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Colonoscopy Results - Refusing Pred

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Ulcerative Colitis
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Posted 3/8/2017 4:29 PM (GMT 0)
Hi Guys! Got the dreaded colonoscopy on Monday. Results are interesting...the rectum and sigmoid show "Normal" although in the past that was where I was only affected.

Transverse colon showed severe inflammation, so they diagnosed me with Pancolitis.

I started taking VSL 3 a few weeks ago and was improving. Solid stools, no blood. I told them this and they were very surprised. Said with my level of inflammation they would expect D and blood.

They wanted me on 40mg of Pred when I woke up. I said no, not now. Feel like I was getting better, gaining weight, etc on my holistic changes and diet changes. Then they said ok, go get blood tests so we can eventually put you on Immunosuppresants like Humira....ehhhhh that then made me nervous since we are trying to conceive...

Question - how does UC heal? I know it generally starts in the rectum and progresses up. Does it heal that way, too? Cause my rectum and sigmoid are "normal" whereas before they were inflamed.

Question 2- has anyone straight up refused Pred and tried to ride out a flare? My symptoms now are milder than the Pred side effects. My energy was good and Bms were normalizing (Of course, now, I'm all flarey again after the colonoscopy but I attribute that to the GoLytely and biopsies and hope its temporary).
Posted 3/8/2017 4:43 PM (GMT 0)
Sorry to hear you're flaring.

The rectum is always the very, very last thing to heal with UC. The rectum has the most stubborn and persistent inflammation. Are you currently using rowasa nightly as that could've healed your entire left side? If so, I'd get an oral mesalamine to heal higher up.

Yes people have refused pred and healed in some cases (predominantly mild to very moderate inflammation). However, those with really bad inflammation and symptoms often need steroids. Try without pred for a while if you're symptoms are mild and see if it can be avoided or not. However, if you can't improve or especially start getting worse then reconsider the pred (or at least an oral-delayed-release Uceris which is 90 percent topical to limit your systematic side effects). Just be cautious of a disconnect between symptoms and inflammation levels, as there can be one.
Posted 3/8/2017 5:04 PM (GMT 0)
The odd pattern of inflammation could indicate CD, unless there is a reason (like enemas) your left side is clear. If you had only enemas and no oral, it could explain the pattern. Bad news is your UP has become UC and the inflammation level is severe.

I wonder if something else is causing inflammation of transverse? Ischemia? pathogen? If not due to enemas, the pattern is odd.

With severe inflammation in any part of colon, your risk for colon cancer is really elevated. Since it is not reflected in your symptoms, you could possibly be lulled into ignoring this risk to you health. Take care.

Post Edited (DBwithUC) : 3/8/2017 10:07:37 AM (GMT-7)

Posted 3/8/2017 5:09 PM (GMT 0)
I agree that the pattern of inflammation is odd. I think I had a virus in early January with fever and watery (but not bloody) D. My flares always include/start with blood, constipation, etc.... Personal friend who is a GI doc thought that pattern of inflammation was odd, too.

all stool tests came back negative for e.coli, H. Pylori, bacteria, etc. My intuition tells me that I had a stomach virus (That was going around my office and the world) and my body went into freak overdrive to attack it, as it is wont to do...and now I'm flaring. If I wasn't trying to get pregnant I would go on the Pred. I'm going to give it a few weeks until my Dr's appointment to see if I get worse, and have to cave, or if I continue to improve...

Looks like you successfully tapered off Pred while avoiding a flare...how long did the taper take?
Posted 3/8/2017 5:25 PM (GMT 0)
I kicked every flare without pred or steroids even though they were recommended initially. I was diagnosed with moderate inflammation and was able to kick it with SCD diet and 5-ASA meds.

This last flare was mild (urgency, blood and mucous but only 3 BM's) and I was unable to tolerate any therapeutic level of 5-ASA so had to manage with SCD diet, very low dose balsalaside (equivalent to 1.2G of 5-ASA) and probiotics/fish oil. It took 2 months to heal so it's doable, but does take longer (it would have likely been faster if I tolerated a therapeutic dose). Try lowering stress level and working less hours too if you can.

By the way, you should wait till you are in remission to conceive. The recommendation is to wait till your in remission for a good few months (I've read 6 months). Consult with your GI about this, but i believe getting pregnant with severe inflammation is risky.

Post Edited (Jane974) : 3/8/2017 10:59:15 AM (GMT-7)

Posted 3/9/2017 12:41 AM (GMT 0)
Pred is appropriate when your symptoms are simply awful and unbearable.
Posted 3/9/2017 2:39 AM (GMT 0)
Thanks John. Definitely not unbearable yet. Can work, sit through long winded meetings, workout lightly, and have an appetite. If any of those things change or are in jeopardy I'll go Pred.
Posted 3/9/2017 2:44 AM (GMT 0)
I have refused prednisone. I actually did for a long time when I was in my most recent flare up. They kept saying I needed to take it, but I had already decided that I would have surgery before getting involved in another course of prednisone. My body simply couldn't handle any more pred. I didn't even look like myself on it, and I hated the way I looked/felt. Sometimes you need it, but it doesn't sound like you're at that point. Hopefully things improve - severe sounds so serious. I would imagine in most cases, results that warrant the term "severe" are not easily managed with anything other than the strongest drugs, but anyone can be an outlyer from what's ordinary - it's just not that common.
Posted 3/9/2017 5:11 AM (GMT 0)
In your case, I would avoid the pred for now. But do you take mesalamine? That's the bottom of the "pyramid" so why not start there?

I would assume your GI suggested you wait to TTC until inflammation is under control?
Posted 3/9/2017 2:21 PM (GMT 0)
I take Lialda and rowasa. Will remain on those! And yes the trying to conceive question is a whole different thread! He advised me to wait. My goal is to get as healthy as possible for now and my period has been irregular anyhow so it's not a goal right now. Some things are out of our control in life - this disease and babies are 2 of them!
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