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18 years since surgery / still undiagnosed :-(

Location
New Zealand
Hi Team
This is my first time joining any forum or discussion about my illness. Brief history: Had digestion issues most of my life (now 48y/o). As a child, constant abdominal pain - after a few endoscopies, told it was 'growing pains'. Got worse as a young adult, eventually resulting in surgery 18 years ago (Nissen Fundoplication) and told had IBS. Although laparoscopic to begin with, ended up being 5 hours in open surgery. Results not good, and appears to have pushed the illness from the higher digestive tract into the lower tract as well. Have been taking Amitriptyline,Omeprazole and between 10 to 15 Diastop every day for last 18 years (most in one day of 50). Six months ago I saw a different doctor (my regular Dr was on leave) who suggested I was Lactose intolerant and need to reduce the amount of meds. Went into 'remission' after lactose free for a few weeks, then all symptoms returned. Saw another doctor who suggested removing Gluten and stop the Diastop. Again, symptoms stopped for a few weeks, then all came back again. These new doctors said we must stop treating the symptoms and treat the cause. My Dr said in response to my blood and stool tests - that he is 95% sure of IBD (and removed IBS from my medical chart), and now waiting for more endoscopies (had around 10 in total), CAT scan, Pill Cam and biopsies.

Anyway, after a lifetime of pain and chronic diarrhea, really hoping for some relief, but also scared that no cause or diagnosis will be made. Appears that my condition can be controlled by diet, but only if I remove pretty much all foods, and this has an adverse affect upon my weight loss.

I look forward to getting to know many of you, especially since we have some medical challenges in common.
 
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Welcome to the forum. I am sorry for all you have had to go through and to still have no definitive answers.

This forum is a great place for info as well as for support.

We have a Diet Forum(<--click here) you may want to browse through, many members have posted their experiences with diets like Elemental, SCD, Elimination, Paleo etc. You might find some helpful info in there.

We also have an Undiagnosed Club (<--click here) with members who are still on their journey to diagnosis, very compassionate and supportive and I think it helps to feel you aren't going through it all alone.

I hope your latest tests give you some results so that you can receive treatment and get to feeling better.
 
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