Making a decision - want some feedback please

Hi!

So I have UC or unspecified chrohns but primarily UC and just had a scope last week that confirmed I am moderately active and I have been on 20mg of prednisone for almost a year now. I am also taking Asacol HD and Uceris 9mg. I am somewhat managed but seem to be flaring with pain and some blood every 2 weeks or less. I also get very tired and fatigued; whereas I need to sleep for at least one of the weekend days. It's not so good these days. However, I am doing better, they cannot seem to ween me off the prednisone either without me flaring. I live in Florida and went to a doctor who believes that remicade or entyvio are the only way to treat really and he thinks it is ridiculous how much prednisone I'm on. However, I wanted him to talk to me also about some dietary changes, like seeing a nutritionist, pribiotics - which he did say I could try vsl - 3 but he just doesn't believe that any of those things will really help and he made me feel like the remicade and the entyvio are the only things that work...he makes it sound like everything else is just useless and I don't believe that's the case. Now, I do think that if I got thatttttt severe it could be the only way but I just feel functional and believe that I should be able to try other options without having to take those more risky drugs. I have read about Jordan Rubin who helped his Chrohns and Colitis when all else failed. What are your experiences? I am truly scared of both remicade and entyvio.

Entyvio runs the risk of PML

Remicade runs a huge cancer risk if you get it, you are much less able to fight it and anytime you get an infection or even a cold, you need antibiotics. Also, you can develop antibodies to it pretty quickly so if one day down the road you really need it, it might not be an option even. And who knows if it actually causes certain lymphomas and it does tax your liver pretty hard.

Why is it that these docs just push these hard drugs versus the nutritional component as well. I really believe that bowel rest is helpful as well as potentially other things but my doc just seems focused on one thing and that's getting me on a biologic. Am I the only one who thinks this is just pushy and maybe a tad unnecessary before discounting other types of therapies as well? When I asked him about a nutritionist, he said, he had one but she is no longer there but that it wouldn't really matter anyway. I just really don't agree with that. Maybe if he took a more multi-faceted approach, I would be more open to a biologics. I do have to make a decision soon but it's super scary. Please let me know your thoughts and feedback.

I appreciate it so much.

Sounds to me like you are trying to process the situation you are in. Maybe your colitis is more severe than you thought.

I thought my colitis wasn't very severe because it always used to be quite mild but the fact is that it has got worse.

Let me put it this way - beyond all of this, you will treat your disease somehow, right? Just try different stuff. Eventually if none of it's working you will end up with surgery anyway. My advice is to listen to the doctors though, what you have to remember is that they treat thousands of patients. I have no doubt that they are short sighted in some ways and would rather hard drugs over recommending more simple solutions, but at the end of the day we are living in 2017 and medical technology and intelligence will presumably develop much more across time but right now this is the medical wisdom available to us. Unless you find a better way for your own situation I would go with a more tried and tested approach taken by the medical community which has been researching and treating this disease based on the scientific findings rather than the hearsay of some people who have tried diets and found success. Don't trust anecdotal evidence too much especially not just one or two people.

I'm on Remicade now and what scares me more is the methotrexate or the 6mp that my gastro wanted to put me on. I don't argue that immunosuppressant would help prevent antibodies from forming to the Remicade, but I like my liver.

I'm also currently trying out AIP Paleo. I've been on it for 5 days and have noticed that my BMs seem to be more formed, I don't have food hangovers and my frequency has decreased from ~6 per day to 4 per day. For the first 3.5 days I went on the SCD intro diet (didn't have any eggs though as AIP Paleo eliminates eggs at least initially). I realize 5 days isn't a large sample size, so I just hope the trend continues and I continue to improve.

I've seen several gastroenterologists and they all seem to prefer Entyvio to Remicade, because it's more specific/less systemic. So if you're just terrified of a biologic, then maybe consider Entyvio? If you're really opposed, then there is always surgery. I think it's definitely it's one of those between a rock and a hard place situations, but you just have to choose which you would prefer.

If you decide to go the diet route, then I've found that it really takes a full commitment--no cheating. There are numerous diets out there, AIP Paleo being one of them. Definitely read up before you try out anything.

At the end of the day, I think indecision creates more problems than decision. You gotta try something. There have been studies that show Entyvio and Remicade is efficacious for folks with IBD, but there are also studies that show diet modification, specifically SCD, can be beneficial for folks too. Know that the docs are only going to recommend medicines and if you do anything diet related, then you pretty much gotta figure it out yourself. A functional medicine doctor could be useful in helping you out there, but at some point you just gotta do it. Lots of good free information online about AIP Paleo.

I think everyone with UC shares your concerns and wants to ideally minimize the amount of strong medication they take. I think it depends on the risk/benefit and think there are risks either way (not getting on a good maintenance medication as well as getting on remicade).

Since your symptoms are relatively well managed right now, you could go full force into the diet, probotics and supplements for 1-2 months and keep a journal of your symptoms. Regarding diet, I agree with others to try something that is at least somewhat evidence-based, such as the IBD-AID diet from U Mass or SCD. They are both very similar actually. They have done research on both without a control group though.

Regarding probiotics, VSL 3 seems to have the best efficacy for UC combined with meds. The dose they use in research studies of VSL 3 is about 4 sachets per day. I would start very slowly (like 1/2 sachet per day) for the first few days and see if you react to it.

I had 12 years of remission on SCD diet, probiotics and intermittent use of mesalamine and I started off with moderate inflammation when I was diagnosed over 15 years ago. I changed my diet within the first month of diagnosis and never went back. I will never know though if it was luck or diet that worked for so long.

There are many members here who successfully maintain remission with a maintenance oral mesalamine and rectal meds taken as needed. Unfortunately I am intolerant to the milder mesalamine meds but am doing quite well by vigilantly monitoring my diet via a food diary and taking selected supplements that work for me as described in my signature.

By far, the most dangerous medication for UC is prednisone over long term use as it is guaranteed to give you one or more of the following: Osteoporosis, type ii diabetes, glaucoma or other nasties. Not a matter of if, but rather a matter of when. After a full year, you are in the long term steroid use club, and you need to find and expedited way to get off of pred safely. Have you had a recent colonoscopy, flexible-sigmoidoscopy, CRP, or fecal calprotectin stool test done to assess your current inflammation levels?

It sounds like you have a severe case of UC and I would agree with your doctor that biologics are best.

Samantha193 said...
Entyvio runs the risk of PML

Entyvio has had zero incidence of PML, it was developed specifically to avoid the PML complications of earlier drugs within it's class. Entyvio is a gut-specific immunosuppressant (rather than body-wide) and a good option.

Samantha193 said...
Remicade runs a huge cancer risk if you get it, you are much less able to fight it and anytime you get an infection or even a cold, you need antibiotics. Also, you can develop antibodies to it pretty quickly so if one day down the road you really need it, it might not be an option even. And who knows if it actually causes certain lymphomas and it does tax your liver pretty hard.

You really need to look at the actual risks versus benefits of using biologics. You will find that the odds of the side effects are actually quite low once you take a deeper dive into it. Everyone is worried at first as words like cancer are darn scary, and it's only human nature to assume that the worst case scenario will happen to us. I found it comforting to look at the odds and it helped me in my decision. about 65% of people see an improvement within their UC symptoms from remicade. The risks are less than 1 percent.

The odds of getting cancer while on Remicade are 4 in 10,000 (or 0.04 percent). The odds of the average, healthy person on the street getting cancer are 2 in 10,000 (or 0.02 percent). Of those who get cancer from remicade, 66 percent are able to put it into remission. So, we're not at all talking about a HUGE cancer risk, but rather a statistically small odds, and very unlikely your or I will get it. And having uncontrolled UC inflammation for a year actually has higher cancer risks than any biologic does.

It's never a good idea to get antibiotics for a cold, as it will not do anything.

Antibody formation isn't all that common. I've been on remicade for over 3 years now and have no trace of antibodies within my body. The best practice is to start remicade concurrently with an immunomodulator (Imuran/azathioprine or 6MP), which I did, to reduce the odds of antibodies. Most do not get antibodes, only a few do. Antibodies in low concentrations can be handled by increasing the remicade dose, bringing the patient back into response. In cases of strong antibody formation, then another med, like Humira is tried and there's no guarantee that antibodies will form for that new med (often they do not). A few get antibodies immediately despite following best practices, some never get antibodies even without immunomodular use, and it all varies.

The Crohn's and Colitis Foundation of America is the source for these statistics, and has some great risk versus benefits discussions. I'd strongly suggest you read and/or watch the presentations, as it appears you have some misconceptions about it, and perhaps some undue fear as a result:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Remicade is the only UC medication to ever put my UC into remission, and I've yet to experience a side effect.