Crohns Denial

[Loshy79]

Had my first appointment with my GI today and its left me totally confuddled :ybatty:

The doc said because my crohns was so severe before my surgery he would like me to be on medication to help prevent it reoccurring.

TBH, I didnt realise I had severe crohns....I had super bad pain on my lower right side, messed up appetite, weight loss, but non of the other stuff which most of you guys suffer with on here. He said it was severe due to how fast it moved through my bowel spreading inflammation, scarring, fissures etc.

From the moment I woke from surgery, I instantly felt better, and have been ever since. Appetite normal, gained weight, pain free, loads of energy.
I just figured they've cut out the bad bit, Im OK now

The med he wants me to take is Azathioprine, and after reading up on it, it sounds terrifying! Why would I take something thats going to make me feel awful, and possibly very very sick, while Im totally symptom free???

I need to a lot more reading up on the pros and cons and I have a couple of weeks to decide while I wait for the results of the TPNT(?) test.

Any of you guys been in a similar situation, could really do with some advice
Danni xx

 

[shamrock15]

Don't worry too much about Aza - for many of us there aren't a lot of side effects. I haven't had any serious ones in the two years that I have had it. Depending on your age and hairstyle, it might have some effect there! Why take it? It stops part of the inflammation process from happening, thus reducing the chance of a serious flare and possible future surgeries. I have had crohn's for 25 years and 6 surgeries to go with it. Near the end of the surgeries, I was averaging a couple months per year of work and surgery every two to three years. Since remicade and aza about 4 years ago, I haven't missed a day (literally) to crohn's complications (I have missed some work due to remicade appointments through). For me, they work. That's why I take them.

 

[Mountaingem]

I am unable to take Aza (allergic) but my best girlfriend has been on it for 14 years. It has totally suppressed her disease (autoimmune hepatitis) and she is able to work full time and lives a full life.

I asked her about her side effects for you and she said initially it makes you sick but your get used to it. She said she needed 6-8 weeks to get totally used to it, but bear in mind she started it in the hospital during a near-fatal flare, so YMMV. Be very careful about being in the sun and use sunscreen daily whether you are planning to go out or not. Also be careful not to get dehydrated, drink 2-3 quarts of water a day. Beyond that she only notices mild fatigue once in a while.

Any medication that is reversing an autoimmune disease process is going to make you sick initially; mostly because the disease doesn't like the interference of the medication. So all of us go through a "breaking in" period. Please don't let it discourage you. Crohn's can have very serious complications if left untreated, as I have experienced firsthand.

Your doctor will give it to you when you have no symptoms because (a) it's easier on your body to get used to it when your aren't flaring and (b) the underlying inflammation process goes on long before any symptoms manifest themselves.

I hope this helps and best wishes to you. By all means the more educated you are on the meds you take the better off you will be. Hang in there and stay strong!:hug:

 

[Sailorluna]

I started aza after a resection in June 2010. At first it was a little hard on my tummy but when I split them into half at night and half in the morning it took care of that problem. No issues with it since.

I also felt great after the surgery but it did not last long. I thought I was cured but that stuff was still in there working away on my guts.

It can be scary reading too much comments since people with bad experiences are more likely to shout them out for all to read than people who had good or moderate experiences. Good luck finding your path going forward.

 

[Loshy79]

Thank you all for the advice and reassurance

Ive spent the last day or so reading up Aza, think Ive read every single thread in the Treatment section :ywow:

There are a few horror stories, but it also helps sooooo many people. Someone wrote about making an educated decision rather than an emotional one....such good advice!

So if I get the go ahead after the TPMT results Im going to give it a go. I'll be closely monitored with weekly blood tests for the first month or so, then monthly tests after that.

Just down to me now to not get totally paranoid at every pimple that appears, counting all the loose hairs that come out, lol.

Danni xx

 

[kss]

Loshy79,

Your post was about a year ago it looks like. What happened?

If this is your life after surgery: "Appetite normal, gained weight, pain free, loads of energy" then why on Earth would a physician put you on a medication? It's very likely you don't need a "maintenance" drug.