Mild but persistent Crohns, Azathioprine not helping much

[AlexV]

Hi,
I am 28 and have been diagnosed with Crohns disease for about 4 years. I have had 2 colonoscopies showing mild/moderate patchy inflammation of my colon.
I have mild symtpoms - mainly lower abdominal pain which is rarely horrendous but it is very persistent and can be around for many days at a time often accompanied by mildly loose stools. Otherwise I am well. I have also had some periods of a few weeks/sometimes more with no or very mild symptoms.
I just wanted to ask the advice of members of this forum. I know a lot of people have worse Crohns than I but I still find the disease an ongoing problem.
Pentasa was no help and I actually suffered from bad pericarditis which was an assumed rare adverse reaction.
Entocort was good but I was on it for a year and was told it was bad to be on for longer (understandably).
I have been on Azathioprine 2.5mg/kg for 16 months. I think it has helped a little and I have tolerated it well but I am currently experiencing ongoing mild symtpoms and my GE has suggested stopping it.
I just dont feel I am getting anywhere with this disease. I have tried lots of other "therapies" like LDN, omega 3 supp. Etc to little effect and Diet and lifestyle choices apart from limiting alcohol dont appear to affect it. Although I exercise and eat healthily.
I am due to see my GE again soon, i think he might suggest Humira but I dont know if that is too drastic? I am worried about side effects and that it may just be like Aza and not help that much.I was very reluctant to start azathioprine and am dissapointed after giving it a really good go that it hasnt really helped me.
I would love to hear from people with similar symtpoms/experiences to me and find out what if anything has helped you

Thank you

Alex

 

[DougUte]

Hi Alex.:welcome:

I have had a severe course of the disease and the only thing that helped me control it, besides my surgery, is Humira. Pentasa, sulfasalazine, etc. did nothing for me.

If other meds are not working for you then it might be time for Humira. But If I was in your position I would make sure I have exhausted the other meds first.

Good Luck to you.

 

[shamrock15]

Aza's relative 6MP didn't really stop crohn's for me. The combination of remicade and aza has. It is possible that you may require a small dose of something such as remicade to finally put it down. Worth a discussion with your GI.

 

[mstirling]

I have newly been diagnosed with mild crohns and recently been put on Imuran and another round of Entocort. I'm not sure how long it takes for Imuran to work and/or if Entocort is suppose to take care of diarrhea but neither seem to be doing the trick. If I don't take an Immodium capsule a day than food goes through me like water. I still have a lot of joint pain in the morning that gets better throughout the day only if I take Tylenol-Arthritis but still can feel pain. I'm just getting frustrated cuz I been dealing with feeling crappy now for a month. What else can I do to feel better?

 

[Axelfl3333]

I think mild should be banned from describing crohns.when it plays up its never mild for the person suffering it.i,m supposedly mild and can relate to AlexV prolonged periods of pain,constipation,the trots and long periods of just feeling unwell maybe to strong but just not feeling right it's very frustrating.ban mild!and like AlexV can go a while being mostly ok

 

[Catherine]

Welcome to the forum

There is blood test for azathioprine levels. My daughter disease is not controlled by Azathioprine at 2.5 per kg.

Testing of the levels allow her GI to increase her azathioprine dose to 200mg which is a dose rate of 3.5 per kg.

Note azathioprine is used a much higher rates for other conditions.