Re:Re: The Big C

[Guest guest]

Lilian

I deal with chronic C. since I have poor digestive motility due to a dysfunctional upper GI and some neuromuscular issues. I'm also thinking that the gut ecology plays a role (link with methane bacteria), but I'm still researching that aspect.... Anyway, my experience has shown me that going through periods of detoxing and healing meant an episode of more severe C despite taking a motility med. and other supplements (more on that in a moment.) So if your body is reacting as mine did, you can expect bouts of more severe C. even though you're eating the same foods as before. Good news is that things usually do improve the longer you're on SCD.

Another thing to remember is that since we're digesting our food better on SCD there is less waste to eliminate. So stool volume becomes less, which means we may not have a bowel movement every day. I pay attention to my discomfort level. I tend to miss a day here and there, but as long as I'm not getting the bloating and pain I don't worry about it.

My first two years on SCD meant a bout of severe C. every two to three weeks. I was clearly going through detoxing and healing phases. But by the end of the 2nd year these bouts came less and less often. These days (at 6 years on SCD) I do get an episode of more severe C. about once every 3 months as part of my neurological "crash" cycle, or when I happen to pick up an illegal at a restaurant meal.

Here are the basics of what will help with C.

Motility medications. I used to take low-dose Zelnorm, a motility med., but it has since been pulled from the market. I tried Amitiza, the current alternative to Zelnorm, but my body wouldn't tolerate it. Zelnorm worked by increasing serotonin; you can discuss boosting serotonin levels with your doctor; there are several supplements and anti-anxiety meds. that help increase serotonin. Amitiza works as an osmotic laxative; retains water in the stools.

Miralax is a SCD-legal option, an osmotic laxative, now OTC, safe to use over the long-term (or so my doctors state emphatically.) It is a synthetic, however. I've been on it for 6+ years, since my diagnosis in fact. I've tried several times to taper off of Miralax, but things go downhill rapidly, so I stick with it. I mix it in diluted juice or water; it has no taste that I can discern.

Increasing vitamin C helps with C. That's why the SCD prune protocol is beneficial. My body doesn't tolerate much fruit, and didn't tolerate a prune or prune juice until my 5th year on SCD, so I couldn't use the vitamin C boost to help with my C. episodes.

Magnesium also helps with C. I supplement magnesium nearly every day, partly for my C. and digestive motility, and partly for my systemic muscle cramps. I use a magnesium powder or liquid, and mix it in water. Makes me drowsy, so I generally have a glassful at night, before bed.

Staying hydrated also helps with C., as does eating a good amount of fats. Mild exercise like walking also helps with C.

I keep water enemas on hand for the really severe episodes of C. It is important not to use an enema too often or the lower GI becomes lazy. But sometimes a water enema is the only thing that will get my upper GI moving again. These days I rarely need to use a water enema more than once every 6 to 8 months; during my first 2 years on SCD it was necessary to use one every 2 months. I purchase Fleet saline enemas, empty out the contents and replace with purified water.

These are all things that helped me, and/or surfaced in my research, so maybe one or more suggestions will help you.

Kim M.

SCD 6 years

Sphincter of Oddi dysfunction 6+ years

neurological deterioration 3+ years

>>>>>>>>>

My current concern is that since being on SCD my C has worsened. I no longer have a predicatble morning BM (with the laxative) but go perhaps every other day. Starting to be a bit distended from the food collecting and not leaving the body as it normally would(unpleasant thought to say the least..:^P). Have cut way down on cheese since it's said to be constipating, no change. Before cutting out honey etc I tried Elaine's suggestion with orange juice and prunes, no effect.I'd really appreciate any thoughts/ideas!Thanks,Lilian"IBS"-C

[Guest guest]

Thanks everyone for the great input!

I have tried many of the ideas; enemas, Miralax, vitC, Magnesium etc.

I have not used any prescription medications, as I'm not into synthetic drugs

and there's never (to my knowledge) seemed to be a safe drug on the market.

However, I have noticed that low serotonin-levels (caused by winter, stress etc)

seems to make matters worse (always feel great vacationing in the Caribbean

:^)and was wondering if anyone's made the same observation, and if so, if you

have any tricks up your sleeve in that regard other than sythetic SSRIs etc? I'm

seriously considering a few visits to a tanning booth; this Chicago winter tends

to get to me a bit...

Thanks!

Lilian

" IBS " -C

[Guest guest]

Have you had your Vitamin D level checked? Are you taking

Vitamin D3?

I take 4,000-6,000 IU/day using Carlson Lab’s DDrops,

2,000 IU/drop, in saponified coconut oil.

I read you do not like drugs, like me, but I suggest LDN for the

‘winter blues’ (a.k.a. Seasonal Affective Disorder) because of the

endorphin production that it causes your body to enact. My decades long battle

with depression disappeared with the first dose of LDN, for me, nothing short

of miraculous. So even though I am taking it for Crohn’s, the mental uplift

with the extra added benefit of no more brain fog was a bonus.

I’d be careful with tanning booths as they have been shown

to promote skin cancer (no surprise there). Supplementing Vitamin D3 is a lot safer,

and your doc can monitor your levels with a blood test. Vitamin D3 is best

absorbed with calcium (so take it with your calcium/magnesium supplement).

Carol

CD 21 yrs SCD 5 yrs B12 shots LDN cream (6

mo.)

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of liliholm

I have not used any prescription medications, as I'm not into synthetic drugs

and there's never (to my knowledge) seemed to be a safe drug on the market.

However, I have noticed that low serotonin-levels (caused by winter, stress

etc) seems to make matters worse (always feel great vacationing in the

Caribbean :^)and was wondering if anyone's made the same observation, and if

so, if you have any tricks up your sleeve in that regard other than sythetic

SSRIs etc? I'm seriously considering a few visits to a tanning booth; this

Chicago winter tends to get to me a bit...

Thanks!

Lilian

" IBS " -C

[Guest guest]

Hi carol-

no, I haven't had my D-levels checked in a few years ( no insurance at the

moment ), butam taking 2000IUs of D3/day.

I juts looked LDN up, hadn't done that previously as I assumed that it was an UC

drug. Am *highly* uncomfortable with synthetic drugs, but was impressed with the

broad scope of it as well as the apparently low price. What are the

side-effects? What happens when you get off it? With IBS, does it affect

motility?

Funny drug-related story: one of my patients to whom I for some reason had

mentioned my IBS (maybe he had offered me some food?) brought me 8 pills of some

drug he was using for IBS ( not knowing how unlikely I am to take a white pill

in a green bottle :^). When I looked it up, I found out it's a drug that

*decreases* motility and hydrochloric acid in the stomach; just the opposite of

what I need..:^) I of course appreciated the sweet gesture all the same..

Thanks-

Lilian

IBS-C

>

> Have you had your Vitamin D level checked? Are you taking Vitamin D3?

>

> I take 4,000-6,000 IU/day using Carlson Lab's DDrops, 2,000 IU/drop, in

> saponified coconut oil.

>

> I read you do not like drugs, like me, but I suggest LDN for the 'winter

> blues' (a.k.a. Seasonal Affective Disorder)

[Guest guest]

I always feel better on vacation and it's usually a warm climate. However I've

always thought it was because I was drinking a lot more water and walking a lot

more. I also eat less because I'm pretty consistently on the move and I sleep a

lot better (b/c of the walking) and obviously there's less stress. Be

careful with the tanning booths though - there have been a lot of reports

recently about how bad they are for you (HUGE increase in skin cancer risk)

Stacey

However, I have noticed that low serotonin-levels (caused by winter, stress etc)

seems to make matters worse (always feel great vacationing in the Caribbean

:^)and was wondering if anyone's made the same observation, and if so, if you

have any tricks up your sleeve in that regard other than sythetic SSRIs etc? I'm

seriously considering a few visits to a tanning booth; this Chicago winter tends

to get to me a bit...

> Thanks!

> Lilian

> " IBS " -C

>

[Guest guest]

> Hi carol-> no, I haven't had my D-levels checked in a few years ( no insurance at > the moment ), butam taking 2000IUs of D3/day.>> I juts looked LDN up, hadn't done that previously as I assumed that it > was an UC drug. Am *highly* uncomfortable with synthetic drugs, but was > impressed with the broad scope of it as well as the apparently low > price. What are the side-effects? What happens when you get off it? With > IBS, does it affect motility?It is cheap; it's a generic drug, though it has to be compounded by a pharmacist/pharmacy that does compounding. Some insurance covers it. Blue Cross does, but it's not worth it to submit it because our policy charged a $40 co-pay and it was quite a bit cheaper just paying out of pocket. And especially easy if you get a 3-month rather than 1-month Rx.  Most people have no side effects except, for some, sleep disturbance when first taking LDN -- when the endorphins kick in it may wake you and keep you awake for a while, for some nights until your body adjusts; and vivid dreams. The good side effects are that because it forces your body to produce endorphins, and because that begins to regulate your immune system, it has a positive effect on other auto-immune conditions that a lot of IBD people have: like asthma, allergies, arthritis.You feel worse, often a lot worse, if/when you get off it. :-) No withdrawal or anything like that. It's not addicting. But just because your body isn't able to keep producing the level of endorphins your immune system needs without LDN's help. (It does actually create some new endorphin receptors along the way, but those receptors still need the endorphins to "recept," if you know what I mean.Interestingly, if LDN gradually seems to become LESS effective you probably need LESS of it, not more. Some people, especially if you don't have an efficient liver, do well on less than the standard 4.5 mg dose and a higher dose accumulates in the tissues. (I went down to 4 mg from 4.5 and that works better for me; I also take milk thistle every day to help my liver efficiency; and taking alpha lipoic acid as well is a very good thing to do.) Some people find LDN somewhat constipating. Again, that's not universal. And it isn't a bad thing if you have constant diarrhea, but is annoying if you don't!  In that case you'd have to go the lemon juice route, or eat more other foods that help prevent constipation. I have Crohn's and always had diarrhea, so I can't say I had that problem. One other thing: one of my most debilitating symptoms of Crohn's was fatigue; constant, bone-wearying fatigue, for YEARS. That left me five days after I started taking LDN. n-- Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere

[Guest guest]

Isn't that exactly what withdrawal is though? I mean, to a lesser degree but

the way I understand it is that's what junkies go through. Their bodies stop

producing the endorphins as much on their own because they rely on the drugs so

when they stop taking the opiates and the body isn't producing as many

endorphins so everything hurts. Again, not to the same level but that's how I

understand that kind of drug withdrawal works.

Stacey

> You feel worse, often a lot worse, if/when you get off it. :-) No

> withdrawal or anything like that. It's not addicting. But just because

> your body isn't able to keep producing the level of endorphins your immune

> system needs without LDN's help.

[Guest guest]

> Isn't that exactly what withdrawal is though? I mean, to a lesser > degree but the way I understand it is that's what junkies go through. > Their bodies stop producing the endorphins as much on their own because > they rely on the drugs so when they stop taking the opiates and the body > isn't producing as many endorphins so everything hurts. Again, not to > the same level but that's how I understand that kind of drug withdrawal > works.> StaceyNo, it's not a "withdrawal" because LDN is not addicting. Maybe we're arguing semantics here. To me "withdrawal" indicates symptoms you get when you abstain from something addicting. You may get symptoms when you stop it like you would if you have muscle spasms and stopped taking the creatine you need, or if you stop taking specific vitamins or amino acids and get certain symptoms because of it -- because your body doesn' have enough of whatever it is you need. But that's not "withdrawal," at least not in most people's definition I doubt it would be.n -- Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere

[Guest guest]

Stacey,

I agree with n. My brother was an addict for years, and it definitely

isn't the same. Once an addict gets through withdrawal, they are fine because

the body has finally managed to stabilize itself without the drug, just like it

initially was forced to stabilize itself with the drug. With drug withdrawal one

experiences hallucinations, severe shakes, sweating, convulsions, vomiting etc.

None of that happens with Naltrexone.

Naltrexone isn't adding anything to the body. It simply temporarily blocks the

body's own receptor sites for the body's own endorphins (like wearing sunscreen

to block too bright sunlight). The body itself responds to this by producing

more endorphins, then the naltrexone's blocking of the receptor sites wears off

and the body's own endorphins are 'recepted,' taken up, and used by the body

(like the body handles sun exposure a little better once it has a tan). I do

think, logically, that if the body itself adapts by creating more receptors of

the endorphins, it will also create more endorphins -- provided that the body is

working completely as intended.

'Completely as intended' means all the body systems are working -- balanced

hormones, balanced enzymes, adrenals, etc. I think the reason people stay on

LDN for an indefinite period is because as we age, our body systems naturally

begin to work slightly less perfectly and the LDN helps keep it better on track.

The body is very adaptable. For example (in the case of a woman), when we are

stressed, the body will steal available progesterone to convert it to steroids

to be used to feed the 'fight or flight' stress response. It is like it

figures, if I need to fight or flee, who needs to worry about fertility? And

then a woman will begin to experience fertility problems if it goes on long

enough. The problem is that the body was not designed to continually be in a

stressed state. That is why stress can easily affect autoimmune suffering

people. Their bodies are already so stressed from the illness, that there is

nothing in reserve for the fight or flight response and it can't cope.

The naltrexone simply assists the body by helping maintain a stable

repair/immune system which in turns allows the rest of the body's systems stay

better stabilized. When LDN is taken away, the body doesn't have a withdrawal,

it just has to readjust it's homeostasis process to work without the help of the

LDN. After years of using LDN, logically, the body would be in good working

order provided you are living a healthly lifestyle, and without the LDN, it

would simply revert to how your body specifically copes with your specific

circumstances, genetics, and age. It would be akin to adjusting to 1 more or 1

hour less of sleep per night. You adjust to a little less sleep, but know that

you do/feel better with a little more sleep. You adjusted a little better with

less sleep when you were younger, and although you can adjust o.k. when older,

you feel it more than when you were younger.

Clear as mud, right?

Amelia

Husband UC 9 years, SCD 18 months

LDN 3mg

>

> > You feel worse, often a lot worse, if/when you get off it. :-) No

> > withdrawal or anything like that. It's not addicting. But just because

> > your body isn't able to keep producing the level of endorphins your immune

> > system needs without LDN's help.

>

[Guest guest]

You got energy that fast? I've been taking LDN for about 3 weeks, and have none

:-(

Holly

Crohn's

SCD 12/01/08

>

> One other thing: one of my most debilitating symptoms of Crohn's was

> fatigue; constant, bone-wearying fatigue, for YEARS. That left me five

> days after I started taking LDN.

>

> n

[Guest guest]

Holly - how is your yeast level?

I've been experiencing low energy as well, among other things,

and finally put together that it was very likely that the steroids I

took for 3 weeks for my sinus condition probably spiked

my yeast, which is why the LDN is working much less efficiently

than before that whole incident.

Something to look into.

Mara

> You got energy that fast? I've been taking LDN for about 3 weeks, and have

none :-(

>

> Holly

> Crohn's

> SCD 12/01/08

>

>

>>

>> One other thing: one of my most debilitating symptoms of Crohn's was

>> fatigue; constant, bone-wearying fatigue, for YEARS. That left me five

>> days after I started taking LDN.

>>

>> n

>

>

>

> ------------------------------------

>

>

[Guest guest]

I don't know for certain. Whenever I've done the spit test, it's come back

" negative " for yeast. I eat about 110g of carbs a day, and take coconut oil and

garlic oil. I was hoping that would be enough to combat yeast, but maybe not. I

may add in a couple other yeast killers.

On the bright side, the overwhelming fatigue I was experiencing has gone away

now that I dropped the LDN to 2 mg.

Holly

Crohn's

SCD 12/01/08

>

> Holly - how is your yeast level?

>

> I've been experiencing low energy as well, among other things,

> and finally put together that it was very likely that the steroids I

> took for 3 weeks for my sinus condition probably spiked

> my yeast, which is why the LDN is working much less efficiently

> than before that whole incident.

>

> Something to look into.

>

> Mara

>