Shift in IBD treatment?

Just had a 3 month follow up with my GI. She brought up a "shift" in the medical community regarding the treatment of IBD. She wants me to have another colonoscopy to check for mucosal healing. I had one a year ago February. At that time, I was told I wouldn't need another one for 8 years. She says that there is now discussion of trying to induce deep clinical remission, ensuring complete mucosal healing. She says that the GI community is becoming more aggressive with medical therapies and that it is becoming more apparent that our symptoms don't necessarily correlate with our level of healing. She said that if there is not mucosal healing, we should increase the level of meds. At a minimum, reintroducing enemas (which I really don't mind doing) and possibly going on biologics.

I really didn't know how to take this. I feel as though I'm in at least 95% remission, if not better. The only thing I've been dealing with is an abscess and fistula problem that hopefully is resolved. I have occasional gas pains and cramping but it never lasts long and I don't have any D/blood/mucus. Nausea every once and a while but most days and weeks I feel fine.

I refused the colonoscopy for now, mostly because I have an open wound in my ash from the fistula surgery. She agreed that we should wait till that heals up. I have no idea what to do. I don't want to rock the boat when I am not flaring. I would have no problem going on a biologic if my symptoms were uncontrolled or if I developed more fistula issues, but I'm feeling pretty good...why mess with things?

My opinion...don't rock the boat. My last colonoscopy put me in a flare that took a good while to calm down. My GI has been pushing for a scope last year and I fought back. I know I will have to give in at some point but I resent it. It may be true that sometimes symptoms and healing may not correlate-- but I wonder what percentage that actually is.

I would have no problem with the enema (I do them every night myself) as they are safe low level meds. Personally I would be very very hesitant to go on a biologic if I was feeling well.

Just my humble opinion.
B

notsosicklygirl said...
I like the idea of complete healing but I feel like people would burn through the options really quickly if they went for that. I actually had really good remission with the lower level drugs in the beginning. I was able to maintain on Asacol for a year or two and my scope looked "normal" during that time. I am not sure if it was perfect, but regardless, I was a non-responder to biologics, so you see where I am going. If we were going for perfect, I might have ended up having surgery years ago - which might have been for the best but I definitely wasn't ready at that time.

Surgery can't be a picnic. Stinks that your disease got to that point. Is there evidence that we actually "burn through" our treatment options?

Well the theory your GI is telling you is very accurate and has been standard practice for a while; if there is no endoscopic and histologic remission, more needs to be done. While more scopes suck for you on those 2 days they take up, they are better for your short and long term health.

notsosicklygirl said...
I like the idea of complete healing but I feel like people would burn through the options really quickly if they went for that.

Yes, people would be escalating meds faster but when patients are in a deeper remission with mucosal healing they tend to stay in remission longer and wont flare as quickly
the meds they are on will allow them to stay healthy because its easier to treat flares proactively. it also reduces the risk of cancer which is nice

"the scope thing stinks cuz its a cant live with them and cant live without them type of thing"

I am a big believer in proactive versus reactive medicine

I have to have them every 1-2 years now. My doc said once you have UC for X number of years your chance of colon cancer increases. Is everyone else doing the same thing? I hate them so much. Though the last time around was the easiest for me. My doc gave me an anti-nausea medicine and now they have figured out my anesthesia so I don't feel drugged for 24 hours after. The last time when I was still under my doc was telling the nurse I didn't need a scope for 2 years and she said I said(in my sleep)..."yeah two years!!"...haha. Even in my sleep I hate them. Ugh!

They've been going on about 'deep mucosal healing' for years, but as the meds haven't changed it's largely a load of blather, imo. Either the meds work or they don't work - if they don't work, then your nice idea of mucosal healing flies out of the window. There aren't that many meds to try either.

If it ain't broke then don't fix it

First they said you didn't need colonoscopy for another 8 years, now they want one after one year. Reintroducing enemas sounds OK but it's possible that they will put you on an expensive biologic, for “mucosal healing”. If it were me I would run out of that GI's office screaming to get a 2nd opinion. And a new GI.

Your Lialda and the Rowasa that you take as needed are anti-inflammatory mesalamines that are proven to help prevent cancer. OTOH biologics can have serious side effects. Maybe they are worth the risk if nothing else keeps your symptoms in check, but your symptoms are in check with 95 percent remission.

You need to decide if it is worth the risk to cripple your immune system, possible cancer or TB etc., from those meds for the goal of “mucosal healing”. I agree with NCOT as far as that goes.

Once you are on those big gun biologics there is no coming back. Hopefully you will be able to stay on your current meds permanently, but if someday they cease working then you will always have the option of jumping to those expensive biologics. In the meantime imo it's best to leave well enough alone.

Sometimes dosage or frequency can be reduced so if a patient is getting 10mg/kg of remicade maybe they can reduce it a bit

What if it doesn't work for you but you're in 90% remission already and you get stuck taking it because *maybe* it's helping? That seems like a crappy way to live. On a drug that costs 10k a month and inconvenience because you can't stop it and you don't even know whether it's working...

I know there are those who will remain unconvinced, but if a doctor prescribes a biologic, they don't get a cut of it. They're not like Sears sales associates earning a commission for selling a refrigerator. Often times, in fact, they give up part of their day (or week) to fight insurance companies that don't want to cover an expensive treatment even if it's the best option for the patient. My significant other is a physician who does that all the time.

That doesn't mean OP should automatically take whatever is suggested, of course. That's a personal decision that every patient should make in collaboration with their doctors, but it's also important that you have a doctor you trust, whose role in your treatment you understand.

Not saying all doctors do....but it was eye opening when a member here posted about a website called dollars for doctors. It showed how much money pharma companies paid certain doctors. The info was truly shocking...a Dr. I know in town was getting like 100K for the year (it was a cardiologist...not a GI)

Again not indicating that there aren't many caring wonderful docs out there...just saying in the name of transparency.

Edit--Just for fun I looked up that same Dr since it has been a long while...he is now up to 195K, wow!

Post Edited (hateuc) : 1/12/2016 9:27:44 PM (GMT-7)

Louiseluck said...

notsosicklygirl said...
On a drug that costs 10k a month

Uniform Charlie said...
I know the practice was just taken over by a big conglomerate. Probably being pushed to increase "sales." Although I trust my GI, she has a boss to answer to, just like the rest of us.

No further comment.

This is a really unhealthy attitude. You cannot go around assuming your docs at prescribing things for monetary gain. Yes there are some docs that might be bad apples ( cough cough dr oz) but, they have a moral and legal obligation to "do no harm"
You have to have a healthy balance of skepticism and being overly cautious.
The op clearly states that he trusts his doc. The docs that are out for money usually give off a sketchy vibe.

And to all those who think doc prescribe meds that pay them not true. It's illegal and dishonest ... My GI made more than 30k from humira and prescribed remicade to me