New diagnosis

[Kamastel]

I'm not sure if this is under the right sub category but here goes...
My 63 year old Dad was just diagnosed with Crohn's disease exactly 16 years, to the day, after my diagnosis. I have many questions...

How? Why? Wtf!? But really here's some background info and then my questions..

On his colonoscopy they noted ulcerations and a stricture. He's having a CT tomorrow to work up the rest of the small intestine. Kidney and liver function is normal, iron levels and hgb are good. Vitamin levels were drawn today. He is 100% asymptomatic. This was just an incidental finding on a colonoscopy he was 13 years over due for. The NP gave him the option of starting medication. Azathioprine or possibly a biologic. Azathioprine would control inflammation but isn't as good for strictures. She also said he could try going without meds but obviously still has to follow up.

My thoughts are get the CT results. If there's significant disease he obviously needs meds. But can he just start with an oral? Or does he need a biologic since he's had a stricture? Here's where I struggle if there's really only involvement in the terminal portion of the ileum can he just stay off meds since he's not symptomatic?

And for my own selfish curiosity.. how did he make it 50 years longer than I did without getting diagnosed? I know they say there's no genetic component and it just "runs in families" but what the heck does that mean? I have a sister in her early 20s with IBS symptoms.. should she be scoped too? Is there any good literature in whether or not I could pass this on to children?

Ugh.. thanks in advance to anyone that reads this. I am just in a state of disbelief right now. How the heck did this happen?

 

[eleanor_rigby]

I'm not sure if this is under the right sub category but here goes...
My 63 year old Dad was just diagnosed with Crohn's disease exactly 16 years, to the day, after my diagnosis. I have many questions...

How? Why? Wtf!? But really here's some background info and then my questions..

On his colonoscopy they noted ulcerations and a stricture. He's having a CT tomorrow to work up the rest of the small intestine. Kidney and liver function is normal, iron levels and hgb are good. Vitamin levels were drawn today. He is 100% asymptomatic. This was just an incidental finding on a colonoscopy he was 13 years over due for. The NP gave him the option of starting medication. Azathioprine or possibly a biologic. Azathioprine would control inflammation but isn't as good for strictures. She also said he could try going without meds but obviously still has to follow up.

My thoughts are get the CT results. If there's significant disease he obviously needs meds. But can he just start with an oral? Or does he need a biologic since he's had a stricture? Here's where I struggle if there's really only involvement in the terminal portion of the ileum can he just stay off meds since he's not symptomatic?

And for my own selfish curiosity.. how did he make it 50 years longer than I did without getting diagnosed? I know they say there's no genetic component and it just "runs in families" but what the heck does that mean? I have a sister in her early 20s with IBS symptoms.. should she be scoped too? Is there any good literature in whether or not I could pass this on to children?

Ugh.. thanks in advance to anyone that reads this. I am just in a state of disbelief right now. How the heck did this happen?

They say there is a 10% chance of children inheriting IBD from a parent. I wonder if that might be higher though as so many people on the forum has a parent with IBD, myself included. A sibling is 30 times more likely to get IBD if one of their siblings has it compared to the general population. So yes your sister should be scoped. No clue how your dad was diagnosed so late in life.

 

[ronroush7]

I am sorry about your dad. I am not sure if it should be a biologic or some other medication but i think he should be started on some medication.

 

[Scipio]

Here's where I struggle if there's really only involvement in the terminal portion of the ileum can he just stay off meds since he's not symptomatic?

And for my own selfish curiosity.. how did he make it 50 years longer than I did without getting diagnosed? I know they say there's no genetic component and it just "runs in families" but what the heck does that mean? I have a sister in her early 20s with IBS symptoms.. should she be scoped too? Is there any good literature in whether or not I could pass this on to children?

Ugh.. thanks in advance to anyone that reads this. I am just in a state of disbelief right now. How the heck did this happen?

If your dad has only mild involvement of a short piece of the ileum with no complications (no stricturing, fistulas, etc.) it may be possible for him to get by with only very mild therapy, say occasional short courses of budesonide or some such thing, or maybe even nothing at all. He should follow his doctor's advice closely.

It's also known that late onset Crohn's tends to be milder and less aggressive than in younger patients, although there are certainly no guarantees of that.

As for the genetic component of Crohn's, in fact there is a genetic component to many CD cases. Meaning that certain genes can make the disease more likely to occur and others that can make it more likely to be aggressive when it does occur. But it's not strictly genetic in the same sense that ABO blood types or blue/brown eyes are. The genes just produce increased or decreased susceptibilities and severities.

And this may explain why your disease occurred earlier than your dad's. Perhaps you share the same Crohn's genes as your dad but you also picked up another gene from your mother that boosted your susceptibility to some degree. Or maybe your exposure to infections or other environmental triggers over the course of your life was greater than what your dad experienced. Or maybe some combination of factors. Who knows? The cause of CD is usually complex and not well understood.

In any case, hang in there. There are many options available to both you and your dad to help manage this disease.

 

[Kamastel]

If your dad has only mild involvement of a short piece of the ileum with no complications (no stricturing, fistulas, etc.) it may be possible for him to get by with only very mild therapy, say occasional short courses of budesonide or some such thing, or maybe even nothing at all. He should follow his doctor's advice closely.



It's also known that late onset Crohn's tends to be milder and less aggressive than in younger patients, although there are certainly no guarantees of that.



As for the genetic component of Crohn's, in fact there is a genetic component to many CD cases. Meaning that certain genes can make the disease more likely to occur and others that can make it more likely to be aggressive when it does occur. But it's not strictly genetic in the same sense that ABO blood types or blue/brown eyes are. The genes just produce increased or decreased susceptibilities and severities.



And this may explain why your disease occurred earlier than your dad's. Perhaps you share the same Crohn's genes as your dad but you also picked up another gene from your mother that boosted your susceptibility to some degree. Or maybe your exposure to infections or other environmental triggers over the course of your life was greater than what your dad experienced. Or maybe some combination of factors. Who knows? The cause of CD is usually complex and not well understood.



In any case, hang in there. There are many options available to both you and your dad to help manage this disease.

Thank you so much for your insight and the information. I was not aware of much of that. Is there any genetic testing that can be done in regards to Crohns?

 

[Scipio]

Thank you so much for your insight and the information. I was not aware of much of that. Is there any genetic testing that can be done in regards to Crohns?

Yes, there are IBD-associated genes that can be tested for. It's rather specialized testing not done at most local hospitals. They can be sent out to some IBD specialty testing labs.

Certain mutations of some genes such as ATG16L1, ECM1, NKX2-3, and STAT3 are published as being associated with increased risk of IBD. Also, one of the strongest associations for Crohn's disease severity or aggressiveness is associated with a certain mutation of the gene NOD2.