Post Whipple Recovery Abdominal Pain

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RE: Post Whipple Recovery Abdominal Pain

by IrwinM on Tue Sep 05, 2017 12:55 PM

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Wow! Sounds like you've done well! I'm always happy to hear good news. You may need to talk to your docs about doing a PET scan. More accurate than a CAT scan with contrast. Diet may be a factor. Seems like my digestive tract is always evolving. As for me, I had Whipple surgery almost 2 yrs. ago. Things have been pretty good until last month when a Pet scan revealed a small Neuroendocrine tumor on a Lymph Node in my Pancreas. Doctors initially wanted to remove it Laproscopicly but couldn't locate its exact location so put me on Lanreotide which is a monthly injection. Lanreotide is a hormone naturally produced in the body. Apparently our bodies don't produce enough to shrink or destroy Neuroendocrine tumors so these monthly injections are suppose to help. We'll see. I'm assuming your cancer was Neuroendocrine also. A slow growing cancer and very treatable. Anyway I hope you find an answer to your pain. Keep me updated please. God Bless

RE: Post Whipple Recovery Abdominal Pain

by Sistersharon on Tue Sep 05, 2017 02:40 PM

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On Sep 05, 2017 12:55 PM IrwinM wrote:

Wow! Sounds like you've done well! I'm always happy to hear good news. You may need to talk to your docs about doing a PET scan. More accurate than a CAT scan with contrast. Diet may be a factor. Seems like my digestive tract is always evolving. As for me, I had Whipple surgery almost 2 yrs. ago. Things have been pretty good until last month when a Pet scan revealed a small Neuroendocrine tumor on a Lymph Node in my Pancreas. Doctors initially wanted to remove it Laproscopicly but couldn't locate its exact location so put me on Lanreotide which is a monthly injection. Lanreotide is a hormone naturally produced in the body. Apparently our bodies don't produce enough to shrink or destroy Neuroendocrine tumors so these monthly injections are suppose to help. We'll see. I'm assuming your cancer was Neuroendocrine also. A slow growing cancer and very treatable. Anyway I hope you find an answer to your pain. Keep me updated please. God Bless

I will keep you in my prayers. My Whipple was only 3 months ago but so far they believe it was in the orecancer stage.  No more cancer   treatment needed. The pain is getting more manageable but the awful abdominal swelling is hard to manage. I am greatful to have a chance to see my grandson grow up.  God Bless.   Sharon

RE: Post Whipple Recovery Abdominal Pain

by IrwinM on Wed Sep 06, 2017 01:57 PM

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The swelling will go away. You'll have your girlish figure back in no time. It takes a while. Just imagine all the disruption and reconfiguration your abdomen area experienced during surgery.

RE: Post Whipple Recovery Abdominal Pain

by Sistersharon on Wed Sep 06, 2017 04:21 PM

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On Sep 06, 2017 1:57 PM IrwinM wrote:

The swelling will go away. You'll have your girlish figure back in no time. It takes a while. Just imagine all the disruption and reconfiguration your abdomen area experienced during surgery.

Thanks Irwin. I know you are right about the trauma caused from surgery. It's healing slowly. I have never experienced this type of fluid build up but then again I never had this type of surgery before!! Hope you are doing well.  Staysafe.  We are preparing for the approaching Hurricane right now and praying that the storm turns away from Florida and heads away from our coast line.  God Bless.  Sharon

RE: Post Whipple Recovery Abdominal Pain

by blmiller on Fri Mar 16, 2018 12:56 AM

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Hi Rich,

I had a whipple in 2011, I still have what I call "Pain Attacks" these are very painful cramping of the pancrease (I think) and they last for three minutes. I have heard of others that have them and they last for longer. Some Doctors don't know about these and some do, they will give you pain meds to help, but, I have found that just trying to relax and breath through them works for me.

They were more frequent in the begining and I only have one or two a year now.

Good Luck!

RE: Post Whipple Recovery Abdominal Pain

by blmiller on Fri Mar 16, 2018 12:59 AM

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What support group for whipple survivors do you participate with? I need one. I keep ending up in the hospital with Pancreatitis. Thank you

RE: Post Whipple Recovery Abdominal Pain

by MPaulson on Fri Oct 12, 2018 04:25 PM

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Everyone is different, so different things may cause Whipple attacks with each of us. Some endur them forever while some never have them. They can also become less frequent with time. What I have noticed: Excess sugar can be an issue, as well as fatty foods. If I drink a vanilla latte in the morning on an empty stomach, I have an attack 100% of the time within 1 hour. If I have one with food, I'll have one 70-80% of the time. So, I stopped drinking them. I don't think it is dairy, as I get a fair amount of dairy elsewhere. It could be the acidity from the espresso and or a combination of everything. Alcohol sets-off some, especially red wine. One thing I started doing is taking 6 each psyllium fiber capsules prior to each meal. This has helped me in many ways from regularity to using less creon and reducing the severity of my attacks. Hope this helps! Good luck.

RE: Post Whipple Recovery Abdominal Pain

by Sistersharon on Fri Oct 12, 2018 09:04 PM

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On Oct 12, 2018 4:25 PM MPaulson wrote:

Everyone is different, so different things may cause Whipple attacks with each of us. Some endur them forever while some never have them. They can also become less frequent with time. What I have noticed: Excess sugar can be an issue, as well as fatty foods. If I drink a vanilla latte in the morning on an empty stomach, I have an attack 100% of the time within 1 hour. If I have one with food, I'll have one 70-80% of the time. So, I stopped drinking them. I don't think it is dairy, as I get a fair amount of dairy elsewhere. It could be the acidity from the espresso and or a combination of everything. Alcohol sets-off some, especially red wine. One thing I started doing is taking 6 each psyllium fiber capsules prior to each meal. This has helped me in many ways from regularity to using less creon and reducing the severity of my attacks. Hope this helps! Good luck.

Hello. I read your post about Whipple pain and I too suffer from mystery attacks. My Whipple was June 6, 2017. VA docs say it was pre-cancer and my 1 year scan was clear. However life, post whipple, has been tough. I have frequent abdominal & back pain with acute Whipple attacks bi-eeekly. I increased my creon but I still have the pain and digestive issues. Eating is not a pleasant experience.  Hopefully the belly pain & pressure will ease with time. Thanks for sharing your experience. Any advice you and our readers offer is welcome. (I'm a 67 year old Viet Nam era Army Vet but this battle has me down.) Peace,  Sharon

RE: Post Whipple Recovery Abdominal Pain

by bushy on Mon Oct 15, 2018 09:06 PM

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Sister Sharon I am 8 years post Whipple I have been fortunate I don’t suffer from Whipple attacks I do have continuing pain from the surgery however,,digestive issues and pressure do resolve over time,it took me quite a long time for it to settle down,I know it’s hard hopefully over time it will improve,I can now eat most foods without issues.hope you get the same result.

RE: Post Whipple Recovery Abdominal Pain

by Sistersharon on Tue Oct 16, 2018 12:57 PM

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On Oct 15, 2018 9:06 PM bushy wrote:

Sister Sharon I am 8 years post Whipple I have been fortunate I don’t suffer from Whipple attacks I do have continuing pain from the surgery however,,digestive issues and pressure do resolve over time,it took me quite a long time for it to settle down,I know it’s hard hopefully over time it will improve,I can now eat most foods without issues.hope "" target="_blank" rel="nofollow">http://issues.hope " target="_blank" rel="nofollow">issues.hope you get the same result.

I take comfort from your experience and I appreciate you sharing it. Hopefully I will have a similar outcome. I welcome any tips for healing and adapting to life post-whipple that you and our readers can offer. Thanks again

 Be well,   Sharon

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