Tex,
You are such a wealth of information. I can't tell you how much I appreciate your responses. I did do a fecal count/malabsorption test last May and it showed I have a high count of malabsorbing fats. Although I have not lost any weight, which is a blessing. My Gastro does not think it that the malabsorption has anything to do with the mc (which I think is crazy).
I have been on Humira for about 4 years now. My dr had me on sulfisalizine but it made me so sick and then we discovered that liver enzymes were still elevated. When they investigated why we found out that I had a 7 cm cyst on it and then they found out that my Gallbladder wasn't functioning properly. When I had my Gallbladder removed in 2006 they did a biopsy on my liver and it showed that I have chronic Cholecystistis. Then my Rhum. put me on Humira because the I have the arthritis in over 5 places and he did not want to put me on methotrexate b/c of the Cholecystistis. I have done alright so far on the Humira, it got rid of my psoriasis completely (it was everywhere) and my fingers don't ache so much. Apparently it is really bad in my lower back, but I have never had any pain there. He says it is b/c I am extremely active and muscles are supporting me. I run 5 miles a day, lift weights, bike and walk everyday. Yes all inside on a treadmill (too many pit stops).
I go see my Gastro next week and will definitely ask him about Entrocort. I am really hoping that I can get on this and it will work.
Thanks again Tex.
Rose
New Here
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Rose,
Thanks for the extra information, that makes it a lot easier to understand your situation. First off, I agree with you that your GI doc is totally wrong if he claims that your malabsorption is not due to MC. The only other ways that you could have malabsorption issues would be if you had Crohn's disease, (not likely, since that's rather easy to diagnose), celiac disease, (definitely a possibility, but a moot point if you have MC), or if you've had gastric bypass surgery that included bypassing part or all of your duodenum.
The fact that you still have significant small intestinal damage, certainly suggests that you might still be accidentally ingesting gluten on a regular basis, or healing could be prevented by some other food intolerance that you haven't discovered yet. Theoretically, you could be refreactive to treatment, in the same sense that some celiacs are refractive to the GF diet, but Dr. Fine claims that virtually all cases of refractory sprue, are due to the presence of MC, and additional food intolerances, and I can see no reason to disagree with that position.
The problem with sulfasalazine, is that it has two strikes against it, as far as patients with MC are concerned. First, it's formed from salicylic acid, the active ingredient in aspirin, and an antibiotic, sulfapyridine. Aspirin, (and all other NSAIDs, of course), is contraindicated for MC, since NSAIDs are known to trigger MC, and sulfapyridine, of course, is a sulfa drug, and some of us are intolerant of sulfa drugs. I've never figured out why so many of the medications prescribed by GI docs for treating MC, (and the other IBDs), are either formulated from active ingredients that are derivatives of known triggers for MC, or they contain inactive ingredients that are known intolerances for people with an IBD, (such as lactose). It seems that the pharmaceutical companies and many doctors either don't care, or they simply don't know what they're doing - they just don't bother to think sometimes, before acting. In the case of the pharmaceutical companies, I really believe that they don't give a hoot, as long as they can sell a drug, they'll make it, and they'll promote it.
Hmmmmmm. I see your point about the Humira. I agree that it's probably a better choice than methotrexate, and as long as it hasn't caused any problems in four years, you may be OK with it, as long as you're careful. The problem with stopping the use of it, is that your psoriasis would probably return, along with more arthritis symptoms. I agree with you that exercise is very important for helping to reduce arthritis symptoms, and it also probably helps the body to properly utilize meds, and to purge the bad stuff, that needs to be removed, in order to minimize side effects.
Your doc, of course, would need to carefully evaluate your liver situation, before he prescribes Entocort, and if you do start taking it, your liver function would need to be monitored regularly, but you're probably doing that already.
Theoretically, the Humira should be controlling your MC symptoms. The fact that it isn't, suggests that your symptoms may be from something other than an autoimmune cause. Your D may be due to a med that you're taking, for example.
Are you by any chance taking any NSAIDs, sulpha drugs, selective serotonin reuptake inhibitors, (SSRIs), or proton-pump inhibitors, (PPIs)?
As always, you're most welcome.
Tex
Thanks for the extra information, that makes it a lot easier to understand your situation. First off, I agree with you that your GI doc is totally wrong if he claims that your malabsorption is not due to MC. The only other ways that you could have malabsorption issues would be if you had Crohn's disease, (not likely, since that's rather easy to diagnose), celiac disease, (definitely a possibility, but a moot point if you have MC), or if you've had gastric bypass surgery that included bypassing part or all of your duodenum.
The fact that you still have significant small intestinal damage, certainly suggests that you might still be accidentally ingesting gluten on a regular basis, or healing could be prevented by some other food intolerance that you haven't discovered yet. Theoretically, you could be refreactive to treatment, in the same sense that some celiacs are refractive to the GF diet, but Dr. Fine claims that virtually all cases of refractory sprue, are due to the presence of MC, and additional food intolerances, and I can see no reason to disagree with that position.
The problem with sulfasalazine, is that it has two strikes against it, as far as patients with MC are concerned. First, it's formed from salicylic acid, the active ingredient in aspirin, and an antibiotic, sulfapyridine. Aspirin, (and all other NSAIDs, of course), is contraindicated for MC, since NSAIDs are known to trigger MC, and sulfapyridine, of course, is a sulfa drug, and some of us are intolerant of sulfa drugs. I've never figured out why so many of the medications prescribed by GI docs for treating MC, (and the other IBDs), are either formulated from active ingredients that are derivatives of known triggers for MC, or they contain inactive ingredients that are known intolerances for people with an IBD, (such as lactose). It seems that the pharmaceutical companies and many doctors either don't care, or they simply don't know what they're doing - they just don't bother to think sometimes, before acting. In the case of the pharmaceutical companies, I really believe that they don't give a hoot, as long as they can sell a drug, they'll make it, and they'll promote it.
Hmmmmmm. I see your point about the Humira. I agree that it's probably a better choice than methotrexate, and as long as it hasn't caused any problems in four years, you may be OK with it, as long as you're careful. The problem with stopping the use of it, is that your psoriasis would probably return, along with more arthritis symptoms. I agree with you that exercise is very important for helping to reduce arthritis symptoms, and it also probably helps the body to properly utilize meds, and to purge the bad stuff, that needs to be removed, in order to minimize side effects.
Your doc, of course, would need to carefully evaluate your liver situation, before he prescribes Entocort, and if you do start taking it, your liver function would need to be monitored regularly, but you're probably doing that already.
Theoretically, the Humira should be controlling your MC symptoms. The fact that it isn't, suggests that your symptoms may be from something other than an autoimmune cause. Your D may be due to a med that you're taking, for example.
Are you by any chance taking any NSAIDs, sulpha drugs, selective serotonin reuptake inhibitors, (SSRIs), or proton-pump inhibitors, (PPIs)?
As always, 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.
Tex,
Thanks for your reply. The only other thing I take on a daily basis is Citalopram for depression. The other weird thing that is happening lately is that the Humira injections are causing d and leaks. The last three times I took an injection (last night included) I have been in the bathroom with explosive d and have had leaks. It used to be that when we did an injection the d would subside for a couple of days. I go see my GI this Thursday to discuss the Mayo Clinic thing (I am scheduled to go there on 2/17 in Jacksonville) and I see my Rhum next Wednesday. This is so frustrating.
Rose
Thanks for your reply. The only other thing I take on a daily basis is Citalopram for depression. The other weird thing that is happening lately is that the Humira injections are causing d and leaks. The last three times I took an injection (last night included) I have been in the bathroom with explosive d and have had leaks. It used to be that when we did an injection the d would subside for a couple of days. I go see my GI this Thursday to discuss the Mayo Clinic thing (I am scheduled to go there on 2/17 in Jacksonville) and I see my Rhum next Wednesday. This is so frustrating.
Rose
Rose,
The Citalopram is an SSRI, of course, and I have a strong suspicion that it could be causing your chronic D issues, especially if you have been taking it for most of the time since your D began. I'm kind of surprised that none of your doctors have caught this. Is there another suitable antidepressant that you could try, to see if it would do the job, without triggering your MC, and causing D?
I'm much more concerned about your reactions to the Humira injections, however. I've done a fairly extensive search, and I cannot find any "official" references to D, as a possible side effect for Humira treatments, but you are obviously having a rather severe, adverse reaction to it. Please discuss this with both your GI doc, and your rheumatologist. As you mentioned, a normal reaction would be for the D to subside for at least a few days. Explosive D, following every recent treatment, is definitely a sign that something has changed, and IMO, this needs urgent attention.
Good luck with your doctor visits, and please keep us updated on any developments, and how you are doing.
Tex
The Citalopram is an SSRI, of course, and I have a strong suspicion that it could be causing your chronic D issues, especially if you have been taking it for most of the time since your D began. I'm kind of surprised that none of your doctors have caught this. Is there another suitable antidepressant that you could try, to see if it would do the job, without triggering your MC, and causing D?
I'm much more concerned about your reactions to the Humira injections, however. I've done a fairly extensive search, and I cannot find any "official" references to D, as a possible side effect for Humira treatments, but you are obviously having a rather severe, adverse reaction to it. Please discuss this with both your GI doc, and your rheumatologist. As you mentioned, a normal reaction would be for the D to subside for at least a few days. Explosive D, following every recent treatment, is definitely a sign that something has changed, and IMO, this needs urgent attention.
Good luck with your doctor visits, and please keep us updated on any developments, and how you are doing.
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.
Rose,
You're most welcome. You've been suffering for a long time. I'm hoping that with a few changes of your medications, in a few weeks you'll be enjoying remission.
Tex
You're most welcome. You've been suffering for a long time. I'm hoping that with a few changes of your medications, in a few weeks you'll be enjoying remission.
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,
I hope so. I did talk to my GP's office and they want me to taper off on the SSRI. I cut my dose by half for a week and then the 1/2 dose every other day for 2 weeks. I don't know what else is out there to take, but I am hoping that I will not need to take anything. I am not depressed, I just get real anxious. Its the Italian in me.
Rose
I hope so. I did talk to my GP's office and they want me to taper off on the SSRI. I cut my dose by half for a week and then the 1/2 dose every other day for 2 weeks. I don't know what else is out there to take, but I am hoping that I will not need to take anything. I am not depressed, I just get real anxious. Its the Italian in me.
Rose
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Marguerite Rose
- Posts: 2
- Joined: Sun Feb 15, 2009 8:03 pm
- Location: Virginia
Hello Everyone,
I was diagnosed last month with LC and have not had my prescription for Asacol filled yet after asking the pharmacist about side effects which sounded worse that what I deal with! I am glad to have found you all as I did a Google search for colitis and celiac disease. A coworker thought I should try GF for a week or so and see if I felt better. After reading some of the posts here it seems as if he may be on to something. I have never liked the drugs that are passed out like candy by the medical industry and am thinking I have the right idea.
I was diagnosed last month with LC and have not had my prescription for Asacol filled yet after asking the pharmacist about side effects which sounded worse that what I deal with! I am glad to have found you all as I did a Google search for colitis and celiac disease. A coworker thought I should try GF for a week or so and see if I felt better. After reading some of the posts here it seems as if he may be on to something. I have never liked the drugs that are passed out like candy by the medical industry and am thinking I have the right idea.
Maggie
Hi Maggie,
Welcome to our internet family. I'm sorry that you have the disease, but I'm glad you found us, because you are correct that many of us here are able to completely control our symptoms by diet alone, even though most GI docs will steadfastly argue that diet has nothing to do with it. To show you how hard-headed many GI docs are - some of our members have used diet to achieve remission, and the next time they saw their GI doc, he actually told them that they were confused, and they should go back to eating gluten, and everything else they had removed from their diets. Well duh! What does it take to convince them?
Some of us who have really severe cases, have found that Entocort will make life much easier while trying to fine-tune our diet, but for most of us, unless we have many, many intolerances, the diet alone will bring remission in a "reasonable" amount of time, if we are diligent about what we eat. Remission will often come faster, of course, if Entocort is used, and then after the gut has had time to heal, it can be tapered off, and completely discontinued. Asacol, will bring remission for a few people with MC, but it does better as a "maintenance" med, after remission is achieved by some other means.
Actually, it takes much longer than a "week or so" on the diet, to achieve remission with MC, (though some of us see improvement in a week or so - most of us take much longer, unfortunately). MC is much more difficult to bring to remission than celiac disease, though the treatment is much the same. IOW, if you have both MC and celiac disease, (as several of our members do), you treat the MC, and the celiac sprue will be automatically resolved in the process, (as will a lot of other autoimmune issues). Most of us can expect to take from 3 to 6 months to achieve remission, and a few take a year or longer. Of course, there are a few who are luckier, and they sometimes achieve remission sooner than the norm.
Again, welcome aboard, and feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. I'm sorry that you have the disease, but I'm glad you found us, because you are correct that many of us here are able to completely control our symptoms by diet alone, even though most GI docs will steadfastly argue that diet has nothing to do with it. To show you how hard-headed many GI docs are - some of our members have used diet to achieve remission, and the next time they saw their GI doc, he actually told them that they were confused, and they should go back to eating gluten, and everything else they had removed from their diets. Well duh! What does it take to convince them?
Some of us who have really severe cases, have found that Entocort will make life much easier while trying to fine-tune our diet, but for most of us, unless we have many, many intolerances, the diet alone will bring remission in a "reasonable" amount of time, if we are diligent about what we eat. Remission will often come faster, of course, if Entocort is used, and then after the gut has had time to heal, it can be tapered off, and completely discontinued. Asacol, will bring remission for a few people with MC, but it does better as a "maintenance" med, after remission is achieved by some other means.
Actually, it takes much longer than a "week or so" on the diet, to achieve remission with MC, (though some of us see improvement in a week or so - most of us take much longer, unfortunately). MC is much more difficult to bring to remission than celiac disease, though the treatment is much the same. IOW, if you have both MC and celiac disease, (as several of our members do), you treat the MC, and the celiac sprue will be automatically resolved in the process, (as will a lot of other autoimmune issues). Most of us can expect to take from 3 to 6 months to achieve remission, and a few take a year or longer. Of course, there are a few who are luckier, and they sometimes achieve remission sooner than the norm.
Again, welcome aboard, and 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.
WELCOME MAGGIE!!! 
I agree with everything Tex has written. I was initially reluctant to take Entocort, but when I didn't see any changes after being gluten free for a month, I decided to try medication. After 3-4 weeks of being on Entocort, I had a formed stool. I haven't had any side effects from using it, unlike Prednisone.
Once I had the stool testing for antibodies through Enterolab (http://www.enterolab.com,) I realized that I had more food intolerances besides gluten, which explained why eliminating gluten alone didn't resolve my MC.
Presently I am maintaining remission using a combination of diet and 1 pill of Entocort per day. I am hoping to be off of Entocort completely in the near future.
Whatever course you choose to deal with your MC, you will receive support here. As Tex mentioned, some here choose to use diet alone, some use medications and some use a combination. Feel free to ask any questions and be sure to read the Information section located here: http://www.perskyfarms.com/phpBB2/index.php?c=4
Gloria
I agree with everything Tex has written. I was initially reluctant to take Entocort, but when I didn't see any changes after being gluten free for a month, I decided to try medication. After 3-4 weeks of being on Entocort, I had a formed stool. I haven't had any side effects from using it, unlike Prednisone.
Once I had the stool testing for antibodies through Enterolab (http://www.enterolab.com,) I realized that I had more food intolerances besides gluten, which explained why eliminating gluten alone didn't resolve my MC.
Presently I am maintaining remission using a combination of diet and 1 pill of Entocort per day. I am hoping to be off of Entocort completely in the near future.
Whatever course you choose to deal with your MC, you will receive support here. As Tex mentioned, some here choose to use diet alone, some use medications and some use a combination. Feel free to ask any questions and be sure to read the Information section located here: http://www.perskyfarms.com/phpBB2/index.php?c=4
Gloria
You never know what you can do until you have to do it.
Maggie, I'm glad you found us. There is a wealth of information and support here.I am controlling my LC with diet alone. Please try going GF. I think it will help you. In addition to the great info on this site here is a gluten primer.
http://www.webmd.com/diet/slideshow-gluten-free-diet
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
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Marguerite Rose
- Posts: 2
- Joined: Sun Feb 15, 2009 8:03 pm
- Location: Virginia
Thank You
Thank you Tex and everyone for your warm welcome. Well I tried the GF thing and that didn't control the symptoms as much as I had hoped. I really don't suffer all that much, am able to go to work every day and don't feel as though I have to locate a bathroom wherever I am. The rectal pain is the most annoying part of this disease, thank goodness that occurs very seldom. Does Entocort help that? If not, do any of you have any ideas?
Maggie
Hi Maggie,
It usually takes the diet at least several months to begin to relieve the symptoms. Complete remission typically takes about 6 months, though it takes some of us as long as a year or more. It depends on how much damage has accrued to your intestines, (the greater the damage, the longer it takes to heal), and how many other food intolerances must be discovered, and removed from your diet. Many of us take Entocort in the meantime, in order to reduce the symptoms, while the gut is healing.
If the pain you're referring to is due to cramps, yes, Entocort should help to relieve it.
Tex
It usually takes the diet at least several months to begin to relieve the symptoms. Complete remission typically takes about 6 months, though it takes some of us as long as a year or more. It depends on how much damage has accrued to your intestines, (the greater the damage, the longer it takes to heal), and how many other food intolerances must be discovered, and removed from your diet. Many of us take Entocort in the meantime, in order to reduce the symptoms, while the gut is healing.
If the pain you're referring to is due to cramps, yes, Entocort should help to relieve it.
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.