Re: Die off after 1 yr and 3 months?

[Guest guest]

Mike, I can relate to your case and i will read answers you get with interest. I can't really offer you help because i am in the same situation. I started to flare on my 2 year SCD anniversary, at the beginning i thought it was food related and that it will go away in 2 or 3 days like it has until then but no, despite strict intro on the third day i got also blood next to my urgent D and now it will soon be 3 weeks that this is going on.

I started Pentasa when i got blood, i lost few kilos. In my case i am suspecting also hormones as i am still breastfeeding my soon to be 6 month baby. But i am getting tired by eating limited amount of foods (i am intro and few stage 1 foods) because with breastfeeding i use a lot of energy. So i hope it will end soon without the need to go to stronger medication. I also never had such severe symptomes ever since i was diagnosed with UC 2 years ago (at that time i had blood only for 1 day). I also get fatigue and stomach cramps that usualy result by going to the toilet. The frequency did diminue a little bit from 6-7 at beginning to around 4 last few days and it is less blood, 1 time per day maybe and just few drops at the end.

I was also surprised i was hit by it so strongly because i was confident my intestines were in good shape with SCD and that a flare couldn't run me down so fast. JanjaUC since july 2007SCD since august 2007

[Guest guest]

Have you looked at LDN as an option if your UC is flaring upagain?http://health.groups.yahoo.com/group/lowdosenaltrexone/Seems like a perfect time to try it. MaraMike, I can relate to your case and i will read answers you get with interest. I can't really offer you help because i am in the same situation. I started to flare on my 2 year SCD anniversary, at the beginning i thought it was food related and that it will go away in 2 or 3 days like it has until then but no, despite strict intro on the third day i got also blood next to my urgent D and now it will soon be 3 weeks that this is going on. I started Pentasa when i got blood, i lost few kilos. In my case i am suspecting also hormones as i am still breastfeeding my soon to be 6 month baby. But i am getting tired by eating limited amount of foods (i am intro and few stage 1 foods) because with breastfeeding i use a lot of energy. So i hope it will end soon without the need to go to stronger medication. I also never had such severe symptomes ever since i was diagnosed with UC 2 years ago (at that time i had blood only for 1 day). I also get fatigue and stomach cramps that usualy result by going to the toilet. The frequency did diminue a little bit from 6-7 at beginning to around 4 last few days and it is less blood, 1 time per day maybe and just few drops at the end. I was also surprised i was hit by it so strongly because i was confident my intestines were in good shape with SCD and that a flare couldn't run me down so fast. JanjaUC since july 2007SCD since august 2007

[Guest guest]

I'm a newbie to SCD and I am also watching these posts with interest as one of

the things that gets me though this is the hope for better days. I know it must

be upsetting to see symptoms return after such a long time. I can understand

that pregnancy and having a newborn puts stress on the body, but for Mike- I

don't know why. Is it possible that there might be some infection setting this

off? I do hope you both recover quickly. Please keep us posted.

PJ

>

> Mike, I can relate to your case and i will read answers you get with

> interest. I can't really offer you help because i am in the same situation.

> I started to flare on my 2 year SCD anniversary, at the beginning i thought

> it was food related and that it will go away in 2 or 3 days like it has

> until then but no, despite strict intro on the third day i got also blood

> next to my urgent D and now it will soon be 3 weeks that this is going on.

> I started Pentasa when i got blood, i lost few kilos. In my case i am

> suspecting also hormones as i am still breastfeeding my soon to be 6 month

> baby. But i am getting tired by eating limited amount of foods (i am intro

> and few stage 1 foods) because with breastfeeding i use a lot of energy. So

> i hope it will end soon without the need to go to stronger medication. I

> also never had such severe symptomes ever since i was diagnosed with UC 2

> years ago (at that time i had blood only for 1 day). I also get fatigue and

> stomach cramps that usualy result by going to the toilet. The frequency did

> diminue a little bit from 6-7 at beginning to around 4 last few days and it

> is less blood, 1 time per day maybe and just few drops at the end.

> I was also surprised i was hit by it so strongly because i was confident my

> intestines were in good shape with SCD and that a flare couldn't run me down

> so fast.

>

> Janja

> UC since july 2007

> SCD since august 2007

>

[Guest guest]

I'm a newbie to SCD and I am also watching these posts with interest as one of

the things that gets me though this is the hope for better days. I know it must

be upsetting to see symptoms return after such a long time. I can understand

that pregnancy and having a newborn puts stress on the body, but for Mike- I

don't know why. Is it possible that there might be some infection setting this

off? I do hope you both recover quickly. Please keep us posted.

PJ

>

> Mike, I can relate to your case and i will read answers you get with

> interest. I can't really offer you help because i am in the same situation.

> I started to flare on my 2 year SCD anniversary, at the beginning i thought

> it was food related and that it will go away in 2 or 3 days like it has

> until then but no, despite strict intro on the third day i got also blood

> next to my urgent D and now it will soon be 3 weeks that this is going on.

> I started Pentasa when i got blood, i lost few kilos. In my case i am

> suspecting also hormones as i am still breastfeeding my soon to be 6 month

> baby. But i am getting tired by eating limited amount of foods (i am intro

> and few stage 1 foods) because with breastfeeding i use a lot of energy. So

> i hope it will end soon without the need to go to stronger medication. I

> also never had such severe symptomes ever since i was diagnosed with UC 2

> years ago (at that time i had blood only for 1 day). I also get fatigue and

> stomach cramps that usualy result by going to the toilet. The frequency did

> diminue a little bit from 6-7 at beginning to around 4 last few days and it

> is less blood, 1 time per day maybe and just few drops at the end.

> I was also surprised i was hit by it so strongly because i was confident my

> intestines were in good shape with SCD and that a flare couldn't run me down

> so fast.

>

> Janja

> UC since july 2007

> SCD since august 2007

>

[Guest guest]

I've had a similar experience recently. I've been on the diet for something

like 3/4 years and I'm VERY strict about it. However a month or so ago I

started getting a pain in my lower left side that would shoot up through my

stomach. I ended up having a CT Scan because it was bothering me so much. By

the time I had the scan I had started to feel better. Because I was starting to

feel better they let me go home but my GI called to tell me that I might have an

intussusception (where the small intestine telescopes in on itself). It usually

requires emergency surgery but since I was feeling better they thought that it

might just be the angle at which they did the scan. Anyway, two days later I

started to have sudden, bad UC symptoms (the lower left pain went

away...or...morphed into something else). But this flare up was unlike any I've

ever had before (and I've had this stinking disease for 15 years so I know what

a flare feels like). I had the urgency, blood, D and pain. However the big

difference was that I had the pain before the urgency (it's ALWAYS been during,

never *before*)...really bad pain that was literally hitting me every 15 minutes

(30 if I was really lucky). I tried using the starter diet to get better (it's

worked in the past) but it wasn't working this time and I ended up having to

going to the ER where they doped me with morphine (my first moment's rest in a

week) and started me back on prednisone. They did another CT scan. This time

they didn't see an intussusception but it looked like my entire colon was

inflamed. I'm better now and my awesome doc is getting me off of prednisone but

we're still not sure what happened. I didn't change anything about my eating

habits or activity level. There was no sign of infection. The only thing we

can think of is that I might have had an intussusception that healed itself and

it aggravated things in my colon. I'm wondering though if that's the case since

I'm not the only one who's had this problem. In any case, be careful and watch

yourself very closely. See a doc if you need to. I should not have waited as

long as I did (I could have saved myself a lot of pain). I hope you feel better

really soon!

Stacey

>

> In the last week or so I have started suffering a pretty bad flare up of my

UC. The dates could mean it is a die off but the symptoms are different to those

I have experienced in previous die offs. As I say I have been following the SCD

strictly for a year and three months and had die offs at roughly 3 month

intervals.

>

> Currently my symptoms are:

>

> - A temperature and hot skin that seems to come and go

> - Urgent D with bright red B (I hadn't seen any B for about 2 months previous)

> - Fatigue

> - Stomach cramps

>

> I understand that these can be symptoms of a UC flare but i've never

experienced this before.

>

> It just strikes me as odd that the UC would come back after I have been on the

diet for so long. I am considering getting back on the pred but it has been a

year since I have used it so i'm reluctant to go back there.

>

> What I was thinking was that it could be some really stubborn bacteria that

are kicking up a stink and the other side of this flare could be a real

breakthrough.

>

> I was wondering if anyone had had a bad flare-up/die-off this far into the

diet or could give me any advice on what to do. I don't think i've been this ill

with the UC since it first started up 6 years ago.

>

> Thanks,

>

> Mike

>

[Guest guest]

I have a question for all of you. Were you on any meds when this happened? The

reason I asked is because some people stop their medication somewhere into the

diet, while most doctors think one should stay on medication regardless.

Thanks,

PJ

> >

> > In the last week or so I have started suffering a pretty bad flare up of my

UC. The dates could mean it is a die off but the symptoms are different to those

I have experienced in previous die offs. As I say I have been following the SCD

strictly for a year and three months and had die offs at roughly 3 month

intervals.

> >

> > Currently my symptoms are:

> >

> > - A temperature and hot skin that seems to come and go

> > - Urgent D with bright red B (I hadn't seen any B for about 2 months

previous)

> > - Fatigue

> > - Stomach cramps

> >

> > I understand that these can be symptoms of a UC flare but i've never

experienced this before.

> >

> > It just strikes me as odd that the UC would come back after I have been on

the diet for so long. I am considering getting back on the pred but it has been

a year since I have used it so i'm reluctant to go back there.

> >

> > What I was thinking was that it could be some really stubborn bacteria that

are kicking up a stink and the other side of this flare could be a real

breakthrough.

> >

> > I was wondering if anyone had had a bad flare-up/die-off this far into the

diet or could give me any advice on what to do. I don't think i've been this ill

with the UC since it first started up 6 years ago.

> >

> > Thanks,

> >

> > Mike

> >

>

[Guest guest]

I have a question for all of you. Were you on any meds when this happened? The

reason I asked is because some people stop their medication somewhere into the

diet, while most doctors think one should stay on medication regardless.

Thanks,

PJ

> >

> > In the last week or so I have started suffering a pretty bad flare up of my

UC. The dates could mean it is a die off but the symptoms are different to those

I have experienced in previous die offs. As I say I have been following the SCD

strictly for a year and three months and had die offs at roughly 3 month

intervals.

> >

> > Currently my symptoms are:

> >

> > - A temperature and hot skin that seems to come and go

> > - Urgent D with bright red B (I hadn't seen any B for about 2 months

previous)

> > - Fatigue

> > - Stomach cramps

> >

> > I understand that these can be symptoms of a UC flare but i've never

experienced this before.

> >

> > It just strikes me as odd that the UC would come back after I have been on

the diet for so long. I am considering getting back on the pred but it has been

a year since I have used it so i'm reluctant to go back there.

> >

> > What I was thinking was that it could be some really stubborn bacteria that

are kicking up a stink and the other side of this flare could be a real

breakthrough.

> >

> > I was wondering if anyone had had a bad flare-up/die-off this far into the

diet or could give me any advice on what to do. I don't think i've been this ill

with the UC since it first started up 6 years ago.

> >

> > Thanks,

> >

> > Mike

> >

>

[Guest guest]

Hi PJ and others,

I just wanted to say I hope I haven't unneccesarily worried any newbies reading

my post. From what I have seen of other's progress, this type of event this far

into the diet is not the norm.

As of yesterday evening, i've been feeling a lot better. The fever has now gone.

It was all a bit scary as i've never had a flare up like that before but I seem

to be over the worst.

I still hold on to the belief that it is a bad flare because of some really

stubborn bacteria and the promised land is on the other side!

PJ - I had been tapering off my azathoiprine and balsalazide (colazide) tablets

but had recently got back onto the meds as coming off them wasn't working out

so, I have to admit, the meds could have something to with my current issues.

Health to all,

Mike

[Guest guest]

> Hi PJ and others,

>

> I just wanted to say I hope I haven't unneccesarily worried any

> newbies reading my post. From what I have seen of other's progress,

> this type of event this far into the diet is not the norm.

>

> As of yesterday evening, i've been feeling a lot better. The fever

> has now gone. It was all a bit scary as i've never had a flare up

> like that before but I seem to be over the worst.

>

> I still hold on to the belief that it is a bad flare because of some

> really stubborn bacteria and the promised land is on the other side!

>

> PJ - I had been tapering off my azathoiprine and balsalazide

> (colazide) tablets but had recently got back onto the meds as coming

> off them wasn't working out so, I have to admit, the meds could have

> something to with my current issues.

Mike,

Have you looked into LDN as an option?

I know, too, that Kim M. has mentioned flaring at 3 month intervals or

so,

with decreasing symptoms, up until she hit the two year mark.

I certainly had some flares after the first year.

And think of it this way - once the die off symptoms go away, you'll

feel much, much better than you did before they began. I find that

dieoff always leads to leaps in health.

Mara

[Guest guest]

> Hi PJ and others,

>

> I just wanted to say I hope I haven't unneccesarily worried any

> newbies reading my post. From what I have seen of other's progress,

> this type of event this far into the diet is not the norm.

>

> As of yesterday evening, i've been feeling a lot better. The fever

> has now gone. It was all a bit scary as i've never had a flare up

> like that before but I seem to be over the worst.

>

> I still hold on to the belief that it is a bad flare because of some

> really stubborn bacteria and the promised land is on the other side!

>

> PJ - I had been tapering off my azathoiprine and balsalazide

> (colazide) tablets but had recently got back onto the meds as coming

> off them wasn't working out so, I have to admit, the meds could have

> something to with my current issues.

Mike,

Have you looked into LDN as an option?

I know, too, that Kim M. has mentioned flaring at 3 month intervals or

so,

with decreasing symptoms, up until she hit the two year mark.

I certainly had some flares after the first year.

And think of it this way - once the die off symptoms go away, you'll

feel much, much better than you did before they began. I find that

dieoff always leads to leaps in health.

Mara

[Guest guest]

Hello,I also didn't mean to discourage newcomers because the diet is definitely working, i had 2 wonderful years on it and i had a perfectly healthy SCD pregnancy and i thank only SCD to have my wonderful son because before SCD i didn't see how i could have a family at all.

As i said, i think there are many factors to my flare, firstly it coudl be hormones, secondly a stomach bug (my husband and one friend had D few days after me but only for a day. And until now my symptomes were always worse in summer especially in August, i haven't found yet what could be causing it.

So i am staying with simple SCD foods and hoping the flare will calm down without the need of stronger medication. I wasn't on medication since March 2008 (with awerness of my doctor) but when i saw blood i started to take it immediately. But no effects yet until now. It is starting to be long this flare.

I will keep LDN in mind, i have to read more about it and i live in France so i assume it would be quite difficult to get it. I am seeing my gastro on 31 august so i am hoping i will be better until then, if not we will discuss medication options.

I am also thinking that once i get over this i will be like new, able to eat bigger variety of SCD foods than i did until now. But patience is sometimes difficult :)Janja