Hello everyone. I was diagnosed with Crohn's Disease Yesterday, at age 34. I had 3 strictures with 2 widen yesterday as well. My doctor wants to start me on Budesonide 3mg, Imuran 50mg and Remicade infusions. I am terrified as I am reading the side effects of these drugs. I am getting married in October and really worried. Any advice would be greatly appreciated. Thanks in advance
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- Thread starter linds08
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New to this site. Recently dx with Crohns. I thought I was going crazy. New position at work , dx with fibromyalgia in 03 so figured it was stress. Also had stress at home. No biggie always had belly issues but nothing to this sort. Now that I have a dx makes more sense but not in yrs would I have thought crohns. The constant pain is making nutty. Current rx is prednisone and go next wk for humira consult. Terrified of this. Any advise ? And experienced people on this medicine? . Dr says he has had amazing results with his cronies and would give it to his own family. I'm very confident in my dr. Highly recommended. Still nervous. Currently a smoker also. I yes will quit. Says I have no choice. That too will be a challenge. Help ? Thanks for any input
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I am currently on Humira and no major side effects. Everyone is different. There is a Treatment section with a subsection called Humira. You could try there also.
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Hello and welcome to the forum, I'm sorry I've only just seen your post so apologise on the delayed reply.
Being newly diagnosed is a very scary time and it's totally ok to have nerves, try to remember though that the drug side effects are only a maybe, of the hundreds of thousands of people on those medications, a very small amount actually get the bad side effects. They have to tell us about all those things that could happen, but the likelihood of them happening to you is very small. The most common side effects are things like feeling a bit fluey for a few days or having some joint stiffness or headaches and these usually pass with time.
Budesonide is a mildish form of steroid, and I find it really helps reduce my symptoms when I'm on it, it doesn't have as many side effects as the more common option (prednisolone) and can be taken for a slightly longer period of time. It's not a long term drug but should help get you feeling better while the other drugs start to take affect.
I personally didn't get on with Imuran, but there are many people on here who have found it massively helpful, and who have been on it for years without any significant problems or side effects. My doctors think I am just in the unlucky 10% who are hypersensitive to these medications. Make sure you are getting regular blood tests and use good sun screen and that will really help to catch any problems before they get big. Some people find they feel a bit nauseous for a little while after starting this, but generally find this passes with time and can be helped by taking the tablets at night time so that you sleep through the worst of the side effects.
I personally found remicade really helped me, I was unlucky to have an allergic reaction to it, but I still honestly believe its worth a try. There are many people on this forum on this medication and if you go to the treatment section you'll find lots of experiences and advice about it.
Your doctors wouldn't be recommending these treatments unless they really thought it was worth it. Remember that this is all early days for you, and sometimes it takes some fiddling around before you get the correct treatment plan for you. Crohn's doesn't have a one size fits all treatment, so what works for one person may not work for another, but with a bit of perseverance and good communication between yourself and your doctors, you can find the best fit for you.
In terms of some general advice, you can try keeping a food and symptom diary, which will allow you to see if there are any specific foods that set your symptoms off, this is usually different for everyone so can take some trial and error.
If you get stomach or joint pains, you can take basic painkillers like Tylenol, but stay away from NSAIDs like Ibprophen or Aspirin as these medications can increase gastrointestinal bleeding and cause ulcers, both things people with IBD are at higher risk from. If you need stronger pain relief, you can talk to your doctor about taking something like codine or tramadol, but watch out for constipation (your doctor can give you something gentle to prevent this).
If you suffer with nausea, you can try ginger tea, I personally eat ginger biscuits, and you can ask for an anti sickness medication like cyclizine or metaclopramide if its a persistent problem. Peppermint tea or sucking on mints/chewing gum can also help this, and can also be good for stomach cramps.
Have a good look around the forum and have a read of some others experiences and see if theres anything helpful to you. If you have any specific questions or worries, or just need a place to vent, please know we are here for you. We might not always have all the answers but we will always do our best to help, and at the very best can offer an understanding ear. We're all in the same boat here so there's no need to be embarrassed or worry about judgement.
