So I’ve been having little flare ups all week… and my bodies just been extremely tired… I’ve never been this tired… but my main concern is that when i do have a flare up my incision site from my surgery starts hurting…
I had the surgery like 6 months ago and its healed… my doctors don’t know what to make of it… anyone have any advice?
thanks
I don’t have any good advice, but wanted you to know that I will be praying for you and hoping that you start feeling better soon.
hugs,
dream
Where is the incision? Is it possible that you have developed scar tissue? Has the doctor addressed that possibility?
Vonnie
What type of surgery did you have? Was it pancreas related?
I have not had pancreatic surgery. I have been lucky so far, on that
front. I was hospitalized for 2 weeks, developed 3 potential pseudocysts.
However my body did not form the protective shell around the pseudocysts,
instead it just reabsorbed the pancreatic fluid. So technically they were
not true pseudocysts. The pancreatic surgeon (not other pancreatic
specialists were nearby) said it was one of the worst cases of pancreatitis
he’d seen.
I was told my my GP/Internist that I would be able to go to work immediately
upon release. I did try on 2 separate occasions to work but became
exhausted after a couple of hours. Being told I was “fine on paper” didn’t
agree with how I felt. So the pancreatic surgeon referred me to Dr. Emad
Abu-Hamda with Indiana University Medical Center.
Abu-Hamda thought I had a fairly serious episode of acute pancreatitis and
said it could take months to resolve itself. That was disheartening but
also encouraging since it meant the prognosis fit with how I was feeling.
However, since I am still having some problems he did another CAT Scan and
an Endoscopic Ultrasound (last week). He said there was significant
scarring of the pancreas meaning I had chronic pancreatitis. I was just
recovering from the antestetic so I was not up to my usual mode of
questioning. He is setting up a meeting with me next week or the following
one to discuss what this means.
But it means that the Biaxin (antibiotic) I was taking for a salivary gland
infection was not responsible for the pancreatitis. I had that infection
for 5-6 mo prior to the acute episode. It went away with the 2 days of
Biaxin I did take and with the IV Levequin (another antibiotic).
I have been on an extremely low fat diet (under 10 g/day) and been watching
my blood sugar. It sounds like that is what I must continue to do. Also no
alcohol which isn’t that big of a deal but I will miss having a glass of
wine now & then. I’ve been cruising the web and putting together a “fact
sheet” for me and a list of questions for Abu-Hamda. I came across Care
Place via The Pancreas Foundation.
So that’s me in a nutshell. How about you?
I was looking for a group FAQ but haven’t been able to find it. I always
hate stepping into a group and posting something wrong or taboo. Then 50
people will say, mostly nicely, something to the effect of “you dumb bunny,
read the FAQ” Could you point me to the location?
Thanks --Laura
On Sat, Nov 8, 2008 at 11:28 AM, Terri M <
pancreatitis-cpt10930@lists.careplace.com> wrote:
Well, I guess I have introduced myself as the dumb bunny that I usually am. I thought I was replying to Terri directly, but I see that I posted to the whole group. Sorry about that.
So feel free to point me to the FAQ.
–Laura
Hi Laura,
This is Terri and you are not a dumb bunny!!! This is a wonderful site and no questions are ever too strange or bizarre. Unfortunately the disease itself is though.
Wish we could find the magic elixir to make the pain go away.
I don’t have the disease, but my 20 yr old daughter does. She has the hereditary CP—went through many ERCPs and had the Puestow in 06. It worked really well been able to stay out of the hospital and go to college-but the pain has never completely gone away. She is on much lower dosages of meds, but hates the daily regiment of pain meds. She corresponded with Dr. Sutherland about the TP/ICT surgery, but not too sure about that right now. Hearing too many negative things, but I know it has worked for many. I’m just concerned about the long term effect-that’s what her dr. is too-he doesn’t feel she is in need of this yet.
Your case sounds interesting-one bout and they have listed you as chronic-that attack must have been very severe.
Feel free to contact me privately if you want-runner21@comcast.net- and I hope you are doing well.
Terri
Hey Laura,
To be completely honest i just found careplace myself not to long ago and i havent found any FAQ type thing either…
Everyone here is really nice and im sure if you post your questions in the forum someone with that experience will help you out…we’er all in the same boat here… pancreaititis is pretty rare i found in the forum that its about 2% of the world population has it… and most of that 2% is here in America… sooo im pretty sure most of that 2% is in this forum…lol…
Im one of those more rare cases because i had my first attack when i was 15… i was fine for 5 years till i turned 20 and they have no clue howI have it…
But anyways feel free to ask me questions…i might not have the answers… and feel free to post one of us has probably gone through it…
Hope you have a pain free day hun,
<3 Kelly
HI Kelly,
What type of surgery did you have? Did you ever get tested for hereditary panc.?
Terri
Hi Laura-
I hope a new referral will offer you better care. I know that my GI doc has
mentioned that Indiana has a very good pancreas center/department and he
seems to know where those places are found! I can’t believe your GP said you
could go right back to work!! Of course you have no energy! Your body is in
pain and that makes it work harder. In addition, when us pancreas people are
sick we can’t eat, what is our body supposed to use for energy?
My situation finally improved when the doctors figured out the cause. It
took quite a while to find out, but they did it in a way that caused the
least amount of stress on my body. Your situation is much worse than mine
because I have no permanent damage to my pancreas.
A website that I send to people to check is minnesotaplc.com - it is for the
Minnesota Pancreas & Liver Center and has some information that is useful.
It was on that site that I found a link for this
http://www.top5plus5.com/Index.html & it is a great resource of FAQs.
With FMLA, the most important thing to know is that you are only eligible if
you have been with your employer for a minimum of 12 months. And, while your
employer must grant you the leave they do not have to give you paid leave.
But, here is a link to the Federal Dept of Labor’s website about FAQ’s
regarding FMLA. I have had troubles in the last year because my employer
chose to use my absences due to FMLA on my performance review as a negative
which is in direct violation of the law. However, what can I do - I don’t
want to be a pain and then get retaliated against. I don’t want to change
jobs and start the 12 month time period over again…But, Chronic
Pancreatitis falls into the illnesses covered by FMLA and your employer
should have the information to give to you. (I have Acute Recurrent
Pancreatitis and qualify). And, it is the responsibility of your employer
and supervisor to provide you with information about FMLA.
Also, my personal advice is to drink lots of water. I find it almost
therapeutic to drink cold water when I am really sick but my doc says there
is no medical reason for that. I also highly recommend taking a roll of
toilet paper with you anytime you have to stay in the hospital. It sucks
having diarrhea in while in the hospital and have to try and use that crap
they give you there! While juice is a great source of vitamins and calories
when you are sick - remember to stick to clear ones!
You’re the best!
Love to you!
Jackie
Scar tissue? If it is scar tissue, there are Physical Therapists that
special in the break up of scar tissue. Sounds bizarre I know but I have
bouts with scar tissue and my doctor connected me with a PT that specializes
in this very thing. It is not a comfortable therapy but it helped me
tremendously.
Sending a hug,
Jackie