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Crohn's Disease
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Posted 12/5/2016 11:48 AM (GMT 0)
Hey guys I'm Tom and I'm 21. Just a quick question. Six weeks ago I had a right hemi after my colon perforating and forming a gigantic abscess. My bowel was extremely diseased. (Very long story, but short story I was newly diagnosed, I put off going the Doctors for a while etc so my terminal ileum was extremely inflamed). My question is, I'm currently on steroids reducing and I can say touch wood I have no pain at all I am literally feel so good after this surgery I can't explain. I currently have an ileostomy and I am finding that in my bag I have tiny bits of pentasa that I am currently taking for my crohns. Is this normal? Cheers In advance
Posted 12/5/2016 2:53 PM (GMT 0)
Hey hungrydude, welcome to the forum. So yes, that is very normal to see bits of Pentasa. It doesn't absorb well. That being said, with Crohn's as extreme as yours, you should NOT be on Pentasa. Studies show that it is no more effective than a placebo. You need to be on stronger medications, like Remicade. It's normal to feel that good on steroids, but as you taper off the steroids, your symptoms are going to come back unless you get on better maintenance meds.
Posted 12/5/2016 8:56 PM (GMT 0)
Hey, thanks for the reply! I know what you mean, my crohns was very vicious. Can I ask, now that my diseased part is removed, you still think remicade is needed? I know it will return etc but not knowing when is the problem.. I struggled for around 10 months of severe pains pretty much destroying my bowel before ringing a doctor because I was so frightened.. Chances are I inflamed the colon so much waiting around there was no chance for meds to save me. The terminal ileum was like a battlefield when I went for my cam.
Posted 12/6/2016 1:32 AM (GMT 0)
Hi Tom,

I also want to welcome you. Totally agree with the previous poster. Pentasa is not going to do a thing for you. You're probably feeling pretty well right now as a result of surgery and Prednisone, but if you don't transition to an appropriate maintenance med, you could be headed back down the same road you were on.

Some have very good success following surgery, and can continue without showing any signs of disease, but it's risky.

If you want to try putting off transitioning to Remicade or Humira, then you should be very closely monitored. You should have frequent diagnostics.

When do you have the ileostomy reversed?
Posted 12/6/2016 1:41 AM (GMT 0)
Hi and welcome to HW,
At 21 yrs old and with severe as your Crohn's was, I think you definitely should consider biologics. The docs tend to use stronger meds when you are younger like you are because you have more years to live with the disease and thus higher risk of damage. Please consider getting a second opinion with a GI who specializes in IBD. I am not on meds after my re- section, but my Crohn's was slow growing, and I am 58 yrs old......big difference! Take good care, and I'm glad you are feeling well!
Posted 12/6/2016 2:33 AM (GMT 0)
@hungrydude, yes definitely! Especially since yours was so severe it sounds like. The hard thing with Crohn's is that inflammation doesn't always show symptoms. That's why it's important for us to also get regular colonoscopies, like once every year or two. You could be symptom-free and have your intestines look like a mess. But there have been a few on this forum who have had their Crohn's return full-force after just a few months after surgery. You really, really want to be on a maintenance medication. I know it's not ideal, but it is so much better than repeating this again, you know?
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