Nissen Fundoplication (open) 18 years ago - still chronic/acute - still looking for Dx.

So pleased to have found this forum - with people who understand and care 18 years ago I had a Nissen Fundoplication (the surgeon tried lapara, but after 4 hours needed to open abdomin) for Motility disorder, GERD and Hiatus Hernia, and while the involuntary vomiting and reflux stopped immediately (although still on 80mg Omepresole), I have had chronic diarrhoea, nausea, cramps and fatigue every day since, with several hopsital admissions for blockages (last one for 2 weeks, just a week ago). All my tests come back clear for IBD (Barrium, CT, Xray, CAT, Endoscopy, biopsies). The GI Specialist said there is nothing they can do to help me, and people like me just have to 'continue living a miserable life!" (AKA, the state funded hospital doesn't have the resources to Dx what is wrong with me). I am on approx 20 to 30 diastop per day, plus Amytirip and Quetipine, but my GP says I must come of the Diastop as it is having bad side effects. SO - I've been doing a lot of research since coming out of hospital last week, and are suspecting Dumping Syndrome as the culprit. As soon as I was home from the Fundoplication 18 years ago, I knew something was seriously wrong! The gas and water that poured through my small intestine directly after eating was TERRIBLE. Still is! Anyway, I honestly look forward to hearing the experiences of others, and maybe contributing some of the journey I've had with living with the after affects of a Nissen Fundoplication for 18 years - both good and bad. Cheers. Rog

Post Edited (Rev. Rog <*}}}><) : 8/26/2013 12:30:16 AM (GMT-6)

Hi Bill. Really nice hearing from you, and exactly why I wanted to join this forum. I haven't tired those meds yet, and aren't sure if they are available in NZ. Partly why I have not tried different medications, is because for the last 18 years my Dr(s) have been telling me I have IBS and there is nothing they can do to help me. I recognise the reality and seriousness of IBS, but to be honest - sometimes it can be a name Drs give when they don't really know what the problem is, and aren't prepared to find out! However, my stool tests all show a high Calprotectin count, which is an indication of inflammation. Not once has any of the Drs or GI Specialists even suggested there is something called Dumping Syndrome, or that it can be a complication of a NF. State hospital care is free in NZ, but the still don't have the budget to try and diagnose what is wrong with me (and surgeons are only interested if there is something to chop or cut), and I accept that, so are paying for a private GI appointment in a couple of weeks. From what I understand, there are two medications I want to inquire about their availability in NZ, Acarbose and especially Octreotide. I have tried every possible diet over the last 18 years, lactose free, Low Fod Map, gluten free, low carb and sugar. They seem to slow my bowel down for around a week, and then all symptoms return with a vengeance. I will also ask the GI specialist about the possibility for a PICC line for TPN, even for a few months to give me some relief and attempt to re-gain some weight. No, haven't had GB removed. Blockages are twisting and distension that resolve after NBM for several days and pain relief, but even Morphine doesn't help when acute. How long ago did you have your NF, Bill? Rog

Post Edited (Rev. Rog <*}}}><) : 8/26/2013 1:27:37 AM (GMT-6)

Quick update: Saw my regular GP doctor yesterday, as I have bronchitis (again!). We also talked about my chronic intestinal symptoms, and I asked him about the possibility of Dumping Syndrome from my Nissen Fundoplication. He said "Yes, absolutely!" I was surprised at his reply, and I commented that no-one in the 18 years since surgery - had even mentioned the name Dumping Syndrome to me. That surprised him even more. His comment was that complications from the Nissen is the reason they avoid the surgery at all costs in NZ now. I only came across Dumping Syndrome two weeks ago after being discharged from hospital, and I Googled "Causes of long-term chronic diarrhoea", and it came up with DS after NF.

I'm disappointed at the doctors for never telling me this, and to be honest, disappointed in myself for never having researched it further. 18 years ago the Internet wasn't like it is today, and I didn't have access to the information that is available today. For those reasons, I just accepted my illness and symptoms and trusted the doctors.

Oh well, I'm feeling a bit more enthusiastic about the future, and are paying to see a private GI specialist in 10 days time