The random newbie question session!

[Al77]

Hi all,

I'm new to the forum and Crohn's, so I have a few questions, all random and you've probably answered them a million times. I apologise in advance and hope I am posting in the right place.

I understand that CD affects people differently, but basically...

Medication

I've been given Pentasa, but I have read this is for when you're Crohn's calms down. Isn't it that you have one medication to "stop" the flare ups and then once they go, you take a different medication. I'm a little confused about this. Is this the right medication? Any help would be cool.

Diet

I have read that diet can help with CD. Can anyone tell me the names of the diets, like a little list? Then I can go and gather info. I know paleo is one.

Even if you are on the medication, is it best to follow one of the diets too?

If there is certain foods that cause you trouble, will you be ok to eat the foods if you're on medication. Or will the problem food "override" the medication? Or is it different for everyone.

I don't seem to be able to find any trigger foods. I have kept a food diary, it's all in my head :yrolleyes: any other tips about finding trigger foods?

remission

how do you know when you are in remission? You just feel better? Or does it have to be tested by a doctor?

Well, I had a big list of questions earlier and I seem to have forgotten them all. I think that will keep me going for now!

Thanks in advance.

 

[Cat-a-Tonic]

Hi, welcome to the forum! In a very large nutshell, we're all different, so what works for some may not necessarily work for you (in terms of diet, medication, etc).

As for medication - yes, often times stronger medications such as corticosteroids (Prednisone, Entocort) are used to quickly get inflammation under control. Then maintenance meds, such as Pentasa like you mentioned, are used to keep things under control. Pentasa is a pretty mild medication and it isn't likely to get you into remission by itself. Are you flaring right now? If so, I'd say ask your doctor about what other medication options you have. Depending on the severity and location of your Crohn's, they may want to try things like biologics (Remicade, Humira, Cimzia), or immunosuppressants (Imuran) as well.

I don't know a lot about the various diets you can try so I'm going to tag Kel and Hugh here as they are more knowledgeable than I am on such subjects.

If you haven't found any trigger foods, great! Some of us have a lot of trigger foods and some have few/none. Trigger foods won't necessarily have any impact on inflammation, but may cause symptoms (for example, for me I cannot have any coconut or I feel nauseous and have stomach pains for days - it doesn't actually make my illness worse, it just makes me feel awful). Certain diets may help you feel better and I do encourage you to keep up with your food journal if you do start on a specific diet.

As for how you know you're in remission - symptoms and inflammation don't necessarily correlate. You could have terrible inflammation but feel few symptoms, or you could have just a little bit of inflammation but feel horrible. So going by symptoms alone is not a reliable method of determining remission. Usually doctors will want to do scopes (colonoscopy and upper endoscopy) and blood tests (and possibly other tests as well) to determine if you're in remission. remission seems to be different for all of us, too. Some of us still have a few symptoms while in remission - this could be due to things like scar tissue in the bowel, which can't be healed by medication.

I hope that helps a bit? Feel free to ask us more questions if you can think of them! And again, welcome to the forum.

 

[Al77]

Thanks for all the information.

I don't really know what a flare up is. I have cramps, bloating, gas / wind, burp a lot (pretty much all the time) and use the bathroom a fair bit every few days (it's usually in the morning and then calms down after 4 or so hours). Maybe that's flaring. I honestly have no idea!

I think the Crohn's is not so severe, the Dr. described it as mild. IIRR it was in the small intestines.

I haven't really spoke to me doctor about Crohn's. After the tests, she rang me up and told me I had Crohn's and then prescribed the medication. I have an appointment to see a nurse about it all on Thursday.

 

[Cat-a-Tonic]

I would say, write down a list of all your questions for the nurse on Thursday. I would ask her where in the small intestines it's located, if your current symptoms are indicative of a flare, and if she feels Pentasa is enough to get you into remission or if something like corticosteroids for a short while would be more beneficial.

A flare just means you have active inflammation - like I said, symptoms don't necessarily tell the whole story. If they said it's mild then I'm presuming that means you have some mild inflammation going on, but I would ask more about the specifics. Good luck on Thursday!

 

[Al77]

Ok, thanks for your help - much appreciated!

I'll spend some time over the next few days trying to think about what I need to discuss and write it all down. I might take my girlfriend too as I get confused with information overload, have a mental meltdown and forget everything.

 

[Cat-a-Tonic]

Bringing someone with you is a good idea - if she's on board with the idea, you could even ask her to take notes while you talk with the nurse. Yes, information overload or just plain getting flustered can definitely happen when you have a lot of questions. Here's what I do - I write 3 lists for every doctor appointment. A list of all my symptoms, including severity and how often they occur and when they started. A list of all the medications & supplements I'm taking, what dosages and how often I take them. And a list of all my questions, with the most important ones at the top of the page. It sounds like a lot, but it's very helpful to me as I tend to totally go blank as soon as the doctor walks in the room. If the doctor asks, "How have you been feeling?" I can just show them the symptoms list. At the end of each appointment, my GI asks if I have any other questions, and I consult my questions list to make sure we've addressed everything. And they always ask me what meds & supps I'm taking, so it's easiest to just hand them that list.

 

[Al77]

Good ideas!

But now i am a little confused if symptoms and inflammation don't correlate, how do you sort out the symptoms. I thought that's why you took the medication and as the inflammation goes down, your symptoms go too.

how do I deal with the symptoms? Just find what triggers them? Or will I always have them?

 

[Cat-a-Tonic]

Oh, sorry if I misspoke - yes, as you get into remission your symptoms should go down and may disappear altogether. If you're not inflamed then you shouldn't have many or any symptoms - unless, like I said, if you have something like scar tissue then you may continue to have some symptoms, but if you get into remission your symptoms should at the very least ease up. Sometimes extra-intestinal symptoms (such as arthritis) stick around in remission as well. It's one of those things that varies from person to person. And I guess I should have said, that symptoms and inflammation don't necessarily correlate, but they certainly can in a lot of cases. Long story short, once you get on some good treatment and you start to go into remission, yes, your symptoms should start to ease or even disappear.

Sorry if that was confusing! I hope that helped clear things up a bit.

 

[kel]

I'm sure Hugh will have more to say but I suggest looking into paleo diet if you want to go that route. If your crohns is mild as you say you can probably control it through diet alone. Pentasa is pretty mild though so I wouldn't be worried if you need it for a while.

Everyone is different but for me a flare usually means lots of bloody diarrhea, weight loss, fever/chills, fatigue etc. Typical crohns symptoms.

Also, how were you diagnosed? Colonoscopy?