Fell out of remission, looking for some advice

Exactly 2 years ago I was hospitialized and got into remission with IV sterioids and a taper to 4.8g of Mezavant (Lialda) daily with a 2g Salofalk enema nightly.

Went down to 2.4g of Mezavant daily in 2016 and things were tickety boo until the end of April 2017 when I went to pass some gas one day and I noticed pink mucous. Uh oh. Still having normal bowel movements once per day though.

Went to see GP he thought a 50mg prednisone course for 7 days would hit the spot. And things went back to normal pretty quick.

Unfortunately, 2 days after the 50mg prednisone course finished, back to having some bloody mucous. Started to get a little diarrhea and cramping. Diarrhea was always first part of bowel movement followed by a longer normal well formed stool.

Talked to GI. Upped Mezavant to 4.8g and 2g Salofalk enema twice per day and 1g Salofalk suppository twice per day.

Two weeks in to start of flare now and diarrhea and cramping continued, diarrhea continued to be first part of bowel movement followed by a longer normal well formed stool. Some small blood streaks and a little mucous and blood at the end.

I had been off prednisone for 10 days by this time.

Went back to GP as GI was out of town. GP put me back on prednisone with a long taper down starting with 50mg prednisone for 10 days.

I also started taking slipper elm twice per day.

As of today 12 days into prednisone and starting to taper down to 40mg and then decrease by 5mg every week. No cramping and generally feel good. However, diarrhea continuous to be first part of bowel movement followed by a longer normal well formed stool. Some small blood streaks and a little mucous and blood at the end of movement. Continue to have only one bowel movement per day.

Have a scope scheduled for 15th of May which is good.

Complicating factors for me: I have cutaneous lymphoma, so anti-TNFs and possibly Imuran are out (although Methotrexate is good).

Questions/Adivce:
- Should I be worried that the pred isn't getting me all the way there or do I have to be patient?
- Will the meslamines along with the pred eventually get me into remission?
- Should I start readying myself for surgery?
- Anything else you guys think of I should be doing or trying?

j

getting into remission with pred is pretty much being up sh!t crick without a poodle - you really are not gaining a thing while the possibility of permanent damage grows every time you use it -

ditto on the slipper elm - give it a toss for now -

i have been off all meds for a while since i ditched eating grains (and a few other minor things) - have you made any diet changes since you DX ?

Update:

• Still having a small amount of bloody diarrhea followed by normal but blood streaked stool. Only have urgency once per day. Not too much cramping and gas pains.
  
• Still on max ASAs orally and rectally plus prednisone (40mg daily).
  
• Blood tests are normal for C-Reactive Protein and all other markers.
  

GI booked me in for a sig scope today and the results were normal rectum, normal distal sigmoid colon and moderate to severe inflammation on remainder of sigmoid colon. He could not see further up as it was a sig and there was normal well formed stool in the ascending colon.

GI wants to see if there is more inflammation he could not see with sig scope so booking me in for full colonoscopy on Friday. Stay the course on pred until then.

GI feels that because blood work is normal that is a reassuring sign for pred. Visible inflammation is the next thing he worries about.

Still, he feels biologics are in my future but that is complex as I have lymphoma.

Lots of specialists now converging to figure out what to do.

Any thoughts?

My future look like pred to methotrexate?

j.

Update:

Colonoscopy didn't reveal much that was new in terms of inflammation:
- Ascending colon has defined vasculature that may show previous inflammation but no current visible inflammation
- Transverse colon normal
- Proximal descending colon normal
- Distal descending colon to proximal sigmoid colon has sharp and defined inflammation pattern that lasts for about 20cm. Inflammation is severe with superficial ulceration.
- Distal sigmoid colon normal
- Rectum normal (oddly, with 2 small apparent ulcers and no inflammation)

In sum, there is a patch, roughly 20cm long of severe inflammation that starts approximately 45cm from anus. Everything else is mostly normal.

GI thinks this is strange for UC and is considering changing diagnosis to Crohn's.

GI took about 12 biopsies all along colon which will inform updated diagnosis.

Given Crohn's potential, GI does not think 5ASAs will achieve remission, and believes biologics are most potent option. Does not feel more or different rectal meds will be effective.

GI is evaluating that subset of biologics that aren't strictly anti-tnfs like Entyvio. In addition to lymphoma considerations, need to go through screening for blood or immune issues that would contraindicate biologics.

Plan to stay on steroids (40mg) until biologic option evaluated.

Love your thoughts, they have been most helpful from above!

j.

Quincy,

Original diagnosis back in 2004 was proctitis based on sigmoidoscopy, I can't remember if biopsies were done.

Original c-scope in 2010, unfortunately I don't have the pathology results. At the time i wasn't flaring.

Second c-scope in 2015, from last time I was hospitalized, reported similar findings to this most recent one when I was also flaring although I believe the section that was inflamed included all the sigmoid and most of the descending. In that c-scope transverse was normal and ascending had similar erythema to this most recent c-scope but in that case she though she saw possible minor inflammation. Pathology wasn't particularly conclusive but at the time the hospital GI doc (not my regular GI doc) deemed it possible Crohn's or atypical Colitis.

j.