Steverino444

Welcome to the forum.

Have you had tests done? What were the results?

A person can have few symptoms and yet be experiencing internal GI damage, and a person can experience some concerning symptoms and yet have little internal damage occuring at that time. You want a doctor that concentrates on both.

Long term inflammation can cause scar tissue, obstructions, cancer and other issues.

Clo

Steve,

Ok... Not good news. Any other tests? Blood or fecal?

I'd start back up on the enemas if you still have them or the script. Id finish the Prednisone treatment plan AND I'd listen to what your GI doctor recommends, then I'd check insurance coverage on what you can expect, what you can afford...and research your GIs recommendations and decide what treatment plan suits you the best. Do it right away and don't waffle.

This all must be implemented very quickly.... So don't waste a lot of time.

Best advice.... Do a top down approach to get this under control ASAP....if possible. (It depends on your insurance. Some insurance companies will only do a top down approach after you've tried certain medications first---which ends up actually being the step up approach. Some people feel more comfortable doing a step up approach though....

Google and read medical studies from reputable sites regarding both approaches. The Mayo Clinic has a lot of studies out there. You have to decide what you are comfortable with and what your end game is going to be in order for you to stick with your treatment plan. What are you willing to live with and what's a deal breaker for you?

I was diagnosed with UC in 2014, then fistulas broke thru, they added Crohn's in addition to... Not in lieu of. 2014 was various easier medications. (Step up approach) I Did not want to use the "heavy hitters". I tried everything to avoid them. I started Remicade in 2015. There was so much damage from the simmering inflammation I developed scar tissue, multiple obstructions and in 2016 I had a colostomy. I still have it and it is permanent. Now before you think oh no it ruined her life....I'm going to tell you....Oh no it saved it and it's made my life better in many ways.....but that does not mean there aren't moments when I wished everything worked normally and I had listened to others or reached out and asked more questions and not thought oh that'll never happen to me.

So the best advice I can give you is find a good GI. See a Colorectal surgeon that will work with him and you to keep you out of the operating room.... And stick with your treatment plan. Know your insurance as much as possible but realize that some things are out of your control.

Please realize, I am biased. I tried to step up approach even when people on here .. and my doctors... Recommended the top down approach. If I had done what my doctor recommended I might not have had as much damage as I did... So my advice may be different than others and it will lean towards the worse case scenario.

Clo

Hi Steve...welcome to the forum!

You need both oral and rectal mesalamines...and I wouldn't wait till the pred is finished.
I also suggest you set up a colonoscopy for a full colon assessment and go from there. As well, get a copy of all your results, including blood testing.

q

I feel like your doctor hasn’t been thorough in explaining your condition to you or his opinion on appropriate treatment for your specific situation. You may also need a colonoscopy since it’s been a couple of years and a flex sig is limited in what it can show. It can give an idea but if you have any active disease beyond that, it can affect treatment decisions. Is your doctor an IBD specialist? Not all GI’s are and I think it’s important to have one that is if possible. There are so many different meds and some may be effective for you while others aren’t, so it’s hard to give specific advice. Lialda, Canasa suppositories, and mesalamine enemas were my first treatments. It does sound like you need some kind of maintenance medication, but I think you have options left to exhaust before you would need to go to a biologic like Entyvio. I second the opinion that you should try both oral and rectal meds until you are well controlled, then you may be able to drop the rectals or at least go to less frequent use for maintenance. Some natural remedies can also be helpful like probiotics, curcumin, some vitamins, and dietary changes. I hope you can get on a good road soon and stay in remission for a good long while!

Steve,

Checking in on you .

You've received lots of good advice from the regulars here. They are an invaluable source of information and support.

I hope you are doing well.

Clo