glad to hear that there is improvements
happy healing
Budesonide Quick Question
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Pebbledash
- Gentoo Penguin
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Update April 2019:
Unfortunately, I am not in a good way. I've tapered Budesonide over a 7 month period down to one cap per day. It never really worked the way it had the first time I used it, never a genuine return to "normality." My bathroom visits are down, to be fair, but I am far from normal--watery diarrhea is always just a bathroom visit away. Unpredictable, non-solid bathroom visits. I don't think Imodium works for me any more, and I am always topping up with Pepto Bismol.
I recently developed oral thrush, though this may have been a result of wearing a nightly mouthguard more than the Budesonide; I also seem to have higher than normal ocular pressure (that can lead to glaucoma) so I have arranged a visit to the eye hospital--again, it is unclear whether Budesonide is implicated, but still, one worries. I am on one per day.
I also have peripheral neuropathy, which seems to be worsening/aggravated.
All in all, I am fed up with being sick, never believed this would happen to me, not in a million years. But the truth is that my quality of life already is severely compromised.
I am arranging a consultation with my gastro to try other options. I worry that the high inflammation in my gut has been there too long to heal and is causing other problems.
Any advice would be welcome--any ideas about alternative treatments etc.
Thanks
Paul
Unfortunately, I am not in a good way. I've tapered Budesonide over a 7 month period down to one cap per day. It never really worked the way it had the first time I used it, never a genuine return to "normality." My bathroom visits are down, to be fair, but I am far from normal--watery diarrhea is always just a bathroom visit away. Unpredictable, non-solid bathroom visits. I don't think Imodium works for me any more, and I am always topping up with Pepto Bismol.
I recently developed oral thrush, though this may have been a result of wearing a nightly mouthguard more than the Budesonide; I also seem to have higher than normal ocular pressure (that can lead to glaucoma) so I have arranged a visit to the eye hospital--again, it is unclear whether Budesonide is implicated, but still, one worries. I am on one per day.
I also have peripheral neuropathy, which seems to be worsening/aggravated.
All in all, I am fed up with being sick, never believed this would happen to me, not in a million years. But the truth is that my quality of life already is severely compromised.
I am arranging a consultation with my gastro to try other options. I worry that the high inflammation in my gut has been there too long to heal and is causing other problems.
Any advice would be welcome--any ideas about alternative treatments etc.
Thanks
Paul
Hi Paul,
I’m sorry to hear that things are not going smoothly yet for you. I have a couple of random thoughts:
Others here have taken a bile acid sequestrant (such as cholestyramine) and found them to be helpful in managing persistent D. Side effects for these seem to be minimal. It may be worth a look.
My other random thought is that ‘it’s April’- the month where everyone in the education looks at their list of things that must be accomplished before May and feels this:
. Combine that with spring allergies or any other life event and it’s sure to create a new storm of aggravation that will keep our symptoms churning.
This may not be the best time of year to gauge your overall progress. Leave room to have some compassion toward yourself, especially if your immune system is struggling. If you can squeeze in some time for meditation or gentle exercise to help manage the stress, it would be beneficial I’m sure.
These are the only (pre-coffee) thoughts I have this morning, but I’m sure others will chime in with better ideas than mine.
Best wishes,
Carol
I’m sorry to hear that things are not going smoothly yet for you. I have a couple of random thoughts:
Others here have taken a bile acid sequestrant (such as cholestyramine) and found them to be helpful in managing persistent D. Side effects for these seem to be minimal. It may be worth a look.
My other random thought is that ‘it’s April’- the month where everyone in the education looks at their list of things that must be accomplished before May and feels this:
. Combine that with spring allergies or any other life event and it’s sure to create a new storm of aggravation that will keep our symptoms churning. This may not be the best time of year to gauge your overall progress. Leave room to have some compassion toward yourself, especially if your immune system is struggling. If you can squeeze in some time for meditation or gentle exercise to help manage the stress, it would be beneficial I’m sure.
These are the only (pre-coffee) thoughts I have this morning, but I’m sure others will chime in with better ideas than mine.
Best wishes,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Good morning Paul,
Yesterday, I read this entire thread, and am so sorry to hear about your struggles. I know how heart wrenchingly awful this disease can be. Don't know how many times I've felt "crushed" over the years.
The reason I'm chiming in is not because I have a "magic" solution for you, but your statement (which you've made a couple of times) that you think you may have had inflammation too long to be healed is probably something you should remove from your "worry list". Don't ever give up - you CAN get your life back!!! It has taken me about 20 years to feel pretty secure that I'm there. Here is what I'm doing now:
No gluten, no dairy, no soy, no grains, no white potatoes, no cold cuts, no alcohol, minimal coffee, low histamine. Rice is supposed to be safe for everyone, but guess what, it's not safe for me!!! With all of this in place, + many other things, like small meals, meditation, yoga, spending time in nature, etc. I finally seem to be in good shape and am willing to do anything to keep it this way.
So for me, diet has been the key to recovery. At one of my low points, I ordered Budesonide from All Day Chemist, but so far I haven't had to use them. It's nice to know that I have them as a back up, as you can never feel 100% safe with this condition.
I wish you all the best as you continue on your journey towards "radiant health". I'm convinced that you will find your solution, as we all seem to have a different combinations of things that bring us to a good place.
Love,
Kari
Yesterday, I read this entire thread, and am so sorry to hear about your struggles. I know how heart wrenchingly awful this disease can be. Don't know how many times I've felt "crushed" over the years.
The reason I'm chiming in is not because I have a "magic" solution for you, but your statement (which you've made a couple of times) that you think you may have had inflammation too long to be healed is probably something you should remove from your "worry list". Don't ever give up - you CAN get your life back!!! It has taken me about 20 years to feel pretty secure that I'm there. Here is what I'm doing now:
No gluten, no dairy, no soy, no grains, no white potatoes, no cold cuts, no alcohol, minimal coffee, low histamine. Rice is supposed to be safe for everyone, but guess what, it's not safe for me!!! With all of this in place, + many other things, like small meals, meditation, yoga, spending time in nature, etc. I finally seem to be in good shape and am willing to do anything to keep it this way.
So for me, diet has been the key to recovery. At one of my low points, I ordered Budesonide from All Day Chemist, but so far I haven't had to use them. It's nice to know that I have them as a back up, as you can never feel 100% safe with this condition.
I wish you all the best as you continue on your journey towards "radiant health". I'm convinced that you will find your solution, as we all seem to have a different combinations of things that bring us to a good place.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Paul,
Carol's suggestion about a bile acid sequestrant is worth noting. It has definitely helped me. It binds to bile in the intestines, is not absorbed and can, for many, lessen D. I had my gall bladder out years ago and thus bile became an issue. HOWEVER, there are many folks who benefit from cholestyramine who still have their gall bladders.
It was posted here not long ago that the Mayo Clinic is doing a study of a bile acid sequestrant and MC.
The only difficult part is taking it in accordance with your other meds as it can interfere with some. Presently, I take it before bedtime, once a day, which makes it easier to take other vitamins and minerals throughout the day.
I wish you the best,
Susan
Carol's suggestion about a bile acid sequestrant is worth noting. It has definitely helped me. It binds to bile in the intestines, is not absorbed and can, for many, lessen D. I had my gall bladder out years ago and thus bile became an issue. HOWEVER, there are many folks who benefit from cholestyramine who still have their gall bladders.
It was posted here not long ago that the Mayo Clinic is doing a study of a bile acid sequestrant and MC.
The only difficult part is taking it in accordance with your other meds as it can interfere with some. Presently, I take it before bedtime, once a day, which makes it easier to take other vitamins and minerals throughout the day.
I wish you the best,
Susan
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Pebbledash
- Gentoo Penguin
- Posts: 260
- Joined: Sun Aug 11, 2013 1:37 pm
Thanks for your input, everyone. This is the most incredible forum.
I really don't want to be a moaner. It's hard for me to accept that I don't have the health I used to have.
I'll retry cholestyramine.
I do think that environment has a role here, albeit at a very submerged, hard-to-quantify level. Weirdly, it is still true that when I travel to Vegas (not a place that I am in love with at all) my gut seems to magically heal. Something (not) in the air? :)
I also think I miss nature a lot and its natural restorative qualities.
It's hard dealing with this, and with Peripheral Neuropathy at the same time. Too many meds. I wonder if the Gabapentin I take for neuropathy also triggers D.
I'm seriously now considering a steroid-sparing regime and have communicated with my gastro. The choice of medications is, however, rather bewildering--Humira, Entyvio, Imuran, infliximab/inflectra, to name the ones I have come across. A number seem to be correlated with either Neuropathy or Multiple Sclerosis, which concerns me. Imuran seems to be the best choice for me in this light, the one with the least side-effects. If anyone has tried any of these, or knows about their relative qualities, I would be interested.
Thanks to you all.
Paul
I really don't want to be a moaner. It's hard for me to accept that I don't have the health I used to have.
I'll retry cholestyramine.
I do think that environment has a role here, albeit at a very submerged, hard-to-quantify level. Weirdly, it is still true that when I travel to Vegas (not a place that I am in love with at all) my gut seems to magically heal. Something (not) in the air? :)
I also think I miss nature a lot and its natural restorative qualities.
It's hard dealing with this, and with Peripheral Neuropathy at the same time. Too many meds. I wonder if the Gabapentin I take for neuropathy also triggers D.
I'm seriously now considering a steroid-sparing regime and have communicated with my gastro. The choice of medications is, however, rather bewildering--Humira, Entyvio, Imuran, infliximab/inflectra, to name the ones I have come across. A number seem to be correlated with either Neuropathy or Multiple Sclerosis, which concerns me. Imuran seems to be the best choice for me in this light, the one with the least side-effects. If anyone has tried any of these, or knows about their relative qualities, I would be interested.
Thanks to you all.
Paul
Paul,
I responded to your other post with some of my experiences regarding medications. I did want to address the thrush. I also got oral thrush after long-term Budesonide use (I was on and off Budesonide for 9 months).
You can get a RX for mouthwash (Nystatin) that helps. Your GI or primary care should be able to call in the script. Other things that help: switching out your toothbrush every few days (thrush can hang around!), drinking lemon water (an acidic environment in the mouth is better), "oil pulling" with coconut oil (essentially rinse and spit with coconut oil).
Good luck!
I responded to your other post with some of my experiences regarding medications. I did want to address the thrush. I also got oral thrush after long-term Budesonide use (I was on and off Budesonide for 9 months).
You can get a RX for mouthwash (Nystatin) that helps. Your GI or primary care should be able to call in the script. Other things that help: switching out your toothbrush every few days (thrush can hang around!), drinking lemon water (an acidic environment in the mouth is better), "oil pulling" with coconut oil (essentially rinse and spit with coconut oil).
Good luck!
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Pebbledash
- Gentoo Penguin
- Posts: 260
- Joined: Sun Aug 11, 2013 1:37 pm
Hi LisaLisa_D wrote:Paul,
I responded to your other post with some of my experiences regarding medications. I did want to address the thrush. I also got oral thrush after long-term Budesonide use (I was on and off Budesonide for 9 months).
You can get a RX for mouthwash (Nystatin) that helps. Your GI or primary care should be able to call in the script. Other things that help: switching out your toothbrush every few days (thrush can hang around!), drinking lemon water (an acidic environment in the mouth is better), "oil pulling" with coconut oil (essentially rinse and spit with coconut oil).
Good luck!
Thanks for chiming in re. the oral thrush. Interestingly, my doc prescribed me Nystatin, but, before it arrived in the mail, I gargled with salt water as well as apple cider vinegar for a week. And you know what, the thrush seems to have gone!
I also threw out a disgusting mouth guard I had been using for 6 months to prevent nightly tooth grinding (bruxism). Good point about changing tooth brushes too.
Cheers
Paul
Paul,
Look into rxsilver.com I have been taking the maintenance dose every day since April 2018 and it has hundreds of virus/fungus/bacteria/mold removing possibilities. I am having the best dentist visits I have ever had in my life (2 ) but I have been told my gums are extraordinary and to keep up the home hygiene.....which isn't a whole lot except instead of using a medicinal mouthwash I use Nano Silver and I hold it in my mouth and swish it around for 4-5 minutes and then I swallow it, so it can keep on working and removing other yucky things as it travels through my gut.
I bet it would cure thrush quite quickly and take care of other intestinal business as well. It has been a game changer in our household. I can share the pdf web link that explains in depth the usage and how to take it for certain things like bronchitis, ear aches, skin issues etc.....many uses.
https://silveruseinstitute.com/
You can get a free Ecopy or purchase the book.
Here's to more healing and happier mental outlook days
Look into rxsilver.com I have been taking the maintenance dose every day since April 2018 and it has hundreds of virus/fungus/bacteria/mold removing possibilities. I am having the best dentist visits I have ever had in my life (2 ) but I have been told my gums are extraordinary and to keep up the home hygiene.....which isn't a whole lot except instead of using a medicinal mouthwash I use Nano Silver and I hold it in my mouth and swish it around for 4-5 minutes and then I swallow it, so it can keep on working and removing other yucky things as it travels through my gut.
I bet it would cure thrush quite quickly and take care of other intestinal business as well. It has been a game changer in our household. I can share the pdf web link that explains in depth the usage and how to take it for certain things like bronchitis, ear aches, skin issues etc.....many uses.
https://silveruseinstitute.com/
You can get a free Ecopy or purchase the book.
Here's to more healing and happier mental outlook days
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
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Pebbledash
- Gentoo Penguin
- Posts: 260
- Joined: Sun Aug 11, 2013 1:37 pm
Update:
Before I spoke with my gastro last week, the D had improved somewhat of its own accord.
I spoke with my gastro, and we discussed the "stepped" options that Lisa-D had so helpfully outlined (I would have never been able to get a grip on the various line of treatments otherwise). I was surprised about how "drastic" some of the immuno-modulating and -suppressing treatments appear to be, in terms of potential downsides, application, and the close medical monitoring required.
In the end, we decided that a) I continue on the one per day Budesonide but adjust doses up as needed b) take cholestyramine.
I've now been taking the cholestyramine (hate that word) for about two weeks, twice daily, and it seems to be helping. I believe I read somewhere on the forum that it's not necessarily something you want to take forever, so I'll need to look into its limitations/downsides.
For now, though, I'm glad I discussed the alternatives, and I'll continue with the budesonide + cholestyramine. If I can reduce the budesonide to one every other day, that would be a big step forward, but for now happy to say that I am feeling far more balanced than a few weeks ago.
Thanks again for the support of this forum.
Cheers
Paul
Before I spoke with my gastro last week, the D had improved somewhat of its own accord.
I spoke with my gastro, and we discussed the "stepped" options that Lisa-D had so helpfully outlined (I would have never been able to get a grip on the various line of treatments otherwise). I was surprised about how "drastic" some of the immuno-modulating and -suppressing treatments appear to be, in terms of potential downsides, application, and the close medical monitoring required.
In the end, we decided that a) I continue on the one per day Budesonide but adjust doses up as needed b) take cholestyramine.
I've now been taking the cholestyramine (hate that word) for about two weeks, twice daily, and it seems to be helping. I believe I read somewhere on the forum that it's not necessarily something you want to take forever, so I'll need to look into its limitations/downsides.
For now, though, I'm glad I discussed the alternatives, and I'll continue with the budesonide + cholestyramine. If I can reduce the budesonide to one every other day, that would be a big step forward, but for now happy to say that I am feeling far more balanced than a few weeks ago.
Thanks again for the support of this forum.
Cheers
Paul
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tommyboywalker
- Adélie Penguin
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- Joined: Tue Jan 23, 2018 3:49 pm
Hey Paul,
So glad to hear that you have a new "game plan" on how to manage your MC!
The addition of the Cholestyramine may be just the ticket for you; I sincerely hope so. There seem to be more than a few people using Cholestyramine.
With some of our maladies, a multidisciplinary approach or multi med approach is necessary. This surely is not a one size fits all, is it!
All the best, please keep us updated!
So glad to hear that you have a new "game plan" on how to manage your MC!
The addition of the Cholestyramine may be just the ticket for you; I sincerely hope so. There seem to be more than a few people using Cholestyramine.
With some of our maladies, a multidisciplinary approach or multi med approach is necessary. This surely is not a one size fits all, is it!
All the best, please keep us updated!
Hi Paul,
Remember, you can adjust the dosing of the cholestyramine as needed, and that may provide additional significant improvement. If long-term use poses problems, I wasn't aware of that issue. As long as you're mindful of the separation time needed to prevent it from binding medications, supplements, or nutrients in general when you take it, long-term use shouldn't carry any significant risks that I'm aware of. I hope you continue to have success with your treatment program.
Tex
Remember, you can adjust the dosing of the cholestyramine as needed, and that may provide additional significant improvement. If long-term use poses problems, I wasn't aware of that issue. As long as you're mindful of the separation time needed to prevent it from binding medications, supplements, or nutrients in general when you take it, long-term use shouldn't carry any significant risks that I'm aware of. I hope you continue to have success with your treatment program.
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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Pebbledash
- Gentoo Penguin
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- Joined: Sun Aug 11, 2013 1:37 pm
@ Tommyboy: so great to hear from you Tommy, and to know that you are still in town! I sincerely hope you are well . . . have you tapered off the Budesonide completely now?
@Tex: much obliged, as per usual. Funny, I was ignorant of the restriction on cholestyramine, though by instinct I have been taking it twice per day an hour or so from any other meds/supplements. I'll make sure that I continue to take it separately.
Good to hear that there are no long term problems that you know of.
If I could remain in the state I'm in right now, I would be a happy man as far as my MC goes.
Cheers
Paul
@Tex: much obliged, as per usual. Funny, I was ignorant of the restriction on cholestyramine, though by instinct I have been taking it twice per day an hour or so from any other meds/supplements. I'll make sure that I continue to take it separately.
Good to hear that there are no long term problems that you know of.
If I could remain in the state I'm in right now, I would be a happy man as far as my MC goes.
Cheers
Paul
Hi Paul,
I never cease to be amazed by the number of doctors who fail to remind their patients of the restrictions imposed by certain medications. I came very close to bleeding to death a little over ten years ago because a doctor failed to tell me that I couldn't eat any cheese while taking a certain medication. Fortunately, a surgical team was able to work quickly enough to save my life, but it was a very close call.
To prevent any unintentional binding of nutrients, cholestyramine should be taken at least two hours before, or six hours after any other medications, supplements, meals, etc. Failure to follow those rules won't cause any life-threatening issues, but you will slowly become deficient in certain vitamins, minerals, and other nutrients, and the effectiveness of most other medications will be compromised.
Tex
I never cease to be amazed by the number of doctors who fail to remind their patients of the restrictions imposed by certain medications. I came very close to bleeding to death a little over ten years ago because a doctor failed to tell me that I couldn't eat any cheese while taking a certain medication. Fortunately, a surgical team was able to work quickly enough to save my life, but it was a very close call.
To prevent any unintentional binding of nutrients, cholestyramine should be taken at least two hours before, or six hours after any other medications, supplements, meals, etc. Failure to follow those rules won't cause any life-threatening issues, but you will slowly become deficient in certain vitamins, minerals, and other nutrients, and the effectiveness of most other medications will be compromised.
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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Pebbledash
- Gentoo Penguin
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- Joined: Sun Aug 11, 2013 1:37 pm