New to Crohn's
February 18, 2011 4:11 PM
My boyfriend was just diagnosed with Crohn's disease. What questions should we ask his GI doctor at his next appointment?
The doctor told him based on blood tests that his condition is consistent with small intestinal Crohn's disease. She said he would need to start a steroid treatment, anti-inflammatory drugs and he is already on proton pump inhibitors.
We know this is going to be a life-long condition, and would like to start out asking the right questions.
Thanks so much for your help.
The doctor told him based on blood tests that his condition is consistent with small intestinal Crohn's disease. She said he would need to start a steroid treatment, anti-inflammatory drugs and he is already on proton pump inhibitors.
We know this is going to be a life-long condition, and would like to start out asking the right questions.
Thanks so much for your help.
See if he can get a gluten sensitivity test; alternatively, an experiment with going gluten-free may prove helpful. Avoidance of FODMAPs may also help. Best wishes.
posted by Earl the Polliwog at 4:42 PM on February 18, 2011
posted by Earl the Polliwog at 4:42 PM on February 18, 2011
Maybe ask the doctor to speculate about whether there's anything else his condition is consistent with, what signs he should be looking for to confirm the diagnosis and whether there are any lifestyle changes (like the gluten-free experiment Earl the Polliwog suggests) that he could try to rule out alternative causes.
posted by A Thousand Baited Hooks at 4:47 PM on February 18, 2011
posted by A Thousand Baited Hooks at 4:47 PM on February 18, 2011
Be sure to ask how soon they're going to taper him off steroids. The side-effects are pretty awful and it's nice to have a date to look forward to.
ccfa.org has a ton of information. Ask what drug(s) they're going to start with and what progression they're going to follow if/when the first round doesn't work (or stops working).
If the medication he's going to take requires routine blood work, ask what they look for. For example, I get a routine check on my white count because in rare cases, over time my medication can cause my marrow to stop working. That's bad. They want to catch that (mental note - don't miss that draw).
Ask about vitamin supplements. D was suggested for me. I also need B12 injections (B12 is normally absorbed in the intestines and my medication inhibits that...)
Good luck and best wishes.
posted by plinth at 5:17 PM on February 18, 2011
ccfa.org has a ton of information. Ask what drug(s) they're going to start with and what progression they're going to follow if/when the first round doesn't work (or stops working).
If the medication he's going to take requires routine blood work, ask what they look for. For example, I get a routine check on my white count because in rare cases, over time my medication can cause my marrow to stop working. That's bad. They want to catch that (mental note - don't miss that draw).
Ask about vitamin supplements. D was suggested for me. I also need B12 injections (B12 is normally absorbed in the intestines and my medication inhibits that...)
Good luck and best wishes.
posted by plinth at 5:17 PM on February 18, 2011
Ask about the Paleo diet and perhaps the Specific Carbohydrate Diet.
Here's a blog that you may find of interest:
http://crohnscarnivore.blogspot.com/2009/08/introduction-and-explanation.html
posted by egk at 5:59 PM on February 18, 2011
Here's a blog that you may find of interest:
http://crohnscarnivore.blogspot.com/2009/08/introduction-and-explanation.html
posted by egk at 5:59 PM on February 18, 2011
Have you had a colonoscopy yet? (something to ask about even though it's small intestinal located.)
posted by gaspode at 6:20 PM on February 18, 2011
posted by gaspode at 6:20 PM on February 18, 2011
Not to be all 'rah rah lawsuit lawsuit', but if your BF has ever taken Accutane, he should be aware of the possible connection.
My BF also has crohn's, memail me if you have any specific 'what's it like to have a BF with crohn's' questions...
posted by stray at 6:45 PM on February 18, 2011
My BF also has crohn's, memail me if you have any specific 'what's it like to have a BF with crohn's' questions...
posted by stray at 6:45 PM on February 18, 2011
Crohnie here. Ask what to do when the pain gets bad or when he's sick. Ask what would indicate a need to call the doctor on call, go to the ER, see the GI, see the GP. If you get "used" to chronic pain or you're kind of a stoic person, you can end up putting up with more pain than you need to. (I remember rolling on the floor of my MBA class and insisting I was okay and didn't need help and would be fine in a few days, surely.)
posted by acoutu at 7:42 PM on February 18, 2011
posted by acoutu at 7:42 PM on February 18, 2011
Ask what to do when the pain gets bad or when he's sick
This is important. For one thing, some over the counter pain medications that he may be used to using (e.g. aspirin, ibuprofen, naproxen) are probably no longer safe because of the risk of GI irritation.
posted by jedicus at 7:57 PM on February 18, 2011
This is important. For one thing, some over the counter pain medications that he may be used to using (e.g. aspirin, ibuprofen, naproxen) are probably no longer safe because of the risk of GI irritation.
posted by jedicus at 7:57 PM on February 18, 2011
just sharing..
24 Hour Comic Challenge: Everything You Never Wanted to Know about Crohn's Disease
posted by kryptos at 9:11 PM on February 18, 2011
24 Hour Comic Challenge: Everything You Never Wanted to Know about Crohn's Disease
posted by kryptos at 9:11 PM on February 18, 2011
Great question. A couple years ago I read one of those books by doctors about how to interact best with doctors. Some of the questions the author suggested for most anything were:
What else could cause this problem/set of symptoms?
What else (other structures/anatomy) is nearby that part of my anatomy?
If this is my most likely diagnosis, what are the most important steps I can take to improve my long-term health/comfort/etc?
I googled "questions to ask doctors" just now and got some more ideas - you can check it out too.
I think one of the biggest hurdles in talking to doctors about anything is the tremendous time pressure they are constantly under. I'd try to find ways to get around that by saying something like, "I'm really grateful you're taking the extra time to answer my questions today - this is all really new to me.." or something - to signal that you really need their full attention and focus for a little while to explain this complex stuff.
Good luck to both of you.
posted by serazin at 9:44 PM on February 18, 2011
What else could cause this problem/set of symptoms?
What else (other structures/anatomy) is nearby that part of my anatomy?
If this is my most likely diagnosis, what are the most important steps I can take to improve my long-term health/comfort/etc?
I googled "questions to ask doctors" just now and got some more ideas - you can check it out too.
I think one of the biggest hurdles in talking to doctors about anything is the tremendous time pressure they are constantly under. I'd try to find ways to get around that by saying something like, "I'm really grateful you're taking the extra time to answer my questions today - this is all really new to me.." or something - to signal that you really need their full attention and focus for a little while to explain this complex stuff.
Good luck to both of you.
posted by serazin at 9:44 PM on February 18, 2011
A lot of great suggestions above -- I wish I'd asked a lot of these questions when I was first diagnosed with Crohn's (almost 15 years ago).
Find out what drugs the doctor wants to start with, and what drugs he'll move on to if those don't work. Many GIs follow a pretty specific pattern of treatments, starting with anti-inflammatories (Asacol), then steroids (Prednisone), then immunosuppressants (azathioprine), then TNF-blockers (Remicade/Humira). There are some doctors who are trying a new technique, which is to start new Crohn's patients on the "last resort" meds, the TNF-blockers, because they seem to work the best, and most people end up on them anyway. It's good to know your doctor's long-term treatment plan, not just what he wants to start out trying.
Also, find out how quickly the meds should show results, and how long he should try each medication before considering moving on to a new one. I spent way too long on steroids, hoping they'd do something, before moving on to the scarier-sounding ones. If it's not working, move on.
He should know that many of the signs and symptoms of Crohn's have nothing to do with the guts. In my last big flare, I had incredible joint pain and a hives-like rash that came and went over about 40% of my body. But there were no outward intestinal signs at all. (The colonoscopy showed a ton of inflammation, however.) Knowing what other things can happen can help keep the fear and stress at bay, if you know that they may occur. Crohn's can affect the skin, the eyes, the joints -- almost every other part of the body can have issues if you're having systemic inflammation.
I nth the dietary advice above, especially about trying gluten-free. When I started the Atkins diet for weight loss years ago, I was shocked at how much better my Crohn's was within a week. And when I finally went totally gluten-free, I improved even more. Also, checking vitamin D is a great idea -- new studies are showing that D can be a huge help in battling all of the autoimmune diseases.
He should also know that more than one person will be a total jerk about the whole thing. Some people can't understand the idea of being so tired that you can't go out, or that you need to cancel plans at the last minute. Crohn's is one of those invisible diseases where you can look perfectly fine while you feel horrible inside, and some people don't get that. I've referred people to the Spoon Theory page many times, hoping it can sort of explain things.
posted by themissy at 11:14 AM on February 19, 2011
Find out what drugs the doctor wants to start with, and what drugs he'll move on to if those don't work. Many GIs follow a pretty specific pattern of treatments, starting with anti-inflammatories (Asacol), then steroids (Prednisone), then immunosuppressants (azathioprine), then TNF-blockers (Remicade/Humira). There are some doctors who are trying a new technique, which is to start new Crohn's patients on the "last resort" meds, the TNF-blockers, because they seem to work the best, and most people end up on them anyway. It's good to know your doctor's long-term treatment plan, not just what he wants to start out trying.
Also, find out how quickly the meds should show results, and how long he should try each medication before considering moving on to a new one. I spent way too long on steroids, hoping they'd do something, before moving on to the scarier-sounding ones. If it's not working, move on.
He should know that many of the signs and symptoms of Crohn's have nothing to do with the guts. In my last big flare, I had incredible joint pain and a hives-like rash that came and went over about 40% of my body. But there were no outward intestinal signs at all. (The colonoscopy showed a ton of inflammation, however.) Knowing what other things can happen can help keep the fear and stress at bay, if you know that they may occur. Crohn's can affect the skin, the eyes, the joints -- almost every other part of the body can have issues if you're having systemic inflammation.
I nth the dietary advice above, especially about trying gluten-free. When I started the Atkins diet for weight loss years ago, I was shocked at how much better my Crohn's was within a week. And when I finally went totally gluten-free, I improved even more. Also, checking vitamin D is a great idea -- new studies are showing that D can be a huge help in battling all of the autoimmune diseases.
He should also know that more than one person will be a total jerk about the whole thing. Some people can't understand the idea of being so tired that you can't go out, or that you need to cancel plans at the last minute. Crohn's is one of those invisible diseases where you can look perfectly fine while you feel horrible inside, and some people don't get that. I've referred people to the Spoon Theory page many times, hoping it can sort of explain things.
posted by themissy at 11:14 AM on February 19, 2011
Long-time Crohnie here (40+ years, and counting) and I agree with all the answers posted here, especially themissy's last paragraph. One of the most irritating things your friend will hear is, "You don't look sick".
Not sure if the following is allowed. (If not, mods, please nuke me.) I've run a support forum for Crohn's and ulcerative colitis sufferers and their friends and families since 1994. Totally free, no ads, just a bunch of people of all ages from all over the world who've been there, done that, and used the t-shirt to clean up after an "accident". We're at IBDSucks.com. We'd love to share our experience, strength, and hope with you, and lots of jokes, too.
(If you google us, you may get an old address. We recently moved. This address is current.)
posted by qurlyjoe at 5:57 PM on February 19, 2011
Not sure if the following is allowed. (If not, mods, please nuke me.) I've run a support forum for Crohn's and ulcerative colitis sufferers and their friends and families since 1994. Totally free, no ads, just a bunch of people of all ages from all over the world who've been there, done that, and used the t-shirt to clean up after an "accident". We're at IBDSucks.com. We'd love to share our experience, strength, and hope with you, and lots of jokes, too.
(If you google us, you may get an old address. We recently moved. This address is current.)
posted by qurlyjoe at 5:57 PM on February 19, 2011
Wow, thank you so much, Hive! This is all incredibly helpful. The steroids have him feeling better, with more energy, but since he is only on them for 10 weeks, I fear this is a "high," with more lows to come. We meet with this doctor in a few weeks, and I feel much more prepared that I did a few days ago.
posted by _cakes at 1:42 PM on February 24, 2011
posted by _cakes at 1:42 PM on February 24, 2011
This thread is closed to new comments.
Another thing to find out about is whether he is at risk for a stricture or fistula. Both of those can cause serious complications, particularly the latter.
Research the biologic drugs (e.g. Humira, Remicade) and talk to the doctor about them. They may or may not be appropriate for your boyfriend's disease.
Some of the long-term treatments (e.g. azathioprine) require regular blood tests, so if such a drug is going to be prescribed, find out where the blood tests will be done.
posted by jedicus at 4:18 PM on February 18, 2011