I've talked about being on Entocort for my autoimmune hepatitis and microscopic colitis already, but this is an update about the side effects I've had from it. I started to look a linebacker frpm the Chicago Bears. My face became very full and round, it's actually called Cushings syndrome, it's from high levels of cortisol. I also have EXTREME sweats where I feel like Nba player after the playoffs. My face began growing hair where it never did before, I always had a light mushtache, but it got very dark, I even started getting hair on my hands. I kept kept getting oral yeast infection every 4-6 weeks and then had to take Fluconozole to stop them. I started gaining weight which isn't a bad thing. For years I was weighing about 84 lbs, but I zoomed up tp 97. I have an increased appetite and am out eating my Dad at dinner. ( The caramel frappacinos sure are helping) My Doctor then cut the Entocort dosage in half and the side effects began to lessen My white blood level count became very high, so I was sent to a Hematologist to make sure there were no signs of leukemia, and all of those tests came back fine. My liver numbers are back to normal so my Doctor may cut back the dosage back again, I hope I can keep the weight on & that my colitis doesn't get bad again.
I had a follow up Endoscopy because on the first one they found a growth with moderate dysplasia which could be capable of turning to Cancer. This scope results were much better, that growth did not come back, but I did have a yeast infection at the bottom of my esophagus reaching almost all the way up to my throat, so more Fluconozole for me, at least the Doctor did not give me the swish and swallow which tastest like rotten bananas to me.
I'm having more trouble doing physical things. My hand strength is getting weaker,and my hands are starting to have a concave look to them, it's harder to grasp things, even harder to hold a cup. My back and neck are weaker and I get a lot of pain. My hand and legs are getting muscle cramps now, and it's getting harder to straighten my legs because of tightness in my tendons.
My Courtney spirit will never relinquish, you've got to keep on going day to day. When someone acts like I'm incapable of doing something, I usually end up surprising them (and sometimes myself too)
Monday, June 9, 2014
Thursday, June 5, 2014
ability
I've lost or I'm loosing the ability to walk or stand, feed myself, use the phone (cell phones included), use the TV remote, use the micrwave, brush my teeth, do my hair, use the computer, write & type. I'm even loosing the ability to bend my legs. Also it use to be it was hard to pick up pills, chips, mNms, & coins basically anything smaller than a peanut and thinner than a piece of paper. Now its getting hard for me to grasp things too, thin like a cup, silverware, dishes, & the joy stick on my wheelchair. It's to pick and hold a piece of fruit or a piece of candy.
Everyday it seems I find something new thats getting a little harder. Tings may be getting harder but we always figure out a way to get the job done.
Sometimes I feel like a 2 year old with all the help I need.
Everyday it seems I find something new thats getting a little harder. Tings may be getting harder but we always figure out a way to get the job done.
Sometimes I feel like a 2 year old with all the help I need.
Thursday, February 6, 2014
AT advocate
I would love to be an AT advocator. When I was in middle school I tried writing a book about my life & experiences but it became to overwhelming. I even tried emailing thev Oprah, Dr. Phill, Dr.Oz & the Andrson shows tring to tell my story. I also came up with a movie & TV show idea. I remember in high school all the kids were about my disorder, so I gave a speech about it and the class was sonly an hour I could talked about AT for 2-3 hours. I enjoy sharing my life experiences and giving people an education on AT.
Tuesday, October 1, 2013
BATHROOMS
Well we went on vacation last month, it was a road trip from Florida to Chicago, it was great seeing the family, but one word of caution. We travel with a dog, so we just make gas stops and fast food drive thru for lunches. Way too hot to leave our dog, Vinnie in the car if we go into a restaurant. When we stop off the interstate, some of the fast food places are older, so they weren't built after the ADA regulations, and the bathrooms are retrofitted for wheelchairs.They might work if you're in a wheelchair, and don't need help from anyone for anything & are totally capable of transferring by yourself, but I need some help to get my clothes up & down, and turning about face to get on toilet. This means my mom has to leave the door open so she can fit it to help me with what I need. Guess you have to throw inhibitions out the window, thankfully the bathrooms weren't too busy while we were in there.
And there is the matter of those darn huge toilet paper rolls, that are harder than heck to get the paper off of ,and they are so low down, I almost fall off the toilet reaching down for paper.
My regulation for bathrooms is about 5'x5'.
And there is the matter of those darn huge toilet paper rolls, that are harder than heck to get the paper off of ,and they are so low down, I almost fall off the toilet reaching down for paper.
My regulation for bathrooms is about 5'x5'.
Saturday, August 10, 2013
medical update
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
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
Tuesday, May 14, 2013
bathroom problems
About 8 years ago I had a colonoscopy that showed microscopic colitis, the Doctor I saw at that time just told me to use Pepto-bismoll or immodium as I needed it. All that time I went though bouts of bloating and diarrhea, and was always uncomfortable.
I had labwork done for a routine checkup a couple of months ago and it showed that I had elevated liver enzymes, I was told to see a G.I. doctor. He ran further tests, one of them being anti-smooth muscle antibodies. With the elevated liver enzymes and elevated anti-smooth muscle antibodies, I was told I had autoimmune hepatitis.
I have had other autoimmune problems. I had alopecia aereata when I was younger, I have vitiligo which started about 23 years ago, and has progressed to where I just have a few small areas of skin that still have pigmentation. The last couple of years I have been getting a lot of yeast infections.
I was given Entocort for the colitis, which has given me relief from diarrhea for the first time in about 10 years. There are studies that show Entocort also helps with autoimmune hepatitis. I had liver, and gallbladder ultrasounds and the liver looked OK, but they found some gallstones, but I have no symptoms, and they are leaving that alone for now. My doctor then said I may have to have a liver biopsy, but wanted to run the lab tests again after I was on the Entocort for a few weeks.
The new lab tests showed my liver enzymes went down significantly, but my antismooth body enzymes are about the same. He said this pretty much confirms the autoimmune hepatitis diagnosis.
Usually prednisone is used for the hepatitis, but since this is a immunosupressant drug, it could harm more than help me, especially if I get more upper respiratory infections. After yet another lab test, my liver enzymes are doing good, so I am staying on one Entocort daily, and this seems to be keeping my liver happy.
I have another problem that popped up, the cheek on the left side of my face swells up, and I look like Chip and Dale's sister. My dentist didn't think it was related to any dental problems or stones in my parotid glands. You can get swelling in the salivary gland area from autoimmunehepatitis, but today my G.I. didn't think that was the case, since it's only on one side. He ordered a lab test to rule out Sjorgren's disease which is another autoimmune problem, but also advised me to see a ENT doctor to have it evaluated.
I've always been trying to gain weight. I'm 5 feet tall, and when I was about 10, I weighed 92 pounds.When all the diarrhea started I could never get over 87 pounds, but I was at my skinniest when they first found my elevsated enzymes. I was down to 84 lbs. Great news! on this new medication, I've gotten to 89lbs, right now 92 lbs. but would be nice but 95 lbsh. would be fantastic. My dream weight is 110 lbs. but thats a little farfetched.
I had labwork done for a routine checkup a couple of months ago and it showed that I had elevated liver enzymes, I was told to see a G.I. doctor. He ran further tests, one of them being anti-smooth muscle antibodies. With the elevated liver enzymes and elevated anti-smooth muscle antibodies, I was told I had autoimmune hepatitis.
I have had other autoimmune problems. I had alopecia aereata when I was younger, I have vitiligo which started about 23 years ago, and has progressed to where I just have a few small areas of skin that still have pigmentation. The last couple of years I have been getting a lot of yeast infections.
I was given Entocort for the colitis, which has given me relief from diarrhea for the first time in about 10 years. There are studies that show Entocort also helps with autoimmune hepatitis. I had liver, and gallbladder ultrasounds and the liver looked OK, but they found some gallstones, but I have no symptoms, and they are leaving that alone for now. My doctor then said I may have to have a liver biopsy, but wanted to run the lab tests again after I was on the Entocort for a few weeks.
The new lab tests showed my liver enzymes went down significantly, but my antismooth body enzymes are about the same. He said this pretty much confirms the autoimmune hepatitis diagnosis.
Usually prednisone is used for the hepatitis, but since this is a immunosupressant drug, it could harm more than help me, especially if I get more upper respiratory infections. After yet another lab test, my liver enzymes are doing good, so I am staying on one Entocort daily, and this seems to be keeping my liver happy.
I have another problem that popped up, the cheek on the left side of my face swells up, and I look like Chip and Dale's sister. My dentist didn't think it was related to any dental problems or stones in my parotid glands. You can get swelling in the salivary gland area from autoimmunehepatitis, but today my G.I. didn't think that was the case, since it's only on one side. He ordered a lab test to rule out Sjorgren's disease which is another autoimmune problem, but also advised me to see a ENT doctor to have it evaluated.
I've always been trying to gain weight. I'm 5 feet tall, and when I was about 10, I weighed 92 pounds.When all the diarrhea started I could never get over 87 pounds, but I was at my skinniest when they first found my elevsated enzymes. I was down to 84 lbs. Great news! on this new medication, I've gotten to 89lbs, right now 92 lbs. but would be nice but 95 lbsh. would be fantastic. My dream weight is 110 lbs. but thats a little farfetched.
Thursday, March 7, 2013
alcohol
I like to say alcohol is a good thing, in my case it may be. For my birthday we went out to dinner and my tremors were bad. Then after dinner we went to a bar, and after afew shots my tremors were gone (for the night).
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