Re: To : Estrogen and Pancreatitis??

[Guest guest]

YEs, long time no talk!! Thanks SO MUCH for your kind words and

advice . Things have just gotten so much worse since the

sphinterotomies that I'm beginning to wonder if I should have had

them at all....but Dr. Lehman wouldn't have done them if he didn't

think I needed them and he's the best there is...but problem is

there is NO doctor (so far) in my area that understands the way he

does about his illness even the doc HE recommended!! I just feel so

helpless and I'm getting very down and depressed lately mainly

because of the effect it's having on my family. My poor little boy

couldn't even go trick or treating last weekend because I had to go

to ER!! Will talk more soon, hubby took son to see the Incredibles

at the theater and they should be home any minute now.

thanks again

love

>

> Hi ! Long time no talk! I haven't had the time to post to

the

> boards in a while, but have read them. When I first started

having

> symptoms of CP, my doc found I had an ovarian cyst. She thought

> that might be what was causing the rise in the amylase. I have

had

> cysts before and had surgeries to remove them. Not knowing

anything

> about CP and being extremely ill, I just went along with the docs

> suggestions to have the cyst removed. After the surgery they gave

> me 6 weeks to " heal " from it, to see if that had any influence in

my

> amylase. Through this time I was getting sicker and sicker, and

> lost about 20 pounds. Finally they decided to send me to a

> pancreatologist. I went through all the tests, surgeries, stints,

> ect. for CP. About a year later after I was diagnosed and treated

> with pain meds and enzymes, I got another cyst on my ovary. (I

had

> only one due to the other surgeries I had because one cyst had

burst

> on my other ovary.) They decided to due a hysterectomy. The doc

> thought he would give me a chance without HRT to see if it would

> affect my symptoms with CP. For a while there I thought that it

was

> helping (about a week), but now I wonder if it didn't have

something

> to do with the meds and anesthesia they gave me with the

surgery??

> Anyhow my CP remains as it was before the surgery. Things affect

> people differently, so I know my experience might not even help

you,

> but you seem pretty scared and determined to relieve your fears

and

> hopefully the pain. I know when you read other's stories it helps

> you to make decisions to have a better quality of life. I did

want

> to mention something my doctor said that might be very important.

I

> was a little afraid to take HRT because of the affect it would

have

> on my pancreas. You just never know what will come up in news

about

> medicines and how they influence a person's body, you know? He

told

> me that the HRT patches would be better for me because of

the " first

> pass " I think he called it. When you digest something it makes it

> run through the stomach, gets the juices flowing, hence the

pancreas

> starts working, and makes a pass through the liver. With the

> patches they absorb directly into the blood stream. (He also said

I

> should only use the natural hormone, not the one from horses.

Can't

> think of the name of that one.) I'm not sure if you are using the

> patches or not, but it may be worth a shot to try them. Another

> thing I wanted to mention to you, if you have the time or

interest,

> is to do research on what hormones do to influence your body. I

> spent a couple months researching, however, I can only remember

bits

> and pieces of the information. (My memory has been horrible since

I

> had all those surgeries and the meds I'm on now!) I do remember

> thinking that it would be better to try and mimic the hormones I

had

> lost because the role it plays in your body. There is something

to

> do with an organ? in your brain, the pituatary gland, and even the

> pancreas itself.

> Here is one link to get you started:

> http://micro.magnet.fsu.edu/micro/gallery/hormones/hormone.html

> (I just did a search and glanced at it a little.)

> I had never realized the intracasies (sp?) of the body. We

studied

> cells and the like in school, but there is so much more! It maybe

> also that your body is telling you the estrogen you are in isn't

in

> balance with what your body needs, also. I really believe that

your

> body alarms you about things, too, so maybe it would be worth a

shot

> to try a different dosage or brand. Lastly, I wanted to encourage

> you because so far from what I have experienced with CP is I have

> had " spells " like you are mentioning where you are feeling worse

> than before and I was scared to death. What is going on with my

> body? Should I go back to the docs? It scared me to think of

> having more surgeries, more medicines, ect. Just not knowing what

> to expect is frightening. What I found out, and my doctor always

> tells me, is that I have " spells " of better days or worse ones.

> Seems like just when you think you can't take the worse ones any

> more, your body gives you relief. Or when you have so many good

> days, you wonder if you even have CP any more, and then it lets

you

> know you do! This might just be one of those bad spells and has

> nothing to do with your estrogen. Hang in there! We all know

what

> you are going through and are here for you. I am learning when

fear

> begins to creep in, I rent some comedies, or dramas where they

> struggle and win in the end. Sometimes my husband will read to

me,

> anything to get your mind off the fears. If you like to read, I

> have found a great author that writes to where I can't even put

the

> book down all day long, and the books are pretty thick. (What

else

> have we got to do, when all you can do is lay there because you

> don't feel good, right?!!) Her name is Francine Rivers. If you

can

> keep a stock of good books around, so when you are feeling down,

> they are readily available. When you don't feel well, it is hard

to

> go shopping for books. One time I sent my husband on a book

> mission....awful decision! Anyway before I write my own book

here,

> I hope you will be feeling well soon!

[Guest guest]

, I am sorry I guess I missed the digest about you getting

those sphinterotomies. Did they go into the pancreas or just the

biliary ducts? Each time I had that done I started to feel better,

but then about 1 week after my symptoms worsened by about 100x

seemed like. It was awful and I was scared for my life. They would

have to go back in and remove the stints that were suppose to be

there for 6 weeks. The first pancreas doc I saw only cut my

pancreas duct a little because my mametry? levels were just barely

over the line. When I was sent to a university hospital that doc

ended up cutting it the rest of the way because after he did that

SOD mametry test (I can't remember if that is exactly what it is

called! lol but it tests the pressures in your pancreas ducts.) he

thought it was too high, and he cut it the rest of the way. He put

a stint in that moved its way out of the duct on its own within a

couple of weeks, so they wouldn't have to go back in and mess with

my pancreas more than they already had. This last time I didn't

have much problems with the stint. I don't know if my body was

rejecting them or what but I was very ill from the ones I had in

before. Maybe the pressures were so high before, and after he cut

it the rest of the way the stint didn't bother me. You might want

to give Dr. Lehman a call and let him know. When our doc called to

see how I was doing after each one, it was a big deal to him that I

was doing worse because it was suppose to help. Now I have heard

that Dr. Lehman is one of the best, so if he is ok with you feeling

this way then maybe it is normal, but my doc had a big fit over it.

I even had to ride in the ambulance all the way there (this doc was

2 hours away). It may be worth a shot to call if you haven't

already.

I know how your feeling with your child. I have two daughters just

turned 8 & 10. Wish I had some words of encouragement, but I know

how you feel and I don't think anything said really changes the

guilt you feel. Life looks so much different for a family when they

have a major crisis like you and many of us our going through. I

think back and get so mad at myself for not appreciating just waking

up and feeling nothing. How I envy my husband who can just jump up

and go for the day, you know? , I can't remember how long you

have been dealing with this? Maybe almost a year now? One of the

things that happened with my girls, boys might be different I don't

know, but they never really had a chance to tell me how afraid they

were that I was going to die. I was in and out of the hospital for

about 6 months. They were never left with anyone for more than a

couple nights before all this, and then it was a week at a time

sometimes and when their mom was ill. At the time, yeah the events

were kind of a bummer to miss, but it wasn't what they dwelled on.

They were wondering if mom was gonna be alive for them. Someone

nicely mentioned to make sure I asked them direct questions about it

and then just listen. I would tell them how much I love them and

I'm going to be alright, but never really allowed them to say how

they felt, so I never realized they had fears because I was telling

them I was going to be ok. In the midst of things its hard to see

all the angles. Anyhow when I did this like I mentioned above, the

events didn't matter, it was if I was really going to be ok. People

also have been so generous to our family and offered to give rides

here and there for them. It was so hard to let go and let someone

else because I want to be a part of the things they do, but I know

it is important for my girls to experience life as a kid. They

still miss stuff, but we have more of a balance now. And I realized

that I sometimes didn't " listen " to what they were saying before

because I was there with them doing it, but now I listen it's

different. I know when I was a kid, if you could find anyone to

take the time to listen that person was awesome. You be the best

mom you can to the best of your ability, and he'll remember that.

Not that we should compare to anyone, but some kids don't have moms

like that. I also realized they understand when you don't feel

good. My girls haven't never grew bitter or resentful for it. My

husband may help alot in that area because he fills in the gaps, but

your husband sounds like that too.

I'm sorry I always find myself writing too much! Heidi always makes

me feel better about it because she mentions doing it! I better

get, but I'm wishing you the best !

>

> YEs, long time no talk!! Thanks SO MUCH for your kind words and

> advice . Things have just gotten so much worse since the

> sphinterotomies that I'm beginning to wonder if I should have had

> them at all....but Dr. Lehman wouldn't have done them if he didn't

> think I needed them and he's the best there is...but problem is

> there is NO doctor (so far) in my area that understands the way he

> does about his illness even the doc HE recommended!! I just feel

so

> helpless and I'm getting very down and depressed lately mainly

> because of the effect it's having on my family. My poor little

boy

> couldn't even go trick or treating last weekend because I had to

go

> to ER!! Will talk more soon, hubby took son to see the

Incredibles

> at the theater and they should be home any minute now.

> thanks again

> love

>

>