Mouth ulcers, blood and pain.

[KayleighMeek]

Hello,

The past few months I have been feeling pretty good and was even able to go back to the gym and was shocked how well I was able to do. Then I have starts getting funny things happening again. Pain in my stomach after eating before eating most of the time really. And now when I go to the toilet having blood again and not a small amount but usually I have diarrhea when the happens but none so far. My mouth is full of ulcers and I even have them on my lips which I haven't had before. Oh and my joints are bad again 2 weeks ago I had a steroid injection into my left knee and now my left ankle is very swollen and hard to walk on so I might need an injection there as well. Plus they think inflammation might be in my back now.
I just feel like I am sitting around, once again, waiting for this pain and symptoms get worse before something is done. And now I don't even know what the next step would be.
Sorry for the rant but it's soooo good to write it down and have people know exactly what you are going through. So thank you for reading xx

 

[Jennifer]

Sorry you're going through all this. What's your current treatment? Have you been tested for arthritis (an x-ray will show if you have arthritis or not)? I'm assuming your GI knows about the bleeding, what's their plan?

 

[KayleighMeek]

Thanks for replying. Yeah I have been diagnosed with enteropathic arthritis for a couple of years now but it's not very well controlled at the moment. I am on 25mg of methotrexate so I am not able to go any higher. I have also tried aza, 6mp, remicade, humira and have been on an off steroids.
The GI knows he wanted me to see a dietician but I know all they will suggest is a low fibre diet which I have tried before when one of the GI's gave me a print of what to eat. I am seeing the GI next month so I am going to talk to them some more then and see what to do I really don't know where we can go except surgery x

 

[Jennifer]

A whole month of possible bleeding? Personally I don't like the sound of that, especially don't like the sound of your GI hoping the dietitian can stop your bleeding through diet. I mean sure the low residue diet is a great one to go on during flares but what do you do when that's no enough and the meds aren't enough? For me I had to have surgery because nothing was enough anymore. But at that time Humira, Remicade, Enteral nutrition http://www.crohnsforum.com/wiki/Enteral-nutrition, and Low Dose Naltrexone http://www.crohnsforum.com/wiki/Low-Dose-Naltrexone weren't around for me to try (yet its possible that things may have still been too far gone for those to work which doesn't mean those meds/treatments you tried and feel as though they failed wont work after surgery). It's possible that surgery might be your best option but in the meantime you can't just be left bleeding for a month. Have you tried EN or LDN?

Also curious if the Humira did anything to help your arthritis symptoms?

 

[KayleighMeek]

I am starting to think surgery is just something that needs to be done no meds seem to last long for me.
I have never tried EN but I have been thinking of doing a liquid diet been reading up on juicing in the meantime to try and rest my bowel a bit.
I haven't looked much into LDN I will have a look at the part of the forum about it as I don't really know what it involves.
Humira worked well for my arthritis for a while but then I was getting swollen ankles the day after injection and then developed vasculitis. I have had allergic reactions to all the drugs I have tried except mehotrexate (so far).
I don't feel this is the worst I have ever been with crohns but I don't want to let it get to that way with no plan. Again thank you for replying x

 

[Laura Dawn]

Sorry , I just got my first mouth sore . I only have one and that is bad enough. I agree with Crabby ... Not liking them making you wait a full month . Keep us posted .