Just diagnosed, a few questions

[agitated and old]

Hello everyone,

I am a 48 year old male and have just been diagnosed with Crohn's so it's a little overwhelming to be honest; I have some questions.

1) My hospital told me that, if I take adalimumab (humira), there is a 90% chance I will never need surgery but I have seen posts where people list the meds they are on at the bottom of their post and I have seen people on Humira who have also had surgery. Is my hospital lying to me to make me less worried?

2) Life Insurance. Are there specialist companies who will still offer life insurance? Sorry I know it's a really mundane question.

3) Obvious question, alcohol. I stopped drinking seven months ago and imposed a very restricted diet to try and stop the abdominal pain (has mostly worked). I miss alcohol terribly, is it just 'trial and error'?

Thank you in advance for answering any of the above questions.

 

[ronroush7]

Different people respond differently. You could go years on Humira and do fine or it could last for a short amount of time. Humira is my most recent biologic. I had surgeries before Humira. I have Humira Complete and I only pay 5 dollars every time I order it.

 

[Melanie1]

Hi
Where to start,- how long have you been suffering with crohns, I know your are newly diagnosed but how long have you been suffering.
Have you had any other medication or do they want to start you straight on humira?
Just my opinion but I think it's wrong for them to say there's a 90% you won't ever need surgery as we all respond to treatment differently ,I don't think they are lying I think that they have assessed you, and feel humira is the better one for you? lessening the chance of surgery maybe??
Humira is a fantastic drug and for me it worked great for two years I have heard other people go for years and years on it, so hopefully this could be you ,from what you are saying its early days for you and there are my treatments available ask you Dr about all you options.
Life insurance shouldn't be a problem you just have to tell them of your condition.
Alcohol im not a big drinker, but i was once told instead of larger switch to beer as its made with less chemicals. it is definitely a case of trial and error, I prob would stay away from it whilst in a flare.

 

[Lizzie]

I thought I'd read that biologics reduce the chance of surgery to about 40 per cent (rather than 70 or 80 per cent) for Crohns patients within ten years of diagnosis but I can't actually find the research to back that up.

I don't know whether insurance companies would refuse or charge more for life cover, but Crohns isn't supposed to affect lifespan - my dad had dreadful ill health and many hospital admissions but still made 84, for example.

As for alcohol, I wouldn't dare drink except on very rare occasions, weddings and funerals basically. I did have a couple of glasses of wine recently and it gave me a bit of abdominal pain, so I think that's a warning sign.

I've been offered biologics and said no, I'm scared of the side-effects, some of which are lethal in themselves but I know some people say they're wonderful and have given them their lives back, so it's a hard decision to make either way.

 

[Julia S]

Everyone's odds for needing surgery or having a complicated disease are different. I´m newly diagnosed myself and have spent quite some time trying to learn more about predictive factors for a complicated disease. I don´t know your specifics, but I can say that diagnosis at or after 40 is a predictive factor for an uncomplicated disease. So that's a good thing for you! Factors that I have found in literature that are predictive of poor prognosis are:

Diagnosis under the age of 40
Perianal involvement at time of diagnosis
Smoking
Extensive ileal disease
Strictures at time of diagnosis
Some genetic mutations (mutations of the NOD2 gene/positive ASCA antibodies)
Need for steroids to treat first flare at diagnosis

These are just a few things I have read in articles. All articles agree, however, that while these factors seem to correlate with a more complicated disease course, none of them are individually highly predictive of a poor prognosis. In short, its a lot of guess work.

 

[mom5272]

Keeping your disease under control is key to avoiding surgery. Not sure about life insurance but I do believe it can affect eligibility. I don't drink alcohol because it bothers me.

I've been on 6MP for 18 years, no surgery for me and little complications outside of occasional flare. I might be switching to Humira soon. I too worry about side effects but would rather have a good quality of life then be sick all of the time. So far so good for me! Best of luck to you.