Hi Everyone,
As a newcomer to this forum and to GI issues, I'm really grateful that everyone has taken the time to share their experiences. I've been reading so much over the weekend. Thank you.
So I would love everyone's feedback on how long to wait before asking for a diagnosis. I haven't done a colonoscopy, but my symptoms sure sound similar to MC. About 16 days ago I had a watery diarrhea out of the blue, and I figured it would go away after a day or two. No other real symptoms except for at the beginning, D (is that the abbreviation for diarrhea) was very water and frequent, with a couple of days a little bit of leakage or fear of it. But nothing horrific. After that, I would have D mostly in the morning, but just a tad here and there when I would use the bathroom otherwise. But when this didn't clear up after 10 days, I went to my regular doctor, and stool samples ruled out Cdiff, bacterial infections, and parasites. They told me to take Imodium and they scheduled an appointment with a GI. I felt so much better that when I went to see the GI, we both agreed that things seemed to have mended. Stopped the meds, and yesterday, after having a bowl of cereal, was hit was watery diarrhea. Then took some pepto, and it immediately made me feel fine. Throughout I have generally felt great -- no real cramps, etc. The only potentially nagging thing is a slight headache that is rare for me.
The other thing of note is that I have had some stress in my life this spring/summer. I was diagnosed with two different spots of melanoma, but thank God they were very very early (in situ) and were treated successfully with surgery only. But I have to admit that it flipped me out, and a result, was put onto zoloft in mid-May (low dose at 50 mg). When I started dealing with this D, I told me doctor I wanted to go off this zoloft, and he told me I could quit. So it's been a little over a week since I stopped taking it, and I can still feel the zipping and zapping withdrawls of it.
Sooo.... I guess I've written a dissertation here, and I'm sorry. I'm just wondering if I should give it any more time before scheduling a colonoscopy. I'm not sure if I should see how it goes until I'm totally off the zoloft? Or should quit taking the pepto and see if it comes back? How long is typical before people seek a diagnosis? I'm all so new to this, and I have to say am very shocked given that I've never had any food problems whatsoever, despite eating very spicy food, etc. (I am almost 48 years old).
Again, my many thanks for advice. I guess the melanoma, the D, and all of it has started to take its toll.
Thanks everyone, and my best hope to everyone for living a healthy life.
Yours,
Mary
Advice Sought
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Mary,
Welcome aboard. I'm short of time (have to go unload a truck), but I wanted to welcome you, and say that I went to see my doctor after a couple of weeks of uncontrollable D. This disease can wax and wane, but your symptoms sound very much like MC. Stress is definitely a contributing factor to the initial development of the disease and later relapses.
If you undergo a colonoscopy, be sure that the doctor takes plenty of biopsies from all sections of your colon, (and ileum, if he goes that far).
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome aboard. I'm short of time (have to go unload a truck), but I wanted to welcome you, and say that I went to see my doctor after a couple of weeks of uncontrollable D. This disease can wax and wane, but your symptoms sound very much like MC. Stress is definitely a contributing factor to the initial development of the disease and later relapses.
If you undergo a colonoscopy, be sure that the doctor takes plenty of biopsies from all sections of your colon, (and ileum, if he goes that far).
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
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.
I endured almost 3 months of D 3-8 times a day before I saw a doctor. It seems you are aware that Zoloft and other SSRI antidepressants can cause drug-induced MC. With any luck, this will be your answer and you may not have to make tons of dietary changes, just quit the Zoloft. If you caught it early, you may be lucky enough to have spontaneous remission after stopping the drug, and a colonoscopy may not show too much at this stage.
On the other hand, if you have a history of digestive trouble, it may worthwhile to check for celiac disease and get a colonoscopy.
On the other hand, if you have a history of digestive trouble, it may worthwhile to check for celiac disease and get a colonoscopy.
HI Mary,
Welcome. I'm kinda mixed on how to answer your question.
There certainly is an advantage to having a diagnosis in that it can start you on the path to healing. You'll know what you are dealing with.
On the other hand, if it's not debilitating or interfering with your life, then you may feel there is less reason to go through an intrusive test like a colonoscopy. As Tex said the only way to get the diagnosis is to have biopsies done.
You've probably seen that roughly 95% of us have gluten sensitivities and going to a gluten free diet can make a huge difference. Soy and dairy are also problematic for the majority of us.
When in my first long term flare I had to eat low fat, very low fiber, no acid, no caffeine, no gluten, no soy, no dairy, no sugar, and (later) no eggs. I had to stay with very easy to digest foods for several months then only added foods after I had MRT testing done and knew what foods would be relatively safe.
It could be that time will tell you where to go next. If it persists you may need to make more adjustments to your diet to get it arrested.
take care.
Carol
Welcome. I'm kinda mixed on how to answer your question.
There certainly is an advantage to having a diagnosis in that it can start you on the path to healing. You'll know what you are dealing with.
On the other hand, if it's not debilitating or interfering with your life, then you may feel there is less reason to go through an intrusive test like a colonoscopy. As Tex said the only way to get the diagnosis is to have biopsies done.
You've probably seen that roughly 95% of us have gluten sensitivities and going to a gluten free diet can make a huge difference. Soy and dairy are also problematic for the majority of us.
When in my first long term flare I had to eat low fat, very low fiber, no acid, no caffeine, no gluten, no soy, no dairy, no sugar, and (later) no eggs. I had to stay with very easy to digest foods for several months then only added foods after I had MRT testing done and knew what foods would be relatively safe.
It could be that time will tell you where to go next. If it persists you may need to make more adjustments to your diet to get it arrested.
take care.
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 mary. Welcome. No one can tell you when to get the dx. You will know when you have had enough of this. I was in the GI's office within a month and had the biopsies (colon and endoscopy) the following week. I'm hoping that it is drug induced, but if it's not, you will probably need to look at your diet. The cereal with milk is suspicious. Dairy was my biggest offender and had to go very early. Gluten and soy soon followed. The good news, is that i am much better. Let's not jump ahead though. Dx first. Keep us posted.
Leah
Leah
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My experience is a little different than the experiences of many of the people here. I have had a lifetime of "ibs" type symptoms. I tried a few times over the years to get medical help but no doctor ever had anything useful to say and generally what they suggested, eat more fiber mostly, just made things worse. I realize now that no doctor ever did the right tests that might have resulted in an appropriate diagnosis. By the time I arrived on this forum in March of this year my symptoms were severe, WD too many times a day to count, unable to leave the house except after taking 6-8 immodium. I was used to trying to manage my own symptoms mostly through diet so when I found this forum I just went ahead and instituted a diet that was gluten, soy, dairy and egg free. I already knew that I couldn't tolerate much if any fiber. Then I ordered the Enterolab tests which simply validated the appropriateness of the dietary changes I had already made. I decided not to try to seek an official diagnosis through a colonoscopy since in my case it wasn't going to make any difference in my treatment. I was managing things through the changes in my diet and had long ago given up on doctors as being helpful for my GI problems. If I felt I needed a prescription drug I might seek medical help but even then I might just order it on my own. I think for some people an official diagnosis has a lot of psychological benefit. It can underscore the need to make serious dietary changes which can be difficult. Also if you want a prescription for medication a doctor is necessary (unless you go the ordering overseas route). You don't need a doctor to change your diet or to order the Enterolab tests. So it is really up to you to decide the route you wish to follow. The people on this forum have a lot more knowledge than most GI doctors when it comes to MC, IMO.
Jean
Jean
Hi Everyone,
My many, many thanks. I am learning so much from your insights. I so appreciate everyone's willingness to share their experiences.
At this point since I've experienced this with so many confounds, I guess I'm willing to give it a few days to see if going off the Zoloft does the trick. I've never had any GI problems before to speak of, so all of this is very new to me. And as it is right now, the effects aren't really bad and they're controllabe with PD or Imodium, but I think that that's not the right way to approach this, right?
So today I had a pretty normal BM (a Norman as you guys say
?). But this may be because I took a lot of bismol yesterday. Does this sound likely? I think my strategy will be that today I will not take any bismol, and will avoid gluten and milk (which I did yesterday, too). By Tuesday I will have been off of Zoloft completely for 11 days. I don't know if that's enough time to really know if it's better or not. But I think by that time if things are still not normal, I'm okay with getting the tests done. I think I would rather know and start treatment ASAP if that's what it is.
And if changing my diet is what I have to do, then I'll grieve about it and get on with it. My step-mother is celiac (diagnosed about 15 years ago). I've seen how she manages, and it's pretty impressive. And SHE was a BIG dessert lover (I'm not at all, really), and my Dad a master Tollhouse cooker maker. But he fiddled with his recipes, and now makes a gluten-free Tollhouse cookie that is absolutely not discernible from the original recipe. He really should patent it! I'll get him to give me the recipe.
Let me know if you think my strategy seems reasonable or half-baked (no pun intended). And again, my many, many thanks to everyone.
Kindly,
Mary
My many, many thanks. I am learning so much from your insights. I so appreciate everyone's willingness to share their experiences.
At this point since I've experienced this with so many confounds, I guess I'm willing to give it a few days to see if going off the Zoloft does the trick. I've never had any GI problems before to speak of, so all of this is very new to me. And as it is right now, the effects aren't really bad and they're controllabe with PD or Imodium, but I think that that's not the right way to approach this, right?
So today I had a pretty normal BM (a Norman as you guys say
?). But this may be because I took a lot of bismol yesterday. Does this sound likely? I think my strategy will be that today I will not take any bismol, and will avoid gluten and milk (which I did yesterday, too). By Tuesday I will have been off of Zoloft completely for 11 days. I don't know if that's enough time to really know if it's better or not. But I think by that time if things are still not normal, I'm okay with getting the tests done. I think I would rather know and start treatment ASAP if that's what it is.And if changing my diet is what I have to do, then I'll grieve about it and get on with it. My step-mother is celiac (diagnosed about 15 years ago). I've seen how she manages, and it's pretty impressive. And SHE was a BIG dessert lover (I'm not at all, really), and my Dad a master Tollhouse cooker maker. But he fiddled with his recipes, and now makes a gluten-free Tollhouse cookie that is absolutely not discernible from the original recipe. He really should patent it! I'll get him to give me the recipe.
Let me know if you think my strategy seems reasonable or half-baked (no pun intended). And again, my many, many thanks to everyone.
Kindly,
Mary
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Ok....first things first... Can you share the Toll House chocolate chip cookie (biscuit) recipe. We have to keep our priorities in line here 
Seriously though, welcome to the group from New Hampshire.
I think overall you are the right course by eliminating the meds that may be causing the problems. With that said though the experience here be hundreds and hundreds of members is that we also need to eliminate the dietary irritants as well. For just about all of that means gluten has to go and for about 70% of us it's also means anything made from soy and about 50 or 60 % of us react to dairy to some degree.
I think it's great that you have managed this with minimal meds so far. You are at a good point where just a few changes in diet may very well mean that you can most likely achieve remission. There are many that are much further along with this disease that need not only dietary changes but also need to take meds like steroids to achieve some relief. I would certainly encourage you to pursue dietary changes and or food sensitivity testing through either Enterolab or MRI testing with a company called Signet Diagnositics. Initially you may find the testing through Enterolab to be the most helpful.
Overall addressing the source of the problems makes sense, doesn't it?? As you are working on eliminating a problematic med, if you test for the dietary issues, you will know what those are and can achieve meaningful long term remission.
Thanks for joining the group and sharing with us your experiences.
Take care and please keep us informed of your progress
PS: don't forget the recipe
Seriously though, welcome to the group from New Hampshire.
I think overall you are the right course by eliminating the meds that may be causing the problems. With that said though the experience here be hundreds and hundreds of members is that we also need to eliminate the dietary irritants as well. For just about all of that means gluten has to go and for about 70% of us it's also means anything made from soy and about 50 or 60 % of us react to dairy to some degree.
I think it's great that you have managed this with minimal meds so far. You are at a good point where just a few changes in diet may very well mean that you can most likely achieve remission. There are many that are much further along with this disease that need not only dietary changes but also need to take meds like steroids to achieve some relief. I would certainly encourage you to pursue dietary changes and or food sensitivity testing through either Enterolab or MRI testing with a company called Signet Diagnositics. Initially you may find the testing through Enterolab to be the most helpful.
Overall addressing the source of the problems makes sense, doesn't it?? As you are working on eliminating a problematic med, if you test for the dietary issues, you will know what those are and can achieve meaningful long term remission.
Thanks for joining the group and sharing with us your experiences.
Take care and please keep us informed of your progress
PS: don't forget the recipe
Joe
Sounds like you are on the right track. We are all so different. The pepto and Immodium will mask your food intolerances, but they won't hurt you ( unless you are allergic to them). Once you are off gluten and dairy for a while, try to go with no meds. If you are better, then reintroduce ONE THING AT A TIME for a few days and see what happens. I'm hoping that you getting off the Zoloft is all you needed, but it doing this way will tell you if food is part of your issue also. Good luck.
Leah
Leah
Welcome to the board, Mary!!! 
It might be helpful to know that some people achieve remission by taking Pepto Bismol for 8 weeks. Most do not, but a few will. Dr. Fine, the GI who founded Enterolab, was the doctor who originally wrote the paper recommending Pepto Bismol. He no longer does, primarily because of the high incidence of relapse. I think it's worth a try because it's cheap and might work quickly.
You also may be one of the fortunate souls who achieves remission by quitting Zoloft. You have several options you can try.
BTW, Tex, our resident expert and board administrator, never was diagnosed with MC by a physician. His name on the old board was "Self-diagnosed." He found the board, like you, recognized that he had the same symptoms, and felt like he was home. He had already achieved remission via dietary changes by that time.
Gloria
It might be helpful to know that some people achieve remission by taking Pepto Bismol for 8 weeks. Most do not, but a few will. Dr. Fine, the GI who founded Enterolab, was the doctor who originally wrote the paper recommending Pepto Bismol. He no longer does, primarily because of the high incidence of relapse. I think it's worth a try because it's cheap and might work quickly.
You also may be one of the fortunate souls who achieves remission by quitting Zoloft. You have several options you can try.
BTW, Tex, our resident expert and board administrator, never was diagnosed with MC by a physician. His name on the old board was "Self-diagnosed." He found the board, like you, recognized that he had the same symptoms, and felt like he was home. He had already achieved remission via dietary changes by that time.
Gloria
You never know what you can do until you have to do it.
Hi Everyone,
Thank you SO MUCH for the helpful responses. I really do appreciate it tremendously. People like me have the benefit of learning from the paths you have already walked. So appreciated!!
Okay, yesterday was a pretty good day -- definitely saw some improvement! Just one near-norman in the morning, a little stomach growling here and there but not much, and that it was it. I didn't take any meds at all yesterday. This morning, almost 100% normal (but not quite -- say 95%). But despite the fact that I'm experimental social scientist, I always ALWAYS seem to confound my own experiments. So here are possibilities for why it may have been a good day -- things I changed, and things that change on their own:
a. It occurred to me that sorbitol in sugerless gum might be a big problem, so eliminated that altogether.
b. No dairy or milk for 2 days. (BTW, I did drink a couple of Redbridge gluten-free beers last night -- FANTASTIC!!)
c. I've been off Zoloft now for a while -- a little over one full week -- and the symptoms are definitely resolving
d. In the way-off chance that my stomach is settling down from a virus, then it's just more time.
Now I feel like I have to decide really pretty soon if I should pursue a formal diagnosis or not, as I start teaching soon again, and in September I'll be traveling for two weeks in China (which scares me at this moment!). I'm worried that if I need to get on meds, then I need to move to get diagnosed soon. If the diet helps, then that's great. But since I'm new, I really worry about traveling. On the other hand, so far PB and/or imodium seems to work okay when things aren't that great. Aaarrrggg. Don't know what to do.
Okay.... now on to the real point at hand -- the Toll House cookies for Joe and others who may be interested. I talked with my Dad last night and got him to tell me his recipe. At first he was just like "Oh, use GF flour." But I kept prodding him -- "Dad, I bragged about these cookies, so you have to cough up the real recipe or I'm going to look like an idiot." Obviously this recipe is for someone who is only gluten intolerant, so it would have to be modified for lactose intolerance and other food sensitivities. Okay, so here's what I got:
In One Bowl combine:
-GF Pantry All Purpose Flour (2 1/4 cups)
-2 heaping teaspoons for xanthan gum (1 tsp for every cup of flour)
-1 tsp salt
-1 tsp baking soda
In a separate bowl:
-3/4 cup granulated sugar
-3/4 cup brown sugar
-1/4 cup butter-flavored crisco, softened (Dad said this was key, as otherwise the cookers were too flat/crisp)
-1/2 cup regular butter, softened
-After these ingredients are together, mix in:
-2 eggs
-1tsp vanilla (or a little more?)
Mix the two bowls of ingredients together.
Then:
-Add 8 oz chocolate chips (or chips of choice)
-My dad also adds a cup of pecans. (I have always loved black walnuts)
Bake at 375, but he didn't say for how long! I'm guessing about 8-11 minutes.
Sure hope you like it!
Warmly,
Mary
Thank you SO MUCH for the helpful responses. I really do appreciate it tremendously. People like me have the benefit of learning from the paths you have already walked. So appreciated!!
Okay, yesterday was a pretty good day -- definitely saw some improvement! Just one near-norman in the morning, a little stomach growling here and there but not much, and that it was it. I didn't take any meds at all yesterday. This morning, almost 100% normal (but not quite -- say 95%). But despite the fact that I'm experimental social scientist, I always ALWAYS seem to confound my own experiments. So here are possibilities for why it may have been a good day -- things I changed, and things that change on their own:
a. It occurred to me that sorbitol in sugerless gum might be a big problem, so eliminated that altogether.
b. No dairy or milk for 2 days. (BTW, I did drink a couple of Redbridge gluten-free beers last night -- FANTASTIC!!)
c. I've been off Zoloft now for a while -- a little over one full week -- and the symptoms are definitely resolving
d. In the way-off chance that my stomach is settling down from a virus, then it's just more time.
Now I feel like I have to decide really pretty soon if I should pursue a formal diagnosis or not, as I start teaching soon again, and in September I'll be traveling for two weeks in China (which scares me at this moment!). I'm worried that if I need to get on meds, then I need to move to get diagnosed soon. If the diet helps, then that's great. But since I'm new, I really worry about traveling. On the other hand, so far PB and/or imodium seems to work okay when things aren't that great. Aaarrrggg. Don't know what to do.
Okay.... now on to the real point at hand -- the Toll House cookies for Joe and others who may be interested. I talked with my Dad last night and got him to tell me his recipe. At first he was just like "Oh, use GF flour." But I kept prodding him -- "Dad, I bragged about these cookies, so you have to cough up the real recipe or I'm going to look like an idiot." Obviously this recipe is for someone who is only gluten intolerant, so it would have to be modified for lactose intolerance and other food sensitivities. Okay, so here's what I got:
In One Bowl combine:
-GF Pantry All Purpose Flour (2 1/4 cups)
-2 heaping teaspoons for xanthan gum (1 tsp for every cup of flour)
-1 tsp salt
-1 tsp baking soda
In a separate bowl:
-3/4 cup granulated sugar
-3/4 cup brown sugar
-1/4 cup butter-flavored crisco, softened (Dad said this was key, as otherwise the cookers were too flat/crisp)
-1/2 cup regular butter, softened
-After these ingredients are together, mix in:
-2 eggs
-1tsp vanilla (or a little more?)
Mix the two bowls of ingredients together.
Then:
-Add 8 oz chocolate chips (or chips of choice)
-My dad also adds a cup of pecans. (I have always loved black walnuts)
Bake at 375, but he didn't say for how long! I'm guessing about 8-11 minutes.
Sure hope you like it!
Warmly,
Mary
Sounds like you are doing great Mary! You probably don't need to be on meds even if you are Dx with MC. Like many have said, it's very possible to do this without... and is better if you can.
With the cookie recipe, I think many of us would have to change the fat ( because of dairy or vegetable oil intolerance) Will coconut oil work? ( shout out to those GF bakers)
Thanks for sharing and let us know how well you are doing.
Leah
With the cookie recipe, I think many of us would have to change the fat ( because of dairy or vegetable oil intolerance) Will coconut oil work? ( shout out to those GF bakers)
Thanks for sharing and let us know how well you are doing.
Leah
Mary,
Given your mild symptoms, I wonder whether your doc would even recommend a colonoscopy. Even then, colonoscopies are not without risk, and many people's symptoms get worse after having them. Also, if your symptoms are mild, your doctor will probably not offer a steroid-based medication like Entocort right away. I was only offered Mesalamine (Asacol), which had a list of side-effects that scared me off. I took Pepto Bismol tabs instead, only 4/day, and combined with the GF/DF, mostly soy free diet, I got much better and dropped the Pepto. I only take it when I get indigestion or a mild flare now. If you are due for a cancer screening colonoscopy based on age, by all means do it, and MAKE SURE they take biopsies during the colonoscopy.
And don't be surprised if you seek a diagnosis, get no testing, and walk out with a useless "diagnosis" of IBS.
I made Pamela's Chocolate Chunk cookies yesterday using Earth's Best Soy-free butter alternative and they turned out great. No need for butter or Crisco. My friend makes her chocolate chip cookies with apple sauce and olive oil and says her kids love them!
Given your mild symptoms, I wonder whether your doc would even recommend a colonoscopy. Even then, colonoscopies are not without risk, and many people's symptoms get worse after having them. Also, if your symptoms are mild, your doctor will probably not offer a steroid-based medication like Entocort right away. I was only offered Mesalamine (Asacol), which had a list of side-effects that scared me off. I took Pepto Bismol tabs instead, only 4/day, and combined with the GF/DF, mostly soy free diet, I got much better and dropped the Pepto. I only take it when I get indigestion or a mild flare now. If you are due for a cancer screening colonoscopy based on age, by all means do it, and MAKE SURE they take biopsies during the colonoscopy.
And don't be surprised if you seek a diagnosis, get no testing, and walk out with a useless "diagnosis" of IBS.
I made Pamela's Chocolate Chunk cookies yesterday using Earth's Best Soy-free butter alternative and they turned out great. No need for butter or Crisco. My friend makes her chocolate chip cookies with apple sauce and olive oil and says her kids love them!