My first post....I have had UC for almost a decade and have now been diagnosed with Lymphocyte Colitis along with heart rate and rhythm problems. Had 4 ablations. Heart doing OK right now..yeah!! After being in the hospital at my husband's side for 12 days (open heart) I came home with gut distended, constipated feeling horrible, had absolute blowout which has not stopped for over 8 weeks. Now I have had D but nothing like this. So colonoscopy and now have been diagnosed with LC. Really thought this whole IBD life couldn't get worse but this D is crazy. I have never started any pharm drugs to control UC, been diet and not eating. Now they're telling me really need to start on this Budesonide..9,6,3 taper.
Question is:
Would you start on the pharm meds again giving what you have been through and where you are at now? How many of you guys are trying to get off pharm meds?
Is there any other one that has both Ulcerative and Lymphocyte Colitis or heard of this?
Thank you for any input!!
If you knew what you no now, would U have started meds?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
If you knew what you no now, would U have started meds?
Selah
Ulcerative Colitis since 2010, Just Diagnosed with
Lymphocyte Colitis totally puzzled!!
Ulcerative Colitis since 2010, Just Diagnosed with
Lymphocyte Colitis totally puzzled!!
HI Selah,
Personal opinion...I would try to do it without meds. Meds cover up parts of the progress, and lead to eating foods perhaps that you react to, whereas without the meds you still react but once you bring your food group into a safe existence your symptoms will start to back off and you can actually notice it. This gives you a much better foundation to set up your dietary tracking and beginning point.
If you're living miserably and can't focus on the dietary part of healing then perhaps you may need to begin with meds just to give your mind/body a break, there are a few rules to doing it but it can be done it just takes a little longer to get to the end result. All of this is about progress not perfection so if meds will help you cope better and your Dr will allow a SLOW taper say up to 6 months then by all means try it.
Personal opinion...I would try to do it without meds. Meds cover up parts of the progress, and lead to eating foods perhaps that you react to, whereas without the meds you still react but once you bring your food group into a safe existence your symptoms will start to back off and you can actually notice it. This gives you a much better foundation to set up your dietary tracking and beginning point.
If you're living miserably and can't focus on the dietary part of healing then perhaps you may need to begin with meds just to give your mind/body a break, there are a few rules to doing it but it can be done it just takes a little longer to get to the end result. All of this is about progress not perfection so if meds will help you cope better and your Dr will allow a SLOW taper say up to 6 months then by all means try it.
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
Hi Selah,
I did take Budesonide for 4 1/2 months and yes, I would do it again. At the time I was working as a school psychologist and I needed to function. I also used that time to get my diet in order so that once I was titrating off Budesonide I would not rebound. It worked well. I had to eliminate gluten, dairy and soy. Once I was no longer taking Budesonide, I found I was reacting to eggs so I eliminated them. But I titrated off without any problems and then I achieved remission about 2 years later, managing on diet alone.
I dont think I could have gotten back on my feet as quickly as I did, without Budesonide to reduce the inflammation, and that was important to me at the time.
Best wishes,
Carol
I did take Budesonide for 4 1/2 months and yes, I would do it again. At the time I was working as a school psychologist and I needed to function. I also used that time to get my diet in order so that once I was titrating off Budesonide I would not rebound. It worked well. I had to eliminate gluten, dairy and soy. Once I was no longer taking Budesonide, I found I was reacting to eggs so I eliminated them. But I titrated off without any problems and then I achieved remission about 2 years later, managing on diet alone.
I dont think I could have gotten back on my feet as quickly as I did, without Budesonide to reduce the inflammation, and that was important to me at the time.
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
Hi Selah,
Welcome to the group. Yes, we have had several members over the years who developed both UC and MC, but it doesn't seem to happen very often. Here's my two cents worth:
You mention that you've used diet to control UC. Have you by any chance been meticulously avoiding gluten? The reason I ask is because it's the primary dietary problem for most of us, and the intestinal damage caused by gluten takes a long time to heal. The half-life of antigliadin antibodies is 120 days, whereas the half-life of most other food antibodies is only 5 or 6 days. Most of us have multiple food sensitivities, but if you already have gluten out of your system, then it's possible that a carefully-chosen elimination diet could get you into remission within a matter of a few days.
However, if you've only minimized gluten, and haven't avoided it 100 %, your body hasn't been able to do any healing, and the diet will probably require about 3–6 months to bring remission (without any meds). We're all different in healing times. Personally, I never used any meds during my recovery, but budesonide wasn't even available back then. As Carol suggests, if you desperately need to stop the diarrhea, then a combination of budesonide and the diet should bring rapid improvement (remission within a week or two). However, in order to avoid a relapse of symptoms after ending the budesonide treatment, we find that most of us have to use it longer than most GI docs recommend, and the dose must be tapered very, very slowly. Time to remission of symptoms varies a great deal by the individual, but these are ballpark estimates that work for most of us.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. Yes, we have had several members over the years who developed both UC and MC, but it doesn't seem to happen very often. Here's my two cents worth:
You mention that you've used diet to control UC. Have you by any chance been meticulously avoiding gluten? The reason I ask is because it's the primary dietary problem for most of us, and the intestinal damage caused by gluten takes a long time to heal. The half-life of antigliadin antibodies is 120 days, whereas the half-life of most other food antibodies is only 5 or 6 days. Most of us have multiple food sensitivities, but if you already have gluten out of your system, then it's possible that a carefully-chosen elimination diet could get you into remission within a matter of a few days.
However, if you've only minimized gluten, and haven't avoided it 100 %, your body hasn't been able to do any healing, and the diet will probably require about 3–6 months to bring remission (without any meds). We're all different in healing times. Personally, I never used any meds during my recovery, but budesonide wasn't even available back then. As Carol suggests, if you desperately need to stop the diarrhea, then a combination of budesonide and the diet should bring rapid improvement (remission within a week or two). However, in order to avoid a relapse of symptoms after ending the budesonide treatment, we find that most of us have to use it longer than most GI docs recommend, and the dose must be tapered very, very slowly. Time to remission of symptoms varies a great deal by the individual, but these are ballpark estimates that work for most of us.
Again, welcome aboard, and please feel free to ask anything.
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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A lot of work ahead of me
- Little Blue Penguin
- Posts: 34
- Joined: Sat Feb 23, 2019 12:55 pm
- Location: Minnesota
I am still on my first month of Budesonide and am meeting with my doctor next week to beg her not to start my taper. My life has peace in it right now without all that D and I am "practicing" my new diet while on the meds and I can still tell that I am no where near ready for the taper just by testing certain things even while on the med. My life was absolutely horrid before this med. Could barely drive to work without fear of accident.
My opinion anyway. YES this med has side affects - my head pounds every day but it's worth it to not have D 20 plus times a day and wake me up at night. I haven't slept through the night in months since the Budesonide.
I have MC - diagnosed a month ago and am petrified to stop the Budesonide. Ever.
Jeanine
My opinion anyway. YES this med has side affects - my head pounds every day but it's worth it to not have D 20 plus times a day and wake me up at night. I haven't slept through the night in months since the Budesonide.
I have MC - diagnosed a month ago and am petrified to stop the Budesonide. Ever.
Jeanine
A lot of work ahead of me
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A lot of work ahead of me
- Little Blue Penguin
- Posts: 34
- Joined: Sat Feb 23, 2019 12:55 pm
- Location: Minnesota
correction: I have slept through the night EVERY night since starting Budesonide. Before that, every night the D would wake me up for a hour or so cycle and that's just crazy - then to try and get up for work. It exhauts a person.
If I was not working and could devote my days to trying to heal without meds, then I would go that route.
If I was not working and could devote my days to trying to heal without meds, then I would go that route.
A lot of work ahead of me
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
my 20Cents worth
it depends
on your lifestyle, (work, family etc)
other health issues
insurance coverage for the budenside
if you have work pressures / family pressures and there is no financial pressure to get the budenside, then embrace the medication option - but please read the posts here and be aware of the best way to taper to minimise issues
if life is not too stressful, and or the medication will be a cost stress, trying diet only is a good option. A good back up solution is to take the script for medication and have it on stand by if the symptoms get to burdensome.
keep in mind there are other effective medication options other than steroid.
in all cases, all treatment options (medication and non medication options) have limited scope of success if the right diet changes are not done, if there is high amounts of toxins/stress, and you are not taking key nutrients that the body needs to moderate inflammation and heal.
it depends
on your lifestyle, (work, family etc)
other health issues
insurance coverage for the budenside
if you have work pressures / family pressures and there is no financial pressure to get the budenside, then embrace the medication option - but please read the posts here and be aware of the best way to taper to minimise issues
if life is not too stressful, and or the medication will be a cost stress, trying diet only is a good option. A good back up solution is to take the script for medication and have it on stand by if the symptoms get to burdensome.
keep in mind there are other effective medication options other than steroid.
in all cases, all treatment options (medication and non medication options) have limited scope of success if the right diet changes are not done, if there is high amounts of toxins/stress, and you are not taking key nutrients that the body needs to moderate inflammation and heal.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
If your doctor is unwilling to extend your prescription and/or wants you to taper too fast, some of us have resorted to purchasing generic Entocort through the online pharmacy alldaychemist. This option has been mentioned many times in the past, but since you are a "newbie" I don't know if are aware of it. You don't need a prescription, and the cost is just a fraction of what is charged here. I just checked and it is $53.63 for 90 capsules, a month's supply. Hopefully you can convince your doctor and work with him/her.
Here is a link to a discussion of this. The string of messages contain a lot of good info.
https://perskyfarms.com/phpBB2/viewtopi ... daychemist
Here is a link to a discussion of this. The string of messages contain a lot of good info.
https://perskyfarms.com/phpBB2/viewtopi ... daychemist
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
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A lot of work ahead of me
- Little Blue Penguin
- Posts: 34
- Joined: Sat Feb 23, 2019 12:55 pm
- Location: Minnesota
thank you for that link! so sweet - luckily, I have met my deductible for the YEAR already with the ER visits, colonoscopy, etc. My cost for Budesonide per month: $48
She better extend it. i ate bacon the other day (testing foods) and had D and reaction. Probably shouldn't have even done that (Gabes will scold me) but now I know bacon is a NO GO. Not ready for a taper.
We will see next week when I go to see the doctor - I can tell already she's a doctor that really doesn't "get it."
She better extend it. i ate bacon the other day (testing foods) and had D and reaction. Probably shouldn't have even done that (Gabes will scold me) but now I know bacon is a NO GO. Not ready for a taper.
We will see next week when I go to see the doctor - I can tell already she's a doctor that really doesn't "get it."
A lot of work ahead of me
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tommyboywalker
- Adélie Penguin
- Posts: 126
- Joined: Tue Jan 23, 2018 3:49 pm
I have the same thoughts. I absolutely would go on Budesonide again.CathyMe. wrote:I would definitely go on Budesonide again. It gave me my life back, took away my symptoms and allowed me time to change my diet.
I had no side effects from the medication. It reduced the GI inflammation, took away my symptoms and with the help of this forum and Enterolab, I started a diet that hopefully will keep the symptoms away!
Yes and No
Yes: If you have very low body weight, if you are on the verge of losing your job due to this disease, if you
are extremely weak now, if you are so weak you can't walk around a grocery store, if your job/family situation
are high stress right now. If you are too weak to cook.
No: I had good results with diet within 6-8 weeks. Diet alone (and meditation) I managed to get
to "soft serve" consistency. At that point I took budesonide because my friends and job kind of forced me to
(looking for a quick fix). Most folks do not have side effects. I found it to be a strong drug. In retrospect
I believe I could have done it with diet changes alone.
Yes: If you have very low body weight, if you are on the verge of losing your job due to this disease, if you
are extremely weak now, if you are so weak you can't walk around a grocery store, if your job/family situation
are high stress right now. If you are too weak to cook.
No: I had good results with diet within 6-8 weeks. Diet alone (and meditation) I managed to get
to "soft serve" consistency. At that point I took budesonide because my friends and job kind of forced me to
(looking for a quick fix). Most folks do not have side effects. I found it to be a strong drug. In retrospect
I believe I could have done it with diet changes alone.
Hello All,
Thank you for your imput! I have a follow up from colonoscopy, going to talk about options. I do want to try without meds, but need to understand some things. No matter what direction I go, there are going to be good and bad days depending on what you eat...
Thanks Selah
Thank you for your imput! I have a follow up from colonoscopy, going to talk about options. I do want to try without meds, but need to understand some things. No matter what direction I go, there are going to be good and bad days depending on what you eat...
Thanks Selah
Selah
Ulcerative Colitis since 2010, Just Diagnosed with
Lymphocyte Colitis totally puzzled!!
Ulcerative Colitis since 2010, Just Diagnosed with
Lymphocyte Colitis totally puzzled!!
Forgot to mention what I eat, GF, singular items, avocados, eggs (my girl's eggs) salt only seasoning. Drink coconut water or water, never pop or drinks. No sugar or breads, some meat like pork loin or chicken and small portions. Corn chips and cheese and grapes were my traveling meals. I might need to pare this down even more with this LC.
Only eat when in need of fuel, try not to eat a lot. Just so painful
Thanks again
Only eat when in need of fuel, try not to eat a lot. Just so painful
Thanks again
Selah
Ulcerative Colitis since 2010, Just Diagnosed with
Lymphocyte Colitis totally puzzled!!
Ulcerative Colitis since 2010, Just Diagnosed with
Lymphocyte Colitis totally puzzled!!
Most of us can't handle cheese, and at least half of us react to chicken eggs. Grapes can be a problem for many of us because of their fiber and their sorbitol content [we can't digest sorbitol (which is a sugar alcohol), so it tends to ferment in our colon, causing gas, bloating, and diarrhea].
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.