Hi Donna,
Ironically my brand new ObGyn (who is young and delightfully willing to help me) she drew up these requested labs for me, and I had my blood drawn practically in the same building as my well being visit.
It was mostly done locally, with a couple labs sent to Spokane, WA.
E
Need Input that I'm not going to get from Dr.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Just wanted to put an update in here that I started Re-Mag a liquid magnesium https://www.rnareset.com/products/remag ... 3899661319 a week ago. Seems my body is responding to it in a good way, perhaps absorbing it better than I expected. Hoping this is a turn around moment for the WD that has been hit or miss with my body since March-ish. Also taking 10,000 iu VitD3 at this time until this Fall sometime where I will retest as Winter may not be a good time to back off.
I notice I eat less chicken these days and have concentrated on cornish hen, pork chops and natural safe turkey or ham deli meats, with good servings of red or yellow potatoes flavored with sea salt or Coconut aminos (for any newbie reading they look like this https://www.coconutsecret.com/aminos2.html )
I don't eat as much chocolate but I do enjoy this rice milk ice cream occasionally http://www.dreamplantbased.com/product/ ... m-vanilla/
Sea salt with iodine is my go-to spice always.
I notice I eat less chicken these days and have concentrated on cornish hen, pork chops and natural safe turkey or ham deli meats, with good servings of red or yellow potatoes flavored with sea salt or Coconut aminos (for any newbie reading they look like this https://www.coconutsecret.com/aminos2.html )
I don't eat as much chocolate but I do enjoy this rice milk ice cream occasionally http://www.dreamplantbased.com/product/ ... m-vanilla/
Sea salt with iodine is my go-to spice always.
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
-
Jumpindogs
- Adélie Penguin
- Posts: 129
- Joined: Thu May 12, 2016 9:41 pm
- Location: Wisconsin
Hey EricaErica P-G wrote:Just wanted to put an update in here that I started Re-Mag a liquid magnesium https://www.rnareset.com/products/remag ... 3899661319 a week ago. Seems my body is responding to it in a good way, perhaps absorbing it better than I expected. Hoping this is a turn around moment for the WD that has been hit or miss with my body since March-ish. Also taking 10,000 iu VitD3 at this time until this Fall sometime where I will retest as Winter may not be a good time to back off.
I notice I eat less chicken these days and have concentrated on cornish hen, pork chops and natural safe turkey or ham deli meats, with good servings of red or yellow potatoes flavored with sea salt or Coconut aminos (for any newbie reading they look like this https://www.coconutsecret.com/aminos2.html )
I don't eat as much chocolate but I do enjoy this rice milk ice cream occasionally http://www.dreamplantbased.com/product/ ... m-vanilla/
Sea salt with iodine is my go-to spice always.
Love the Coconut Secret website...thanks for posting that link! Will be stopping at my local health food store to look for their coconut aminos. And looking forward to trying their Classic Coconut Bars once I get to the point of being able to try stuff.
Joanne and the Recycled Aussies
LC May 2016
LC May 2016
Totally overwhelmed
Hi everyone. I am very overwhelmed with all of this.I am not even sure how to post a new question on this site let alone how to understand all the information that I have been reading. I have figured out that I should go on a gf, df, and soy free diet.( I've done this as a week ago.) I have also added the vitamin d and magnesium. Still I feel awful! I read this can take years to start to help. I want to cry and don't know how I will do this. I have super low energy and a daily headache that occasionally works itself into a migraine. I am feeling like i am stuck in a pity party for myself. My boyfriend does not understand at all and basically said I was no longer any fun since I can't enjoy eating out and drinking. Of course, he understandably doesn't like that I feel sick all the time either. He canceled our trip to Italy as he said that I would not be any fun. I guess he is right about that but it still hurt to realize that I now have a illness that will be isolating me from others and doing all the things I've looked forward to. I'm feeling extremely lonely and sad.
None of the medications ( entocort and Lialda) that I have been put on the past 9months have stopped the D. Imodium and lomotil work to stop it at least while I'm taking it. I don't know it I can just continue to take those medicines around the clock or will I create more of a health mess? I know it seems explosive when my diarrhea breaks through after taking them any suggestions on how to take them? Maybe I'm lucky they work but it seems strange to me to take them none stop. How often do others use these? Also the headaches and fatigue keep getting worse. My doctors said this was inconsequential disease. They must be living on another planet!
Thanks
O
None of the medications ( entocort and Lialda) that I have been put on the past 9months have stopped the D. Imodium and lomotil work to stop it at least while I'm taking it. I don't know it I can just continue to take those medicines around the clock or will I create more of a health mess? I know it seems explosive when my diarrhea breaks through after taking them any suggestions on how to take them? Maybe I'm lucky they work but it seems strange to me to take them none stop. How often do others use these? Also the headaches and fatigue keep getting worse. My doctors said this was inconsequential disease. They must be living on another planet!
Thanks
O
Hello O,
Welcome to our Internet family. Your description of how you feel sounds like me 16 years ago. Yes, it's just a nuisance disease to many GI specialists, mostly because they don't understand the disease and they don't have it. If they had the disease, they would respect it enough to learn all they could discover about it, so that they could get out of their bathroom and go back to work again.
The symptoms of the disease and the life-altering effects it has on our lifestyles tends to be very depressing. And to add insult to injury, it causes magnesium deficiency and vitamin D deficiency, and both of those deficiencies interfere with healing and magnesium deficiency virtually guarantee depression and associated mood issues. Those deficiencies and the stress caused by the symptoms and the deficiencies makes MC a self-perpetuating disease.
Yes, it can take years to completely recover from the disease, but if you stick with a safe diet, you will see significant improvement within a matter of weeks or months. We all respond to treatment differently, so it's impossible to predict how long it will take, but you surely will not have to wait for years in order to see major improvements from diet changes you make to avoid the foods that are causing your symptoms.
Imodium is generally safe to take as needed at up to 8 tablets per day. Most members here use it as insurance on days when they have to go somewhere, or attend a meeting, or some other situation where they may not have immediate access to a bathroom. It's not a first line of treatment — it's a supplement for bad days. Our first line of treatment is diet changes to eliminate the foods from our diet that are causing our symptoms. Once we figure out which foods are causing our symptoms, and eliminate all of them from our diet (100 %), our digestive system can heal and our symptoms will fade away. And those symptoms will stay away as long as we are faithful to our diet and avoid major chronic stress. Unfortunately, serious chronic stress can trump the best of intentions and trigger a flare. Because of that, many members here follow good stress reduction practices, as needed.
Again, welcome to the board, and please feel free to ask anything.
Tex
P.S. To start a new topic, just click on the "New topic" button above the upper left-hand corner of this thread.
Welcome to our Internet family. Your description of how you feel sounds like me 16 years ago. Yes, it's just a nuisance disease to many GI specialists, mostly because they don't understand the disease and they don't have it. If they had the disease, they would respect it enough to learn all they could discover about it, so that they could get out of their bathroom and go back to work again.
The symptoms of the disease and the life-altering effects it has on our lifestyles tends to be very depressing. And to add insult to injury, it causes magnesium deficiency and vitamin D deficiency, and both of those deficiencies interfere with healing and magnesium deficiency virtually guarantee depression and associated mood issues. Those deficiencies and the stress caused by the symptoms and the deficiencies makes MC a self-perpetuating disease.
Yes, it can take years to completely recover from the disease, but if you stick with a safe diet, you will see significant improvement within a matter of weeks or months. We all respond to treatment differently, so it's impossible to predict how long it will take, but you surely will not have to wait for years in order to see major improvements from diet changes you make to avoid the foods that are causing your symptoms.
Imodium is generally safe to take as needed at up to 8 tablets per day. Most members here use it as insurance on days when they have to go somewhere, or attend a meeting, or some other situation where they may not have immediate access to a bathroom. It's not a first line of treatment — it's a supplement for bad days. Our first line of treatment is diet changes to eliminate the foods from our diet that are causing our symptoms. Once we figure out which foods are causing our symptoms, and eliminate all of them from our diet (100 %), our digestive system can heal and our symptoms will fade away. And those symptoms will stay away as long as we are faithful to our diet and avoid major chronic stress. Unfortunately, serious chronic stress can trump the best of intentions and trigger a flare. Because of that, many members here follow good stress reduction practices, as needed.
Again, welcome to the board, and please feel free to ask anything.
Tex
P.S. To start a new topic, just click on the "New topic" button above the upper left-hand corner of this thread.
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.
None of us have enjoyed the drastic diet changes that we've had to make, but we're much healthier for doing it, and life is sooooooooooo much better when we're no longer chained to the bathroom.
You're very welcome,
Tex
You're very welcome,
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
O
welcome!
to start a post, within the main message board, just above the posts there is a button "NEW TOPIC"
write the post and then press the Submit button.
sorry you have had tough time with making the eating adjustments, and the response from your boyfriend.
healing and expanding the eating plan does not take years for everybody. there are a few factors regarding the time it takes, age, other health issues, lifestyle situations (ie ongoing stress can be a big trigger for some)
there are many here that once symptoms have settled they have been able to travel, domestically and internationally. With a bit of pre-planning the trip is very possible.
hang in there with the eating plan changes, the Vit D and the magensium. Take a few deep breaths.
take it a day at a time. you are allowed to put your needs first, guilt free.
keep doing some reading and feel reassurance that you have found people that 'get it' that can help you get your life back
take care
happy healing
welcome!
to start a post, within the main message board, just above the posts there is a button "NEW TOPIC"
write the post and then press the Submit button.
sorry you have had tough time with making the eating adjustments, and the response from your boyfriend.
healing and expanding the eating plan does not take years for everybody. there are a few factors regarding the time it takes, age, other health issues, lifestyle situations (ie ongoing stress can be a big trigger for some)
there are many here that once symptoms have settled they have been able to travel, domestically and internationally. With a bit of pre-planning the trip is very possible.
hang in there with the eating plan changes, the Vit D and the magensium. Take a few deep breaths.
take it a day at a time. you are allowed to put your needs first, guilt free.
keep doing some reading and feel reassurance that you have found people that 'get it' that can help you get your life back
take care
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
I felt an update to this post was necessary at this time....
Relationships can be hindered without knowing it when we immerse ourselves into MC world to far.
I have just gone thru an awakening with my spouse that I did not realize was happening and it could have been almost to late to save our marriage had I not noticed how estranged my spouse was becoming. Luckily I am one that once I notice something I will go the ends of the earth to figure it out and try to fix it, and thankfully my spouse noticed my 180 turn around and he is much more receiving and feeling better. Communication is SUPER IMPORTANT...I can't stress this enough and apparently the hints my spouse thought he was giving me were not enough to get it across to me that I was over doing the colitis gig.
I am sharing this because I know there will be those out there that start on this MC journey and become one with it to the point that we may or may not realize just how removing we can become from those that love us the most and want to be there for us but they can only handle so much Potty Talk and Healing Talk and if anyone begins to feel that their world revolves around what they did that day, or how they feel at the moment and this becomes a habit conversation daily then you have gone to far and it has the potential to push people away instead of them embracing you. Which I realize that is all that we really want is hugs and help and conversation.
I'm not proud I let myself get so immersed...this is a learning moment for me moving forward now. This has weighed heavy on my heart and the only place I felt I could let my words out were on this post. Don't get me wrong, my spouse reassured me that he wants to know of changes, or needs just not on a constant daily basis, and I get that now
I can say I know just enough to be dangerous with my information.....beware those that come to me and ask any questions about my syndrome and how I take care of it
I may just overwhelm them with my information.
Thanks for letting me put myself out there....putting words to screen has helped alot.
Erica
Relationships can be hindered without knowing it when we immerse ourselves into MC world to far.
I have just gone thru an awakening with my spouse that I did not realize was happening and it could have been almost to late to save our marriage had I not noticed how estranged my spouse was becoming. Luckily I am one that once I notice something I will go the ends of the earth to figure it out and try to fix it, and thankfully my spouse noticed my 180 turn around and he is much more receiving and feeling better. Communication is SUPER IMPORTANT...I can't stress this enough and apparently the hints my spouse thought he was giving me were not enough to get it across to me that I was over doing the colitis gig.
I am sharing this because I know there will be those out there that start on this MC journey and become one with it to the point that we may or may not realize just how removing we can become from those that love us the most and want to be there for us but they can only handle so much Potty Talk and Healing Talk and if anyone begins to feel that their world revolves around what they did that day, or how they feel at the moment and this becomes a habit conversation daily then you have gone to far and it has the potential to push people away instead of them embracing you. Which I realize that is all that we really want is hugs and help and conversation.
I'm not proud I let myself get so immersed...this is a learning moment for me moving forward now. This has weighed heavy on my heart and the only place I felt I could let my words out were on this post. Don't get me wrong, my spouse reassured me that he wants to know of changes, or needs just not on a constant daily basis, and I get that now
I can say I know just enough to be dangerous with my information.....beware those that come to me and ask any questions about my syndrome and how I take care of it
I may just overwhelm them with my information.Thanks for letting me put myself out there....putting words to screen has helped alot.
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
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Big Hugs Erica
There are days that living alone is tough and sometimes i am envious of those with partners and family that are there to help them
and there are days that I value it is just me, as my wellness journey has been easier compare to others because it is 'just me'
my analogy of Alice in wonderland applies here hey... after being in wonderland how do you integrate back into the 'real world'
keep the connections with partners, family who are not part of 'MC world'
dont be hard on yourself for 'becoming immersed' you were enthused by knowledge and encouraged by this to improve your wellness.
the hard part of any journey is going at the pace that allows progress but not so much that we leave important co-travellers behind...
There are days that living alone is tough and sometimes i am envious of those with partners and family that are there to help them
and there are days that I value it is just me, as my wellness journey has been easier compare to others because it is 'just me'
my analogy of Alice in wonderland applies here hey... after being in wonderland how do you integrate back into the 'real world'
keep the connections with partners, family who are not part of 'MC world'
dont be hard on yourself for 'becoming immersed' you were enthused by knowledge and encouraged by this to improve your wellness.
the hard part of any journey is going at the pace that allows progress but not so much that we leave important co-travellers behind...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I guess I'm the total opposite..........rather than talking about it, I tend to not talk about it at all or enough and sometimes that can create the same effect as talking about it too much. But don't be so hard on yourself. It's new to us and we are just trying to find out all we can find out. It is a total lifestyle change, that's for sure.
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Erica, I Was so touched by Your post. I live with my sister who has had to endure my journey and I understand your wanting to share your thoughts and learnings with the one who is there with you during this really scary and awful time. I have tried real hard to rein in my comments during our afternoon chats and wait until she asks questions about the latest updates, but sometimes I just need to blurt everything out. Hang in there! You are okay.
Laura
Laura
Thank you, Gabes, Jari, & Laura....
I've had to do a 180 regarding this experience... my family will no longer have to endure my talking about this issue about myself as I have decided it will take on a silent aspect. I hope if they really want to know how I am doing they will ask, otherwise I no longer feel compelled to feel bad if I am unable to eat with my family during get togethers and they feel bad for not taking me into consideration. I will be sure to accommodate myself and let it go at that
I love you all for your understanding, and as I have said many times...so very thankful to be a part of this community.
Erica
I've had to do a 180 regarding this experience... my family will no longer have to endure my talking about this issue about myself as I have decided it will take on a silent aspect. I hope if they really want to know how I am doing they will ask, otherwise I no longer feel compelled to feel bad if I am unable to eat with my family during get togethers and they feel bad for not taking me into consideration. I will be sure to accommodate myself and let it go at that
I love you all for your understanding, and as I have said many times...so very thankful to be a part of this community.
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
Oh Erica,
Thanks for posting this. I have the same issue with my hubby and I know I've been talking about it waaaay too much for the past 3 years! It definitely impacts a marriage when traveling worry free and eating out is a thing of the past. I also know our words have tremendous power so when I feel I need to "talk" writing in a journal has really helped with this. I jot down things before I go to sleep so I don't spend the night worrying about them.
I will now concentrate on words such as "I am whole, healthy, and happy"
Come talk with us anytime!
Thanks for posting this. I have the same issue with my hubby and I know I've been talking about it waaaay too much for the past 3 years! It definitely impacts a marriage when traveling worry free and eating out is a thing of the past. I also know our words have tremendous power so when I feel I need to "talk" writing in a journal has really helped with this. I jot down things before I go to sleep so I don't spend the night worrying about them.
I will now concentrate on words such as "I am whole, healthy, and happy"
Come talk with us anytime!
Vanessa
Hi...
It's been a while since I have written.....I have been restructuring my life (in a good way).
Marriage is in much better shape, attitude has gone from a pity pot depressed self centering aspect of someone I didn't know I could be, into a blossoming living giving person to my husband and family that I used to be
I have to give credit to the fact that the Cholestyramine is really working for me...keeping that little extra bile from getting into the Large intestine has really made a huge difference in my life. I find I don't worry about the bathroom anymore
I also have come to realize that I have a new normal when it comes to bathroom trips....just because my BM isn't a 'good size, solid and firm' doesn't mean that I am not taking care of business and carrying on with life. I am not in pain, no gas, no rumbling, just normal morning and afternoon trips to the restroom.
It sounds crazy but with the mental help I have gotten from taking the Cholestyramine which in turn has kept my insides from reacting unnecessarily I find I am doing more things and not worrying about where I am doing them or how I am doing them. A tiny part of my perfect self has emerged and it has been a rather healing experience for me. My family has noticed, my husband is closer to me than I have felt in a long time and I am not constantly reminded that I have a health problem.
I recently tested myself to see what it felt like if I purposely ate a little glutened pizza home made...and I learned that I get an itchy neck, and my knee joints will ache, and I think I spur a bit of a head ache although it is not a migraine. So now I have a baseline for myself and can tell when I have gotten into something that will really upset me if I continue to keep doing it.
I also had a small glass of Pinot Gris wine over the weekend....that will be a sometimes thing as I didn't have any immediate reaction but I'm sure the sugar isn't good for me either. I've noticed I don't crave sugar anymore, and I can tolerate it to a degree but don't really need it.
I still eat basic items flavored with aminos or salt or my new favorite Veganaise and numerous helpings of proteins. I don't focus on food as much anymore either...I'm maintaining weight so there is no point in fussing over something that doesn't need fussing.
Work has gotten super busy so I will visit off an on, and provide insight as often as I can. I appreciate too many people here to not visit
Love
Erica
It's been a while since I have written.....I have been restructuring my life (in a good way).
Marriage is in much better shape, attitude has gone from a pity pot depressed self centering aspect of someone I didn't know I could be, into a blossoming living giving person to my husband and family that I used to be
I have to give credit to the fact that the Cholestyramine is really working for me...keeping that little extra bile from getting into the Large intestine has really made a huge difference in my life. I find I don't worry about the bathroom anymore
I also have come to realize that I have a new normal when it comes to bathroom trips....just because my BM isn't a 'good size, solid and firm' doesn't mean that I am not taking care of business and carrying on with life. I am not in pain, no gas, no rumbling, just normal morning and afternoon trips to the restroom.
It sounds crazy but with the mental help I have gotten from taking the Cholestyramine which in turn has kept my insides from reacting unnecessarily I find I am doing more things and not worrying about where I am doing them or how I am doing them. A tiny part of my perfect self has emerged and it has been a rather healing experience for me. My family has noticed, my husband is closer to me than I have felt in a long time and I am not constantly reminded that I have a health problem.
I recently tested myself to see what it felt like if I purposely ate a little glutened pizza home made...and I learned that I get an itchy neck, and my knee joints will ache, and I think I spur a bit of a head ache although it is not a migraine. So now I have a baseline for myself and can tell when I have gotten into something that will really upset me if I continue to keep doing it.
I also had a small glass of Pinot Gris wine over the weekend....that will be a sometimes thing as I didn't have any immediate reaction but I'm sure the sugar isn't good for me either. I've noticed I don't crave sugar anymore, and I can tolerate it to a degree but don't really need it.
I still eat basic items flavored with aminos or salt or my new favorite Veganaise
and numerous helpings of proteins. I don't focus on food as much anymore either...I'm maintaining weight so there is no point in fussing over something that doesn't need fussing.Work has gotten super busy so I will visit off an on, and provide insight as often as I can. I appreciate too many people here to not visit
Love
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