Hi! This board is amazing. Like a few others have said I am a bit overwhelmed with all of the information. I was diagnosed with MLC Monday - never heard of the disease until the he nurse called Monday with my colonoscopy biopsy results. She told me it came back with lymphocytic microscopic colitis, she was calling me in a prescription, it should alleviate my symptoms and I would see the doctor in 2 weeks. I have not spoken to the doctor yet about the disease state.
I have experienced symptoms daily since September 2016. Symptoms started after a course of antibiotics (Z-pack), but most of the physicians I have seen do not think the Z-pack caused this (although I was completely normal prior). Anyway, guess it does not really matter, here I am.
I am supposed to start Uceris today, 9 mg daily, and return to the GI in 2 weeks. I have not had a conversation with her about dietary changes yet; however, after reading many posts I do not have high expectations in this area. I do plan to start the Uceris, at least initially (I tend to be a very compliant patient, not that that is a good thing because I wish I would have passed on the Zpack.) I also currently take Synthroid (thyroidectomy years ago) and Calcium with Magnesium and Vit D (I was Vit D deficient on my labs in January).
My questions are as follows:
1. Do I start with dietary changes immediately or do I wait a week or two after starting Uceris, or wait until after seeing the GI?
2. Should I seek out a nutritionist and if so, what should I look for in a nutritionist?
3. Does anyone have experience with Uceris and synthroid? The pharmacist told me there should be no interaction, and I could take both in the morning.
4. Are any other supplements, like L-arginine, helpful? I do not take any supplements now, but this one has come up in my reading several times.
Again, thank all of you for creating and maintaining this site.
Angela
Diagnosed Monday and a couple of questions
Hi Angela:
Welcome to the family, sorry your a member now but these folks will help you. I was just diagnosed last year and so I'm still learning but I can give you some of your answers until one of the real gurus get online.
I would absolutely start diet changes. Your doctor will likely tell you that diet isn't going to help you. I believe what they should be telling you is they don't know how to guide you in that arena because there aren't enough published studies done on it. Personally I would not take any meds unless you aren't able to function without immediate relief. Do some learning before you start taking that. Just my two cents. I know nothing about it though. I'm kind of the opposite of a compliant patient at this point because I'm sick of people trying to treat symptoms instead of root cause.
Buy Wayne's book see the link in the upper right hand corner of the forum site. It will help, and read as much as you can on this forum.
Links that would be super handy to start with are in the "guidelines for recovery forum"
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
Start there and I'm sure somebody more knowledgable than I will chime in.
I wouldn't bother with a nutritionist at this point. Start with the info in the book and the forum, if you don't have proper healing then move on from there.
Again, welcome, sorry you're here. These people will help.
Welcome to the family, sorry your a member now but these folks will help you. I was just diagnosed last year and so I'm still learning but I can give you some of your answers until one of the real gurus get online.
I would absolutely start diet changes. Your doctor will likely tell you that diet isn't going to help you. I believe what they should be telling you is they don't know how to guide you in that arena because there aren't enough published studies done on it. Personally I would not take any meds unless you aren't able to function without immediate relief. Do some learning before you start taking that. Just my two cents. I know nothing about it though. I'm kind of the opposite of a compliant patient at this point because I'm sick of people trying to treat symptoms instead of root cause.
Buy Wayne's book see the link in the upper right hand corner of the forum site. It will help, and read as much as you can on this forum.
Links that would be super handy to start with are in the "guidelines for recovery forum"
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
Start there and I'm sure somebody more knowledgable than I will chime in.
I wouldn't bother with a nutritionist at this point. Start with the info in the book and the forum, if you don't have proper healing then move on from there.
Again, welcome, sorry you're here. These people will help.
-Kelly
I thank God that He led me to this forum and I thank Him for you.
Heart Palpitations 12/2013
Urticaria 2015
Symptoms for 5 years prior to 6/2016 diagnosis CD & LC
I thank God that He led me to this forum and I thank Him for you.
Heart Palpitations 12/2013
Urticaria 2015
Symptoms for 5 years prior to 6/2016 diagnosis CD & LC
Hello Angela,
Welcome aboard. Kelly has done a good job of answering most of your questions, so I'll only comment on a few other things.
Antibiotics are one of the most common causes of MC (LC or CC). I will agree with your doctors' thinking that Z-Pak is one of the least-likely antibiotics to cause LC. And if I definitely needed an antibiotic and azithromycin was indicated, I wouldn't hesitate to take it. However, only someone with an agenda would conclude that it was not the cause of your LC because all antibiotics can cause MC, none of them are exempt from the risk, unfortunately. Denying that a drug they prescribed caused an iatrogenic problem is a natural default response because no one wants to even think that a recommendation they made caused a serious medical problem for someone (let alone own up to it), especially someone who paid good money for that recommendation. But the timing is simply too correct to be a coincidence. And regarding being a compliant patient, I usually am, also. But please always use your best judgment when deciding whether or not to use any treatment, especially now that you have LC, because you are now more sensitive to many more medications than the average individual, and it's unlikely that any of your doctors realize that. In general, when selecting antibiotic treatments for example, we aren't able to actually choose the best one — instead, we have to choose the lessor of two or more evils.
In line with Kelly's comment that she would skip the Uceris, I have never taken a medication to treat MC symptoms either. However, if you prefer to take a medication to help stop the symptoms sooner (because it takes a while for the diet changes to heal the gut), Uceris is presumably the safest effective prescription medication currently available to treat MC. The other option worth considering is the Pepto-Bismol treatment (6–8 tablets per day for 8 weeks). However some people develop temporary side effects such as certain neurological issues so they cannot tolerate the Pepto treatment.
Corticosteroids actually retard healing, so if your symptoms are not severe, you would probably heal faster without the Uceris (as Kelly suggested), but if your symptoms are debilitating and you need to be able to go to work, then taking a medication can make life a lot more pleasant while the diet changes are working their magic.
I agree with Kelly's comments about consulting a nutritionist. They typically understand how to make diet recommendations for Crohn's or ulcerative colitis patients, but unfortunately those recommendations rarely work for MC patients. Because of the malabsorption problem caused by the inflammation associated with MC, our ability to absorb nutrients is significantly compromised anyway, so trying to balance nutrient intake during the recovery period is usually an exercise in futility. As your digestive system begins to heal, you will be able to absorb nutrients more normally and then it will be much easier to adjust your nutrition levels if needed. Most people are surprised to find that the limited diet needed to heal the gut typically supplies adequate or better nutrition.
Corticosteroids can affect thyroid functioning, but as far as I am aware they have no significant effect on either thyroxine or synthroid products.
In general, less is more when recovering from MC, meaning that the less variety in our diet and the less supplements we take, the more likely we are to recover, and the faster we are likely to recover. That said, vitamin D is extremely critical for the proper functioning of the immune system, and the immune system is in charge of all healing processes. Getting our Vitamin D level up into the 40–60 ng/mL range as quickly as possible should significantly improve the healing process.
For example, taking calcium has no benefit when vitamin D is deficient, because calcium cannot be absorbed into the bloodstream without sufficient vitamin D. Once calcium is in the blood, then adequate magnesium is necessary to get it out of the blood and into bone and other tissues where it is needed. Most people have more than enough calcium in their diet, so they don't need a calcium supplement. They need vitamin D so that they can absorb the calcium, and magnesium so that they can use the calcium to build bone tissue.
I hope that some of this is helpful. Again ,welcome aboard, and please feel free to ask anything.
Tex
Welcome aboard. Kelly has done a good job of answering most of your questions, so I'll only comment on a few other things.
Antibiotics are one of the most common causes of MC (LC or CC). I will agree with your doctors' thinking that Z-Pak is one of the least-likely antibiotics to cause LC. And if I definitely needed an antibiotic and azithromycin was indicated, I wouldn't hesitate to take it. However, only someone with an agenda would conclude that it was not the cause of your LC because all antibiotics can cause MC, none of them are exempt from the risk, unfortunately. Denying that a drug they prescribed caused an iatrogenic problem is a natural default response because no one wants to even think that a recommendation they made caused a serious medical problem for someone (let alone own up to it), especially someone who paid good money for that recommendation. But the timing is simply too correct to be a coincidence. And regarding being a compliant patient, I usually am, also. But please always use your best judgment when deciding whether or not to use any treatment, especially now that you have LC, because you are now more sensitive to many more medications than the average individual, and it's unlikely that any of your doctors realize that. In general, when selecting antibiotic treatments for example, we aren't able to actually choose the best one — instead, we have to choose the lessor of two or more evils.
In line with Kelly's comment that she would skip the Uceris, I have never taken a medication to treat MC symptoms either. However, if you prefer to take a medication to help stop the symptoms sooner (because it takes a while for the diet changes to heal the gut), Uceris is presumably the safest effective prescription medication currently available to treat MC. The other option worth considering is the Pepto-Bismol treatment (6–8 tablets per day for 8 weeks). However some people develop temporary side effects such as certain neurological issues so they cannot tolerate the Pepto treatment.
Corticosteroids actually retard healing, so if your symptoms are not severe, you would probably heal faster without the Uceris (as Kelly suggested), but if your symptoms are debilitating and you need to be able to go to work, then taking a medication can make life a lot more pleasant while the diet changes are working their magic.
I agree with Kelly's comments about consulting a nutritionist. They typically understand how to make diet recommendations for Crohn's or ulcerative colitis patients, but unfortunately those recommendations rarely work for MC patients. Because of the malabsorption problem caused by the inflammation associated with MC, our ability to absorb nutrients is significantly compromised anyway, so trying to balance nutrient intake during the recovery period is usually an exercise in futility. As your digestive system begins to heal, you will be able to absorb nutrients more normally and then it will be much easier to adjust your nutrition levels if needed. Most people are surprised to find that the limited diet needed to heal the gut typically supplies adequate or better nutrition.
Corticosteroids can affect thyroid functioning, but as far as I am aware they have no significant effect on either thyroxine or synthroid products.
In general, less is more when recovering from MC, meaning that the less variety in our diet and the less supplements we take, the more likely we are to recover, and the faster we are likely to recover. That said, vitamin D is extremely critical for the proper functioning of the immune system, and the immune system is in charge of all healing processes. Getting our Vitamin D level up into the 40–60 ng/mL range as quickly as possible should significantly improve the healing process.
For example, taking calcium has no benefit when vitamin D is deficient, because calcium cannot be absorbed into the bloodstream without sufficient vitamin D. Once calcium is in the blood, then adequate magnesium is necessary to get it out of the blood and into bone and other tissues where it is needed. Most people have more than enough calcium in their diet, so they don't need a calcium supplement. They need vitamin D so that they can absorb the calcium, and magnesium so that they can use the calcium to build bone tissue.
I hope that some of this is helpful. 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.
Welcome Angela,
You appear to be a bit overwhelmed with your diagnosis....I'm truly sorry you have the Dx as many of us have now too.
It is a life long diagnosis, and we do get our lives back, maybe not in the exact way we once were but well enough that life is good.
You seem very much up for the important changes that are ahead, and I know you can do this
There is lots to read (The Sticky Notes at the Main Message Board are a good starting place along with Success Stories), grasp, understand and experiment with while healing. Ask lots of questions....there are many people willing to help here.
I am one who did not partake in the medication side of healing while eliminating foods and revamping my diet. I suppose I wanted to know right away if something was a problem for me and medication had the potential to mask that aspect for me, but if you need the extra support I'd do it there are just some rules to follow while doing it. I also had to go thru a grieving process, but that's just me I am not sure how many others had to experience that too.
Glad you found us
Cheers
Erica
You appear to be a bit overwhelmed with your diagnosis....I'm truly sorry you have the Dx as many of us have now too.
It is a life long diagnosis, and we do get our lives back, maybe not in the exact way we once were but well enough that life is good.
You seem very much up for the important changes that are ahead, and I know you can do this
There is lots to read (The Sticky Notes at the Main Message Board are a good starting place along with Success Stories), grasp, understand and experiment with while healing. Ask lots of questions....there are many people willing to help here.
I am one who did not partake in the medication side of healing while eliminating foods and revamping my diet. I suppose I wanted to know right away if something was a problem for me and medication had the potential to mask that aspect for me, but if you need the extra support I'd do it there are just some rules to follow while doing it. I also had to go thru a grieving process, but that's just me I am not sure how many others had to experience that too.
Glad you found us
Cheers
Erica
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
Thank all of you for your replies. Truly, thank you. I have decided to delay starting Uceris, and to understand the disease state better and figure out the diet first. I know I need to realize this is a process and that is going to take some time - no need to jump to quickly in regards to medication. There will be plenty of time for that, if I end up going that route. I will definitely spend time reading through these boards and getting Wayne's book. Thank you all, again, for your responses.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8334
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
welcome to the group
and to expand on what has been suggested above - the main thing is to keep in mind is that MC is different for everyone, some get good management of symptoms with diet only, some use medication with diet. Do what works best for you.
take your time digesting (pun intended) the discussions in the various topic boards and ask questions. Don't get overwhelmed by all that you read.
happy healing
and to expand on what has been suggested above - the main thing is to keep in mind is that MC is different for everyone, some get good management of symptoms with diet only, some use medication with diet. Do what works best for you.
take your time digesting (pun intended) the discussions in the various topic boards and ask questions. Don't get overwhelmed by all that you read.
happy healing
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama