Hey Guys
Maybe I jumped the gun on things. Seem to be in a backward slide lately. Slowly increasing the ReMag which seems to be ok..still slathering myself with mag oil and lotion...Sleep has been some better but still not great or what I need I don't think.
Tried adding salmon last week. Not good. So just eating tons of turkey and lamb, not even sure the antelope is ok. Will try elk again this weekend. Have no grains at all (rice is out Gabes as it was 3+ on my enterolab test in August and I also react to nightshades.). Have tried sunflower butter and coconut butter to get some calories and fat in my life...??unsure about those as no real immediate reaction to them like the salmon did. Lamb bone broth and a banana,
cup of applesauce (just water and apples) a day. Occasional cup of canned pears/peaches. Overcooked green/yellow zucchini/butternut squash/carrots.
Occasional overcooked sweet potatoes and canned green beans. Avacado/sweet potato or root chips. Water or decaf tea/peppermint tea.
Taking cholestryamine which I think is holding this ship together. I was running constipated (which I hadn't been in YEARS) for January but now I seem to
have looser stuff on occasion and or the formed but poofy poop. Don't feel as bloated but still rumbly at times.
And the new stressor is the guy I've been seeing for months just broke up with me last night. Granted, he lives in another state but he has been a HUGE support during the past 9 months with the death of my husband and just life in general (there's alot more to that also kids). Got not alot of sleep last night as I now feel adrift on so many levels.
Am I going in the right direction here people?? I am functional, go to work every day. Am I hoping for change too quickly?? Cancelled that colonoscopy that I was supposed to have 1/31 due to not feeling well....and it probably wouldn't have happened due to the heart rate thing which is slowly getting better. Still have the heart monitor for 2.5 more weeks..
Laine
Need to vent
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Oh, and I started taking the A, K and E supplements again as I am getting bruises on my thighs from what I assume is bumping into things at work. Not big ones, just dime sized stuff which I assume is due to cholestyramine usage. Even at baseline I'm an easy bruiser. Having bruises like this isn't unusual, but having so many is...just noticed this. So is this an issue?? Really just started these again 2-3 days ago.
And I took a B Complex tablet for years but stopped that a few months ago when this went bad. What and how much of B vitamins do I need, B6, B12???
Need a hug but don't have my sweet man around to do it for me anymore!! He really is a sweet guy that I still love very much but just think the distance
and my health issues didn't help anything. I will miss him more as a best friend/suppport more than anything.
Lainie
And I took a B Complex tablet for years but stopped that a few months ago when this went bad. What and how much of B vitamins do I need, B6, B12???
Need a hug but don't have my sweet man around to do it for me anymore!! He really is a sweet guy that I still love very much but just think the distance
and my health issues didn't help anything. I will miss him more as a best friend/suppport more than anything.
Lainie
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Lainie,
Tough cases tend to be . . . well . . . tough to resolve. You have had to deal with so many major, unanticipated, and extremely stressful events that it's not surprising that remission would be elusive, despite all your dedicated hard work.
I believe you're on the right track and you mostly need more time for the effects of stress to fade away so that your body can heal faster. I'm so sorry that you're now facing a new source of stress. That breakup certainly won't help, and the timing is also bad, but we have little choice but to play the hand we're dealt.
Looking forward, it's generally true that when one door closes, another one opens for us, sometimes in an unexpected direction. Hopefully that door will open for you sooner rather than later, so that you won't feel adrift for long.
Part of your digestive problems may well be associated with inadequate sleep. Have you tried taking Benedryl at bedtime? Many members here have found it to be very helpful for getting to sleep and staying asleep. And the antihistamine effects may help to suppress the inflammation in your digestive system.
Melatonin is another option because it's generally regarded as helpful not only for relaxing, but also for suppressing inflammation. However, there's some evidence that it may have the opposite effect (may increase inflammation) for certain autoimmune diseases, such as rheumatoid arthritis, so it's use is somewhat controversial.
I hope that you'll be feeling better by the end of the day.
Tex
Tough cases tend to be . . . well . . . tough to resolve. You have had to deal with so many major, unanticipated, and extremely stressful events that it's not surprising that remission would be elusive, despite all your dedicated hard work.
I believe you're on the right track and you mostly need more time for the effects of stress to fade away so that your body can heal faster. I'm so sorry that you're now facing a new source of stress. That breakup certainly won't help, and the timing is also bad, but we have little choice but to play the hand we're dealt.
Looking forward, it's generally true that when one door closes, another one opens for us, sometimes in an unexpected direction. Hopefully that door will open for you sooner rather than later, so that you won't feel adrift for long.
Part of your digestive problems may well be associated with inadequate sleep. Have you tried taking Benedryl at bedtime? Many members here have found it to be very helpful for getting to sleep and staying asleep. And the antihistamine effects may help to suppress the inflammation in your digestive system.
Melatonin is another option because it's generally regarded as helpful not only for relaxing, but also for suppressing inflammation. However, there's some evidence that it may have the opposite effect (may increase inflammation) for certain autoimmune diseases, such as rheumatoid arthritis, so it's use is somewhat controversial.
I hope that you'll be feeling better by the end of the day.
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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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Laine
as Tex said, you are on the right track
given the months of various stresses, and the current stress with the relationship change, it will take a couple of months of supplements for bigger improvements to come.
4-6 weeks minimum, 8-12 weeks on average. You are 2-3 weeks into the process...
for now try to relax, have faith that you are doing the right things and incorporate some relaxation activities into the routine, especially after work/before bed and this will also help improve sleep quality.
Sleep and relaxation is just as important as the diet and the supplements...
if you need additional info on things you can do to improve sleep quality, let me know and I will post some links.
as Tex said, you are on the right track
given the months of various stresses, and the current stress with the relationship change, it will take a couple of months of supplements for bigger improvements to come.
4-6 weeks minimum, 8-12 weeks on average. You are 2-3 weeks into the process...
for now try to relax, have faith that you are doing the right things and incorporate some relaxation activities into the routine, especially after work/before bed and this will also help improve sleep quality.
Sleep and relaxation is just as important as the diet and the supplements...
if you need additional info on things you can do to improve sleep quality, let me know and I will post some links.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks all!!!
I just want life to return to some sort of normalcy! Like I said, I am going in the right direction, just have basically been in a flare for a year and want to get on with life. It's hard to do anything with anyone when you don't feel well. Not sure why my sweetie even dealt with me this long, bless him!! We've been friends for 34 years, so no hard feelings, will still be great friends but it's now hard to not have someone whom you feel is your rudder..
Like I said, I started the fat soluble vitamins again and sort of looked at the Vitamin K bottle last night and noticed it is derived from soy and has rice flour in it
Ok, will be going to Vitamin Cottage today to look for one without those ingredients. I ordered the Drs Best Magnesium glycinate and got that yesterday so I think I will try 1 tablet with lunch today (4 hours after Cholestramine), taking about 3/4 t of the ReMag a day worked around the Cholesytramine. And still doing the mag oil spray/lotion. Pills say to take with meals...Tex?? I can do this easily at lunch due to 4 hours out but that is hard with dinner. Ok to just take prior to bed, which wouldn't be with a meal? I can try and fiddle with all this stuff to get the magnesium in me...oil spray gets old as I'm sort of tired of being caked with wierd white residue afterwards..I know you can shower this off but that doesn't work with my timeline in the am.
And is the B complex ok??? Dont see anything listed in the ingredients that looks suspect...or do I just need B6/B12??
Laine
I just want life to return to some sort of normalcy! Like I said, I am going in the right direction, just have basically been in a flare for a year and want to get on with life. It's hard to do anything with anyone when you don't feel well. Not sure why my sweetie even dealt with me this long, bless him!! We've been friends for 34 years, so no hard feelings, will still be great friends but it's now hard to not have someone whom you feel is your rudder..
Like I said, I started the fat soluble vitamins again and sort of looked at the Vitamin K bottle last night and noticed it is derived from soy and has rice flour in it
Ok, will be going to Vitamin Cottage today to look for one without those ingredients. I ordered the Drs Best Magnesium glycinate and got that yesterday so I think I will try 1 tablet with lunch today (4 hours after Cholestramine), taking about 3/4 t of the ReMag a day worked around the Cholesytramine. And still doing the mag oil spray/lotion. Pills say to take with meals...Tex?? I can do this easily at lunch due to 4 hours out but that is hard with dinner. Ok to just take prior to bed, which wouldn't be with a meal? I can try and fiddle with all this stuff to get the magnesium in me...oil spray gets old as I'm sort of tired of being caked with wierd white residue afterwards..I know you can shower this off but that doesn't work with my timeline in the am.And is the B complex ok??? Dont see anything listed in the ingredients that looks suspect...or do I just need B6/B12??
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Laine,
Sorry, I missed your post about bruising. A vitamin K deficiency can cause that symptom, but that's somewhat rare. If it's being caused by the cholestyramine, that's listed as a rare but serious side effect. Budesonide is notorious for causing thin skin and easy bruising. I recall that back when my magnesium deficiency became critical, one of the symptoms that I can now see in retrospect is easy bruising. Like budesonide, magnesium deficiency causes thinning of the skin. In your case it could certainly be due to a combination of various causes.
Ideally, it's probably best to take magnesium with meals, because that dilutes the dose and probably enhances absorption (since the digestive system expects to get magnesium from food). But if I forget to take enough magnesium during the day, or feel that I need more, I often take a tablet at bedtime with no ill results. And I believe that other members here do that also. I wouldn't overdo that though (with higher doses), because without the dilution allowed by food, most of a concentrated higher dose is likely to be wasted, anyway. A little snack could easily change that, of course. Topical applications work fine at any time, but I hear you — I only use magnesium oil about 20 minutes or so before a shower.
A safe B complex should be OK. To minimize the risk, most of us either skip them altogether until after we are in remission, or we take only B-12 (preferably the active form, methylcobalamin) and folic acid (preferably the active form, methylfolate), if we feel that we are having the symptoms of vitamin B-12 deficiency.
Your friend/sweetheart must be a super guy for you to still think so highly of him after a breakup. Kudos to him. He will be tough to replace, but your memories of him can still provide support for you in the window of your mind.
Tex
Sorry, I missed your post about bruising. A vitamin K deficiency can cause that symptom, but that's somewhat rare. If it's being caused by the cholestyramine, that's listed as a rare but serious side effect. Budesonide is notorious for causing thin skin and easy bruising. I recall that back when my magnesium deficiency became critical, one of the symptoms that I can now see in retrospect is easy bruising. Like budesonide, magnesium deficiency causes thinning of the skin. In your case it could certainly be due to a combination of various causes.
Ideally, it's probably best to take magnesium with meals, because that dilutes the dose and probably enhances absorption (since the digestive system expects to get magnesium from food). But if I forget to take enough magnesium during the day, or feel that I need more, I often take a tablet at bedtime with no ill results. And I believe that other members here do that also. I wouldn't overdo that though (with higher doses), because without the dilution allowed by food, most of a concentrated higher dose is likely to be wasted, anyway. A little snack could easily change that, of course. Topical applications work fine at any time, but I hear you — I only use magnesium oil about 20 minutes or so before a shower.
A safe B complex should be OK. To minimize the risk, most of us either skip them altogether until after we are in remission, or we take only B-12 (preferably the active form, methylcobalamin) and folic acid (preferably the active form, methylfolate), if we feel that we are having the symptoms of vitamin B-12 deficiency.
Your friend/sweetheart must be a super guy for you to still think so highly of him after a breakup. Kudos to him. He will be tough to replace, but your memories of him can still provide support for you in the window of your mind.
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.
Funny though Tex, I have noticed more of these little bruises on my legs in the past week.....since I have increased my magnesium intake!!! Wierd. Anyway, went and got a K which doesn't have soy or rice flour. Just concerned about depleting fat soluble vitamins which is what they say with the cholestyramine..and Im not getting any leafy green veggies in my life!!
How do you know if you are Vitamin B deficient anyway?? Had been taking a B complex for years just thinking it was good for the over 50 crowd (I'm 53 now). Can put it on hold until things are better...
Ya, he's an incredible guy who will always remain a friend. Have been texting him some today. I think some higher power brought him back into my life to get me through all the absolute heartbreak and turmoil that I went through last year. He was the best man at our wedding, and my late husband was his best man. Just didn't see much of him due to them living out of state..he was divorced early last year also..so maybe it was just meant that we were together to help each one of us heal up our hearts....he did that and I have some new great memories from it and someone who will always be there for me
Laine
How do you know if you are Vitamin B deficient anyway?? Had been taking a B complex for years just thinking it was good for the over 50 crowd (I'm 53 now). Can put it on hold until things are better...
Ya, he's an incredible guy who will always remain a friend. Have been texting him some today. I think some higher power brought him back into my life to get me through all the absolute heartbreak and turmoil that I went through last year. He was the best man at our wedding, and my late husband was his best man. Just didn't see much of him due to them living out of state..he was divorced early last year also..so maybe it was just meant that we were together to help each one of us heal up our hearts....he did that and I have some new great memories from it and someone who will always be there for me
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
It's not always easy to tell, but many of us notice things such as muscle twitches or tics (especially beside one of our eyes, on our temple). Some have reported muscle twitches or tics and even pain in the abdominal muscles or leg muscles. Extreme cases can cause weakness in various muscles (similar to magnesium deficiency).LaineHow do you know if you are Vitamin B deficient anyway??
Note that the liver can typically store up to a 5-year supply of vitamin B-12, so B-12 deficiency doesn't become a problem for most MC patients until they have been reacting for a number of years.
Short term, cholestyramine probably does not cause major nutrient deficiencies as long as the timing of doses is carefully observed. However, you are correct — if you take it long-term it will definitely require supplementation of certain vitamins and minerals.
This is probably irrelevant, because you never mentioned taking it, but don't take Krill oil, because it acts as a blood thinner, which will make a bruising problem worse.
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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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
great news - (maybe that is why we encourage people to start taking it cause it does work!!)Funny though Tex, I have noticed more of these little bruises on my legs in the past week.....since I have increased my magnesium intake!!!
with a bit more time, the Vit D3 and magnesium will help with the emotional unsettlements
are you embracing any activities to help the mental and emotional aspects of health, life etc??
let go of these beliefs a bit - in ideal world it would be good to have an eating plan with lots of leafy greensIm not getting any leafy green veggies in my life!!
but we are not in ideal world, we are in MC world.....
we have to let go of previous learnings/beliefs about nutrition. I have not eaten leafy greens for over 7 years. there are other options
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Dont do krill oil Tex!! Bought Benedryl so will try that tonight. I did the antihistamine thing y'all have been talking about here a few years ago for about a year but didn't notice any improvement in things so not really sure I have mast cell issues.
Gabes-I am trying on the relaxation thing. I am a physical therapist in a busy hospital so end up walking about 2 miles/day at work baseline and fortunately get alot of social interaction there. Used to work out alot and ride my bike (late hubby would drop me off at work with my bike and I would ride home 13 miles..mostly in the summer and fall) but haven't been on the bike since this summer-have had some beautiful fall and winter days here but just don't feel well enough or feel like I have the calories to burn with that. Bike riding for me is more a relaxing ..time for me...enjoy the scenery thing than just crazy/fast/hard riding.. Biking is very popular here in Colorado.. Do enjoy my bath every few nights and my blues music..relaxing. Probably need to just get back into my tai chi discs.. The last 2 Saturdays I've gone to volunteer orientation classes at a local animal shelter to become an all around volunteer and a dog walker because I've always loved/had animals and gotten most of them from shelters. Feel like I need to give back more than just
donate food every holiday season!!
So, I will just keep plugging away...dropped eggs out of the equation as I'm not so sure about them..again, no instant reaction but who knows. They were a 6 on the Enterolab testing in 2011...I understand I have probably been in a flare for almost a year..up/down/up/down....good/bad/good/bad. I am eating a ton of turkey and lamb right now...just wish it was a steady improvement and not up/down. Definitely not bloated like I was but still get gurgly at times and my poop is all over the place...diarrhea today with no real diet change. But, feel like I am trying to get something..and let me tell you that sickness has been just making the rounds at the hospital with the coworkers..I haven't done more nasal washes/pounded fluids/etc than this year. So, yes...I get that this is going to take time. I am beginning to get discouraged though and have started thinking that the Entocort I did when first diagnosed with this in 2011 probably did more for me than I thought it did. I really don't want to go back on that again...believe me, I've read all about that here in the ensuing years. Just want to feel better and put some weight back on..
Again-thanks for all the good information and support people. This is definitely an isolating disease and my coworkers just don't understand why I don't just go see a specialist for this because there has to be "something" to take that will solve my problems!!! You all know the drill. They all think we are crazy.
Laine
Gabes-I am trying on the relaxation thing. I am a physical therapist in a busy hospital so end up walking about 2 miles/day at work baseline and fortunately get alot of social interaction there. Used to work out alot and ride my bike (late hubby would drop me off at work with my bike and I would ride home 13 miles..mostly in the summer and fall) but haven't been on the bike since this summer-have had some beautiful fall and winter days here but just don't feel well enough or feel like I have the calories to burn with that. Bike riding for me is more a relaxing ..time for me...enjoy the scenery thing than just crazy/fast/hard riding.. Biking is very popular here in Colorado.. Do enjoy my bath every few nights and my blues music..relaxing. Probably need to just get back into my tai chi discs.. The last 2 Saturdays I've gone to volunteer orientation classes at a local animal shelter to become an all around volunteer and a dog walker because I've always loved/had animals and gotten most of them from shelters. Feel like I need to give back more than just
donate food every holiday season!!
So, I will just keep plugging away...dropped eggs out of the equation as I'm not so sure about them..again, no instant reaction but who knows. They were a 6 on the Enterolab testing in 2011...I understand I have probably been in a flare for almost a year..up/down/up/down....good/bad/good/bad. I am eating a ton of turkey and lamb right now...just wish it was a steady improvement and not up/down. Definitely not bloated like I was but still get gurgly at times and my poop is all over the place...diarrhea today with no real diet change. But, feel like I am trying to get something..and let me tell you that sickness has been just making the rounds at the hospital with the coworkers..I haven't done more nasal washes/pounded fluids/etc than this year. So, yes...I get that this is going to take time. I am beginning to get discouraged though and have started thinking that the Entocort I did when first diagnosed with this in 2011 probably did more for me than I thought it did. I really don't want to go back on that again...believe me, I've read all about that here in the ensuing years. Just want to feel better and put some weight back on..
Again-thanks for all the good information and support people. This is definitely an isolating disease and my coworkers just don't understand why I don't just go see a specialist for this because there has to be "something" to take that will solve my problems!!! You all know the drill. They all think we are crazy.
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Laine,
It's best to not make a habit of using the Benadryl routinely — only use it if it's effective and you really need it, because it has anticholinergic properties.
Tex
It's best to not make a habit of using the Benadryl routinely — only use it if it's effective and you really need it, because it has anticholinergic properties.
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.
Don't worry Tex, won't take it routinely. Think it was Allegra or Zyrtec that I tried daily (whatever everyone on this board was recommending) to see if I did better on it..no real difference noticed so stopped...did take it for awhile though to give it a fair trial.
Just took one Benedryl. We'll see if that helps with my sleep tonight.
Laine
Just took one Benedryl. We'll see if that helps with my sleep tonight.
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Relaxation wise - more of the blues music while you doing the epsom salt foot soak; starting some guided meditation; colouring in; spending time in nature; embracing the tai chi discs etc. with the aim on calming the mind and body and preparing it for sleep..
and the volunteering is also a great idea. Activities that dont involve food etc.
dont get discouraged - healing takes time.... you cant rush it or speed it up.
That is why the calming/relaxation activities are important. learning patience, being ok that this process is going to take time. that MC healing will be 2 steps forward and 1 step back, how to be pro-active about the eating plan, etc without overthinking and being obsessive.
have you spent time reading posts in the success stories area? seeing what others have done and how long it took.
as we have previously mentioned fixing the deficiencies will take 6-8 weeks minimum, and healing can take a few months, and for some it can take 6 months or more.
and the volunteering is also a great idea. Activities that dont involve food etc.
dont get discouraged - healing takes time.... you cant rush it or speed it up.
That is why the calming/relaxation activities are important. learning patience, being ok that this process is going to take time. that MC healing will be 2 steps forward and 1 step back, how to be pro-active about the eating plan, etc without overthinking and being obsessive.
have you spent time reading posts in the success stories area? seeing what others have done and how long it took.
as we have previously mentioned fixing the deficiencies will take 6-8 weeks minimum, and healing can take a few months, and for some it can take 6 months or more.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Honestly...havent read the success story stuff lately because I thought I was a success story for years!! I did lamb bone broth in the crock pot overnight Friday and finished it up and packaged it up last night. Unfortunately in the cooling down process I left the vast majority of it on the hood of my Jeep in the garage overnight...just saw that so had to dump it and am just kicking myself right now!! Just called Whole Foods and had them pull me what bones they had..gonna run over and get this process going again. Too bad it wasn't really cold last night or it would have just been frozen and all would have been ok 
Tex...got the most sleep I have in months with that one Benadryl last night. Amazing. That helps..
Gabes..I never do foot soaks..do a whole bath with Epsom salts in it...know the foot bath would be a more concentrated deal with the magnesium. Is it worthless magnesium wise doing a whole bath???
Again...not bloaty now but gurgly and was last night also...
Gotta go people...they are holding those lamb bones for me!!!
Laine
Tex...got the most sleep I have in months with that one Benadryl last night. Amazing. That helps..
Gabes..I never do foot soaks..do a whole bath with Epsom salts in it...know the foot bath would be a more concentrated deal with the magnesium. Is it worthless magnesium wise doing a whole bath???
Again...not bloaty now but gurgly and was last night also...
Gotta go people...they are holding those lamb bones for me!!!
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt