Im desperate for answers

[coll21]

i have crohns affecting the duodenal and the ileum, mostly the duodenum. all the endoscopy's i have had they couldn't even scope because the swelling and inflammation was so bad. i am on remicade for the problem but i am going through the worst flare i have ever had and i don't know what to do! i had to go to the hospital because the pain i usually get in the center toward the right underneath my chest got so bad i could barely move, any time i get this i am extremely nauseated but hardly ever throw up. i have had ultra sounds and scans to check my gallbladder since all my symptoms mimic a gallbladder attack but everything has come back normal. my doctors are at a lost and the surgery that they want to try is wayyyyy too scary. is anyone else having these problems. i cant be the only one.
btw i have been on prednisone for 3 weeks, highest dose ever and i hate it! no sleep, more pimples then i have ever had in my life and my face is soooos puffy!

 

[David]

Hi Coll and welcome. I'm so sorry you're having so much trouble

What specific kind of surgery do they want to do, do you know?

What medications have you tried besides Remicade?

Have you tried any diets or made any specific dietary exclusions?

Have you ever tried enteral nutrition?

With answers to those questions, we might be able to point you in some new directions to discuss with your doctors.

We're here for you.

 

[coll21]

the surgery they were talking about is called whipple, it would be removing my pancreas and the duodenal part that is inflamed. this surgery is extremely and is rarely used for crohns but the doctors haven't given me much of any other choice... as far as diets go i have to keep to a mainly liquid or soft foods diet since that area has that obstruction i can barely get anything down. if i try to gulp a drink to take my many pills i feel like im choking. right now i am out of work because the pain is everyday. i have been managing my crohns pretty well up until now, i dont know what changed. my flare has been since june 2nd, i was hospitalized twice since and still have no signs of remission

 

[paccio6]

Hi Coll. I'm so sorry to read about your problems. You need to look at your diet very seriously. There is a good chance that something in your diet is causing your immune system to attack your intestines. Have you had allergy testing? Do you have very serious diet limitations when you're experiencing a flare up? when my daughter (9 years-old, diagnosed serious crohn's disease) has a cold or any kind of flare-up, we put her on a hypo-allergenic diet that our Naturopathic Doctor has in his book [The Family Guide to Naturopathic Medicine] by Dr. Jon Dunn at DrJonDunn.com

This doctor saved my daughter (6 years-old at the time) from being put on Remicade and possible surgery to remove part of her colon. Instead, Dr. Dunn had her off predisone and all medication within 9 weeks and since she has no medication for over 2.5 years. Check out his website, he's not just an incredible doctor but he's a very caring human being and I hope he can help you even from a distance. Take care and I hope the best for you to recover without those horrible medications like Predisone and Remicade.

All my best. Paccio6