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]

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'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'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 hadn't changed anything in my meds in over a year when my flare happened

(lialda 1x/day, Ranitidine 1x/day).

Stacey

>

> 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

>

>

[Guest guest]

I hadn't changed anything in my meds in over a year when my flare happened

(lialda 1x/day, Ranitidine 1x/day).

Stacey

>

> 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

>

>

[Guest guest]

The reason I asked about meds is that Elaine never said to stop meds, but some

people do, and do just fine, and some don't. It's so individual, and as I see,

so is the diet. From what I see, some can eat illegals after two years, some

never can, and so on- it's so individual. Don't we wish there was something that

would prevent all flares forever? The only thing I can conclude is that we are

far better off on SCD than without it, for without it- there would likely have

been more flares. I am so sorry to hear people going through this after so long,

but it still looks like the flares are infrequent. I do hope you recover soon.

LDN looks promising, and for those who are lucky to have a physician that

supports it, it could be helpful.

Hope you are better,

PJ

> >

> > 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

> >

> >

>

[Guest guest]

I lived in France for two years and you're right that French bread is awesome. I lived for my chocolate croissant every morning and my baguette with pate in the afternoon - ooh la la! My doc told me the first time she saw me to get off gluten, grains and milk and sugar. She didn't know about SCD but it was her theory that those were bad for me. I didn't listen. She gave me Rx for flour subsitutes you can buy in pharmacy or get for free actually. All of my probiotics and vitamins were free. She prescibed magnesium, b6 and probiotics. I paid nada, zip! She was a great doc and she was only my GP. French medical care is beyond great, it's unbelievable! If you have a colonoscopy and you live alone they make you stay overnight so you won't be alone in case there is a complication. If you need to have a medical exam and you don't drive they send a medical car to pick you up.

They think of everything. House calls are the norm. Every aspect of a persons live in considered in their treatment. Unbelievable, and it was all free.

Ann,

Living in Italy

Undiagnosed Crohn's since 1977 Diagnosed 15 years

Sacroiliitis 25 years

Rheumatoid arthritis 25 years

Pyoderma Gangronosum 2 years

SCD since July, 2008

Meds: None

To: BTVC-SCD Sent: Friday, August 21, 2009 11:50:22 PMSubject: Re: Die off after 1 yr and 3 months?

I commend you for SCD in France- the ultimate temptation is French bread and patisserie. Please keep us posted on how you are doing. How do the French doctors treat IBD?PJ

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