Colonoscopy report
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armstrongpilot
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Colonoscopy report
Still having a hard time. My safe foods still seem to have issues some days. Dr told me my colonoscopy was clear and biopsies showed no signs of microscopic colitis. How and why am I struggling with out any clinical signs? He is now questioning my earlier diagnosis of lc.....even tho I do have all the symptoms of it.
Hi ArmstrongPilot,
Even in remission, when my 2nd biopsies did not show the infiltration that my original biopsies did, I wasn't completely free of symptoms. That did not mean that my initial diagnosis was incorrect. It meant the diet changes had worked and I had less inflammation. My gut was still sensitive if I was under stress, too tired, had seasonal allergies, plus I was low on magnesium, Vitamin D, and B vitamins. The healing process is long and slow and often feels like 2 steps forward, one back. If you have Enterolab results, follow them, and be sure your vitamin levels are where they need to be, especially magnesium and D.
In my case I had more fine tuning to do that was not typical of MC-- I had upper GI issues and had to take digestive enzymes and found out I have the MTHFR 1298 gene mutation that was making it difficult for me get traction on feeling more stable.
No one's path is a straight line. I would encourage you to consider if any other issues could be contributing to your issues. Is soy an issue but you hadn't eliminated soy?. Are you eating more fiber than your are ready for? Are you having extra stressors right now or allergies-- or all of the above? I'm sorry I have more questions than answers but it could be that you are just ready for some 'fine tuning'.
all the best,
Carol
Even in remission, when my 2nd biopsies did not show the infiltration that my original biopsies did, I wasn't completely free of symptoms. That did not mean that my initial diagnosis was incorrect. It meant the diet changes had worked and I had less inflammation. My gut was still sensitive if I was under stress, too tired, had seasonal allergies, plus I was low on magnesium, Vitamin D, and B vitamins. The healing process is long and slow and often feels like 2 steps forward, one back. If you have Enterolab results, follow them, and be sure your vitamin levels are where they need to be, especially magnesium and D.
In my case I had more fine tuning to do that was not typical of MC-- I had upper GI issues and had to take digestive enzymes and found out I have the MTHFR 1298 gene mutation that was making it difficult for me get traction on feeling more stable.
No one's path is a straight line. I would encourage you to consider if any other issues could be contributing to your issues. Is soy an issue but you hadn't eliminated soy?. Are you eating more fiber than your are ready for? Are you having extra stressors right now or allergies-- or all of the above? I'm sorry I have more questions than answers but it could be that you are just ready for some 'fine tuning'.
all the best,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Hi Pilot,
How many biopsies were taken and where?
I'm not expert but I believe you can still have problems elsewhere in your gut, i.e. Doc may have missed some areas where you have inflammation and active MC with his/her biopsies.
Also, I believe our disease is called "microscopic" colitis because a colonoscopy on us will show as clear
to the eye and inflammation is only seen through biopsies with a microscope. i.e. I think your doc is inferring you don't
have UC or Crohn's in which inflammation is visible to the naked eye in a colonoscopy.
How many biopsies were taken and where?
I'm not expert but I believe you can still have problems elsewhere in your gut, i.e. Doc may have missed some areas where you have inflammation and active MC with his/her biopsies.
Also, I believe our disease is called "microscopic" colitis because a colonoscopy on us will show as clear
to the eye and inflammation is only seen through biopsies with a microscope. i.e. I think your doc is inferring you don't
have UC or Crohn's in which inflammation is visible to the naked eye in a colonoscopy.
FWIW, 
with the above posts. Medical tests often fail, but symptoms don't lie. My GI doc told me there was nothing wrong with me either after he performed a colonoscopy, even though I was sick as a dog at the time.
Tex
with the above posts. Medical tests often fail, but symptoms don't lie. My GI doc told me there was nothing wrong with me either after he performed a colonoscopy, even though I was sick as a dog at the time.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.
Microscopic colitis is often missed or overlooked (false negative), but it's never diagnosed when it doesn't exist (false positive).
Tex
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.
Have you tried cholestyramine? In many cases, when the diet is not able to bring remission after a reasonable length of time, cholestyramine will do the trick. You may have to experiment with the dose in order to get optimum control.
Tex
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.
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armstrongpilot
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I am on 1 packet a day of cholestrimine.....sandoz brand. Insurance wont cover it because it's not generic....so that's fun. I'm still only eating white steamed rice and turkey. Tried lean hamburger again last night....didn't get d, but my guts definitely dont feel right. Sucks to have food all around and cant really eat anything. I'm down to 1 endocort pill every week.....which is helping with the c getting better. What are some other generally safe foods I can try. I need calories.
Lamb, rabbit, duck, goose, pheasant,quail, emu, venison (deer, elk, etc.), antelope. Any wild-type meat, even if it's farm or ranch raised. Except bison — all bison contain domestic cattle DNA these days, due to cross-breeding. Feedlots use grain to fatten livestock for slaughter, so if you can tolerate rice, that will likely be your best choice for gaining calories. Can you tolerate potatoes? Or sweet potatoes? You're probably not going to be able to gain weight, though, until you get the MC settled down and the inflammation stopped, and your digestive system begins to heal. In other words, you have to be able to absorb the nutrients in your food in order to be able to gain weight. But it sounds as though you might be getting there.
You might have to increase the cholestyramine dose if the diarrhea returns as you wean off budesonide. Or take an OTC antihistaine (such as Allegra, Claritin, Zyrtec, etc.) daily for a few weeks.
I hope this helps.
Tex
You might have to increase the cholestyramine dose if the diarrhea returns as you wean off budesonide. Or take an OTC antihistaine (such as Allegra, Claritin, Zyrtec, etc.) daily for a few weeks.
I hope this helps.
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.
Broken record here....up your cholestyramine dosage. I didn’t get good control until I did 8 packets a day! And I’m a 120# woman. I upped that last September and have been doing 7 packets for the last month or so.
I’m not sure why my insurance company thinks Sandoz brand is a generic, but they do. I believe the original branded version was Questran, correct? Both insurance companies that I had pay for this prescription of Sandoz classified it as a generic.. so you need to look into that.
My experience is that this doesn’t solve your problems overnight. It takes time, but things became less gurgle, rolling, loose. In my world anyway, the less you notice your gut inner workings, the better. Things need to heal up. And apparently I’m still getting better as I am now able to decrease my dosage.
Message me if you would like.
Laine
I’m not sure why my insurance company thinks Sandoz brand is a generic, but they do. I believe the original branded version was Questran, correct? Both insurance companies that I had pay for this prescription of Sandoz classified it as a generic.. so you need to look into that.
My experience is that this doesn’t solve your problems overnight. It takes time, but things became less gurgle, rolling, loose. In my world anyway, the less you notice your gut inner workings, the better. Things need to heal up. And apparently I’m still getting better as I am now able to decrease my dosage.
Message me if you would like.
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Ok , my brother suggested a visual! And he knows how horrible I was, as in diarrhea, off work, losing weight, etc. Actually thought I wouldn’t be alive much longer????.
If you poured 2 quarts of motor oil on your concrete driveway and then tried soaking it up with 1 tablespoon of cat litter...you wouldn’t notice much improvement in your oil problem correct ? You would need to pour a 5 pound bag on it! You couldn’t really say cat litter didn’t help...it would help if you used enough of it!
I don’t want to poke fun. I promised God that if he got me out of that condition then I would try and help others. So here I am, spreading the cholestyramine gospel as it were. I also still take stomach acid (betaine HCl) with protein meals ....but also have to take very little of that anymore.
I of all people GET IT! I do. If something isn’t working, try something else.
Laine
If you poured 2 quarts of motor oil on your concrete driveway and then tried soaking it up with 1 tablespoon of cat litter...you wouldn’t notice much improvement in your oil problem correct ? You would need to pour a 5 pound bag on it! You couldn’t really say cat litter didn’t help...it would help if you used enough of it!
I don’t want to poke fun. I promised God that if he got me out of that condition then I would try and help others. So here I am, spreading the cholestyramine gospel as it were. I also still take stomach acid (betaine HCl) with protein meals ....but also have to take very little of that anymore.
I of all people GET IT! I do. If something isn’t working, try something else.
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Great visual! Too funny!HockeyMom wrote:Ok , my brother suggested a visual! And he knows how horrible I was, as in diarrhea, off work, losing weight, etc. Actually thought I wouldn’t be alive much longer????.
If you poured 2 quarts of motor oil on your concrete driveway and then tried soaking it up with 1 tablespoon of cat litter...you wouldn’t notice much improvement in your oil problem correct ? You would need to pour a 5 pound bag on it! You couldn’t really say cat litter didn’t help...it would help if you used enough of it!
I don’t want to poke fun. I promised God that if he got me out of that condition then I would try and help others. So here I am, spreading the cholestyramine gospel as it were. I also still take stomach acid (betaine HCl) with protein meals ....but also have to take very little of that anymore.
I of all people GET IT! I do. If something isn’t working, try something else.
Laine
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armstrongpilot
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- Joined: Wed Sep 02, 2015 4:31 pm
I might try upping my cholestrymine....however I have to pay full price if I do not want the crappy par brand. Haven't tried avacadoes.....will give it a shot. Its wierd how even on days without symptoms i still dont feel that well at times. Like today I'm not having runs....however I can kinda feel that my intestines arent right.....very hard to explain the feeling. Pressure and discomfort....but just mild enough to be on my mind. Seems I'm always one bite away from having a bad tomorrow.
Um, is your life worth full price? Mine was. Par brand is generic and Sandoz is generic. You probably need to call around and see who carries Sandoz....I’ve had issues and have had to have prescriptions transferred between pharmacies! My docs were accommodating with writing SANDOZ specifically as the generic.
When I moved to Arizona and had to pay for my own crappy health insurance (for a year until I went full time with my current hospital), it was actually cheaper for me to do GoodRx instead of the copay with the insurance. I can’t remember if I was taking 4 or 6 packets a day at that point ...but a months worth was like $111 thru GoodRx.
Believe me, I’ve gone THRU IT WITH THIS STUFF. My last transfer was away from Walgreens because they were giving me a song and dance run around about consistently being able to get Sandoz brand as the generic . It was so bad that they would give me like a partial box (60 packets in a box ) and then I was driving to other Walgreens to piece together the rest of the order. One time I was STUPID enough to not open the bag until I got home and then saw it was some other generic brand I’d never even heard of ! I immediately drove back there and after having to throw a hissy fit (because the boxes weren’t opened ) they credited my payment. At that point I called CVS and have been there ever since. No problems, no issues, no run around. And because it is a generic my copay is $10 for a 3 month supply thru my hospitals health insurance .
When I moved to Arizona and had to pay for my own crappy health insurance (for a year until I went full time with my current hospital), it was actually cheaper for me to do GoodRx instead of the copay with the insurance. I can’t remember if I was taking 4 or 6 packets a day at that point ...but a months worth was like $111 thru GoodRx.
Believe me, I’ve gone THRU IT WITH THIS STUFF. My last transfer was away from Walgreens because they were giving me a song and dance run around about consistently being able to get Sandoz brand as the generic . It was so bad that they would give me like a partial box (60 packets in a box ) and then I was driving to other Walgreens to piece together the rest of the order. One time I was STUPID enough to not open the bag until I got home and then saw it was some other generic brand I’d never even heard of ! I immediately drove back there and after having to throw a hissy fit (because the boxes weren’t opened ) they credited my payment. At that point I called CVS and have been there ever since. No problems, no issues, no run around. And because it is a generic my copay is $10 for a 3 month supply thru my hospitals health insurance .
"Do what you can, with what you have, where you are"-Teddy Roosevelt