Total relapse

[Guest guest]

Hi Group

I need some advice. I'll explain my history first, then my questions.

I've had moderate to severe UC for 4 years. Started with Asacol and

various enemas, none of which were effective. Went on to Prednisone

and after trying to wean off of this 3 separate times, was also put

on Imuran so that I could get off the prednisone finally. During that

time I had started the SCD a couple of times and stuck with it for 4-

6 months each time then gave up after seeing no results. I started

the SCD a third time 11 months ago when I was weaning off Prednisone

and when I started Imuran. After 3-4 months I started seeing results,

which I thought was the diet because I proceeded a lot slower through

the stages and it took me about 8-9 months to get to stage 4/5. Now I

realize it was the Imuran that put me into remissision for the first

time since my diagnosis. I stayed on Imuran for 10 months and then

weaned off of that after successfully finally getting off Prednisone.

Now, 3 months after being off all my meds ALL of my symptoms have

returned in full force even though continuing strict on the diet.

Went to my GI doc 3 weeks ago and he gave me scripts for Prednisone

and Imuran again, but at the time my symptoms were not quite as

severe as before (I could lead a fairly normal life & routine) so I

tried suppositories and enemas until now. This is not working. I had

2 days of lots of blood, so I went back to the intro. This is my 5th

day on it and the blood is gone now, but instead I have very watery

diarrhea and urgency and many more trips to the bathroom each day.

I'm getting worse each day instead of better. My GI doc said to start

on the Prednisone and Imuran once my symptoms got to the stage where

I couldn't handle my symptoms anymore and not to wait longer than

that.

My question is could my increase in symptoms be because of being back

on intro and my body adjusting or are things just going to get worse

and worse until I'm back on my meds. Like I said I've been strict SCD

for almost 1 year and am committed to try it for 2-3 years until I

decide if it's working for me but should I go back on the drugs

again? If I do, my doc said I should stay on the Imuran for 2 years

(this time I could try a lower dose of 50 mg/day instead of the 150

mg I was on). The long term effects of these drugs really scare me

but I also know I can't lead a normal life with my symptoms the way

they are. I have 2 very active boys and need to keep up with my life.

What should I do? I'm totally discouraged.

Thanks

Deanna

UC 4 years

SCD 11 months (3rd attempt)

[Guest guest]

> Hi Group

>

> I need some advice. I'll explain my history first, then my questions.

> I've had moderate to severe UC for 4 years. Started with Asacol and

> various enemas, none of which were effective. Went on to Prednisone

> and after trying to wean off of this 3 separate times, was also put

> on Imuran so that I could get off the prednisone finally. During that

> time I had started the SCD a couple of times and stuck with it for 4-

> 6 months each time then gave up after seeing no results. I started

> the SCD a third time 11 months ago when I was weaning off Prednisone

> and when I started Imuran. After 3-4 months I started seeing results,

> which I thought was the diet because I proceeded a lot slower through

> the stages and it took me about 8-9 months to get to stage 4/5. Now I

> realize it was the Imuran that put me into remissision for the first

> time since my diagnosis. I stayed on Imuran for 10 months and then

> weaned off of that after successfully finally getting off Prednisone.

> Now, 3 months after being off all my meds ALL of my symptoms have

> returned in full force even though continuing strict on the diet.

>

> Went to my GI doc 3 weeks ago and he gave me scripts for Prednisone

> and Imuran again, but at the time my symptoms were not quite as

> severe as before (I could lead a fairly normal life & routine) so I

> tried suppositories and enemas until now. This is not working. I had

> 2 days of lots of blood, so I went back to the intro. This is my 5th

> day on it and the blood is gone now, but instead I have very watery

> diarrhea and urgency and many more trips to the bathroom each day.

> I'm getting worse each day instead of better. My GI doc said to start

> on the Prednisone and Imuran once my symptoms got to the stage where

> I couldn't handle my symptoms anymore and not to wait longer than

> that.

I'm sorry to hear that you are doing worse.

First, remember that healing on SCD is cyclical rather than linear.

So the

fact that you moved ahead and then fell back - while frustrating and

discouraging - is not unexpected.

IME, once a UC flare starts it can takes weeks or months to get over

it - and

to get back to the better state one was in before -

and it can cycle through various stages - from blood to D, etc. The

effects

of two days of lots of blood, brought on by some part of the vicious

cycle

renewing itself is not going to be resolved immediately by

a few days of intro diet unless you are PD lucky. It can trigger off

a whole

set of events, like D, etc. You have to let your mind realize how

sensitive

your gut is - which is tough. (Sometimes - the ego gets in the way - we

start feeling a lot better, symptoms get much better or go away and we

start feeling we'll be immune to the effects of various foods we are

introducing and become more a bit more cavalier - only to suffer a

relapse.)

Second, do you have any idea what caused the blood? Something

you ate? A 3 month flare, etc? A slow decline into full symptoms?

If so, maybe something you were eating helped restore the vicious

cycle, because it was still too advanced, or you were eating too much

of it - and it was allowing a bacterial overgrowth to flourish - even

though

it didn't have an immediate effect.

Third, remember Elaine says it's okay to use the drugs when

you need to on SCD, and that SCD is not a replacement for them.

Fourth, why do you now think that SCD didn't help you - and that it

was only the imuran? How do you know that it wasn't the combination

of the two of them?

Fifth, are you taking anything additional - like vitamin E

suppositories,

oral vitamin E, vitamin D3, circumin, anything else to support your

immune system?

> My question is could my increase in symptoms be because of being back

> on intro and my body adjusting or are things just going to get worse

> and worse until I'm back on my meds. Like I said I've been strict SCD

> for almost 1 year and am committed to try it for 2-3 years until I

> decide if it's working for me but should I go back on the drugs

> again? If I do, my doc said I should stay on the Imuran for 2 years

> (this time I could try a lower dose of 50 mg/day instead of the 150

> mg I was on). The long term effects of these drugs really scare me

> but I also know I can't lead a normal life with my symptoms the way

> they are. I have 2 very active boys and need to keep up with my life.

> What should I do? I'm totally discouraged.

Maybe you went med free too early - and you should have just reduced

your meds to very low maintenance doses for a longer period, not

gotten off of them entirely.

Are you eating yogurt/probiotics? (Not now - before the flare)

Where are you in your cycle?

Mara

[Guest guest]

After my own most recent flare ( similar watery D) I got back to

taking Vit D3 and things got better - so I agree- supplements are

important.

-susan

cd 2 yrs 3 months

imuron and asacol

vit d3 and b12 and zinc

Fifth, are you taking anything additional - like vitamin E

suppositories,

oral vitamin E, vitamin D3, circumin, anything else to support your

immune system?