Hello from Washington State home of the Seahawks

[Elizabeth N.]

What's wrong with Creon? Why are you so stubborn about this?

 

[brooklyngirl]

Upon looking, seems like someone berated him into "getting his diet straight" before looking into enzymes. @2legsshrt I believe this was very poor advice and I hope you'll change you mind!

 

[Elizabeth N.]

It's possible to do both things at once, adjust diet AND take Creon.

 

[aaa]

Welcome.

 

[conceit]

Welcome Glad to see you made it here, finally.
I am sure this has been said before, but have you talked to Dr. Keshishian about your situation? Just a thought. I have heard nothing but great things about him and how skilled he is with handling emergencies and complications.

I can't offer any advice here, though I do wish you the very best with everything.

 

[revisionDS]

Pat welcome I am glad you made it over. I know you are overwhelmed now and can't possibly reply to everyone, especially if you are protein malnutritioned and chronically ill for so long that can affect clarity, the thought process. Do you have someone that can help you? I will make a small list for you in order of most importance first. You need a good internist also, but you need some specialists help also.

1. First get your operative report and bring it to every appointment you go to and talk to on the phone.
2. Would suggest a phone consult with Dr Keshishian he can interpret your operative report and also see if it matches your symptoms when he is speaking with you etc and give you a path forward if you need a surgical revision and what he can do for you etc (818) 812-7222.
3. You need comprehensive labwork your internist should request this immediately, unless you already have it.
4. If you are protein malnutritioned you need to first increase absorption via Creon to help absorb what you are taking in, also other deficiencies you have, but protein malnutrition will affect many other systems. You may also need TPN for a while depending on your health status
5. Get a handle on the correct type and doseage of absorbable vit/min for DSers. when you have your labwork results.

You need somone to advocate for you while you are this ill, who do you have to help till you are more stable? Who can make sure you go to appointments, make them for you? Who can help you set your priorties? Read your emails make a list of important things to do next. Who can help you manage if needed, your Creon, TPN, vit, mins until you are better to be able to take over yourself? Family? Friends? I know here you will get answers, but you need help outside of virtual help. I hope you find some relief soon.

 

[bearmom]

Hello fellow Washingtonian (although I left spokane for the rainier pastures west of the mountains years ago) !

I have to agree with the other posts that Creon is a good thing for you, and not something to be wary of. There's no benefit to taking a "wait and see" attitude with it. It's not dangerous or particularly expensive. It's not like many other medications that can be taxing on the liver or kidneys, but will just help you get more nutrition out of whatever you do eat.

I think Mrs Pat should join you here too, because while her issues may not be as urgent as yours, there is so much good advice and informed people here, I'm certain you can both get help here. I've been on many different boards over the years, and you found your way to one of the best.

Keep reading, and keep posting here. I'm certain we can help.

Just going to add something because I'm on numerous boards and see on a different one it appears you had some harsh treatment, and some advice I'd skip. For starters, you need help now, and possibly more help than you even realize. Take the creon, and I personally would jump on TPN, if only to help brings things into balance rapidly. THEN you can work on maintaining with diet and supplements,, but it's almost impossible to correct deficiencies with diet, especially multiple deficiencies.

 

[DSRIGGS]

My apologies as I have not been here for a while as I have a lot of personal family issues going on.

Regarding CREON there are others who would lead you to believe that if you take CREON that it immediately does some irreparable harm to one's DS, and that is is some sort of failure. I would suggest that those people suggesting such poppycock need to be banned from ever posting on a DS site again as that is horrible medical advice. Taking CREON happens for one reason and one reason only...your body isn't properly absorbing nutrients (believe it or not than can be an imbalance of too much fat and not enough carbs) and your body NEEDS the CREON to get your nutrient levels back to where they need to be.

I am a recent and prime example. I had my DS 9/23/13 and by last summer/early fall I was down to 173...lost 188 pounds.. I ended up needing an emergency surgical hernia repair to alleviate a blockage. I had noticed my albumin and total protein were well below range and over the next month I ended up at the ER twice and in the hospital for 6 or 7 days because my heart rate was dropping to 35 but hovering in low 40's and my BP was very low. They did full cardio work up and found it to be clear. I was anemic, zinc and copper were low, Albumin was half of the lower limit, total protein similar and several other values were messed up as well. My DS Dr'S office should have had me on creon a good 4-6 months earlier and absolutely after hernia surgery where a clear downward spiral of my albumin and total protein was evident. The Nurse Practitioner didn't mention a word and just wanted me to go on iron, zinc and copper....my freaking iron panel was in perfect range.

My issues were clearly traceable to severe malnutrition and I went on creon after meeting with my GI. I take 2-3 36,000 units with meals and one with snacks (only protein snacks..if I am having a carb snack ..yes I cheat...like popcorn I don't take a creon capsule). It took maybe 4-6 weeks but all my labs are either back 8n range or very close. My albumin and total protein were above low range at my last month lab check and I am interested to see where they fall this month (yes my hematologist wanted labs every month).

The bottom line is that CREON works only when you take it with a meal and only lasts through the meal. Some suggest if eating a large meal that you take a capsule beginning and mid meal as it is only effective with the food you eat for a short period because it attaches to the amino acid and that is how absorbtion is helped. Creon is not something one takes because of any failure on your part it is a medical necessity just like insulin for type 1 diabetics or BP meds for those with hypertension.

Get on the creon now Pat. Diet modification will not fix your problems. I ate 200-275 grams of protein a day and I was weak as a wet paper sack. The CREON has helped me immensely with my health by getting my lab values in a healthy range and I have only gone from 173 to 181 over 2-3 months...and frankly some of that is because I have been eating too much sweet stuff...but I am at the point where I am comfortable enough with my health to start backing off the creon a little to see if my body will be okay without as much or eventually (hopefully) none..but I am convinced that had I not pushed and got my GI doc to start me on creon that I would be in a very serious medical state right now and in danger of death.

Am I weak or less than a man because I NEEDED CREON? Heck no! I am alive and healthy because I took control of my health and started on a very high dose of creon.

Goid luck pat and please stop listening to the diet police from the other place and get on the creon now!

 

[JackieOnLine]

wow, thanks for sharing your story!

 

[Larra]

@DSRIGGS thank you! I hope your personal story, which you have shared so generously, will make a big impression on Pat or anyone else who needs to hear this.

 

[robs477]

@DSRIGGS Hi Scott, so good to hear from you and that youre starting to do well again! Awesome news! And...Pat is a stubborn old dude for sure, BUT...he also has been given a lot of bad advice from someone at "another website", by one of your (our) not so favorite posters, so, we are all REALLY hoping that he listens to the Vets that are on here and gets better.

 

[DSRIGGS]

@DSRIGGS thank you! I hope your personal story, which you have shared so generously, will make a big impression on Pat or anyone else who needs to hear this.

Hi Larra....I hope it does as well. CREON is not this evil pill that signifies failure. It saved my life

 

[DSRIGGS]

@DSRIGGS Hi Scott, so good to hear from you and that youre starting to do well again! Awesome news! And...Pat is a stubborn old dude for sure, BUT...he also has been given a lot of bad advice from someone at "another website", by one of your (our) not so favorite posters, so, we are all REALLY hoping that he listens to the Vets that are on here and gets better.

Hi Rob. Good to hear from you and thanks.

Yeah, I saw many of the posts over there and know exactly who you are talking about. Pat has had a rough go, and yes he is stubborn but he needs help so hopefully he listens so he can save his life.

 

[DianaCox]

@2legsshrt - please come look at your thread.

 

[DianaCox]

@2legsshrt - where'd you go?