Newly Diagnosed... scared

[spritematt]

My husband has been recently diagnosed with Crohn’s, although he's been struggling with fistulas for over 4 years. We recently returned from the Mayo clinic where, after reviewing MRI results, they found that only a small portion of his small intestines are effected, and he has two fistulas. He has no other symptoms of Crohn’s other then the fistulas. Because of this, he is so reluctant to start the medication, Humira, in thinking that the symptoms he could *potentially* get from the meds will be worse than he feels now. We are also on a gluten free diet. He breaks out in a rash uses the bathroom MUCH more frequently when he has gluten. These are the only things we've done thus far. Any support on starting Humira or any suggestions on what else we can do to help him? Our doctor agreed on the GF diet, but became upset when we asked about pro or pre biotic, diet options, etc. We were told no nicotine or ibuprofen. What else should he be avoiding? Anything he SHOULD be taking/eating/using? New to this! and SCARED. We have a young family, and I refuse to live a day without my husband. He's only 30. He has 50 years of life ahead of him! Not the opposite...

So glad to find this group. We've been dealing with this for a long time, but just receiving the diagnosis. The seriousness is just hitting us.

I can't thank you enough for any advice.

 

[KayleighMeek]

Hi
Sorry to hear your husband has been diagnosed with this horrible disease but this is a great forum to help get through everything it throws at you.
Apart from ibuprofen and nicotine which everyone is told to avoid the rest really does vary from person to person it is just finding what is best. Maybe starting a food diary and keeping track of anything that causes problems.
I have been on humira in the past and have to say I was fine with it made me feel a lot better. The lists of side affects of all drugs used for crohns treatment are long and scary but the occurance of many of them are rare. I would have though the dr suggested humira as your husband has fistulas and this drug is particularly good at treating them. Another drug that is very similar is infliximab which is done by an infusion. A lot of people on this forum have had sucsess with these drugs unfortunatley I haven't but I like to be awkward lol.
You wrote:
and I refuse to live a day without my husband. He's only 30. He has 50 years of life ahead of him! Not the opposite... Just wanted to say I have never heard of or been told that crohns disease will shorten my life. The worst thing people can do is leave the disease untreated this is when you can become very sick but again everyone has different severity of the disease.
I hope your husband finds something that works for him so he can get into remission.

 

[spritematt]

I certainly didn't mean it was going to shorten his life, just meaning he has a long time to deal with the disease. I really appreciate your response, and am so glad to find this forum!

 

[KayleighMeek]

I just interpreted it wrong sorry. It can be so scary when you are first diagnosed and thrown into his whole new world of medications and dr's appointments for all of your family, so it's good to come on here and have people who know exactly what we have all been through.

 

[Thermo]

My recommendation if you want him around another 50 years is to start the Humira, it is one of the only things that will give him any sort of decent life with this disease. If he has fistulating crohns disease as well its even more reason to start Humira as it can heal them, if you leave fistulas untreated for long periods of time they will get so bad that only surgery will fix them. For me it took my doctor telling me i had a rare disease and there was no other option for me to finally start Humira, i was in denial for 20 years and i lost time and i paid for it dearly, dont waste time. One thing i recommend is to actually get a copy of the double sided table cloth long drug facts on Humira (I joke but it is the longest drug facts i have ever seen) and read it, you will find the percentages of all these negative side effects. The majority of them are very low and rare, life is about percentages you stand a high risk just leaving your house everyday.