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Is this the new normal?

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Crohn's Disease
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Posted 10/10/2018 5:52 PM (GMT 0)
Some background - I'm 50. I was diagnosed around age 38. Only symptoms were extreme stomach pain. Given Pentasa and was on it up until last year. Last year, around March, I developed an abscess and related fistula. Had multiple surgeries for 3 seton placements. Went on Remicade in December and have been on it since. It's working, I'm doing much, much, better. I even had one seton removed.

But I'm not back to normal. I have an extreme sense of urgency when I have a bm. It's not diarrhea, either. This is with fairly normal stools. It's just that when the urge hits, I've got maybe 60 seconds to get thee to a toilet. And mostly, the urge comes without warning. So, I sort of have this constant mental clock/awareness of when I last went, when I might go again, where bathrooms are or might be... all that goodness. I wake up early so I can make sure I go before I go to work. If I'm going on a trip away, I'll plan to fast the day before so that I know I won't have to go, try to monitor my food intake in terms of amount and timing, all that craziness. I also still get stomach noise and can occasionally "feel" things moving through my intestines.

And, I get tired. It could just be that I'm 50, but the further away from my last infusion I feel like I'm getting more and more tired. But it's hard to quantify, and I can't be certain that I'm exactly right about that.

So, my question is, is this really remission? I've been in remission before and it wasn't like this. I also am aware that I went through a lot last year and that I have a stricture, so the noise and feeling are probably here to stay until surgery, but is there anything I can do about the urgency? I've never really had to deal with it and it's just awful.

Thanks.
Posted 10/10/2018 11:30 PM (GMT 0)
Certainly doesn't sound like remission to me. You need to provide some more information though. What meds are you currently taking? Have you had any updated diagnostics done since you've been having the urgency issues? If not, I would highly recommend that you get at the very least an MRE. It's the least invasive and very concise.

It's too bad that you were treated with Pentasa for so long. Pentasa is now considered almost totally useless as a maintenance medication. It's very likely that the disease was smouldering during the time you were on Pentasa.

After further diagnostics, you'll have a clear picture of the state of your disease. At 50 years of age, i would think that you should seriously consider a biologic, particularly Remicade. Get some updated blood work done as well. Check you inflammation markers. With the right treatment plan, you can certainly get things under control. Keep us posted.
Posted 10/11/2018 1:52 AM (GMT 0)
I'm on Remicade currently. Only Remicade. Once every 8 weeks. I'm going to talk to my gastro-doc about what we might be able to do. I change my diet to SCD (not super strict and no yoghurt) some time back and while it's done wonders for my waistline, it may have roughly been around that time when my urgency crept up. I can't be sure, though, and the idea of going back to eating sugar/flour/dairy honestly makes me sick.
Posted 10/11/2018 3:48 AM (GMT 0)
Hmm, have you had a colonoscopy and updated blood work? In most cases since I was diagnosed any problem I had was really only solved/properly addressed by the dr actually getting in there to take a look. Even when I explain my symptoms it seems drs don’t really fully believe the extent until they see with their own eyes. I was on remicaide for years and it worked great but then I developed antibodies to it and had to switch to Humira. My dr right now wants to put me on either methotrexate or azathioprine as a booster (which I’m still figuring out myself). If you have that much urgency I’d say at least explore all other options to see if you can make things better. Running to the bathroom is the worst. Noticing how your diet effects you is a great start and I hear you on the tiredness :/
Posted 10/11/2018 2:00 PM (GMT 0)
This does not sounds like remission to me. When did you last have a scope? My gi put his patients on Imuran while on both Remicade & Humira. He said it helps enhance the medication & helps lower developing antibodies. You may want to talk to your dr about moving your infusions closer together, try every 6 weeks. Remicade should be tailored to the patients needs. I had mine every 4 weeks.


Take care.
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