NO symptoms- yet they've put me on Aza???

[hleaw]

Hello all,

I'm desperate for some advice!

I had an op 5 years ago, after being on and off ill for about 9 months. Mind you I didn't have symptoms like everyone else, no diarrohea, just blood in my stools and stomach ache. But it didn't stop my life, I went travelling etc. Until I got really ill...

Now, I have just had a colonscopy (after 4 years) and they have marked my ulcers at 1-2 (which apparently means they are good.) I had these ulcers when I had a colonscopy 4 years ago, just after my operation, it doesn't seem to have got any worse. And yes, I have some occasional symptoms but actually Im very well. However, the dr now wants to put me on Aza, which as far as I can see from research is only given to patients WITH SYMPTOMS.

He said it will postpone my Crohn's coming back and that it 100% WILL come back, whether it be 5 years or 10.

But it seems like a really strong drug (at 23) to start taking if I dont have any symptoms???

Has anyone ever been in the same position/known of anyone in the same position??

PLEASE HELP!!

 

[araceli]

Hello. when my daughter was on remission, she was taking asacol in low dose. As far as I know if you take it even when you are on remission it will prevent you from having a very bad flare up. also helps to lower inflammation. Even if you dont have symptoms the disease is still there. It's a strong drug but not as bad as others. best wishes to you

 

[Danico85]

Hi there

Blood in the stools is probably one of the main symptoms of crohns so your doctor is probably right to put you on aza. Ive been on aza for years and havent had any side effects so dont worry.

Nicky

 

[Hope345]

If you feel uncomfortable about taking AZA, ask if there is another medication you could try first: Asacol for example. However, your GI might have a reason for picking this drug and might prevent you from dealing with further complications down the road.

No matter what, you get to decide which medications you take. Deciding which medications to give our daughter, was the hardest decisions we ever made. You only take them if you have to. You could also slowly add more natural treatments like Kefir, which gives your body back some good bacteria.

Our daughter has blood in her stools and the cortifoam works wonders. It just depends on where your Crohns is located.

 

[mcneil143]

I was diagnosed with Crohns in 2010 - I was 31. Had ver y minor symptoms prior to that - but based on my symptomology from previous years (which I had just thought was a unique bowel), my gastroenologist believes I've had Crohns for about 10 years-ish.

My symptoms - mostly normal stools with occasional diarhea, cramping right side especially during exercise and that was it. Until my flare up, which landed me in the hospital.

I have not had surgery yet.

My Crohn's is the hardening of the intestinal lining (in the terminal ileum) and a build up of scar tissue. I was put on Aza about 6 mths after my flare. I've been on it ever since and have seen a decrease in hardening of the area. Scar tissue is scar tissue tho...

No flare up bad enough to put me in the hospital again - knock on wood.

So, in summary - it has helped me.

 

[Trysha]

Three years ago my symptoms were similar., occasional bleeding, a bit of pain
sometimes diarrhoea and I was prescribed cortifoam, worked wonders and then told I could chose a whole list of drugs or do nothing.
Of course I chose no drugs but opted for cortifoam as necessary.
One year ago more symptoms , started Imuran, reacted after a couple of weeks.Back to no treatment.(my decision)
Final outcome three years later after symptoms worsened---Remicade ---just coming up to the third dose.
Be careful which pathway you choose---it may come back and hit you in the teeth.
Doing nothing is the worst option.
Crohn's will always get you when you least expect it.
I had a very patient long suffering GI specialist. He never gave up on me but shortened the time interval between appointments, and every visit I made always offered appropriate crohn's meds.,which I refused up till now.
Hugs and best wishes
Trysha

 

[hleaw]

Thank you everyone.

Maybe I just have to give in.

My boyfriends pushing the natural cure... has anyone ever tried just changing their diet?

I think maybe Im just in denial about my Crohn's. Until Wednesday Id never been told that it would 100% come back...

 

[Hope345]

hleaw,

Check out our Diet section on the front page of the forum: You will find ideas for great diets (<-click here.) It does work for some people, but usually with some type of medication also.

wishing you the best...

 

[lukefarrell]

I've been on aza for 12 years and have no side effects. Whilst the long term side effects can potentially be bad, it's worth remembering that the doctors are trying to keep your crohns at bay and the positive effects of the drug far out weigh the negatives

 

[KWalker]

Thank you everyone.

Maybe I just have to give in.

My boyfriends pushing the natural cure... has anyone ever tried just changing their diet?

I think maybe Im just in denial about my Crohn's. Until Wednesday Id never been told that it would 100% come back...

I'm doing the diet route, among a few other members but just because it works for us doesn't mean it will work for you. I like to refer to use "crohnies" as being like snowflakes because no two cases are alike. There are some very similar ones but no two are exactly the same, and that's why one treatment plan may work for some but not everyone. It's the same as the medicine. I tried some medicine that didn't work for me while that same medicine did wonders for others. It's tough because unfortunately it is a trial and error experience.

With that being said I think the best thing to do is to discuss this with your specialist and let him/her know about your concerns. Your boyfriend may have his opinion about what he thinks he is best, just like the rest of us do, but unless he is a doctor than it's best to make sure your doctor is involved to ensure your safety and well being. Changing your diet is risky, and it also required extreme dedication. I'm on a very strict diet right now and it isn't just something you can change over night.

Lastly, it's not 100% that your crohns will always come back, but there's no guarantee you might go into remission and stay there forever. Some do, others can go as little as 1 year in remission, to well over 20 years. Don't let it stress you out, just take things day by day and keep in close contact with your doctor to make decisions together.

 

[mcneil143]

Yes - I did a major diet change. Although I am not celiac, there is a possibility of gluten intolerance with crohns. My doctor put me on an experimental diet:
-strict no gluten for 30 days
- gluten for 30 days
- strict no gluten again for 30 days

See what the outcome is. You may have an intolerance.

The Paleo diet - which I see there is a post/forum for that - has worked very well for me.

 

[Catherine]

This what our initial plan for Sarah was. Take aza and pred get into remission, then after 18 months of clear colonscopy and mri come off aza. Our gi quoted about 5-10% of crohn patients with mild disease who only have one flare.

This plan went out window when she developed a bowel fistula.

 

[DustyKat]

Hi hleaw and :welcome:

Azathioprine is what is referred to as a maintenance medication and will often be prescribed either immediately following surgery or as a follow on from existing treatment. Both of my children take Aza and have done since resection surgery. Since Crohn's has no known cure and is characterised by periods of flares and remissions then the aim is to keep the disease at bay, in remission, for as long as possible. No one can predict the course of the disease and therefore how long remission will last. I have read of people being in remission for as little as a matter of weeks up to 30+ years. I am hoping for the 30+ x2! :lol:

Both of my children are in remission and have been since surgery, so 6.5 and 22 months respectively. Is it the Aza? I don't know but I guess I don't like to fix what isn't broken so I stay with the status quo. Having said that, my daughter is now 21 and has lived away from home since she started uni at 17. I don't know if she still takes Aza, I have asked a coupe of times and she says yes but I am not going to nag her about it and ask for proof. She has however made significant changes to her diet and they seem to suit her. What works for her wouldn't work for many but she is primarily raw vegan. By that I mean, she will occasionally eat cooked vegetables to be sociable when going out for a meal.

Good luck with whatever path you choose!

Dusty. xxx

 

[hawkeye]

I've been on aza for over 20 years and it has kept things under control. I've had a few flares where I have had to take pred, but I credit Imuran with keepinf things under control.