Humira questions

I was just diagnosed with what my doctor feels is Crohns. Because I have strictures in my ileum, he wants to treat me aggressively with Humira and Imuran. Needless to say, I am nervous. Can you please relieve my fears? Any other suggestions on diet ideas, do's and don't's, advice, etc. would be greatly appreciated! Thanks.

Hi and welcome.

Sorry you're dealing with strictures. Many people here deal with them. It's important to get the inflammation under control as quickly as possible before perminat damage is done. Scare tissue can't be treated with medication or diet. Surgery or dilation are the only options.

The risks associated with biologics are low. Diet is helpful but usually not enough for a lot of people. Most do diet and maitinance meds.

I've recently started Remicade and I'm seeing and feeling improvement. Blood work is looking good too.

Sending you my support.

Thanks for your story and sharing your experience, I appreciate it. I have a great GI doctor that I trust and will follow his advice, it just helps to discuss with others who are walking in my shoes!

Ds does not have a stricture but has been on humira and Mtx without and issues for over a year
It keeps things in check very well

Hi there!

I was put on humira around three years ago. I was worried about the side effects and I wasn't really keen on the idea. However after a matter of months, my inflammation marker had actually gone to 0 in the first time ever!! So I got a bit complacent and decided I was to worried about the side effects to carry on taking it, then I hit a huge flare, as big as when I was first diagnosed.....safe to say I realised that the side effects were worth taking the risk for, as I think the damage you can do to your body through active inflammation is far worse.....and at least you're living your life now! That's my opinion anyway after my experience.

Diet wise.....I found giving up black tea helped a lot, and instead I switched to green tea. I gave up milk and found I had a reduction in the size of my belly...no longer did I have the pot belly I'd had since I was three years old! I have coconut milk instead (yum). I also try to reduce my gluten and wheat but I'm not super strict with this I just find it helps a little by not eating too much of it. Then I also take spatone sachets, omega 3 fish oil, and a multivitamin. I found the multivitamin was especially helpful for keeping my levels up.

And then last of all I would say......relaxation, taking care of yourself, avoiding stress as much as possible......I know this isn't always possible but I do really believe this helps such a lot....(taking an Epsom salt bath with lavender oils I would highly recommend!)

I hope this has been a little helpful...I think it's all what personally works best for you....but I think it's good to pick up tips along the way too

Oh...I also treated myself to a little pink ice pack for before I do my humira to numb the area a little....and (I know this is not very healthy) but after each injection day I treat myself to a mcdonalds! This has actually made me look forward to my injection day. These kinds of things won't work for everybody but for me they take the edge off

Good luck with everything xxx

Daytripper, would you mind sharing which inflammation marker has been used for you and how high it had been?

I'm just curious, as I have a daughter about to start Humira.

Kimp, I think it sounds like your GI has a good plan. We are not dealing with strictures yet, but sometimes it has helped my kid to have more liquids: bone broth, soups, etc...and right now just drinking the Boost or Ensure type meal replacements works well for her. Probably those things would help you with strictures because there is no fibre. Did your GI mention any dietary restrictions?

Hi Pilgrim.
Well whenever I go to see my specialist nurse she usually just tells me what my inflammation marker is at and my iron level, so I don't know a lot of detail, but I will tell you what she told me. When I was first diagnosed my nurse told me my inflammation marker was around 102, around 5 years later I started to take humira and my marker went down to 0 (for the first time since being diagnosed) then I stopped the humira and it went to around 100 again, so I went back on it and my marker has been around 30 so I've been increasing the dose to weekly for a month and then I will go for a blood test to see if that has helped. I'm feeling better, so I'm hoping for a positive result! I hope this has been helpful? If you want to know anything else then feel free to ask I hope your daughter does really well with the humira xxx

Oh, and I will also just add, my nurse also told me a normal inflammation marker should not be above 3.....xxx

Thanks Daytripper, it sounds prob. like the CRP marker. I'm really pleased that you have had such success, and the best test is that you feel better. Let us know how it goes on your next blood draw.