Where do i go from here?

[ThatGuy2006]

So here I am after a while of trying Vedolizumab with no avail. I'm having sharp pains from my lower left side, all the way to my anus that don't seem to subside. I've expended pretty much every medication out there and I have no clue what to do. I'm barely able to eat unless I use MJ which I'm not too fond of but, hey, it helps right now. My question is, anyone know where to go from here? My biggest fear is getting my colon removed at 21 but if it helps, I'll consider it. I've already had one resection and I flared 2 months after. Anyone with a bag or in a similar position able to give me some insight? Thanks a lot guys!

 

[Jeff D.]

I'm in a similar situation. My entire colon is flared up with severe or moderate/severe Crohn's and in a week and a half I'm getting an ileostomy. I would suggest that you don't get your colon removed but that you have a loop ileostomy done so you can get back to life. You should definitely talk to your doc and see what he says. I'll pray for you

 

[ThatGuy2006]

Thanks alot for responding Jeff. I'm back on pred 20mg for the time being and my joints (ankles and knees mainly) are on fire. You ever have this problem?

 

[Jeff D.]

I've never had much joint pain except before I was diagnosed but that could have been something else as well. I'm sorry you're on pred right now and I hope you get better soon.

 

[ThatGuy2006]

I just got back from the CCFA take steps walk in charleston, sc and I've got a feeling that may not help them lol. Thanks alot man!

 

[RobK]

Thatguy2006, I was in a similar situation about 2 years ago. Seemed like my body would not respond to any medical drug except prednisone.

I decided to take matters into my own hands and discovered that a large number of crohn's patients were having success on specific carb diet SCD. It was definately challenging diet but results were almost imediate. Only thing was I still would have flare ups from time to time and had to go back on prednisone.

After doing more research I discovered a drug called low dose naltrexone LDN and this put me over the top! I haven't had a flare up in over a year and I'm slowly introducing some foods back into my diet. Some other great things about LDN is it's not expensive and has hardly any side effects.

A good webside is www.ldnscience.org

Good luck,
RobK