Your interpretation is probably correct. Sorry about the mixup on the two birth control items. You can only use what's available, obviously. This could turn out to a major issue.
Tex
Supplements and Hormonal Birth Control
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Sorry, I got a bit confused with your last post. Which of interpretation is probably correct? And what do you mean by "this could be a major issue"?
I took one Immodium and two Pepto tablets to get through work. After that bowel movement this morning my anxiety set in so bad that I was shaking at my desk and couldn't concentrate the rest of the day. I skipped lunch and am getting ready to eat dinner but I am scared to eat for fear of getting sick again. This is just miserable honestly. I'll be starting my Trip Sprintec again tonight in a bid to get this cycle over with :/
I took one Immodium and two Pepto tablets to get through work. After that bowel movement this morning my anxiety set in so bad that I was shaking at my desk and couldn't concentrate the rest of the day. I skipped lunch and am getting ready to eat dinner but I am scared to eat for fear of getting sick again. This is just miserable honestly. I'll be starting my Trip Sprintec again tonight in a bid to get this cycle over with :/
The interpretation where you decided that you need to get back on the pill. Your magnesium might be critically low, but until we get the test results to confirm that, get back on the Tri-Sprintec, if that's the one available. At least until we can figure out an alternative. I'll be glad when Brandy gets back. This is way out of my area of expertise.
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.
Hi Tiffany,
My main concern is your pain from sexual relations. At 28 you should not be dealing with this. It sounds like both gyn and functional medical doctor think this is from hormonal BCP?
Are you looking to get off of hormonal birth control totally? Or not?
Suggest do a search on the forum and read everything on birth control. I think Gabes had some good threads.
There are a ton of options out there for women now. My thoughts are avoid anything that is long term impact like the implants in the arm and the 3 month or 6 month shots.
Are you considering barrier methods?
If you decide to make a move in another direction I'd consider doing it while you are on 9 mg or 6 mg budesonide. It will offer some protection.
Want to re read your posts, will come back.
My main concern is your pain from sexual relations. At 28 you should not be dealing with this. It sounds like both gyn and functional medical doctor think this is from hormonal BCP?
Are you looking to get off of hormonal birth control totally? Or not?
Suggest do a search on the forum and read everything on birth control. I think Gabes had some good threads.
There are a ton of options out there for women now. My thoughts are avoid anything that is long term impact like the implants in the arm and the 3 month or 6 month shots.
Are you considering barrier methods?
If you decide to make a move in another direction I'd consider doing it while you are on 9 mg or 6 mg budesonide. It will offer some protection.
Want to re read your posts, will come back.
So you were on the Tri Nessa last fall when your flare started?
In January you started the Tri Sprintic due to the other being discontinued?
I agree get back on the Tri Sprintic to stabilize things then work on your plan.
To recap, it does not sound like bcp (Tri Nessa ) caused your flare as you had been on it for years when flare started? I'm guessing flare due to stress or diet?
One thing Jean always said that resonates with me is that getting in remission for MC trumps everything else health wise.
Secondary issues seem to be pain from sex (serious issue), loss of libido, and stress from all of the above.
Focus on working on remission first and managing stress.
Can you get a third opinion on bc options from PCP or another gyn? Long term in order to eliminate the sex pain you may have to alter bc plan.
There are a lot of options available to women now.
Regarding libido--bcp is linked to low libido, steroids linked to low libido, honestly I think the stress of MC is linked to low libido. I think as other things improve libido will improve.
Sorry I feel like I'm asking a lot of questions.
Sorry about the loss of Mom's dog.
I think your diet is good by the way.
In January you started the Tri Sprintic due to the other being discontinued?
I agree get back on the Tri Sprintic to stabilize things then work on your plan.
To recap, it does not sound like bcp (Tri Nessa ) caused your flare as you had been on it for years when flare started? I'm guessing flare due to stress or diet?
One thing Jean always said that resonates with me is that getting in remission for MC trumps everything else health wise.
Secondary issues seem to be pain from sex (serious issue), loss of libido, and stress from all of the above.
Focus on working on remission first and managing stress.
Can you get a third opinion on bc options from PCP or another gyn? Long term in order to eliminate the sex pain you may have to alter bc plan.
There are a lot of options available to women now.
Regarding libido--bcp is linked to low libido, steroids linked to low libido, honestly I think the stress of MC is linked to low libido. I think as other things improve libido will improve.
Sorry I feel like I'm asking a lot of questions.
Sorry about the loss of Mom's dog.
I think your diet is good by the way.
Tex, thank you for the clarification. And thank you for continuing to answer my many, many questions. I greatly value your input.
Brandy,
I agree, at 28 I never thought I'd have no libido and painful intercourse. I've brought it up to my OBGYN for the last few years but physical examination and labs have never revealed any issues. On paper, I have no reasons to have these symptoms. But I know my body and I have had these issues even when in remission. My husband has been beyond supportive but I would be lying if I said that it hasn't effected our marriage. In regards to getting off the birth control, both my OBGYN and the functional medicine doctor suggested getting off the birth control to try and resolve the lack of libido and to help my body produce its own lubrication (sorry tmi). I don't technically have to be on birth control for the intended purpose, prevention of pregnancy. I had my tubes clamped about five years ago and my husband had a vasectomy about two years ago. I stay on it because I have extremely painful, heavy and long menstrual cycles (as I experienced again the last five days after trying to go off the BC). I was on Tri Nessa from my sons birth in 2008 up until January 2019 and had no issues with it. The pharmacy switched me to Tri Sprintec in January 2019 due to "supplier issues", which I now know was from Tri Nessa being discontinued. As I mentioned above, in the months following the switch last year, I did not notice any issues. I maintained remission until suddenly on September 22nd 2019, I got very sick out of the blue and have been in flare ever since. I do think stress may have caused my flare to begin. 2019 was a very hard year and 2020 is proving to be just as difficult.
I started taking the Tri Sprintec again yesterday, two pills to help make up for the pills I missed. I'll continue to take two pills a day until Saturday when I am caught back up. This should end this painful menstrual cycle and I am praying that it will get my body back in rhythm and maybe these loose stools will ease up. I had watery D this morning again, some formed pieces but mostly D. I don't know if this back slide is because of the attempt to get off the birth control, the stress about my mom and grandma or if the Budesonide is not working for me anymore? I am praying the Budesonide continues to work for me and is not becoming ineffective, that is my biggest fear at the moment. I've lost another 2lbs, so that puts my weight loss at 22lbs so far. I am getting to the point of skin and bones. At 5'7 and 120lbs, I look really frail and all my clothes are falling off me. I'm scared to eat, especially at work because I don't want to be chained to the bathroom during my shift. I took two Pepto this morning after the loose stool and will take a dose every six hours today to hopefully stave off any more episodes.
My stress is through the roof, that I can admit. Thank you for the condolences on moms dog, we are huge animal lovers so it is a hard loss. My mom had her consultation with the oncologist this week and has her biopsy appointment next Tuesday the 28th. My grandma is working with a hematologist at the moment as her initial tests indicated possible leukemia.
I'll continue with the Tri Sprintec until my body is back in its normal rhythm (period stopped and over). And then I may call my OBGYN to see if these any other options, although this still makes me nervous because I am reintroducing a completely new medication to my symptom and worry that will make things worse. From what I researched, there are no birth control pills that do not contain lactose, but then again Tri Nessa (my original BC) had lactose and it didn't seem to be an issue.
And thank you for commenting on my current diet being ok. I eat the same things every single day so as to prevent any change ups for my body. I just wish I had seen some progress with the diet since last fall. My body does not seem to be cooperating with me :/
Brandy,
I agree, at 28 I never thought I'd have no libido and painful intercourse. I've brought it up to my OBGYN for the last few years but physical examination and labs have never revealed any issues. On paper, I have no reasons to have these symptoms. But I know my body and I have had these issues even when in remission. My husband has been beyond supportive but I would be lying if I said that it hasn't effected our marriage. In regards to getting off the birth control, both my OBGYN and the functional medicine doctor suggested getting off the birth control to try and resolve the lack of libido and to help my body produce its own lubrication (sorry tmi). I don't technically have to be on birth control for the intended purpose, prevention of pregnancy. I had my tubes clamped about five years ago and my husband had a vasectomy about two years ago. I stay on it because I have extremely painful, heavy and long menstrual cycles (as I experienced again the last five days after trying to go off the BC). I was on Tri Nessa from my sons birth in 2008 up until January 2019 and had no issues with it. The pharmacy switched me to Tri Sprintec in January 2019 due to "supplier issues", which I now know was from Tri Nessa being discontinued. As I mentioned above, in the months following the switch last year, I did not notice any issues. I maintained remission until suddenly on September 22nd 2019, I got very sick out of the blue and have been in flare ever since. I do think stress may have caused my flare to begin. 2019 was a very hard year and 2020 is proving to be just as difficult.
I started taking the Tri Sprintec again yesterday, two pills to help make up for the pills I missed. I'll continue to take two pills a day until Saturday when I am caught back up. This should end this painful menstrual cycle and I am praying that it will get my body back in rhythm and maybe these loose stools will ease up. I had watery D this morning again, some formed pieces but mostly D. I don't know if this back slide is because of the attempt to get off the birth control, the stress about my mom and grandma or if the Budesonide is not working for me anymore? I am praying the Budesonide continues to work for me and is not becoming ineffective, that is my biggest fear at the moment. I've lost another 2lbs, so that puts my weight loss at 22lbs so far. I am getting to the point of skin and bones. At 5'7 and 120lbs, I look really frail and all my clothes are falling off me. I'm scared to eat, especially at work because I don't want to be chained to the bathroom during my shift. I took two Pepto this morning after the loose stool and will take a dose every six hours today to hopefully stave off any more episodes.
My stress is through the roof, that I can admit. Thank you for the condolences on moms dog, we are huge animal lovers so it is a hard loss. My mom had her consultation with the oncologist this week and has her biopsy appointment next Tuesday the 28th. My grandma is working with a hematologist at the moment as her initial tests indicated possible leukemia.
I'll continue with the Tri Sprintec until my body is back in its normal rhythm (period stopped and over). And then I may call my OBGYN to see if these any other options, although this still makes me nervous because I am reintroducing a completely new medication to my symptom and worry that will make things worse. From what I researched, there are no birth control pills that do not contain lactose, but then again Tri Nessa (my original BC) had lactose and it didn't seem to be an issue.
And thank you for commenting on my current diet being ok. I eat the same things every single day so as to prevent any change ups for my body. I just wish I had seen some progress with the diet since last fall. My body does not seem to be cooperating with me :/
One other possibility for the chronic low libido: Hypothyroidism can cause many possible issues, including symptoms such as this, and according to our own survey, MC patients are 7 times as likely as someone in the general population to have thyroid issues. If you haven't had your thyroid function labs checked lately, it might be a good idea to do so. Be sure that your Free T4 and Free T3 are included in the testing. Don't let a doctor convince you that just because your TSH is in the normal range, everything is copacetic.
My TSH tested perfectly normal (with or without thyroid supplements), but my Free T4 was below range, so I talked my GP into letting me try a small thyroid supplement. It helped, but not enough, so I switch to Armour, and I've taken Armour for about 15 years, now. When my doctor (a different doctor) cut my Armour dose in half a few years ago, I had cardiac issues, that culminated in a stroke. My heart was skipping beats, and that continued occasionally even after the stroke. It took me a year or more and numerous tests to track down the medical research and figure out that the undertreated hypothyroidism was causing compromised kidney function, which in turn was causing the cardiac issues. IOW as I mentioned before, seemingly insignificant changes can have very profound effects.
Thyroid function controls most of the important autonomic body processes, and most doctors don't have the foggiest idea how important this actually is for our overall health. The thyroid regulates either directly or indirectly, most or all of our hormone production and utilization.
This may or may not be the cause of your issues, but it's worth ruling out.
And I'll point out that in general, endocrinologists are much harder to deal with than GPs on thyroid issues, because they think they know what they're doing, even when they don't. They go by the book, so those of us with unusual causes of thyroid issues will seldom get any help from them. But that's just my opinion based on our accumulated experiences on this forum.
Tex
My TSH tested perfectly normal (with or without thyroid supplements), but my Free T4 was below range, so I talked my GP into letting me try a small thyroid supplement. It helped, but not enough, so I switch to Armour, and I've taken Armour for about 15 years, now. When my doctor (a different doctor) cut my Armour dose in half a few years ago, I had cardiac issues, that culminated in a stroke. My heart was skipping beats, and that continued occasionally even after the stroke. It took me a year or more and numerous tests to track down the medical research and figure out that the undertreated hypothyroidism was causing compromised kidney function, which in turn was causing the cardiac issues. IOW as I mentioned before, seemingly insignificant changes can have very profound effects.
Thyroid function controls most of the important autonomic body processes, and most doctors don't have the foggiest idea how important this actually is for our overall health. The thyroid regulates either directly or indirectly, most or all of our hormone production and utilization.
This may or may not be the cause of your issues, but it's worth ruling out.
And I'll point out that in general, endocrinologists are much harder to deal with than GPs on thyroid issues, because they think they know what they're doing, even when they don't. They go by the book, so those of us with unusual causes of thyroid issues will seldom get any help from them. But that's just my opinion based on our accumulated experiences on this forum.
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,
Thank you for that suggestion and explanation. I don't recall getting my thyroid checked unless that is something they do in lab work during your normal yearly exam? My last physical (pap smear/breast exam) appointment was in late September 2019. I'll look into getting that checked as soon as I can. I will need to wait until I see what my bills from the Functional Medicine doctor come out to be. Because its a new year, I haven't hit my deductible yet so bills are guaranteed.
I do have another question, after reading through a lot of the other posts on this forum, I've come to realize that I may be taking Uceris 9mg tablets instead of the standard Budesonide capsules... The bottle does say "Budesonide Extended Release 9mg". It is a circular white tablet. Would this effect me tapering down? I ask because the taper dose I tried (and failed) in December was two 3mg capsules once a day. It was a pink/grey capsule that says "Entocort 3mg EC". Because don't these two medicines activate in different parts of the intestines/colon? My GI doctor is a complete dolt so I wouldn't be surprised if he prescribed the wrong medication. But I don't really know if that makes a difference?
Brandy,
I never take any ibuprofen, advil, aspirin. When I am on my birth control pill, my periods are manageable and I only use a heating pad for the mild cramps. If I am really, really sick I will use Tylenol sparingly. But the last time I used that was two years ago when I had the flu.
Thank you for that suggestion and explanation. I don't recall getting my thyroid checked unless that is something they do in lab work during your normal yearly exam? My last physical (pap smear/breast exam) appointment was in late September 2019. I'll look into getting that checked as soon as I can. I will need to wait until I see what my bills from the Functional Medicine doctor come out to be. Because its a new year, I haven't hit my deductible yet so bills are guaranteed.
I do have another question, after reading through a lot of the other posts on this forum, I've come to realize that I may be taking Uceris 9mg tablets instead of the standard Budesonide capsules... The bottle does say "Budesonide Extended Release 9mg". It is a circular white tablet. Would this effect me tapering down? I ask because the taper dose I tried (and failed) in December was two 3mg capsules once a day. It was a pink/grey capsule that says "Entocort 3mg EC". Because don't these two medicines activate in different parts of the intestines/colon? My GI doctor is a complete dolt so I wouldn't be surprised if he prescribed the wrong medication. But I don't really know if that makes a difference?
Brandy,
I never take any ibuprofen, advil, aspirin. When I am on my birth control pill, my periods are manageable and I only use a heating pad for the mild cramps. If I am really, really sick I will use Tylenol sparingly. But the last time I used that was two years ago when I had the flu.
Tiffany,
Buidesinide (conventional budesonide) activates in the terminal ileum (and this is where most of the inflammation is located for most MC patients). But this allows up to 19 % of the budesonide to be absorbed into the bloodstream (which slowly creates systemic effects, especially affecting the adrenals). Uceris was designed to treat UC, so it activates in the distal colon (about the last third of the colon). That means that Uceris has absolutely no systemic effects, which is good, because that means that it will have no effect on the adrenals. This implies that any user can stop using it cold turkey, without any risk of adrenal damage. However, when treating MC with a cortisteroid, the risk of adrenal damage is not the only consideration. We have to be careful that we do not taper the dose too quickly because corticosteroids suppress inflammation by two actions.
1. They suppress mast cell populations and mast cell activation (to prevent the release of histamine and other proinflammatory agents).
2. They enhance bile acid recycling (in the terminal ileum) so that Bile Acid Malabsorption (BAM) is not as likely to cause diarrhea.
When we stop a corticosteroid treatment, we have to prevent a sudden rebound of mast cell populations (because this is what triggers a relapse by 85 % of users after stopping a corticosteroid treatment). With budesonide, we can do this by a very slow taper of the drug dose. With Uceris this not really practical, because of the way it's formulated (9 mg in a tablet). However, so far, Uceris seems to be working well for members here, despite the fact that it's not easily tapered. Perhaps this is because of the complete absence of systemic effects. Members here have sort of tapered the dose by taking one pill every other day for a week or so, then one every third day for a week or so before completely stopping. So far, that seems to be working for most people. It's possible that you might be able to just stop the dose abruptly without any problems, but I'm not aware of anyone who has been bold enough to try that.
If BAM surfaces after a corticosteroid treatment is ended, the indicated treatment is cholestyramine.
The bottom line is, your GI doc may not understand how these drugs work, but you should have good results, anyway.
I hope this helps.
Tex
Buidesinide (conventional budesonide) activates in the terminal ileum (and this is where most of the inflammation is located for most MC patients). But this allows up to 19 % of the budesonide to be absorbed into the bloodstream (which slowly creates systemic effects, especially affecting the adrenals). Uceris was designed to treat UC, so it activates in the distal colon (about the last third of the colon). That means that Uceris has absolutely no systemic effects, which is good, because that means that it will have no effect on the adrenals. This implies that any user can stop using it cold turkey, without any risk of adrenal damage. However, when treating MC with a cortisteroid, the risk of adrenal damage is not the only consideration. We have to be careful that we do not taper the dose too quickly because corticosteroids suppress inflammation by two actions.
1. They suppress mast cell populations and mast cell activation (to prevent the release of histamine and other proinflammatory agents).
2. They enhance bile acid recycling (in the terminal ileum) so that Bile Acid Malabsorption (BAM) is not as likely to cause diarrhea.
When we stop a corticosteroid treatment, we have to prevent a sudden rebound of mast cell populations (because this is what triggers a relapse by 85 % of users after stopping a corticosteroid treatment). With budesonide, we can do this by a very slow taper of the drug dose. With Uceris this not really practical, because of the way it's formulated (9 mg in a tablet). However, so far, Uceris seems to be working well for members here, despite the fact that it's not easily tapered. Perhaps this is because of the complete absence of systemic effects. Members here have sort of tapered the dose by taking one pill every other day for a week or so, then one every third day for a week or so before completely stopping. So far, that seems to be working for most people. It's possible that you might be able to just stop the dose abruptly without any problems, but I'm not aware of anyone who has been bold enough to try that.
If BAM surfaces after a corticosteroid treatment is ended, the indicated treatment is cholestyramine.
The bottom line is, your GI doc may not understand how these drugs work, but you should have good results, anyway.
I hope this helps.
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 Tiffany,
We've had many people get in remission on Entocort. It has been available for a long time. We've also had folks get in remission on Uceris. They both contain budesonide but work a little different as Tex mentioned. I'm assuming you used it 7 years ago and it worked? If it worked for you last time it should kick in at some point. We have had some Europeans on the 9 mg dose for a long time.....like 6 or 7 months before stepping down.
Can you look back to when you first went into remission and duplicate what you did then?
Big picture I'd concentrate on your MC remission and stress management. Stress really affects our disease.
In order for me to get into remission on my second (9 month flare) I had to do a lot of positive self talk. I set my cell phone alarm to ring 5 minutes every 2 hours and would do a kind of
meditation/prayer every 2 hours. I don't like massages and I don't like counseling but I've implemented both in the past for some situations and they did help me with stress. I got into
remission without the use of drugs after my 9 month flare. I think there was a huge mental component to my recovery. It was kind of weird, I think for 9 months I thought I would just
bounce back into remission. It wasn't until I started doing a lot of positive self talk...."Brandy you've done this before you can do this again" etc that I was able to work back into remission.
It was positive self talk/stress management, the few food regimen, and temporarily eliminating supplements that kicked me back into remission. This happened pretty quickly, like around a 2 week time table which was amazing after I'd suffered for 9 months.
I think the BC part of the equation will have to be trial and error. Our disease is considered to be a disease of little old ladies. Men do get our disease. Women under 50 also get our
disease. However more women get our disease over 50. This is speculative but I suspect mens higher level of testosterone is protective against our disease. I suspect womens higher
hormone levels under the age of 50 are protective against the disease. If you are able to come off of the BCP at some future time period I think your MC will stay in remission.
I think that it is tough to attack two health situations at once.
Before I forget....I saw you are taking anti histamines. Anti histamines are protective against MC. I'd keep taking them for now. They are, however, also linked to low libido and
pain with sex. What happens is the anti histamines dry out our tissues "down there." Our tissues "down there" are also mucus membranes. Again, I'd keep taking the anti histamines
for now but after you are in MC remission you might want to think about going 1/2 dose or 1/4 dose and see if you get by. The low estrogen effect of the BCP (drying) coupled with anti histamines drying out mucus membranes could be causing you a double whammy of pain.
Did gyn or functional med doc give any suggestions for period pain after discontinuing BCP and since we can't take Ibuproferin?
Here are my thoughts. We are under a high level of inflammation when we are in an MC flare. I suspect period pain would be high given the high level of inflammation in our body when
not in remission. It may be worth stopping BCP again once you have been in a solid MC remission for at least several months or more. Inflammation levels in your body will have dropped.
Conceptually (this is just a guess) period pain might be less. I was never on BCP or hormonal birth control. My period pain was probably average. (I'm 58 now). I'm almost certain
if I was menstruating and eating my MC safe diet my period pain would be a lot less than what I experienced. I ate out at restaurants a lot pre MC and ate a lot of processed foods and
the worst was the bloating and swelling of my calves. I believe the pain I had would have been less eating an MC safe diet (by naturally being low sodium).
I'm flying again tomorrow (yikes) but I have a bit more to add.
PS. Have you ever tried cholestyramine? It is another drug option. You don't use at same time as budesonide.
We've had many people get in remission on Entocort. It has been available for a long time. We've also had folks get in remission on Uceris. They both contain budesonide but work a little different as Tex mentioned. I'm assuming you used it 7 years ago and it worked? If it worked for you last time it should kick in at some point. We have had some Europeans on the 9 mg dose for a long time.....like 6 or 7 months before stepping down.
Can you look back to when you first went into remission and duplicate what you did then?
Big picture I'd concentrate on your MC remission and stress management. Stress really affects our disease.
In order for me to get into remission on my second (9 month flare) I had to do a lot of positive self talk. I set my cell phone alarm to ring 5 minutes every 2 hours and would do a kind of
meditation/prayer every 2 hours. I don't like massages and I don't like counseling but I've implemented both in the past for some situations and they did help me with stress. I got into
remission without the use of drugs after my 9 month flare. I think there was a huge mental component to my recovery. It was kind of weird, I think for 9 months I thought I would just
bounce back into remission. It wasn't until I started doing a lot of positive self talk...."Brandy you've done this before you can do this again" etc that I was able to work back into remission.
It was positive self talk/stress management, the few food regimen, and temporarily eliminating supplements that kicked me back into remission. This happened pretty quickly, like around a 2 week time table which was amazing after I'd suffered for 9 months.
I think the BC part of the equation will have to be trial and error. Our disease is considered to be a disease of little old ladies. Men do get our disease. Women under 50 also get our
disease. However more women get our disease over 50. This is speculative but I suspect mens higher level of testosterone is protective against our disease. I suspect womens higher
hormone levels under the age of 50 are protective against the disease. If you are able to come off of the BCP at some future time period I think your MC will stay in remission.
I think that it is tough to attack two health situations at once.
Before I forget....I saw you are taking anti histamines. Anti histamines are protective against MC. I'd keep taking them for now. They are, however, also linked to low libido and
pain with sex. What happens is the anti histamines dry out our tissues "down there." Our tissues "down there" are also mucus membranes. Again, I'd keep taking the anti histamines
for now but after you are in MC remission you might want to think about going 1/2 dose or 1/4 dose and see if you get by. The low estrogen effect of the BCP (drying) coupled with anti histamines drying out mucus membranes could be causing you a double whammy of pain.
Did gyn or functional med doc give any suggestions for period pain after discontinuing BCP and since we can't take Ibuproferin?
Here are my thoughts. We are under a high level of inflammation when we are in an MC flare. I suspect period pain would be high given the high level of inflammation in our body when
not in remission. It may be worth stopping BCP again once you have been in a solid MC remission for at least several months or more. Inflammation levels in your body will have dropped.
Conceptually (this is just a guess) period pain might be less. I was never on BCP or hormonal birth control. My period pain was probably average. (I'm 58 now). I'm almost certain
if I was menstruating and eating my MC safe diet my period pain would be a lot less than what I experienced. I ate out at restaurants a lot pre MC and ate a lot of processed foods and
the worst was the bloating and swelling of my calves. I believe the pain I had would have been less eating an MC safe diet (by naturally being low sodium).
I'm flying again tomorrow (yikes) but I have a bit more to add.
PS. Have you ever tried cholestyramine? It is another drug option. You don't use at same time as budesonide.
Tex,
Thank you for that explanation. That does help me understand the Budesonide taper and the reason why people experience relapse on it. I'll be sure to be up on my Allegra the next time I try to taper. I tried using Questran the last time I tapered and that didn't seem to help but I am willing to try it again should the need arise. I am also glad to know that I am in fact taking Uceris and how I need to taper that medication when ready. I am irritated but not shocked that my GI doctor isn't aware of how I need to taper Uceris and instead gave me Budesonide capsules instead. When I am ready to taper, I will do as suggested and go down to one pill every other day for a week or so and then down to every other day for a week or so; and so on.
Brandy,
I looked back through the documentation I have from the last time I was in a flare (seven years ago). And it looks like I started the Budesonide (3 capsules three times a day) around December 2012 and did a VERY slow taper for about eight months until August 2013. From what I can tell, the last few months I was doing one 3mg capsule every other day, then every two days and then every three/four days. I also took Pepto tablets once or twice a day as needed during that time. It was slow going that is for sure, but I did achieve remission way back when.
I absolutely believe this flare is due to stress. As I mentioned above, 2019 was not a very good year for our family and I think my stress snow balled until my body couldn't handle it anymore, thus resulting in my flare. And now it seems 2020 is not going much better so far. I am trying to think positive but my mom and my grandma's health issues are looming heavily on me. I try to work out about three times a week (if I am feeling up to it) for about 30 minutes to an hour at a time. I do low impact workouts like pilates and yoga. This helps me feel accomplished, healthy and strong. We started going to church about two months ago and I find peace in the sermons as well. I am working on praying more and being kind to myself. I like your idea of setting alarms to take time for yourself. I think I could greatly benefit from this. I always put everyone else first until I am worn down to basically nothing. As the saying goes "You can't pour from an empty cup". I have thought about looking into some meditation as well, I have heard great things about and I could definitely use some inner peace. I also have been trying to get my son into bed a bit earlier so I can take some time, about 30 minutes, each night before bed so I can read my book or watch a short show on tv; "me time" essentially. Since my husband works night, our sons entire routine from sun up to sun down is on me; so it is quite a lot of handle; especially when I am already fatigued from working full time. I am such an anxious person. I have generalized anxiety as well as social anxiety; so its a double whammy that effects me every second of every day. I've always said that if I could just get my stress and anxiety in check; that I would fare so much better with my physical health as well. I am hoping that, like you, there's comes a point in which I can plateau with this stress and maybe finally hit my remission starting point.
I will continue to take my Allegra daily. I had heard that antihistamines can be drying and had previously wondered if that contributed to the dryness "down there". Maybe it would help if I tried to limit the frequency in which I take the Benedryl, only taking it when absolutely necessary.
I am going to hold off on trying to go off the birth control until I am in full remission for a good amount of time. I think trying to go off of it in this flare was just too much on my already sick body and my body was not having it. All doctors I have spoken with have just to use a heating pad for cramps, which helps me during my birth control induced period but not during my "off birth control" cycle. Being a woman is not an easy job!
Thank you for that explanation. That does help me understand the Budesonide taper and the reason why people experience relapse on it. I'll be sure to be up on my Allegra the next time I try to taper. I tried using Questran the last time I tapered and that didn't seem to help but I am willing to try it again should the need arise. I am also glad to know that I am in fact taking Uceris and how I need to taper that medication when ready. I am irritated but not shocked that my GI doctor isn't aware of how I need to taper Uceris and instead gave me Budesonide capsules instead. When I am ready to taper, I will do as suggested and go down to one pill every other day for a week or so and then down to every other day for a week or so; and so on.
Brandy,
I looked back through the documentation I have from the last time I was in a flare (seven years ago). And it looks like I started the Budesonide (3 capsules three times a day) around December 2012 and did a VERY slow taper for about eight months until August 2013. From what I can tell, the last few months I was doing one 3mg capsule every other day, then every two days and then every three/four days. I also took Pepto tablets once or twice a day as needed during that time. It was slow going that is for sure, but I did achieve remission way back when.
I absolutely believe this flare is due to stress. As I mentioned above, 2019 was not a very good year for our family and I think my stress snow balled until my body couldn't handle it anymore, thus resulting in my flare. And now it seems 2020 is not going much better so far. I am trying to think positive but my mom and my grandma's health issues are looming heavily on me. I try to work out about three times a week (if I am feeling up to it) for about 30 minutes to an hour at a time. I do low impact workouts like pilates and yoga. This helps me feel accomplished, healthy and strong. We started going to church about two months ago and I find peace in the sermons as well. I am working on praying more and being kind to myself. I like your idea of setting alarms to take time for yourself. I think I could greatly benefit from this. I always put everyone else first until I am worn down to basically nothing. As the saying goes "You can't pour from an empty cup". I have thought about looking into some meditation as well, I have heard great things about and I could definitely use some inner peace. I also have been trying to get my son into bed a bit earlier so I can take some time, about 30 minutes, each night before bed so I can read my book or watch a short show on tv; "me time" essentially. Since my husband works night, our sons entire routine from sun up to sun down is on me; so it is quite a lot of handle; especially when I am already fatigued from working full time. I am such an anxious person. I have generalized anxiety as well as social anxiety; so its a double whammy that effects me every second of every day. I've always said that if I could just get my stress and anxiety in check; that I would fare so much better with my physical health as well. I am hoping that, like you, there's comes a point in which I can plateau with this stress and maybe finally hit my remission starting point.
I will continue to take my Allegra daily. I had heard that antihistamines can be drying and had previously wondered if that contributed to the dryness "down there". Maybe it would help if I tried to limit the frequency in which I take the Benedryl, only taking it when absolutely necessary.
I am going to hold off on trying to go off the birth control until I am in full remission for a good amount of time. I think trying to go off of it in this flare was just too much on my already sick body and my body was not having it. All doctors I have spoken with have just to use a heating pad for cramps, which helps me during my birth control induced period but not during my "off birth control" cycle. Being a woman is not an easy job!
I also wanted to add that I called my GI doctor and left a voicemail on the nurses line LAST Thursday, January 23rd, and they just now called me back today, January 29th. Ridiculous. Basically, I called because I have been worried that the Uceris might not be working as well as it was before and wanted to see if that was the case; what the next step would be. It seems my stool quality has declined over the last few weeks, last week being the worst when I tried to go off my birth control. But now I am wondering if that was just a coincidence? As of last Wednesday, January 22nd, I started taking my birth control again regularly (taking two pills a day until I was caught back up). As of Saturday this past weekend I was caught back up and now just take the normal once a day pill.
That being said, I am taking four doses of Pepto a day (on top of my normal 9mg Uceris) and still having mushy stools. Usually in the morning. TMI, but the first portion is softly formed with the last portion usually being D. I'd say type 4 (mushy type 4) to type 6 on the stool chart all in all. Am I expecting too much in regards to how formed my stools should be? I just feel like with 9mg Uceris and FOUR full doses of Pepto, that I should be more leaning towards constipation than loose stools. On these forums I've seen that most people stay on 9mg until they get constipated but that hasn't happened for me yet. Back in December, I feel like I may have been closer to that stage, usually only having one well formed stool once a day to every other day, but after trying to taper; failing; and then having to go back up to 9mg again; my progress has just regressed if anything.
When the GI doctors office finally did call back, the nurse said that the GI doctor wanted to do a colonoscopy because I don't seem to be responding to the meds, even after almost four months. I've seen on here and I feel the same way, that another colonoscopy would be unnecessary (and costly as I haven't met my deductible for the year yet). Am I right in that thinking or should I have another colonoscopy? It has been about eight years since my last one. I am scared to go through that procedure again and fear being in the hospital setting as I have a history of c-diff and do not want to expose myself to that risk again. But then I have a nagging thought that maybe there IS another reason I am not responding to the meds like I should. What if I have some type of cancer, there is a lot of cancer in my family. I feel like I shouldn't be in such a lengthy flare with no real progress when I am taking a high dose steroid AND sticking to my diet religiously. I told the nurse pretty much what I said above, that I didn't feel like another colonoscopy was necessary as I already have a diagnosis. I said that I know that I want to stay on my current 9mg Uceris as my stress is really high due to my mom and grandma both potentially facing cancer diagnosis. I said that I know I am not ready to taper down and feel like I need to be on this current dose another month or two at least and see where I am at then. If things don't get better or get worse, then I potentially want to look into other medication options or some other options if needed. She said she would pass what I had said along to the doctor but that they usually don't want to prescribe steroids that long due to the "risk". So now I feel like they won't renew my prescription as needed in two weeks. My husband said to call my primary care doctor and ask for a referral to another doctor but I know that will take awhile to get referred and then take awhile to actually get in to see the doctor. And I, admittedly, don't have any real confidence in GI doctors. I am mess, I am not going to lie. I feel like they are strong arming me. I feel like my body is failing me. I feel like my anxiety is literally ruling my life. Any thoughts/insight/advice would be more than appreciated. Thank you <3
That being said, I am taking four doses of Pepto a day (on top of my normal 9mg Uceris) and still having mushy stools. Usually in the morning. TMI, but the first portion is softly formed with the last portion usually being D. I'd say type 4 (mushy type 4) to type 6 on the stool chart all in all. Am I expecting too much in regards to how formed my stools should be? I just feel like with 9mg Uceris and FOUR full doses of Pepto, that I should be more leaning towards constipation than loose stools. On these forums I've seen that most people stay on 9mg until they get constipated but that hasn't happened for me yet. Back in December, I feel like I may have been closer to that stage, usually only having one well formed stool once a day to every other day, but after trying to taper; failing; and then having to go back up to 9mg again; my progress has just regressed if anything.
When the GI doctors office finally did call back, the nurse said that the GI doctor wanted to do a colonoscopy because I don't seem to be responding to the meds, even after almost four months. I've seen on here and I feel the same way, that another colonoscopy would be unnecessary (and costly as I haven't met my deductible for the year yet). Am I right in that thinking or should I have another colonoscopy? It has been about eight years since my last one. I am scared to go through that procedure again and fear being in the hospital setting as I have a history of c-diff and do not want to expose myself to that risk again. But then I have a nagging thought that maybe there IS another reason I am not responding to the meds like I should. What if I have some type of cancer, there is a lot of cancer in my family. I feel like I shouldn't be in such a lengthy flare with no real progress when I am taking a high dose steroid AND sticking to my diet religiously. I told the nurse pretty much what I said above, that I didn't feel like another colonoscopy was necessary as I already have a diagnosis. I said that I know that I want to stay on my current 9mg Uceris as my stress is really high due to my mom and grandma both potentially facing cancer diagnosis. I said that I know I am not ready to taper down and feel like I need to be on this current dose another month or two at least and see where I am at then. If things don't get better or get worse, then I potentially want to look into other medication options or some other options if needed. She said she would pass what I had said along to the doctor but that they usually don't want to prescribe steroids that long due to the "risk". So now I feel like they won't renew my prescription as needed in two weeks. My husband said to call my primary care doctor and ask for a referral to another doctor but I know that will take awhile to get referred and then take awhile to actually get in to see the doctor. And I, admittedly, don't have any real confidence in GI doctors. I am mess, I am not going to lie. I feel like they are strong arming me. I feel like my body is failing me. I feel like my anxiety is literally ruling my life. Any thoughts/insight/advice would be more than appreciated. Thank you <3
Tiffany,
The stress resulting from all that anxiety isn't helping, and could be a major influence on whether or not you're able to reach remission.
Virtually all gastroenterologists want to perform another colonoscopy to see why their treatment isn't working. They never find anything. But it's a good income item for them. Not so much for the patient. It's an invasive procedure that's certainly not without risk, especially for MC patients.
Personally, I would just say no. If you want to rule out cancer, that's easily done these days. You don't need a doctor for that. Just order a test kit yourself. You can even order them on Amazon.
https://www.amazon.com/s?k=screening+te ... nb_sb_noss
If you're concerned about running out of budesonide, order some budez cr from Alldaychemist. You won't need a prescription there (if they ask for one just ignore that). Don't order more than a 3-month supply at one time (270 capsules) or it may not get through US Customs. Expect at least ten days to 2 weeks for delivery. Many members here use this service with good results.
https://www.alldaychemist.com/budez-cr.html
I hope this helps.
Tex
The stress resulting from all that anxiety isn't helping, and could be a major influence on whether or not you're able to reach remission.
Virtually all gastroenterologists want to perform another colonoscopy to see why their treatment isn't working. They never find anything. But it's a good income item for them. Not so much for the patient. It's an invasive procedure that's certainly not without risk, especially for MC patients.
Personally, I would just say no. If you want to rule out cancer, that's easily done these days. You don't need a doctor for that. Just order a test kit yourself. You can even order them on Amazon.
https://www.amazon.com/s?k=screening+te ... nb_sb_noss
If you're concerned about running out of budesonide, order some budez cr from Alldaychemist. You won't need a prescription there (if they ask for one just ignore that). Don't order more than a 3-month supply at one time (270 capsules) or it may not get through US Customs. Expect at least ten days to 2 weeks for delivery. Many members here use this service with good results.
https://www.alldaychemist.com/budez-cr.html
I hope this helps.
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.