Hi Again everyone,
I got my diagnosis of LC yesterday. My colonoscopy showed:
-patchy erythema: reco, signoid, and descending distol to 50cm;
-a rectol polyp that was biopsied & benign;
-rare diverticula
The GIs notes were: possible early IBD, possible infections, ... Doubt microscopic colitis.
But the path reports came back with biopsies from proximal and distal biopsies saying increased numbers of intrapeithelial lymphoctyes on H&E stain, with CD3 immunostains confirming increased T-cells. Stains for mast cells were basically normal. I just spoke with the pathologist, and he told me he didn't see any evidence of crohn's or ulcerative.
Here's my worry right now: I've had a burning crampy pain in my lower left abdomen since Saturday (with the biopsy on Thursday). It just hasn't gone away. It's less noticeable when I walk.
I'm just nervous I guess. To me, this type of pain sounds more consistent with ulcerative rather than MC. But wouldn't they have seen that in the biopsy?
uggg... don't know what to do.
Best,
Mary
left-sided pain?
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Hi Mary,
Your pain is most likely either associated with one or more hairline longitudinal cracks that are sometimes created during a colonoscopy due to over-inflation with air, or with a diverticulitis infection, or a combination of the two. Your pathological markers clearly indicate MC (not one of the other IBDs). Those splits in the mucosal surface are much more common than most GI specialists like to admit, but usually the irritation will pass after a couple of weeks.
If it becomes worse, rather than better, it might be a good idea to call your doctor.
Tex
Your pain is most likely either associated with one or more hairline longitudinal cracks that are sometimes created during a colonoscopy due to over-inflation with air, or with a diverticulitis infection, or a combination of the two. Your pathological markers clearly indicate MC (not one of the other IBDs). Those splits in the mucosal surface are much more common than most GI specialists like to admit, but usually the irritation will pass after a couple of weeks.
If it becomes worse, rather than better, it might be a good idea to call your doctor.
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.
Hi Tex,
My many thanks. Thank you for responding.
OMG, I'm so worried right now about things. At least one of the other IBDs isn't one of them.
I'm a college prof., and our classes start on the 28th. One class I teach has 300+ students in it. I'm wondering at this point if I need to just plan on not going since my GI won't give me Entocort. What would you guys do? I'm just so scared. Not eating helps be avoid D, and that would be about the only thing I could think if doing if I can't get this under control....
Scare and worried.
Thank you.
Mary
My many thanks. Thank you for responding.
OMG, I'm so worried right now about things. At least one of the other IBDs isn't one of them.
I'm a college prof., and our classes start on the 28th. One class I teach has 300+ students in it. I'm wondering at this point if I need to just plan on not going since my GI won't give me Entocort. What would you guys do? I'm just so scared. Not eating helps be avoid D, and that would be about the only thing I could think if doing if I can't get this under control....
Scare and worried.
Thank you.
Mary
Mary, why won't your GI give you Entocort? You might want to get a second opinion. The drug gave me back my life and allowed me to continue to work full time. I know exactly what you mean about not eating anything but you will crash!! Others here will chime in on going back to really basic foods....broth, very well cooked veggies, etc. to get you through. Good luck to you Mary. Please keep us updated.olivermb wrote:Hi Tex,
My many thanks. Thank you for responding.
OMG, I'm so worried right now about things. At least one of the other IBDs isn't one of them.
I'm a college prof., and our classes start on the 28th. One class I teach has 300+ students in it. I'm wondering at this point if I need to just plan on not going since my GI won't give me Entocort. What would you guys do? I'm just so scared. Not eating helps be avoid D, and that would be about the only thing I could think if doing if I can't get this under control....
Scare and worried.
Thank you.
Mary
Mary,
I agree with Cathy. If I were in your shoes, I would order the generic budesonide in case I needed it in the future. I understand your stress level (and unfortunately, stress can trump virtually any treatment program, with MC). I taught for a few years, but my classes were in engineering, so most of them were only about a tenth that size. Fortunately, I didn't have any major health issues at the time.
Diet changes will usually do the trick, if you are meticulous about them, and avoid all your food sensitivities.
You're most welcome,
Tex
I agree with Cathy. If I were in your shoes, I would order the generic budesonide in case I needed it in the future. I understand your stress level (and unfortunately, stress can trump virtually any treatment program, with MC). I taught for a few years, but my classes were in engineering, so most of them were only about a tenth that size. Fortunately, I didn't have any major health issues at the time.
Diet changes will usually do the trick, if you are meticulous about them, and avoid all your food sensitivities.
You're most welcome,
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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mzh
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Mary, my GP gave me a scrip for Entocort, so there is more than one way to get it. 
The weird part of all this is that his wife is a PA for my GI doc. They will give it to me, but since I was already at my GPs for an appointment, I answered "yes" when he asked if I needed any refills. He didn't bat an eyelash. Maybe you'll get as lucky as I did if you visit your GP. I don't know of they'll go against your GI doc though. If that's the case, can you go to a more cooperative GI doc?
The weird part of all this is that his wife is a PA for my GI doc. They will give it to me, but since I was already at my GPs for an appointment, I answered "yes" when he asked if I needed any refills. He didn't bat an eyelash. Maybe you'll get as lucky as I did if you visit your GP. I don't know of they'll go against your GI doc though. If that's the case, can you go to a more cooperative GI doc?Also have sleep apnea
Hi Cathy,
Thank you for your note. I don't know what he won't give me Entocort. He was really snide about it yesterday when I asked him about it on the phone. He won't return phone calls, etc.
I think I'm going to have to let my Dean know that I can't teach for a little bit.
This pain in my lower ab is about to kill me know. It's been since Saturday. I'm not running a fever, but this is pretty ugly. I don't know at what point to go to ER.
Why-0h-why. Thank you.
Best,
Mary
Thank you for your note. I don't know what he won't give me Entocort. He was really snide about it yesterday when I asked him about it on the phone. He won't return phone calls, etc.
I think I'm going to have to let my Dean know that I can't teach for a little bit.
This pain in my lower ab is about to kill me know. It's been since Saturday. I'm not running a fever, but this is pretty ugly. I don't know at what point to go to ER.
Why-0h-why. Thank you.
Best,
Mary
Hi Mary,
I'm sorry to hear your doctor would not subscribe the generic entocort (budesonide). My doctor wrote me a script with 3 refills and I get it on my medco plan -$20 for 90 pills. I'm so grateful because it is a most effective drug for controlling a flare. The Entocort seems to effect a remission in me. I coasted for 6 months last time without a flare-up. It's been a month now since I took a pill and I have one loose stool every morning which is incredible progress. Other members have had good luck with getting the medicine from the India link and I hope you do too but it takes a while to arrive and may not help you in time for first class day.
Much luck to you!
I'm sorry to hear your doctor would not subscribe the generic entocort (budesonide). My doctor wrote me a script with 3 refills and I get it on my medco plan -$20 for 90 pills. I'm so grateful because it is a most effective drug for controlling a flare. The Entocort seems to effect a remission in me. I coasted for 6 months last time without a flare-up. It's been a month now since I took a pill and I have one loose stool every morning which is incredible progress. Other members have had good luck with getting the medicine from the India link and I hope you do too but it takes a while to arrive and may not help you in time for first class day.
Much luck to you!
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Yes mary, I believe you can oder it overseas with out a script. I know Tex has that info. If you don't hear from him soon, post a new message about it on the main board.
Another thing that might work is Immodium. I know many people on this board have success with it
So sorry about your doctor being so difficult :(
Good Luck
Leah
Another thing that might work is Immodium. I know many people on this board have success with it
So sorry about your doctor being so difficult :(
Good Luck
Leah
Certainly. Prescriptions have no validity outside the borders of the country in which they are written (IOW, medical licenses are not valid across borders).Marcia wrote:Can one order it online (out of the country) w/o a scrip?
An exception is orders to Canadian pharmacies. They require a prescription, but that's simply a feel good requirement on their part. U. S. scripts are invalid in Canada.
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.
Thanks everyone so much,
Yea, if my GI only knew what a pain he is being by not letting me at least try this drug.
As it is right now, I just had to tell my dean about possible problems I might have when classes start in a little over a week. Putting off a decision on how to handle this until the last minute isn't really in the cards, as one of my classes is huge, someone needs to have the time to prepare for it (if it comes to that), etc.
So.... as soon as I brought it up to my dean, then the dominoes started falling, and it looks like they are going to initiate a medical leave for the semester. And then in the spring I have sabbatical. Good lord, it's overkill to have that much time, but with teaching college it's kind of feast or famine like that.
Wow, I sure wish I could have at least tried the drug, but now, maybe it's time to enjoy the semester.
Again everyone, thanks for the support. Now I'll begin the process of working on my diet. I'll be everyone's biggest fan!!
Yours,
Mary
Yea, if my GI only knew what a pain he is being by not letting me at least try this drug.
As it is right now, I just had to tell my dean about possible problems I might have when classes start in a little over a week. Putting off a decision on how to handle this until the last minute isn't really in the cards, as one of my classes is huge, someone needs to have the time to prepare for it (if it comes to that), etc.
So.... as soon as I brought it up to my dean, then the dominoes started falling, and it looks like they are going to initiate a medical leave for the semester. And then in the spring I have sabbatical. Good lord, it's overkill to have that much time, but with teaching college it's kind of feast or famine like that.
Wow, I sure wish I could have at least tried the drug, but now, maybe it's time to enjoy the semester.
Again everyone, thanks for the support. Now I'll begin the process of working on my diet. I'll be everyone's biggest fan!!
Yours,
Mary
Hi Mary,
Some other options......
If you think you need prescription b/f your India delivery arrives.
Schedule appmt with another GI doc (GI doc #2). Bring your lab results. Tell them over the counter meds not working. You've had to take a leave of absence. Don't mention Entocort or online forum. Ask if something else would work besides OTC pepto bismol. If GI doc #2 waffles maybe mention your grandma had microscopic colitis and you think something called Entocort might have worked for her. PS. A lot of time the GI Doc #2s want to do another colonoscopy. Refuse this unless you have severe pain or something.
Another idea....have S.O. or D.H. or yourself call GI docs #1 nurse on Monday. Tell GI #1 docs nurse that pepto bismol is not working and you've had to take a leave of absence from work due to accidents. What is the next step?
PS. Are you still planning on going to China? If so throw that into all of the discussions.....once in a lifetime trip.....expense......concerned about being able to find adult diapers in China etc. concerned about sitting on the tarmac and not being allowed to use toilet due to FCC regulations.
Sorry you are getting the runaround. Brandy
Some other options......
If you think you need prescription b/f your India delivery arrives.
Schedule appmt with another GI doc (GI doc #2). Bring your lab results. Tell them over the counter meds not working. You've had to take a leave of absence. Don't mention Entocort or online forum. Ask if something else would work besides OTC pepto bismol. If GI doc #2 waffles maybe mention your grandma had microscopic colitis and you think something called Entocort might have worked for her. PS. A lot of time the GI Doc #2s want to do another colonoscopy. Refuse this unless you have severe pain or something.
Another idea....have S.O. or D.H. or yourself call GI docs #1 nurse on Monday. Tell GI #1 docs nurse that pepto bismol is not working and you've had to take a leave of absence from work due to accidents. What is the next step?
PS. Are you still planning on going to China? If so throw that into all of the discussions.....once in a lifetime trip.....expense......concerned about being able to find adult diapers in China etc. concerned about sitting on the tarmac and not being allowed to use toilet due to FCC regulations.
Sorry you are getting the runaround. Brandy