Next option?

Hi all, I just wanted to get ideas on where I should go next. I have been in my current flare for over a year and a half and I have run through a lot of treatments with no real response yet. I started with humira for 5 months and saw nothing, I have now been on azathioprine for almost a year and still haven't seen much, and I'm currently on entyvio and have been for almost 6 months now. I have tried asacol, was on steroids for almost a year, Canasa, steroid supps, proctofoam, I've cut out gluten and most dairy, and try to stay pretty close to Paleo as my life allows. I was seeing improvement for a few weeks but then blood, mucus, and urgency all came rushing back.

What do you all suggest would be the best next option?

Did you try remicade? It might not work since you tried Humira without success, but remicade is weight based dosing and it's more flexible. Did you try doubling the dose of Humira before stopping? How about increasing the infusions of entyvio? How about the Aza? Are you in range for therapeutic response?

My other suggestions would be:
#1 surgery if you think you're headed there regardless, as, in reality, if you're not having luck with anything, how long are you going to get even if something worked? Better off without the long-term complications from drugs and flare ups. Life without UC is quite liberating. It's not without its issues but if you're headed that way, may be better sooner than later. At a certain point, I was asking myself how much of my life I was goign to give up for this illness. I had already given up a few years of my 20s & 30s, really unfortunate looking back. All that time I could have been living.

#2 clinical trials, stelara or xeljanz.

#3 fecal transplant.

Have you had stool tests recently? Can you stabilize with Uceris maybe?

DB - Good idea, I have not gotten my stool tested lately. But I must say, a DIY FMT does not sound pleasant!

Notsosickly - I did try doubling up on the humira before I stopped and also it was found that 200 mg of aza was in the therapeutic range. Although, I haven't tried moving up entyvio infusions yet. Strange thing was, it was days after my last infusion that things started getting worse.
I do have a question for you regarding surgery because that's where my mind has wandered at this point... What are the main issues you have found with surgery? Are you able to follow a less restrictive diet and lead a more normal life?

iPoop - I hadn't considered combining them all at once. I honestly didn't think that was an option. I will definitely bring this up the next time I talk with my GI. Thank you all.

Post Edited (Ihatepooping) : 11/29/2017 10:31:48 PM (GMT-7)

Thank you so much for your insight. Honestly, UC has had me extremely down for the last 17 months, but the thought of surgery had always intrigued me while at the same time scared the daylights out of me. I understand that it's about a year long process for most with surgery/recovery. Is that about the time table? I know there's no miracles, but the thought of vastly improving my overall well being makes it a thought worth thinking. As well as that statement you made, going anywhere without thinking of s bathroom. That's the dream. Also, you say you got more often, but you can control it? I.e. no urgency? How many times is average for you?

Ihatepooping said...
Also, you say you got more often, but you can control it? I.e. no urgency? How many times is average for you?

Frequency/interval - A good outcome for a j-pouch patient, post adjustment-period, is 4-6 bms a day without urgency. Those j-pouch poops are evenly spaced out within a 24 hour period (UC poops tend to be clustered closely together shortly after waking up, sometimes even minutes apart). J-pouch poops are quick, and easily done while you pee. If you stop and ask yourself, how many times a day do I pee and at what frequency? It likely aligns with j-pouch poops.

J-Pouch = No Urgency - With a J-pouch, you can hold it for 30 minutes, and hour, multiple hours, and poop once it is convenient to do so. With active UC inflammation in flares, you and I know a poop is going to happen, it is just our choice whether it is in a toilet or our pants (running is often essential).

J-Pouch Adjustment Period - Shortly after your take-down (stoma is removed and j-pouch is 1st used), your bm frequency will be higher as you've got some new plumbing that your body needs to adjust to. You might have nocturnal wakeups to go. It's temporary and things will settle in time.

Having a remission through medications is preferable for those UC patients whom it is possible (for me, remission is 1 formed, non-urgent bm a day without UC-worries). I'd give the medications a good shot, but call it quits once you've given at least multiple biologics a try and still cannot control your UC (you've tried Humira and Entyvio). At that point a UC patient starts to looks refractory (that is non-responsive) to all conventional meds, and surgery becomes more likely.

The question is always: what is your current quality of life, and how much time are you willing to budget to make it better? If you're QOL isn't horrible then you can always buy time to try a few more things. However, if you're completely miserable then surgery might be sooner than later. You're a plausible surgery case having failed two biologics though... Depends on how much fight you have left in you (it's a very personal decision)!

1.) Again, you could try combination therapy for the cumulative affect of entyvio, azathioprine, asacol, and rowasa/salofalk/pentasa enemas. It's plausible it could help, and you've never tried them all at once.

2.) There's the new biologics stelara and xeljanz, clinical trials, and a slew of alternative things (FMT, LDN, etc) that could be tried.

iPoop and notsosickly - Thank you guys so much for all the info. That is exactly the types of answers/information I was looking to gather. It feels nice knowing there are other options towards improving my quality of life. I'll seek the other options mentioned first by iPoop and discuss them with my doctor, but the thought of surgery has always intrigued me. Thank you guys!