Frustrating few years....
I was certainly pleased to find this website (from an article in the recent issue of Canadian Living magazine). I don't know where to begin with my story. Firstly, I have had ulcerative colitis for approximately 5 years. During this time after an endoscopy, it showed I had portal vein hypertension. Subsequently, I had 3 transjugular liver biopsies and they came back showing nothing, even though the initial diagnosis was cirrhosis of the liver. I had been having blood issues, and after a multitude of tests, I had to have a splenectomy as my spleen was enlarged and causing the blood issues. At first the ct diagnosis was suspected lymphoma. Luckily, that was negative. I had the splenectomy in September of 2011 and recovered quite well from the surgery, until November 2011 at which time I got quite sick and ended up in the hospital. Then I had caught c.diff while hospitalized in Wpg. and it progressed and caused major bowel issues, on top of the colitis; got sepsis when they put in a feeding tube;a major blood clot formed in my liver, I had horrid ascites and had over 4 litres of fluid drained off my abdomen one evening; one lung filled with fluid, it was just one thing after another. Consequently I was ambulanced back to Wpg. where I got sicker and I am lucky to be alive. The surgeon took another wedge biopsy during the surgery and although he said he saw cirrhosis on my liver, again the test came back negative.
Just last week, I had to have surgery to repair a hernia at the splenectomy site and again my surgeon and colleague said they both felt my liver and it was bumpy - indicative again of cirrhosis. Any further testing had been put on hold as I have had so many other issues to deal with - firstly trying to get the colitis in remission. I am 60 years old, not a drinker - just occasionally a glass of wine, no drug use, no hep of any kind, only one sexual partner (hubby) and yet they are still telling me I have cirrohois, yet there is no proof. I am getting so angry when I hear "you also have cirrohois" when I have to see a different dr. ie: pre op doctor. There is no proof; it is strange why the biopsies show nothing? Of course there is the stigma and misconception as to the alcohol factor with the disease but from reading all these stories, it does make me feel better that I am not alone. My surgeon told me the hernia was probably from the colitis and the liver issues; when I bloated, the hernia was very prominent. I am so frustrated with it all. I still don't feel I have any answers. I have tried many kinds of meds for the colitis - Imuran, Remicade,had predisone for a bit; I wonder sometimes if these caused some problems. I am currently on 6-MP and it sure does seem to be helping with the colitis. I should be seeing my gastro doctor now that the surgery is over, and I do wonder what avenues will be pursued now that the surgeon has once again found issues with my liver. I retired from my job 2 years ago after I was so sick. It is a good thing I did, as I am fatigued constantly, always going for some kind of test etc. Thank you for listening. Has anyone else out there had these same kinds of issues with a biopsy coming back negative yet the liver is not normal?