More research needed for SIBO and liver/digestive issues

[DebbieJones]

In 2015 I had an open resection of the liver for a tumor that continued to grow and began to show characteristics of carcinoma, however found to be a fnh. I was experiencing significant issues with digestion, exhaustion, foggy head, pain so on... symptoms were debilitating (began in 2011). I went from being very fit (Kung Fu), to basically being unable to do anything. At the same time I was referred to a surgeon for symptoms that were associated with my bowel. It all started with what was believed to be medication induced colitis after bleeding from the Bowel, followed by poor digestion. An abnormally large gall stone was found (resected in 2012). I was banging my head against the wall as despite tests, there were no answers. I now know there was obviously no dialogue between the liver surgeon and bowel. I had a colostomy in the January, then resection of liver in September over 30% being removed (2015) and 4 years on was still experiencing the same symptoms, except now with a colostomy! I had never been referred to a gastroenterologist until this year, and before I demand to see one in February, the bowel surgeon had referred me for an illiostomy to remove the large intestine!! I said that I would not consider this until I saw the Gastroenterologist. After I was referred the gastroenterologist, he sent me for a hydrogen breath test which was positive for SIBO (small intestine bacterial overgrowth) he told me that it can take time, but this could easily be treated with antibiotics, however due to so many different bacteria in the large bowel, it's trial and error to find the right type of antibiotic to treat the bacteria that has gone into the small intestine. He even said that once he gets my digestive system back on track would recommend a reversal. This floored me as I was told it was an end colostomy!

Well I have just finished a course of antibiotics this week, which (touch wood) has absolutely changed my life...I could not tolerate any fruit or vegetables cooked or uncooked, amongst other things, with toleration geared towards carbohydrates, putting on about 8 stone as a consequence. Now in just over 2 weeks I can eat fruit and vegetables, in addition to salad and almost lost a stone. I am full of energy, dont feel low in mood, able to concentrate, no pain and my skin is clear. I am waiting to see Gastroenterologist again, and living in hope my colostomy can be reversed..

My research following has shown links between liver complications including carcinoma, so I wondering if the SIBO was accountable for the fnh growing and showing characteristics of carcinoma? The liver specialist said at the time, my situation was rare as it is normally linked to anabolic steroids or contraceptive pills. Obviously I was not taking anabolic steroids nor taking contraceptive pills, stopping these at 16 years as I could not tolerate them consequently was sterilised at 21 ( now 47).

It appears SIBO has not been hugely researched at this time, and I think this should definitely be looked into, as it appears I have gone through a colostomy and liver resection, when I could have been treated with antibiotics, not knowing if the FNH would have shrunk itself. My advice is if your FNH is symptomatic, ask for a hydrogen breath test to rule out SIBO, as I have also seen research to say that fnh can also reduce in size.