Please Help Me Understand

Colonscopy on Tuesday showed mild active colitis in rectum and sigmoid. Removed polyp, sent out for labs. Everywhere else was clear according to the report they sent home with me after the scope. They took biopsies throughout. Received call from Doctor just now. Pathology reports came in. I have Pan Colitis. Said it is throughout my colon. I said then why did the doctor say my colon was only active in the sigmoid and rectum but clear everywhere else. He said the bioposies are showing active colitis everywhere. He said we need to start Entyvio and to let him know when I am ready. I said I am not ready and will continue doing what I am doing. Reminded him he just put me on Lialda and I'm taking that. He said Lialda doesn't work for Pan Colitis and that I need Entyvio. I said I've always had Pan colitis and I've always taken Asacol until last year. He said those treatments don't work for Pan Colitis. WHAT THE FRICK??? Then why did he put me on Lialda two weeks ago when he already knew I HAD Pan Colitis based on my colonscopy last June, which for the record, I was diagnosed with Pan Colitis back in the early 2000's and was on Asacol this entire time (until October 2016 and except for the 18 months I was off it while in remission). Clearly it worked because for the majority of that time, I was in remission. Until last year, my UC was always mild. Then after coming off my raw vegan diet and going back to the Standard American Diet (i.e. eating lots of bad food, mostly gluten), I had a flare up from hell and went back on Asacol and enemas and prednisone Fall of 2014. It never really cleared up and my colonoscopy in June 2016 showed it moderate to severe. Now, my symptoms are gone, my inflammation numbers are back to normal and my UC is back to being mild (yes, I understand it can flare up again and get worse, but for now it is not.)

I am so confused. Ever hear Lialda/Mesalamine drugs dont' work for Pan Colitis? Anyone else with Pan Colitis who is taking Lialda or non-biologic meds to treat? If so, what are you taking. I'm also taking Imuran along with Lialda and just about done with prednisone.

Colitis polyp is considered hyperplasic....meaning related to inflammation.

You need to get a copy of your biopsies report and post it here.

Visual clear doesnt mean there isnt inflammation, necessarily.

What about the cecum and terminal ileum?

q

Nope...it is a treatment, but you could switch to Pentasa which releases higher in the small intestine as does Apriso. The others are released in the terminal ileum and start dispurse out medication from yhere and throughout the colon.

You really should be back on rowasa.

q

Lialda and other mesalamine drugs can work but usually just for mild cases of pancolitis. For those with pancolitis and more moderate or severe inflammation it is preferred to have them on much stronger medications like immunomodulators or biologics as it better matches their disease severity. Specialists are often pretty gruff and are not the best at explaining things clearly.

You had active inflammation visible during the scope, so your current treatment isn't enough. Time to switch things around: increase meds and doses. Try the lialda and rowasa first and see if there is an improvement. However, don't hesitate in trying stronger meds if they are needed.

The biopsies showed inflammation higher up, that was not visible during the scope. It's microscopic inflammation and happens. An inflammatory polyp is caused due to inflammation. As inflammation heals polyps can form. Those polyps fall off in time, are non-cancerous, and nothing at all to worry about.

If you and this doctor don't see eye to eye then perhaps another is best.

If, as you write, you have made a big improvement with Lialda + Imuran & a careful diet, I don't understand why this doc is still pushing Entyvio! But don't let him discourage you from seeking a more compatible, knowledgeable gastro: there are some out there! If U. of MI Emergency helped you, look online to see who is in the regular Gastro Dept. there dealing with IBD & taking your insurance. Forget about supplements/naturalists for the time being. Get copies of your scope + biopsies reports to take to further consults. It sounds like your present doc doesn't communicate what you need to know because he's rigid & you would do better with a more flexible personality. Also, if the present doc has a large caseload for office visits, he won't want to take more time with you to discuss supplements-- pretty typical of very busy docs & a reason why they get testy when patients bring them up. / Old Hat (36 yrs with left-sided UC; presently in remission taking brandname Colazal) *** P.S. From personal experience I know it is possible to "top-out" of mesalamine enemas, whereby they not only stop relieving inflammation, but make it worse! So try to keep an open mind about them-- it's the fickle nature of UC that causes these setbacks.

Post Edited (Old Hat) : 4/8/2017 1:33:05 PM (GMT-6)

There's always surgery if you don't "trust" drugs - if it gets to that point. In the end, I felt like prednisone was the worst of all the drugs.

Old Hat, that's the funny thing. They didn't put me on Imuran until October. Up until that point, I was taking Asacol, and they put me on Prednisone during that hospital at the same time they started the Remicade. When they put me on Imuran, they took me off Asacol. When they took me off the Remicade (last infusion was November), the only meds I was taking was Imuran. In January when it was time for my Remicade infusion, they tried pushing Entyvio down my throat as an alternative and using the scare tactic - "You'll lose your colon". I refused and said I did it your way for 5 months, now it's time to try it my way. I mean, I could barely walk at this point or open a bottle because of the joint pain. I most certainly did not want to take another drug that could do God only knows what to my body. It is all so frustrating. It wasn't until the end of January they put me back on Prednisone. Like I said, I should have waited it out, but I freaked out and was afraid I was going to FLARE again because I had two days of a little bit of blood and mucus. As we know, going from a little to a lot can happen pretty fast and I didn't want to go into another full blown flare. It wasn't unitl 2 weeks ago that I started Lialda after refusing Entyvio AGAIN!!

On the bright side, I got my FCP results back yesterday. Are you sitting down? 41, which is in the NORMAL range. My CRP is also normal....and that's while weaning off prednisone. Fingers crossed. I am still waiting for my pathology report to be uploaded to my portal so I can read them for myself.

I'm hoping to find a GI doc like you recommend. They are hard to find, especially at a teaching hospital. LOL.

Post Edited (Trixy's Got Butt Trouble) : 4/10/2017 5:30:11 PM (GMT-6)

iPoop said...
Awesome on the FCP score! Being normal never felt so good!

LOL, I know. So, if all my inflammatory markers are showing normal, had I not had that colonscopy that showed mild inflammation, I would consider myself in remission right now. How 'bout them apples.

according to some rules, you will always have some sort of designation according to your original DX - which i think is bogus -

if it were me, i wouldn't spend much time worrying about whether it is considered by some to be severe or not - treat the symptoms -

I think its bogus too. I'm tired of treating the symptoms tho because they seem to be moving targets....I want to treat the root cause, but wouldn't we all. I know most on here are not in agreement with me, but everything I have done, researched and applied all point to nutrition and diet. I'm finally at the point where my health outweighs the joys of eating something that may taste divine for a moment but is detrimental to my health in the long run. Those few minutes are heaven, but the days, weeks and even months following can be pure hell.

I wish they'd focus more on the changes of the colon through diet and nutrition and on an individual basis since not diet is a "one size fits all".

My problem is I love food and have such an addictive personality. One bite and I could go back to eating crapppy for days weeks or months until I start to feel bad again. I just can't do that to-yo cautious dieting anymore. Seems recovery takes longer and longer each time I stray.