Has anyone had severe constipation -impacted lower bowel- after taking budesonide? I am taking 3 mgm. daily. I started with 9 mgms. daily in March 2011 and have been taking 3 mgms. daily for about three years.
I stopped taking the budesonide as of today.
Every time I try to stop taking the medication the diarrhea comes back. I have tried gradually reducing it to one every other day before and I get a relapse. I am not sure what will happen this time but I know I cannot risk another impaction.
I have also lost a lot of weight from 125 lbs. to 90 lbs.
severe constipation
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Hi,
Constipation is a side effect of budesonide, especially if the dose is too high or it is no longer needed. I'm not aware of anyone else here who has ended up with impaction because of budesonide, because our standing advice is to lower the dose whenever constipation begins.
Something in your diet is preventing you from being able to wean off the budesonide. It could even be high-histamine foods. Have you tried taking an antihistamine each day when you are trying to wean off the budesonide?
Tex
Constipation is a side effect of budesonide, especially if the dose is too high or it is no longer needed. I'm not aware of anyone else here who has ended up with impaction because of budesonide, because our standing advice is to lower the dose whenever constipation begins.
Something in your diet is preventing you from being able to wean off the budesonide. It could even be high-histamine foods. Have you tried taking an antihistamine each day when you are trying to wean off the budesonide?
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.
So I have been off the budesonide for 11 days now. No diarrhea so far. I think I have had some withdrawal symptoms. It would be a miracle if I don't relapse. I have had lymphocytic colitis for five years and have been treated for 3.5 years. Has anyone else had the same experience and succeeded in getting off medication?
I thought I should give an update. I stayed off the budesonide for two weeks. Then I had a lot of gas and discomfort and the diarrhea was coming back.
So I started taking the budesonide again. That lasted for five days and then the constipation returned so I stopped the budesonide again. Off it now for three days.
Is this the end stage of MC? Anyone else had this experience?
So I started taking the budesonide again. That lasted for five days and then the constipation returned so I stopped the budesonide again. Off it now for three days.
Is this the end stage of MC? Anyone else had this experience?
Most of us here taper the dose, and wean off it very slowly, especially after the dose is reduced to 3 mg per day and less. Stopping abruptly, or not tapering the dose slowly enough typically results in a relapse of symptoms due to a rebound effect apparently caused by mast cell re-population.
Tex
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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Gabes-Apg
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What quite a few have done is taken a tablet every second or third day.
get enough of the med that D does not happen, not take too much to cause C.
The other option is to get empty capsules from compounder type chemist and halve the dose.
Not sure you would class this as the 'end of MC', Constipation is still an indication of inflammation.
get enough of the med that D does not happen, not take too much to cause C.
The other option is to get empty capsules from compounder type chemist and halve the dose.
Not sure you would class this as the 'end of MC', Constipation is still an indication of inflammation.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks for the advice. Much appreciated.
I am still tweaking it. I stayed off the budesonide for three days this time and went back on it this morning after the slightest bit of diarrhea.
I don't want to take it if I get any constipation so I will watch for that.
I don't think I can do the every other day thing because of the constipation. It may end up being off three days and on one day. I will go by what is happening.
I never had constipation before, just diarrhea. I am thinking the constipation is a side effect of budesonide and hoping it is a sign that the MC might be getting better.
I am still tweaking it. I stayed off the budesonide for three days this time and went back on it this morning after the slightest bit of diarrhea.
I don't want to take it if I get any constipation so I will watch for that.
I don't think I can do the every other day thing because of the constipation. It may end up being off three days and on one day. I will go by what is happening.
I never had constipation before, just diarrhea. I am thinking the constipation is a side effect of budesonide and hoping it is a sign that the MC might be getting better.
You are quite correct, but the relapses mean that either you are still eating something that is causing you to react, or you are not tapering the dose of Entocort properly and that is causing a rebound effect that results in a relapse of symptoms.aquilegia wrote:I am thinking the constipation is a side effect of budesonide and hoping it is a sign that the MC might be getting better.
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 AQ,
Sorry you are suffering. I was an Entocort user. (4.5 months.) My experience with Entocort was that when I got constipated it was time to step down the dose.
Are you currently GF and DF? I was already GF when i got off of Entocort at the direction of the board. I went DF about 2 weeks before my last Entocort as an insurance policy as that is what everyone said to do. It will most likely take being GF and DF and a slow taper to get completely off of Entocort. I believe one member took half doses during her taper down. She opened the capsule and poured out half. I didn't do this.
Mostly at around the 14 day point after last pill we seem to be at risk of relapse up to 60 days but the 14 day point seems to be when most relapses occur.
To minimize relapse after last pill be GF, DF (before getting off of Entocort) eat very safe diet in the 60 days after last pill. i.e. nothing processed, stick with protein, overcooked veggies, rice, potato or sweet potato.
Consider taking antihistamine regimin and start 3 days before last pill. Claritin redi tab in morning and/or benadryl in evening. THis will minimize mast cell activity that the Entocort was suppressing. Stay on this antihistimine regimine for 60 days to minimize relapse. I didn't do this as it wasn't discussed until after I was off of Entocort but I definitely noticed a significant increase of mast cell activity after my last Entocort (the runny nose thing.) Taking the antihistamine combined with being GF and DF will help prevent relapse.
If you havn't done the Enterolab testing consider doing it at 60 day point after last Entocort. That will help you stay permanently in remission and drug free.
Also are you taking any other prescription drugs. Some prescription drugs will prevent us from going into remission. Tex is better with this info.
Brandy
Sorry you are suffering. I was an Entocort user. (4.5 months.) My experience with Entocort was that when I got constipated it was time to step down the dose.
Are you currently GF and DF? I was already GF when i got off of Entocort at the direction of the board. I went DF about 2 weeks before my last Entocort as an insurance policy as that is what everyone said to do. It will most likely take being GF and DF and a slow taper to get completely off of Entocort. I believe one member took half doses during her taper down. She opened the capsule and poured out half. I didn't do this.
Mostly at around the 14 day point after last pill we seem to be at risk of relapse up to 60 days but the 14 day point seems to be when most relapses occur.
To minimize relapse after last pill be GF, DF (before getting off of Entocort) eat very safe diet in the 60 days after last pill. i.e. nothing processed, stick with protein, overcooked veggies, rice, potato or sweet potato.
Consider taking antihistamine regimin and start 3 days before last pill. Claritin redi tab in morning and/or benadryl in evening. THis will minimize mast cell activity that the Entocort was suppressing. Stay on this antihistimine regimine for 60 days to minimize relapse. I didn't do this as it wasn't discussed until after I was off of Entocort but I definitely noticed a significant increase of mast cell activity after my last Entocort (the runny nose thing.) Taking the antihistamine combined with being GF and DF will help prevent relapse.
If you havn't done the Enterolab testing consider doing it at 60 day point after last Entocort. That will help you stay permanently in remission and drug free.
Also are you taking any other prescription drugs. Some prescription drugs will prevent us from going into remission. Tex is better with this info.
Brandy
Thanks for all the great suggestions.
As far as diet is concerned, I went gluten free for six months and that did not help. I am already dairy free except for aged cheddar which is supposed to be OK. I have learned (the hard way or maybe the opposite way, depending on how you look at it) that I cannot eat raw vegetables. I peel everything and I like sweet potatoes. I do not eat processed foods or desserts and I eat low fibre and low fat.
My new regimen is going to be trying the every other day thing and see how that goes. I'm not sure how I will know when I can do every third day.
I look at this as a sign that my MC is getting better. When side effects appear it can mean that the condition being treated is improving.
I am researching mast cells. I always thought they were protective, not harmful.
As far as diet is concerned, I went gluten free for six months and that did not help. I am already dairy free except for aged cheddar which is supposed to be OK. I have learned (the hard way or maybe the opposite way, depending on how you look at it) that I cannot eat raw vegetables. I peel everything and I like sweet potatoes. I do not eat processed foods or desserts and I eat low fibre and low fat.
My new regimen is going to be trying the every other day thing and see how that goes. I'm not sure how I will know when I can do every third day.
I look at this as a sign that my MC is getting better. When side effects appear it can mean that the condition being treated is improving.
I am researching mast cells. I always thought they were protective, not harmful.
Here is some basic information about mast cells, and how mast cell issues are associated with microscopic colitis:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
Tex
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
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.
That stuff about mast cells and histamine is very interesting. I have never heard about that before.
Interestingly I sneeze every morning. I thought I was allergic to something in the newspaper. Last night I started to get an itchy rash. I had not eaten anything different.
I think I will take a Claritin and see what happens. It sounds like it might help and it probably won't do any harm.
Now I have to read about foods that are high in histamine.
Interestingly I sneeze every morning. I thought I was allergic to something in the newspaper. Last night I started to get an itchy rash. I had not eaten anything different.
I think I will take a Claritin and see what happens. It sounds like it might help and it probably won't do any harm.
Now I have to read about foods that are high in histamine.
I took Claritin for three days and I got impacted again. I found out that it can cause extreme constipation!!! I am really disappointed because I thought I had found a great treatment for LC, but it turned out to be a hellish experience.
I want to warn people here that this is a possibility and to be careful if you do take antihistamines.
Now I am not sure what I am going to do. I don't think I can go off the budesonide gradually so it will be "cold turkey" again or maybe take one pill every three or four days.
Just wanted to add that I took both the Claritin and the budesonide for one day only and that I was taking the Claritin alone for the second and third day.
I want to warn people here that this is a possibility and to be careful if you do take antihistamines.
Now I am not sure what I am going to do. I don't think I can go off the budesonide gradually so it will be "cold turkey" again or maybe take one pill every three or four days.
Just wanted to add that I took both the Claritin and the budesonide for one day only and that I was taking the Claritin alone for the second and third day.
Hi,
I'm sorry to hear that you're having so many problems regulating your doses of medications. Yes, antihistamines can cause constipation, but they typically don't cause impaction. That problem is probably due to the Entocort, and the fact that you are very sensitive to it.
The reason why you continue to relapse every time that you reduce the dose of Entocort to less than 3 mg per day is almost surely because you are eating one or more foods that are causing you to react. You need to figure out what the food (or foods) is/are, and remove it/them from your diet. That will solve your problems. As long as you continue to eat a food that is perpetuating the inflammation, you are going to be unable to wean off the Entocort without relapsing. Entocort is not a cure, it only masks the symptoms of MC. Proper diet changes to stop the symptoms are as close to a cure as we can get, with MC.
Tex
I'm sorry to hear that you're having so many problems regulating your doses of medications. Yes, antihistamines can cause constipation, but they typically don't cause impaction. That problem is probably due to the Entocort, and the fact that you are very sensitive to it.
The reason why you continue to relapse every time that you reduce the dose of Entocort to less than 3 mg per day is almost surely because you are eating one or more foods that are causing you to react. You need to figure out what the food (or foods) is/are, and remove it/them from your diet. That will solve your problems. As long as you continue to eat a food that is perpetuating the inflammation, you are going to be unable to wean off the Entocort without relapsing. Entocort is not a cure, it only masks the symptoms of MC. Proper diet changes to stop the symptoms are as close to a cure as we can get, with MC.
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.
So I am ready to give a progress report although I am afraid I will be jinxed by doing so.
After the problems with the Claritin I did not take any medication for about three days. Then I decided to try taking budesonide every other day. I have been doing that for almost two weeks now and it seems to be going quite well except for the occasional gut emptier. Anyway that beats an impaction any day!!!
When I tried taking it every other day before, I got too impatient and jumped the gun and stopped the budesonide at the first sign of progress. This time I am going to wait longer before changing anything although I am not sure when to decrease it to every three days. Perhaps at the first sign of constipation?
Right now I am happy with my limited improvement and am hoping for more. Perhaps we do not have to endure this disease for a lifetime after all.
After the problems with the Claritin I did not take any medication for about three days. Then I decided to try taking budesonide every other day. I have been doing that for almost two weeks now and it seems to be going quite well except for the occasional gut emptier. Anyway that beats an impaction any day!!!
When I tried taking it every other day before, I got too impatient and jumped the gun and stopped the budesonide at the first sign of progress. This time I am going to wait longer before changing anything although I am not sure when to decrease it to every three days. Perhaps at the first sign of constipation?
Right now I am happy with my limited improvement and am hoping for more. Perhaps we do not have to endure this disease for a lifetime after all.