Hi there.
So, it has been about 3.5mths since I got a really bad cold (probably RSV), which triggered another flare. It took me 7wks to accept it was a flare and not just the virus and then I slowly moved back to safe foods. I've been eating safe foods for about 8wks now and I'm seeing next to no progress. Though I think the longest I've gone with only the safest of foods has been 6 days. I keep having something that was safe for me pre-March that seems not to be safe anymore, which sucks. I seem to be stuck at type 6 stool, ocassionally getting to 5 or 4, but it is only ever fleeting. I also seem to be highly sensitive to fat this time around and any increase in fat intake (e.g a slightly fatty cut of meat or stew) gives me explosive #6, almost 7. I'm also taking 1/4-3/4 of Immodium daily, depending on how things are. Sometimes half is too much, sometimes I need it.
I just started LDN 10 days ago and for the first two days I had miraculous Normans, the best in months. Though from day 3 onwards things got worse again and I am back to 6s most days, sometimes 5, but still yellowish and not quite right. I've also been experiencing stomach cramps. They were really bad a few days ago and they've lessened since them, but I am concerned the LDN is causing them and making my stool worse. I am very fearful of irritating my gut more, as then it will take longer to heal.
This morning I've had really bad #6, quite explosive and stinging. Last night I had some broccoli heads, which I was fine with in the past few weeks. Perhaps the stew I made was too fatty from the cuts of meat. My husband also has some D this week and cramps, so it could be a bug from the kids and a coincidence.
I am close to giving up on the LDN for fear and also feelings that despite having next to noside effects (for some), it is still a medication and I'd prefer to avoid them. Then again, I am feeling so low that I am also on the verge of asking for Budenoside just to try and get out of this flare.
I'm also starting to lose weight again, which tells me my body isn't absorbing nutrients. At the moment it seems I can only eat, carrot, red and purple potatoes, sweet potato, very lean beef, chicken, lean pork, white fish, broth that I make, stewed apple and banana.
I am at a loss and feeling really down. The first time I heard so much more quickly.
Alice
Feeling really stuck and down
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: Feeling really stuck and down
I get the impression from reading your post that you may be more inflamed than you were originally, which is why this flare may be more difficult to resolve. If that's the case, then you may need to be much more careful with your diet, especially concerning slip-ups.
Regarding the LDN, that shouldn't be affecting your MC, however, the quickest way to find out for sure, is to stop using it for a while.
We're not immune to common digestive system issues, just because we have MC. So if your husband, or someone else in the family is having digestive problems, then you might be having the same problem. And if you are, it might take you longer to get over it. And remember, stress, and many other things can trigger an MC flare, or prevent us from resolving one.
Tex
Regarding the LDN, that shouldn't be affecting your MC, however, the quickest way to find out for sure, is to stop using it for a while.
We're not immune to common digestive system issues, just because we have MC. So if your husband, or someone else in the family is having digestive problems, then you might be having the same problem. And if you are, it might take you longer to get over it. And remember, stress, and many other things can trigger an MC flare, or prevent us from resolving one.
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.
Re: Feeling really stuck and down
Thanks for replying Tex.
I think that you are right, in that there is probably much more inflammation than there was previously. Strangely I only need to go once a day, twice on a bad day, though that one time just isn't great at all.
Apparently the filler in the LDN capsule can cause some people grief, but my pharmacist believes it isn't that, as she used Loxoral, which she says is extremely low allergenic. She thinks it is more likely a reaction to the active ingredient, as some people get worse before they get better. She also said she could use magneisum glycinate as a filler. I'd originally turned this down, as I was triggered by oral magnesium last year, but she said each capsule would only have about 5mg of the magnesium and I'd only be taking one a day at first and max three in several months time. Do you think I should risk trialling that? She said she could make me some capsules just with mag glycinate for me to try first. Otherwise, she can offer me a liquid, but the fillers are water, Amorphophallus Konjac Root Powder, Monk Fruit Extract, Xantham Gum, Potassium Sorbate, Sodium Benzoate, Citric Acid and Disodium EDTA - a long list and I told her if I do react, I will have no idea what I'm reacting to. I am particularly wary of the gum. She gave me some of the filler to try, but I am wary to even try it. What do you think?
You are also right that I am not immune to normal gastro issues, so perhaps I do have some random bug, that is affecting me worse than my husband, because my gut is already inflamed. All three kids have been very gassy the last two weeks and each had a few days of almost D, so most likely that too.
Do you have any idea/theory as to why I am so much more sensitive to fat this time around? I sometimes worry that perhaps something is going on with another organ (pancreas etc).
I will try and avoid any slips ups from now on. Gosh, I never considered broccoli a slip up, as I could eat it even a couple of weeks ago, but it seems that something in the last two weeks has made me even more sensitive (all the above! lol).
Gosh I am finding this hard mentally, so much harder than last time. I keep placing timelines on my healing - last year in was Christmas and the desire to eat/drink merrily, this year it was Easter and now my birthday in August. I think I need to forget about cake and bubbles for this year and just focus on healing and know I can enjoy myself on these occasions without the usual celebratory food items.
Alice
I think that you are right, in that there is probably much more inflammation than there was previously. Strangely I only need to go once a day, twice on a bad day, though that one time just isn't great at all.
Apparently the filler in the LDN capsule can cause some people grief, but my pharmacist believes it isn't that, as she used Loxoral, which she says is extremely low allergenic. She thinks it is more likely a reaction to the active ingredient, as some people get worse before they get better. She also said she could use magneisum glycinate as a filler. I'd originally turned this down, as I was triggered by oral magnesium last year, but she said each capsule would only have about 5mg of the magnesium and I'd only be taking one a day at first and max three in several months time. Do you think I should risk trialling that? She said she could make me some capsules just with mag glycinate for me to try first. Otherwise, she can offer me a liquid, but the fillers are water, Amorphophallus Konjac Root Powder, Monk Fruit Extract, Xantham Gum, Potassium Sorbate, Sodium Benzoate, Citric Acid and Disodium EDTA - a long list and I told her if I do react, I will have no idea what I'm reacting to. I am particularly wary of the gum. She gave me some of the filler to try, but I am wary to even try it. What do you think?
You are also right that I am not immune to normal gastro issues, so perhaps I do have some random bug, that is affecting me worse than my husband, because my gut is already inflamed. All three kids have been very gassy the last two weeks and each had a few days of almost D, so most likely that too.
Do you have any idea/theory as to why I am so much more sensitive to fat this time around? I sometimes worry that perhaps something is going on with another organ (pancreas etc).
I will try and avoid any slips ups from now on. Gosh, I never considered broccoli a slip up, as I could eat it even a couple of weeks ago, but it seems that something in the last two weeks has made me even more sensitive (all the above! lol).
Gosh I am finding this hard mentally, so much harder than last time. I keep placing timelines on my healing - last year in was Christmas and the desire to eat/drink merrily, this year it was Easter and now my birthday in August. I think I need to forget about cake and bubbles for this year and just focus on healing and know I can enjoy myself on these occasions without the usual celebratory food items.
Alice
Re: Feeling really stuck and down
If you're going to continue with the LDN, definitely go with the magnesium glycinate. That's normally the safest form of magnesium for us.
I'm guessing that your inflammation has increased because you have never allowed your intestines to heal sufficiently. Complete healing requires 2 to 5 years. Like most of us, you continue to push your body to accept too many "new" foods, too soon. By doing that as soon as you get into remission, you stay in a state of marginal remission (flirting with a relapse), most of the time. Then, one day you either go a bit too far, or slip up, and you're almost immediately right back in a flare (because you never gave yourself any margin of extra healing time).
I did the same thing myself, when I was initially recovering, 15 years ago. That's just human nature — we're anxious to get back to "normal". We don't seem to fully comprehend at the time, that we're never going to get back to "normal". Because I didn't know any better, I kept trying to add new foods to my diet. Back then, I didn't have any idea how long it takes the intestines to heal. I would have mini-flares (for a day or two), due to trying "new" foods. Fortunately, I had been carefully avoiding gluten for so long, that I was able to recover quickly, when I cut the "new" food back out of my diet. But all that foolishness just interrupts and delays the healing process.
If I had it to do over, I wouldn't try to add anything to my recovery diet for at least 2 years, after reaching remission, to allow my digestive system time to heal.
But probably the most serious risk (from not allowing sufficient healing time) is that when the inflammation is allowed to continue (albeit at a reduced level), this implies that the inflammation in any and all organs in the digestive system may cause them to continue to function at a reduced output level. Therefore, organs such as the pancreas will continue to have reduced enzyme production (due to the inflammation), and the reduced lypase production, will prevent the proper digestion of fats in the diet. In other words, the longer the inflammation continues, the greater the effect tends to be on enzyme production.
I hope this helps.
Tex
I'm guessing that your inflammation has increased because you have never allowed your intestines to heal sufficiently. Complete healing requires 2 to 5 years. Like most of us, you continue to push your body to accept too many "new" foods, too soon. By doing that as soon as you get into remission, you stay in a state of marginal remission (flirting with a relapse), most of the time. Then, one day you either go a bit too far, or slip up, and you're almost immediately right back in a flare (because you never gave yourself any margin of extra healing time).
I did the same thing myself, when I was initially recovering, 15 years ago. That's just human nature — we're anxious to get back to "normal". We don't seem to fully comprehend at the time, that we're never going to get back to "normal". Because I didn't know any better, I kept trying to add new foods to my diet. Back then, I didn't have any idea how long it takes the intestines to heal. I would have mini-flares (for a day or two), due to trying "new" foods. Fortunately, I had been carefully avoiding gluten for so long, that I was able to recover quickly, when I cut the "new" food back out of my diet. But all that foolishness just interrupts and delays the healing process.
If I had it to do over, I wouldn't try to add anything to my recovery diet for at least 2 years, after reaching remission, to allow my digestive system time to heal.
But probably the most serious risk (from not allowing sufficient healing time) is that when the inflammation is allowed to continue (albeit at a reduced level), this implies that the inflammation in any and all organs in the digestive system may cause them to continue to function at a reduced output level. Therefore, organs such as the pancreas will continue to have reduced enzyme production (due to the inflammation), and the reduced lypase production, will prevent the proper digestion of fats in the diet. In other words, the longer the inflammation continues, the greater the effect tends to be on enzyme production.
I hope this helps.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Re: Feeling really stuck and down
Thank you for your response Tex.
Yes, we are human and we forget easily and slip up easily. I guess I still haven't accepted that I will have a new normal, not that I was trying to get there last time, but I was definitely too quick to introduce sugars and alcohol (and as much as I enjoy a glass of wine, I think it will likely have to go forever).
As for ththe LDN, I didn't take it on Friday night and Saturday morning I had a type 4 BM, albeit quite thin, but that is expected with such a low fibre diet. I then tried the LDN again on Saturday night at a third of the dose (so only .5mg) and this morning (Sunday) I had to go first thing and it was type 6. I didn't change anything else. I don't think I am going to push through with it, despite many people saying symptoms can get worse before they get better. I reached remission via diet alone last year, so I can do it again. For now, I am not willing to risk the increased inflammation that the LDN is likely causing on the off chance it may get better afterwards, as any extra inflammation prolongs healing.
Alice
Yes, we are human and we forget easily and slip up easily. I guess I still haven't accepted that I will have a new normal, not that I was trying to get there last time, but I was definitely too quick to introduce sugars and alcohol (and as much as I enjoy a glass of wine, I think it will likely have to go forever).
As for ththe LDN, I didn't take it on Friday night and Saturday morning I had a type 4 BM, albeit quite thin, but that is expected with such a low fibre diet. I then tried the LDN again on Saturday night at a third of the dose (so only .5mg) and this morning (Sunday) I had to go first thing and it was type 6. I didn't change anything else. I don't think I am going to push through with it, despite many people saying symptoms can get worse before they get better. I reached remission via diet alone last year, so I can do it again. For now, I am not willing to risk the increased inflammation that the LDN is likely causing on the off chance it may get better afterwards, as any extra inflammation prolongs healing.
Alice
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: Feeling really stuck and down
Alice
i have never been able to tolerate broccoli
are you taking Vit D3 and magnesium?
i have never been able to tolerate broccoli
are you taking Vit D3 and magnesium?
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Re: Feeling really stuck and down
Hi Gabes,
The weird thing is I was fine with it a week or so ago and in prior remission earlier in the year.
Yes, taking D3 - my levels went from 52 to 107 in 6 mths!! So now I am taking only 2000 a day.
Magnesium via Epsom Salt Baths and cream.
Alice
The weird thing is I was fine with it a week or so ago and in prior remission earlier in the year.
Yes, taking D3 - my levels went from 52 to 107 in 6 mths!! So now I am taking only 2000 a day.
Magnesium via Epsom Salt Baths and cream.
Alice
Re: Feeling really stuck and down
If that's in international units (mmol/L), in my opinion, you'll do better if you get it up to around 125–150 mmol/L. That's where I try to keep mine (50–60 ng/mL, which is equivalent to 125–150 mmol/L, in international units).
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.
Re: Feeling really stuck and down
Thank you for your response Tex.
Yes, we are human and we forget easily and slip up easily. I guess I still haven't accepted that I will have a new normal, not that I was trying to get there last time, but I was definitely too quick to introduce sugars and alcohol (and as much as I enjoy a glass of wine, I think it will likely have to go forever).
As for ththe LDN, I didn't take it on Friday night and Saturday morning I had a type 4 BM, albeit quite thin, but that is expected with such a low fibre diet. I then tried the LDN again on Saturday night at a third of the dose (so only .5mg) and this morning (Sunday) I had to go first thing and it was type 6. I didn't change anything else. I don't think I am going to push through with it, despite many people saying symptoms can get worse before they get better. I reached remission via diet alone last year, so I can do it again. For now, I am not willing to risk the increased inflammation that the LDN is likely causing on the off chance it may get better afterwards, as any extra inflammation prolongs healing.
As for the Vit D levels, I'll have to look that up.
Alice
Yes, we are human and we forget easily and slip up easily. I guess I still haven't accepted that I will have a new normal, not that I was trying to get there last time, but I was definitely too quick to introduce sugars and alcohol (and as much as I enjoy a glass of wine, I think it will likely have to go forever).
As for ththe LDN, I didn't take it on Friday night and Saturday morning I had a type 4 BM, albeit quite thin, but that is expected with such a low fibre diet. I then tried the LDN again on Saturday night at a third of the dose (so only .5mg) and this morning (Sunday) I had to go first thing and it was type 6. I didn't change anything else. I don't think I am going to push through with it, despite many people saying symptoms can get worse before they get better. I reached remission via diet alone last year, so I can do it again. For now, I am not willing to risk the increased inflammation that the LDN is likely causing on the off chance it may get better afterwards, as any extra inflammation prolongs healing.
As for the Vit D levels, I'll have to look that up.
Alice
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: Feeling really stuck and down
Alcohol is fairly inflammatory - i didnt drink any alcohol for about 5 years while I was doing solid healing.
now it is a treat - once very 2-3 months no more than 2 glasses.
If i am having alcohol i increase things like Vit D3 and magnesium couple of days before and after to help body cope with increased inflammation
there is an article somewhere in this forum, having good vit D3 levels is one thing. We need good levels of magnesium for the body to USE that Vit D3 to full potential.
Things like hormone changes, coffee, other medications deplete magnesium.
Healing and having minimal symptoms is a spinning plates game, we have to do lots of little things constantly. There is no one thing that solves the issues.
now it is a treat - once very 2-3 months no more than 2 glasses.
If i am having alcohol i increase things like Vit D3 and magnesium couple of days before and after to help body cope with increased inflammation
there is an article somewhere in this forum, having good vit D3 levels is one thing. We need good levels of magnesium for the body to USE that Vit D3 to full potential.
Things like hormone changes, coffee, other medications deplete magnesium.
Healing and having minimal symptoms is a spinning plates game, we have to do lots of little things constantly. There is no one thing that solves the issues.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Re: Feeling really stuck and down
Gabes, yes I really need to stay away from alcohol for a couple of years at least. This really shines a light on how addicted I have been to a casual drink. Gosh knows it is the most socially acceptable drug, especially in Australia.
As for my Vit D levels Tex, the report says 107 nmol/L, so I think that is the same.
As for my Vit D levels Tex, the report says 107 nmol/L, so I think that is the same.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: Feeling really stuck and down
there are safer options
things like vodka lime and soda is a better option compared to wine (no sugar, no preservatives, no histamine triggers)
yeah - us aussies tend to like a drink! i live 30 mins from one of the key wine regions of the country!
over here there are loads of organic / low sulphide wines that are tolerated better ( less histamine issues)
and as I mentioned i budget for socializing treats. I stick with really bland safe meals for a couple of days beforehand, take extra supps
I had a work dinner the other week it was short notice unplanned, i ate spicy food, had wine and high risk of gluten exposure - I came home, took 3000iu Vit D3, sprayed my body in Magnesium before i went to bed, next morning got up and did mag soak took more Vit D3 and had no issues with my digestion etc
things like vodka lime and soda is a better option compared to wine (no sugar, no preservatives, no histamine triggers)
yeah - us aussies tend to like a drink! i live 30 mins from one of the key wine regions of the country!
over here there are loads of organic / low sulphide wines that are tolerated better ( less histamine issues)
and as I mentioned i budget for socializing treats. I stick with really bland safe meals for a couple of days beforehand, take extra supps
I had a work dinner the other week it was short notice unplanned, i ate spicy food, had wine and high risk of gluten exposure - I came home, took 3000iu Vit D3, sprayed my body in Magnesium before i went to bed, next morning got up and did mag soak took more Vit D3 and had no issues with my digestion etc
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Re: Feeling really stuck and down
Yeah, you're in the Hunter Valley, aren't you? Lovely area.
I've never been big on spirits, but I do like a good mojito and I imagine white rum is pretty safe (for later on).
I only ever buy preservative free wine these days, but even that was obviously too much for me in my brief few months of remission. I did wait several months, but then I probably drank too regularly again.
I'll keep in mind those tips for the future.
I've never been big on spirits, but I do like a good mojito and I imagine white rum is pretty safe (for later on).
I only ever buy preservative free wine these days, but even that was obviously too much for me in my brief few months of remission. I did wait several months, but then I probably drank too regularly again.
I'll keep in mind those tips for the future.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: Feeling really stuck and down
as it is our winter and the current extended cold spell, i have increased my Vit D3
that couple with the current Covid outbreaks, i am making sure my immune system is protected
did you see the post i did about why magnesium and Vit D3 are important. there are multiple studies confirming importance of VIt D, magnesium for immune. some studies mention zinc as well.
that couple with the current Covid outbreaks, i am making sure my immune system is protected
did you see the post i did about why magnesium and Vit D3 are important. there are multiple studies confirming importance of VIt D, magnesium for immune. some studies mention zinc as well.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Re: Feeling really stuck and down
Hi Gabes,
Yes, I have learnt so much about the importance of Vit D from this group, hence why I've been taking around 5000 a day and have managed to get my levels from 52 (barely "normal") to 107 in 6mths.
Luckily, I love in Brisbane, so there is sun all year.
As for the magnesium, I've also read all about it here and I use cream daily and epsom salt baths a couple of times a week, though I have no idea what my levels are. Is that something we can get tested here?
Yes, I have learnt so much about the importance of Vit D from this group, hence why I've been taking around 5000 a day and have managed to get my levels from 52 (barely "normal") to 107 in 6mths.
Luckily, I love in Brisbane, so there is sun all year.
As for the magnesium, I've also read all about it here and I use cream daily and epsom salt baths a couple of times a week, though I have no idea what my levels are. Is that something we can get tested here?