Question about Remicade/Méthotrexate

Greetings everyone. This is my first post here so I will introduce myself. My name is Karen and I have been diagnosed with a moderate IBD (probably ulcerative colitis but it might be Crohn’s disease too, Dr is uncertain) in September 2017.

Since December I have been on Remicade (with little to no change to my symptoms) and I started Méthotrexate in may (slight improvement of my symptoms so far).

I suffer from emetophobia, which is the phobia of vomiting (it’s not just that I do not like to vomit. It’s not just a fear. It paralyzes me and affects a lot of aspects of my life). It was manageable until I had to start my Rémicade treatment and learned that It would lower my immune system and that I would be more vulnerable to infections and food intoxication. Adding Méthotrexate didn’t help at all. So much that I barely eat anymore. I made the mistake to read on the internet the indications to follow for those with a compromised immune system and I am now scared of pretty much every type of food. Needless to say I have been avoiding restaurants as well. Am not more comforted or reassured if I am the one cooking. I live on Ensure, toasts and sometimes pasta.

While I am seeking help to deal with this phobia, I was wondering - those on Rémicade or on Rémicade/Méthotrexate, how much did you change your eating habbits? Beside the foods that you are unable to eat due to IBD, have you been avoiding anything else (like mayonnaise because of the raw eggs, etc)? Do you keep going to restaurants? Have you noticed a difference, are you catching food intoxication more often then usual/people around you?

If you have any tip to offer that would help with my current issues, I would love to hear them.

Hi Karen,

Welcome to HW. You've come to a great place for answers and support. I can only give you an opinion. I think you need to treat your phobia. You need to see a Psychologist. I'm very sure that this would help you get your fears under control.

With Remicade, or any immuno, you have to remember that these drugs tamp down an over active immune system. It doesn't mean you're left without an immune system. You could be slightly more susceptible to colds and such, but if you take precautions, like regular hand washing, keep hand sanitizer with you, and be wary of people around you that are sick, you should be able to be totally fine.

I would say that it's a much bigger concern that you could become sick from being malnourished. Ensure is a supplement, and should only be relied on as a meal replacement when you aren't well. You can't just live on Ensure.

Hopefully some couselling will really help you with your phobia, and you might even see a dietician to reintroduce foods and meal plan. Nothing wrong with avoiding restaurants or even eating out all together, but you really need to eat properly at home.

Hope this helps. I'm sure others here will have some ideas for you as well. Keep us posted.