Support and Advice Please

Looking for some support and advice after my endoscopy and colonscopy on Friday.

I had, what I thought, was a mild flare in December. I began using cortenemas and actually feel pretty good, aside from a bit of tenderness in my abdomen. For a variety of reasons I switched to a new GI who wanted to do an endoscopy and colonscopy to assess the level of inflammation. Well, turns out I no longer have left sided colitis but severe pancolitis. I have been hesitant about taking meds for the UC because I developed lupus within 2 months of starting Lialda. Nobody knows if the mesalamine caused or triggered the lupus or if it was a coincidence. So I feared taking meds and buried my head in the sand for the last year thinking I could control this disease through diet alone. How wrong I was. I am still fearful of the side effects of the meds but I am even more afraid of losing my colon which has now become a stark reality in my mind after seeing the pictures of my colon.

After the colonscopy I spoke to my doctor and while we don't have the biopsy results yet he wants me start Remicade and Imuran. I have my follow up with him on March 1st to discuss the treatment plan. Can you guys give some advice and/or support, I am really struggling and need some reassurance from the UC experts on this site.

Post Edited (Mrs. Brady) : 2/26/2016 12:51:24 PM (GMT-7)

I say step-up to Imuran or 6mp ALONE (with maybe a uceris bridge). Keep remicade in your back pocket for later and make that clear to your GI (if you heed my advice). My longest remission was brought on by imuran and asacol alone (along with a 2-3 week pred burst in the beginning). This was enough to quell my pancolitis beast at the time, kept me in remission for maybe 7ish years? My opinion anyways, don't exhaust your options unless you absolutely have to.

How bad are you symptoms (number of bms a day, urgency, etc)? How severe was the inflammation seen in the scope? You said pancolitis (extent) but not severity (typically, mild, moderate, or severe).

I ask because Imuran might take 2-3 months to reach optimum therapeutic (healing) levels within your body, it's a slow acting medication. If things are pretty mild, perhaps you can afford to wait and only try imuran.

If your symptoms are pretty bad and scope severe, then adding quickly working steroids and/or quickly working remicade (about 6 weeks for a response) does make a lot of sense.

My symptoms really are not bad. In the past few weeks I go once or twice a day, no urgency, no diarrhea, no blood or mucous but I have been on the cortenemas since December. This weekend had a bit of urgency with blood and mucous but I suspect that was from the scope. The inflammation is severe in the transverse colon, there were some ulcerations in the descending colon, the distal sigmoid and rectum were not ulcerated but I suspect that's where the enema is reaching.

Regarding the severity, maybe you can shed some light on what the report says. He stated severe, but here's what's on the report:

Mayo 3 ulcerative colitis of the transverse colon with heaped up folds and filform pseudopolps and ulcerations that were almost mass like in appearance and small petechial. Lesions scattered throughout the transverse colon.
Mayo 3 ulcerative colitis on the descending colon, 30 cm from the anus was a 15 cm stretch of erythema, edema, loss of vascular markings, ulcerations and deformity. There was viability to contact.
The distal sigmoid and rectum were relatively spared with sparse erythema.
Skip lesions may reflect partially treated UC with steroids vs Crohn's disease
Do no think that this is fulminant coliits, there is Mayo 3 involvement with deformity of the descending colon
Increased risk of stenosis
Pseudopolyps, increased risk of malignancy
High risk for adverse complication from the disease. I would recommend aggressive medical management.

Post Edited (Mrs. Brady) : 2/22/2016 2:34:00 PM (GMT-7)

That report changes things. You might want to have a pow pow with your dr and treat accordingly.

I knew it was severe but denial can be a stronger emotion than fear and in my case clearly my coping mechanism. My GI did state that I need to have an annual colonscopy going forward. Thanks for taking the time to respond and provide feedback on the test results. I tried to decipher what it all meant but not being a doctor and relatively new to this disease I clearly did not grasp what it all meant. I am coming to terms with the fact that I need to get aggressive with treatment and I will follow his recommendations and begin Remicade and Imuran. Again, thanks for the feedback, I truly appreciate it.

Filiform Polyposis-I'm completely unfamiliar with that pathophysiology. I still think you can quell inflammation with a Uceris or Pred bridge until the imuran kicks in and reevaluate then keeping TNF options for later. You said yourself that Uceris was able to bring some normality for you a time back? It sounds logical to me to go back to what you know worked for you at one point in time while also jumping on the immunomodulator (6mp, imuran). Heck even for remi the primary end point with most short-studies are 8 weeks (through your induction doses), will you respond after one dose or will it take the full induction regimen? You're going to need to get on a prednisone or uceris for a bridge regardless of whether it's a bridge for the imuran alone or bridge for the remicade imuran combination.

For nothing more than perspective, I was hospitalized with pancolitis, severely anemic, had gone through a few bags of blood transfusions (all during my first flare/initial diagnosis) and was on the brink of having my colon removed. You are your own best advocate for all this. A cocktail of steroids, imuran, and asacol got me out of the hospital and into remission.

I'm actually surprised your doctor doesn't have you on pred or uceris at the moment, so you're no longer on 5asa (lialda, asacol hd, etc.)? Get back on! Regardless of the decision you make (steroid+imuran+remi vs steroid+imuran) I wish you nothing but the best!

That's great bring lots of questions to your gastroenterologist visit. Many of us have ideas/suggestions but it's your ultimate decission.

Yeah, prescriptions for imuran and uceris can easily be sent and picked up at local pharmacies and there's a good chance they're in stock (or can at least be shipped in promptly). Remicade approval takes a series of weeks, and you must also be screened for current and past signs of tuberculosis (a tb test under the skin, and usually a chest x-ray as well) before starting it is allowed.