Re: menstral pain

[Guest guest]

I know that the original date on this topic was from last year but I only just

joined this group recently and I had a question about it. As many of you

mentioned I tend to have mini-flares every month. Before my period starts and

during...my UC acts up and I'm just completely debilitated for several days at

least. I've always had really pad cramps and such though I did notice if I

don't have any dairy, increase my calcium and exercise the pain is better. I

don't eat any illegals and the flares always start before I take anything for

the pain (tylenol is the only OTC med I'm allowed to have says my GI) so the

theory is that these little flares are hormone related.

Ever since I started the diet (oh-so-many-years-ago) I've been wondering

something. Elaine said that we had to be symptom free for a year before adding

anything back into our diet. Now I'm not planning on going off SCD anytime soon

but I did want to know if these mini-flares counted. I mean, would I ever have

the option of adding other foods back into my diet if I get these flares every

month? Again, not that I'm planning on going off SCD, it's just something I

wonder about.

Stacey

[Guest guest]

I know that the original date on this topic was from last year but I only just

joined this group recently and I had a question about it. As many of you

mentioned I tend to have mini-flares every month. Before my period starts and

during...my UC acts up and I'm just completely debilitated for several days at

least. I've always had really pad cramps and such though I did notice if I

don't have any dairy, increase my calcium and exercise the pain is better. I

don't eat any illegals and the flares always start before I take anything for

the pain (tylenol is the only OTC med I'm allowed to have says my GI) so the

theory is that these little flares are hormone related.

Ever since I started the diet (oh-so-many-years-ago) I've been wondering

something. Elaine said that we had to be symptom free for a year before adding

anything back into our diet. Now I'm not planning on going off SCD anytime soon

but I did want to know if these mini-flares counted. I mean, would I ever have

the option of adding other foods back into my diet if I get these flares every

month? Again, not that I'm planning on going off SCD, it's just something I

wonder about.

Stacey

[Guest guest]

> I know that the original date on this topic was from last year but I

> only just joined this group recently and I had a question about it.

> As many of you mentioned I tend to have mini-flares every month.

> Before my period starts and during...my UC acts up and I'm just

> completely debilitated for several days at least. I've always had

> really pad cramps and such though I did notice if I don't have any

> dairy, increase my calcium and exercise the pain is better.

Hey Stacey

Yeah, exercise is really important, because it produces endorphins

which negates pain. I had basically figured that out years ago for

myself ( thought I didn't know it was the endorphins) so I was

pleased to read recently that the whole thinking on dealing with

menstruation has shifted in conventional medical opinion - and

whereas it used to be recommended not to exercise (pale flowers,

etc.), now the opposite is true.

> I don't eat any illegals and the flares always start before I take

> anything for the pain (tylenol is the only OTC med I'm allowed to

> have says my GI) so the theory is that these little flares are

> hormone related.

>

> Ever since I started the diet (oh-so-many-years-ago) I've been

> wondering something. Elaine said that we had to be symptom free for

> a year before adding anything back into our diet. Now I'm not

> planning on going off SCD anytime soon but I did want to know if

> these mini-flares counted. I mean, would I ever have the option of

> adding other foods back into my diet if I get these flares every

> month? Again, not that I'm planning on going off SCD, it's just

> something I wonder about.

Well, there's always LDN. I haven't been getting those little flare

spikes recently with menstruation now that I am on LDN, which

makes it easier to do the Elaine regulated year long countdown.

Mara

[Guest guest]

Mara, thank you for responding. I know that exercise makes me feel better

during that time of the month (though there's a day or two where I can't move).

Unfortunately it's very rarely better enough for me to be able to function. I

found a homeopathic remedy that helps a little but the UC flare still really

disturbs me. Even when I'm exercising and getting enough calcium I will still

have about a week or more where I flare. Heh...sadly the indicator for my

period coming is my UC. The thing is, I really want to get off all my meds but

I don't think I'm confident enough to trust I'll be alriht if I'm still having a

flare every month. And this is with being strictly (no cheats whatsoever) SCD

for many years now. Have other ladies had this problem and gone off meds with

no issues?

As for LDN? Honestly I've only done a very little bit of research on it and

that's only because most people posting here seem to be so excited about it but

for me it boils down to one thought, " it's another medication. " I'd like to be

off all my meds. I think we all would, right? Plus I recently had a really

bad flare up and was put back on prednisone. From what I read in one of these

posts, LDN wasn't something that should go with prednisone. I don't like the

drug (pred) but going intro didn't work this time. Ah well, these things happen

and as much as I dislike being on pred (b/c of the side effects) it has helped

me significantly. Plus my doc is really good about trying to get me off of it

quickly. Yay!

>

> Hey Stacey

>

> Yeah, exercise is really important, because it produces endorphins

> which negates pain. I had basically figured that out years ago for

> myself ( thought I didn't know it was the endorphins) so I was

> pleased to read recently that the whole thinking on dealing with

> menstruation has shifted in conventional medical opinion - and

> whereas it used to be recommended not to exercise (pale flowers,

> etc.), now the opposite is true.

> Well, there's always LDN. I haven't been getting those little flare

> spikes recently with menstruation now that I am on LDN, which

> makes it easier to do the Elaine regulated year long countdown.

>

> Mara

>

[Guest guest]

I take a birth control almost continuously (at my doc's suggestion to help with

my anemia). I only stop it when I have break through bleeding (currently every 4

to 5 months). Back in April (I think), I had a period (HA HA) of a week or two

where I was getting pains in my side that usually indicate a flare up. Looking

back, it probably was around the time that I quit taking the pill for a week.

I'd never really connected menstruation and flares before. I know a lot of

people are against taking the pill (it has lactose in it), but I think I'll

stick with them if it means less flares!

Boy, it only took me 15 years to figure out the flare/period connection ;-).

Holly

Crohn's

SCD 12/01/08

>

> Mara, thank you for responding. I know that exercise makes me feel better

during that time of the month (though there's a day or two where I can't move).

Unfortunately it's very rarely better enough for me to be able to function. I

found a homeopathic remedy that helps a little but the UC flare still really

disturbs me. Even when I'm exercising and getting enough calcium I will still

have about a week or more where I flare. Heh...sadly the indicator for my

period coming is my UC. The thing is, I really want to get off all my meds but

I don't think I'm confident enough to trust I'll be alriht if I'm still having a

flare every month. And this is with being strictly (no cheats whatsoever) SCD

for many years now. Have other ladies had this problem and gone off meds with

no issues?

>

> As for LDN? Honestly I've only done a very little bit of research on it and

that's only because most people posting here seem to be so excited about it but

for me it boils down to one thought, " it's another medication. " I'd like to be

off all my meds. I think we all would, right? Plus I recently had a really

bad flare up and was put back on prednisone. From what I read in one of these

posts, LDN wasn't something that should go with prednisone. I don't like the

drug (pred) but going intro didn't work this time. Ah well, these things happen

and as much as I dislike being on pred (b/c of the side effects) it has helped

me significantly. Plus my doc is really good about trying to get me off of it

quickly. Yay!

>

[Guest guest]

IMO-you may reconsider if you read breakthrough by suzanne somers - they're not

good and most here i think get happier periods- yes a lil looser bm i get- but

not a flare from periods

eileen 18 months scd

> >

> > Mara, thank you for responding. I know that exercise makes me feel

better during that time of the month (though there's a day or two where I can't

move). Unfortunately it's very rarely better enough for me to be able to

function. I found a homeopathic remedy that helps a little but the UC flare

still really disturbs me. Even when I'm exercising and getting enough calcium I

will still have about a week or more where I flare. Heh...sadly the indicator

for my period coming is my UC. The thing is, I really want to get off all my

meds but I don't think I'm confident enough to trust I'll be alriht if I'm still

having a flare every month. And this is with being strictly (no cheats

whatsoever) SCD for many years now. Have other ladies had this problem and gone

off meds with no issues?

> >

> > As for LDN? Honestly I've only done a very little bit of research on it and

that's only because most people posting here seem to be so excited about it but

for me it boils down to one thought, " it's another medication. " I'd like to be

off all my meds. I think we all would, right? Plus I recently had a really

bad flare up and was put back on prednisone. From what I read in one of these

posts, LDN wasn't something that should go with prednisone. I don't like the

drug (pred) but going intro didn't work this time. Ah well, these things happen

and as much as I dislike being on pred (b/c of the side effects) it has helped

me significantly. Plus my doc is really good about trying to get me off of it

quickly. Yay!

> >

>

[Guest guest]

>>

>>>

>>> Mara, thank you for responding. I know that exercise makes me

>>> feel better during that time of the month (though there's a day or

>>> two where I can't move). Unfortunately it's very rarely better

>>> enough for me to be able to function. I found a homeopathic

>>> remedy that helps a little but the UC flare still really disturbs

>>> me. Even when I'm exercising and getting enough calcium I will

>>> still have about a week or more where I flare. Heh...sadly the

>>> indicator for my period coming is my UC. The thing is, I really

>>> want to get off all my meds but I don't think I'm confident enough

>>> to trust I'll be alriht if I'm still having a flare every month.

>>> And this is with being strictly (no cheats whatsoever) SCD for

>>> many years now. Have other ladies had this problem and gone off

>>> meds with no issues?

>>>

>>> As for LDN? Honestly I've only done a very little bit of research

>>> on it and that's only because most people posting here seem to be

>>> so excited about it but for me it boils down to one thought, " it's

>>> another medication. " I'd like to be off all my meds. I think we

>>> all would, right?

I dunno. It's a complicated question. I think for a long time I just

assumed I'd

be on some form of sulfasalazine for the rest of my life - and I just

got used to

the idea of managing a lifetime disease rather than having some goal

of being

med free, even though I long suspected colazal was not doing a thing

for me -

at most preventing me from getting worse.

Then I tried remicade, which I was also aware - if it worked - would

be a lifetime

thing. And I was on that for over a year - even though it was all a

big waste of

time and insurance money and did nothing for me.

Then when I seemed to be going in a negative trajectory, symptom-wise

(I was never in remission) I started looking for other options because I

never wanted to be forced on prednisone. And that's when I came

across a

reference to SCD, after a few other things. I already knew that

gluten was

bad for my symptoms.

And SCD is a long term commitment, too, if not a life time commitment,

particularly in the case of UC people, since we don't have that

peacekeeper T cell to keep bad bacteria from breaching the intestinal

gut wall and causing the auto-immune reaction to occur.

Then, after having anything but a linear reaction to SCD, it was more

cyclical, going over all in the right direction with decreasing

symptoms and

other related issues, but with lots of huge bumps along the way, (for

instance,

my 3 month flare lasted 4 months), I added in LDN and that kicked up the

steadiness of my recovery immensely. Now I am having a linear recovery

and am symptom free and in remission. I dropped the colazal completely

one day (6-9 pills a day no more) to no ill effect, confirming the

fact that they

didn't do sh*t for me, and now I'm med free except for LDN and SCD -

both of them working together.

Last week I had a day where I had to do a public performance (which I

find

really stressful) after getting my period, either of these alone

previously enough

to give me symptoms or, back a ways on SCD, start a flare - and nada -

not even

bad cramps.

I assume I'm going to be on some form of SCD long term - though not as

strict as say Jodi or Marilyn - so if I'm on LDN, too, I guess it is

not an

issue of pride or goal fulfillment or dread of medicine for me the way

it

is for some people.

LDN makes me feel great - it's not like any other drug I've ever taken -

it's an endorphin kick, like the way you feel after you exercise, before

the tiredness sets in afterwards, and the way that raises your whole

sense of well being, psychological, physical, spiritual, sexual. I

always knew

that exercising reduced my general achiness, I just never knew that was

because people with autoimmune disease have lower endorphin

levels, and that exercise kicked up the level of endorphins and

endorphins gets rid of - negates - low level pain. I guess I also was

not

aware that I was probably more achy than other people because of the

auto-immune disease. I had sort of mythologized the situation into

a belief that because I was naturally athletic, I was more sensitive

than others

about the fact that I needed to keep on exercising to feel good.

So, for me personally, exercise has always been part of my personal

therapy, which I maintain. LDN is medical therapy in the exact kind of

direction I had long ago figured out worked really, really well for

me. Just

more of it, every day, through a medical intervention.

I feel like my own personal goal is to feel terrific and it is still

never to

have to go on prednisone for gut issues - or anything else if I can help

it. And to maintain and strengthen the remission I am now in. I care

way more about that personally than being technically " med free " . I

had gotten to the point before SCD where I was more than cynical about

believing that any of the medical interventions were ever going to

work for

me. So it's a blessing just to be this much better.

So being " med free " is less of an issue for me than it is for some

others,

since there is always going to be some kinds of interventions going on

in my life - SCD, exercise, etc - because otherwise I could flare back

up

at any point.

And the issue of whether LDN is for life or not for IBS people appears

to

be still unresolved - both yays and nays on that one.

>>> Plus I recently had a really bad flare up and was put back on

>>> prednisone. From what I read in one of these posts, LDN wasn't

>>> something that should go with prednisone. I don't like the drug

>>> (pred) but going intro didn't work this time. Ah well, these

>>> things happen and as much as I dislike being on pred (b/c of the

>>> side effects) it has helped me significantly.

>>> Plus my doc is really good about trying to get me off of it

>>> quickly. Yay!

That's good at least.

Mara

[Guest guest]

Thanks for telling your story Mara- it is really inspiring. I think the goal of

SCD is feeling well and managing a long term situation. For those who are able

to go med free- great. For those who are much better off on SCD anyway- great

too.

I have been reading your posts with interest- you have a lot of good

information. I have also been reading about LDN. I live in a small town and I

asked our local compounding pharmacy if they had filled any prescriptions for

LDN- none. I know I would have to travel to get any of it. Thankfully I am doing

well on SCD- but keeping an eye on all my options.

I also exercise regularly and feel it is important to keep those endorphin

levels as high as possible. It's a great incentive.

Thank you for all your posts.

PJ

> >>>

> >>> Mara, thank you for responding. I know that exercise makes me

> >>> feel better during that time of the month (though there's a day or

> >>> two where I can't move). Unfortunately it's very rarely better

> >>> enough for me to be able to function. I found a homeopathic

> >>> remedy that helps a little but the UC flare still really disturbs

> >>> me. Even when I'm exercising and getting enough calcium I will

> >>> still have about a week or more where I flare. Heh...sadly the

> >>> indicator for my period coming is my UC. The thing is, I really

> >>> want to get off all my meds but I don't think I'm confident enough

> >>> to trust I'll be alriht if I'm still having a flare every month.

> >>> And this is with being strictly (no cheats whatsoever) SCD for

> >>> many years now. Have other ladies had this problem and gone off

> >>> meds with no issues?

> >>>

> >>> As for LDN? Honestly I've only done a very little bit of research

> >>> on it and that's only because most people posting here seem to be

> >>> so excited about it but for me it boils down to one thought, " it's

> >>> another medication. " I'd like to be off all my meds. I think we

> >>> all would, right?

>

> I dunno. It's a complicated question. I think for a long time I just

> assumed I'd

> be on some form of sulfasalazine for the rest of my life - and I just

> got used to

> the idea of managing a lifetime disease rather than having some goal

> of being

> med free, even though I long suspected colazal was not doing a thing

> for me -

> at most preventing me from getting worse.

>

> Then I tried remicade, which I was also aware - if it worked - would

> be a lifetime

> thing. And I was on that for over a year - even though it was all a

> big waste of

> time and insurance money and did nothing for me.

>

> Then when I seemed to be going in a negative trajectory, symptom-wise

> (I was never in remission) I started looking for other options because I

> never wanted to be forced on prednisone. And that's when I came

> across a

> reference to SCD, after a few other things. I already knew that

> gluten was

> bad for my symptoms.

>

> And SCD is a long term commitment, too, if not a life time commitment,

> particularly in the case of UC people, since we don't have that

> peacekeeper T cell to keep bad bacteria from breaching the intestinal

> gut wall and causing the auto-immune reaction to occur.

>

> Then, after having anything but a linear reaction to SCD, it was more

> cyclical, going over all in the right direction with decreasing

> symptoms and

> other related issues, but with lots of huge bumps along the way, (for

> instance,

> my 3 month flare lasted 4 months), I added in LDN and that kicked up the

> steadiness of my recovery immensely. Now I am having a linear recovery

> and am symptom free and in remission. I dropped the colazal completely

> one day (6-9 pills a day no more) to no ill effect, confirming the

> fact that they

> didn't do sh*t for me, and now I'm med free except for LDN and SCD -

> both of them working together.

>

> Last week I had a day where I had to do a public performance (which I

> find

> really stressful) after getting my period, either of these alone

> previously enough

> to give me symptoms or, back a ways on SCD, start a flare - and nada -

> not even

> bad cramps.

>

> I assume I'm going to be on some form of SCD long term - though not as

> strict as say Jodi or Marilyn - so if I'm on LDN, too, I guess it is

> not an

> issue of pride or goal fulfillment or dread of medicine for me the way

> it

> is for some people.

>

> LDN makes me feel great - it's not like any other drug I've ever taken -

> it's an endorphin kick, like the way you feel after you exercise, before

> the tiredness sets in afterwards, and the way that raises your whole

> sense of well being, psychological, physical, spiritual, sexual. I

> always knew

> that exercising reduced my general achiness, I just never knew that was

> because people with autoimmune disease have lower endorphin

> levels, and that exercise kicked up the level of endorphins and

> endorphins gets rid of - negates - low level pain. I guess I also was

> not

> aware that I was probably more achy than other people because of the

> auto-immune disease. I had sort of mythologized the situation into

> a belief that because I was naturally athletic, I was more sensitive

> than others

> about the fact that I needed to keep on exercising to feel good.

>

> So, for me personally, exercise has always been part of my personal

> therapy, which I maintain. LDN is medical therapy in the exact kind of

> direction I had long ago figured out worked really, really well for

> me. Just

> more of it, every day, through a medical intervention.

>

> I feel like my own personal goal is to feel terrific and it is still

> never to

> have to go on prednisone for gut issues - or anything else if I can help

> it. And to maintain and strengthen the remission I am now in. I care

> way more about that personally than being technically " med free " . I

> had gotten to the point before SCD where I was more than cynical about

> believing that any of the medical interventions were ever going to

> work for

> me. So it's a blessing just to be this much better.

>

> So being " med free " is less of an issue for me than it is for some

> others,

> since there is always going to be some kinds of interventions going on

> in my life - SCD, exercise, etc - because otherwise I could flare back

> up

> at any point.

>

> And the issue of whether LDN is for life or not for IBS people appears

> to

> be still unresolved - both yays and nays on that one.

>

> >>> Plus I recently had a really bad flare up and was put back on

> >>> prednisone. From what I read in one of these posts, LDN wasn't

> >>> something that should go with prednisone. I don't like the drug

> >>> (pred) but going intro didn't work this time. Ah well, these

> >>> things happen and as much as I dislike being on pred (b/c of the

> >>> side effects) it has helped me significantly.

>

>

>

>

> >>> Plus my doc is really good about trying to get me off of it

> >>> quickly. Yay!

>

> That's good at least.

>

> Mara

>