Whipple procedure, 19 years old.

WGT · Posted: Sat Jun 20, 2009 5:46 am Post subject: Whipple procedure, 19 years old.

Hello everyone, first ever post on here.

Im a 19 year old, who if you had gone back a year to when i was 18, was fit and healthy. I played a lot of sport, went out with my friends went to college and had a part time job.

However in Oct 08 i started getting chronic pancreatitus which would clear up after 3 weeks, then id continue to live my life. Then it would come back again after a month or 2 so i was literally living 50% of my life. After 4 episodes of this chronic pancreatitus and 3 hospital admissions the docotrs started to look more into my case.

This is when my central bile duct became blocked and i started to turn jaunticed with my bilirubin count going through the roof. So again i was brought back into hospital. I should say up to this point i have had an endoscopy, various blood tests and a CT scan. Now when i came back in jaunticed they suggested an ERCP which is simular to an endoscopy however it goes further down the tract so they can see the blockage in the bile duct.

Whilst they performed the ERCP they placed a stent in the CBD (central bile duct) to open it up and let the bile drain out of me. Immendiatly after the ERCP i passed out and nearly went into Cardiac arrest due to sepsis as the blockage had held back alot of bile which is a toxin so when they unblocked it, the bile flooded throught.

However i was in good hands and came though this. They then wanted me to have an MRI scan and identified a large mass on the head of my pancreas which needed to investigted as it was this that was previously blocking the duct. So they suggested and EUS - endoscopic ultrasound which is basically an ultrasound from the inside out. At this point i guess being only 19 i had drummed up some conversation within the docotrs and surgeons circles and i was being referred to a specialist in the UK who was going to do the EUS.

I had the EUS which identified the mass and a sample was taken to see if it was cancerous or not. The results came back negative which i was greatly relieved about however, the expert i was now with said in his opinion he was not sure of that result because of what the mass or the 'tumour' as it had now started to be called looked like. It was at this point the whipple procedure was briefed to me.

I thought it seemed very radical but in all honesty i did need it as this mass was obstucting my body and causing me trouble. The last thing i wanted was to leave it too late as the tumour was getting near a blood vessel which would of meant the whipple could not of been performed. So we agreed on the whipple proceedure. That whipple proceudre took place 11 days ago.

I am still awaiting the results of the histology of the tumour so at the moment i do not know what the tumour is. I have to admite the surgery is tough, i was in the operating theatre for 7 hours in total and when i came round i had countless amount of tubes coming in and out of me. However the reason of me writing all of this, is to invite anybody reading this to reply if you have questions because we could share advice and experiences, just to repeat i have had;

ultrasounds
CT scan
MRI scan
ERCP procedure
EUS procedure
Whipple procedure

Obviously to be typing on here 11 days after a whipple procudre is very good progress but the doctors say that is because i have age on my side. It is very rare for somebody my age to have this procedure. So i guess i am unlucky but at the same time lucky im here typing at the moment. I guess there is a second reason for me writing all of this, and that is to try and recieve help aswell as give it. As i am struggling to see the lightat the end of the tunnle at the moment as i see my friends going out and having fun whilst i have been plagued with all these problems over the last year.

Anyways any comments on my story or any questions please feel free to reply and il get back to you asap.

My hardest thing at the moment is eating. Anybody who had a whipple how long did it take you to eat normally again?

thanks

bubeno · New User Joined: 25 Jul 2009 Posts: 1

Hi, Bless you poor thing for having to go through this so young!!
My aunt just had this and when I saw the cut and staples I almost past out. What a vigorous looking procedure! My aunt has been home for 2 weeks now after having the whipple and she has had her appetite since last Saturday. Her mom brought her over home made ziti & meatballs which I think helped to kick in the appetite. Have someone make you a nice yummy favorite meal and see if it helps. I think your appetite should be returning soon anyway. She says she doesn't like certain foods anymore that she used to. She starts her chemo(oral & Iv) tomorrow for 2 weeks then radiation for 6 months. Hopefully that treatment will rid her of this for good!
Good luck to you. Just the fact that your out here typing like you said is a very good sign that you will recover quickly!
Best Regards!

georgie430 · Regular Joined: 02 Jul 2009 Posts: 44

Unbelievable, wow WGT, I really hope your journey is over, meaning your biopsey is benign.

Yes from all the research I have done I believe they remove ALL tumors
of the pancreas, because of blockage and the potential for malignancy
down the road. So your dr's guided you correctly!

How long must you wait for the results? And do the Drs give you any
percentage of the chances of malignancy, like 50- 50 chance??

You are too too young, Is there any pancreatic or bile duct problems
in your family history?? Any digestive cancers at all??

Hope all turns out well, I feel it will and you'll be an actve young adult,
with years of emotional maturity.

Keep posting, I ironically read something on cancer compass, by a young
woman of 22, who had the whipple I believe when she was 12, ou may want to chack out that website.

With the best of intentions,
georgie439
_________________
"going thru these very rough times have made
me WAKE UP, I know this sounds cliche, but
don't want to go back to sleep" !!!

kezza1 · Regular Joined: 12 Jan 2009 Posts: 10

Had whipple 17/01/09 was out of hospital after 11 days but was back in the same night with an embolism home again after another 14 days.Started eating normallly in hospital, if you can call hopital food normal,since being home tho some foods just do not agree with me fatty foods,chinese and pastas just do not go down well and have started enzimes so that my tummy digests most foods without causing to many embarressing moments but if i forget to take them with my meals it can be a problem, cramping, wind,and very fatty motions, sorry about perhaps a little to much information. Fruits and rice dishes go down without to much drama and icecream I love icecream trimmed meat and veges are great to but from what I have read it changes from person to person so you may need to experiment. Hope this helps and of you have any question please ask and I will try to answer them from my experience, which to be honest is still on going.

scodaman · New User Joined: 23 Apr 2006 Posts: 6

Hi,19 is really young to have a whipple-hopefully it will have been done for a benign obstruction which means you will have many good years ahead.I had mine 11 years ago also in uk,aged 47.I too made a good recovery apart from digestive problems which I still have but vastly improved.It will take some time for you to find what foods you can eat.little+often is best to start.When nerves have been cut it is not always easy to tell if you are hungry or full+you will make mistakes and suffer the consecquences but it does get better and I eat very well now with the help of medication.If you get reflux of acid Nexium is great help,also colystiramine for bile reflux.You may be lucky depending how much of your stomach the surgeon removed and you will be able to eat ok.
Best to be aware as nobody told me about dumping syndrome which can happen if you overeat,that also settles with time.Also as time goes by you may need extra iron+vitamins but I'm sure you will have regular follow up as I still do and these things get spotted.Best of luck.

postman1952 · New User Joined: 15 Sep 2009 Posts: 4

Hi.my situation is something close to yours other than my age.I am 56.I was having burning pain in my upper abdomen.I went to a walk in clinic.they said i had acid reflux,gave me a prescription for nexium,and blood tests.the next day they called me and said I had to go to the hospital to be admitted for panreatitus.my lypase and amylase were very high.I was in the hospital for 2 days.took upper and lower cat scans of the abdomen and ultra sound.nothing showed up according to the radiologist so I was released and told to go to my own doctor.he did blood tests again and the same results only my amylase had gone down some.he sent me to a gastroenterologist.he scheduled me for an mri and blood tests.two days after those tests which was about a week later he called me in and said I had a mass in the head of my pancreas.he noticed i also had jaundice which he hadnt noticed the week before.but i had noticed myself.this friday i am going for an endoscopybiopsy and endoscopy ultrasound.I was scheduled almost a month from now until my doctor called the hospital and said that wasnt going to work,i needed to get in asap.i wonder why the cat scans and ultra sound didnt show anything but the mri did.they said its rarely to have a mass at the head of the pancreas be benign.dennis

georgie430 · Regular Joined: 02 Jul 2009 Posts: 44

Hi Dennis:
When do you go for your endoscopic ultrasound, which is an ultrasound performed from the inside of the stomach looking at the pancreas. Also and probably more important, Where are you going??

Are you in the states, there is John hopkins message Board, wich has a lot of traffic for panc tumors.

I agree w/ your Dr. hope you are getting in this week so theycan hopefully perform whipple. There is someone who lives close to me whose tumor took the same course, he got pancreatitis and they found it early, so far five year survivor!!

You also may wnt to start this on a new topic, you will get more responses as people think this is about the 19 yr oldyoung man who had whipple and responses to that.

Dennis you will be in my heart.

Denise
_________________
"going thru these very rough times have made
me WAKE UP, I know this sounds cliche, but
don't want to go back to sleep" !!!

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