No Crohns Symptoms - Hate me yet?

[Dave G]

47 yrs old, decent health, rarely sick
Had a silver dollar size pain to touch in right abdomin (1st time ever) - literally no other symptoms. This was 8 weeks ago.
24 hrs later (couple CAT scans), had surgery, pathology confirmed Crohn's Ileocolitis...area of large to small intestines.

So I lived with Crohns pain for all of about 72 hours.

My "flare-ups" over the years consisted of only flu like symptoms (achy muscles/joints) lasting 12 - 24 hrs (no fever, vomit, etc...)...had these maybe 4 times a year. Never knew what they were...until now...No other reoccurring symptoms - except 23 yrs ago fissue/fistula anal region (only symptom that I could check on the Crohns symptom list).

QUESTION: Doc's recommend AZA (Azathioprine). No other drugs. Since I have no symptoms to "cure", do I take the drug? Its supposed to put Chrones into remission (no further surgery).

Are the side effects AND the possible lower immune system diseases/issues better than possible future surgery?

If I do not take AZA, what are real issues? If I take AZA, what are real issues?

I'm looking for advice from real people battling Crohns.

 

[Emily]

In my opinion, it's best to take the meds. I learned my lesson when I didnt take them for 10 years, and as most people on this forum can attest, if you have Crohn's and don't take anything, you have a pretty good chance of needing surgery. I have taking Azathioprine before and I found relatively no side effects, and it reacted pretty well with me. It does slightly suppress the immune system, but then again, pretty much most Crohn's meds do that.. If your doc wants you on it, then he determined that the benefits would outweigh any risks for you.
Good luck in your decision!

 

[Crohn's 35]

HI there :welcome:. Glad you joined us and you get a wealth of info here. Now, for the AZA is an immune suppressant to stop your body from attacking itself. It can help reduce the swelling of inflammation. IF you dont take it, you could get worse or end up with a bowel obstruction and it is 100 times worst than child labour, trust me I know. The only other drug less invasive (in my experience) is pentasa, and I am surprised he didnt recommend that or Asacol.

Do you have any bleeding? I would make sure you tell your doctor what your intentions are, otherwise he can't help you if you get worse. Sorry not much help. If you get a reaction to it, report it. Good luck.

 

[Slim Johnson]

Azathioprene can cause pancytopenia. Your doctor can do bloodwork to determine if this is a risk for you.

As far as what's good, and what's not.... Well, that is a big can of worms there. The medications work differently for everyone. I for one, have not really had much luck with most of the drugs on the market. Prednisone, Ciprofloxacin, and comfort meds are all I have really been able to work with. The biologics felt like more of a band-aid than an answer. YMMV.

Don't fool yourself into thinking that because you don't feel any symptoms, that you aren't sick. Having surgery already puts you on the worse side of things.. I would suggest you follow your doctors advice. If you think that they are full of beans, ask another doctor.

Also, fish oil is as good as, or better than Asocol, or Pentasa. Fish oil is as effective as the other drugs for some, without the liver damage, and other side effects. Again, YMMV.

 

[Dave G]

Thanks for the quick replies!

I'll bring up Pentasa and Asacol and see what she says.

Since I have no symptoms today nor in past (except flu like weary muscles for 12/24 hrs) - including no inflamation, I was wondering if the AZA would do more harm than good.

I guess the problem is that maybe I don't know when I am inflamed. I know the readers will say "you'll know it fella!"...but thats the problem with me is that I have Crohn's but don't have any of the symptoms. No issues with food, weight, poop, skin, stomach, etc...

But from what I have read so far, AZA doesn't have too many side effects...

I welcome more feedback on those who have experience with AZA.

 

[Emily]

Dave one more thing! When i was talking about not taking meds for a long time: that was when I felt best and with no symptoms, even though inside I was slowly becoming more and more inflamed until BAM one day, I was needing surgery. Kinda like what just happened to you, except you were able to enjoy symptom free life for 40 years. Does that make sense? I guess what I'm trying to say is that even though it's easy to say "I feel great without meds, why take them at all?", you may only feel great for so long, before it's too late and you need surgery.

Sorry for the little ramble, but I made the conscious decision to be med free when I was younger and I greatly regret it and don't want people to make a similar mistake.
-Emily

 

[Dave G]

Thanks all...I really appreciate it!
I'll dig around the forum some more tomorrow...

 

[archie]

Hi Dave like u I was symptom free til last yr when I ended up being sick for about 12 weeks then an abscess then perforation and long story short had a resection in the same area as you. Pre surgery they had me on pentasa and pred an post surgery off everything and still am. I'm not recommending you do this but both my surgeon and GI haven't said I need anything an I'm happy and feel good so long may it continue. Don't get me wrong I would prob take something if they thought I need too but recent scopes have shown no active crohns and mild inflammation in the duodenum which I occasionally take Nexium for. There were a few ulcers back at the resection site but apparently harmless. I am having regular 6 monthly reviews though to keep an eye on things I don't even get vit b12 injections although I might get this checked again soon. If you doc is recommending meds though your prob better to go with his advice. Keep us posted

 

[Sparkle2012]

Thanks for the quick replies!

I'll bring up Pentasa and Asacol and see what she says.

Hi - I am curious if they put you on Pentasa and if so, how are you doing with it? I don't have a diagnoses of Crohns (CD) confirmed yet but I just had stricture surgery for ulcers and blockage and feel great. I have never had a problem with food other than big meals that block my strictures - numerous temporary bowel blockages over a period of 20 years and don't have the chronic D. that accompanies CD, I have the opposite. Doctors think this might be resultant of too much aspirin but if it is a CD diagnosis my meds plan is Pentasa and 6MP. Have you had any additional issues? What is your meds program?

 

[Dave G]

I gave myself weekly shots of Methotrexate for a few months, then they added Remicade infusions, then stopped the Metho shots.

Now just every 8 weeks Remi infusions.

Been 14 months since diognosis/surgery...

Bloodwork "indicates" no inflamation, good overall levels, etc... So going well so far. No real side effects of Remi so far.

Side Note: Methotrexate made me feel aggitated, grumpy...which I didn't realize until I was off of it...I wouldn't recommend Metho. Give me every 8 weeks infusion of Remi anyday!

Hope all works out for you.

By the way...I have never had issue with D...maybe 1 -2 a year due to bad food. But not as a symptom. I actually had opposite of D. Make sure your doc's know about people like me...no symptoms, then surgery! From forum and doc's at hospital, there are a few of us out there...

 

[Sparkle2012]

Dave: we need to educate the GI's....my diagnosis and treatment has been delayed for years and years because I was not "skinny" and therefore Crohns was ruled out. I am a chubby chronically constipated possible Crohn. No Dx yet. Thanks for your update.