decision time...and a slight rambling vent

I had a colonoscopy last week, and saw my GI this morning to discuss things. I have moderate inflammation in the terminal ileum, but everything else looked good. Fortunately I'm not really having any symptoms right now and I would say this is the best my CD has been since I was diagnosed 6 years ago.

I'm currently just taking Pentasa. He's recommending I try cimzia or Methotrexate (in the last 18 months I've tried imuran, humira, remicade and 6MP) because he's concerned I'll be at a higher risk for surgery if we aren't more aggressive. He doesn't think pentasa is overly effective and doesn't seem convinced it's going to hold me in a symptom free state. However, he's leaving the decision up to me since I'm not having any symptoms right now.

I've had a really rough year between humira and remicade, and am still experiencing a little joint pain from those drugs. I'm really not inclined to try anything else right now. I know that just because fatigue and joint pain were side effects of humira and remicade doesn't mean that cimzia would cause that same reaction. So on one hand it's nice the GI knows that it's been tough for me, and since I'm not showing any symptoms, is fine if I decide not to step things up again.

I started taking B12 in September after the last set of blood tests showed that it was low. I figure in part that my B12 is low because there's still some inflammation in my terminal ileum. So I worry that if I don't step back up to the big drugs, then I'm just setting myself up to be sick again soon.

I've really been making changes in the way I eat, and while my doctor doesn't believe it will have any impact, I do believe that I can help reduce the inflammation process in my body (at least to a degree) through diet and supplements. I'm seeing a naturopath too, and I just think it's a good path. My GI did admit it doesn't hurt anything, but isn't necessarily support of an alternative approach.

So I'm left with the decision to stay the course of pentasa and some of the alternative options, or a path that I'm quite honestly reluctant to go down. It's inevitable at some point I will have to give those drugs a try, but is it irresponsible to postpone that option?

On the other hand, it's kind of overwhelming to make this decision!! What if I make the wrong decision?! :-\

Sarah

Hi Sarah,
What were your clinical findings and symptoms on diagnosis? Is the inflammation in your ti an improvement over how things were before? My doc tends to go with low intervention, but I have no idea what is the right choice. Try to get his best recommendation, and a second opinion if you want, and then trust yourself to make a decision. You can always change your mind if what you pick doesn't work. Good luck!

Sarah, what caught my eye in your post was your comment that despite the presence of mild inflammation in the TI, you're not having symptoms. And then two paragraphs later you mention joint pain.

It is really impossible to distinguish the cause of the joint pain - I mean to tell if the pain is leftover from your trial of the stronger drugs, or whether it's really from the inflammation. For me, it is simple to tell you that joint pain has been one of my most significant issues, and I have never taken anything stronger than a 5-ASA.

My GI's position (I realize all of the docs are different, and there is clearly a philosophical bifurcation between those who want to treat aggressively and those who don't) has been that I will not progress to stronger meds, because my CD is mild and will stay mild. He has added sulfazine to my treatment as a more effective approach to the joint pain (and it worked well). I decided to go gluten free to see if that would help other things, and it did.

So if you're looking for advice, I'd say stay where you are with your meds and play with your diet. Consider the joint pain from a slightly different point of view - could it be due to the fact that you have inflammation in the TI? Perhaps a trial of entocort (effective best in the TI) would help answer that question for you.

Thanks Everyone!!

So the inflammation in my ti is reduced from the last colonoscopy 14 months ago, and my colon is completely clear, so it's all improvements since I was diagnosed 6 years ago. Disappointing that despite 6 or so months on humira and 2 doses of remicade that the inflammation is still there.

It is a hard decision!! It helps talking here about it, and I so appreciate everyone's perspective. Kazbern, I think I do worry a bit that the joint pain I have now might be part of the Crohn's and it's worrisome that my B12 is now low too. When I saw the rheumy at the beginning of the summer, he suggested I talk to my GI about bumping up my meds to help with my joint pain. It's shame they can't clearly tell what causes it. I've been off all biologics since the middle of December, so it seems like that should be out of my system.

It makes me want to cry when I think about what a long road I've been on for the last 6 + years. Last year at this time, I was pretty much symptom free in terms of my intestines, but was exhausted beyond belief and could hardly get up the stairs to my apartment, and it got a lot worse. I think for the first time in a year, I'm in place where I can focus on my diet, and I'm trying to do some things to help the joint pain like yoga, and know even more exercise will help.

My gut instinct (ha!) is to give myself a break from these meds, and just continue my pentasa and keep working on the diet and exercise. Ok...there...I've got a decision. I'm going let this go, and get ready to enjoy my vacation that starts Monday.

Sarah