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hi grannyh,
I am on 9mg in the AM. But I was thinking about spreading out my dose as you suggested. In fact, I am going to try this over the weekend. At least if I crash, I will be able to (hopefully) get some rest, etc.
Thanks for the tip, I am going to deploy that tomorrow.
Rich
Day 7 Entocort - Status
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Rich,
I don't think I've welcomed you properly so
You've gotten lots of good info. As Tex said, you certainly could be having neuro symptoms from the Entocort. On the more "mundane" side, however, are you well-hydrated and paying attention to your electrolyte balance? It sounds as if you are still having major, frequent diarrhea. The symptoms you describe could also be due to dehydration/electrolyte imbalance. When I have had this in the past, I have experienced similar symptoms - lightheadedness, a feeling that I was "fading or tuning out", etc. For more info, check out the "Welcome Message and Info for Newbies" forum - specifically the topic "Dehydration and Electrolyte Imbalance".
Rich and Joe - interesting language you two speak! LOL! (We physicians get accused of "talking shop" and being unintelligible, but I think you've got me beat!).
Love,
Polly
I don't think I've welcomed you properly so
You've gotten lots of good info. As Tex said, you certainly could be having neuro symptoms from the Entocort. On the more "mundane" side, however, are you well-hydrated and paying attention to your electrolyte balance? It sounds as if you are still having major, frequent diarrhea. The symptoms you describe could also be due to dehydration/electrolyte imbalance. When I have had this in the past, I have experienced similar symptoms - lightheadedness, a feeling that I was "fading or tuning out", etc. For more info, check out the "Welcome Message and Info for Newbies" forum - specifically the topic "Dehydration and Electrolyte Imbalance".
Rich and Joe - interesting language you two speak! LOL! (We physicians get accused of "talking shop" and being unintelligible, but I think you've got me beat!).
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Polly!!
Thanks for the welcome, dear.
You must be following me around, because I am chronically ignoring my water intake. I think that could easily be a factor with me. Thanks for mentioning this.
Do you think I can drink Gatorade to balance my electrolytes?
So good to meet you, and all the others.
Rich
P.S. Polly, I grew up in Maryland (Rockville). Going to be at University of Maryland in a couple weeks too. Will be fun to see my old stomping grounds. Where are you?
Thanks for the welcome, dear.
You must be following me around, because I am chronically ignoring my water intake. I think that could easily be a factor with me. Thanks for mentioning this.
Do you think I can drink Gatorade to balance my electrolytes?
So good to meet you, and all the others.
Rich
P.S. Polly, I grew up in Maryland (Rockville). Going to be at University of Maryland in a couple weeks too. Will be fun to see my old stomping grounds. Where are you?
Rich,
Gatorade is OK and will balance electrolyes, but some MCers have problems with the sugar load, not to mention the artificial colorings/preservatives that some flavors have. If you check out that forum I mentioned in the above post, you will see other options.....even a homemade drink that works, as well as the good old trick of eating a banana and potato chips as you swig the water (not very scientific but it always worked for me)!
So you are from Rockville! I live in Cockeysville, north of Baltimore, but I am definitely a local yokel.......Goucher College and U. of MD School of Medicine. Both my parents went to U. of MD, and my son is now at the U. of MD, University College, getting his B.S. in cybersecurity. Maybe when you are in MD we can do a phone chat.
So good to meet you, too.
Love,
Polly
Gatorade is OK and will balance electrolyes, but some MCers have problems with the sugar load, not to mention the artificial colorings/preservatives that some flavors have. If you check out that forum I mentioned in the above post, you will see other options.....even a homemade drink that works, as well as the good old trick of eating a banana and potato chips as you swig the water (not very scientific but it always worked for me)!
So you are from Rockville! I live in Cockeysville, north of Baltimore, but I am definitely a local yokel.......Goucher College and U. of MD School of Medicine. Both my parents went to U. of MD, and my son is now at the U. of MD, University College, getting his B.S. in cybersecurity. Maybe when you are in MD we can do a phone chat.
So good to meet you, too.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
GrannyH,
I could be wrong, but I have a hunch that your extra BMs in the morning are probably due to the caffeine in the coffee, rather than MC. Some people are just affected that way. I don't drink coffee, but one of the reasons I don't, is because it has that effect on me.
I can drink two cokes in a row, (in order to get a dose of caffeine roughly equivalent to a cup of coffee), and it will have the same effect on me.
Tex
I could be wrong, but I have a hunch that your extra BMs in the morning are probably due to the caffeine in the coffee, rather than MC. Some people are just affected that way. I don't drink coffee, but one of the reasons I don't, is because it has that effect on me.
I can drink two cokes in a row, (in order to get a dose of caffeine roughly equivalent to a cup of coffee), and it will have the same effect on me.Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Rich,
I envy your present work - that's extremely fascinating, to say the least. I've led a mighty dull life, compared with what you guys are doing. My training is in mechanical engineering, (though I had a EE roommate while I was in school). I never could decide what I wanted to do if I ever grew up, though, so I taught for a couple of years, and then went back to the farm, farmed for a while, and then designed and built a corn processing facility, and got into the food corn business. That was fun for a while, until Frito-Lay decided to put some of my biggest customers out of business, (chip and tortilla plants), and about that time, my symptoms started showing up. I switched from food corn to feed corn, (deer corn is big business here in Texas, and the surrounding states), and built up a pretty good business supplying bagged, palleted corn to several major chain stores, and began branching out into other states, but my symptoms kept getting worse, and it didn't take long before I could no longer handle the long hours required for that type of business, and I had to begin downsizing. It took me too long to figure out what was causing my problems, (and my doctors were no help), and because of that, it took me a long time to recover, and I ended up with peripheral neuropathy, and before I knew it, I was old and worn out. I still work, but I limit my hours now, and try to enjoy life more.
I love engineering work, especially the hands-on stuff - making things work, and/or figuring out why they stopped working, but FWIW, if I had it to do over, I would go to med school, instead.
Tex
I envy your present work - that's extremely fascinating, to say the least. I've led a mighty dull life, compared with what you guys are doing. My training is in mechanical engineering, (though I had a EE roommate while I was in school). I never could decide what I wanted to do if I ever grew up, though, so I taught for a couple of years, and then went back to the farm, farmed for a while, and then designed and built a corn processing facility, and got into the food corn business. That was fun for a while, until Frito-Lay decided to put some of my biggest customers out of business, (chip and tortilla plants), and about that time, my symptoms started showing up. I switched from food corn to feed corn, (deer corn is big business here in Texas, and the surrounding states), and built up a pretty good business supplying bagged, palleted corn to several major chain stores, and began branching out into other states, but my symptoms kept getting worse, and it didn't take long before I could no longer handle the long hours required for that type of business, and I had to begin downsizing. It took me too long to figure out what was causing my problems, (and my doctors were no help), and because of that, it took me a long time to recover, and I ended up with peripheral neuropathy, and before I knew it, I was old and worn out.
I still work, but I limit my hours now, and try to enjoy life more.I love engineering work, especially the hands-on stuff - making things work, and/or figuring out why they stopped working, but FWIW, if I had it to do over, I would go to med school, instead.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
That is interesting about your career (especially as I am eating Fritos right now - GF right?). I also enjoy working with my hands. That is where the rubber meets the road. I formerly worked for a medical device manufacturer with some very creative ME's making orthopedic instruments.
The ever-changing challenge of trying to determine root cause for the losses I inspect is a very exciting and mentally refreshing aspect of my work. There is nothing glamorous about a lot of aspects of my work however, like never sleeping in one's own bed. I call it a hollow victory, lots of travel perks but never at home. But is is a necessary aspect of my job, unfortunately. I sure understand wanting to (and needing to) slow down... I am working to do that somewhat soon. And I also think about med school. I used to think about law school, but I work with many law firms and that (no offense to any lawyers on this board) has shown me that my interest in law isn't as strong as I previously thought.
I am curious as to the symptoms that led you to believe you have a p. neuropathy? My pelvic pain feels very neuropathic too. No way to describe that pain, though a woman I met at Stanford told me that now I know what never-ending labor pains feel like. She just completed successful pudendal nerve decompression surgery, and after 15 years of chronic pain, is getting some relief from her symptoms.
Rich
That is interesting about your career (especially as I am eating Fritos right now - GF right?). I also enjoy working with my hands. That is where the rubber meets the road. I formerly worked for a medical device manufacturer with some very creative ME's making orthopedic instruments.
The ever-changing challenge of trying to determine root cause for the losses I inspect is a very exciting and mentally refreshing aspect of my work. There is nothing glamorous about a lot of aspects of my work however, like never sleeping in one's own bed. I call it a hollow victory, lots of travel perks but never at home. But is is a necessary aspect of my job, unfortunately. I sure understand wanting to (and needing to) slow down... I am working to do that somewhat soon. And I also think about med school. I used to think about law school, but I work with many law firms and that (no offense to any lawyers on this board) has shown me that my interest in law isn't as strong as I previously thought.
I am curious as to the symptoms that led you to believe you have a p. neuropathy? My pelvic pain feels very neuropathic too. No way to describe that pain, though a woman I met at Stanford told me that now I know what never-ending labor pains feel like. She just completed successful pudendal nerve decompression surgery, and after 15 years of chronic pain, is getting some relief from her symptoms.
Rich
The first major issue that I noticed was that I was developing balance problems - difficulty balancing on one foot, etc. Then I noticed that occasionally a toenail or two would be blue, and I didn't have the foggiest idea when it happened, or what had caused it. In July of last year, I had what the doctors ruled a TIA, (transient ischemic attack), by default, because they couldn't find any other reason for it. (I woke up one morning, feeling entirely normal, but after I got up and started getting dressed, I noticed that my right hand was numb. I assumed that it would soon "wake up", but instead, the numbness continued to spread on up my arm, to the top of the shoulder. When the right side of my face started getting numb, I took an aspirin, and finished dressing. In half an hour, it wasn't any better, so I took another aspirin, and headed for the ER.
Naturally, when I got there, my BP was elevated, but they couldn't find anything else wrong with me, (blood enzymes looked normal, so no heart attack, EKG was normal, etc., and I still had normal control of all my limbs, at almost full strength. They told me to start taking a baby aspirin, and sent me home. Over the next few days, most of the numbness disappeared, (except for the corner of my mouth).
Polly talked me into seeing a neurologist, (to try to figure out a reason), and as soon as he laid eyes on me, he decided that I had Parkinson's disease. He checked all my reflexes, and my lower legs were unresponsive, from the knee down. No feeling in my feet, either. He said I didn't walk right, etc., and diagnosed me with Parkinson's. Despite running all sorts of tests, including MRI brain scans, he couldn't find any clues as to why I might have had the TIA symptoms. I later determined that he was wrong about the Parkinson's, but he did do something positive for me. He gave me a sample of Metanx, which is a megavitamin combination of B-12, B-9, and B-6, available by prescription only. It's designed to treat peripheral neuropathy caused by diabetes. I asked my GP about it, and he said he has been taking it for years, because it enhances memory, and cognitive abilities, and it helps to overcome the effects of aging. So he wrote a prescription, and I continued to take it.
In May of this year, while taking a shower, at about 11:30 at night, I had another TIA-like incident, almost identical to the first one. I couldn't decide whether or not to go to the ER, but finally decided to go, because on the second event, they might be more likely to run additional tests, and sure enough they did. Unfortunately, though, they still didn't figure out anything, but they insisted that I am a high risk for stroke, (even though they couldn't find the cause of my symptoms), simply because they could not rule out a TIA. So now I have to take BP meds, to keep my BP down at low levels, heart meds, to slow my heart rate, and a statin, to lower my cholesterol, even though it wasn't actually high. I also have to take Plavix, of course, which is a hell of a lot more expensive than aspirin, to keep my blood from clotting.
Anyway, as part of the workup, they sent two neurologists by to check me out, an intern, and her supervisor, who happened to be the head of the department. (I was at a teaching hospital). They checked me from top to bottom, and discovered that I now have reflexes in my knees and my ankles, and I have a little feeling in my feet, (I can feel a pin prick at pretty much any location). Soooooooo, my peripheral neuropathy had improved significantly in the 9 months that I had been taking Metanx, at that point, and my balance was somewhat better. They also agreed with me, that I do not have Parkinson's disease, so the neuropathy has to be due to some other cause.
They didn't want to believe that my peripheral neuropathy was from gluten sensitivity, of course, but they couldn't find anything else to blame it on, either, since I don't have diabetes. There's no doubt in my mind, though, that it's due to too many years of accumulating damage from gluten, before I finally figured out the problem, and cut it out of my diet.
Tex
Naturally, when I got there, my BP was elevated, but they couldn't find anything else wrong with me, (blood enzymes looked normal, so no heart attack, EKG was normal, etc., and I still had normal control of all my limbs, at almost full strength. They told me to start taking a baby aspirin, and sent me home. Over the next few days, most of the numbness disappeared, (except for the corner of my mouth).
Polly talked me into seeing a neurologist, (to try to figure out a reason), and as soon as he laid eyes on me, he decided that I had Parkinson's disease. He checked all my reflexes, and my lower legs were unresponsive, from the knee down. No feeling in my feet, either. He said I didn't walk right, etc., and diagnosed me with Parkinson's. Despite running all sorts of tests, including MRI brain scans, he couldn't find any clues as to why I might have had the TIA symptoms. I later determined that he was wrong about the Parkinson's, but he did do something positive for me. He gave me a sample of Metanx, which is a megavitamin combination of B-12, B-9, and B-6, available by prescription only. It's designed to treat peripheral neuropathy caused by diabetes. I asked my GP about it, and he said he has been taking it for years, because it enhances memory, and cognitive abilities, and it helps to overcome the effects of aging. So he wrote a prescription, and I continued to take it.
In May of this year, while taking a shower, at about 11:30 at night, I had another TIA-like incident, almost identical to the first one. I couldn't decide whether or not to go to the ER, but finally decided to go, because on the second event, they might be more likely to run additional tests, and sure enough they did. Unfortunately, though, they still didn't figure out anything, but they insisted that I am a high risk for stroke, (even though they couldn't find the cause of my symptoms), simply because they could not rule out a TIA. So now I have to take BP meds, to keep my BP down at low levels, heart meds, to slow my heart rate, and a statin, to lower my cholesterol, even though it wasn't actually high.
I also have to take Plavix, of course, which is a hell of a lot more expensive than aspirin, to keep my blood from clotting.Anyway, as part of the workup, they sent two neurologists by to check me out, an intern, and her supervisor, who happened to be the head of the department. (I was at a teaching hospital). They checked me from top to bottom, and discovered that I now have reflexes in my knees and my ankles, and I have a little feeling in my feet, (I can feel a pin prick at pretty much any location). Soooooooo, my peripheral neuropathy had improved significantly in the 9 months that I had been taking Metanx, at that point, and my balance was somewhat better. They also agreed with me, that I do not have Parkinson's disease, so the neuropathy has to be due to some other cause.
They didn't want to believe that my peripheral neuropathy was from gluten sensitivity, of course, but they couldn't find anything else to blame it on, either, since I don't have diabetes. There's no doubt in my mind, though, that it's due to too many years of accumulating damage from gluten, before I finally figured out the problem, and cut it out of my diet.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
GrannyH,
That's what I figured.
You're not the only one who follows that routine in the morning - I get the impression that it's pretty common. Like you, most folks just consider it to be a part of their morning routine - nothing to get excited about. LOL.
Tex
That's what I figured.
You're not the only one who follows that routine in the morning - I get the impression that it's pretty common. Like you, most folks just consider it to be a part of their morning routine - nothing to get excited about. LOL.Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex, when I think about what my life was like before entocort and before I found this group.. I cringe!! At one point I was willing to just dehydrate and take a sod nap! I can say this group saved my life! I found hope and determination to struggle on til I found a way back to a "real life".
grannyh
grannyh
GrannyH,
I'm glad to see that you feel that you've gotten your money's worth from this board. I don't know if you realize it or not, but IMO, you've always given us more than you've received. You've always been able to find humor in the day-to-day dealings with this disease, even when the situation seemed bleak, and you've always had a life-of-the-party attitude, that has brought us a lot of smiles, over the years. It's no wonder that I always look forward to your posts.
Thanks for sharing your thoughts, and your support,
Tex
I'm glad to see that you feel that you've gotten your money's worth from this board. I don't know if you realize it or not, but IMO, you've always given us more than you've received. You've always been able to find humor in the day-to-day dealings with this disease, even when the situation seemed bleak, and you've always had a life-of-the-party attitude, that has brought us a lot of smiles, over the years. It's no wonder that I always look forward to your posts.
Thanks for sharing your thoughts, and your support,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.