Does anyone out there have any last suggestions?

I personally would have surgery. I was in a similar situation, on pred for long periods of time, no remission... I had surgery and I am doing great now. The icing on the cake is that I've lost all of my prednisone weight. I haven't had my petite figure in years, I sort of assumed I lost it with age, but apparently, it was the UC drugs, not age allowing me to carry that extra 15-20 pounds. Surgery is not easy and the recovery is sort of grueling because it's not like you're at your best after it's done, it's a process. I have improved a ton since I got reconnected. At least go on some consults and see how you feel. Definitely do a lot of research on surgeons in your area. They say the #1 indicator of a good result is your surgeon's skill level.

Other than surgery, you could probably try cyclosporine, but you would need to be in the hospital for treatment. I also can't see avoiding the polyp situation forever. I also don't see any options for maintenance after the cyclosporine. You're pretty much down to trials... I am so thankful I had surgery. I am off all drugs, I don't think about UC or toilets much anymore. I go when I need to and I no longer have urgency.

Have you had stool tests recently?

Hi notsosicklygirl, ByeByeUC,

Many thanks for the response. yes, they did a stool study last month to rule out infection and did a CBC. Blood work showed really high inflamation levels and high glucose. I will look into cyclosporine perhaps; have not heard of this one before. Sounds like you both have had great success with the surgery. Good to hear, honestly surgery scares the crud outta me :) - however I am realizing my options are limited and I may have no choice soon.

Thanks again...

Post Edited (Help8675) : 2/17/2016 8:59:30 AM (GMT-7)

Hi The ITIS,

I actually forgot about VSL - I tried this a few years back with no success. I will look into Xeljanz. Many thanks...

Surgery is scary... I was shocked that I was at the point where I had to face it. I actually didn't opt to try any trials because it was just going to push me back a few more months in the process of surgery. I wanted to be done with UC. A lot of these medications fail after a period of time, not for everyone, but for people like you and me, who have failed med after med, the chances of us finding something that works long-term seems to be really low. Is it worth pushing back surgery to go into a trial where you get a few months of relief? I never tried cyclosporine for this reason too. Would it be worth it to push back surgery to have a few good months from cyclosporine? I felt like it wasn't worth putting that drug into my body. Now that I am off everything, I question whether there was a point in putting any of it into my system. I was just a non-responder. I got no benefit from any of it. I guess I had to try to know.

I like the idea of trying VSL#3, but it's so expensive. I tried VSL, not DS, but regular a few years back without result. If you haven't tried it, perhaps that coupled with a strict diet may help reduce inflammation. In my case, diet was completely unrelated to the inflammation. I could eat nothing and still go 10x a day blood.

My GI said Xeljanz wasn't showing great result in trials and for a non-responder like me, my chance of response was almost none. I've heard of people trying stelara too, but it's off label or trial. My GI said I could try it but she wasn't hopeful. i wasn't either. I just wanted to be done with all the ups and downs.

Help8675- I will go with surgery at this point.

Below article shows if you are making the right decision.

http://journals.lww.com/ibdjournal/Fulltext/2015/01000/Surgical_Management_of_Ulcerative_Colitis_in_the.21.aspx

15 years of meds is not the issue. uncontrolled inflammation is the issue. taking meds for life is NOT a problem that needs surgery.

Yes its a chronic illness, most of us will have it for life. In 15 years you have had no relief? ;-(
Its easy to look at surgery as a cure but it reall should be last resort. You are losing more then your colon. Please read Poppies thread, i think Kevins reply to her is in invaluable.

Only you know what your situation is and how much strength you have to either get out of the flare by trying new things, or different combos of what you have already tried.

You and your trusted doctor. Go to the ostomy board and read thise threads. ThOse will be your problems after surgery.

Really talk to your doctor and dig deep within and you will know. If you have any doubt you are not ready and will most likely wonder. If there is no doubt, talk to dr.

I wish you all the best! Oh and did you try LDN? Canasa in the morn and with enemas at night? Also Apriso? Sometimes a diff form of pill kicks in. Try another GI with different ideas! Most of all, dont lose hope either way! Xoxo

"You are losing more then your colon"

yes, i've also heard that you may lose that uncontrollable need to consume large quantities of elephant ears at the fair !

actually dm, what is it exactly that you are losing besides the beloved colon ?

iPoop said...
It's a bit troubling that you have osteopenia and pre-diabetes, as both are irreversible long-term side effects of prednisone. You've been on prednisone far to long.

Both are reversible, aren't they? I got osteopenia from my time on steroids; I hope that has gone away or will go away. That said, even if everything is reversible, the topic creator's steroid dependency is still troubling.

Help8675 - I think your GI has you on too rapid a pred taper considering how long you've been on it for. It's almost as though he's panicking now and trying to get you off pred ASAP, but that almost certainly won't work. People who have been on pred for years can and do get off it, but usually they have to taper very, very slowly - I've read of people decreasing by 1mg per month. Not sure you need to go that slowly but I hope you can see that dropping by 5mg every fortnight is too fast - it will kill you (not literally but it may feel like it) once your dose goes below 10mg.

I think getting off pred is your only chance of saving your colon at this point. I was in a similar boat to you 3-4 years ago - hopelessly steroid-dependent. In the end I gave up trying to get off it and just booked surgery. In retrospect I never tried a really slow taper and I wish I had done, just once. But on the other hand, I don't really think it would have made any difference to the eventual outcome.

Did you have any response to the biologics at all, incidentally? Did they not work from the start or did they work for a while and then stopped working?

My understanding is that osteopenia etc can be addressed in part if you opt to take the necessary drugs and/or diet modifications and exercise....this maybe through slowing as suggested above (so that your peers catch you up) however it is through doing far more than simple calcium supplements. It will absolutely not go away on its own once you're ahead of the curve so to speak.

Many thanks to all for the comments and suggestions. NiceCupOfTea I think you may be on to something with slowing down the taper. Last time I did this I got down to 5mg and wound up rolling all the way back to 40mg daily. I think I might try 5mg taper per month for the last 15mg vs every 2 weeks. The Doc even mentioned he could prescribe 2.5 mg pills. For the Vitiamin D they put me on a weekly 50,000 unit pill - I was scared of this dosage at first but seem ok so far. I have had some success with the biologics in the past - helped for a little while. Still really dont know if the Entivio biologic is helping - been trying this one for 6 months. Doc has increased the frequency from 8 weeks to 6 weeks. I get one tomorrow - hoping it helps.

DMC2011 - Apreciate the comments on what the colo does outside of processing waste. The serotonin hit is really something to consider. Wonder if anyone in this group has had to go on meds to compensate this?

Post Edited (Help8675) : 2/18/2016 1:54:24 PM (GMT-7)

notsosicklygirl said...


There are many people who have lived very full lives after surgery without any crazy serotonin regulation issues (evidenced by my own experience and what i've found reading and researching all over the place - not scientific and you should take it's value as minimally as I would the other stuff you read above). I don't believe any of this is fully understood at this time. I can tell you, I was much more depressed with UC symptoms than I am without a colon. I'd actually go out on a limb and say my depression has improved quite a bit.

I agree, there is just not enough evidence to support these claims.