New with Questions

[daniellemn]

Hi all,

This is long...just read the bold questions if you want to help but not read everything!

So I've been diagnosed with GERD since 2003. This past May I started experiencing so major joint pain in all my joints. Five months of test after test landed me in a GI clinic with a positive IBD serology for Crohn's. Colonoscopy showed ulcers throughout the colon and increasing in number near the terminal ileum. MRI showed that the disease was limited to the end of the small bowel (though "a significant length was affected"). Looking at my own MRI I can see that the length starts on one side of my abdomen and loops around at least once. Treating the Crohn's made my joint pain disappear (yay!).

GI doc started me on budesonide and azathioprine. The budesonide will taper over 10 weeks, but she says I'll be on the azathioprine for life. When I asked her for diet recommendations she said "you don't need to change anything about your diet." Pretty sure I don't agree with her.

I've done a lot of reading about diet and Crohn's since. Seems like everything I like to eat is probably a food that can trigger flair-ups. Salads, spicy food, nuts, chili, etc. I already avoid dairy, so changing that isn't an issue.

Any tips for changing my diet in a way that doesn't make it feel like I'm missing all my favorite foods? I've been hesitant to change anything yet because the idea of a complete diet overhaul is daunting.

Also, can anyone give me success stories for controlling Crohn's through diet alone with being able to stop meds? I do not want to be on immuno-suppressants for life.

On a different note, I work as a nurse in a hospital. Anyone else on immuno-suppressants who work with acutely ill people who can give me a pep-talk that I won't catch everything I'm exposed to?

Lastly, Any tips for working shift work with Crohn's?

TIA!

Danielle

 

[DJW]

Hi Danielle. Welcome to the forum. I'm afraid I don't have any good answers for you. I wanted to send you my support and best wishes.

 

[HannahR]

Well I do know a diet that becomes less restrictive over time that I am on right now.
But to start on it is pretty daunting because its objective to to heal the root cause and then figure out any food allergies

It is by Jini Patel Thompson and alot of people kind of ignore me when I really say how good this diet is but I hope one day they will figure it out.

I have managed to get off of all my medication except for Pentasa. I have gone through flares when going off of medications during this diet but I have successfully healed myself from a flare and really gained root level healing.
I am going on to dose off of Pentasa soon!

All I can say is, is that it is the best feeling in the world to know you don't have to rely on medication anymore.

I wish I could tell you about a diet that was not even restrictive in the slightest but to really heal ourself we need to make some sacrifices and in the end it is really worth it!

I am living proof and I am adding new foods back everyweek!!

I hope you find this helpful!

 

[nogutsnoglory]

As for avoiding getting sick I think you likely know this stuff as a nurse. Wash your hands with soap and water vigorously for 30 sec, try to avoid touching your mouth and eyes and use hand sanitizer when a sink is not an option. If a patient is sick you can wear a face mask.

I think diet is a good augment but if your disease is significant you will likely need maintenance therapy. I find I get sick on the immunomodulators like 6mp often but handled biologics much better. Good luck.

 

[PsychoJane]

Hi Danielle,
Welcome and sorry that you had to join this boat. Thankfully, that forum allows us to not feel like we are the only one in the world!
Regarding your questions, I unfortunately don't have a black or white answer to share.

Any tips for changing my diet in a way that doesn't make it feel like I'm missing all my favorite foods? I've been hesitant to change anything yet because the idea of a complete diet overhaul is daunting.

From my experience, it is more important to cut gluten, dairy and excessive sugar than anything else. Everyone will be different on that aspect, I eat lots of veggies, spicy food and these assumed "no, no" without a problem while I am not flaring. It is really different from one another and unfortunately can only be learned by trying the food. During flare I would obviously not push it but I can tell you I have seen people with IBS struggling way more than I do with what they could it. If something does not make you feel ill, keep eating it but I still think you want to make a few changes in order to "prevent" and paleo and scd type of food habit are what seems to be the best for us. I also believe low-meat is in our best interest. Anyway, these are my thoughts on the subject but I do indulge myself with "unhealthy" stuff here and there. The idea is not to put you in a overly strict context, make it a choice, not an obligation!

Also, can anyone give me success stories for controlling Crohn's through diet alone with being able to stop meds? I do not want to be on immuno-suppressants for life.

I hear you on that matter. It is a tricky subject... I am med-free and it is partly by choice that I am. My disease is severe but behave during years. It unfortunately requires surgery to reach these long-lasting remission so far though (keep in mind that medication did not prove themselves efficient and were pushed in first place). So far(I've had it for almost 15 yrs) I have felt sicker on maintenance med than without them. This is also very different from one another.

Regarding the job... I'm afraid I would not know. I was concerned myself (I considered training to be a RN at some point) about these questions surrounding that profession. I know we have a few crohnies nurses around though, I hope someone will jump in and bring you a clear insight on that matter.

 

[wild_one353]

hi danielle!!

I also have been fearful of taking the medications.

I've used only diet to control my symptoms for 4.5 years, and ive never been back to the doctor for any complications like bowel obstructions, absecess, fistula's, etc. I've always had 1-2 bowel movement's a day except for perhaps the first 6 weeks of my worst symptoms appearing which was when i was first diagnosed. so in some ways i do feel lucky, but diet still isnt enough to really beat all the symptoms and still at times i think about going on meds as i still have inflammation i can feel in my abdomen, i know my disease isnt fully controlled. i would probably do really well with meds actually in combination with my diet, which is what i hope you will do.

i attribute most of my success with a modified version of the specific carbohydrate diet. you can learn more by purchasing the book called breaking the vicious cycle. my version of the diet still adheres to elimination of lactose and sucrose, but i avoid alot of foods that are on the SCD safe list, because they still have lots of sucrose in them, so i eat very little fruit, and the fruit i eat is low in sucrose and total sugar, so i eat like cranberries rasbperrys in low amounts. also, i do eat complex carbs which is what they recommend avoiding, so i eat wheat, oats and well cooked beans but corn and rice is hard to digest still. I do not make anything out of nut flours as the diet suggests, nor do i make homemade yogurt like the diet suggests. so the biggest piece of advice from the SCD diet is lactose and sucrose make diarrhea much worse, and reducing these in your diet will reduces diarrhea symptoms.

I developed crohn's shortly after a course of antibiotics, and now new research has found evidence that antibiotics permanantly destroy good bacteria in our intestine in some people. Also, people with IBD have less good bacteria in their intestines then healthy people and this is why a new treatment which restores the missing bacteria seems to cure the disease as found by a gastroenterologist Doctor Borody PH.d MD, but will not be available for 2-3 years. here is more info on the new treatment that may cure IBD- http://www.crohnsforum.com/showthread.php?t=52400

 

[carrollco]

Hi! I use diet as a way to control symptoms. No lactose, no sugar, no gluten. My Crohn's is considered severe but I am trying the natural route right now. I was on Humira for 2 years and it worked great, but had started to lose effectiveness. I did some soul searching and decided I would not be true to myself if I didn't try a homeopathic approach before Cimzia or Remicade. That said, I am not doing well. The amount of bloid is increasing as are my pain levels. I have an appt w/a homeopath on the 17th--took me 4 months to get in to see her. I approached this as one would a scientific experiment both emotionally and physically. The sacrifice of certain foods like flour and sugar is more difficult than I thought and dang if I don't miss my sourdough bread. *grin* The way I feel now is not a long term solution, so I will wait to see the homeopath before calling my GI.

Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.

 

[carrollco]

That would be blood...

Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.