Question about being diagnosed with Crohn's Disease

[SunshineSmile]

I just was diagnosed on Monday with Crohn's Disease and I am still confused on how this illness works... When you get treatment, does that completely stop the disease from spreading and getting worse? Or does it just make the symptoms of the disease calm down, but the disease still spreads? Because I keep hearing that many people get surgery after so many years of having it but these patients are all on treatment, so I just wanted to get all this cleared up. I'm just unsure about a lot of the details :shifty:

Thank you!

 

[tishbite]

From what I understand if a medication is working then the disease is not spreading nor causing problems. You can reverse inflammation i believe but obviously not scarring. Sometimes body's become immune to medications or they simply just stop working. I took Remicade for 3 years and all my symptoms started to get better then out of the blue my body wasn't responding to the infusions so I went off them. I've thought about this question too and would want to hear what other people have to say who know more about it then I do.

 

[SunshineSmile]

Tish, thank you for responding so quickly! I understand what you are saying, that makes sense. I've had my body become immune to something as simple as Immodium, so I'm sure that can happen with medications for crohn's. How are you doing lately with crohn's??

 

[tishbite]

Yeah, of course. My crohn's is kind of at a standstill in terms of treatment. I'm only taking 25 mg of methotrexate weekly and I forgot to take it last week :/ I have some really bad narrowing in my lower intestines and just started getting my appetite back recently. I started school today and I see my GI doc on the 28th & have a lot to talk to him about. Like new treatments/surgery if the narrowing gets too bad. Plus the pain has been excruciating lately.Ah, I don't know. How are you & yr crohn's doing?

 

[Emily]

I think my understanding is that you will always have Crohn's... it is a chronic illness which will cause inflammation throughout your life. To control it, the best things are immunosuppressants or steroids which reduce your bodies inflammation response.
But, if a part of your bowels are so inflamed and screwed up beyond the point of being fixed with medication, the best thing to do is take it out with surgery, and then get on some good meds to keep the rest of your bowel under control, so that you won't be needing more surgery.
Hope that lil' ramble made sense

 

[SunshineSmile]

So sorry to hear about your pain Tish. And I was JUST diagnosed on Monday after suffering from stomach pain for 8 years! It took long enough, but unfortunately because they took so long to find it, It's spread pretty bad. I haven't had any treatment yet, but getting treatment on Monday from the mayo clinic. Hope to start feeling better soon.

Emily- Your lil' ramble definitely made sense lol That's what I thought about Crohn's. Gosh, I'm glad I have this forum with other people who have Crohn's, because it is overwhelming.

 

[tishbite]

I was lucky to be diagnosed quickly. I have always had smart/progressive doctors. I remember about a month after my stomach pain started I was diagnosed. I am sorry it took so long for you! That must have been so frustrating. Good luck with your treatment.

 

[SunshineSmile]

Tish, yeah it was very frustrating, and every doctor I went to just told me it was IBS... soooo finally found out it was IBD Crohn's, kinda caught everyone off guard! I'm just glad they found it now, better late than never right!? Just upsetting that it is Crohn's.