Okay...so I was diagnosed with CC about 5 years ago. I was taking a daily dose of Indomethacin for cluster headaches. All of a sudden I was having horrible gut problems! Saw a GI who did an endoscopy and colonoscopy and came back with the diagnosis of CC. Doc said to stop the Indomethacin (as it is an NSAID). I did and thank God, the diarrhea went away.
Until about 3 months ago. Since then, the problems have come back worse than ever. Tried Immodium (many times a day) and Pepto. Doctor put me on Lomotil (to no avail) and also a course of Endocort. Went back to GI about 2 weeks ago for an exam. When she pushed on my abdomen on the lower left side I about shot off the table from the pain! She gave me about 4 months worth of Lialda. She was concerned that the inflammation might be so bad they wouldn't be able to scope me effectively.
Talked to her last week. Have been upping my fluids and trying to keep up my electrolytes, but I have lost 10 pounds in about a month and a half and have had serious symptoms of dehydration, almost requiring an ER visit. SO...my doctor wanted me to get in ASAP for a scope, which I had yesterday. Doctor noticed a lot of inflammation and redness where the pain was and I'm waiting for results for the biopsy.
So anyway, my doctor said to stay on the Lialda, keep taking the Immodium and then he prescribed Tincture of Opium (Laudanum), which I had NEVER heard of being prescribed for anything. Has anyone else every been prescribed this? If so, does it help? I'm still having 20+ BMs per day and feel weak and tired all the time. Thanks for the help! Am really glad to have found this forum!
Another Newbie - Question About Medications...NOTHING WORKS!
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Another Newbie - Question About Medications...NOTHING WORKS!
"Cogito, ergo sum" - René Descartes
Hi Carrie Ann,
Welcome to the board. The Laudnum is for pain, but a side effect is reduced motility. The problem with using an opioid is that it can lead to compaction issues, which can become life-threatening in some cases, (besides the addiction risk).
Are you taking any other medications that could be causing the inflammation - any PPIs, SSRIs, bisphosphonates, statins, beta blockers, etc., for example? If your symptoms are not drug-induced, and Entocort doesn't work, about the only practical medication option left is one of the newer 5-ASA meds, (mesalamine-based), such as Lialda or Apriso. If you use one of the older 5-ASA meds, try Colazal or Pentasa, rather than Asacol. The problem with Asacol, (including the newer HD Asacol version), is that it contains lactose, to which many of us are sensitive.
If Entocort, or the mesalamine-based meds won't work, about the only practical remaining option is diet changes. Virtually all of us are sensitive to gluten, and most of us are also sensitive to casein, the primary protein in all dairy products. About half of us are also sensitive to soy. By cutting those foods out of our diet, 100%, many of us have been in stable remission for years. Of course, most GI specialists don't realize that the disease can be controlled by diet alone, and many of them will mistakenly argue that diet has nothing to do with CC. The truth is, diet has everything to do with CC, and food sensitivities are the cause of the inflammation in the first place. Remove the foods that you are sensitive to, and the inflammation will slowly fade away. It takes a while for the gut to heal, though, and so remission will not happen overnight. It usually takes months to recover, especially if the intestinal damage has been accumulating for years.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. The Laudnum is for pain, but a side effect is reduced motility. The problem with using an opioid is that it can lead to compaction issues, which can become life-threatening in some cases, (besides the addiction risk).
Are you taking any other medications that could be causing the inflammation - any PPIs, SSRIs, bisphosphonates, statins, beta blockers, etc., for example? If your symptoms are not drug-induced, and Entocort doesn't work, about the only practical medication option left is one of the newer 5-ASA meds, (mesalamine-based), such as Lialda or Apriso. If you use one of the older 5-ASA meds, try Colazal or Pentasa, rather than Asacol. The problem with Asacol, (including the newer HD Asacol version), is that it contains lactose, to which many of us are sensitive.
If Entocort, or the mesalamine-based meds won't work, about the only practical remaining option is diet changes. Virtually all of us are sensitive to gluten, and most of us are also sensitive to casein, the primary protein in all dairy products. About half of us are also sensitive to soy. By cutting those foods out of our diet, 100%, many of us have been in stable remission for years. Of course, most GI specialists don't realize that the disease can be controlled by diet alone, and many of them will mistakenly argue that diet has nothing to do with CC. The truth is, diet has everything to do with CC, and food sensitivities are the cause of the inflammation in the first place. Remove the foods that you are sensitive to, and the inflammation will slowly fade away. It takes a while for the gut to heal, though, and so remission will not happen overnight. It usually takes months to recover, especially if the intestinal damage has been accumulating for years.
Again, welcome aboard, and please feel free to ask anything.
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 so much Tex! Yeah, I had never heard about the food sensitivity thing until I happened to be poking around on the internet over the weekend and found a couple of sites including this one. Currently I am on the Lialda (2.4 g/day) and will be following up with my GI next week.
Aside from the testing from EnteroLab (which I will definitely do when I have a little more cash), how do you find out about food sensitivities? Just start following a gluten-free diet and see if it helps matters? I have repeatedly tested negative for Celiac's, but I guess that doesn't necessarily mean anything...
Thanks!!
Carrie
Aside from the testing from EnteroLab (which I will definitely do when I have a little more cash), how do you find out about food sensitivities? Just start following a gluten-free diet and see if it helps matters? I have repeatedly tested negative for Celiac's, but I guess that doesn't necessarily mean anything...
Thanks!!
Carrie
"Cogito, ergo sum" - René Descartes
Carrie,
The blood tests will only detect fully-developed celiac disease. The type of gluten-sensitivity that we have can only be detected by stool tests, (since that's where the antibodies are). Mediator release testing, (MRT), is also helpful for tracking down food sensitivities that the Enterolab tests do not cover. Here's a forum about MRT testing:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=66
If you do an elimination diet correctly, it will work, but eliminating only gluten from the diet seldom works, because most of us are sensitive to more than one food, and as long as we continue to eat even a single food to which we are sensitive, we will continue to react, and so we can't tell if eliminating gluten is helping or not. Here's the correct way to do an elimination diet:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732
Tex
The blood tests will only detect fully-developed celiac disease. The type of gluten-sensitivity that we have can only be detected by stool tests, (since that's where the antibodies are). Mediator release testing, (MRT), is also helpful for tracking down food sensitivities that the Enterolab tests do not cover. Here's a forum about MRT testing:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=66
If you do an elimination diet correctly, it will work, but eliminating only gluten from the diet seldom works, because most of us are sensitive to more than one food, and as long as we continue to eat even a single food to which we are sensitive, we will continue to react, and so we can't tell if eliminating gluten is helping or not. Here's the correct way to do an elimination diet:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732
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,
Thanks again! I see my GI tomorrow...I saw some earlier discussions about SNRIs. Currently I take Cymbalta for depression/anxiety and I've tried about 8 different antidepressants, so I'm REALLY reluctant to switch. I'm not on any SSRIs, but I had taken them in the past (years ago). Is the verdict still out on those?
Since all the tests appear to be kind of expensive, I will probably just jump in feet first with the elimination diet and see how it goes. I guess that will tell me for sure!!
Thanks again! I see my GI tomorrow...I saw some earlier discussions about SNRIs. Currently I take Cymbalta for depression/anxiety and I've tried about 8 different antidepressants, so I'm REALLY reluctant to switch. I'm not on any SSRIs, but I had taken them in the past (years ago). Is the verdict still out on those?
Since all the tests appear to be kind of expensive, I will probably just jump in feet first with the elimination diet and see how it goes. I guess that will tell me for sure!!
"Cogito, ergo sum" - René Descartes
Carrie,
There are many different ways to develop MC, and so the cause of our MC is an individual issue. I would say that the odds are very high that the SNRIs will eventually be shown to cause MC for some individuals, but that doesn't mean that they will trigger MC for all of us, or for any particular individual. That risk probably depends on our genetics, our gut bacteria, the particular SNRI in question, and a few other things. The human body is a very complex machine, and we're all different.
At some point down the line, if you haven't had any luck with diet changes, nor anything else that you've tried, then it might be time to suspect the SNRI. It usually takes at least several weeks for the body to eliminate drugs of that type, so avoiding it for just a couple of days or so, might or might not tell you anything, depending on how powerful an effect it has on your immune system.
Good luck with the elimination diet. Please don't hesitate to ask questions, anytime you encounter anything that you're not sure about - it's much better to ask, than to suffer in silence.
Tex
There are many different ways to develop MC, and so the cause of our MC is an individual issue. I would say that the odds are very high that the SNRIs will eventually be shown to cause MC for some individuals, but that doesn't mean that they will trigger MC for all of us, or for any particular individual. That risk probably depends on our genetics, our gut bacteria, the particular SNRI in question, and a few other things. The human body is a very complex machine, and we're all different.
At some point down the line, if you haven't had any luck with diet changes, nor anything else that you've tried, then it might be time to suspect the SNRI. It usually takes at least several weeks for the body to eliminate drugs of that type, so avoiding it for just a couple of days or so, might or might not tell you anything, depending on how powerful an effect it has on your immune system.
Good luck with the elimination diet. Please don't hesitate to ask questions, anytime you encounter anything that you're not sure about - it's much better to ask, than to suffer in silence.
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.