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Posted 3/14/2017 9:56 PM (GMT 0)
Aging doesn't have anything to do with IBD getting worse. If anything, it tends to hit younger people the hardest.

Did you have another flex sig to confirm that the inflammation was drastically lowered? Would think it was a poor trial if you didn't, but some clinical trials rely on self-reported symptoms rather than endoscopic tests.

I meant a colonoscopy principally, but also a small bowel imaging test since you mentioned problems with the small bowel after eating. It's pretty unlikely to be Crohn's, but you could have a peptic ulcer or something.

At any rate, even if the SCD was capable of controlling your inflammation once, it's sounding like it's less and less able to do so. Sometimes the disease just gets worse, no matter what you do. Some cases of IBD remain roughly the same throughout life, others get worse, despite being on meds or whatever.
Posted 3/14/2017 10:05 PM (GMT 0)
"If anything, it tends to hit younger people the hardest."

i agree - aging definitely hits younger folks the hardest -

so aging has an effect on healthy body parts, but no effect on unhealthy parts - hmmm, ok -
Posted 3/14/2017 10:15 PM (GMT 0)
Was obvious I meant IBD hit younger people the hardest, soy.

so aging has an effect on healthy body parts, but no effect on unhealthy parts - hmmm, ok -

The immune system becomes weaker with age.
Posted 3/14/2017 10:23 PM (GMT 0)
"The immune system becomes weaker with age."


so what about the ability to heal ? you don't think it improves with age do you ?
Posted 3/14/2017 10:29 PM (GMT 0)
What?
Posted 3/14/2017 10:57 PM (GMT 0)
Yes there were two flex sigs done, one before and one after the trial. But the after trial one as I said is not indicative since my diet was very different.

But the thing is SCD still does pretty much keep me in remission from the UC symptoms. I don't need to have the meds, I just take them because it's so easy and they are not strong meds.

I think SCD's ability has slightly weakened in me because of age. And what I mean by that is that SCD is not a digital system - meaning all foods allowed are not completely perfect (i.e. cause zero inflammation). They are just less bad than grains/starches. Even the advanced foods on SCD must cause some inflammation, but it's a matter of degree and what can be tolerated. I'm sure some people cannot even do the advanced SCD foods.

Meaning over the past 10 years having eaten almost all allowed SCD foods, it's still causes very low grade inflammation that does not result in any obvious and immediate UC symptoms other than not perfect bowel movements. So the damage slow accumulates making it appear like SCD is doing a worse job with time. My bet is that I would have absolutely 0 symptoms with no meds if I stayed on strictest SCD forever, but this could have other negative consequences like malnourishment.
Posted 3/14/2017 11:02 PM (GMT 0)
Brucen36, after reading your story i think you should be on remicade or another biologic if travel is difficult. I'm glad scd helps some but it isn't fully healed you if your symptoms are so bad. Why are you against the sttonger meds?
Posted 3/14/2017 11:12 PM (GMT 0)
@brucen - Thing is, millions of people have food hypersensitivity without developing inflammation. As you've got an actual UC diagnosis, I would presume your inflammation is lingering UC inflammation that the SCD can't quite knock on the head instead of food-mediated inflammation.

Particularly as if you had lymphoidnodular hyperplasia (which seems to be only loosely linked with food hypersensitivity and mainly in children at that. And mainly in lactose-intolerant children at that), a colonoscopy would undoubtedly have uncovered it, given its pretty distinctive nodular appearance.

Another possibility is that you have coeliac disease. That wouldn't affect the colon tho', but would affect your small bowel if you ate gluten.
Posted 3/14/2017 11:40 PM (GMT 0)

brucen36 said...
And yes the disease has gotten worse, but I believe that's with aging. In the beginning SCD would result in very normal formed BMs, now they are once a day but no longer formed as they used to be. So yes things are getting worse, which is one of the reasons I do keep the meds around.


NCOT said...
even if the SCD was capable of controlling your inflammation once, it's sounding like it's less and less able to do so. Sometimes the disease just gets worse, no matter what you do.


I agree, my IBD is also getting worse as I get older and it seems each year I must add new items to my forbidden list. (Recently having to give up chocolate was the unkindest cut of all). The SCD has benefit as a gluten-free diet but it is uncommon for the strict SCD to work so well for everyone, you might have been an exception in the beginning.

Most of us who watch our diets find that many foods that the SCD considers illegal (e.g. for me corn, rice, potatoes), are perfectly fine. And many foods that the SCD declares to be OK, such as shellfish and cruciferous vegetables, can cause me serious problems. So maybe as you are getting older there may be some new SCD-legal foods that are causing you problems. A food diary might help you to isolate those new problem foods.

BTW keep up with your meds.
Posted 3/15/2017 12:16 AM (GMT 0)

NiceCupOfTea said...
@brucen - Thing is, millions of people have food hypersensitivity without developing inflammation. As you've got an actual UC diagnosis, I would presume your inflammation is lingering UC inflammation that the SCD can't quite knock on the head instead of food-mediated inflammation.

Particularly as if you had lymphoidnodular hyperplasia (which seems to be only loosely linked with food hypersensitivity and mainly in children at that. And mainly in lactose-intolerant children at that), a colonoscopy would undoubtedly have uncovered it, given its pretty distinctive nodular appearance.

Another possibility is that you have coeliac disease. That wouldn't affect the colon tho', but would affect your small bowel if you ate gluten.

Interestingly, I do have a propensity to be coeliac (based on genetic analysis), but I was tested for it and it came back negative. In any case coeliac wouldn't explain even worse reactions to rice and potatoes, over bread. The reason I think SCD doesn't completely heal is because I am frequently testing new things nowadays in an all out effort to figure out what's going on. I think if I went on really strict SCD for a year or more it would put me in complete remission - BUT only as long as I stay on the diet. So for me at this point, experiments is more important to figure out a way to get off of SCD.
Posted 3/15/2017 12:20 AM (GMT 0)

iPoop said...
Brucen36, after reading your story i think you should be on remicade or another biologic if travel is difficult. I'm glad scd helps some but it isn't fully healed you if your symptoms are so bad. Why are you against the sttonger meds?

My fear is this:
1) Stronger meds don't work because it has nothing to do with the immune system in my case and it's something else altogether

2) Stronger meds will work and I will start eating normal foods, this will continue the underlying inflammation occurring because of all the non-SCD foods I will ingest and at some point the meds will stop working and I will be too far gone for even SCD to pull me back and surgery will be the only option left - I don't want that.

It's basically #2 that worries me the most.
Posted 3/15/2017 12:23 AM (GMT 0)

IamCurious said...

I agree, my IBD is also getting worse as I get older and it seems each year I must add new items to my forbidden list. (Recently having to give up chocolate was the unkindest cut of all). The SCD has benefit as a gluten-free diet but it is uncommon for the strict SCD to work so well for everyone, you might have been an exception in the beginning.

Most of us who watch our diets find that many foods that the SCD considers illegal (e.g. for me corn, rice, potatoes), are perfectly fine. And many foods that the SCD declares to be OK, such as shellfish and cruciferous vegetables, can cause me serious problems. So maybe as you are getting older there may be some new SCD-legal foods that are causing you problems. A food diary might help you to isolate those new problem foods.

BTW keep up with your meds.

Man if I could even eat one of rice, potato or bread. That would be enough for me. I could live happily ever after then. Because the funny thing is that as soon as I eat any of those starches, my SCD symptoms of dehydration, muscle cramps, fatigue all go away. I know his because I have cheated many times. As soon as one set of symptoms are gone, another comes along. It's either UC symptoms or SCD symptoms for me.
Posted 3/15/2017 12:52 AM (GMT 0)

brucen36 said...
2) Stronger meds will work and I will start eating normal foods, this will continue the underlying inflammation occurring because of all the non-SCD foods I will ingest and at some point the meds will stop working and I will be too far gone for even SCD to pull me back and surgery will be the only option left - I don't want that.

80% of people with UC will never have surgery though.

The meds might stop working, but there's a wider variety of meds to choose from compared to even 10 years ago and more will come out over the next 10 years. It's fairly rare for people with UC to completely exhaust all the medical options. It tends to happen to the severe cases who don't really respond to anything at all (like me). People go back and forth on course of steroids (topical steroids are much safer than systemic ones), mesalazine, etc. It's harder to go back and forth on biologics admittedly, but for most folks a biologic will last a good few years before it stops working.

So yeah, I reckon medication would give you a very good chance of getting off the SCD, if you were so inclined.
Posted 3/15/2017 1:06 AM (GMT 0)

NiceCupOfTea said...
What?


"Aging doesn't have anything to do with IBD getting worse"


could you explain your thought process on that cuz it makes no sense to me whatsoever - are you saying while the rest of my body gets older and has a more difficult time with many things (eyesight, hearing, etc) that my colon will not be affected ?
Posted 3/15/2017 1:52 AM (GMT 0)
brucen36 I agree with you on your point 2.
"2) Stronger meds will work and I will start eating normal foods, this will continue the underlying inflammation occurring because of all the non-SCD foods I will ingest and at some point the meds will stop working and I will be too far gone for even SCD to pull me back and surgery will be the only option left - I don't want that."

I just want to also point out here that there is a big difference between food allergy and intolerance. It is a chicken and egg thing, but I think most people with IBD do develop food intolerances because there GI tracts become damaged repeatedly over time. Food intolerances are trickier to figure out unless you are doing a careful elimination diet and may be masked by immune suppressant drugs. In my case even with carefully eliminating most suspect foods I couldn't stop my periodic flares until I realized I was histamine intolerant. By that time I was basically eating all the right foods, but cooking in quantity for convenience and eating left overs, which is a big no-no with histamine intolerance. Anyway I do absolutely believe that those that totally ignore diet are on a path to lifetime of being caught in the medical revolving door. Unfortunately the alternative is a very hard path too. I don't think diet alone is a path to permanent remission and it takes so much discipline. To find the right supplements and finally putting it all together thru tons of study took me years. And while I have helped others (friends and family) benefit from what I have learned, I am certain my approach will not work for everyone. Bottom line is I really try to encourage those on this forum who show an interest in trying to manage their own health, but I certainly understand why others follow medical protocol and take the medications or have the surgery when necessary.
Posted 3/15/2017 12:23 PM (GMT 0)

soynomore said...
"Aging doesn't have anything to do with IBD getting worse"


could you explain your thought process on that cuz it makes no sense to me whatsoever - are you saying while the rest of my body gets older and has a more difficult time with many things (eyesight, hearing, etc) that my colon will not be affected ?

No, your colon can be affected by old age (diverticulosis, colon cancer), but IBD is - mostly - a young person's disease. There's always exceptions, but most folks get IBD for the first time in their late teens or 20s. It isn't a disease of aging unlike, say, diverticulosis which almost never appears before the age of 40 and becomes much more common after the age of 60.

But the process of aging has no effect on IBD. If anything, in theory, flares should become milder in old age because the immune system is weaker in old age. Whether that actually happens in practice or not, I have no idea.
Posted 3/15/2017 3:25 PM (GMT 0)
maybe some of the folks on this forum that have had UC for a while could give some insight -

i'm not sure an early start has much to do with it - pretty sure that we get older everyday regardless -
Posted 3/15/2017 5:19 PM (GMT 0)
It has everything to do with it. It shows that IBD isn't a disease of old age.
Posted 3/15/2017 5:27 PM (GMT 0)

NiceCupOfTea said...


80% of people with UC will never have surgery though.

The meds might stop working, but there's a wider variety of meds to choose from compared to even 10 years ago and more will come out over the next 10 years. It's fairly rare for people with UC to completely exhaust all the medical options. It tends to happen to the severe cases who don't really respond to anything at all (like me). People go back and forth on course of steroids (topical steroids are much safer than systemic ones), mesalazine, etc. It's harder to go back and forth on biologics admittedly, but for most folks a biologic will last a good few years before it stops working.

So yeah, I reckon medication would give you a very good chance of getting off the SCD, if you were so inclined.

I may consider stronger meds once my experimentation with supplements and diets is exhausted.
Posted 3/15/2017 5:30 PM (GMT 0)

boris_badenof said...
brucen36 I agree with you on your point 2.
"2) Stronger meds will work and I will start eating normal foods, this will continue the underlying inflammation occurring because of all the non-SCD foods I will ingest and at some point the meds will stop working and I will be too far gone for even SCD to pull me back and surgery will be the only option left - I don't want that."

I just want to also point out here that there is a big difference between food allergy and intolerance. It is a chicken and egg thing, but I think most people with IBD do develop food intolerances because there GI tracts become damaged repeatedly over time. Food intolerances are trickier to figure out unless you are doing a careful elimination diet and may be masked by immune suppressant drugs. In my case even with carefully eliminating most suspect foods I couldn't stop my periodic flares until I realized I was histamine intolerant. By that time I was basically eating all the right foods, but cooking in quantity for convenience and eating left overs, which is a big no-no with histamine intolerance. Anyway I do absolutely believe that those that totally ignore diet are on a path to lifetime of being caught in the medical revolving door. Unfortunately the alternative is a very hard path too. I don't think diet alone is a path to permanent remission and it takes so much discipline. To find the right supplements and finally putting it all together thru tons of study took me years. And while I have helped others (friends and family) benefit from what I have learned, I am certain my approach will not work for everyone. Bottom line is I really try to encourage those on this forum who show an interest in trying to manage their own health, but I certainly understand why others follow medical protocol and take the medications or have the surgery when necessary.

Did you do a test for histamine intolerance, or you just figured it out by trial and error?
Posted 3/15/2017 7:27 PM (GMT 0)

NCOT said...
No, your colon can be affected by old age (diverticulosis, colon cancer), but IBD is - mostly - a young person's disease. There's always exceptions, but most folks get IBD for the first time in their late teens or 20s. It isn't a disease of aging unlike, say, diverticulosis which almost never appears before the age of 40 and becomes much more common after the age of 60.

But the process of aging has no effect on IBD. If anything, in theory, flares should become milder in old age because the immune system is weaker in old age. Whether that actually happens in practice or not, I have no idea.

I think you and soy are arguing two different things here. Disease onset and disease progression are not the same. It is pretty well established that Crohn's is a progressive disease, but I could not recall whether or not I had ever read anything that alluded to this in UC, although I just sort of assumed it was also progressive and would get worse with age. I stumbled across a clinical review from 2011 that argues that UC is, in fact, a progressive disease. Food for thought if you'd like to read through at some point. It's a bit long. There were some interesting tidbits of information in the article that I did not know. See link:


onlinelibrary.wiley.com/doi/10.1002/ibd.22839/full
Posted 3/15/2017 8:11 PM (GMT 0)
brucen36: I had only vaguely heard of histamine intolerance when someone brought it up here. But at that time I had some genetic testing and saw I was likely to have methylation issues that can lead to problems eliminating histamine. My eureka moment was taking a Benadryl one day after doing some gardening. I was in a flare at the time and the Benadryl immediately slowed/stopped my gurgling and feeling like I had water in my colon. I continued taking 3 Benadryl a day and within 4 days I went from 4 - 7 BM's to constipation. I am now down to 1.5 a day (I break them in half) as Grape Seed Extract has a similar effect and of course doesn't cause drowsiness. I have been able to expand my diet now and take supplements that I couldn't tolerate before. P.S. I take a choline supplement called Alpha GPC to help counter the fog Benadryl can cause.
Posted 3/15/2017 8:24 PM (GMT 0)

NiceCupOfTea said...
It has everything to do with it. It shows that IBD isn't a disease of old age.



huh ? so you're saying that if someone acquires UC at 25, by the time they reach .... what, say 50, or ....60, it magically disappears ?? huh what ?
Posted 3/15/2017 8:43 PM (GMT 0)

soynomore said...

NiceCupOfTea said...
It has everything to do with it. It shows that IBD isn't a disease of old age.



huh ? so you're saying that if someone acquires UC at 25, by the time they reach .... what, say 50, or ....60, it magically disappears ?? huh what ?

No.

I'm saying IBD doesn't deteriorate in old age the way eyesight or hearing does. There might be cumulative damage from IBD, but that tends to happen long before the person reaches old age.
Posted 3/15/2017 9:47 PM (GMT 0)
ok - so now you are talking like IBD is a living thing - i'm gonna give up - you win -
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