the gaps diet is going to work for me and am really interested in what my next step might be; if you have any suggestions please let me know, thank you very much 

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  • Posted

    dear johnbegone

    Sorry about everything you are going through. I don't know what's causing you all this pain and misery but I had something similar happen to me, when it comes to my digestive system that lasted for about a year and at the same time I got prostatis as well. I thought I was dying, lost weight, excessive sweating, bloating, burping, inconsistent stool, mostly constipated etc etc. after doing colonoscopies and many other procedure I remembered that I had gallstones but was told by the doctor not to worry about it if it's not causing me any issues. Well after I tried everything I did a HIDA scan which confirmed that my gallblader was function at a less than 15% capacity which is abnormal . Minute I found that out my gastro recommended I take it out and I did . Ever since the surgery I have been feeling ten times better. No more joint pain, pain in my fingers , etc. I am not saying that is what you have but it is worth looking into as from what I see here and from what i have found out, gallbladder is a reason to many of our digestive issues. I hope this helps. And certainly hope you feel better soon.

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    • Posted

      Thank you very much, that is very interesting. I will definitely talk to my doctor about it and I think I should probably get that scan. No one has ever really mentioned my gall bladder as a possible problem, so I appreciate the input
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  • Posted

    Hey johhn...sorry about your issues I think you can get better go to a health store and get mastic gum. this may help if you take it for two or three months one in the morning and one at night after you eat. It's $15 or so per month. Doctors don't know are won't tell it's not in there books. Look it up on line and get the info on how it works. Good luck and pass it on if you have good results. God bless you...get well soon
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  • Posted

    Hey johhn...sorry about your issues I think you can get better go to a health store and get mastic gum. this may help if you take it for two or three months one in the morning and one at night after you eat. It's $15 or so per month. Doctors don't know are won't tell it's not in there books. Look it up on line and get the info on how it works. Good luck and pass it on if you have good results. God bless you...get well soon
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    • Posted

      One more thing go on a gluten free diet for a month and see if that helps. Have you been checked for celiacs disease. people get it when they're gluten intolerant. That baybe it as well.
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