Starting Entyvio or Remicade soon -- Talk me down please!

Diagnosed with pancolitis last April -- 19 day hospital stay (1st hospital did nothing so I had to switch to another). Have just started my fourth round of steroids -- feel pretty good while on the high doses, but start flaring symptoms again when tapers start. Just had another sigmoidoscopy which shows inflammation (haven't seen the report yet, so don't know the level of severity). Doc says my colon isn't the worst he's seen, but if we don't stop my flaring, I'm probably on a course to lose my colon. Of course I don't want that to happen.

He wants to put me on Entyvio first, but if insurance says no then it will be remicade. He says that I am "unable to tolerate azathioprine therapy as she is a non metabolizer" but did start me on methotrexate today (said that was the only one that would work for me).

I'm so ready to stop feeling so badly, but of course now i'm having second thoughts, such as, maybe we didn't try enough with the Apriso (I take 4 per day). Maybe I could go with a stronger dose or a different mesalamine? Honestly, I don't feel like it's ever helped that much as I can't say I've ever felt really good since being diagnosed, and only the steroids seem to give me some sort of relief for a few days. I've used Canasa suppositories off and on and they help a lot by taking away the bleeding. But maybe we should have tried the enemas or foam?

The diarrhea comes and goes, sometimes as little as 2 per day (partly formed stools), sometimes up to 6, but the worst is the urgency, cramping and horrible pains when the bowels are actually moving, to the point of being VERY close to childbirth pains. I'm tired all the time and have no energy and am depressed. Becoming house bound because I fear getting the urge and not being able to hold it (sometimes barely make it from the couch to the bathroom) and the strain of being around people and carrying on a conversation just takes too much energy. I also keep losing weight and am down to around 100. I'm honestly afraid to weigh myself right now. At the dr. today I weighed 103 and that was with my heavy boots on and a sweater. I go to the grocery store or Costco and come home exhausted and am done for the rest of the day. My house is a mess because I have no energy to clean it and honestly just don't care.

I've been gluten and dairy free since summer. Started the AIP protocol (which is basically only meats and veggies and some fruits, while also paying attention to SCD and low fodmaps guidelines. Drink homemade bone broth every day. I honestly feel like I've given my all to trying to heal through diet and it hasn't helped all that much. But maybe I didn't give it long enough?

Sorry for the long post and I am truly miserable and just want to feel better. And not worry that I didn't try everything else before I ended up with the "big guns" as my Doc likes to call the biologics.

To me it sounds reasonable to start a biologic. Remicade or Entyvio, whichever your insurance will cover first and you and your doctor agree on.

If you spent 19 days in the hospital, I would think your case is serious enough to want to start a biologic. I guess you could try a suppository first.

Thanks for the replies. The doctor mentioned that in even another couple of months my colon might be in such bad shape that I'd be headed to surgery. I should mention I guess that I had a bowel resection (8 inches of colon removed) in 2014 after about 5 years of diverticulitis, so the gut has been through a lot. Haven't had any diverticular disease or symptoms since then. But then the UC hit with a vengeance. I've yet to see remission except of a sort, when on steroids.

Canasa suppositories stop the blood in the stool and the frequency, but not the pain or urgency.

You have active disease in your sigmoid colon with sections/spots of multiple abscesses. It is chronic meaning it has been there for awhile and it will continue unless something puts it in remission. The cells are not precancerous.

These types of findings can lead to infections and ulcers. I had a similar finding. I tried to not take Remicade or any other biologic. I developed sepsis 3 times....finally went on Remicade, developed a rectovagina abscess and then a Rectovagina fistula, (which changed my diagnosis to Crohns)developed a soft tissue stricture in my sigmoid, and now have a colostomy.

If I were you I would run to the biologic. I take methotrexate and have taken Remicade for the last 18 months. When I started taking Remicade my abscesses had changed to infections and then ulcers that went thru the walls of my colon. My colon looked like a sieve. The Remicade healed it except for 8 inches in my sigmoid. There was so much damage. I developed soft tissue stricture. The methotrexate keeps me from making antibodies to the Remicade.

I am working on getting my fistulas repaired. Once that happens we will see about reconnecting my colon. I frequently wonder if things would be different if I had started Remicade sooner.

Good luck.

Clo

Sure, here's a translation for you:

colon, sigmoid colon, biopsy:
--chronic active colitis with cryptitis and crypt abscesses

This part of the report mentions your rectum and the sigmoid colon both on the left-side of your large intestine. This is a proctosigmoiditis where the inflammation was seen. Chronic active colitis is a common finding with UC patients.

In a normal large intestine the surface is like waves on the ocean, filled with ripples with high and low points. The low points are known as crypts in medical jargon. In UC diagnosis, the crypt is a point of interest in diagnosing patients as our always look abnormal. Our crypts are often full of junk that doesn't belong there: often white blood cells and other immune cells and that's known as a crypt abscess. You had crypt abscesses and that's typical and normal for a UC patient.

The crypts have pockets and your biopsies showed signs of inflammation there, known as cryptitis, and that's also a common finding for UC patients.


-- no evidence of dysplasia
No signs of pre-cancerous cells (aka dyspasia) and that's a darn good thing.a

Guategirl: Here's hoping we both get results with entyvio. I'm still waiting to see if it will be approved because it's my dr.'s first choice, but if it doesn't work out, then he'll start me on remicade. I hope to hear this week.

I saw your other post about you going off the remicade because of $$$$, and that's my big fear, that they have all these support programs right now, but if those stop, how are we supposed to maintain our health without losing our life savings/be in the poor house? The hubby says don't worry about it now, it's time to focus on getting better, so I am. But those thoughts still linger in the back of my mind. I wish the wait time on seeing improvement wasn't so long for these drugs. For now, the prednisone has kicked in and it's so nice to have some darn energy again. I know steroids are horrible on the body with some dangerous side effects, but dang, they make me feel better at the high doses!

That is very frustrating. I too have had trouble with drugs I can't afford. I had a resection in 2005 for the same thing, only mine ruptured. I ended up with an ileostomy for two months. I won't lie, it was kind of rough at first, but I also went from being fine to getting extremely sick with peritonitis and surgery and a bag I never dreamed I would have to wear. I didn't have UC back then nor had I heard of it. It was a bit hard to get in the groove of changing my bag.

But, once I found what worked, it was easy peasy. I would go pee, empy the bag at the same time, wipe, and reclip it. It wasn't bad at all. Honestly, I would look into it if you are that sick and your colon is that bad.

FlowersGal:
I know how you feel about anxiety about the $$$ of all this. I can't go there though. I need to live for today and if I have provisions and money to pay for my insurance and deductible this year, I focus on that. One day at a time.

Honestly, my prayer is that by the time I'm old and can no longer afford my my insurance they'll be a CURE!!

$4000 per dose of Entyvio? That's amazing. My hospital charges my isurance $12,000 (actually $23k, minus a $11k discount!) Makes my stomach take a leap every time I see the bill.

FlowersGal:
I was actually on Remicade for 5 years and felt amazing. Super, super well. Never had any side effects. Full actual remission. It was as as if I was cured. I felt so good that when we were short on funds and couldn't afford our annual deductible I went off it at the end of 2015. BIG MISTAKE! BIG! HUGE! I was only well for 3 months then started flaring - badly. When I went back on it I was never able to achieve remission, and eventually developed pneumonia. My Dr even doubled the dose and frequency.

So that's why I am now on Entyvio.

It's been 8 weeks since my first infusion, i've had 3 so far. This week I can finally say that I'm starting to turn a corner!! Praise God! Have actually had 2 days in a row without an accident, and I can feel that I have a bit more control. Don't have mucous or blood. I had two good days and 5 bad days last week, so we'll see.

I'm also glad to see that I keep feeling well despite tapering the prednisone.

My main problem is that there is no Entyvio where I live (Guatemala), and I have to travel to Miami every 8 weeks for my infusion.

I'm sorry to hear about your insurance. $2000 co pay is insane. What's that? $ 12000 a year?

If Remicade is the only solution your insurance can offer, don't be afraid of it.

All the best to you!!