Re: Hi Marilyn

[Guest guest]

Hi Mara, Marilyn, Eileen and my fellow SCD'ers,

Thanks for the concern but please don't worry about me too much.

I'm ok- bless this diet that due to it I snapped out of it and bounced

back. I was supposed to be admitted to the hospital but I left AMA.

I lost a lot of weight and after some house calls for IV's with liquids

and anti nausea meds I am better getting ready to go home tomorrow.

More later in the week..

I would be dead without this diet I am sure..

Marilyn, sending your mom much love and good vibes!

Jodi

[Guest guest]

Oh, Jodi, you poor thing. I am so sorry that, despite all your planning, your

trip has been so unbelievably difficult....

I wish you the gentlest possible trip home and a body that is soon feeling

better.

I admire your courage in going, Jodi. Although it didn't turn out as you hoped,

you tried, and you have my admiration.

Ellen

11 y/o dd scd since 5/06 for crohn's

med-free for six months

[Guest guest]

Thank you Ellen,

It was wonderful to see my grandparents and family.

For the trauma I experienced, it was pretty amazing that I was still functional

and able to do things while in Israel. That first week was sketchy between the

ER and leaving AMA and then having house visits with IV's for my subsequent

attacks. I must say the quality of care I received in Israel was top notch and

everyone was very loving towards me. Made many in our family question how this

could happen if the diet is so great- this was challenging for me to deal with,

this line of questioning as this diet is my choice and I am sticking to it! I

regard it as saving my life. For me, I am just trying to retrace my steps to

see what I did to trigger this?

This does not deter me from trying to do this in the future to be with my

grandparents. It was so rewarding emotionally and spiritually. My brother was

also in Israel so it was wonderful spending time with him as well.

Illegals did get into my food- how that applies to a pancreatitis attack? I am

unsure. I never had an attack like this. I was also hungry during my stay in

Israel and my doc said the worst thing for the pancreas is skipping meals, going

hungry. If the pancreas acts up than it is best to not eat. I was hungry in

Israel a lot as the kitchen was so laced with Illegals that I kind of had a lot

of fear going on.

I will know more on Monday after I see my GI.

As of now my whole RUQ feels bruised and at times it is hard to breathe

properly.

I do not think I would of been functional or really able to move if it weren't

for the SCD.

It's not fun going to a different country to experience their ER.

Thankfully, Israel has socialized medicine so it did not break the bank account

at all.

Wow, this turned into an update- your compassionate post to me just opened me

up.

Thanks,

Jodi

[Guest guest]

Jodi,

Welcome back. I read all your posts and felt very badly for you, but I wanted to put my two cents in. In all your posts you question what you did wrong to precipitate your attack of pancreatitis:

"For me, I am just trying to retrace my steps to see what I did to trigger this?"

You have mentioned it in all your other posts as well. I don't think you did anything wrong at all. I couldn't believe all the preparation you did to make this arduous journey--the food preparation, arranging everything with the outlaws and all the other behind the scenes arrangements that went into the trip. I commend you. I was so impressed with all the food you had made to bring with you.

That said--poop happens. Acute pancreatitis can be viral in nature, among other reasons--you don't know if you didn't catch something on the plane that translated into an acute attack. Just the physical and emotional stress of such a trip and everything that went into it sets you up to lower your immune defenses. Please stop blaming yourself for this unfortunate illness. I also think it's wonderful that you feel ( rightly so) that SCD helped you get back on your feet, that it has brought you to a level of health that you didn't enjoy pre-SCD and that this is what you are going to do in spite of formidable criticism and opposition from family members. We all know that no one diet or no one medicine or anything, is a cure all for all the ills we have-- yet when we see positive results, we continue despite setbacks--and this is what you have done.

Being deathly ill is bad enough at home, I can't imagine being so far from home in a strange place and getting so sick. I'm glad you're better and that you are home and continuing to recuperate. I just don't want you to continue to search for what you did 'wrong' to bring this on yourself. I think you did everything right.

Terry

[Guest guest]

I agree - don't knock yourself - youre doing great! feel better soon!!! when we

do we'll get together - flu kicked my butt followed by belly issues - put a fork

in me I'm done!!!

eileen

>

> Jodi,

>

> Welcome back. I read all your posts and felt very badly for you, but I wanted

to put my two cents in. In all your posts you question what you did wrong to

precipitate your attack of pancreatitis:

>

> " For me, I am just trying to retrace my steps to see what I did to trigger

this? "

>

> You have mentioned it in all your other posts as well. I don't think you did

anything wrong at all. I couldn't believe all the preparation you did to make

this arduous journey--the food preparation, arranging everything with the

outlaws and all the other behind the scenes arrangements that went into the

trip. I commend you. I was so impressed with all the food you had made to bring

with you.

>

> That said--poop happens. Acute pancreatitis can be viral in nature, among

other reasons--you don't know if you didn't catch something on the plane that

translated into an acute attack. Just the physical and emotional stress of such

a trip and everything that went into it sets you up to lower your immune

defenses. Please stop blaming yourself for this unfortunate illness. I also

think it's wonderful that you feel ( rightly so) that SCD helped you get back on

your feet, that it has brought you to a level of health that you didn't enjoy

pre-SCD and that this is what you are going to do in spite of formidable

criticism and opposition from family members. We all know that no one diet or

no one medicine or anything, is a cure all for all the ills we have-- yet when

we see positive results, we continue despite setbacks--and this is what you have

done.

>

> Being deathly ill is bad enough at home, I can't imagine being so far from

home in a strange place and getting so sick. I'm glad you're better and that you

are home and continuing to recuperate. I just don't want you to continue to

search for what you did 'wrong' to bring this on yourself. I think you did

everything right.

>

> Terry

>

[Guest guest]

'I heard from Dad this morning. Mom is in ICU, although she was physically still in the emergency room because they didn't yet have an ICU bed for her. She was given a unit of blood, which suggests that her hematocrit must have been quite low, and Dad said her BP was quite low most of the night -- like around 80/45.'

Marilyn,

Welcome back from your vacation--sorry your Mom is not well--hopefully by now she is recovering at home. So difficult to come home from vacation and deal with a stressful situation that involves loved ones. I know that you worry for your Mom even more because of your grandmother, but the good news is is that medical management of diverticulitis is getting better all the time--I have had 2 family members ( my MOM and bil) that we have also had to deal with it so I sympathize with you. Best wishes and warm thoughts your way.

Terry

[Guest guest]

Thanks Terry!

You're right- I guess I am blaming myself a lot. I think it stems from feeling

bad that I ate the wrong diet for so many years. I am thankful I finally found

it I just wish it would of come sooner.

I had no idea that pancreatitis could be viral. I have a " cold " and fever since

returning home and that whole area feels bruised. My husband was complaining

about " inner LUQ " pain yesterday which is odd.

I have had RUQ issues now for a while but never something like this.

I am seeing my GI on Monday and my other doc the following week to see what they

say.

Can they test for a virus that is bothering the Pancreas?

I just had a whole crop of blood tests including checking parathyroid function-

as my Vitamin D level are chronically low.

Anyway- wanted to thank you for such a compassionate reply to me.

It is amazing how uplifted I can feel reading the posts.

Jodi

---

[Guest guest]

Hi Jodi,

I don't know a lot about pancreatitis--your doctor will know better, but I found this link to an article from Medline that might answer some questions for you.

http://www.nlm.nih.gov/medlineplus/ency/article/000287.htm

You can google other sources to read about it, but among other things ( like gallstones, meds, alcohol abuse, etc) I know that sackie virus can cause pancreatitis. I don't know if there is a test. I myself suffered with sackie virus for many months with horrible joint and neurological symptoms that we thought were Lyme Disease. In fact I can blame sackie virus for causing my UC, either directly as the antigen that motivated my immune system to attack my gut, or indirectly, as we thought it was Lyme and I took massive doses of antibiotics for what we thought was recalcitrant Lyme, which probably damaged my gut ecology. Six months later, I started having UC symptoms.

I didn't mean to digress, but my point is that viruses can cause a lot of damage to a lot of organ systems and it can be very insidious. Again, I am not saying that a virus is a cause of your pancreatitis--it's just a possibility. The article sites medicines, metabolic disorders, gallstones as also possible causes.

I know you'll probably get some more answers from your docs.

Keep us posted.

Regards,

Terry

Re: Hi Marilyn

Thanks Terry!You're right- I guess I am blaming myself a lot. I think it stems from feeling bad that I ate the wrong diet for so many years. I am thankful I finally found it I just wish it would of come sooner.I had no idea that pancreatitis could be viral. I have a "cold" and fever since returning home and that whole area feels bruised. My husband was complaining about "inner LUQ" pain yesterday which is odd.I have had RUQ issues now for a while but never something like this.I am seeing my GI on Monday and my other doc the following week to see what they say.Can they test for a virus that is bothering the Pancreas?I just had a whole crop of blood tests including checking parathyroid function- as my Vitamin D level are chronically low.Anyway- wanted to thank you for such a compassionate reply to me.It is amazing how uplifted I can feel reading the posts.Jodi---

[Guest guest]

Jodi,

Although pancreatitis was probably the cause of your elevated white blood cells,

I thought I'd share a possibly lesser known cause...vomiting. When I was in the

ER last summer, my WBCs were high. The ER doc said that vomiting in and of

itself can cause your WBCs to spike.

Holly

Crohn's

SCD 12/01/08

> In the ER in Israel they gave me antibiotics " just in case " since my WBC was

through the roof (all other hema blood values were great and Anemia was not

present at all) not sure if pancreatitis can cause an elevated WBC- makes sense

that it would.

[Guest guest]

Holly,

Very interesting!!

I am going to talk about this with my GI tomorrow!

They just knee jerked in the ER and pumped me with Antibiotics.

Jodi

> Although pancreatitis was probably the cause of your elevated white blood

cells, I thought I'd share a possibly lesser known cause...vomiting. When I was

in the ER last summer, my WBCs were high. The ER doc said that vomiting in and

of itself can cause your WBCs to spike.

[Guest guest]

Hi Terry,

> You poor thing--it sounds like you had herpangina ( sackie A) or hand, foot

and mouth disease. My son had it last year and he was in so much throat pain

like you and could not swallow. It's very scary, to say the least.

Ohh, it was terrible one of the worst things I have ever experienced. I was on

liquid lidocaine that whole time (who knows what it did to my belly) and eating

pound cake to " line " my belly. I cringe thinking about it.

Which sackie did you have and how did it affect you? How long did you have

it? Do you know how you got it?

> Thanks for sharing your story. Antibiotics are necessary, but they have the

down side as well. Clindamycin is infamous for causing C. diff colitis. Having

experienced the Lyme scare and getting tested for all the co-infections as well,

I can relate. I read about all the people who had been mis-diagnosed or under

treated and it made me continue to up my antibiotic dose, stupidly. You are

smart to avoid them if not necessary. They are life-savers, but should be used

judiciously.

You know.. I asked my GI at the time if Clinda would be ok for me and he said

" ohh it's fine " My new GI says that there are certain antibiotics he WILL NOT

prescribe for people with IBD. He actually grabbed his head and looked down (he

did this a couple of times hearing my history) and he apologized on behalf of

all of his GI colleagues for how I have been " mismanaged " . I don't have a lot

of faith in GI's. They are necessary but I avoid them like the plague.

Just like antibiotics I guess LOL..

> You are right to just focus on making your food and recuperating. You don't

have to do any research--you just have to pamper yourself and get well

emotionally and physically. The most important thing right now is to take care

of yourself. I'm sure you'll get all the info you need from your docs--it sounds

like you have some good ones.

Thanks for writing this Terry as I feel I need to be super educated and

micromanage my docs so it is hard for me not too look into everything. But I

just don't have the mental or intestinal fortitude right now! My docs are used

to it and this new batch of docs (all since the SCD- this diet has given me so

many new tools) welcome me behaving this way- they all say I should and have a

right too.

I appreciate all of your kind words and support. It sure means a lot to me.

Jodi

[Guest guest]

I hate the way they just give antibiotics for no reason. One time my parents

took me to the ER for dehydration (thinking they would give me fluids and send

me home). They thought I might have an infection, so started antibiotics. I felt

worse, and they admitted me. Tests later came back saying I had no infections,

but they kept up with the antibiotics. Four days later, a nurse noticed that

every time she hung a back of antibiotics, I felt worse shortly later. They

stopped the antibiotics, I felt good, and they sent me home. Four wasted days in

the hospital just because they were pumping me with antibiotics I didn't need.

*steps off the rant soapbox*

Holly

>

> Holly,

>

> Very interesting!!

> I am going to talk about this with my GI tomorrow!

> They just knee jerked in the ER and pumped me with Antibiotics.

>

> Jodi

>

>

> > Although pancreatitis was probably the cause of your elevated white blood

cells, I thought I'd share a possibly lesser known cause...vomiting. When I was

in the ER last summer, my WBCs were high. The ER doc said that vomiting in and

of itself can cause your WBCs to spike.

>

[Guest guest]

Hi Jodi,

'Which sackie did you have and how did it affect you? How long did you have it? Do you know how you got it?'

I don't know which I had or how I got it ( I think there are 24 different serotypes) and it was kind of diagnosed after the fact--I was also 'mismanaged'. I started with some annoying joint pain in my right index finger and I thought I had strained it at work. Each day the pain spread to another finger in my right hand then into my wrist. Then the pain started in my left hand. With each day I had new pain traveling into new joints and it started to worry me as my Mom had rheumatoid arthritis (RA) and I know there's a genetic component. Finally when my knees and hips got involved ( approx 2 weeks into this), I called my PCP. He was on vacation and I saw his nurse practitioner. The only thing I could think of was Lyme--I live on 10 acres of woods and we have all been bitten by ticks at one time or another, even though we are careful. So she did a whole blood work up and put me on antibiotics in case it was Lyme. Oddly enough, I seemed to improve and attributed it to the antibiotics. But then I would relapse, I started having neurological symptoms; the soles of my feet hurt to walk on in the morning when I got out of bed, I had cold sensations running up and down my arms in the heat of the summer. All the blood work came back negative, even the RA. My sed rate was nothing. She basically implied it was all in my head.

I had no fever, nothing. Just felt lousy. It was a struggle to go to work and use my hands and then come home and take care of the kids. The symptoms stayed with me for 2 to 3 months I would say, and still were residual for a long time after. The symptoms varied and came and went. I can't even remember all the weird symptoms I had. I saw an Infectious Disease specialist who tested me for all the co-infections, even a rare co- only carried by a tick on rabbits down Cape Cod ( I live in RI only an hour away from the Cape). After increasing my tetracycline dose so high that I was burning in the sun just walking down the street, I stopped taking it when he told me that he didn't think I had any infectious disease. I finally got to see my PCP who told me that it was probably a sackie virus and that they can last for many months. As I said before, approx 6 months later I started having bleeding with bowel movements that was actually UC, but I thought it was just hemorrhoids and so did the PCP and the GI he sent me to until the colonoscopy said otherwise.

I know my immune system was down due to extreme life altering stress I was experiencing before this and I think this opened the door for the sackie virus.........

'....I feel I need to be super educated and micromanage my docs so it is hard for me not too look into everything....'

It sounds like you got some good info from your Doc today--I was reading on another of your posts. You are doing just right. You can’t be Superwoman all the time. Thanks for asking about my virus-- I appreciate your support, too!

Terry

Re: Hi Marilyn

Hi Terry,> You poor thing--it sounds like you had herpangina ( sackie A) or hand, foot and mouth disease. My son had it last year and he was in so much throat pain like you and could not swallow. It's very scary, to say the least.Ohh, it was terrible one of the worst things I have ever experienced. I was on liquid lidocaine that whole time (who knows what it did to my belly) and eating pound cake to "line" my belly. I cringe thinking about it. Which sackie did you have and how did it affect you? How long did you have it? Do you know how you got it?> Thanks for sharing your story. Antibiotics are necessary, but they have the down side as well. Clindamycin is infamous for causing C. diff colitis. Having experienced the Lyme scare and getting tested for all the co-infections as well, I can relate. I read about all the people who had been mis-diagnosed or under treated and it made me continue to up my antibiotic dose, stupidly. You are smart to avoid them if not necessary. They are life-savers, but should be used judiciously.You know.. I asked my GI at the time if Clinda would be ok for me and he said "ohh it's fine" My new GI says that there are certain antibiotics he WILL NOT prescribe for people with IBD. He actually grabbed his head and looked down (he did this a couple of times hearing my history) and he apologized on behalf of all of his GI colleagues for how I have been "mismanaged". I don't have a lot of faith in GI's. They are necessary but I avoid them like the plague.Just like antibiotics I guess LOL..> You are right to just focus on making your food and recuperating. You don't have to do any research--you just have to pamper yourself and get well emotionally and physically. The most important thing right now is to take care of yourself. I'm sure you'll get all the info you need from your docs--it sounds like you have some good ones.Thanks for writing this Terry as I feel I need to be super educated and micromanage my docs so it is hard for me not too look into everything. But I just don't have the mental or intestinal fortitude right now! My docs are used to it and this new batch of docs (all since the SCD- this diet has given me so many new tools) welcome me behaving this way- they all say I should and have a right too.I appreciate all of your kind words and support. It sure means a lot to me.Jodi