This March I went to my primary doctor for a routine check up, I felt very tired and had lost a few pounds, I weighed 82 pounds. The blood tests found elevated liver enzymes and I was told to see a GI doctor.
He did further lab tests where he found besides the elevated liver enzymes I had elevated anti smooth body antibodies. He diagnosed me with autoimmune hepatitis, my liver doesn't like me and it' fighting itself. I told him I had a colonoscopy years ago which showed microscopic colitis he gave me Entocort to help with the intermittent diarrhea, it also has been shown to help autoimmune hepatitis, so hopefully it would treat both problems. He ordered more blood tests in a few weeks to see if the liver enzymes were lower.
The Entocort worked great for the diarrhea, I had more energy, I was eating better and gaining weight. It also brought down my AST and ALT levels, my liver enzyme numbers were improving!
A few weeks after starting the Entocort I got an oral yeast infection, My whole mouth was covered with a white coating, my mom read this could be a side effect of the Entocort, so she called the GI doctor and he started me on an flucozonole, an antifungal medication. I 've had a history of getting vaginal yeast infections from my crummy immune system, but never had a oral one before. This all happened in April. I had a couple blood tests in the coming weeks and my liver enzymes were not perfect, but down from the first ones. I was feeling pretty good, and was still gaining weight. I set a goal to reach 92 lbs before we went on vacation at the end of August.
My mom and I went up to Orlando for a few days to go to Universal Islands of Adventure for some fun in May. Food was tasting metallic, my mom looked in my mouth and I had another yeast infection,and went on flucozonole again.
In July I started to get very sharp pains on my right side, with the pain going to my back, it lasted a couple of hours, then went away, we happened to have an appointment with the GI doc the next day, he ordered a ultrasound of gallbladder, liver and pancreas, I knew I had gallstones from a ultrasound a couple of years ago, but never had any problems. It did show stones and I kept having pain on the right side, not as bad as the first time, but it bothered me every day. The doc ordered an Endoscopy also because I mentioned my stools looked a little darker than usual. I had a MRCP which shows if there are any stones blocking the common bile ducts. NO stones in the ducts, but probably abound 25 small stones in the GB. And through the MRI they saw the bottom of my lungs and there were some densities they needed to check out further. In the interim I had the Endoscopy that showed I had a polyp in my stomach and what he felt was yeast infection in my lower esohagus, and took a biopsy of both areas.
The pulmonologist ordered a CT chest. I saw him the same day I had the Endoscpy for the results of the CT. He felt it was nothing too serious, since I do aspirate a little when I drink, he said sometimes cells can build up over something that was aspirated you can see this, and since I wasn't having any symptoms of a lung infection, he felt no immediate treatment was needed, but if I developed fever or shortness of breath to get right in for treatment. When we left his office, my mom asked for a copy of the report, she read it when we got home and it mentioned the lung infiltrates could also be a result of a FUNGAL INFECTION.
My GI doc called a couple of days later with the biopsy results and said the polyp in the stomach was an adenoma with moderate dysplasia,and must come out. The esophagus did showed a yeast infection which I knew already since I had another oral yeast infection. I'm back on flucozonole for that. My mom told the GI doc this was the third oral yeast infection since being on the Entocort, and the Ct report mentioned possible fungal infection in the lungs, if that was the case, the same antifungal might help the chest too. Here's hoping on that one.
Three days ago I got very itchy and got a rash all over my abdomen, by that night the rash was all over my back also. I didn't eat anything I never had before, no new detergents, no new ANYTHING! The next day my mom remembered that my old pediatrician told her that only kid that he saw that had Chicken pox twice was another kid he treated with AT.
By the next day, the rash started to form a few little pustules, yes it certain ly did look like chicken pox, and was itching like CRAZY.
That night the GI doc called and said since I did have a polyp in the stomach, and need another endoscopy to remove it it would be smart to do a colonoscopy at the same time. She told him that I probably have chicken pox now. I am to stop the Entocort. It is a immunosuppressant, that probably giving me all the yeast infections. Maybe it is why the chicken pox started. He wanted me to see my primary for a confirmation that what I had was chicken pox.
My mom didn't want to take me to the primary's office since I'm probably contagious, so she took pictures with her phone, he looked at them, and felt they definantly looked liked chicken pox and wrote a RX for Acyclivor, a antiviral medication to help lessen the effects of the chicken pox.
My itchiness is getting better,and the pox are not spreading any more, I got some on my arms and legs, but it seems like this might be a mild case, like the one I had when I was a kid. My scopes are set up for about 1 1/2 weeks away, as long as the chicken pox are not in a contagious stage anymore.
During all this, other lab tests showed that I have elevated lipase and amylase levels. This means I have pancreatitis. This is most likely from the gallbladder stones. My GI doc feels like the GB will have to come out.
I met with a surgeon who says he would removed the Gallbladder laporoscopically, I would have to stay overnight in the hospital, be a little sore for a few days. But all this is on hold until the polyp it removed from the stomach and the pathology report is OK. That is where everything stands today, but the way everything is popping up, who knows what tomorrow brings, we're going one day at a time.
The one good thing through all this, is that I've finally reached my goal of 92 pounds, This is the most I've weighed in the last 20 years
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I am a A-T mum and had my gall bladder removed the same way about 1 year ago. I was surprised how painful it was after surgery. I will say I was glad I had it done though. Good luck with all curren issues and hope they are all sorted soon, take care, Tina x
ReplyDeleteHi Court, I just started following your blog and I really love that you are keeping people informed. I have a niece that has A-T, she is 8 years old. We are still learning a lot about A-T. Thank you so much for doing this blog. I will be praying for you. My nieces name is Emersyn Rowles and she lives in Lewiston, ME. Thank you again. Angie Broad
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