Questions to ask at first post-diagnosis appt

[Malice67]

Recently diagnosed with Crohns - doctor told me by phone. I am hoping to use as little medication as possible and focus heavily on lifestyle / diet now as I am not having major symptoms other than severe anemia (under control now with iron IVs and B-12 shots). First actual post-diagnosis appointment is in two weeks. Starting a food diary in the meantime and trying to come up with a list of questions so I can ask them all at the same time. Open to suggestions of things you wish you would have asked in the beginning but didn't know enough then to ask.

please and thank you!

 

[theOcean]

I know that you don't want to rely on medication, but unfortunately diet and lifestyle changes technically aren't considered "treatment", so much as they are supplemental. Being off of medication is always dangerous, and does not guarantee staying in remission long. With Crohn's you need to be really careful about this, because Crohn's left untreated can be more dangerous than the medications you would take to treat it. (If you do end up ever getting symptoms again, also always inform your GI right away so you aren't dealing with inflammation long.)

Maintenance medication you should be on really depends on the severity of your illness. You'll likely be put on 5-ASAs, which function as anti-inflammatories and just treat that. Otherwise, immunosuppressants are far more likely to keep you in remission since they actually should prevent flare-ups in the first place. They slow your immune system so that Crohn's doesn't have a chance to really create inflammation in the first place. (They're also much cheaper than 5-ASAs, which is nice.)

So I guess what you should ask is what treatment they want to put you on. It would be one of the two depending on severity. There's also biologics, but that's usually for more severe cases.

 

[shamrock15]

Keep in mind that iron/B12 don't control your disease. This means that at a very minimum, you have inflammation that is preventing absorption of these vital nutrients - very common when crohn's is active in your terminal ileum. The fact that you are getting iron as well may indicate that you are actively bleeding. For me, the anemia lasted at least 3 years and I ended up being transfused with 60+ units of blood in that time. The only thing that has worked for me was a combination of remicade and imuran.

I admire and respect your desire to try medication free. Please don't let that blind you to what is actually happening. Scar tissue is forever, or at least until you get surgery to remove it. There are good meds to prevent the scarring and permanent damage from happening. If you do try without meds, make sure you are keeping in very good and regular contact with your medical team so that if the disease becomes more active, you can catch it early.

 

[DustyKat]

I have lifted these questions from the forum wiki and are a good basis:

• What is my diagnosis?
• Where is the disease active?
• What form does the disease take (inflammation, ulcers, fistulas)
• How severe would you say my disease was?
• What symptoms do I need to report immediately to you, which can wait until my scheduled appointment, and which signify an emergency?
• What treatment options are open to me?
• What does (treatment) do? What side effects should I be aware of?
• How long before I should see an improvement?
• Do I need to take any nutritional supplements such as b12 or iron?

Good luck! I hope all goes well.

Dusty. xxx

 

[Malice67]

snip -- Otherwise, immunosuppressants are far more likely to keep you in remission since they actually should prevent flare-ups in the first place. They slow your immune system so that Crohn's doesn't have a chance to really create inflammation in the first place. ...

Is this why so many posts on traveling talk about wiping all the surfaces down as soon as you get to your seat? I was wondering about that...

 

[theOcean]

Is this why so many posts on traveling talk about wiping all the surfaces down as soon as you get to your seat? I was wondering about that...

Maybe? I don't usually go that far because, well, I don't really want my hands touching that in the first place. I was a germaphobe already pre-diagnosis, and that seems to have served me well.

 

[Malice67]

Keep in mind that iron/B12 don't control your disease. This means that at a very minimum, you have inflammation that is preventing absorption of these vital nutrients - very common when crohn's is active in your terminal ileum. The fact that you are getting iron as well may indicate that you are actively bleeding. For me, the anemia lasted at least 3 years and I ended up being transfused with 60+ units of blood in that time. The only thing that has worked for me was a combination of remicade and imuran.

I admire and respect your desire to try medication free. Please don't let that blind you to what is actually happening. Scar tissue is forever, or at least until you get surgery to remove it. There are good meds to prevent the scarring and permanent damage from happening. If you do try without meds, make sure you are keeping in very good and regular contact with your medical team so that if the disease becomes more active, you can catch it early.

I was thinking I "barely" have Crohns as I don't have any of the digestive craziness I have read all about. The ONLY symptom that took me to the doctor was extreme anemia (hemoglobin 4.6 g/ dL or 46 g/ L if those are the units you use). After three months of testing to rule out everything else they found inflammation of the illieum during the upper GI/colonoscopy so followed it with a PillCam that found more issues (to be explained more clearly at appointment) in the small intestine.

But now I am thinking that having "a little bit of Crohns" is kind of like being "a little bit pregnant" --- it is a yes / no thing in terms of maintenance treatments.

 

[theOcean]

I was thinking I "barely" have Crohns as I don't have any of the digestive craziness I have read all about. The ONLY symptom that took me to the doctor was extreme anemia (hemoglobin 4.6 g/ dL or 46 g/ L if those are the units you use). After three months of testing to rule out everything else they found inflammation of the illieum during the upper GI/colonoscopy so followed it with a PillCam that found more issues (to be explained more clearly at appointment) in the small intestine.

But now I am thinking that having "a little bit of Crohns" is kind of like being "a little bit pregnant" --- it is a yes / no thing in terms of maintenance treatments.

Crohn's manifests for some people as asymptomatic, which can actually be even more dangerous at times because the inflammation is harder to visibly detect. It still causes damage all the same, though.