What’s Next?

The enemas will be the worst part, I assure you. Cold water on your inflamed colon feels very painful/comfortable in a weird way that's hard to describe. But with any type of scopes, I feel like the prep is always the worst. That's just me.

Also, I had CMV and it jacked me up pretty bad. It's REALLY something you want to get checked on ASAP. It can make you go permanently blind, it can damage your liver pretty heavily. The severe liver damaged I received from it made me have to wait quite a while to heal before I could start my infusion sessions. It was really all a mess. Plus the medication they gave me for it was 800$/bottle and NOT covered by my insurance (Valcyte).

I just really feel like the whole situation was handled improperly. The infectious disease partition of the hospital was REALLY worked up over it. I had no idea I had it. (I guess it can be considered an STD but isn't SPECIFICALLY an STD)?

Mind you, I was in emergency care at the moment. A team of doctors strolled in (kind of rude like?) and began asking me if I recently flew out of the country, how many people I slept with, how recently I slept with anyone (I'm engaged and I had been sick for MONTHS, hardly able to eat, let alone go around screwing anyone, I explained this) - They proceeded to scold me about where my fiance was from or if he was faithful (LOL WHAT?) and started grilling me about how I felt after I first slept with him, if I felt like I had the flu, etc etc. It was pretty ridiculous. So ridiculous that I told my doctor that I never wanted to see the head of their infectious disease team again. It was an older guy with no manners. Really pissed me off.

You can get CMV as a baby and it can be dormant within your system your ENTIRE life and you'd never know it. It usually creeps out when you're super immunosuppressed (like on steroids for a long time). It's not uncommon.

So, they just so happened to find it in a biopsy on one of my first scopes. Later on they found it had gotten into my blood. But it doesn't actually reach your blood until it's gotten kind of out of control, so they need to do biopsies to see if it's there at all, to begin with.

But, it's common. Many of my nurses came by to tell me they had it too. But again, the only need for caution with CMV is when you're on immunosuppressants, because it can go BALLISTIC if your immune system isn't around to beat it up.

With the treatment of CMV, it's one of those touchy things. You can potentially get some pills and it'll be gone within a couple of weeks, but my nurses had told me that some patients need to be treated with an IV for weeks to get it to go away. All depends on the person. You'll get some medication, they'll check periodically how you're responding to it and go from there. Kind of like with UC, LOL.

CMV cannot be cured, and will not go away. If you have it, you'll have it forever. The medication is just to pop it back down into dormancy. Once it goes dormant, you're fine.

And don't feel too bad, so many things sprung up from my UC. I wish it was my only issue. It started as UC, then severe liver damage, then CMV, then I had blown out veins in my feet/legs from the Prednisone over-use and my feet were always swollen and then they thought it was a heart issue and then I suddenly needed an emergency blood transfusion then I had to go see a neurologist then a cardiologist and blah blah...

The story goes on. And I'm only 27 years old. LOL. Good times. But UC usually blooms into a whole garden of issues for some people.

Cimzia is more common with Crohn's disease. I would assume it's similar to humira regarding side effects, but I am not certain. You can ask on the crohn's-forum on healingwell if you don't get an answer here on it.

I am not sure cimzia is approved for UC, so it would likely be a case of picking that because it's covered.

I personally prefer the pen injections versus the idea of infusions.. The pens allow for more independence. I will call my insurance company again, but I do recall one rep saying Remicade was considered experimental and not covered.
Unfortunately almost all IBD medications are so expensive that cash pay is not an option for me.

Is it pretty common for people to fail so many medications? I’ve tried Asacol, Lialda, sulfasalazine mercaptopurine, Imuran, and now Humira and all have failed. I’ve also built up resistance to Uceris and Prednsione now. Also tried VSL 3 with little results...

Yeah:
/www.entyviohcp.com/access-support

So to preface my insurance does cover the Humira and whatever doses necessary, however after 2 months of use I began to flare again. I do not have antibiodies built up and I do have a therapeutic level in my system... just stopped working... no infections either after several tests and a flex sig.

My insurance does not cove Remicade, Simponi, Entyvio, but it WILL cover Cimzia and I believe that’s why my doc is recommending it. But again I don’t want to use a medication just because it’s the only thing approve. Especially when my doctor has never once mentioned it and it seems just for Crohns.
I’m not totally opposed to using infusion drugs like Remicade, but since it’s not covered by insurance it’s not an option anyways.

As far as steroids go, I was hospitalized in December 2017 due to lack of responding to steroids... even after IV dosing of high steroids I was still very symptomatic with no improvement. Doctor said I had become steroid resistant. I achieved a very brief 2 month remission on Humira but started showing symptoms again in March.
My doctor has never prescribed multiple medications at once other than initial steroids, then weaning, then the drug of choice.
I have also never been on rectal meds or antibiotics as it’s said they wouldn’t help me, and they wouldn’t prescribe them...


I’ll definitely look into the affordability options y’all have posted as well. Perhaps the financial assistance will make it feasible.

Doesn’t it suck when we can’t afford the disease we have? *sigh*

Texas, I have been following your thread & wanted to make a couple of comments. Like IPoop mentioned, most drs add a second medication to the bios. When I was on Remicade & Humira I was also on Imuran. My gi said it helped boost the effects of medication & helped prevent antibodies. This is not something new so I am not understanding your dr's thinking. Before switching I would ask to be put on Imuran & make another go at Humira. Not everyone gets the desired results in 2 months.

about Cimzia, I suggest that you go to their website & read. No where on their site will you find that it is being used off label for UC or has been approved by the FDA for it. It was first approved for crohns, then later RA, AS, PA & one other condition was added some years later. I also checked at Drugs.com & could not find it being used off label. They give very comprehensive information on drugs being used off label. I am again not understanding your dr's ideas especially about this. Personally, I would not be comfortable agreeing to Cimzia knowing this information. Someone would have to show me written proof.

My other thought is since drs offices use CPT codes with insurance, have they put in the correct code on you? Sure its a wild guess, but a thought.

In the meantime, you may want to consider a 2nd opinion at UT Southwestern.