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Persistent IBS-C after 3 years of hookworm


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Hi everyone,

I'm really grateful to have found this community, and hope I can be supportive to everyone else struggling in here. I've had a long road with IBS-C (as have many folks here it seems) and my boyfriend finally suggested I look for a support group, as so much of the suffering with this condition comes from feeling like you're the ONLY one who can't eat normal food, and live a normal life among your friends and family. I've moved back and forth between the U.S. and the Middle East since college, and with one bout of food poisoning and another, picked up an IBS-C problem that I just can't seem to heal. After two colonoscopies, upper endoscopies, and a pill camera, my gastroenterologist in the U.S. finally caught an image of several large worms living in my Ileum in 2018. Unfortunately they misdiagnosed the type of parasite, and it took another year or so to finally get treated for hookworm, which seemed to eliminate my really severe symptoms (constant exhaustion, exercise intolerance, severe stomach pain, etc). Now I'm just dealing with the post-infectious IBS and am happy to say that at least linzesse has helped (i way over-did it on the sennosides for years, so stimulant laxatives are an absolute non-starter at this point). 

The thing I think is hard, and I'd love to know if other people struggle with this, is that I also deal with depression/anxiety and the digestive problems have launched a really vicious cycle with those. In the years that I had to stop exercising because of the hookworm, I got really depressed (exercise had been a really important part of mental health maintenance). Now I'm doing better, but on days when I'm really bloated or constipated, it can be really hard to get the exercise in. And of course, you don't feel like going out and socializing when your stomach is acting up, and that can also be isolating. Would really like to hear how others have coped with the back and forth between mental health issues and their gut. I'm trying my best with the medications, yoga, meditation, running whenever I can, and diet, but sometimes it feels like nothing you do is ever enough to prevent a flare up. Just feeling pretty discouraged, but hopeful about joining this support group. 


Thank you for listening and take care!

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Jeffrey Roberts

Dear Leslie,

Welcome to our community and thanks for sharing your story.

I can relate to the isolation that comes with IBS. It sounds like you realize how important it is to push ourselves a little to try and go out and socialize despite our stomach's acting up. It's so helpful for our mental well being to try and live as normal a life as possible. Some people live with the discomfort of IBS and never see a doctor about it. You wonder if they are in denial or they think that's normal? You know what is normal and we actively encourage people to live as normal a life as possible. BUT, we understand when your flaring and can't do those things. IBS waxes and wanes so try to roll with it and take advantage of the symptom-free days.


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