Re: OT- questions for surgery

April 15, 2009

Hi Jodi,

I think I understand your concerns about having surgery. (I’ve

had two small-bowel resection surgeries.) No one likes to have to submit to

that, obviously. I also understand why your doctor is saying what’s he’s

saying. They just can’t know the whole story/see the whole picture until they’re

actually looking at it on the inside.

I’m missing at least 5 feet of my small intestine and I don’t

have short-bowel syndrome. I do, however, need to give myself regular B-12

shots, since the part of the small bowel that can absorb it is gone. That’s no

big deal.

Though you’re feeling pretty well now, you may – undoubtedly will

-- feel a whole lot better after you recover from the surgery, also in terms of

peace of mind. I think if it were me, and I knew I had a stricture, I’d want it

gone, as they can cause complications. But obviously you have to decide that

for yourself.

I’ve also been quite sensitive to anesthesia and had bad

experiences with it before I realized that. But there are so many kinds now,

and there’s an awareness among medicos that a lot of people are

sensitive to it. Tell the anesthetist about every concern you have: about

things you react to, things you’re afraid you’ll react to, also about the rash

after the colonoscopy, and get him/her to explain the different anesthesia

options, and why he thinks a particular one would be good for somebody like

you. Same with pain medication, if you know you react badly to any of it, or

think you will. That’s something that can also be addressed if you don’t react

well to a particular one when they start giving it to you after the surgery. Just

ask as many questions as you have, and don’t let them shut you up until you

have answers to your satisfaction! J

Best wishes to you.

n

From: BTVC-SCD

[mailto:BTVC-SCD ] On Behalf Of jodah235

Sent: Wednesday, April 15, 2009 12:56 PM

To: BTVC-SCD

Subject: OT- questions for surgery

So it is pretty unanimous that various docs

agree I need surgery.. Being me, I still have not made up my mind. It feels

like the right thing to do but perhaps I won't know or have that

" complete " feeling until just before, the wee end or when all of this

is behind me.. It was explained to me that Crohn's strictures really don't get

any worse and they don't know how I am walking around functioning! I am like

screaming in my head " DIET PEOPLE WHAT IS SO FRIGGEN HARD TO UNDERSTAND?!?!!? "

I met one surgeon that was very nice and also super supportive of my dietary

needs. I am meeting another tomorrow for a second opinion. Anyway the first

said they would remove about 2.5 feet of insides in total, he would not answer

my question about how much of my small bowel he would remove as he cannot

answer until he is inside which concerns me as I think I rather die than have

Short Bowel Syndrome. He actually said to me " Jodi, this is where you are

going to have to put your trust in me and my experience and let ME decide "

He said he would not want to compromise me or any patient's quality of life and

out of thousands of procedures for Crohn's and Ulcerative Colitis (he deals

with CD and UC %90 of the time, the other %10 is bad IBD and diverticulitis)

Anyway out of thousands he has only had 2 patients that had short bowel. He has

done more than a thousand procedures for what I need alone. This is apparently

supposed to be way impressive.

Anyway, I am concerned with the Anesthesia and Pain medicine care. So, he told

me I can talk to the anesthesiaologist and the pain medicine doctor.

I don't have the best track record when it comes to medical stuff. The

colonoscopy anesthesia went over well although right after I got a huge rash on

my left side that is still there. The propofol is in a soy base and I wonder if

that is what I reacted to?

Anyway, what kind of questions should I ask an anesthesiologist?

I wish I could get my own hospital room too. Is that even possible?

I hope the diseased part of my small bowel can heal on this diet. From what

they saw on the pictures the disease isn't a concern at this point. The

strictures are an immediate threat.

On a good note the surgeon thinks the mass might be tissue build up due to

stricturing but he cannot know for sure due to no picture or biopsy. He also

said that at the state I am in I am a breeding ground for Pre-Cancer regardless

of this mass. I wonder if " they " are using fear tactics to get me on

the operating table?

He answered all of my questions- he just went all vague about my small

intestine.

Sorry about all of this crazy saga- I rather not take up too much time about my

sob story. The good news is that even in my state the diet has been pretty

miraculous to keep me going pain free and functioning- none of them understand

how this is possible and dismiss it as yet " another one of those Crohn's

mysteries " WHATEVER!!!!!!!!!!! Amazing considering the mess my colon is

in.

I really did not think it was this bad or that I would be here.. contemplating

this.. having all kinds of existential questions and also going to a lawyer so

if I don't wake up my wishes will be met.

Sigh.. Who knows if I am strong enough..

Jodi

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06:34:00

April 15, 2009

Jodi,

First -- never doubt your own strength. In the face of something so

terribly overwhelming as major surgery, it can be entirely too easy to

doubt -- to doubt yourself, your family and friends, your

doctors.

We as SCDers work very, very hard to gain control of our environment and

our bodies. We don't allow anything to get in the way of our healing

process. We are stubborn beyond belief when it comes to trouble shooting

our issues, whether it's my gut-and-obesity problems, or Kim M's

Sphincter of Oddi issues, your need for pastured, home ground meats and

so forth, or the more " garden variety " IBD/IBS issues which are

no less traumatic and overwhelming to those afflicted with them.

Then, out of the blue, we are handed a situation in which our hard-won

control is ripped away. Not only are we not able to control things, we

are told we should not even try.

That's purely, totally, petrifying.

Last year, in February and March, and the first week of April, I spent an

awful lot of time alternating between profound depression, crying, and

sobbing, and frustrated rage, screaming and pounding my fists on my

thighs. At the root of it all was fear.

Fear of the anesthesia.

Fear of my reaction to anesthesia.

Fear I wouldn't wake up from anesthesia.

Fear that even if I did wake up from anesthesia, " it " would

have done something to me that was irrevocable.

Fear of the surgery.

Fear of not knowing what would be done to me.

Fear of not knowing what the ultimate results would be.

Fear of not knowing what the lab tests would show. I knew I had the

endometrial cancer. But had it spread? The colon is one of the first

places cancer spreads to from the uterus.

Fear of whether or not I would react to the drugs.

Fear of not having the right kinds of foods available, and being forced

to choose between fasting and eating illegals which would make me sicker

than the proverbial dog.

Fear of not knowing how I would cope once I was released from the

hospital. Had I prepared enough food? Would Harry be able to fill in the

gaps? How was I going to manage such ordinary thing as getting out of

bed, walking to the bathroom, getting onto the stupid toilet -- and then

getting off the toilet?

In short, I was dealing with so many fears it was overwhelming trying to

just prioritize things.

One thing you have to understand -- and I think you DO understand it,

even whole wishing like many of us that it wasn't so -- is that

specialists are specialists because they focus on one thing.

Your surgeon, with that much experience, knows surgery. As such, he's

right -- in terms of the surgery, you will have to trust him. With that

much surgery experience, he's likely to be trustworthy.

Your doctors don't understand about diet because they haven't been

educated about it. Remember, that healthy food without all the processing

add-ons is not profitable. Remember that if we go around curing ourselves

with diet and exercise, we won't need as much of Big Pharma's highly

profitable medicines.

If you can educate them, fine. But don't beat your head against the wall

in frustration because they just don't get it.

You, have, however, the ability to stay in control of the situation as

far as your food, LDN, and any supplements you may take.

I had to make a special appointment with my surgeon to go over all

this.

We discussed my supplements -- what they were for. I also had research

showing which might be an issue with surgery. She indicated which ones

she wanted me to omit for a period of time before the surgery, and gave

me some medications which would compensate for them, which effects she

knew would not interact inappropriately with the medications she intended

to prescribe. (Example: the salmon oil I use as an anti-inflammatory, and

the Vitamin E can have a blood-thinning effect. With abdominal surgery,

she would be giving me a blood thinner to prevent clotting, and she did

not want a cumulative effect between what she would be giving me, and

what I was taking.)

For the hospital, I went with things like powdered Vitamin C which I

could stir into water for a clear liquid drink, as the C can help

inflammation. I also got some of the BodyBio liquid minerals, like zinc

to help with healing. Likewise, taurine and bromelain for healing and

reduced inflammation.

We discussed my food -- the fact that I would be on nothing by mouth for

at least 24-48 hours after the surgery, then clear liquids, then thick

liquids, then soft foods, and finally normal foods. I gave her the list

I'd prepared of foods I planned to prepare, and she took a copy of it to

include in my record. I also gave a copy of it to the admissions staff,

and Harry had about 25 copies in my suitcase, literally one for every

nursing shift for every day I was going to be there. (We didn't need

those, but as Harry said, " We have them if we need them! " ) My

surgeon wrote in her orders that Harry would be bringing my safe food,

and gave us a copy of it, in case there was a glitch in the transmission

of things.

Remember: your surgeon does not have to believe in the diet. Your surgeon

only has to understand that you believe in the diet, and that this is the

way you will eat.

WRT to the propofol being in a soy base, it's possible you reacted to

that. But it is more than likely that you reacted to something in or on

the hospital gowns and in or on the sheets and blankets.

Touro Hospital allowed me to bring my own sheets, blankets, pillows, and

hospital gowns if I wanted.

And yes, you should be able to have a private room if you want one. Touro

Hospital even brought in a sectional couch for Harry to sleep on so

that I was not alone at night. (My sister came down the day after

the surgery and would stay with me while Harry went home to shower,

change clothes, and feed the dachshunds.)

In talking to the anesthesiologist, write down (so you don't babble --

it's real easy to babble when you're scared) all your questions and

thoughts.

Let him/her know all reactions and sensitivities you have had or

currently have to medication. Let him or her know about things like I had

with not detoxing from the anesthesia, and other reactions. Let him/her

know about your fears.

When talking to the pain management doctor, be sure to let them know that

your concern with the pain meds is not only the active ingredient in the

medicine and your reaction to it, but your reaction to the so-called

inactive ingredients in oral medicines, such as the lactose in

prescription Motrin and all the sugars and starched that were in the

opiates I was given right after the surgery. (Mind you... I had no

hassles with the IV pain meds. Just the dratted pills.)

I hope the diseased part of your small bowel can heal, too... certainly,

you're doing so much better than any of the medical personnel give credit

for, but we know that proper nutrition can work miracles.

The plastic surgeon who did my panniculectomy was amazed at how

completely I healed. No infection. No wound opening. Just... healing. The

last time I saw him, he mentioned that he and my oncologist had done two

more procedures like mine, and neither of the women was doing as nearly

as well as I had done. I smiled, and told him, " Diet,

exercise, and supplements. " He looked at my diet, and said HE

couldn't manage something that strict!

And remember my mentor -- a gut like " bloody lace, " and 14

months later, no lesions. She was fortunate, however, not to develop the

strictures you have... but there's no reason why SCD cannot give you

tremendous healing once those are dealt with.

I'm glad to hear that the surgeon thinks the mass may not be " the

big C " after all... but I'm inclined to think that it's not fear

tactics. It is a matter of statistical fact that people with gut issues

are more at risk for bowel cancer -- the fact that he's telling you it's

a risk, rather than handing you the " Booga, booga, you must have

this procedure at once because it IS cancer... " when he does not, as

he says, have bipsies or scope data suggests that he's concerned, but not

trying to terrify you.

I suspect the reason he's vague about your small intestine is because he

honestly does not know.

>> The good news is that even in my state the diet has been pretty

miraculous to keep me going pain free and functioning- none of them

understand how this is possible and dismiss it as yet " another one

of those Crohn's mysteries " WHATEVER!!!!!!!!!!! Amazing considering

the mess my colon is in. <<

Once again -- it's because none of them have been educated to expect

NUTRITION to do anything. It's not their fault. I just wish there was

some way to do appropriate studies on SCD, so that we could point to them

and say, " See? "

It's a bit like the Mutaflor. Everyone on the board was impressed by the

fact that there were double-blind studies on it. Now, I'm not picking on

the Mutaflor, because the information on it does look impressive, and if

it weren't so bleeping expensive, I might be tempted to try it myself.

But the thing everyone focused on was, " It's been

STUDIED! "

Hard to do that when everyone's dietary needs and tolerances are

different.

I think one of the most frightening things in the world was signing a

power of attorney for Harry so that if something went wrong, he would

have the right to end my life. The thought that I was laying yet another

burden on him. Not to mention doing the will business.

You're not pouring out a sob story -- you're pouring out your fears,

concerns, and your life to people who care about you, who will be praying

for you, and sending all the best healing wishes to you that they

can.

And if your husband doesn't post how you are to us, I'll have to send

someone after him and whack him over the head for worrying us!

You are strong. Never doubt it. Never doubt yourself.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

April 15, 2009