Getting pain from smelling food

Pancreatitis
#21

Dr. Freeman is a pancreas specialist who deals mostly with endoscopic treatments. Dr. Sutherland is consider the foremost surgeon for the islet cell transplant which is a procedure that is done for people who have CP with extensive damage to the pancreas. Sutherland has trained over 90% of the surgeons in the world who have done the procedure.

I am hesitant to call any place the “best” place to go because it implies that is the “only” place people should go and I don’t believe that is true. It is the place that I have experience with, Dr. Freeman fixed me up about a month ago. Their website is minnesotaplc.com

I know that before my GI decided that Minnesota was the place to go, he mentioned that there is also a good center in Indiana, I don’t know which one specifically - but I would guess it is affiliated with a medical school. In my past looks around the internet, I have seen that Johns Hopkins and the Mayo also have sections about pancreatic diseases.

Also, I know Keke/Keri mentioned that her doctor was thinking about doing an ERCP with manometry. That is what Dr. Freeman did for me, which FINALLY gave answers to WHY I had problems and allowed him to fix a few of my design flaws while he was in there. From my conversations with Dr. Freeman, it sounded like not many GI doctor do the manometry part of the procedure so that could be an indication of advanced training/learning on a doctors part for learning about the pancreatic/biliary system. So, for Keri - if you doctor can do the ERCP with manometry then it may be worth it. There is always the risk of an attack, but I was in the high risk category and didn’t have an attack from the ERCP. I was in pain after, for about a week but that is because they made some cuts to the ducts to improve the situation.

What is manometry? Manometry measures the pressure of the ducts. Here is the picture that my doctor said was correct - imagine pouring something into a funnel, and you are pouring it faster than it can come out; that is what is happening when the pressure is too high in your ducts, and that is what manometry is able to tell the doctors. It is just a name for taking a measure, it isn’t anymore invasive than an ERCP but provides diagnostics that the doctors are not able to get any other way. My “anatomy” is completely normal on any MRI, CT, X-Ray. But, my pressure measure was 7 times the amount it should have been.

I know that I talk about Dr. Freeman a lot, because he is my hero and changed my life. But, I am sure that he isn’t the only doctor out there that is good. I do like the “approach” that they have at the Minnesota Pancreas & Liver Center - and that is a smaller multi-disciplinary approach to specific pancreatic issues. You can read more about it at their website. Most of the larger medical centers have website, that is a great resource to find out more about their specialties.

Amanda

#22

Jackie

thanks for your thoughts. You are fortunate you can still work. Tell me, does fiber and foods with fiber give you problems. I really need to eat foods with fiber for my heart but right now it seems to cause issues. I’ve read that you should get 9 servings of fruits and veges to help protect the pancreas, for that matter everything else too. But it seems I can only eat white bread and such. Just wondering if anyone else has this issue and can give insight on how to help it? Also, where is Dr. Sutherland & Freeman? It is great you have found encouragement and support from this sight. It is helping me too.

Thanks for your thoughts and care.
Snow Flake

#23

I agree this sucks when food is the enemy and is seen as the cause of the pain I try to put it past me grin and bear it try to be well and have a good week mike

#24

Amanda,

Thanks for ll the information. I learned a lot! I think I am going to consult with Dr. Freeman when time allows. I live in Florida and feel I need to go further medically.
Have in free day!

Hugs,

#25

Thanks for your reply and info

Snow Flake

#26

Snow Flake,

Firstly, I love your name. It’s so gentle…

I too find that bread, crackers, soup sit the best . I have the low cal Jello puddings but the dairy usually gives me a lot of gass. Mashed potatoes are also good. I find raw veggies…most veggies at that are very hard on me. Fruits are okay once in awhile bit most of the time it’s difficult. I eat Edy’s real fruit pops with no sugar. Such nourishment! Ugh!

Unfortunately do to all the carbs, I have gained quite a bit of weight. The doctor wanted to put me on enzymes but I wanted to wait until I absolutely needed them…I’m almost there,Chickadee. I believe Freeman and Sutherland are at the U of Minn.- Check with Amanda on our site- she goes to Freeman. She wrote me via the website. So, it should be there.

We’re all in this together unfortunately…but fortunately we do have each other.

Love to you,'Jackie

#27

Hi Jackie,

You are always so upbeat and encouraging. It is good we all have others who understand. Thanks for replying. I am interested in why you didn’t want the enzymes yet? They are the one thing that has helped me the most, not 100 percent, but they have helped get some things back to normal. The reason I’m asking is I’m wondering is there something about them that isn’t good for you? The ones I was put on, (Ultrase MT 20) are expensive since they don’t come in generic, just wondering? I haven’t tried the fruit pops yet, I’ll give them a try.

Hope you have a great day, Snow Flake

#28

In response to the fiber issues/fruit and veggies.

I use products from Purity Products called Super Reds and (something) Greens. It is a powder that I mix with juice, milk or water. It gives you all kinds of fruit and veggies, red and green. I find that it gives me energy and helps with constipation problems that I have. You can go to the website purityproducts.com and find information there. You can read the labels to see what is in each one. If you are a first time buyer and call them you may be able to get a free sample. That is what I did. I take these once a day. You can put it in your soup or in a smoothie also.

In response to digestive enzymes.

I went to a new doctor last week. Dr. Raj Shah in Denver, University Medical Center. I was having a terrible time with gas. It was embarrasing!!! He told me that there is no scientific evidence that digestive enzymes help. He suggested that I go off for two weeks and see what happens. Well, the gas has abated by quite a bit. This is the second time I’ve heard this about enzymes. But as we all know each one of us is different and what works for one may not work for the other.

I hope this finds you all feeling a little better today.

Keep the Faith and God Bless.

#29

Thank you for giving the info about the fiber and enzymes. I will go to that website, thanks

Snow Flake

#30

purityproducts.com

Vonnie

#31

SnowFlake,

I guess I am always hesitant to put more drugs into my system as I had ending up having a bunch of mini0strokes from a medication many years ago (that has nothing to do with pancreatitis at all). I figured the less stuff in your system the better. Of course, I am now at the point where the only things that I can digest are carbs and have gained a great deal of weight. I am ready for the enzymes and my “hero days” of being without them are officially over. I do need them. So, I will take them and hope I do not get any gassier than I am now. I am always gassy! Probably because I can’t digest! Ugh! I am sure you can relate when I say I feel like “Rosanna Rosana Dana” from the old Saturday Night Live show “If it’s not one thing it’s another!”

Anyway, I am going to look into the website that was suggested and try powdered veggies. I do miss salads…had one the other day as I was desperate for one…Yep, I paid the price. Won’t give in so easily again!

Hoping you are doing okay.'Sending a hug to you!
Jackie

#32

There was a website someone posted for powdered fruits and veggies- I dleted it by mistake. It’s purity something…
Can someone help?
Thanks
Jackie

#33

bridgette,

this is how it is for me all the time, my dr. say the same thing, you can’t hurt that soon, not enough time to reach anything, well if they had it then they would more then understand what we are saying !!! so you are NOT alone my dear !!!

#34

OMG I thought I was the only one who had this happen. My family and Dr thought I was nuts when I told them that it happened. Also as soon as I eat I start to hurt and they say there I no way the food has time to reach my pancreas. At least I know I am not insane not.lol

I just got internet back and am glad to be back online with you guys.

Hope everyone has a wonderful and pain free day!

Hugs to all,
Bridgette

#35

Thanks so much! :slight_smile: Jackie

#36

Bridgette,

I have that sometimes as well- You’re not crazy or alone!

Hugs,
Jackie