Where do I go from here?

You're almost in the same boat I was that pushed me to make my decision on surgery. All medications failed me and prednisone was the last to fail and my quality of life was zero. Remicade did work for me for about 3 years. I eventually was getting the infusions at the highest dose every four weeks near the end as my symptoms were breaking through before the next infusion. We were using prednisone to bridge the gap so to speak when my symptoms crept back in before the next infusion. We stopped Remicade for Entyvio which didn't work at all and I finally made the surgery choice due to quality of life and being a prisoner to my home.

it does seem wiser to have continued aspiro with the humira. Pred does not count as it is inly intended to let meds like aspiro or Humira get a foothold.

2 months may not be enough to evaluate humira. Maybe another month.

Unfortunatley Remicade is a TNF blocker similar to humira. It might be better to try a biologic that is not TNF. like anti-adhesion or JAK inhibitor.

for most diet can affect symptoms day to day. But there is some disconnect between doctors and patients. Most GI will tell you right out that they are trying to eliminate inflammation and prevent cancer. Many have far less concern about patient quality of life and symptoms.

it seems that for most diet is not a primary cause of UC, nor is it the main thing in eliminating inflammation - unless there are acquired food hypersensitivities (hopefully temporary).

But for most, eliminating trigger foods will manipulate gut microbes for better symptoms, or avoid a food hyper-sensitivity, or even avoid gas, which is really bad when there is blood and mucus. Also, some supplements, like tumeric, or fiber that promotes byturate fermentation, can help maintain remissions as well as low dose mesalamine. SOme (maybe many) have had some improved symptoms with probiotics.

For SOME, diet has had more impact on inflammation and both symptomatic and histological remission. There is some trial and error here and that data is really noisy. Most docs do not see patients often enough to make sense of such noisy data or day to day symptoms.

if the symptoms include urgency, and the inflammation in the rectum and lower sigmoid is marked, used of mesalamaine enemas (at least until remission) may be useful.

I would ask about a non-TNF biologic, restarting aspiro, play with a food diary, and give the biologic a few months to work. Another course of Uceris might help the other meds get a foothold.

You can do some trial and error with food and supplements, but do not expect your GI to be heavily involved in this.

good luck

iPoop said...
Have you had a recent stool test to rule out pathogenic causes to your symptoms? Like C Diff?

No I have not. Do I ask for one from my gastro?

Have you tried adding rectal meds? I'm not in remission but they still make a big difference for me. If I skip even one night of my Canasa, I'm a mess the next day with urgency and blood.

If you didn't start flaring until you were completely off pred that means you were able to get to a fairly low dose without flaring. That's good. I'd go back on pred (maybe 20 mg) and taper more slowly. When you get to the end, do a very slow taper (like 2.5 mg every other day when you get to the very end).

tex_mason1 said...
No I have not. Do I ask for one from my gastro?

Yes. Standard flare protocol, verify the cause isn't pathogenic as the symptons are identical.

JLou said...
I also don't agree that diet doesn't help because I see a major difference without meat and processed foods.

When GI docs and researchers say diet doesn't help they are talking about disease activity - not symptoms. We know that diet can help alleviate symptoms - that is why GI docs often recommend a low-residue diet whilst in a flare.

Rather, the "diet doesn't help" conclusion comes from research showing that diet does not improve or worsen actual inflammation / disease activity. And, as we all know, disease activity and symptoms do not always correlate. (Would be great if they did - it would mean far fewer colonoscopies for us folks!)