"Deep" Remission - Worth it?

I used all of the biologics and they failed. Entyvio worked the longest, for about a year, and then I re-entered a major flare.

I had to dig deep in research and get myself into remission through alternative means. It's been a year and there's no sign of my UC. My bowel is experiencing deep healing.

Biologics certainly create dependency, but if you don't have another strategy to try on your UC and you're not research savvy for looking into alternative methods, you might be wise to use the biologics for now.

poopydoop said...
orry but I am research savvy and tried many many many alternatives without success. Please don't judge those of us who are taking the strong drugs. I tried 2 biologics and they didn't work well for me. I'm now taking xeljanz (not a biologic) which does work. I already have anxiety about the possible side effects but as I wrote above living without these drugs was not an option for me.

Zero judgment from me. I think you should do whatever it takes to get better. I don't hold one type of medicine superior over any other!

I was just telling my story, that's all.

That's an impressive list!!

poopydoop said...
Of all the drugs I've been on, the only one that did any lasting damage was prednisone (--> severe osteoporosis. And yes i took calcium supplements every day). Another reason for doctors using a top -down approach is to prevent the need for prednisone. Especially with crohn's it's regarded as "a short term solution to a long term problem".

This makes sense, too. I worry what the pred has potentially done to me.

Good luck, greenuc!

I don't feel comfortable sharing my methods because they were complicated and some were controversial. It'll just turn into an argument and that won't be good for my mental health. I also can't guarantee that what I did will work for others.

MarkWithIBD said...
I used all of the biologics and they failed. Entyvio worked the longest, for about a year, and then I re-entered a major flare.

Thanks for posting that.

I only tried Entyvio but UC was so unmanaged the last 4 months of it that I had a 2-inch long blockage develop in my heart resulting in heart attach and emergency procedure for a Boston Scientific 2-inch long stent.

I was feeling VERY boxed in on Dual-AntiPlatelet-Therapy while having active UC flare. DAPT doubles your chance of GI bleeding.

After surgery I was basically chained to the hospital bed in the ER and when I could not get to the bathroom I told them I was leaving. We stayed till the morning after they explained leaving would trigger insurance not paying.

After comparing patients with and without IBD, researchers found that patients with IBD were more than twice as likely to have a heart attack as those without IBD.

https://www.cardiosmart.org/news-and-events/2018/03/inflammatory-bowel-disease-makes-heart-attack-twice-as-likely

So I have to be DAPT for a total of 6 months after which I must remain on single because of the complexity of passing thru a branch in the heart vessel part of the stent cannot be fully endothelialized and remains a foreign object in the flow.

I was so miserable I was talking to the Infusion Internist and my GI doc about going to the riskier biologics. I also did not want to submit to the functional docs extreme diet. I know my diet do's and don'ts.

Maybe the heart attack was the best thing that could happen to me. I found the 2017 Atorvastatin I refused to take, as I did not want the associated mind fog and they seemed to cause D. While that was only 20mg I am now taking 80mg now and with all the Apple Pectin each day I have no inflammation, no cholesterol ( all flagged LOW on bloodwork ) and am eating foods that used to blow up my GI tract. For some reason I could never consume amino acids post workout and clearly whey protein caused some inflammation that plant protein does not. I can also chow down those huge protein cookies from Lenny and Larry, the two crazy guys on the package. They have chicory/inulin which I always had a near allergic reaction to but now I toss back a couple large pectin pills and eat thru 1 or 2 big ones without any issues at all.

It has been a crazy journey. I had things stabilized in 2015/2016 but taking over my parents lives for the next 3 years disrupted the approach I had then which was a little fragile. Being oncall 24x7 and 100% custody of 2 adults and one child by myself kind of steamrolled me flat. I climbed aboard the Entyvio bandwagon and it carried me through all of 2017 and half of 2018.

I think I have it from here. Travelling deep into a west coast mountain state soon to close out my parents estate because this approach is durable and portable and I want to feel the freedom I became accustomed to before 6 months of hell that I do not wish to ever return to.

I hope everyone finds what works for them.

I started Entyvio yesterday. Good thing too as my UC symptoms were starting to get worse in the days leading up to the infusion. Hoping Entyvio plus Lialda can take me to the fairy tale land of deep remission.