Just stop burning:(

[mardonahue]

I wish that my intestines would just stop burning...sign

 

[UnXmas]

Are you in a lot of pain? What treatments have you tried?

 

[mardonahue]

My intestines burn from 4 inches of either side of my belly button, I have 20 cm of effected area according to the MRI, I was finally diagnosed 2 years ago and have been on Remicade since September every 6 weeks, I became allergic to everything else. I also am suppose to take methotrexate and folic acid with it, but it makes me sick. I also have joint pain that sucks. I have been experimenting with MM, and it does help...The remicade has help with some of the bathroom issues, but still daily burning pain, and most days still super tired, doing anything makes me burnt out.

 

[David]

Welcome to the community. I'm so sorry to hear about the pain you're experiencing

It sounds like you may not be in remission. Has your doctor discussed the idea of increasing your Remicade dose or frequency?

 

[mardonahue]

I was every 8 weeks, they tested levels and bumped me to every 6 weeks, I see the dr again in August to discuss how it is going...

 

[David]

That just happened or you've been at 6 weeks for awhile now?

 

[mardonahue]

I started it in September 2014, I have had 3 6 weeks appointments.

 

[kellehbeans]

Hi Mardonahue,

I know what it feels like to have my insides burning constantly too - so can totally empathise with you on this one. Have they told you to go back and see them a little earlier if you have no improvements at all?

Sending a big hug your way - take it easy.

 

[mardonahue]

My GI office is great, if I call they will get me in as soon as they can, but I have had worst days, so I am holding out for my August appointment, I so rarely have made it to my actual next appointment...There are some improvements with frequency, and I am learning to live with the pain, and medicate as needed avoiding Tylenol as taking 4 at once is still not enough and I am not much for pills...The remicade has helped, just the pain is overwhelming sometimes, from my lower back down, and shoulders down to my hands some days, makes life with 3 small kids...interesting lol