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Just diagnosed with Crohn's


Wed, May 15, 2019 6:52 PM

I just got diagnosed with Crohn's last month, and I have a few questions.  I'm a male, age 39, and have had abdominal pain and rectal bleeding for about six months.  My job is very stressful, and I don't get much sleep.  I first went to the doctor due to an anal fissure that wouldn't heal and was very painful.  Various medications and treatments didn't help, so I ended up having a colonoscopy last month and got a Crohn's diagnosis.  

I met with both the colorectal surgeon and gastroenterologist this week, and they seem to have conflicting views on treatment options.  The surgeon says to try a more conservative approach with a diet change, including eliminating gluten, dairy, red meat, sugar, and processed foods.  

The gastroenterologist said that certain foods can aggravate inflammation, but they aren't the cause, and diet change won't solve the problem.  She prescribed prednisone, which I just started taking, and recommended I start Remicade asap.

So my question is, have you had improvement with symptoms with diet change alone?  Did you experience any side effects with Remicade?  Thanks for your help, this is all somewhat overwhelming.

FPO Anthropod29
Joined May 15, 2019

Thu, May 16, 2019 3:07 PM

Reply posted for Anthropod29.

It's a whole new world and life to go with it.
I would say take it slow, but your body probably won't like that.

Definitely give yourself space, as well as those you share life with (family, friends, and co-workers). Don't feel the need to be perfect. Do you.

I would also say remember that changing your diet is not going to cure this. At most, it can help. For some, diet changes do little or even nothing at all.

Listen to your body and your medical team. Follow other IBDers on social media (if you use it - you can find vocal advocates on all the platforms). Reach out whenever you need to.

FPO djwemlcc
Joined May 14, 2019

Thu, May 16, 2019 2:31 PM

Reply posted for djwemlcc.

Thank you for taking the time to reply, it was very helpful!  I'm attempting to change my diet by eliminating things that I know cause problems for me, like dairy.  It's a big lifestyle change.

FPO Anthropod29
Joined May 15, 2019

Thu, May 16, 2019 2:16 PM

Reply posted for Anthropod29.

I was 37 when I was diagnosed. And, yes, I agree that the information is overwhelming.

My own doctor was pretty noncommittal on anything diet, other than limiting coffee and chocolate. I read a lot of stuff on the Internet - most of it conflicting with each other.

I did a course of budesonide, which put me in remission. I tried azathioprine for maintenance, but had a severe reaction to it. We wound up waiting before stepping up to any other treatments, and I have thus far not had to seek any further medications.

But...
I attribute that to diet change. I read Sandra Ballantyne's The Paleo Approach, which is more information overload. It advocates an elimination diet based on paleo diet principles. She calls it the Authoimmune Protocol, and it is everywhere on the Internet as "AIP".  I struggled a lot, because it relies heavily on vegetables, especially the leafy kind, which in raw form do not do well with IBD at all. But I persevered with it. I actually felt better on that diet than I have at any other time of my life.
On an elimination diet, the idea is that you cut out anything that can be a trigger food/allergen and then slowly reintroduce things one at a time to learn how your body tolerates them. With time, I identified things I needed to leave out of my diet. But now I eat pretty widely.

One of the items I cut is gluten. Cut gluten and salads out of a died, and that eliminates any fast food restaurant anywhere. And I have to be choosy about other restaurants. That's been a huge lifestyle shift for me and my family to accommodate. It has been exceedingly difficult, but the rewards have been no medical treatments for Crohn's since the initial steroids.

The thing to know about diet is that our bodies are unique. So what triggers my inflammation may or may not trigger yours, and vice versa. That's the beauty of an elimination diet. You figure out you.

I would, however, STRONGLY recommend that you work with a registered dietitian and your GI as you work through what your diet should look like.  Elimination diets (there are many varieties) can have a significant impact on your nutrient intake. An RD can help make sure you still get what your body needs as you sort things out.

Personally, this is what I have cut:

  • Gluten (anything from wheat)
  • Coffee
  • Chocolate (not entirely, but greatly limited)
  • Most dairy (cheese seems to be okay in moderation; a bowl of cereal every now and then)
  • Nuts & legumes (except peanut butter)
  • Whole corn (but processed corn - corn tortillas, corn-based chips, grits are ok)
  • Most things from the "nightshade" family (peppers, tomatoes, white potatoes, etc. - I eat ketchup, and that's about it) - these tend to cause me really severe reflux
Your mileage will definitely vary. This would not necessarily be your list, just what works in my particular case.

Good luck!

FPO djwemlcc
Joined May 14, 2019

Thu, May 16, 2019 9:49 AM

Reply posted for Anthropod29.

I’ve not done diet modification. Remicade did not have any side effects for me, but it didn’t seem to help either. Prednisone was the only thing that worked for my ulcerative colitis but the side effects are awful. Currently on Entyvio for Crohns.

FPO charbs
Joined Oct 31, 2016

Thu, May 16, 2019 9:49 AM

Reply posted for Anthropod29.

I’ve not done diet modification. Remicade did not have any side effects for me, but it didn’t seem to help either. Prednisone was the only thing that worked for my ulcerative colitis but the side effects are awful. Currently on Entyvio for Crohns.

FPO charbs
Joined Oct 31, 2016

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