Re: Have to get colon fully removed in next few weeks

[Guest guest]

>

> Hi,

> I was with my gastroenterologist yesterday and its decided i need surgery. Ive

been very unwell for over a year now and my weight has dropped rapidly in the

past couple of months im only 6 and half stone. Ive tried scd and LDN for a

month now but time is against me and im too sick right now to give the SCD

anymore time and hope things get better, My situation is that no drugs have

worked for me in 2 years and ive been on prednisilone way too long and right now

there not even working to stop my diorreha and weight loss. Its too dangerous to

get such a big operation when my weights low as the risks of complications are

higher and i dont want that. My whole colon and rectum are where my disease is

so they will be fully removed and il be on a stoma bag for life as it cant be re

attached. Its hard to accept but i have no choice or i will risk as my

gastroenterologist said possible death if i dont get it done. i will continue

scd as much as i can but after the operation il be in hospital recovering for a

few weeks id say and it will be impossible to eat scd while in there.

>

> My hope is that when i recover and gain my weight back i want to restart SCD

and stick to it for life so my chrons does not return in my small bowel ever.

>

> I'd like to know what people think or have they had this happen to them as i

could do with some advise, Thanks Mark

>

Mark,

I don't feel that I can advise you, since we are so different in how we're

affected by Crohn's and how we respond to treatment. I can only tell you my

story for what it's worth.

I had been sick for a very long time before I finally got an accurate diagnosis.

I had severe Crohn's Colitis, with the inflammation limited to the colon. I

don't understand why it's this way, but the doctor told me that when the

inflammation is severe it usually affects nutrient absorption. In my case it

appeared to be total, even though the Crohn's didn't extend to the small

intestine.

I was hooked-up to two IV's. There was one for nutrients and one for High doses

of steroids. It took this arrangement three weeks to calm the inflammation

sufficiently so that my digestion could begin again. When I left the hospital I

continued with oral prednisone, beginning at 60 mg per day. What a moon face I

had.

For the last week the chief of gastroenterology at the hospital insisted that I

let him take my colon, and that I would never have relief unless it was removed.

He also told me that it didn't matter what I ate and that there were no bacteria

involved in the disease. It was an auto-immune disease with the cause unknown.

If he hadn't told me the last part, I would have been more willing to believe

the first part.

I was discharged with my insides intact and restarted SCD. As the SCD did its

thing, I tapered off of the prednisone over a period of months, and gradually

added natural antibiotics like lactoferrin and monolaurin which disrupt the

biofilm that protects the bad bugs.

It took eighteen months of SCD and supplements to get to these bacteria that

weren't supposed to exist, and I've been free of Crohn's for over ten years.

Whatever you decide to do, I pray that it will be right for you and that you

will see a return to excellent health.

Les

[Guest guest]

Jodi, that's the one thing that really worries me every time I take LDN. I was

lucky and stopped taking it when I had a pain scare a couple months ago, because

a week later I had really severe pain that required a percocet. Ever since then,

I've been gun shy, and skip the LDN if I have even a little twinge of pain.

Glad to hear you were able to start LDN again though!

Holly

Crohn's

SCD 12/01/08

>

> ,

>

> I myself was in this situation and pain management was difficult.

> But the pain meds eventually worked I just needed a higher dosage.

>

> I just wish more docs understood LDN.

>

> I was in this situation twice with ER stuff and once with ileocolic surgery.

>

> The ER situations were challenging but I got through it due to me explaining

to my hubby that explained to the ER docs how LDN works.

>

> With the surgery I should of stopped 3 weeks before hand (for me) I think for

the pain meds to kick in well. I think it kind of accumulated in my system.

But I am sensitive.

>

> I am back on LDN and feel great! I would of been in a terrible full fledged

flare due to this water bacteria I caught. LDN has truly helped me fight it.

>

> My first try on LDN I had to work through active Lyme disease co-infections-

so I had some pretty wonky symptoms as a result (which made me treat the Lyme

stuff) and made my thyroid go all wacky.

>

> Now, I am on LDN again- staying on 3.5mg daily and I have none of those

symptoms including my hypothyroid only getting stronger which is lovely.. I

adore LDN.

>

> I think there is a little too much noise about LDN and pain management idea.

Having been through some pretty awful scenarios myself.

>

> Jodi

>

[Guest guest]

Boy, I could have used a wedge pillow! Instead, I just had a rolled up towel to

somewhat support me. I abhor sleeping on my back, so it was worth the effort to

get situated with the towel. Thankfully, it wasn't too long before I could

carefully ease onto my stomach.

I also second the pillow for the drive home. Made things much easier!

Holly

Crohn's

SCD 12/01/08

> >A few things you may want to also consider is

> >getting a 12 inch wedge pillow to sleep on so

> >that you don't have to sleep flat and also some

> >support bars for the shower / bathtub (some of

> >the suction ones are pretty good).

>

> Raj,

>

> I'm glad you mentioned that wedge pillow! I

> bought one just before I went to the hospital,

> and it proved incredibly valuable!

>

> The suction grab bars are OK... and may work for

> people who are less than normal weight. I'm not,

> and I'd had experience with them letting go just as I needed them.

>

> http://tinyurl.com/2462t9k

>

> should be a list of the Superpole items at the

> place I bought them from. I got the Superpole

> with trapeze for next to my bed, and the

> Superpole with superbar for next to the toilet

> and the shower. (I have a counter on the other

> side of the toilet, so could use that to help me up.

>

> Something else which is incredibly valuable is a

> small pillow to clasp over your stomach when in

> the car. Put it between you and the seatbelt,

> over your incision. (My incision was 24 "

> long....) Getting home from the hospital was

> possibly the hardest car trip I've ever taken,

> because New Orleans streets are very bouncy, and

> every jounce really, really hurt.

>

>

> — Marilyn

> New Orleans, Louisiana, USA

> Undiagnosed IBS since 1976, SCD since 2001

> Darn Good SCD Cook

> No Human Children

> Shadow & Sunny Longhair Dachshund

> Babette the Foundling Beagle

>

[Guest guest]

Mara,

I love it when you go on rants.

Cracks me up!

So true.

Jodi

> > > >

> > > > Thanks Mara. Here's the thing -- I don't want to leave my current Dr.

He's very good and supportive of SCD -- he just doesn't buy into some of the

alternative meds/supplements.

> > > >

> > > > Do you think I could still get this script and keep him?

> > > >

> > > >

> > >

> >

> >

> >

> > The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with

Hotmail. Get busy.

> >

> >

>