Does Crohn's Spread?

[suschex]

My Crohn's is in my entire colon but only in my colon. What I am wondering is if it will always just be in my colon or can it spread to other areas. Or do they even know if it can/can't or will/won't spread. I guess I am searching for a positive to hold onto at the moment since I am not getting better even after 4 weeks on Pred. and starting to fear that my colon is too far gone (many years undiagnosed/untreated) and that they will have to take it out.

Just wondering if anyone knows....

 

[chrisnsteph1022]

I don't think it technically 'spreads' but it can definitely move around. My first flare was in my terminal ileum only. This flare it was my terminal ileum and my entire colon. At my last scope, it's gone from my descending colon, but still in ascending, transverse and TI.

 

[LindaS]

Crohn's can affect any area of your digestive system, from your mouth to your anus. Before I was diagnosed, after over a year of suffering, I had sores in my throat. Once I was treated, they went away and never came back (knock wood!). For many years my Crohn's was located only in my terminal illium and surrounding area (and the anastamosis site after my first surgery). Now I have ulcers and inflammation in that area, plus throughout my large intestine and rectum.

There is no way to tell if it will spread, but treatment is the best way to prevent or limit it. Sorry I can't tell you what you want to hear.

 

[Carrie630]

Suschex, I wish we could tell you it won't move or get bigger Crohn's can affect you anywhere from mouth to anus. There's no promise that it will only stay in the place it's initially found. The best way to try to keep it from spreading is to try to get into remission and follow your treatment regime. There aren't any promises though, even with treatment. Without treatment, it would almost definitely spread and cause further issues.

 

[suschex]

Thank you all so much for the honest answers! I just need the truth now no matter how it may feel to hear.

I am staying on the Pred as directed by my GI. We are moving to Humira as soon as he consults with the infectious disease specialist because my TB test came back as "indeterminate". If I can't do Humira due to the TB result then he is going to try 6MP on me and hope for the best. I will do anything to get it under control and in remission...life is long and I want it to stay that way

 

[spcwife23]

im feeling the same way yall are, im going crazy trying to figure out what to do to get into remission.. i do the eating thing, the excerse thing, the not eating late at night thing.. im on prednisone and 6mp which is not working so im being put on humira, hoping by goods grace one day we all know what remission is.

 

[suschex]

im feeling the same way yall are, im going crazy trying to figure out what to do to get into remission.. i do the eating thing, the excerse thing, the not eating late at night thing.. im on prednisone and 6mp which is not working so im being put on humira, hoping by goods grace one day we all know what remission is.

Hang in there...I can hear in your words how much you are struggling.

I can tell you that the one thing I have found to work at least some in the mean time is sticking to a mostly liquid diet...broth, nutritional drinks like Boost or Ensure (I buy the generic), jello, mashed potatoes, saltines...I eat small amounts (like...1 cup broth or one shake or a cup of jellp or 8 crackers) evey 2 hours and make sure to get plenty of calories so that I stay as healthy as I can but at least this way I don't set off as much pain or constipation. It doesn't do much for any of the other symptoms but hey, anything helps!

 

[EmAitch88]

when i was first diagnosed, by colonoscopy/ct, it was in my large and small intestine. still is. recently, i'll get heartburn way more than i ever did in the past. and when i had my endoscopy in September, it showed ulcers in my duodenum. so, i believe it's "moving" around.....luckily, my last colonoscopy showed a somewhat healthier looking inside of me! :dance: