Dealing with Ehlers-Danlos Syndrome (EDS) comes with a host of gastrointestinal (GI) problems. For as long as I can remember, I have struggled to tolerate a variety of foods. In fact, junk food was pretty much all my GI tract could handle. Unfortunately, being on chronic opioids only makes things worse by slowing down my GI function. Despite this, I find it nearly impossible to do my daily tasks without these necessary medications.
To add to my struggles, I frequently experience intense, burning stomach pains, which are difficult to diagnose as either stomach or intestinal issues. Despite seeking medical help from multiple GI doctors, I have yet to receive any definitive answers or solutions. Most have suggested taking acid blockers like a Proton pump inhibitor (such as Nexium) or an H2 blocker like Pepcid. However, even after being on these medications for months, I have seen no improvement.
I have already undergone a colonoscopy and upper endoscopy, yet these tests have failed to reveal any significant underlying issues. The colonoscopy showed nothing, and the endoscopy only revealed some gastritis, which may have been caused by H. Pylori. I underwent treatment for the H. Pylori (as best as possible) but found it difficult to tolerate most of the prescribed antibiotics.
Unfortunately, the medical testing process has also been challenging, as it has been difficult to get my doctors to send stool samples to my house for analysis. I am also concerned about delayed gastric emptying, which is common among those with EDS. However, as I do not experience a lot of nausea and don't get full very quickly, I don't think this is my main issue.
I wonder if my use of NSAIDs (although below the maximum allowable limit) may have led to small intestine ulcers, which could explain my ongoing discomfort. However, even if this is the case, the treatment is yet another PPI, which I am already taking.
My latest GI doctor has been more helpful in listening to my concerns and in implementing treatments based on my recommendations. After discussing the possibility of colitis, we attempted a course of mesalamine suppositories, which unfortunately made things worse. I also asked about small intestine bacterial overgrowth (SIBO), and my doctor thought it might be beneficial to try a two-week treatment of rifaximin. Unfortunately, the first few days were particularly rough, and I was surprised to find that killing off the bacteria in my gut only made my pain worse.
Now, I am trying to figure out how to repopulate my gut with good bacteria, but there seem to be no clear instructions. While I have tried various probiotics, they all feel relatively similar. Before starting the rifaximin treatment, I had some success with IBgard, which contains peppermint oil and seemed to help with the burning and other stomach issues. I also have had some success with Culturelle IBS Complete, a prebiotic supplement made from oligosaccharides derived from breast milk.
Overall, living with EDS and its associated GI issues has been incredibly difficult. Despite trying numerous treatments and supplements, relief remains elusive. However, I won't give up trying new treatments in hopes of finally finding a way to manage my pain and discomfort..
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