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Flaring and on pred, any suggestions?

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Ulcerative Colitis
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Posted 4/4/2017 12:44 AM (GMT 0)
Hi.. Haven't posted in a while . I have had this dreadful disease for about 17 years . I am now 67.. Started as Ulcerative Proctitis.. and has progressed higher up since .. I am on Lialda and failed Remicade and Humira.. I am put for great lengths of time on Prednisone. Was on 40, went to 10mg.. Stared passing blood clots again, yesterday. Back on 20mg since yesterday. I am afraid of Entyvio.. heard really nasty side effects with it.. Now trying no carbs or sugar.. Since prednisone gives you a ravenous appetite.....I am hungry.. even though I am in pain!!!
I think change of seasons causes my flares.. I don't think it is diet related.. but am desperate for relief. Half of my life is spent in the bathroom .. I miss so many wonderful things in life....
Any suggestions..
Thanks for your help!!!!!!

(I added a subject)

Post Edited By Moderator (iPoop) : 4/4/2017 8:16:45 AM (GMT-6)

Posted 4/4/2017 2:09 AM (GMT 0)
I think the dietary changes are a good idea, but I also think you should consider entyvio. I tried it, and it didn't work for me, but I didn't have side effects. in fact, I had less side effects with entyvio than I had with the other biologics. Have you tried 6mp or imuran? Have you had stool tests? I am always starving on pred too... I had surgery and it's the only thing that's worked for me, aside from prednisone.
Posted 4/4/2017 3:12 AM (GMT 0)
I've done well on a low carb diet, but my symptoms weren't as bad, but I am always anemic. Grrr.
Personally, I'd look into surgery. I see so many past surgery saying they wish they'd done it 15 years ago. No pain, no poo, and no bleeding.
Posted 4/4/2017 3:46 AM (GMT 0)
Surgery will be my last resort.. Still have many options... I will try the Fodmap diet.. Not to restrictive . Then there is the SCD.. and paleo diets. There was a study being done in Boston .. Where yo give yourself an enema- with a solution that adheres to the sick part of your colon ...
There is also cdc oil ..
Posted 4/4/2017 3:50 AM (GMT 0)
What is in the enema?
Thankfully low carb diet keeps my symptoms almost gone. I have minor inflammation, but I had some cell changes in the sigmoid colon. The chances of it turning to cancer is very low, but I'd love to try something.
Rowesa makes me worse and steroids raise my blood sugar. Sigh.
Posted 4/4/2017 11:56 AM (GMT 0)
Try 6MP
Posted 4/4/2017 2:20 PM (GMT 0)
Entyvio has a better safety profile than humira and remicade does, no reason to fear. I'd go on entyvio, and your choice of 6MP or imuran, and a nightly rowasa enema.

There's always more things to try but don't write off surgery entirely. Rather keep it on your backburner and begin contemplating itn as the mental hurdle is always the hardest to jump. We have a number of posters who had great results.
Posted 4/4/2017 9:26 PM (GMT 0)
I just started Entyvio a week ago. Probably too early for me to say much yet, but I had no reactions or changes to my first infusion. I was a little tired the next day, but nothing major, and hard to say if it was from the infusion or not.
Posted 4/5/2017 12:20 AM (GMT 0)
Wishing you much success with the Enyvio.. Let me know how you are doing with subsequent infusions!!!!!
Posted 4/5/2017 1:50 AM (GMT 0)
So sorry you're dealing with another flare. Entyvio does have the least amt of side effects of all the biologists. I think what you have to ask yourself is how bad is it? Are u at the point where you'd rather try entyvio than be where you're at? For everyone , it's an individual decision. I usually know it's time to go to the next store when I let it go too long and am literally left with no other options.
Good luck to you and hope you find some relief soon!
Posted 4/5/2017 2:29 AM (GMT 0)
what type of butt meds are you using 65 ?
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