Re: edema, enzymes, constipation (to DEB)

[Guest guest]

Hi Deb,

I am sorry you have the problems you have. I have to first say though,

my doctor was very good in his work. But the hospital where I was, was not

attentive in the care. Please if you decide to go for any kind of surgery,

minor or major, you know you will be cared for once you are out of surgery and

you are watched. And make sure someone is there with you, waiting for you to

come out and that the OR staff and and the doctor know you have relatives or

friends waiting. and make sure they go with you to the room and or wait and

watch all that is going on with you the patient. I didn't get the care I

needed or I would have been in emergency surgery sooner, instead of a week

later, when all that leakage was in my system and I was very, very sick and

almost died. I was not watched nor did I have anyone there from friends or

family to watch them or me as I left the OR. Please do this, Health care does

not have enough help and not enough pay, and will leave patients alone and

to die. I know, I been there. I don't mean to scare you, but I worked in a

health care system for over 18yrs. and I only know of some cases like my own,

but rare. However, in the hospital I was in as an IN-PT, the care was horrible

and they didn't want me there and treated me poorly,and was mean to me and my

roommate. This was not a good experience and one I never thought in my life I

would be in. Hospitals have thier pros and cons, and I have never spoke poorly

of one I have been in, until this last surgery. My life almost ended due to

poor care and not being attentive enough. I had let the nurses know I was sick

and no one listened to me, and a week later, I was rushed to the OR after

throwing up the poison and the nurses couldn't understand why I was doing this,

EVEn Then!!! yeah, makes you wonder what they are hiring for healtcare, and I

am in my area with the hospital I was in. I had to state this, because its why

I am in the conditon I am in. It wouldn't of happened

had I better care. Just very hard to prove with very little wittness that will

not say anything.

NOw as if this surgery for me has helped me..., right now, I

cannot answer this, because the bag was not part of the deal, and the experience

I went thru, is not something I wish anyone to go thru. Most folks do not live

thru a bowel perferation and then not have any other problems later. Its what

is happening to me. So for now, until I actually go thru the reversal and get

thru that, and be almost normal again, then I can tell you the surgery worked

for me. I symthpatize the feelings you have. When you are using laxatives and

enemas, you are slowly killing youself and working your heart to a slow death.

The stress and pressure put on your heart alone when you do these things to your

body, is awesome and can cause many other medical problems. So I had to do

surgery to alieve me of pain and possible normalacy.

at this point the bag is there, and that is all I can say. It

was enough to do the latex free bags all on my own, knowing the hospital knew I

was allergic to latex!!!! I am so active and wanting to get back to my healthy

self, but tough to do so. The bag keeps me limited, I just keep thinking its

only temporary, and that is what gets me thru my days. For those who have a

permenant bag, I give them loads of lifetime credit..... I don't know how they

do it. But for me, I have had leakage and bag fall off from walking my normal

gait to exercise, and hiking is out of the question, since walking like I like

to is a nightmare. So I just keep minimal walking and its not fun for me. I am

an athlete, kind of tough keeping me down. and when you streatch your legs, you

stretch your skin, and well with being hot and sweaty, it all just has a

wonderful outcome of suddenly holding your side while trying to use a shirt and

shorts to keep the leakage down. The other thing is,

I am a high output, I am almost going in my pouch 24/7, the early mornings when

its time, I can change the bag, and then I can really get a good bath, instead

of being so careful with the bag, and most times, I sponge bath. I hate that.

I really like dipping in the water. I know those who wear a permenat bag, do

these things, but don't know how htey keep a bag on, unless the latex free bags

are not that strong and good for very, very active folks. I guess I am just

glad when the day will come, and I can in time after the surgery wear my jeans

again. I mean wear form fitting clothes that actually fit me, and not so baggy

and well, look good again!!! I guess you are hearing what I am feeling. Its

not that I am regrettful for the sugery, I just wish I was not with a bag.

However, I know the surgery has been very successful for many. It all depends

on the person and also make sure you get into shape as much as you can, not over

do it, but be in good shape to pull you thru

surgery. Because I was told of a bowel perferation could happen, as with most

surgeries you are told of the pros and cons, well my con surgery was the 2%

chance of it happening. It does, but many do not make it, and when they do,

expect other problems possibly later. A doctor is not going to really admit

they hurt you while saving your life, but it does happen. In my case they do,

as well as the poison inflamed my body. I can only say, that the surgery is a

choice made by you and your doctor. and I hope your doctor will know if its

right and that you are ready, and have gone thru the other electives of

treatment before going to being cut. I am alive and glad I am. I have made

changes in my life and as to how my next surgery will be and that someone is

going to be there for me. I made a living will, working on my will. Getting my

personal and medical information and account numbers, bills, banks, all of this

ready for a possible take over by a friend and family if I can

not do so or I die. I also have to make arrangements for my cat. Its alot to

go thru, but well worth the time. IF you do go thru any kind of surgery, and I

don't care how simple or difficult it may be, please do a living will, and make

arrangements for your care for if and when you cannot. I was suppose to gone

only 7 days and I spent a total of almost 6 wks, between two hospitals. Advice

I am giving is important, take it to heart. My doctor is too blase about

everything and takes alot for granted. I do not, and this time, I am not

taking any chances. He will be in a Hospital of my choice and one that I like

and know. I have folks set up to take care of my apt. and cat for longer period

of time then just the normal hosptial stay that I am told. Contacts are made

and set for all emergency purposes, including contacting my apt. leasing office

ahead of time, giving them a paper explaining my absence and why and who will be

there to watch my apt. and give them my next rental

payment etc...

I am saying this, because I went thru alot in the last few months. I

almost didn't make it, and well, I thought this surgery was going to be simple

in the recovery and yes with sorness and pain, but once never thought of that 2%

stuff the doc. tolf me of, and well, I wouldn't be here today. Just be

cautious. Nothing wrong in doing this, and be upfront with your doctor and

nurses, don't let them bully you, and or get your family to be attentive and be

your mouthpice for you. Its important. Also get second opinion if you need

surgery, as well as get information on your doctor if he has done many of these

surgeries, and how often, and how many go wrong and what are the cons, ask these

questions. Don't let it scare you not getting surgery if you need it. IT just

pays to do homework, and get the knowelege you need, so that if some thing

should go wrong, you are somewhat perpared. You are never prepared to really

die, and or go thru the almost dying thing, and waking up

with an appliance you know you shouldn't have and a hole in your stomach....

but at least you can come to know it, and learn to live with it, and hope that

its just temporary. Sorry, I went on here way too long....... just my feelings

and some good advice. I do hope you make out ok, and let us know. The Cp and

other problems you have adds to your health. Having these will make the decsion

for your doc. to manage how well you will do in surgery should you decide and if

your doc. sends you to a surgeon, ask many,many questions about the surgeron.

talk to ya later........ AMber

Debbie wrote:

Amber, you are the first person I have spoken with that has the same

problems as me. I am waiting for them to put an ileostomy in me. My

colon is a megacolon now and does not have any activity. Very painful,

bloating and difficult to eat. I can't even go out to dinner any more

because the bloating and pain is so bad after dinner. A real bummer. I

have been afraid and put off the surgery, do you think that it helped

you. Sometimes I think suffering like this is better. My nutrition is

getting better but is still poor. Please tell me more about your

experience. I have cystic fibrosis and that is where my pancreatitis

came from. Take care and talk to you soon. Deb