Re: Getting worse?

[Guest guest]

Meghan,

I think inflammation can wax and wane, so I would ask the doctor about " getting

worse " . I think the most accurate is that it is still there. You also had flares

and anemia which would support this.

I think the bigger question is did SCD help you? Perhaps you would have been in

worse shape without it. This is something we will never know. This kind of news

is scary to you and to all of us on SCD, but no treatment exists for 100% of

people 100% of the time. Medication does not even do this. Perhaps some people

need a longer course of SCD. Without controlled studies- there is no real answer

to this. We all judge it by how we feel.

I think it would be fair to say that a year and a half of anything may not undo

11 years of illness. It is not a failure to be on medication and SCD- many of us

are. I think SCD is a tool to feeling better and having a better quality of

life, and only you can decide if it has done this for you, and I hope it has. We

all are on SCD in this same position, hoping and praying for a good outcome.

PJ

>

> Hello All--

> I've had UC for about 11-12 yrs. and have been on the diet about 1 1/2 yrs.

Had my first colonoscopy since being on scd last Friday. My doc said last time

(about 2 ys ago) just lower part of my colon was inflamed/ulcerated, and this

time it went much further. I thought I was feeling better, but now I'm not sure

if I was just hoping I was better than I actually am. I still get flares, D, B,

and have been severly anemic 2x this year already. But I've been strict with the

diet and was hoping for good news from the test. I'm really disappointed in the

test results and not sure what to do now. Doc suggested going to a UC/Chrons

specialist in NYC (she's pushing 6MP and knows I don't want to).

> I didn't ask ( was still out of it when we talked after), but does anyone know

why the inflamation would travel- besides getting worse, but is it something

that moves fairly often, and she just caught it at a bad time or does it

actually mean that it has spread and gotten worse?

> She basically told me the diet isn't working and my husband was there so now

he's skeptical too.

> I don't know what to think... :-(

> Meaghan

>

[Guest guest]

Hi Meaghan,

I don’t have UC but I have Crohn’s. At the 3 year

mark of being on SCD I had a colonoscopy which showed “scattered, active

Crohn’s”. Was I ever disappointed! At that time I was still losing

weight and still had flares with D. My experience over the years with SCD has

been that healing takes time and that it is two steps forward, one step back

for awhile. Try not to get discouraged.

I recommend you adhere fanatically to the SCD. Have you looked

into LDN? www.LowDoseNaltrexone.org

It is an immune modulator whereas 6MP kills off the immune system. 6MP

nearly killed me off! I had to stop taking it.

Hang in there! I guess some of us heal more slowly, depending on

how long we’ve been sick. Hopefully you have seen some improvements and

will continue to see more.

Carol

CD 23 yrs SCD 6 yrs B12 shots LDN cream 1 yr

From:

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

I've had UC for about 11-12 yrs. and have been

on the diet about 1 1/2 yrs. Had my first colonoscopy since being on scd last

Friday. My doc said last time (about 2 ys ago) just lower part of my colon was

inflamed/ulcerated, and this time it went much further. I thought I was feeling

better, but now I'm not sure if I was just hoping I was better than I actually

am. I still get flares, D, B, and have been severly anemic 2x this year

already. But I've been strict with the diet and was hoping for good news from

the test. I'm really disappointed in the test results and not sure what to do

now. Doc suggested going to a UC/Chrons specialist in NYC (she's pushing 6MP

and knows I don't want to).

I didn't ask ( was still out of it when we talked after), but does anyone know

why the inflamation would travel- besides getting worse, but is it something

that moves fairly often, and she just caught it at a bad time or does it

actually mean that it has spread and gotten worse?

She basically told me the diet isn't working and my husband was there so now

he's skeptical too.

I don't know what to think... :-(

Meaghan