Hey Everyone!
Since it's been a while since I've posted I thought I would check in. Hope everyone is doing A-ok! is
I've got a quick question-- I've been doing pretty good, down to 2 Entocort a day (vs. the three I was taking) and the diarrhea seems to be under pretty good control. I hope to be weaning down to 1 Entocort after the holidays are over.
Anyway, not to sound like a whiner, but lately the stomach cramps are REALLY bad. I mean, double-over-when-they-hit kind of cramps. I am taking 4-5 20mg tablets of Bentyl daily, and have become quite friendly with my heating pad at my desk at work. If I don't stay on top of them with the Bentyl it gets much worse.....the Bentyl does help, but is not completely taking the pain away.
Naturally I am still gluten/soy/dairy free, so I don't think the diet I am eating could be causing it.
I went to the gastro for my 6 month checkup the other day and told him about this, and he wanted me to try taking 2 Imodium a day to help with the cramping. So far, no dice....still the same. He told me to touch base with him in a week and see how it's going.
So, I guess after all this, my question is....will Imodium help with these cramps? Am I just being impatient, or are there other meds out there that others have had better luck with?
I guess I am reaching my limit on patience with these cramps.....no fun at all!
Thanks in advance for any suggestions!
Happy Holidays to Everyone.....finding this community has been one of the best presents ever!
Truly, I would be very lost with you!
~Jillian
Checking in/question too!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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jillian357
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Hi Jill,
I read your post earlier today, and then had to go run some errands, so I've been thinking about your situation most of the afternoon. Back when I was still reacting, I just assumed those cramps came with the territory, and so I never tried to do anything to stop them. When they struck, I just doubled up, gritted my teeth, and hoped that they would pass, without rupturing my gut, or tearing anything else loose.
Thankfully, it's been years, since I've experienced that feeling.
Since things such as dehydration, and salt and/or potassium deficiency, can cause cramps in various muscles in the body, be sure that you're not having any of those problems. Frankly, I doubt that any of those are causing the problem, though - most likely, the cramps are simply a part of the reaction cycle for MC.
Sheila is correct, of course, Imodium is an antispasmotic.
Dicyclomine and hyoscyamine are other examples of antispasmodics, and they work by blocking the action of acetylcholine at parasympathetic sites in smooth muscle, (IOW, they prevent the corrupted nerve signals from reaching the muscles, which effectively prevents the spasms from occurring, or at least reduces them). Bentyl, for example, is a brand name for dicyclomine, so you are already taking dicyclomine.
Peppermint oil has been traditionally been used as an antispasmodic, but like dicyclomine and hyoscyamine, it can worsen gastroesophageal reflux disease, (GERD), so be careful if you have any of the symptoms of GERD.
Mebeverine HCl is a musculotropic antispasmodic drug without the side-effects of the other treatments mentioned above. It's marketed as Colofac, Duspatal and Duspatalin.
Lomotil works similarily to Imodium, but it is available by prescription only.
Okay, that said, here is my interpretation of what I think is happening. The cramps are most likely an indication that you are having an all-out MC reaction - that is to say, even though you may not have D, the cramps suggest that you are experiencing significant inflammation in your intestines. This might be an indication that your entocort dosage is not sufficient, but it also might have nothing to do with it.
The question is, are the cramps something new? Did you have them before, while taking Entocort? Did you have them before you started taking Entocort? If you had them, were the not as bad as they are now?
The reason I ask, is because in my own experience, my reactions came in cycles, and the worst cramps usually came as the bloating was starting to "break up", and the gas, or "pockets" of gas, were starting to move down the line, so that they were eventually purged. As they were purged, over the next day or so, of course, the cycle ended, and I felt great for a few days, until the cycle started over. I'm not sure that scenario happens, though, with people who have continuous D, rather than alternating D and C, as was the case with me.
Love,
Tex
I read your post earlier today, and then had to go run some errands, so I've been thinking about your situation most of the afternoon. Back when I was still reacting, I just assumed those cramps came with the territory, and so I never tried to do anything to stop them. When they struck, I just doubled up, gritted my teeth, and hoped that they would pass, without rupturing my gut, or tearing anything else loose.
Thankfully, it's been years, since I've experienced that feeling.Since things such as dehydration, and salt and/or potassium deficiency, can cause cramps in various muscles in the body, be sure that you're not having any of those problems. Frankly, I doubt that any of those are causing the problem, though - most likely, the cramps are simply a part of the reaction cycle for MC.
Sheila is correct, of course, Imodium is an antispasmotic.
Dicyclomine and hyoscyamine are other examples of antispasmodics, and they work by blocking the action of acetylcholine at parasympathetic sites in smooth muscle, (IOW, they prevent the corrupted nerve signals from reaching the muscles, which effectively prevents the spasms from occurring, or at least reduces them). Bentyl, for example, is a brand name for dicyclomine, so you are already taking dicyclomine.
Peppermint oil has been traditionally been used as an antispasmodic, but like dicyclomine and hyoscyamine, it can worsen gastroesophageal reflux disease, (GERD), so be careful if you have any of the symptoms of GERD.
Mebeverine HCl is a musculotropic antispasmodic drug without the side-effects of the other treatments mentioned above. It's marketed as Colofac, Duspatal and Duspatalin.
Lomotil works similarily to Imodium, but it is available by prescription only.
Okay, that said, here is my interpretation of what I think is happening. The cramps are most likely an indication that you are having an all-out MC reaction - that is to say, even though you may not have D, the cramps suggest that you are experiencing significant inflammation in your intestines. This might be an indication that your entocort dosage is not sufficient, but it also might have nothing to do with it.
The question is, are the cramps something new? Did you have them before, while taking Entocort? Did you have them before you started taking Entocort? If you had them, were the not as bad as they are now?
The reason I ask, is because in my own experience, my reactions came in cycles, and the worst cramps usually came as the bloating was starting to "break up", and the gas, or "pockets" of gas, were starting to move down the line, so that they were eventually purged. As they were purged, over the next day or so, of course, the cycle ended, and I felt great for a few days, until the cycle started over. I'm not sure that scenario happens, though, with people who have continuous D, rather than alternating D and C, as was the case with me.
Love,
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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jillian357
- Adélie Penguin
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- Joined: Sun May 04, 2008 2:23 pm
- Location: Ohio
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Morning Tex!
Thanks so much for the informative reply.......we are all so lucky to benefit from your experience & wisdom!
Ok, to answer your questions....yes, since taking the Entocort I have had cramps on and off the entire time. I would say the severity is probably about the same as when this whole thing started, but they are more frequent now. Approx 2-3 months ago I noticed that I would have awful pain before a bowel movement, but once I did they would pass. My bowel movements have been pretty normal, no diarrhea...but the pain would be very intense before having them.
Lately the cramps just appear out of nowhere, probably 3-4 times a day.....for example, this morning I had one cup of dry GF/Soy free cereal that I have eaten at least 50 times before. Within an hour of eating it as I was driving into work I was hit by the stomach gremlins again, and could barely walk up the two flights of stairs into my office. They get so intense that I can't even stand upright.
I had taken a Bentyl approx 30-40 minutes before I ate.
These darn things are making me not want to eat at all..which I know isn't really an option, but at least when I don't eat they don't seem to be as bad. I've been eating very bland stuff lately like white rice, plain chicken breast, etc.
I guess in my mind I thought a flare = diarrhea. Is it possible to be in a flare without the diarrhea?
Gosh, I still have SO much to learn about this disease.
Maybe I haven't been doing as well weaning off the Entocort as I thought I was.....
Thanks so much for helping me sort this all out!
Love,
Jill
Thanks so much for the informative reply.......we are all so lucky to benefit from your experience & wisdom!
Ok, to answer your questions....yes, since taking the Entocort I have had cramps on and off the entire time. I would say the severity is probably about the same as when this whole thing started, but they are more frequent now. Approx 2-3 months ago I noticed that I would have awful pain before a bowel movement, but once I did they would pass. My bowel movements have been pretty normal, no diarrhea...but the pain would be very intense before having them.
Lately the cramps just appear out of nowhere, probably 3-4 times a day.....for example, this morning I had one cup of dry GF/Soy free cereal that I have eaten at least 50 times before. Within an hour of eating it as I was driving into work I was hit by the stomach gremlins again, and could barely walk up the two flights of stairs into my office. They get so intense that I can't even stand upright.
I had taken a Bentyl approx 30-40 minutes before I ate.
These darn things are making me not want to eat at all..which I know isn't really an option, but at least when I don't eat they don't seem to be as bad. I've been eating very bland stuff lately like white rice, plain chicken breast, etc.
I guess in my mind I thought a flare = diarrhea. Is it possible to be in a flare without the diarrhea?
Gosh, I still have SO much to learn about this disease.
Maybe I haven't been doing as well weaning off the Entocort as I thought I was.....
Thanks so much for helping me sort this all out!
Love,
Jill
Hi Jill,
Yes, it's certainly possible to react with C, rather than D. To add even more confusion to the situation, though, if you're not having any D, I'm beginning to wonder if those cramps might be due to plain, old, ordinary C, (not due to inflammation, IOW). Maybe your original thoughts about weaning down the dose of Entocort is the correct course of action, after all. One of the listed side effects of Entocort EC is constipation, and in the past, other members have experienced this issue, and resolved it by reducing the dose. Bentyl also lists constipation as a possible side effect, (since it can possibly reduce motility too far, in some cases).
So, in light of the information in your last post, I suspect that you might indeed be better off eliminating the Bentyl, and reducing the Entocort dose. (This is assuming that you started taking the Bentyl to help reduce the cramping, rather than to reduce diarrhea.) With MC, there can sometimes be a fine line between D and C, and the signals can be confusing. And yes, you can have both within a rather short time frame, sometimes. Since less medication is always better than more medication, this is certainly worth a try, IMO. If it doesn't work, then you may have to boost the dose again, but I have a hunch that this is what is going on.
Also, after living so long with D, the colon can be very sensitive to the pressures imposed by the formation of normal BMs, (especially if some inflammation is still present), and it may have to re-learn how to accommodate those sensations, so that "normal" sensations are not over-emphasized to the extent that they cause undue pain, when they should actually only feel like normal urgency, indicating that a BM is needed. At least that's how I see it.
Love,
Tex
P. S. I forgot to mention - Bentyl contains lactose.
Yes, it's certainly possible to react with C, rather than D. To add even more confusion to the situation, though, if you're not having any D, I'm beginning to wonder if those cramps might be due to plain, old, ordinary C, (not due to inflammation, IOW). Maybe your original thoughts about weaning down the dose of Entocort is the correct course of action, after all. One of the listed side effects of Entocort EC is constipation, and in the past, other members have experienced this issue, and resolved it by reducing the dose. Bentyl also lists constipation as a possible side effect, (since it can possibly reduce motility too far, in some cases).
That's a classic description of constipation, (of course, unfortunately, it also fits many members' experiences during MC flares, but usually in those cases, D is present, not normal BMs).Jill wrote:Approx 2-3 months ago I noticed that I would have awful pain before a bowel movement, but once I did they would pass. My bowel movements have been pretty normal, no diarrhea...but the pain would be very intense before having them.
So, in light of the information in your last post, I suspect that you might indeed be better off eliminating the Bentyl, and reducing the Entocort dose. (This is assuming that you started taking the Bentyl to help reduce the cramping, rather than to reduce diarrhea.) With MC, there can sometimes be a fine line between D and C, and the signals can be confusing. And yes, you can have both within a rather short time frame, sometimes. Since less medication is always better than more medication, this is certainly worth a try, IMO. If it doesn't work, then you may have to boost the dose again, but I have a hunch that this is what is going on.
Also, after living so long with D, the colon can be very sensitive to the pressures imposed by the formation of normal BMs, (especially if some inflammation is still present), and it may have to re-learn how to accommodate those sensations, so that "normal" sensations are not over-emphasized to the extent that they cause undue pain, when they should actually only feel like normal urgency, indicating that a BM is needed. At least that's how I see it.
Love,
Tex
P. S. I forgot to mention - Bentyl contains lactose.
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.
Hello Jillian, I am new here, diagnosed two months ago and also started than with entocort. Before that only D, after that no D, but cramps, so I recognize what you are talking about. In your second message I saw it appears after eating gluten/soy free cereals. That is exactly when my problems with cramping started, when I started to eat gluten free bread, cereals and other stuff of the gluten free shell in the supermarket. Partly I had to do with my problems with corn. But I also have the idea it has to do with the insolvable fibers in these products or other added fibers. I even have the impression I have problems with brown rice.
I skipped all the gluten free products that replace the gluten versions, like crackers, bread, cereals. Instead of it I eat rice (even for breakfast) and rice crackers. It made a hugh difference for me. The cramping is over. Another advantage is, is saves me lots of money, rice and rice crackers is cheap food.
With fruit and vegetables, my experience it is a bit of trial and error.
Maybe my way doesn't work for everybody, but maybe it is worth to try. I have been reading messages here, saying the product of the gluten free shell still causes people with MC problems and brown rice problems I also saw in other messages here, same with some kind of fruits and vegetables. Everybody has is his or her own personal unique list.
I hope you find a solution for your cramping, I now how horrible it can be.
Harma
I skipped all the gluten free products that replace the gluten versions, like crackers, bread, cereals. Instead of it I eat rice (even for breakfast) and rice crackers. It made a hugh difference for me. The cramping is over. Another advantage is, is saves me lots of money, rice and rice crackers is cheap food.
With fruit and vegetables, my experience it is a bit of trial and error.
Maybe my way doesn't work for everybody, but maybe it is worth to try. I have been reading messages here, saying the product of the gluten free shell still causes people with MC problems and brown rice problems I also saw in other messages here, same with some kind of fruits and vegetables. Everybody has is his or her own personal unique list.
I hope you find a solution for your cramping, I now how horrible it can be.
Harma
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jillian357
- Adélie Penguin
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Morning Harma & Tex,
Thank you both very much for the information......and that you especially Tex for describing why it hurts so much before having a bowel movement. It makes perfect sense.
Harma, thanks for the heads up on the GF stuff...I will give that a try. White rice is definitely a staple in my diet, but I get sooo bored with it. However, I would much rather be bored than in pain!
Thank you both very much!
Take Care!
Love,
Jill
Thank you both very much for the information......and that you especially Tex for describing why it hurts so much before having a bowel movement. It makes perfect sense.
Harma, thanks for the heads up on the GF stuff...I will give that a try. White rice is definitely a staple in my diet, but I get sooo bored with it. However, I would much rather be bored than in pain!
Thank you both very much!
Take Care!
Love,
Jill
Harma,
Thanks for pointing that out. That's a very good observation.
Jill,
I believe that what Harma says about fiber, is probably a very important part of the pain that some of us experience, as we are recovering. As she pointed out, the type and amount of fiber in the diet can make a huge difference in the sensations that the intestines "feel", due to the texture of the stool. As we grow up, we slowly determine our favorite foods, and the intestines become accustomed to their texture and other physical attributes. When we drastically alter our diet, the physical changes in the stool, (mostly due to changes in the type/amount of fiber), are bound to have a significant effect on the sensations perceived by the intestines.
And, of course, a medication such as budesonide, probably makes a difference in the way that the intestines perceive the stool, also.
Love,
Tex
Thanks for pointing that out. That's a very good observation.
Jill,
I believe that what Harma says about fiber, is probably a very important part of the pain that some of us experience, as we are recovering. As she pointed out, the type and amount of fiber in the diet can make a huge difference in the sensations that the intestines "feel", due to the texture of the stool. As we grow up, we slowly determine our favorite foods, and the intestines become accustomed to their texture and other physical attributes. When we drastically alter our diet, the physical changes in the stool, (mostly due to changes in the type/amount of fiber), are bound to have a significant effect on the sensations perceived by the intestines.
And, of course, a medication such as budesonide, probably makes a difference in the way that the intestines perceive the stool, also.
Love,
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.