Help! Hard Stool not Resolving
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MamaBeabs
Help! Hard Stool not Resolving
This has been going on the entire 17 days I have taken Budesonide and prior to that because I was taking an anti-diarrheal (prescription). I have tried adding back in fruits and vegetables. Can I take magnesium or something? I need advice. This constipation cannot be good for healing inflammation.
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MamaBeabs
Reduce Bedesonide Dose?
I would need to consult my doctor. I have sent a message to him. I noticed in my calendar it has been 9 days since I had the Hyoscyamine and since I took the advice of adding fruits and veggies back in my diet. It has not helped one bit. Is this constipation impeding my healing?
Unless you stop the cause of the constipation (too much budesonide), the constipation's going to continue.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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MamaBeabs
Reducing Budesonide Dose?
I hope the GI doctor will respond tomorrow. My system is so touchy I do not tolerate any medications well. Allergic to so many also. I guess I will learn how this doctor will address this obvious cause. Trying not to get stressed or dread what I anticipate will be a non-response- such as "I will discuss this at the November 8th appointment" which he keeps saying. By then another week of constipation will have occurred.
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Why do you need your doctor's permission to decrease or eliminate the medication? One thing that has helped me regain my health is knowing that I can do the research and I can determine what is best for me in many circumstances, especially when I know that the doctor is not well informed on a particular issue like MC. Maybe this seems radical to you but it has been the key to my getting healthy.
Another way to think about this is that budesonide does not heal you. It merely treats the symptom of diarrhea. Since the symptom, D, is gone the medication to treat it is no longer necessary.
Jean
Another way to think about this is that budesonide does not heal you. It merely treats the symptom of diarrhea. Since the symptom, D, is gone the medication to treat it is no longer necessary.
Jean
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MamaBeabs
Suppotive Research to reduce Budesone dose
Jut wondering if there is a resource I can refer to or research I can do or that someone else has done to support reducing the Budesonide so I can speak with a bit more authority to the doctor. Right now I have no proof that the best course of action is to reduce the dose to stop the consitpation/
Ms. Beabs,
Here is the label https://www.accessdata.fda.gov/drugsatf ... 008lbl.pdf
You may want to pop in and talk to your pharmacist. He/she should tell you to step down to a smaller dose.
The problem with our disease is that there is not a lot of info out there. I doubt your doctor will know much more
than the folks on the board and possibly less. Sadly we've had a number of members suffer severe constipation
while they were on Entocort as their doctor's were clueless. Some doctors will advise their patients to step down.
If you note the label Entocort is actually for Crohns disease. We don't have any drugs specifically for our disease.
This is one reason we promote our Microscopic Colitis Foundation as a resource for our disease as we are an
orphan disease for which there is not a lot of research/information out there.
I got constipation after about 9 days after starting budesonide and stepped down to 2 pills at the direction of
the board. (My gastro doc was a joke--said diet did not matter- said it did not matter that my mother had
celiac disease.)
Here is the label https://www.accessdata.fda.gov/drugsatf ... 008lbl.pdf
You may want to pop in and talk to your pharmacist. He/she should tell you to step down to a smaller dose.
The problem with our disease is that there is not a lot of info out there. I doubt your doctor will know much more
than the folks on the board and possibly less. Sadly we've had a number of members suffer severe constipation
while they were on Entocort as their doctor's were clueless. Some doctors will advise their patients to step down.
If you note the label Entocort is actually for Crohns disease. We don't have any drugs specifically for our disease.
This is one reason we promote our Microscopic Colitis Foundation as a resource for our disease as we are an
orphan disease for which there is not a lot of research/information out there.
I got constipation after about 9 days after starting budesonide and stepped down to 2 pills at the direction of
the board. (My gastro doc was a joke--said diet did not matter- said it did not matter that my mother had
celiac disease.)
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MamaBeabs
I cannot write prescriptions
That is the reason, as a first time MCer newly diagnosed, if I lose my prescribing doctor, then what? Shouldn't I at least explain that I want to reduce the budesonide before going rogue without a prescribing doctor? So who prescribes your medication or who did?
My original GI did the scrip. My step down actually ended up being a good thing because then I had extra pills that I could use
at the end of the taper as recommended by the board. My original GI told me 30 days at 3 pills, 30 days at 2 pills and 30 days at one pill.
He got this info from Astra Zeneca the drug manufacturer.
Lucky for me I did not stay on the 30 days at 3 as I would have had severe constipation early on and the other thing
is the forum and also numerous studies on Pub Med show that being on Entocort for only 90 days means a
very high risk of relapse for MCers, I think it is something like 65% particularly for those that are not GF.
THese studies are readily on line.
So.....when I got constipation I stepped down to 2 pills. For me this was at about 9 days. Because I was not
on the high dose for long it meant I had extra pills at the end.
My original scrip was for the Astra Zeneca 90 day thing. I stayed on Entocort for 4.5 months (I guess you could
say I went rogue by listening to the forum) . At the low end I was on a pill every 4th day. Then I stopped. When I stopped I still
had about 15 pills left in the bottle from the original scrip.
I was GF and DF when I got of Entocort and have not looked back. If you look at my sign on date I was only
on Entocort once and that was the end of 2010 and beginning of 2011.
This is a rough, rough disease early on and I could tell the folks on the board knew what they were talking
about.
If I had listened only to the GI doc I would have most likely had an immediate relapse (within 2 weeks)
after stopping the last pill because I would not have been GF and I would have only been on the drug 3 months.
Instead except for a 30 day stint on cholestyramine several years later I have been drug free, doing well,
and maintaining through diet.
Once you get in remission this is not a condition that needs doctor followup. I've only had 4 GI visits in
my life. GI #1: original consult. Second visit he told me diagnosis and gave me scrip for Entocort.
GI#2: Second opinion consult (I really did not need it but forced by my coworkers). Second visit
to GI#2 they laughingly said I had healed myself since I was already GF and I was off of Entocort.
I have to go back in 3 years for another routine colonoscopy unrelated to MC.
My scrip for cholestyramine I got thru PCP several years later.
If it makes you feel better just call the doctor's office, ask for the charge nurse, and tell her you are getting
extremely constipated so you are dropping down to 2 pills. This way you are keeping them informed.
at the end of the taper as recommended by the board. My original GI told me 30 days at 3 pills, 30 days at 2 pills and 30 days at one pill.
He got this info from Astra Zeneca the drug manufacturer.
Lucky for me I did not stay on the 30 days at 3 as I would have had severe constipation early on and the other thing
is the forum and also numerous studies on Pub Med show that being on Entocort for only 90 days means a
very high risk of relapse for MCers, I think it is something like 65% particularly for those that are not GF.
THese studies are readily on line.
So.....when I got constipation I stepped down to 2 pills. For me this was at about 9 days. Because I was not
on the high dose for long it meant I had extra pills at the end.
My original scrip was for the Astra Zeneca 90 day thing. I stayed on Entocort for 4.5 months (I guess you could
say I went rogue by listening to the forum) . At the low end I was on a pill every 4th day. Then I stopped. When I stopped I still
had about 15 pills left in the bottle from the original scrip.
I was GF and DF when I got of Entocort and have not looked back. If you look at my sign on date I was only
on Entocort once and that was the end of 2010 and beginning of 2011.
This is a rough, rough disease early on and I could tell the folks on the board knew what they were talking
about.
If I had listened only to the GI doc I would have most likely had an immediate relapse (within 2 weeks)
after stopping the last pill because I would not have been GF and I would have only been on the drug 3 months.
Instead except for a 30 day stint on cholestyramine several years later I have been drug free, doing well,
and maintaining through diet.
Once you get in remission this is not a condition that needs doctor followup. I've only had 4 GI visits in
my life. GI #1: original consult. Second visit he told me diagnosis and gave me scrip for Entocort.
GI#2: Second opinion consult (I really did not need it but forced by my coworkers). Second visit
to GI#2 they laughingly said I had healed myself since I was already GF and I was off of Entocort.
I have to go back in 3 years for another routine colonoscopy unrelated to MC.
My scrip for cholestyramine I got thru PCP several years later.
If it makes you feel better just call the doctor's office, ask for the charge nurse, and tell her you are getting
extremely constipated so you are dropping down to 2 pills. This way you are keeping them informed.
MamaBeabs,
You seem to be missing the main point here: GI docs in general do not understand how to properly treat this disease.
If you need a script for budesonide later, you can probably get it from your GP, since it's already listed on your record — that's what many members here do to save a lot of time and trouble (or they order it from an offshore pharmacy where no prescription is necessary — for pennies on the dollar).
If you really feel obligated to your GI specialist, this advice by Brandy is excellent (though most of us would consider it unnecessary):
Tex
You seem to be missing the main point here: GI docs in general do not understand how to properly treat this disease.
If you need a script for budesonide later, you can probably get it from your GP, since it's already listed on your record — that's what many members here do to save a lot of time and trouble (or they order it from an offshore pharmacy where no prescription is necessary — for pennies on the dollar).
If you really feel obligated to your GI specialist, this advice by Brandy is excellent (though most of us would consider it unnecessary):
Not to be insensitive, but the reality is — the alternative is to continue on your present dose of budesonide and continue to complain about constipation. I believe I'm safe in saying that few of us here would be hard-headed enough to punish ourselves that way.If it makes you feel better just call the doctor's office, ask for the charge nurse, and tell her you are getting
extremely constipated so you are dropping down to 2 pills. This way you are keeping them informed.
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.
MamaBeabs,
Sorry for your distress. I'm not sure I have a handle on your history of symptons and medications, but I believe you've said that you have a history of IBS with alternating D and C, but that you also now also have biopsy diagnosed MC. Is that right?
In any event, you're on budesonide, which is canonically prescribed to stop the diarrhea of MC. If you've literally been constipated for the entire 17 days or whatever that you've been on budesonide, then it seems logical, as others have said, that you should consider dropping the budesonide dose. I've been on budesonide now for 16 weeks and sometimes fluctuate into two or three days of mild constipation but it always fluctuates back to normal or even toward some looseness. But if I had constipation for 17 days, I'd reduce my dose if things like hydration didn't work.
Of course, I'd contact the nurse at my GI doctor's office to get her opinion, or the doctor's opinion communicated through her. I can also email doctors through a so-called patient portal. Do you not have these means of communicating with your doctor?
Sure, there are probably drugs for life threatening conditions that shouldn't be altered without a doctor's supervision. While I'm not a doctor, I don't understand MC to be life threatening if one simply reduces the dose of a medication because of side effects. After all, many MC'ers (at least according to this forum) don't take meds at all for the condition.
Sorry for your distress. I'm not sure I have a handle on your history of symptons and medications, but I believe you've said that you have a history of IBS with alternating D and C, but that you also now also have biopsy diagnosed MC. Is that right?
In any event, you're on budesonide, which is canonically prescribed to stop the diarrhea of MC. If you've literally been constipated for the entire 17 days or whatever that you've been on budesonide, then it seems logical, as others have said, that you should consider dropping the budesonide dose. I've been on budesonide now for 16 weeks and sometimes fluctuate into two or three days of mild constipation but it always fluctuates back to normal or even toward some looseness. But if I had constipation for 17 days, I'd reduce my dose if things like hydration didn't work.
Of course, I'd contact the nurse at my GI doctor's office to get her opinion, or the doctor's opinion communicated through her. I can also email doctors through a so-called patient portal. Do you not have these means of communicating with your doctor?
Sure, there are probably drugs for life threatening conditions that shouldn't be altered without a doctor's supervision. While I'm not a doctor, I don't understand MC to be life threatening if one simply reduces the dose of a medication because of side effects. After all, many MC'ers (at least according to this forum) don't take meds at all for the condition.
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MamaBeabs
GI Doctor Response
First let me explain that very late last night I could no longer deal with the constipation. I went to the pharmacy and my pharmacist advised a one time dose of Colace. He know me well enough to know if I would only need one dose. I took it and was very much relieved in the morning. In the meantime, early a.m., I sent a couple of messages to my GI Doctor (he will officially be that when we first meet November 8th). I expressed that I could not wait that long for a determination. He recommended decreasing from 9mg Budesonide to 6mg. My GI specialist chimed in that she wanted me to take 17G of Miralax daily. I had already done this during my 8 months of alternating C and D and it actually worked for a long time. Until it didn't. I can't say that I really know what this stuff is. Until coming to this forum I see my past self as just doing as was recommended and never asking questions. I am good at pointing out when something isn't working. So I am glad the GI doctor listened. My body is ultra sensitive to medicines, supplements, and many foods. This morning I met with my GI nutritionist in person to let her know that I was not going to come off my GF, Low Residue diet as the GI specialist recommended. I would eat some fruits, and find GF products that contained fiber. I have a registered dietitian at our grocery store who helped me find just what I needed. She's a great resource! Thankfully my GI nutritionist agrees that I do not need to change my diet per the specialist who was insisting on whole wheat, among other things I was not inclined to ingest. It was a great meeting and I felt she has my back. Now my question is about the Miralax. I really never had any problems with it in the past, and it did help with the C, and when I swung to D I modified my diet which was enough until MC took over my life. Still, I know little about it and how it relates to MC. It is a well known fact in this Digestive Health Center (the only game in town) that I value myself as human person, a patient, and a consumer, no less or more important than any other human person being treated at this facility. I am finally getting immediate responses. Thank you for all your support and responses.