Going back on meds

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KMae
New Member


Date Joined Sep 2017
Total Posts : 2
   Posted 9/7/2017 7:24 PM (GMT -6)   
Hello. I was diagnosed with CD when I was 19 years old. I was treated pretty heavily with a multitude of drugs until we finally found one that worked (Remicade). I have never had surgery. After about two years the disease was fully under control. Unfortunately my doctor left the country and I went to a new practice. When I switched doctors they rescoped me and decided my case was very mild and I went off the drugs. Unfortunately after that I stopped keeping up with my appointments and I guess I considered myself cured. It had been years since I had seen a GI doc (I'm 34 now) but two years ago I started having bleeding which brought me back to the doc. The bleeding was from internal hemorrhoids but they wanted to scope me since I hadn't been seen in so long. At the time and now I'm pretty much non symptomatic other than some not so serious IBS symptoms. Nothing like a flare. I know exactly what that feels like. They found mild to moderate acute ileitis. They then followed up with a CT Enterography which showing mild mural thickening without mural stratification. What I gather from all this is that I have a very mild case that has been in remission for about a decade. Is it really necessary for me to be on medication? They want to put me on Stelera or Remicade. I wanted to get pregnant so I was able to hold off on drugs but now I'm four month postpartum and they want me on meds. Any input would be appreciated.

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1615
   Posted 9/7/2017 11:33 PM (GMT -6)   
Whether or not you should be on medication is a tough call. You obviously haven't had severe disease and haven't needed surgery, but you do have some active disease. Eventually that could lead to problems necessitating surgery. Or it might not. Too hard to know. It might be years, even decades, before you'd need surgery, if at all.

Your mild disease might have been in remission, or it might have been 'smoldering' along at a low level.

So do you take meds to prevent *maybe* needing surgery down the line?

Are you symptomatic now from the acute ileitis? If so, maybe Entocort could help with that.

As for taking stronger meds as maintenance, ask yourself what your quality of life is like? Is it good now without meds? If your symptoms aren't bad at all, it's hard to justify costly meds that *might* have lots of side effects. Are you terrified of a possible future surgery? Are you wanting to do *anything* to prevent surgery? If so, go on meds.

If you're doing ok now, consider just a watch-and-wait approach, meaning you see the doctor every year and get a scope or MRI/CT every year or every other year. That way you can keep on top of things. If they start to show problems, you can get on meds. If you continue to cruise along without much significant inflammation and permanent damage, then you can stay off meds.

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1739
   Posted 9/8/2017 3:01 AM (GMT -6)   
I think Beave has given you excellent advice. Almost always, the answer to this question would be that meds are required. In your case, you seem to present very mildly, and for a significant period of time.

I would definitely give Entocort a try, It's effective for TI inflammation, and stay well monitored, both with regular blood work, and diagnostics, but particularly with your day to day symptoms.

KMae
New Member


Date Joined Sep 2017
Total Posts : 2
   Posted 9/8/2017 7:17 AM (GMT -6)   
Thank you so much for taking the time to respond. I think you have both helped me make my decision. Although Crohn's is a serious and scary disease I do believe my case is mild and can be monitored with my semi annual blood work and yearly check ins. As always I'll keep aware of what's going on in my body and if I feel a flare I will be in that office in a second. Sometimes the drugs can be just as scary as the disease and when your disease is as mild as mine (at least for now) it seems the drugs are not always the best option.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9921
   Posted 9/8/2017 9:02 AM (GMT -6)   
I second trying a course of Entocort. It targets the ileum, is relatively safe for a steroid (provided you don't stay on it for years at a time), and is quite effective. I would take something, just because chronic inflammation isn't all that healthy, even if you don't have any symptoms.

I would ask your doctors why they are recommending Stelara or Remicade for a case that's supposedly so mild though. These meds are meant for moderate to severe disease, not for mild disease that's in remission most of the time.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)
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