So I am Struggling Again

[DSRIGGS]

Have you tried viokase? When one drug doesn't work try another! Sorry you are still feeling rotten!!!

Thanks, but I am not familiar with that one.

 

[DSRIGGS]

damn it Scott - I hate you are feeling so poorly. Please do start the creon and try to get over the hump. Your body has been through it - haven't you had 3 surgeries in the past few months? I can't keep track of me much less you - but was thinking you had the re-do of your DS, then the 2 hernias... hell - that is lots of surgery and gut manipulation.
I wish I had some witty comment or great suggest that would be the magic bullet you need. take it easy, be gentle with yourself and try to heal

Just 2....Ventral Hernia repair 5/24 (8 x 10 inch) and double inguinal on 6/24 where he took a lipoma off a cord on the left and also a lymph node on right side.


Thanks

 

[DSRIGGS]

attention whoring again...

j/k friend.

Hopefully your body re-sets, the creon gets you over the hump, you get vitamin etc stuff in order, and it's onward and upward from there. Try not to borrow tomorrow's worry (a lesson I have yet to internalize completely and have to remind myself of daily). Positive ju-ju sent your way

Thanks Darling and all the rest of you as well. I start on this MCT oil on Monday and will see how that does and will probably do the CREON soon as well.

 

[hilary1617]

Scott,

Feel better! You know I know exactly how you feel about Creon, but it's a godsend when it is needed. Make sure to get Welchol to keep the burn to a minimum. Heal up and fatten up a bit, my friend!

 

[DSRIGGS]

Scott,

Feel better! You know I know exactly how you feel about Creon, but it's a godsend when it is needed. Make sure to get Welchol to keep the burn to a minimum. Heal up and fatten up a bit, my friend!

Thanks my sweet friend. I think I have some welchol left aa well and I am thinking a small dose of creon relative to what I was taking before should hopefully throw me over that magical threshold...so hoping not to need the creon.. my friend from Dr K's group on FB tells me there is a better and cheaper drug than the Creon so I am asking him for more information in that regard.

 

[jim1969]

I hope you feel better soon Scott! You deserve a break!

 

[hilary1617]

Thanks my sweet friend. I think I have some welchol left aa well and I am thinking a small dose of creon relative to what I was taking before should hopefully throw me over that magical threshold...so hoping not to need the creon.. my friend from Dr K's group on FB tells me there is a better and cheaper drug than the Creon so I am asking him for more information in that regard.

My oncologist's office sometimes prescribes Zenpep in lieu of Creon. The nutritionist there once mentioned to me some program where Zenpep is provided at low or no cost to Cystic Fibrosis patients.

 

[revisionDS]

OMG Scott......gee you cant get a break.....I think with all your recent surgeries you should give your body time to heal in the meantime take creon while you are healing and hopefully the revision Dr K did will hopefully work.....

 

[DSRIGGS]

My oncologist's office sometimes prescribes Zenpep in lieu of Creon. The nutritionist there once mentioned to me some program where Zenpep is provided at low or no cost to Cystic Fibrosis patients.

I have a sample pack of ZenPep that Marshall gave me back when I still saw him, but I have to look for what David was talking about because it wasn't Zenpep

Here is some of our conversation:

"Did I understand that you had creon left over from before? If so go for it. I think I shared with you that I did some research on enzymes a while back? If you are gong to go onto some MCFA's you probably should also use something with ox bile. The creon has lipase of course but that doesn't emulsify anything. That's what the bile does.......

....Another thing that I want to spread the word about is creon. It's a total rip off as far as the $$$ is concerned. I have found much better products (made in GMP facilities by very reputable co's) and far more potent with far more specific (like 10 more) enzymes for 10% the money. When you need to buy more I will shop it for you if you like."

The bold text above: If I am not mistaken I believe that is what the Welchol was for???

 

[DSRIGGS]

OMG Scott......gee you cant get a break.....I think with all your recent surgeries you should give your body time to heal in the meantime take creon while you are healing and hopefully the revision Dr K did will hopefully work.....

I am hoping so. I am going to start on Creon today.

 

[hilary1617]

I have a sample pack of ZenPep that Marshall gave me back when I still saw him, but I have to look for what David was talking about because it wasn't Zenpep

Here is some of our conversation:

"Did I understand that you had creon left over from before? If so go for it. I think I shared with you that I did some research on enzymes a while back? If you are gong to go onto some MCFA's you probably should also use something with ox bile. The creon has lipase of course but that doesn't emulsify anything. That's what the bile does.......

....Another thing that I want to spread the word about is creon. It's a total rip off as far as the $$$ is concerned. I have found much better products (made in GMP facilities by very reputable co's) and far more potent with far more specific (like 10 more) enzymes for 10% the money. When you need to buy more I will shop it for you if you like."

The bold text above: If I am not mistaken I believe that is what the Welchol was for???

Hmmm.... Welchol is a bile acid sequestrant. I only have a limited grasp of these things. My understanding is that bile's primary role is to break down fats, but that bile is also what causes that excruciating burn. Usually the lion's share of bile acids delivered to the duodenum are absorbed back into blood within the ileum and thus don't cause tailfeather pain. I don't know whether Creon to the mix causes more bile to be released, or if excreting extra enzymes also causes a burn and that Welchol also acts on enzymes.

Truly, all I really know is that Creon helped me greatly with nutrition challenges (after pancreatic surgery not related to DS), but at the cost of burning diarrhea, which was resolved by adding Welchol...

In any case, I hope this challenge is a temporary one!

 

[Annabelle]

That is really awful. I hope you feel better soon.

 

[Razbry]

Scott....keep us posted.

 

[Bagaof4]

Wow, Scott. I feel so badly for you. Each time an issue seems to be resolved you get sucker punched! Not right! Something really good must be coming your way when all is said and done. Just hope you start to feel good soon!

 

[Clematis]

You poor dear. I am sorry for the endless issues you seem to have faced. I know nuthin' about creon or the related medicines but you have to try something before you are so thin you have to run around in the shower to get wet. Hang in there.