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Ulcerative Colitis
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Posted 8/12/2014 1:20 AM (GMT 0)
I was diagnosed with UC back in 2011 when I had a flare. That flare was treated and I went into remission until March of 2013 when my current flare started. I've been flaring for close to 18 months and feel like I'm running out of options to get me back into remission.

I was initially put on prednisone, which helped at higher doses, but as soon as I started tapering the symptoms came back. I've since tapered myself off of prednisone since any dose below 60mg/day wasn't doing anything for the symptoms.

I've been on remicade for a year now. The normal dose every 8 weeks. I've noticed no change in symptoms even in the days immediately following treatment. My doctor tested me for the remicade antibodies, which was negative.

All along I've been taking Lialda, either 2 or 4 pills per day. I've also been taking Rowasa enemas and cortisone enemas when I feel I can hold them in for more than a 30-45 minutes, which hasn't been in months.

My doctor also started me on 6MP back in April and I'm now on 100mg of 6MP per day.

At this point I'm not sleeping well since I get up 3-6x per night and I'm going to the bathroom with mainly blood and mucus 15-25x per day. I've had full-blown accidents both at home, in the car, on vacation, and at work. Not being near a restroom is darn-near panic inducing, which includes my hour long train commute.

I've recently entered the "try anything" phase and started VSL3 and Cannabidiol (CBD) supplements. The CBD supplements don't appear to be doing anything and the VSL3 seems to be starting to work.

Are there any other options for knocking UC back into remission. I just want my life back.
Posted 8/12/2014 1:30 AM (GMT 0)
Up the Remi to 10 mgs per kilo and try it at 6 week intervals. Have the doc test you at your current week 8 to see if there are therapeutic levels in your system before the infusion so you will know if you are metabolizing it too fast. If that doesn't work rather quickly, you might want to try Entyvio. After that, I have no good options. I am with you this quandary. Hopefully they are checking your blood work frequently. Obviously, you cannot keep losing fluids like you are for much longer. Have you been scoped recently?
Posted 8/12/2014 1:39 AM (GMT 0)
Have you been tested for cdiff? It's symptoms mirror the uc ones.
Posted 8/12/2014 1:44 AM (GMT 0)
My most recent scope was in November 2013. According to the results, the ulcers are only in the last 20cm or so.
Posted 8/12/2014 1:45 AM (GMT 0)
Well there are a few options:

1) Depending on your weight, you can try to up your dose of 6-mp (normally 1-1.5 mg/kg/day).

2) If you are desperate, either ciclosporin or tacrolimus may be able to knock out your flare, but like pred, they cannot be taken long term
Posted 8/12/2014 1:55 AM (GMT 0)
FMT
Posted 8/12/2014 5:17 AM (GMT 0)
I second the c. diff testing. My main issue right now is c. diff and it is like having severe ulcerative colitis symptoms. Although I'm not near 100%, since starting antibiotics my frequency and urgency has greatly decreased.
Posted 8/12/2014 12:54 PM (GMT 0)
I did have a completely new workup done when my GI passed me to another GI in the practice back in November. That included a stool sample. Would that have caught C.Diff?

For my weight, 170lbs, the max dose for 6MP is 115mg and I'm at 100mg, so I don't think there's any room there for an increased dose.

Going to contact my GI and see if going back on prednisone while I wait for Entyvio is a viable option.

I'm scheduled for remicade on the 22nd, can remicade and Entyvio be taken together?
Posted 8/12/2014 1:20 PM (GMT 0)
Stool sample would have probably checked for C-Diff but it is somewhat common for these tests to come back with false negatives when you really have it.
Posted 8/12/2014 1:41 PM (GMT 0)
I'm scheduled for remicade on the 22nd, can remicade and Entyvio be taken together? Nope, one or the other.
Posted 8/12/2014 2:00 PM (GMT 0)
Any dietary options considered? How's your vitamin D level? I would not choose pred because your disease was steroid resistant before and the systemic damage done by pred is irreversible.
Posted 8/12/2014 2:21 PM (GMT 0)
I've tried the Paleo diet and when things get really rough I either don't eat or eat very little, which helps but isn't a viable solution. I've been laying off fruit and veggies for the past week, but that hasn't helped much either. I recently started taking digestive enzymes when I eat since I was seeing undigested food in my stool.

I do take vitamin D (3000IU/day) along with a multi-vitamin, multi-mineral, and calcium supplements.
Posted 8/12/2014 2:45 PM (GMT 0)
A liquid diet (parenteral nutrition) may be as effective as steroids at inducing remission. You can talk to your GI about going on a prescription meal replacement. It allegedly tastes horrible and some people opt to do it via NG tube, but it could help you.

EDITED to add that the use of parenteral nutrition shows a significant improvement for people with Crohn's colitis, not so much for Ulcerative Colitis.

Posted 8/12/2014 4:35 PM (GMT 0)
I think in some individuals going on a diet seems to help but I think in many the reason for that is because you are actually eating less. When you eat less you poop less, making it seem like the diet is helping your UC. Unfortunately, you can't eat less forever so in some cases it is not a long term solution. Having said that, everyone has foods that bother their UC condition and by eliminating the foods that bother you, your UC can improve.
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