Seven Months Post Whipple Question?

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Seven Months Post Whipple Question?

by VickiH on Wed Sep 16, 2009 12:00 AM

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I had the Whipple procedure on 02/12/09 and am doing fairly well. I am very grateful to be alive and able to work. My biggest issue right now is an embarrassing one. I find that no matter what I eat, I constantly suffer from excessive gas.
I take Creon 20 before each meal which has helped with digestion and dumping, but this gas problem is really an issue for me. I work in a doctor's office and am around people all day. Does any one else have this issue? My doctor didn't offer any solutions except to give me a list of foods that don't cause gas--however, I didn't find that to be helpful at all. Any suggestions would be greatly appreciated.
This message board has been a great support to me over the past months. God bless you all!

RE: Seven Months Post Whipple Question?

by nancyjpa on Wed Sep 16, 2009 12:00 AM

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Vicki,

     My husband has the same problem.  His surgery was April 29, 2009.  He is retired, so at least he doesn't have to deal with it at work.  It seemed to get a lot worse during  adjuvant chemo/radiation which he just completed.   He still has a lot of stomach issues.  After the surgery he was O.K. until the chemo started.  Did you have any chemo?  His doctor suggested GasX which didn't help at all.  Nancy

RE: Seven Months Post Whipple Question?

by Joan_l_3 on Wed Sep 16, 2009 12:00 AM

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Hi Vicki,

Congratulations on being one of the lucky few able to have Whipple surgery.  Are you sure you are taking enough Creon?  Most Whipple survivors have to take multiple enzyme capsules, beginning at the start of the meal and continuing throughout the entire meal.  You will no doubt need to experiment to find out how many capsules work best for you.  My husband takes 2 at the start, 2 more in the middle and 2 more close to the end of the meal.  He also takes at least 1 capsule any time he eats any food.  

Have you had adjuvant radiation and chemotherapy; these are considered to be the standard of care now.  If you haven't had these, you may be more comfortable with a second opinion at one of the respected top pc centers such as M. D. Anderson, Columbia in NYC or Johns Hopkins.

Wishing you ciontinued good recovery.

Joan L

PS  Suggest you visit the online support board at the Johns Hopkins website.  Good people, supportive, great info, excellent place to vent.

RE: Seven Months Post Whipple Question?

by AliveInOldeTown on Wed Sep 16, 2009 12:00 AM

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Vicky,

I went through similar problems after returning to work after surgery.  And yes it is very embarrassing.

Much of the problems I had with gas got better when I was prescribed Creon.  At first, I took Creon with "meals".  But since I was told to "graze", I ate frequently throughout the day.  So I still had problems with gas even though I was taking enzymes because I wasn't taking them every time I ate something.

Here is what worked for me.  I was given both Creon 10 and Creon 20 in the beginning.  I was told to take as many as needed to control symptoms.  What finally worked best was to get prescriptions only for Creon 10.  With a normal meal, I need to take two to three Creon 10s.  The most effective way to take them is take one after the first bite of food, and then one toward the middle if it is a light meal. For heavier meals, take one at beginning, one at middle and one at the end of the meal.  I found I must also take one Creon if I eat anything between meals. Even if it is just an apple or banana. 

Some foods will cause problems with gas, and it may not be the ones on the list the doctor gave you.  Foods that never bothered me before surgery did afterwards, although now I'm able to eat most foods.  For the first year or so, I found I was much more sensitive to many foods.  And then there is the strange phenomenon of going for months with no trouble, and then poof!, a particular food causes severe gas and gastric distress.  I have learned to avoid the particular food for a while and then try it again.  Usually I find with time, I can eat the problem food with no troubles .  The foods I have had to limit permanently are milk products, caffiene, and nutmeats.  I can have all in limited amounts without problems, just not too much at any one meal. Currently, I am having problems with clams (I love liguine with clam sauce). Go figure :~).

I was prescribed Nexium following surgery, and while this is not "scientific", I found I had less problems with gas once I stopped taking them.  Some of the folks on the Johns Hopkins discussion board say they are helped by taking products like Beano with meals, in addition to the pancreatic enzymes like Creon.  I haven't tried it because I can now go for months without serious problems with gas.  I'm like anyone else, if I eat lots of beans, I will have gas. Just the normal kind though, not the painful explosive gas problems I had at first, and that still happen with the strange phenomenon I mentioned above. Thankfully, those episodes are rare now.   

It takes time, but hopefully you will be able to figure out what works for you.  Hope something in this long post helps.

 

 

On 9/16/2009 VickiH wrote:

I had the Whipple procedure on 02/12/09 and am doing fairly well. I am very grateful to be alive and able to work. My biggest issue right now is an embarrassing one. I find that no matter what I eat, I constantly suffer from excessive gas.
I take Creon 20 before each meal which has helped with digestion and dumping, but this gas problem is really an issue for me. I work in a doctor's office and am around people all day. Does any one else have this issue? My doctor didn't offer any solutions except to give me a list of foods that don't cause gas--however, I didn't find that to be helpful at all. Any suggestions would be greatly appreciated.
This message board has been a great support to me over the past months. God bless you all!

 

RE: Seven Months Post Whipple Question?

by VickiH on Wed Sep 16, 2009 12:00 AM

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Hi, I hope that your husband is doing well and recovering from this very difficult procedure. I was so fortunate. I did not have to have the chemotherapy. My tumor was benign and there the lymph nodes were clear. It was defined as a neuroendocrine neoplasm. My 6 month follow up CT scan was also clear. I am technically "cured" at this point. I am just trying to deal with the after effects of the Whipple. I now have to take small doses of insulin. I have lost 50+ pounds and am maintaining that weight. I do have difficulty with some foods. I cannot eat anything with any spice to it at all. I do not tolerate popcorn, nuts, etc. High sugar foods like icing, rich cheesecake, etc., make me feel sick. I can tolerate all that. If I can just find a remedy for this gas! I'm thinking of trying charcoal capsules... I will keep you all in my prayers, Thanks Vicki

RE: Seven Months Post Whipple Question?

by VickiH on Wed Sep 16, 2009 12:00 AM

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Thank you for sharing your experiences with me. I've only been taking one Creon 20 with meals. I will try taking more to see what helps. I was thinking of trying Charcoal capsules, but I'm a little leary about that at this point. It's nice to hear that you are doing well and living a good life after this difficult procedure. I really appreciate the input. Take care, Vicki

RE: Seven Months Post Whipple Question?

by VickiH on Wed Sep 16, 2009 12:00 AM

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Hi Joan, I've been reading your messages for quite a while. You seem very knowledgeable about this procedure. I hope that your husband is doing well. He must be-with a caretaker like you:) Thanks for the advice. I will definitely try taking more of the enzymes to see if that helps. Take care and best of luck to you and your husband, Vicki

RE: Seven Months Post Whipple Question?

by karen1974 on Thu Sep 17, 2009 12:00 AM

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On 9/16/2009 VickiH wrote:

Thank you for sharing your experiences with me. I've only been taking one Creon 20 with meals. I will try taking more to see what helps. I was thinking of trying Charcoal capsules, but I'm a little leary about that at this point. It's nice to hear that you are doing well and living a good life after this difficult procedure. I really appreciate the input. Take care, Vicki

hi vicki my husband had the whipple surgery in jan 09 as he had a mass on his pancrese an done it as a better safe then sorry issue !! sadly it did turn out to be cancer an we was told that they think they have removed all of it an to have chemo as a precaution he started that in march an has 1 treatment a week for 3 weeks an 1 week off an he has 3 more left but 2 weeks after the op they found more growth,s but told us it could be a reaction type thing after this op or it could be more  cancer!! but will see how he goes til end of his treatment an then will scan him again for a more detailed look but he also is suffering from a stomach hernia which they have said they will worry about that if he gets thru all this first !!! but whats worring me at the moment is he been suffering with his back an every now an then it gives way on him an for the last week he has been so thirsty do you have any answers or anyone else who may read this plz he is only 36 an we have 4 kids oldest will be 16 this sunday an our youngest is 10 i am going out of my mind with worry but trying not to let him know which is hard an i find it all hard to be positive as i lost my mum to bile duct cancer 5 years ago an she was aged 53 thanks karen x

RE: Seven Months Post Whipple Question?

by nanalina on Thu Sep 17, 2009 12:00 AM

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Dear Karen, I hope your husband gets better soon . Just keep praying for him and have faith in God. The pain in his back is normal after the whipple surgery .The pancereas works harder after the whipple and thats why there is this pain.As for his stomache pain is he taking any enzymes before meals? If not maybe you should ask the doctor to prescribe some for him cuz it will minimize the pain. Also am not sure if he changed his diet or not...but he should stay away from any fatty food.

RE: Seven Months Post Whipple Question?

by VickiH on Thu Sep 17, 2009 12:00 AM

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On 9/17/2009 karen1974 wrote:

 

On 9/16/2009 VickiH wrote:

Thank you for sharing your experiences with me. I've only been taking one Creon 20 with meals. I will try taking more to see what helps. I was thinking of trying Charcoal capsules, but I'm a little leary about that at this point. It's nice to hear that you are doing well and living a good life after this difficult procedure. I really appreciate the input. Take care, Vicki

hi vicki my husband had the whipple surgery in jan 09 as he had a mass on his pancrese an done it as a better safe then sorry issue !! sadly it did turn out to be cancer an we was told that they think they have removed all of it an to have chemo as a precaution he started that in march an has 1 treatment a week for 3 weeks an 1 week off an he has 3 more left but 2 weeks after the op they found more growth,s but told us it could be a reaction type thing after this op or it could be more  cancer!! but will see how he goes til end of his treatment an then will scan him again for a more detailed look but he also is suffering from a stomach hernia which they have said they will worry about that if he gets thru all this first !!! but whats worring me at the moment is he been suffering with his back an every now an then it gives way on him an for the last week he has been so thirsty do you have any answers or anyone else who may read this plz he is only 36 an we have 4 kids oldest will be 16 this sunday an our youngest is 10 i am going out of my mind with worry but trying not to let him know which is hard an i find it all hard to be positive as i lost my mum to bile duct cancer 5 years ago an she was aged 53 thanks karen x


Hi Karen, I agree with Nanalina about having your husband checked for diabetes. I now have to take small amounts of insulin to control my blood sugar. Excessive thirst is a symptom of diabetes--as is excessive urination, fatigue, blurred vision, weight loss, among others. I also take food enzymes with each meal. My stomach discomfort is much better with these enzymes. In fact, I have doubled them in the past couple of days to try and see if it would help the excessive gas that I am plagued with--and it has seemed to help. My back hurts sometimes too. Sometimes it's worse than others, but that is getting better too. I will pray for your husband and your family. I believe in the power of prayer:) Take care Vicki
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