*If you don’t want to read all 1000 words, just read the green!*
I spoke to my gastroenterologist on the phone over the weekend. I don’t know when his official on-call hours are; he is perpetually on call for me because I have his cell phone number. (It’s not sketchy – I know that other patients have his number as well, and it is simply way more convenient for both of us if we have a direct line.) We talked about probiotics and 6MP – the main things that I had brought up in my long email to him, where I explained my detective work.
Since I felt fairly certain that my symptoms are heavily influenced by bacteria and it seems like the more good bacteria, the better, I asked him about VSL#3, specifically. VSL#3 is a very potent probiotic that has been studied in clinical trials for both ulcerative colitis and pouchitis (inflammation in the j-pouch – the internal pouch made to act like a colon when one’s colon is removed). The first time I heard about VSL#3 was actually years ago, by my previous gastroenterologist. He was not particularly recommending it, but letting me know that it was an option. I don’t really remember our conversation, but probably he said that it would not replace the drugs I was taking, and here is the little we know about it. At this time, the drugs were doing their job for the most part, so I probably figured I wouldn’t bother with this probiotic thing, considering it would be extra, might not even make a difference, and was expensive. I was content with continuing at the status quo.
If he brought VSL#3 to the table, over the years it became buried under a million other plates – some with healthy meals, some with questionable meals – but I’ve been methodically clearing the table and being more deliberate with the plates I do add, and I have unearthed it! (I love metaphors, although I’m not sure this is one of my better ones.)
The regular strength dose of VSL#3 is 450 billion cfu (culture-forming units) of bacteria, and there is also a double strength dose that can be prescribed by a doctor. A patient might even take two of the double strength doses a day, equalling 1.8 trillion cfu’s of bacteria! In contrast, I have been taking just 15 billion cfu per day (which is 3 capsules of my probiotic).
In our conversation this weekend, my gastroenterologist said that he felt that probiotics are a bit of a “shot in the dark,” as we’re just beginning to understand how they work, but he acknowledged that the studies for VSL #3 look positive. At the very least, it’s unlikely it would cause any harm, and it may help. He wrote a prescription for it, but unfortunately my insurance does not cover it, and $600 is a bit too much to pay out of pocket, especially if it’s something that I want to stay on. I did order the OTC version (under $100), which although is not as potent as the prescription, still decimates the amount of probiotics I have been taking.
Because I need to wait for that to be delivered and wanted to start right away with increased probiotics, I got a probiotic that was available at Whole Foods and started it two days ago. The brand is RenewLife, and the particular probiotic I am using is called Ultimate Flora Super Critical 200 Billion. I chose this one
because I like adjectives because I had read positive testimonials about this and other RenewLife probiotics on a couple UC forums. I’ve been taking one packet a day (like VSL#3, it comes in a powdered form), and already, my symptoms have improved. (The amount of blood in my stools has significantly decreased, and I’m not having diarrhea anymore.) Isn’t that amazing? And I CALLED IT.
Part II of my conversation with my gastroenterologist was regarding 6-MP, the immune system-suppressing drug that I started at the beginning of September and quickly stopped when I felt better from the antibiotics. My argument against going back on 6MP was that I’m 90% sure it was the antibiotics – not the 6MP – that helped me recently, and I’d like to see how I do with stronger probiotics before I go back on this drug. My gastroenterologist’s argument was that I’ve been sick for a long time, so we need to maintain a sense of urgency to overcome this flare, and we should throw the kitchen sink at it. Once I’ve been stable for 6 months or so, then we can try reducing the 6MP.
This is totally reasonable. But I like my plan even better. And, two days after this conversation, which means two days of my new probiotic and no 6MP, it appears my plan has proven effective.
I absolutely love my gastroenterologist; he is very open, and his sense of reason appeals to my sense of reason, but even though I’m working with the most competent and awesome doctor I could possibly find, I still can find reason to contest his recommendations. Just because I don’t need to fight the worse-case scenario right now doesn’t mean I’m in agreement with my doctor on everything else. (As Celine Dion says, my heart will go on…) I’m still pushing for what I believe is best for my health, based on the stores of knowledge and opinions that I’ve gained during this flare. But the push at this point is a lot more relaxed than when I was in the hospital, thank goodness. It’s not as extreme a situation as then, when both sides felt even stronger about their opinions (doctors for surgery, and me against), and no one was apologizing for being headstrong; in this case, there is less pressure and more conversation and consideration. I actually really enjoy this. That’s probably partly because I’m proving myself correct, but also because this gastroenterologist is more in line with my way of thinking and it’s easier to have a constructive back-and-forth with him.
So…I’m going to keep up with my probiotics and will leave 6MP on the table, but a few seats over. And in other news, I saw my functional medicine doctor the other day, but I’ll leave a summary of that appointment for my next post!