Had whipple surgery 2008. Have had these attacks for two years now. I have the best gastro doctor in the world. Prescribed Levsin .125 mg tablets that dissolve under your tongue at the onset of pain. Pain gone in a minute or two. Miracle drug!! Had to share this with everyone. Watch the STRESS and what you eat.
Please join our group: Whipple Surgery Survivor Group on Facebook. We are all either whipple patients or family of whipple patients. We are trying to get Post Whipple Attack patients together so we can find an answer. Please join us and tell us your story.
Sometimes the attacks are so strong that i go to hospital and stay there for 10 days to make a pain therapy with morphine intravenously. This happens averagely 1 till 2 times per year.
Thanks good i live in Germany where evryone has a help insurance. It is law here. So nobody has to be worried because of the cost of the medicine and the hospital staying.
And it´s no problem here to get a morphine prescription.
I had a Whipple operation in 2004. The head of the Pancreas and the gallbladder were removed.
2 Months later the pain attacks came back. The doctors said, it´s a high grade Chronic pancreatitis.
If i have a pain attack, i need up to 14 pills per 20 milligrams of morphine (SEVREDOL20) at one day. Normally this helps, so i have always a box of morphine pills at home. Of course, morphine has a lot of side effects but everything is better than this horror of pain.
I just started a Whipple Surgery Survivors Facebook page. Please go to it and click the like button at the top. This page is devoted to all who have had the whipple, pancreatic cancer or other tumors that led them to have the Whipple. We need to unite on this and then bring it to the attention of researchers to find an answer.
wow I have stage 3 pancreatic cancer and had a major whipple, I always wonderd if other people had what I call pain attacks. Just like the vid, the screaming in agony and pain. Not as often as they use to be, but man the pain is like hyper ventilating and crying out screaming and dizzy from like passing out. I take two pain meds, 30mg morphine and dilaudid.
I thought I was alone! Would not wish this on anyone! I had the Whipple in Nov. 2008 with complications, they accidently cut the portal vein, bled out, heart attack, internal bleeding, 32 transfusions, blood disorder, 70% of spleen removed & still have occlusion in portal vein, eating has gotten increasingly difficult and pain is daily, horrible after eating! God bless you for posting this! I didn't know there were others out there! Hopefully doctors will take notice. This is real!!
My husband John had the whipple, the pain is undescribable...your grownings probably don't do it justice. You can see our story at the link below. I have written a book about how this changes your whole life! "Why Us God" is in publication, once printed and sold, each book will donate funds to National Pancreas Foundation for research/cures...here is the link
My husband John had the whipple, the pain is undescribable...your grownings probably don't do it justice. You can see our story at the link below. I have written a book about how this changes your whole life! "Why Us God" is in publication, once printed and sold, each book will donate funds to National Pancreas Foundation for research/cures...here is the link
This is painful to even watch.... I have been there - pancreatitis for over 45 years Chronic for about 12 of them years. On February 22nd, 2008 I underwent the Total Pancreatectomy with Autolgous Islet Cell Transplant. I got a measure of my life back!! I stil have Sphincter of Oddi Dysfunction and the pain is just as bad as pancreatitis - but itis no longer 24/7 Two ERCPs so far since my surgery to clean out my bile duct. You are in my prayers and hope you find relief too.
I also had the Whipple in 2003. Pancreatic Divism is what they finally diagnosed. after 12 pancreatitis attacks and stents several times. The surgery was done at MUSC-Charleston,SC. It was horrific. I had abscess and they had to go back in 2 days after surgery. The puking, the pain, the drains, the TPN...and to put shit on a stick, I got meningitis 6 months after surgery. I know the pain you go through. I also have had 8 lithotripsy procedures and tubes in both kidneys for stones. I understand!
I have not had a Whipple but experience similar pain. Started out as pancreatitis 10 years ago but in the last 5 yrs, my liver enzymes go up in the 1000's and stays up 2-4 days. Pain episodes are 20 min to several days. Sometimes I am hospitalized on IV demerol. Also have oral demerol to take at home. I have had every med test my oncologist can devise and no answers. Seems like I'm the only 1 with this problem, but I can tell from your video the pain is the same. Anyone have similar prob?
my mom didnt have a whipple but she had her gullbladder taken out and after a month she gets the same pain kinda scary took her to the hospital and they didnt find anything also lasts about few minutes anyone know anything that can help
I have been having these attacks for 8 years (since my whipple in 02). I am only 26 and sick of these happening. I dont have the option of using that patch seeings how its a narcotic and my work would test me for that. Guess I will keep searching for something else to ease my pains. I thought I was the only one who was having this pain, I wish this on nobody and I do feel your pain.
I have a duodenal ulcer and chronic pancreatitis, since early this year and have had the Whipple procedure recommended as the answer. I am so frightened. I've had countless endoscopies, cat scans, etc, but they can't find anything. I really don't want to have this surgery.
After my whipple my Radiation Oncologist recommended Xanax .25mg once a day in the AM to combat intense intestinal pain spasms. That made all the difference to me. I might have slight issues once every couple of weeks now instead of daily.
I'm not sure what to do about pain meds. 'm very limited.I have just learned to roll with the pain, and if I die during it, then so be it. I've had 3 children, lumbar fusion,colon resection, cervical fusion, hysterectomy, and other surgeries, and all of these, together do not compare to this pain.I am rendered totally helpless. There is nothing that can do and I sometimes beg for death to come, as it is so bad. I don't feel I will ever be the same again. I try to keep a smile on my face though.
I'm almost speechless. I had the whipple, then complications, ruptured spleen and then a total of 6 surgeries, 8 pints of blood, etc. in the hospital mostly on the respirator. Then I come home on pain meds, then off after a month or so. THEN THE PAIN I JUST SEEN IN THE VIDEO. Tks. for taping it. That's what it is! I feel as though I will die. I can't even get up. All I can do is roll w/the pain, scream, moan, yell etc. I hate it. I have NO ANSWERS EITHER! This lasts up to 4-5 min. then gone.
That's what happened to me as soon as I started taking less pain meds the attacks started... now I'm on the fentanyl and they are a lot less frequent... At least you know your not the only one, maybe show the video to your Dr. and tell him about the fentanyl... it works.... better than dealing with those attacks...
If the pains continue and become more frequent, I will not be able to live this way. Something will have to be done. I am able to tolerate a LOT of pain, but this whips me bad. I am going to send my doc the video. I've viewed some of the posts. GAS? Excuse me, I can't buy that. Walk around? I cannot make a move to do anything, my whole body goes into contortions with and during the pain. Walk around? I cannot do anything but what harvetized is doing. You are trapped with the pain
"it has been compared to "wild dogs ripping your bowels apart while still arrive" my Whipple was in 2000...I only wish that the "dogs" return a lot less frequently...."
@harvetized My name is Warren. I have tried to contact you before. Please contact me. I have exactly the same pain attacks that I swear will kill me one day they are so intense but I have found an answer after 10 years. Med profs still don't know what it is but a very clever gastro surgeon in London has got me these magic pills that I keep on me at all times. They work in 20 -30 seconds of me taking them. I would love to speak with you. Please call me 004437432639 or wburmaz@hotmail.com
@harvetized My name is Warren. I have tried to contact you before. Please contact me. I have exactly the same pain attacks that I swear will kill me one day they are so intense but I have found an answer after 10 years. Med profs still don't know what it is but a very clever gastro surgeon in London has got me these magic pills that I keep on me at all times. They work in 20 -30 seconds of me taking them. I would love to speak with you. Please call me 004437432639 or wburmaz@hotmail.com
you should lay down flat after eating. Also, research an appropriate diet for your condition and stick to it. You may also want to ask your doctor about the antacid medication with regards to the dosage, when is the best time to take it (before, after, or with meals) And if you experience shoulder blade pain, that is gas pain that radiates. Treat that by walking around to break up the gas. I hope this helps you and good luck to you.
lay down flat? I cant lay down flat on either side, front or back. Eating is painful as well! Referred 'gas pain' in the shoulder is common immediately following surgery, not years later. I've been told that the pain in the shoulder following eating is referred pain from the diaphram or the Phrenic N., most likely damaged during surgery. My name is Steve, & I had the Whip cracked on me 19mo. ago and I still suffer. w/out the 60mg of morphine ER & oxycodone IR for accute attac
....attacks I am In such horrific pain that I cant even think. I had spent many days & nights w/out meds in a hot bath writhing in pain before I got some help w/pain management. I would drop weight, loosing 10/15lbs.@ a time not eating for weeks due to the pain it would cause. My life was reduced to trying to get sleep proped up on the couch and doing nothing all day but sitting around & watching TV. with meds things are better but still limiting and I am still seeking relief. My
....attacks I am In such horrific pain that I cant even think. I had spent many days & nights w/out meds in a hot bath writhing in pain before I got some help w/pain management. I would drop weight, loosing 10/15lbs.@ a time not eating for weeks due to the pain it would cause. My life was reduced to trying to get sleep proped up on the couch and doing nothing all day but sitting around & watching TV. with meds things are better but still limiting and I am still seeking relief. My
Dr. has mentioned a 'celiac block' wich kills the nerve center known as the celiac plexus. I am considering this w/hopes of reducing the use of meds to cope w/the pain but am apprehensive about doing anything else invasive that may leave me in worse shape than I already am. Has anyone heard of or perhaps tried this procedure? If so what was the outcome? I am anxious to know! I feel deeply and personally the pain that we all suffer with but in a way it was a comfort to me to know my
hell is at least not a loney hell:-( I hope and pray for all of us to find some relief from the pain we have had forced upon us and I'm happy that we have some place where we can feel we are understood at the very least. Take whatever you can get, I say.
Gas pain? You sound like a Dr. or an unempathetic nurse! Let me know which one.
Hey I am so sorry that you experience such chronic and harsh pain. I am a nursing student and from what I have learned about the Whipple procedure, what you are experiencing can be related to increased pressure within the abdomen caused by gas, overeating, certain foods. Also, Whipple patients experience dumping syndrome. Because your anatomy has changed, specifically the sphincter at the end of your stomach that controls emptying has been removed, this can cause many probs.
I am a going on 10 year survivor of Stage 3/Positive nodes, and I have a daily ritual of extreme bowel pain. Sometimes I lay on the bathroom floor, with a towel over by head so my wife and kids cannot hear me moan and cry. At times I pray to die. I take Methadone and Valium,but it ruins my quality of life. I feel so much for the guy in the video. They say I'm cancer free..I say cancer lite. I continue to lose weight. I started at 186lbs, am now 119lbs. Pain can break the strongest man.
I just came across your video..I too have spasms in my stomach not as bad as you have but it is there. I had the whipple surgery 3yrs ago and I still have a tough time eating sometimes I'm fine and the food doesn't bother me and sometimes when I eat I get a stomach ache and naseau and also I get burning from my rib gage right up my throat and my mouth & tongue will burn. I take 40mg of Omazerpole and tamazapam. I all so get pain coming up in between my shoulder blades. No cnacer just chronic Pan
@SuperSmuckers i am currently in nursing school and the pain you are experiencing that is in your shoulder blades is related to gas. the best way to get rid of it is to walk around to help pass the gas.
Hi there, My name is Naomi, I was 32 when I had my full whipples(13th July 2007 in Royal North Shore Hospital). My tumor was quite large 8 by 9 by 9cm and most of the head of my Pancreas was removed. I still have those attacks 3 years later. My attacks began when I started to eat again after my Op. I found that everytime I do not get my enzymes correct and or eat too much and not go to the toilet the day before is when my attacks happen. Usually in the morning on an empty stomach,
I had this whipple in Feb 2010. At the UofM Center in Ann Arbor. I have only had severe intestinal cramping and gas. I take 15mg of Reglan 4 times a day. That helped a lot. But if the cramps get to bad I add 20mg Donnatol. So far I have been very active with only fatigue if I push myself to hard. I also recommend a good Gastroenterologest in your area.
My God... That's absolutely horrible to watch! I hope you find a doctor WHO CARES! You need to be on at least 50mcg of Fentanyl! I have severe Panic Disorder, and that right there of you in agony, reminds me of my Panic Attacks! It makes my hernias in my lower spine multiply! That's terrible! (Not the Video). I'm prescribed Klonopin (Clonazepam) 2mg & Restoril (Temazepam) 30mg. I use 100mcg Fentanyl Patches (not prescribed), and it works Great! It RIDS my depression! I get "Calm Energy" too! GL!
it has been compared to "wild dogs ripping your bowels apart while still arrive" my Whipple was in 2000...I only wish that the "dogs" return a lot less frequently....
its a relief to hear that alone as I was afraid you would know too well or discount it entirely. While I watched your body response I was crying for you to get fetal or even on your knees, which you sorrta did towards the third half/ but I find my self in all sorts of positions when its over, perhaps what an epileptic feels after seizure...I donno....For folks around it must really be scary, perhaps just treat us as we were ..epilitics do nothing but remove objects that might be in our way!
my tumour was also "benign"...had no capacity to develop to Stage 2....pus filled with necrotic tissue ...pancreas enzymes are programmed to auto digest which they start to do with your own cells when they are blocked...In our case the PC has the sever pain of chronic pancreatitis..Most other "cancers" of the pancreas (carcinomas) announce themselves with jaundice...hepatic liver infection....for those unfortunates it's too late...in Canada last year 3600 of 3700 PC cases did not make it.
No cure, but constant food adjustment, adjust coffee intake until the body wakes up, some simple stretches or a short walk can adjust your new suspension of your gut, remember, your gut has lost its natural "Hanger" and after sleep your new hanger doesn't drop things(organs glands) as they should. Causes seem to be over-introroduction of gases in stomach which cause it to swell, touch the damaged gland making it inflamed "itis" ....the pancreas does not handle inflammation well....
Gas is caused by the flora and by your tone, you took offense to my statement. I was doubled over in pain, last night. I did not mean to suggest you were not in severe pain. According to my surgeon, this is now our new normal. There are things we love to eat, that we should never touch, like the steamed broccoli I had with my dinner last night. Not only did I suffer greatly last night from the pain, this morning brings the explosive diahrea! We, post whipple, will never be the same.
I'm not offended at all. Let me ask you a question, when you say you are doubled over in pain how long does it last? Can you breath? Does it fell like you are going to die? Do you feel like you are going to pass out? Is it the most pain you have ever felt in your life? Like I said I had my gas after I got home but when my doctors started to ween my off the pain meds I started having these spasms. I hope you never experience what I live with, you are right we are never the same....
I found this video just before or right after my whipple, and it scared the hell out of me. My whipple was Sept 08, I have to take the enzymes to help with digestion, but it does not help with the bloating and gas pains. Yes, I do believe this is severe gas being portrayed here. I sit in hot bath several times per day for relief.
it has nothing to do with gas, I only had gas right after I got home. It's a spasm of some kind that takes me to places I have never been and never want to go again.
My Dad just had a successful Whipple Done... He hasn't had these kind of spasm yet, but I very happy to hear you found something that helped and am glad you put this info out there. I hope you're doing well.
My father passed away on 11/16/09 due to a finding of pancreatic cancer, he had the whipple procedure done and after that he had some infection due to the pancreas juices leaking out.. I would have loved him not to have the whipple procedure and lived the way your brother Donnie did.. Surrounded by his loved ones.. !!!.. He never got the chance to meet his 2nd grandchild, but he met his first one
One thing is at least he didn't suffer the pain that you did... I guess he just knew.
My father passed away 2 days ago after having the whipple procedure, about 3 weeks ago. He collapsed severely haemorrhaging from the mouth and rectum. They gave him 13 bags of blood but could'nt stop it, put him on a life support machine never want anybody to see that it was horrific the poor poor man the amout of blood loss was terrible.
It kills and pains me that these doctors can't find another way in order to get to the pancreas and have them live for at least a longer peroid of time. I find out about two months later that there is a center somewhere in Iowa or Idaho something like treatments for specifically for pancreatic cancer patients and they live longer.
It pains me that no one could have suggested this and not have my father pass away so abruptly, so sudden. One thing is I hear through this web chat, that you suffer while you are post whipple and for one thing is I guess God didn't want him to suffer after the surgery.
My God, I am so glad found this video, Thank you for sharing, I feel for you , My fiance had the whipple in May 2006, He still suffers daily with the intense pain, The doctors say that's just what he is left with That his food goes down and has to take a left and don't know it so it sits there & rots. He takes pancrease and lives on yogurt, I wish I could help him. The doctors sure won't. He is 47. someone please give me some suggestions,
Not sure I buy that diagnoses it sounds like they don't know whats wrong (like my doctors) and through that at you. i would go to a pain management clinic and ask them for help. Maybe get on the patch.
I had the Whipple at Moffitt on 10/15/07 (Dr. Hodul) and I am doing great EXCEPT for sudden onset pain that stars in my abdominal area and works its way through my chest and back. I call it "my heart attack pain". Feels like a beachball trying to get out of my chest. My surgeon has no idea what it is and I have had several tests by my gastro doc and all is negative. The pain only lasts about 45 seconds but it totally takes my breath away and leaves me drained. I also get clammy when it comes on
Dad is really good! He went from a 2X to a MEdium! He finally is weighing 180 now after being 150 for several months. He still takes meds to make his poop consistant. How r u? Happy New Year! I know its been rough for us all--economy, health, etc...Thanks for your support. You pulled us through! God speed!
Damnnn your video brought tears to my eyes!!! I know exactly what your going through. Did you have a hot sweat right after that attack? I am in recovery of a Whipples procedure at the moment, had mine on May 1st 2009... How long does all the pain last for??? Does that tight feeling in your lower chest ever go away??
That was the longest attack I had but not the most painful. I've had some that were so bad I couldn't breath and I thought I was going to pass out. I could push air out but couldn't suck air in... Very scary!! for me and my wife. It starts with a burning sensation at the lower sternum then shoots across my left side into my back then all hell brakes lose. I hope for your sake you never have to deal with this, it is the most pain! I have ever felt and I wouldn't wish it on my worst enemy
Thanks for asking Harvey. dad goes BACK to Moffitt again tomorrow. He has changed digestion meds twice now, this last one made him naesuaed and vomitted. He has lost tons of weight and now coughs alot. Experiences fevers everyday 2-6pm up to 101-98. He goes back in again for CAT scans and they open up the incisions again to drain yet more bile from inside. STILL has bile bag out in stomach and stint to heart (had abnormal palpitations after surgery) in arm for IVS, etc.. Worried. how r u?
Harveysized! I feel your pain! My Dad goes to MOffit in Tampa for his procedure next Friday and we really didnt know what to expect. This is just excrusiating pain to even watch. He is 70 and they think he has tumors. I will keep you posted! Hope you are better now!
does ur dad have pancreatic cancer.. This is just my opinion .. please don't do the procedure.. check and see if he can go to a specialist for pancreatic cancer.. (now this is if he has pancreatic cancer) because you don't want what happened to me to happen to you...
I had the Whipple at Jackson Mem. in September of 2006. I had a neuroendocrine tumor. The "spasms" started a month or so after surgery and were very intense. Mine usually lasted for 30 seconds to a few minutes. I still get them from time to time, but the attacks are not as near as intense as when I first started getting them. There is a Yahoo group that deals with pancreatic cancer. This group is a great resource if you are looking for answers or comparisons to others with similar symptoms.
I had the whipple done 3 years ago, I am now a full blown diabetic, and suffer everyday with things that docs dont know what they are. I am glad to know that I am not alone in this. thanks for posting.
I had a whipple in 1999 and I STILL have these "muscle spasms". My surgeon said it is the nerves growing back. They hurt like heck and painful. I fell down the stairs on Sun. b/c one came on so fast and strong that my legs buckled. Afterwards, you feel like you've run a marathon ! You're drained of all energy ! I'm so sorry you experience this as I do, but when you feel them come on... lie down quickly and relax and the pain won't be as bad as if you tense up ! When was your whipple?
I was in the hosp. for 3 wks. and about 2 wks. after being home I had my first "spasm" which scared me b/c it really constricted my lungs. I don't have that answer as to repair. Every body is different. In Aug. it'll be 10 yrs. since my surgery. I have nausea almost daily and have IBS b/c of the surgery as well. You'll find out what you can and can't eat. Get your doc to prescribe Creon. Its a digestive enzyme which helps in digestion and nausea. Docusate sodium and fiber pills help too
I found out what the spasms are not so long ago, my doctor said it is a build up of flora in the bowel, since I changed my diet I hardley ever have them now, I had my Whipples on the 1st of May this year so im still in lost of pain, but least the spasms are stopped. Just reading over everyones comments... Im glad im not alone tbh, this is the hardest thing Ive ever had to deal with..
My dad had a whipple proceedure done. And I can't remember if he ever had attacks like thia or not. He was in pain. But I don't remember if it was to this degree or not.
Steve, my husband just had this surgery on the 14th. We are back home now with g-tube & the drain. My husb is only 42 & is devistated with all the is going on. I am scared now to get those attacks back. Why did you have this done? Did you have a cyst or cancer?
I work with a woman who had a whipple procedure done and suffers from very similar attacks. I called her at work when I found this video so she could view it too. It doesn't make her attacks any less unbearable, but I think that it is helpful to find out that there is at least one other person out there who knows what she's going through. Her doctors don't have a clue and I don't think they realize the severity of her attacks.
Oh my God this is horrible. How long ago did you have the surgery? My MOm is also scheduled for this procedure but not sure she'll procede. Wish I could email you.
my god, that must be hell to have to bare twice a day! I hope the underlying condition that was the indication for your procedure is better...you are spot on empowerqueen, That is typical of colicky abdominal pain which often suggests the peristaltic contractions of the vicera (gut, ureter, bile duct) against a blockage. From the distribution of the pain, it may be biliary colic or following the procedure there may be adhesions and or scarring that prevents bowel from working smoothly.
Hey Guys, thats alot of pain! It almost appears as if your having a contraction. I will keep you in prayer and send you healing thoughts,Grace be with you... Love Always Dan & Klaw
HAHAAAAHAHAH LMAO you got to take a shit
MrHollywoodCoe 2 weeks ago
I have take 2 diff. pills for my stomach called:
Omeprazole 40mg and Abdominal pain
4shanaharris 3 weeks ago
Had whipple surgery 2008. Have had these attacks for two years now. I have the best gastro doctor in the world. Prescribed Levsin .125 mg tablets that dissolve under your tongue at the onset of pain. Pain gone in a minute or two. Miracle drug!! Had to share this with everyone. Watch the STRESS and what you eat.
barbgldoen 4 months ago
Please join our group: Whipple Surgery Survivor Group on Facebook. We are all either whipple patients or family of whipple patients. We are trying to get Post Whipple Attack patients together so we can find an answer. Please join us and tell us your story.
TheWhippleSS 5 months ago
Sometimes the attacks are so strong that i go to hospital and stay there for 10 days to make a pain therapy with morphine intravenously. This happens averagely 1 till 2 times per year.
Thanks good i live in Germany where evryone has a help insurance. It is law here. So nobody has to be worried because of the cost of the medicine and the hospital staying.
And it´s no problem here to get a morphine prescription.
I wish you the best!
DIETMARHEU 6 months ago
Yes, this pain is hell on earth.
I had a Whipple operation in 2004. The head of the Pancreas and the gallbladder were removed.
2 Months later the pain attacks came back. The doctors said, it´s a high grade Chronic pancreatitis.
If i have a pain attack, i need up to 14 pills per 20 milligrams of morphine (SEVREDOL20) at one day. Normally this helps, so i have always a box of morphine pills at home. Of course, morphine has a lot of side effects but everything is better than this horror of pain.
DIETMARHEU 6 months ago
I just started a Whipple Surgery Survivors Facebook page. Please go to it and click the like button at the top. This page is devoted to all who have had the whipple, pancreatic cancer or other tumors that led them to have the Whipple. We need to unite on this and then bring it to the attention of researchers to find an answer.
Facebook: Whipple Surgery Survivor
rayala333 8 months ago
wow I have stage 3 pancreatic cancer and had a major whipple, I always wonderd if other people had what I call pain attacks. Just like the vid, the screaming in agony and pain. Not as often as they use to be, but man the pain is like hyper ventilating and crying out screaming and dizzy from like passing out. I take two pain meds, 30mg morphine and dilaudid.
keithstartz 8 months ago
I thought I was alone! Would not wish this on anyone! I had the Whipple in Nov. 2008 with complications, they accidently cut the portal vein, bled out, heart attack, internal bleeding, 32 transfusions, blood disorder, 70% of spleen removed & still have occlusion in portal vein, eating has gotten increasingly difficult and pain is daily, horrible after eating! God bless you for posting this! I didn't know there were others out there! Hopefully doctors will take notice. This is real!!
kkbelvin 8 months ago
My husband John had the whipple, the pain is undescribable...your grownings probably don't do it justice. You can see our story at the link below. I have written a book about how this changes your whole life! "Why Us God" is in publication, once printed and sold, each book will donate funds to National Pancreas Foundation for research/cures...here is the link
won't let me post a link, go to my page CDBICDB
cdbicdb 8 months ago
My husband John had the whipple, the pain is undescribable...your grownings probably don't do it justice. You can see our story at the link below. I have written a book about how this changes your whole life! "Why Us God" is in publication, once printed and sold, each book will donate funds to National Pancreas Foundation for research/cures...here is the link
cdbicdb 8 months ago
This is painful to even watch.... I have been there - pancreatitis for over 45 years Chronic for about 12 of them years. On February 22nd, 2008 I underwent the Total Pancreatectomy with Autolgous Islet Cell Transplant. I got a measure of my life back!! I stil have Sphincter of Oddi Dysfunction and the pain is just as bad as pancreatitis - but itis no longer 24/7 Two ERCPs so far since my surgery to clean out my bile duct. You are in my prayers and hope you find relief too.
ReeAnnBetts 1 year ago
I also had the Whipple in 2003. Pancreatic Divism is what they finally diagnosed. after 12 pancreatitis attacks and stents several times. The surgery was done at MUSC-Charleston,SC. It was horrific. I had abscess and they had to go back in 2 days after surgery. The puking, the pain, the drains, the TPN...and to put shit on a stick, I got meningitis 6 months after surgery. I know the pain you go through. I also have had 8 lithotripsy procedures and tubes in both kidneys for stones. I understand!
rrw65 1 year ago
I have not had a Whipple but experience similar pain. Started out as pancreatitis 10 years ago but in the last 5 yrs, my liver enzymes go up in the 1000's and stays up 2-4 days. Pain episodes are 20 min to several days. Sometimes I am hospitalized on IV demerol. Also have oral demerol to take at home. I have had every med test my oncologist can devise and no answers. Seems like I'm the only 1 with this problem, but I can tell from your video the pain is the same. Anyone have similar prob?
TheLynnenoel 1 year ago
my mom didnt have a whipple but she had her gullbladder taken out and after a month she gets the same pain kinda scary took her to the hospital and they didnt find anything also lasts about few minutes anyone know anything that can help
Cuauhtli47 1 year ago
I have been having these attacks for 8 years (since my whipple in 02). I am only 26 and sick of these happening. I dont have the option of using that patch seeings how its a narcotic and my work would test me for that. Guess I will keep searching for something else to ease my pains. I thought I was the only one who was having this pain, I wish this on nobody and I do feel your pain.
Kenai2844 1 year ago
I have a duodenal ulcer and chronic pancreatitis, since early this year and have had the Whipple procedure recommended as the answer. I am so frightened. I've had countless endoscopies, cat scans, etc, but they can't find anything. I really don't want to have this surgery.
MissLeigh78 1 year ago
Sorry i had problems with sending message and the ph number is incorrect. Call me on 00447737432639
Warrenburmaz 1 year ago
After my whipple my Radiation Oncologist recommended Xanax .25mg once a day in the AM to combat intense intestinal pain spasms. That made all the difference to me. I might have slight issues once every couple of weeks now instead of daily.
cowmoomoo99 1 year ago
I'm not sure what to do about pain meds. 'm very limited.I have just learned to roll with the pain, and if I die during it, then so be it. I've had 3 children, lumbar fusion,colon resection, cervical fusion, hysterectomy, and other surgeries, and all of these, together do not compare to this pain.I am rendered totally helpless. There is nothing that can do and I sometimes beg for death to come, as it is so bad. I don't feel I will ever be the same again. I try to keep a smile on my face though.
GrannyFromUSA 1 year ago
I'm almost speechless. I had the whipple, then complications, ruptured spleen and then a total of 6 surgeries, 8 pints of blood, etc. in the hospital mostly on the respirator. Then I come home on pain meds, then off after a month or so. THEN THE PAIN I JUST SEEN IN THE VIDEO. Tks. for taping it. That's what it is! I feel as though I will die. I can't even get up. All I can do is roll w/the pain, scream, moan, yell etc. I hate it. I have NO ANSWERS EITHER! This lasts up to 4-5 min. then gone.
GrannyFromUSA 1 year ago
@GrannyFromUSA
That's what happened to me as soon as I started taking less pain meds the attacks started... now I'm on the fentanyl and they are a lot less frequent... At least you know your not the only one, maybe show the video to your Dr. and tell him about the fentanyl... it works.... better than dealing with those attacks...
harvetized 1 year ago
@harvetized
If the pains continue and become more frequent, I will not be able to live this way. Something will have to be done. I am able to tolerate a LOT of pain, but this whips me bad. I am going to send my doc the video. I've viewed some of the posts. GAS? Excuse me, I can't buy that. Walk around? I cannot make a move to do anything, my whole body goes into contortions with and during the pain. Walk around? I cannot do anything but what harvetized is doing. You are trapped with the pain
GrannyFromUSA 1 year ago
@GrannyFromUSA
these quote say it the best...
"it has been compared to "wild dogs ripping your bowels apart while still arrive" my Whipple was in 2000...I only wish that the "dogs" return a lot less frequently...."
harvetized 1 year ago
@harvetized My name is Warren. I have tried to contact you before. Please contact me. I have exactly the same pain attacks that I swear will kill me one day they are so intense but I have found an answer after 10 years. Med profs still don't know what it is but a very clever gastro surgeon in London has got me these magic pills that I keep on me at all times. They work in 20 -30 seconds of me taking them. I would love to speak with you. Please call me 004437432639 or wburmaz@hotmail.com
Warrenburmaz 1 year ago
@harvetized My name is Warren. I have tried to contact you before. Please contact me. I have exactly the same pain attacks that I swear will kill me one day they are so intense but I have found an answer after 10 years. Med profs still don't know what it is but a very clever gastro surgeon in London has got me these magic pills that I keep on me at all times. They work in 20 -30 seconds of me taking them. I would love to speak with you. Please call me 004437432639 or wburmaz@hotmail.com
Warrenburmaz 1 year ago
you should lay down flat after eating. Also, research an appropriate diet for your condition and stick to it. You may also want to ask your doctor about the antacid medication with regards to the dosage, when is the best time to take it (before, after, or with meals) And if you experience shoulder blade pain, that is gas pain that radiates. Treat that by walking around to break up the gas. I hope this helps you and good luck to you.
pksdgchronik 1 year ago
@pksdgchronik
lay down flat? I cant lay down flat on either side, front or back. Eating is painful as well! Referred 'gas pain' in the shoulder is common immediately following surgery, not years later. I've been told that the pain in the shoulder following eating is referred pain from the diaphram or the Phrenic N., most likely damaged during surgery. My name is Steve, & I had the Whip cracked on me 19mo. ago and I still suffer. w/out the 60mg of morphine ER & oxycodone IR for accute attac
TheStprth 10 months ago
@TheStprth
....attacks I am In such horrific pain that I cant even think. I had spent many days & nights w/out meds in a hot bath writhing in pain before I got some help w/pain management. I would drop weight, loosing 10/15lbs.@ a time not eating for weeks due to the pain it would cause. My life was reduced to trying to get sleep proped up on the couch and doing nothing all day but sitting around & watching TV. with meds things are better but still limiting and I am still seeking relief. My
TheStprth 10 months ago
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@TheStprth
....attacks I am In such horrific pain that I cant even think. I had spent many days & nights w/out meds in a hot bath writhing in pain before I got some help w/pain management. I would drop weight, loosing 10/15lbs.@ a time not eating for weeks due to the pain it would cause. My life was reduced to trying to get sleep proped up on the couch and doing nothing all day but sitting around & watching TV. with meds things are better but still limiting and I am still seeking relief. My
TheStprth 10 months ago
@TheStprth
Dr. has mentioned a 'celiac block' wich kills the nerve center known as the celiac plexus. I am considering this w/hopes of reducing the use of meds to cope w/the pain but am apprehensive about doing anything else invasive that may leave me in worse shape than I already am. Has anyone heard of or perhaps tried this procedure? If so what was the outcome? I am anxious to know! I feel deeply and personally the pain that we all suffer with but in a way it was a comfort to me to know my
TheStprth 10 months ago
@TheStprth
hell is at least not a loney hell:-( I hope and pray for all of us to find some relief from the pain we have had forced upon us and I'm happy that we have some place where we can feel we are understood at the very least. Take whatever you can get, I say.
Gas pain? You sound like a Dr. or an unempathetic nurse! Let me know which one.
TheStprth 10 months ago
@TheStprth
read my comments from bottom to top. opps, they're backward?
TheStprth 10 months ago
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read my comments from Bottom to Top.....ooops, they're backward?
TheStprth 10 months ago
Hey I am so sorry that you experience such chronic and harsh pain. I am a nursing student and from what I have learned about the Whipple procedure, what you are experiencing can be related to increased pressure within the abdomen caused by gas, overeating, certain foods. Also, Whipple patients experience dumping syndrome. Because your anatomy has changed, specifically the sphincter at the end of your stomach that controls emptying has been removed, this can cause many probs.
pksdgchronik 1 year ago
I am a going on 10 year survivor of Stage 3/Positive nodes, and I have a daily ritual of extreme bowel pain. Sometimes I lay on the bathroom floor, with a towel over by head so my wife and kids cannot hear me moan and cry. At times I pray to die. I take Methadone and Valium,but it ruins my quality of life. I feel so much for the guy in the video. They say I'm cancer free..I say cancer lite. I continue to lose weight. I started at 186lbs, am now 119lbs. Pain can break the strongest man.
Rain44maker 1 year ago
I just came across your video..I too have spasms in my stomach not as bad as you have but it is there. I had the whipple surgery 3yrs ago and I still have a tough time eating sometimes I'm fine and the food doesn't bother me and sometimes when I eat I get a stomach ache and naseau and also I get burning from my rib gage right up my throat and my mouth & tongue will burn. I take 40mg of Omazerpole and tamazapam. I all so get pain coming up in between my shoulder blades. No cnacer just chronic Pan
SuperSmuckers 1 year ago
@SuperSmuckers i am currently in nursing school and the pain you are experiencing that is in your shoulder blades is related to gas. the best way to get rid of it is to walk around to help pass the gas.
pksdgchronik 1 year ago
Hi there, My name is Naomi, I was 32 when I had my full whipples(13th July 2007 in Royal North Shore Hospital). My tumor was quite large 8 by 9 by 9cm and most of the head of my Pancreas was removed. I still have those attacks 3 years later. My attacks began when I started to eat again after my Op. I found that everytime I do not get my enzymes correct and or eat too much and not go to the toilet the day before is when my attacks happen. Usually in the morning on an empty stomach,
polelandfitness 1 year ago
I had this whipple in Feb 2010. At the UofM Center in Ann Arbor. I have only had severe intestinal cramping and gas. I take 15mg of Reglan 4 times a day. That helped a lot. But if the cramps get to bad I add 20mg Donnatol. So far I have been very active with only fatigue if I push myself to hard. I also recommend a good Gastroenterologest in your area.
Keep your chin up !
cowmoomoo99 1 year ago
My God... That's absolutely horrible to watch! I hope you find a doctor WHO CARES! You need to be on at least 50mcg of Fentanyl! I have severe Panic Disorder, and that right there of you in agony, reminds me of my Panic Attacks! It makes my hernias in my lower spine multiply! That's terrible! (Not the Video). I'm prescribed Klonopin (Clonazepam) 2mg & Restoril (Temazepam) 30mg. I use 100mcg Fentanyl Patches (not prescribed), and it works Great! It RIDS my depression! I get "Calm Energy" too! GL!
KarbineKyle 1 year ago
it has been compared to "wild dogs ripping your bowels apart while still arrive" my Whipple was in 2000...I only wish that the "dogs" return a lot less frequently....
pluggan1 1 year ago
couldn't have said it any better
harvetized 1 year ago
its a relief to hear that alone as I was afraid you would know too well or discount it entirely. While I watched your body response I was crying for you to get fetal or even on your knees, which you sorrta did towards the third half/ but I find my self in all sorts of positions when its over, perhaps what an epileptic feels after seizure...I donno....For folks around it must really be scary, perhaps just treat us as we were ..epilitics do nothing but remove objects that might be in our way!
pluggan1 1 year ago
my tumour was also "benign"...had no capacity to develop to Stage 2....pus filled with necrotic tissue ...pancreas enzymes are programmed to auto digest which they start to do with your own cells when they are blocked...In our case the PC has the sever pain of chronic pancreatitis..Most other "cancers" of the pancreas (carcinomas) announce themselves with jaundice...hepatic liver infection....for those unfortunates it's too late...in Canada last year 3600 of 3700 PC cases did not make it.
pluggan1 1 year ago
You seem to know a lot about it, is there a cure for these attacks? Why are we getting them? I didn't have these before surgery...
harvetized 1 year ago
No cure, but constant food adjustment, adjust coffee intake until the body wakes up, some simple stretches or a short walk can adjust your new suspension of your gut, remember, your gut has lost its natural "Hanger" and after sleep your new hanger doesn't drop things(organs glands) as they should. Causes seem to be over-introroduction of gases in stomach which cause it to swell, touch the damaged gland making it inflamed "itis" ....the pancreas does not handle inflammation well....
pluggan1 1 year ago
Gas is caused by the flora and by your tone, you took offense to my statement. I was doubled over in pain, last night. I did not mean to suggest you were not in severe pain. According to my surgeon, this is now our new normal. There are things we love to eat, that we should never touch, like the steamed broccoli I had with my dinner last night. Not only did I suffer greatly last night from the pain, this morning brings the explosive diahrea! We, post whipple, will never be the same.
JustJill1 1 year ago
I'm not offended at all. Let me ask you a question, when you say you are doubled over in pain how long does it last? Can you breath? Does it fell like you are going to die? Do you feel like you are going to pass out? Is it the most pain you have ever felt in your life? Like I said I had my gas after I got home but when my doctors started to ween my off the pain meds I started having these spasms. I hope you never experience what I live with, you are right we are never the same....
harvetized 1 year ago
I found this video just before or right after my whipple, and it scared the hell out of me. My whipple was Sept 08, I have to take the enzymes to help with digestion, but it does not help with the bloating and gas pains. Yes, I do believe this is severe gas being portrayed here. I sit in hot bath several times per day for relief.
JustJill1 1 year ago
it has nothing to do with gas, I only had gas right after I got home. It's a spasm of some kind that takes me to places I have never been and never want to go again.
harvetized 1 year ago
My Dad just had a successful Whipple Done... He hasn't had these kind of spasm yet, but I very happy to hear you found something that helped and am glad you put this info out there. I hope you're doing well.
jiggystyles 2 years ago
My father passed away on 11/16/09 due to a finding of pancreatic cancer, he had the whipple procedure done and after that he had some infection due to the pancreas juices leaking out.. I would have loved him not to have the whipple procedure and lived the way your brother Donnie did.. Surrounded by his loved ones.. !!!.. He never got the chance to meet his 2nd grandchild, but he met his first one
One thing is at least he didn't suffer the pain that you did... I guess he just knew.
bellajazmyne 2 years ago
So sorry to hear that. Best wishes.
Steve
harvetized 1 year ago
My father passed away 2 days ago after having the whipple procedure, about 3 weeks ago. He collapsed severely haemorrhaging from the mouth and rectum. They gave him 13 bags of blood but could'nt stop it, put him on a life support machine never want anybody to see that it was horrific the poor poor man the amout of blood loss was terrible.
TheWillow84 1 year ago
It kills and pains me that these doctors can't find another way in order to get to the pancreas and have them live for at least a longer peroid of time. I find out about two months later that there is a center somewhere in Iowa or Idaho something like treatments for specifically for pancreatic cancer patients and they live longer.
bellajazmyne 1 year ago
It pains me that no one could have suggested this and not have my father pass away so abruptly, so sudden. One thing is I hear through this web chat, that you suffer while you are post whipple and for one thing is I guess God didn't want him to suffer after the surgery.
bellajazmyne 1 year ago
My God, I am so glad found this video, Thank you for sharing, I feel for you , My fiance had the whipple in May 2006, He still suffers daily with the intense pain, The doctors say that's just what he is left with That his food goes down and has to take a left and don't know it so it sits there & rots. He takes pancrease and lives on yogurt, I wish I could help him. The doctors sure won't. He is 47. someone please give me some suggestions,
kpie012 2 years ago
Not sure I buy that diagnoses it sounds like they don't know whats wrong (like my doctors) and through that at you. i would go to a pain management clinic and ask them for help. Maybe get on the patch.
harvetized 2 years ago
I had the Whipple at Moffitt on 10/15/07 (Dr. Hodul) and I am doing great EXCEPT for sudden onset pain that stars in my abdominal area and works its way through my chest and back. I call it "my heart attack pain". Feels like a beachball trying to get out of my chest. My surgeon has no idea what it is and I have had several tests by my gastro doc and all is negative. The pain only lasts about 45 seconds but it totally takes my breath away and leaves me drained. I also get clammy when it comes on
survivorgirl101507 2 years ago
Dad is really good! He went from a 2X to a MEdium! He finally is weighing 180 now after being 150 for several months. He still takes meds to make his poop consistant. How r u? Happy New Year! I know its been rough for us all--economy, health, etc...Thanks for your support. You pulled us through! God speed!
bellybybethsheba 2 years ago
Damnnn your video brought tears to my eyes!!! I know exactly what your going through. Did you have a hot sweat right after that attack? I am in recovery of a Whipples procedure at the moment, had mine on May 1st 2009... How long does all the pain last for??? Does that tight feeling in your lower chest ever go away??
SHAKEyaCANS19 2 years ago
That was the longest attack I had but not the most painful. I've had some that were so bad I couldn't breath and I thought I was going to pass out. I could push air out but couldn't suck air in... Very scary!! for me and my wife. It starts with a burning sensation at the lower sternum then shoots across my left side into my back then all hell brakes lose. I hope for your sake you never have to deal with this, it is the most pain! I have ever felt and I wouldn't wish it on my worst enemy
harvetized 2 years ago
Thanks for asking Harvey. dad goes BACK to Moffitt again tomorrow. He has changed digestion meds twice now, this last one made him naesuaed and vomitted. He has lost tons of weight and now coughs alot. Experiences fevers everyday 2-6pm up to 101-98. He goes back in again for CAT scans and they open up the incisions again to drain yet more bile from inside. STILL has bile bag out in stomach and stint to heart (had abnormal palpitations after surgery) in arm for IVS, etc.. Worried. how r u?
bellybybethsheba 2 years ago
Harveysized! I feel your pain! My Dad goes to MOffit in Tampa for his procedure next Friday and we really didnt know what to expect. This is just excrusiating pain to even watch. He is 70 and they think he has tumors. I will keep you posted! Hope you are better now!
bellybybethsheba 2 years ago
It's been a month, I was wondering how is your dad doing?
harvetized 2 years ago
does ur dad have pancreatic cancer.. This is just my opinion .. please don't do the procedure.. check and see if he can go to a specialist for pancreatic cancer.. (now this is if he has pancreatic cancer) because you don't want what happened to me to happen to you...
bellajazmyne 1 year ago
oh ooops!! I didn't see how long ago, how is your dad doing?
bellajazmyne 1 year ago
I had the Whipple at Jackson Mem. in September of 2006. I had a neuroendocrine tumor. The "spasms" started a month or so after surgery and were very intense. Mine usually lasted for 30 seconds to a few minutes. I still get them from time to time, but the attacks are not as near as intense as when I first started getting them. There is a Yahoo group that deals with pancreatic cancer. This group is a great resource if you are looking for answers or comparisons to others with similar symptoms.
natalielila 2 years ago
I had the whipple done 3 years ago, I am now a full blown diabetic, and suffer everyday with things that docs dont know what they are. I am glad to know that I am not alone in this. thanks for posting.
fordwmn115 2 years ago
I had a whipple in 1999 and I STILL have these "muscle spasms". My surgeon said it is the nerves growing back. They hurt like heck and painful. I fell down the stairs on Sun. b/c one came on so fast and strong that my legs buckled. Afterwards, you feel like you've run a marathon ! You're drained of all energy ! I'm so sorry you experience this as I do, but when you feel them come on... lie down quickly and relax and the pain won't be as bad as if you tense up ! When was your whipple?
lexielaurence 2 years ago
it was may of 2008....
just how long does it take for nerves to repair themselves? I had some nerves killed in my back and they grew back in a year...
harvetized 2 years ago
I was in the hosp. for 3 wks. and about 2 wks. after being home I had my first "spasm" which scared me b/c it really constricted my lungs. I don't have that answer as to repair. Every body is different. In Aug. it'll be 10 yrs. since my surgery. I have nausea almost daily and have IBS b/c of the surgery as well. You'll find out what you can and can't eat. Get your doc to prescribe Creon. Its a digestive enzyme which helps in digestion and nausea. Docusate sodium and fiber pills help too
lexielaurence 2 years ago
I found out what the spasms are not so long ago, my doctor said it is a build up of flora in the bowel, since I changed my diet I hardley ever have them now, I had my Whipples on the 1st of May this year so im still in lost of pain, but least the spasms are stopped. Just reading over everyones comments... Im glad im not alone tbh, this is the hardest thing Ive ever had to deal with..
SHAKEyaCANS19 2 years ago
I know someone who had the whipple done over summer. He spent 27 days in the hospital and suffered a lot on the recovery. It's damn scary.
FulinYu 3 years ago
My dad had a whipple proceedure done. And I can't remember if he ever had attacks like thia or not. He was in pain. But I don't remember if it was to this degree or not.
chadloflin20 3 years ago
can you massage the area of spasm?? does that help?
hotlez008 3 years ago
no way... it feels like I am being pull apart.. The most pain I have ever felt in my life...
harvetized 3 years ago
Sorry that I haven't post in a while....
For those who suffer from these attacks after a Whipple have your doctor start you on Fentanyl Patches at 50 MCG/HR every 48 hours...
I have been on them for a few months and have not had one attack, they got to the point where I was having 5 to 7 a night... had a few while driving..
I met a woman who has had these attacks for the past 3 years and she is also on the fentanyl Patch with great results....
harvetized 3 years ago
Steve, my husband just had this surgery on the 14th. We are back home now with g-tube & the drain. My husb is only 42 & is devistated with all the is going on. I am scared now to get those attacks back. Why did you have this done? Did you have a cyst or cancer?
NekoKitty14 3 years ago
I had a tumor on the head of my pancreas but it was not cancer thank god.
I sent you a message with my phone number on it so you can call me....
harvetized 3 years ago
I work with a woman who had a whipple procedure done and suffers from very similar attacks. I called her at work when I found this video so she could view it too. It doesn't make her attacks any less unbearable, but I think that it is helpful to find out that there is at least one other person out there who knows what she's going through. Her doctors don't have a clue and I don't think they realize the severity of her attacks.
karenannharrington 3 years ago
I would like to help your friend.... I sent you a email here on youtubes.
harvetized 3 years ago
Oh my God this is horrible. How long ago did you have the surgery? My MOm is also scheduled for this procedure but not sure she'll procede. Wish I could email you.
karyn526 3 years ago
my god, that must be hell to have to bare twice a day! I hope the underlying condition that was the indication for your procedure is better...you are spot on empowerqueen, That is typical of colicky abdominal pain which often suggests the peristaltic contractions of the vicera (gut, ureter, bile duct) against a blockage. From the distribution of the pain, it may be biliary colic or following the procedure there may be adhesions and or scarring that prevents bowel from working smoothly.
sabmu498 3 years ago
Hey Guys, thats alot of pain! It almost appears as if your having a contraction. I will keep you in prayer and send you healing thoughts,Grace be with you... Love Always Dan & Klaw
empowerqueen 3 years ago