When it looked like our daughter was going to be "steroid-refractory" Crohn's case, my husband looked systematically at all the options, including those that are not mainstream medicine. I discussed this with him, and here are his recommendations in order.
0) You need to think about whether the dietary recommendations that you got from your doctor date to the period before you were diagnosed with Crohn's. If so, they may not apply now -- the doc may have been thinking that this was some type of common food allergy or food intolerance. If so, I don't think you need to follow those restrictions unless you have clear evidence that it helps your Crohn's. In effect, that was a prescription for a different disease.
00) I assume your doctor tested you for nutritional and vitamin deficiencies that are common in Crohn's, and that, if indicated, you are taking Vitamin D, iron pills, probably vitamin B (particularly B12 if you are anemic), and so on. if not - and particularly if you were not tested for these deficiencies -- you ought to take some just for anyway. A lot of those are absorbed in the ileum and inflammation of the small intestine greatly reduces your ability to absorb those out of your food. Further, if you are taking antacids with the steroids, that literally prevents the absorption of vitamin B, and you should take a balanced B vitamin in any case. (Stomach acid is necessary for absorbing vitamin B out of your food). Normally you have enough B stored in your liver to last a couple of years -- that's why docs don't automatically prescribe B with antacids -- but you need all the help you can get just now, and, as noted, you need B12 to make blood cells.
1) Remicade is obviously the first choice. If they're recommending Remicade, you should explore every avenue for getting that. But even that is not a sure cure. I believe that, of steroid-refractory Crohn's cases in adults, Remicade achieves remission in about 60% of cases. So even if you focus on getting access to that, start lining up other therapies in case it doesn't work for you.
2) If not Remicade, the obvious first thing to try is exclusive enteral nutrition (EEN). You can do this right now, and you'll know in a few days if it is helpful. All this means is, you drink Ensure (or Boost) as your sole source of nutrition. Even if you can't stand to stay on it long enough to put your Crohn's into remission, a) it will do you no harm, and b) even just a few days might get some short-term relief from symptoms, and could stabilize your weight.
Here's a description so that you can see this is for real. I can get more references if you need them.
http://www.ncbi.nlm.nih.gov/pubmed/23557272
So, did your doctor mention EEN as a possible therapy? Ours never did, we had to find out about it on our own. Exclusive enteral nutrition is rarely used in the US, but it is in fact the preferred, first-line therapy for pediatric Crohn's in Europe and Australia. It is as effective as steroids, or nearly, for inducing remission in pediatric Crohn's. The drawback is that it is almost impossible to stay on long-term as a "sip feed", that is, just by drinking the stuff during the day. (For little kids, they'll usually set them up with a nasogastric tube and a pump, and feed them through the tube at night.) It takes an iron will, for reasons that I can explain.
At one point, our daughter had almost complete malabsorption -- absorbing nothing out of her food -- and we didn't know what to do. We were feeding her 1600 calories a day, her weight was dropping like a stone, her poo smelled like vomit. Just absorbing nothing. Out of desperation, I sat down with her, and she did EEN for three straight days. It was incredibly effective. Her fevers stair-stepped down from >103 to <100 over three days, the gross malabsorption stopped, her stools became normal, and her weight stabilized. And by the third day I practically had to beat her to get her to drink the Ensure shakes. Even now, she will not drink anything chocolate, from that episode. She explained what the problem was. Your body thinks you've had enough calories, your brain thinks you are starving, and that disconnect, all day long, was apparently just really incredibly unpleasant. We could not stay on that long-term.
So, it takes a will of iron. Also will probably cost you $10/day for the Ensure shakes. Possibly less if you can get them on sale. But you can also use Carnation Instant Breakfast -- that is advertised as complete nutrition, and I think they can't say that if it isn't in the same class as Ensure/Boost -- things that have been shown to provide complete nutrition. Just make sure you drink enough, of whatever it is, to give you the daily calorie count that your doctor recommends. You can also drink water (of course), and I think that some regimens allow some limited fruit juice. But that's it.
Finally, you will read that you need to stay on this for weeks -- typically 8 weeks -- to achieve remission of the Crohn's. But what is almost never said is that, in many cases, you actually get pretty good relief of symptoms in a much shorter time period. It's just that if you go back to a regular diet after just a few days, your symptoms will return. But it can buy you some time. And you'll pretty much know in a few days whether this helps or not. And, as stated, unless you literally can't tolerate it, it's harmless.
In our case, we were clearly seeing results in 3 days. But as it turns out, it is fairly clear that intestinal bacteria were playing a major role in our daughters's Crohn's. So this may or may not apply to you.
Why is that relevant? The bacteria, I mean. Docs aren't completely sure why EEN works, but the most likely mechanism of action of this is that it suppresses bacteria in the gut. It's so easily absorbed in the upper small intestine that little is left to feed the bacteria in the rest of the gut. And for some people, the Crohn's symptoms appear to be driven by "molecular mimicry" (Google it), where antigens on certain gut bacteria are so close in structure to proteins in their body that their antibodies to those bacteria cross-react with their own tissues. It does not explain all cases but plausibly it explains some. I found this article to be a good introduction, and to highlight why a low starch diet can be incredibly helpful to some people (e.g., why the SCD works):
http://www.hindawi.com/journals/jir/2013/872632/
3) The Specific Carbohydrate Diet. That's what did the trick for us. Different foods, but the same mechanism of action as EEN. The entire point is to suppress the bacteria in the gut. This website (
http://www.breakingtheviciouscycle.info/) is pretty much all you need. And the diet is straightforward. No starch, no disaccharide sugar. So, no wheat, corn, rice, barley, ... potatoes, cane sugar, or milk (due to the lactose or milk sugar). It's just tough to do, because taking the starches out of the diet leaves a big calorie hole.
Even if you don't do this, I urge you to stop your current diet. If your problem is along the "molecular mimicry" lines outlined above, a high-starch grain-based diet is absolutely the worst thing. It greatly expands the pool of bacteria in your gut that you are trying to avoid. So -- listen up now -- if you got a lot worse after going on the Maker's Diet, you now have a good idea why. And you now should realize that you want to do the direct opposite, in terms of where you calories come from. The Maker's Diet has a lot going for it, in terms of getting a person to eat pure and wholesome food. I'm not knocking it. But ultimately, the diet is the creation of man, and it's not the least bit irreligious to say that, in this case, it's not the right thing.
The SCD says that if you get no relief of symptoms within a month, it's not working for you, and you can probably stop. So you know the timeframe on that one, too. We got relief of symptoms in four days, in a child not as sick as you, who clearly responded to dietary changes (via the EEN). But if might take a month to see improvement. But no more than that.
We can give you some help on how to do this if you need it. You sound ill enough that you might want to take the "induction" part of that diet seriously. Basically, that's eating soft foods that are allowed on the SCD. Otherwise, it allows a lot of things that might irritate your gut (e.g., raw vegetables) if you just jump right into it. The key parts are no starch and no disaccharide sugars. How you go about doing this is up to you. We ended up eating a lot of fruit, a lot of steamed vegetables, and meat and cheese. And I'm still hungry about half the time. Small price to pay.
4) Artemesia Absynthium (SedaCrohn). This showed extremely good results in two small double-blind placebo-controlled clinical trials in Germany.
http://www.ncbi.nlm.nih.gov/pubmed/17240130 The research article tells you exactly what they used (SedaCrohn, available on Amazon), and how much (six capsules a day). If you read the research article, they were seeing results after the first week, and that's how the SedaCrohn maker bills it -- one to three weeks. And yes, I gave this supplement (in reduced dose) to my daughter, and yes, I took it myself to test it. We started about a week before we did the SCD, and possibly, it was a reason that we got such an immediate response with the SCD. Anyway, a month's supply is about $30. The research looks sound. It appears to be very close to completely harmless, in the dose and time period specified in the research. (What I'm saying is that you could plausibly add this to any treatment mentioned so far other than Remicade).
The mechanism of action is completely unknown. If you take it, it's because those two trials say it worked, period. The authors attribute it to possible antiviral action, but that's not a mainstream explanation of Crohn's.
5) Low-dose naltrexone. Again, good but limited research suggesting a modest effect, and good self-reports. But it's all about finding whatever will work for you, so do not dismiss it due to low average impact. Apparently entirely harmless, except possibly for "vivid dreams". But you'd like your doctor's cooperation on this. Mechanism of action is via opioid recepters on immune cells in the body, but beyond that, I'm not clear on how it works. Just that there is a completely plausible mechanism. We did not try this for my daughter, but I bought some from an internet pharmacy, with the idea of grinding up the pills and make the "low dose" capsules myself if required. It comes in 50 mg tablets, you need about 5 mg for the "low dose". I bought what would be about a year's supply at the low dose for maybe $120. Here's a bit of research, again so you can see that this is for real.
http://www.ncbi.nlm.nih.gov/pubmed/24558033
6) All the usual TNF-alpha inhibitors. So, you've probably already learned that TNF-alpha is a key chemical to maintaining the inflammation in Crohn's, and that Remicade binds with that to "break the cycle" of inflammation. There are a lot of natural TNF-alpha inhibitors, and we tried them all, and as far as I can tell, they are harmless, but not nearly strong enough to do the job. A partial list would be: Bosewellia (frankincense), cucurmin, tart cherry juice. I'm sure folks here could add more.
Of those I looked at, the only one that looked like it had a ghost of a chance of being strong enough was Cat's Claw. Only because an extract of that did, in fact, improve arthritis pain in a controlled clinical trial. And because, in Peru, they use Cat's Claw tea for digestive illnesses. And in vitro, it was shown to be a potent inhibitor of TNF-alpha. But Cat's Claw contains a lot of compounds, some of which are likely pro-inflammatory. I ended up buying and using the extract what was used in the arthritis research, called Vinicol. I use it because I have sore knees, and it definitely and immediately works for me, for that, just as the research suggests. The only evidence that it might be effective in Crohn's is the fact that it's used for digestive issues by the natives where it grows. That one, you can get from any mainstream on-line pharmacy (e.g., drugstore.com) and it's cheap, like $12 for a month's supply.
http://www.ncbi.nlm.nih.gov/pubmed/11603848
7) Conclusion. And a couple of further recommendations.
I do research for a living. At this point, I should return to my comment above about " start lining up other therapies in case it doesn't work for you". As you can see, that's pretty much what I have been doing for the past couple of months, for my daughter. If steroids alone would work, great. But we kind of got caught short on the entire treatment path a couple of times, and I just didn't want to be cornered again. I wanted options. Because I thought that the options under mainstream health care were pretty poor. So I set about gathering the materials for every option that a) had some evidence basis, b) seemed low-risk, and c) I could get the materials for. This is what I came up with. I'm sure there are others out there. In fact, I found others, but mostly they either required a doctor's cooperation or looked too dangerous. I can list them if you get sufficiently desperate.
My point is, line up a bunch of options to try. And anything that's not dangerous is fair game, and don't let anybody persuade you otherwise. Mainstream medicine doesn't know jack about Crohn's -- not what causes it, certainly not how to cure it. Shoot, our doctor has our daughter on a medication that I can see in the scholarly literature is completely ineffective on Crohn's patient -- just on the off chance it might be helpful. In the end, all that mainstream health care can do for you, at best, is control your symptoms. So any way you can achieve that is good. Don't think for a minute that you are out of potentially effective options. You have not tried enough of them yet. And realize that all it takes is one -- just one thing that works for you. You just have to find it. Which is why you want to have a bunch lined up, ready to go.
In my opinion, you should be keeping a simple journal of your symptoms, and if you can be systematic about it, your food intake. Just temperature a couple of times a day, rate how you feel on a 1 - 10 scale, abdominal pain on a scale of 1 to 10, number of times you've pooed, number of times you've vomited. Just so you can have a hard record of what happened when, because you will forget, and this may be a long process. And so that when these options help, you'll have hard evidence. If you want to see how the pros do it, Google CDAI (Crohn's disease activity index). To see what self-reported symptoms doctors find most relevant.
That said, your doc is right. Remicade is certainly the best mainstream treatment you can get. If not that, I would at least go to a low-starch diet, immediately. The SCD worked for us, and just reading the rating of "Breaking the Vicious Cycle" on Amazon, we are clearly not the only ones. Whatever you do, good luck with it.
P.S. You might mention to your doctor the article in the January 2014 Journal of Pediatric Gastroenterology and Nutrition about the Specific Carbohydrate Diet. The author followed the cases of seven children with Crohn's who were on SCD and noted they all had considerable improvement.
