new, looking for ideas and encouragement

Hi everyone,

I've looked at this forum in the past for ideas and information, and finally broke down and joined. Tomorrow will be exactly a year since the flexible sigmoidoscopy that gave me my UC diagnosis (although my first flare likely started more than a year before that). Unfortunately not a very happy anniversary as I'm experiencing the worst flare to date. Progressively worse watery BMs for the last month +, urgency, L side pain, cramping, bloating, feeling miserable, etc, etc, with the blood and mucous starting again in the last few weeks. So frustrating! I've been on Apriso pretty much consistently for the last year, except for running out of it for a week (thanks to my not so great student health insurance and Salix's terrible prescription assistance) last November (after which it never really seemed to work as well) and a trial of Lialda that didn't work either. I've also done the Rowasa enemas off and on which generally seem to stop the bleeding (annoying though they are). Also did a taper of prednisone starting in Feb or March and continuing through the middle of June to essentially get me through the end of grad school. I kind of thought that once the stress of school was over I would be all set. Unfortunately, my current symptoms started about a month after stopping the prednisone.

Broke down and went back to my GI doctor this week. The plan for now is to continue the Apriso and do a month of the Canasa suppositories twice daily (which is new for me), holding off on the prednisone for now. If I'm not doing better after that, they want to do another flex sig (although I'm not really sure how this information will change my tx anyway). After that, they're telling me the next step is the biologics, which seems scary.

I'd love to hear any advice about things I can try and/or talk to my doctor about, or even just words of encouragement. I'm just so disheartened at this point, and feeling like I'm never going to feel better from this or that I'll have to take medications that are terrible for my body forever.

Thanks in advance!

Yes Rowasa nightly retention enemas are good. A lot of people like myself are having great luck with diet modifications, specifically I am on the SCD diet. At first it was difficult, but now it is my way of life since it keeps my symptoms away so I can live my life.

Also I started SCD the same day as prednisone 30mg and tapered completely fine I believe this is because I did SCD. My Dr. did his part by giving the meds and I did my part by eating a diet that works for UC.

(http://www.breakingtheviciouscycle.info it's totally worth a shot)

Yellowbird,

Welcome to the forum.

Glad you've found us, albeit not for being a part of this terrible club.

Don't be disheartened.

At first it's all so overwhelming and scary.

But as you learn, ask questions of fellow UCers who are here for you, and read up on it all, it gets easier and info is empowering.

Having been through rough patches and feeling desperate as if I was doomed for life, and that being confirmed by my GI who, when traditional meds failed me, and gave me a choice of remicade or colon removal, I finally refused his options believing there must be a better way. And I am living proof that there is, and there is hope out there for all of us.

I had to find my own way, and I was able to control my UC into remission through  a combination of diet modification, certain important supplements, probiotics, and LDN, low dose naltrexone.

AND now that you do have this disease, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

 

BTW, I bet you are low in vit. d3, when did they last check your blood serum levels?

I hope you feel better and let us know how we can help you.