Girlfriend recently diagnosed with crohns.

Hi all,
First of all I feel I need to make it clear that I am not really sure what I am trying to achieve on here. I am hoping to gain a bit of a better understanding of crohns. I did research online after my girlfriends diagnosis and every website has some monotonous Wikipedia style page which tells you everything on what crohns does to the body, but nothing on how it and its treatments whether medication or surgery affect people. I am hoping to get some feedback from people who have crohns or live with someone with crohns.
I suppose my first questions are on the medication. Any feed back would be greatly appreciated.


She is currently taking

• Azathioprine ( I believe this is an immunosuppressant)
• Budesonide (Steroid)
• Vitamin b12 injections

Is there many common side affects from these. I am particularly interested on feedback on the immunosuppressant, and a female perspective on the steroids would be great. However any info would be fantastic.


I don't know if I am asking the right questions and I am sure I will have more soon enough. I am fairly new too this and I want to try and keep one step ahead if I can. Because to be totally honest I don't ever want to feel as useless and clueless as I did in the time leading up to her diagnosis ever again.

Thanks in advance

Joe

HI Joe. Sorry to hear about your girlfriend.
Finding the right concoction of Meds can be a tough process, I hope she finds what works for her.
Budesonide: is a steroid that is supposed to mainly be absorbed locally in small intestine, so not cause as much systemic problems as prednisone can. Usually it is short term use, however I've been on 9mg/day for about a decade and it definitely helps control my symptoms, I am unable to wean off, I'd end up having another bowel resection, so my MD thinks risks/rewards is worth staying on it. I have regular blood work and screening for osteoporosis, so far so good.
B12 injections are because B12 is absorbed in small intestine and if you have disease there, often you'll get deficient. I've taken b12 injections for close to 20 yrs, no problems.
Azathiaprone: I took this a long time ago, before my resection, but didn't tolerate it. My white blood cell count got crazy low. So I switched off immunosuppressant and went to biologics, Remicade. I also take Lialda.
Hope that helps.

Hi Joe and welcome to the community. I'm sorry to hear about your girlfriend.

If I was going to really take the time to read up on one of the medications, it would be azathioprine. I'd check out our forum dedicated to it located here. That way you can get a lot of experiential insight.

All the best to you and your GF.

I have been on azathiaprone. I believe it thinned my hair but I don't think I have noticed side effects from the other two.

I have a 20 year old daughter who will have been on azathriopne for almost 4 years.

It is amazing how much her health has improved on this medication. She actually has less colds etc on the med. But when she does get a cold it can take longer to go away. One major cold on aza (12 weeks). Before aza multiple colds every year.

Showing her compassion will go a long way! Crohn's is a very isolating diagnosis. You rarely
know someone else who has it. Not very many people "see: you as sick because they don't "see" the disease. I say good job for reading up on it! I was diagnosed at 28, I am now 52, have been through many ups and downs with the disease and my husband just this past week started reading about it!

She is lucky to have someone proactive with her! It will mean a lot to her.

I hope she feels better soon and good luck


Lauren

It is moving.

Hi joe.. i took aza in my early days of being dxd. After about 6ths tho i started being sick after i took it. My liver levels went sky high. Had to come off it. It can be a good med if you can tolerate it. Best wishes to you both

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Yo Joe,

Budesonide - alot better than the dreaded pred(nisolone)

B12 - the nurse always tells me that the injection 'might sting':rof:I have Crohn's...I got used to injections long ago

Azathioprine - tricky one. Many people say it's the worst thing ever but I've been on it a long time no probs (need bloods done regularly to check though). If your body tolerates it, why not ? If it doesn't, it's not for you.

Word to the wise - this Crohn's thing is a marathon not a sprint.

All the best to you and yours.

Viviany said:

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I have been on Imuran for several years. At one point, after testing my blood, they said there was too much Imuran in my blood and they cut it by half.