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Hi all,
The Dr. is weaning me off of the Entocort. I have been taking 1 a day for over a month with no problems, until now. Last week he added Asacol, 4-800 mg. pills a day, it's been 1 week since I started the Asacol. In three weeks I end the Endocort. This past week I have been nauseous, having pains in the head, constipated......until now. The BM's are changing, not D yet but they are getting there. The old familiar digestive pains are bothering me. The thing is the Dr. disregarded my Enterolab results, I'm sensitive to dairy, and the Asacol has lactose in it. So is the Asacol causing further damage to my CC undoing what the endocort calmed down?
I think I'm going to discontinue the Asacol. I don't know whether I will call the Dr. to let him know. I will have to think about it.
Why are some Dr.'s so stupid? Do they receive kickbacks from pharmaceutical companies?
That's my rant for the day. Hopefully I will feel better by this afternoon, I have a job interview and if I feel like I'm feeling now, I won't be at my best.
This site is great, thanks.
Susanne
one week on Asacol and that old familar problem is returning
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Zizzle,
All these years I was told I had IBS and thought that the D and other digestive issues that I was experiencing was related to stress. I was never tested for a lactose intolerance. I knew a had a sensitivity to eggs but didn't know until the Enterolab results about the gluten, dairy and soy intolerances. I just didn't know what was causing my symptoms and were told by numerous Drs. that no change in diet was needed
Nancy,
Thanks for the best wishes for the job interview, hopefully it will go well.
Susanne
All these years I was told I had IBS and thought that the D and other digestive issues that I was experiencing was related to stress. I was never tested for a lactose intolerance. I knew a had a sensitivity to eggs but didn't know until the Enterolab results about the gluten, dairy and soy intolerances. I just didn't know what was causing my symptoms and were told by numerous Drs. that no change in diet was needed
Nancy,
Thanks for the best wishes for the job interview, hopefully it will go well.
Susanne
Hi Susanne,
Asacol is the only mesalamine-based medication that contains lactose - there are many others that are lactose-free, including Lialda, Apriso, Colazal, Peneasa, etc. Many doctors automatically choose Asacol, because it is the oldest branded version, which means that it has the longest track record. The fact that Asacol's track record is marred by many patients who reacted adversely to it, never seems to bother those doctors - they just blindly continue to prescribe it, because to the best of their knowledge, it hasn't killed any of the patients under their care.
Try asking your doctor for a newer version of mesalamine. The newest brands are Lialda and Apriso, and they would eliminate the lactose issue.
Unfortunately, lactose isn't the only problem with the 5-ASA meds. 5-ASA stands for 5-aminosalicylic-acid, and salicylates belong to the NSAID family. The 5-ASA drugs seem to work fine for most patients - however, if NSAIDs trigger MC symptoms for you, then any of the mesalamine-based meds might also trigger your MC symptoms. My response in the thread at this link explains why:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14556
If this applies to you, and Asacol is triggering your MC symptoms, then yes, it is undoing all the good that Entocort and the diet have done, because it kick-starts your MC reactions again.
Good luck with your interview - I hope you're feeling much better by then.
Tex
Asacol is the only mesalamine-based medication that contains lactose - there are many others that are lactose-free, including Lialda, Apriso, Colazal, Peneasa, etc. Many doctors automatically choose Asacol, because it is the oldest branded version, which means that it has the longest track record. The fact that Asacol's track record is marred by many patients who reacted adversely to it, never seems to bother those doctors - they just blindly continue to prescribe it, because to the best of their knowledge, it hasn't killed any of the patients under their care.
Try asking your doctor for a newer version of mesalamine. The newest brands are Lialda and Apriso, and they would eliminate the lactose issue.
Unfortunately, lactose isn't the only problem with the 5-ASA meds. 5-ASA stands for 5-aminosalicylic-acid, and salicylates belong to the NSAID family. The 5-ASA drugs seem to work fine for most patients - however, if NSAIDs trigger MC symptoms for you, then any of the mesalamine-based meds might also trigger your MC symptoms. My response in the thread at this link explains why:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14556
If this applies to you, and Asacol is triggering your MC symptoms, then yes, it is undoing all the good that Entocort and the diet have done, because it kick-starts your MC reactions again.
Good luck with your interview - I hope you're feeling much better by then.
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, Tex. I was a big user of Advil and I also took Fosamax for many years and had a few Reclast infusions, so I know not to take nsaids and haven't taken them since I was diagnosed with CC.
I believe the Asacol is my problem, as some of my symptoms started pretty much when I started taking them a week ago. I even realized that the Asacol was probably the cause and dropped the dose to only 2 a day for the past two days. The change in BM's have only just started. It's not D yet but getting there. I haven't called the Dr. yet but I think I will.
How do I reply so you get a email notification like you sent me?
Thanks so much for the post. BTW, the basement smells great!!!
Susanne
I believe the Asacol is my problem, as some of my symptoms started pretty much when I started taking them a week ago. I even realized that the Asacol was probably the cause and dropped the dose to only 2 a day for the past two days. The change in BM's have only just started. It's not D yet but getting there. I haven't called the Dr. yet but I think I will.
How do I reply so you get a email notification like you sent me?
Thanks so much for the post. BTW, the basement smells great!!!
Susanne
I'm not sure that I understand your question, or if you're referring to an e-mail that I sent, or one that the system sent, (it would still have my name and e-mail address on it).Susanne wrote:How do I reply so you get a email notification like you sent me?
If you're referring to an e-mail notification from the system, advising you that you have a response to a post that you submitted on the board, the way to do that is to check, (by clicking on), the little "Notify me when a reply is posted" box, below the message-composing window, before you submit the post. The "Notify me when a reply is posted" option is the last one in the list of 5 options, just above, (and to the left of), the "Submit" button.
I'm glad that the basement treatment worked. Thanks for the feedback.
If you were asking about something else, please point me in the right direction, and I'll try to get it right next time.
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.
There is also an option in your profile, (under Preferences), that allows you to select the option to "Always notify me of replies:". If I remember correctly, when that option is activated, it preselects the box under the message-composing window, so that the system will automatically send you a notification of any response. You can deselect the box before you post a message, though, if you want. IOW, if you activate the option in your profile, you won't need to select the box under the message-composing window - it will automatically be selected by default, (unless you deselect it).
You're most welcome,
Tex
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.
Stopped the Asacol-still don't feel well.
Hi all,
I stopped the Asacol almost one week ago and remain on 1 Entocort a day. The D hasn't returned. I have so much excess gas and bloating that I don't feel well and the pattern of BM isn't the same.
My chiropractor/nutritionist changed my multi-vitamin about the same time that I started the Asacol. The chiropractor/nutritionist knows my food sensitivities, however, the multi she put me on contains lecithin from soybeans, I found that out last night when I read the label because I was so miserable and I have been very careful with meals. Is that the culprit that's screwing up the works? I emailed the company, Enzyme Process, and asked if the product is gluten free, they sent a response with a pdf about the product, but no where does it state that it is gluten free. On the label it says that the product is corn free, wheat free, dairy free, egg free, yeast free and no artificial colors, flavors or preservatives. The chiropractor/nutritionist wants me to start taking a supplemental drink that will help calm the colon and a probiotic. I am afraid to do that now. I fear the Asacol and the lecithin undid everything the Entocort did and that getting the D again is going to be sooner than later.
As for my job interview, I did not get the full time job I interviewed for but they offered me a part time position, 20 hours a week 2 to 6 PM. I took it to get my foot in the door and especially because if the D starts to resurface, it "usually" is a morning ordeal or at least it had been, and I used to feel so sick afterward, I wouldn't be at my best.
As always, thanks for any suggestions and for "listening".
Susanne
I stopped the Asacol almost one week ago and remain on 1 Entocort a day. The D hasn't returned. I have so much excess gas and bloating that I don't feel well and the pattern of BM isn't the same.
My chiropractor/nutritionist changed my multi-vitamin about the same time that I started the Asacol. The chiropractor/nutritionist knows my food sensitivities, however, the multi she put me on contains lecithin from soybeans, I found that out last night when I read the label because I was so miserable and I have been very careful with meals. Is that the culprit that's screwing up the works? I emailed the company, Enzyme Process, and asked if the product is gluten free, they sent a response with a pdf about the product, but no where does it state that it is gluten free. On the label it says that the product is corn free, wheat free, dairy free, egg free, yeast free and no artificial colors, flavors or preservatives. The chiropractor/nutritionist wants me to start taking a supplemental drink that will help calm the colon and a probiotic. I am afraid to do that now. I fear the Asacol and the lecithin undid everything the Entocort did and that getting the D again is going to be sooner than later.
As for my job interview, I did not get the full time job I interviewed for but they offered me a part time position, 20 hours a week 2 to 6 PM. I took it to get my foot in the door and especially because if the D starts to resurface, it "usually" is a morning ordeal or at least it had been, and I used to feel so sick afterward, I wouldn't be at my best.
As always, thanks for any suggestions and for "listening".
Susanne
Susanne,
That's good news about the part-time job. Here's hoping it leads to good things, and that you'll be healing soon to face even bigger adventures...
I would not take any supplement that you are not 100% sure of. Wheat-free and gluten-free are NOT the same thing, as I recently discovered due to careless label reading (barley malt in a sublingual B-12, darnit!). While you're symptomatic, you're not absorbing these expensive supplements in an optimal manner anyway, so why take a chance?
I had to replace my B and D vitamins, eventually. But I went without any supplements at all for a while, and have been able to add back carefully. Every single thing you take adds risk - even if it does not contain gluten or soy, it may contain a mystery ingredient you haven't yet discovered you react to. I think many "colon-calming" supplements are more likely to mess us up than help. And we have a very mixed bag of experience with probiotics - some folks have found them helpful, some have found them useless, and some have found they make things worse. I believe this is not the time for you to do that experiment on yourself - get yourself back on track, feel better, and then see which thing *you* believe you should try. Your chiro/nutritionist may be very knowledgeable about all kinds of things, but really - no one knows much about microscopic colitis, except us folks who have it. Eventually *you* will be the expert in what works for you, and you will use the help & advice of good folks such as you can find.
Just about always, removing things from the mix is more likely to help than adding. That's not to say that something might not be useful... just so hard to know what it is when you're miserable. Going a few weeks (or longer!) without a multi-vitamin will not harm your health. Freeda brand is very well tolerated by many here - I have not yet added a multi back to my regimen.
Hope this helps.
And I hope you're feeling better soon.
That's good news about the part-time job. Here's hoping it leads to good things, and that you'll be healing soon to face even bigger adventures...
I would not take any supplement that you are not 100% sure of. Wheat-free and gluten-free are NOT the same thing, as I recently discovered due to careless label reading (barley malt in a sublingual B-12, darnit!). While you're symptomatic, you're not absorbing these expensive supplements in an optimal manner anyway, so why take a chance?
I had to replace my B and D vitamins, eventually. But I went without any supplements at all for a while, and have been able to add back carefully. Every single thing you take adds risk - even if it does not contain gluten or soy, it may contain a mystery ingredient you haven't yet discovered you react to. I think many "colon-calming" supplements are more likely to mess us up than help. And we have a very mixed bag of experience with probiotics - some folks have found them helpful, some have found them useless, and some have found they make things worse. I believe this is not the time for you to do that experiment on yourself - get yourself back on track, feel better, and then see which thing *you* believe you should try. Your chiro/nutritionist may be very knowledgeable about all kinds of things, but really - no one knows much about microscopic colitis, except us folks who have it. Eventually *you* will be the expert in what works for you, and you will use the help & advice of good folks such as you can find.
Just about always, removing things from the mix is more likely to help than adding. That's not to say that something might not be useful... just so hard to know what it is when you're miserable. Going a few weeks (or longer!) without a multi-vitamin will not harm your health. Freeda brand is very well tolerated by many here - I have not yet added a multi back to my regimen.
Hope this helps.
And I hope you're feeling better soon.
Hi Susanne,
Quite a few of us react to soy lecithin, so that could indeed be the problem. It's difficult to pinpoint a problem with enzyme products, sometimes - one or more of the enzymes themselves might not agree with you.
The only enzyme supplement I ever took made me sick as a dog, after only one capsule, so we probably have individual tolerances on products such as that. I would be afraid to try a new supplemental drink, too, if I were already feeling "squeamish".
Congratulations on the job. I agree with you - those are probably ideal working hours for someone with MC. When I was reacting, it was always tough for me to get much done in the mornings, and I felt pretty rough, to boot, but in the afternoons, I usually felt better, and I was able to be much more productive. And, as you say, that's a great way to get your food in the door, for future opportunities. Hopefully, you'll be doing much better by then.
Tex
Quite a few of us react to soy lecithin, so that could indeed be the problem. It's difficult to pinpoint a problem with enzyme products, sometimes - one or more of the enzymes themselves might not agree with you.
The only enzyme supplement I ever took made me sick as a dog, after only one capsule, so we probably have individual tolerances on products such as that. I would be afraid to try a new supplemental drink, too, if I were already feeling "squeamish".Congratulations on the job. I agree with you - those are probably ideal working hours for someone with MC. When I was reacting, it was always tough for me to get much done in the mornings, and I felt pretty rough, to boot, but in the afternoons, I usually felt better, and I was able to be much more productive. And, as you say, that's a great way to get your food in the door, for future opportunities. Hopefully, you'll be doing much better by then.
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 Sara and Tex,
Thanks so much for your feedback. I have stopped taking the multi that the chiro/nutritionist gave me and I'm going to take a break from the multi I used to take. My multi is Costco Kirkland brand and it says that it is gluten free but what else is in there that's going to mess me up? I also take calcium supplements, CVS brand and it also says gluten free. I left a message for the Dr. that I was not going to take the supplemental drink or probiotics at this time.
After 2 phone calls to my GI Dr., I finally got instructions from him. I am to continue with 1 Entocort a day and I go back to him in the end of October.
I'm looking forward to my part-time job, hopefully everything will workout ok.
Thanks again,
Susanne
Thanks so much for your feedback. I have stopped taking the multi that the chiro/nutritionist gave me and I'm going to take a break from the multi I used to take. My multi is Costco Kirkland brand and it says that it is gluten free but what else is in there that's going to mess me up? I also take calcium supplements, CVS brand and it also says gluten free. I left a message for the Dr. that I was not going to take the supplemental drink or probiotics at this time.
After 2 phone calls to my GI Dr., I finally got instructions from him. I am to continue with 1 Entocort a day and I go back to him in the end of October.
I'm looking forward to my part-time job, hopefully everything will workout ok.
Thanks again,
Susanne
-
Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Suzie,
congrats on the job
when i wasnt tolerating supplements well, my acupuncturist and naturopath (who are also friends) suggested a gradual introduction of the supplements. I start with a 1/8th - 1/6th dose for 3 -4 days, if there are no
reactions, move up to 1/4 dose, again for 3 to 4 days, then half dose until you get to full dose.
My GP also did this with some medications i started last October, the normal dosage is 100mg per day, we started at 10mg and worked up in 10mg steps. At any stage if there were issues i was to step back a dose and wait 5 days before progressing. This worked really well
Our systems can be super sensitive, so the introduction of something new could cause a reaction (like toddlers when you are starting them on solid foods)
until you know if you are reactive to things like soy, i would avoid supplements with more than 5- 8 ingredients. if you are reacting it is hard to pinpoint what ingredient is causing you issues
congrats on the job
when i wasnt tolerating supplements well, my acupuncturist and naturopath (who are also friends) suggested a gradual introduction of the supplements. I start with a 1/8th - 1/6th dose for 3 -4 days, if there are no
reactions, move up to 1/4 dose, again for 3 to 4 days, then half dose until you get to full dose.
My GP also did this with some medications i started last October, the normal dosage is 100mg per day, we started at 10mg and worked up in 10mg steps. At any stage if there were issues i was to step back a dose and wait 5 days before progressing. This worked really well
Our systems can be super sensitive, so the introduction of something new could cause a reaction (like toddlers when you are starting them on solid foods)
until you know if you are reactive to things like soy, i would avoid supplements with more than 5- 8 ingredients. if you are reacting it is hard to pinpoint what ingredient is causing you issues
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama