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What does remicade preclude?



Hello all-

My wife went to the local clinic about 8 weeks ago for severe abdominal pain, which we orig thought was related to a January miscarriage. OB sent her home saying it was nothing to worry about.

Week later, pain had become ridiculous, we went to Urgent Care. Did CT scan (which iwe did not see at that time, just a GP). We're given scrips for pain and anti-biotic, told to come back and see a GI doc.

Week later, went in to see GI doc. Talked with him for about a hour and a half, he thought it was infectious colitis, and that we should finish out the antibiotics. Toward the end of the conversation I said "have you looked at the CT scan?" He pulled it up. It was plain as day that 80% of the colon was inflamed (from terminal ileum, continuing toward rectum, but stopping short by like a foot), with about a pencil's worth of room in the middle.

He said: we need a colonoscopy right away. Next day, went in for the scope. Nasty pictures of badly inflamed colon, ulcers. Couldn't get into terminal ileum for fear of damaging the colon. Doc diagnosed Crohn's. She was admitted and put on IV steroids and pain meds.

Left hospital a week later. Doc prescribed 40mg of prednisone and mesalmine.

Went to a different GI doc for 2nd opinion. He does a barium x-ray and tells s the terminal ileum is also inflamed (no surprise here) but also tells us that the Prometheus test came back with negatives for all 7 tests (the prometheus test was done at the previous doc, but no one mentioned it to us). So that's a little odd.

So I said screw this, we're going to Mayo. We live 4 hours from there and our insurance will cover it.

They're 90% certain they want to do remicade tomorrow.

So, finally, my question: what does remicade preclude? I'm greatly encouraged by everything I hear about low doee naltrexone, but given the current rather nasty state of her colon, it seem remicade may be prudent at this moment. I'm also very interested in SCD and the like (but of course no doctor is).

I've got to hop on the phone, but I can assure you, I'll be posting more, as this seems to be the only site both a) not affiliated with drug companies and b) extremely current.

Remicade doesn't preclude anything really. It is an immunosuppressant, she needs to be more careful if she does get sick to take care of herself and any lingering cough or cold should be checked by a doctor if it doesn't run its course in a normal time to prevent pneumonia. Otherwise it really is just an IV once every 8 weeks for most people after the first loading period. One thing to consider with remicade is that once you start you pretty much cannot stop for an extended period of time and then return to the medication. So once you start, you have to be committed to it until it loses its effectiveness because it is a great medication but with so few powerful treatments in our arsenal, it is worth keeping the committment until the end.

One other thing that they should have told you is that she NEEDS to be checked for TB before she gets her first infusion. If they didn't do a ppd skin test and a chest x-ray then she really should have those done before she starts the remicade from a safety standpoint. I don't think many doctors would prescribe remicade without requiring these checks ahead of time just for added safety and peace of mind.

Also welcome to the forums, feel free to ask any questions you may have and we will do our best to answer them for you. These forums have been a great resource for me and many others.


Senior Member
Hi Ryan... Welcome to the forum... On the other hand, sorry you folks had a reason to join.. I'd reiterate everything saidinstouch wrote... the big deal of going with remicade is that it does require commitment... possibly life long. If there is any doubt about keeping that commitment, then look for other options. One might be humira... Common opinion has it that it does everything remicade can do; yet lacks that.. "if you stop it, the door closes forever" scenario that remicade typically comes with. It also offers another possibly important benefit... pre-loaded injectors that can be done at home.. Remicade (I could be wrong about this, haven't gone that route yet myself - too expensive - can't financially commit to this treatment AT this point in time) typically is done in clinic or hospital settings via infusion. It may not matter a hill of beans now.. but you mentioned a miscarriage (my sympathies on that - such a double whammy on top of this diagnosis)..

Anyway, if you are planning a family, or have one now with plans to expand THEN regular trips to clinic/hospital for infusion therapy WITH no end in sight COULD put a dent in those.. Kids are wonderful, but they also make wonderful germ carriers... pick something up at day care or school, etc., then bring it home to Mom N Dad free of charge. Hard enuff if parents are healthy (been there, done that) but I can't for the life of me understand how parents who are on lifetime immuno-suppressing therapy cope at all.

Anyway, since I have no experience with either Remicade or Humira, I can't guess at the timeline you will be looking at for either to 'load N kick-in'. The situation you describe sounds like SOMETHING drastic needs to be done AS SOON AS POSSIBLE. question that arises to me is why haven't the docs suggested 'hi' dose steroids to calm things down, give you folks time to look at N weigh your options? Bear in mind that i'm no doctor... just puzzled by this course of action. My vague understanding of either of these biologics is that they do take time to load... Course, you probably should take a peek at some of the diaries folks keep on here, especially if you can sway your docs to going the Humira route.. but that may depend on insurance perogatives... some insurers INSIST docs try the cheaper of meds first...

On the LDN front... it works.. At least it's working for me. I don't think I was in as bad a condition as your wife when I started it, and had the luxury to allow it to slowly do it's magic. But, if for any reason you folks reach a point where Remicade or other treatment isn't working.. give LDN a look. The big obstacle there is getting a doc to prescribe it, and a pharmacy that can custom compound it. As for SCD, I think it's a major commitment, and one has to religiously follow it, and stay on it for years, to be effective. It wasn't my cup of tea, as I knew it was too stringent/restrictive, even for me.... given my present diet. speaking of which, whether your GI's agree or not, IF your insurance will accomodate it, see an IBD nutritionist ASAP. considering the extent of the inflammation, you'll want to take steps so you minimize the strain on the GI tract; and maximize the benefits of the foods in your wifes diet. Well, I've rambled on long enuff. All the best to you both..
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The infusions aren't that tedious, but you are out of commission for the entire day due to a benadryl shot/pill they give you to reduce injection reactions of the remicade. If you can make the financial commitment, I would suggest doing remicade first simply because it works...and it works very well and quickly (within a day or two typically even while loading the first couple weeks). The reason I say go remicade first is this: once it stops working(and it typically does due to technical details within 2-3 years), she will always be able to go on humira then and hopefully there will be even more options out down the road. Whereas if she goes on humira now and finds it ineffective totally, then she only has remicade to go with and personally I like knowing I have other potential options...its a big stress reliever to me at least.

The issue with kids being germ magnets is a serious concern if you want a family, but as long as she is diligent and you can help out with sick kids then it won't be a problem. Honestly in 2 years of being on high doses of immunosuppressants I have only been sick once and it was a 24 hour flu (not food poisoning since I caught it from my GF after she had it and we ate different foods) and that passed faster for me than for her. What I am saying here is that the immunsuppression is a concern, but you can alleviate it and make a normal life without worrying about getting sick too much. Just watch for lingering illness is the biggest concern so you can catch any major problems early and prevent complications.


Senior Member
Sorry saidsintouch... but I don't follow the logic/legitimacy of the comment "if she goes humira now and finds it ineffective totally, then she only has remicade to go with"... Neither remicade nor humira are the "only" options..
At that level if they are ineffective then she is left with methotrexate and some other nasties as far as side effects go if her disease is that serious. It just seems logical to use the one that has a time limit first and that more doctors are comfortable prescribing to buy 2-3 years hopefully and see what the drug scene is like then. That is just what my preference would be if the doctors are looking at giving the big hitters. They could also go with prednisone and then get her on a maintenance med and taper then see where she is at in a couple months and then decide if a biologic is right or not. I guess it's really a personal preference in the end, but I do know the remicade works well and works extremely fast whereas I managed to have a flair on the humira.
Where is this coming from that Remicade has a time limit? I've heard people on that for nearly a decade (it came out in 1998, as this is actually it's 10 year anniversary). You make it sound like 100% of the time it's innevitably going to fail each and every patient? Is there some proof of this?

I also beg to differ on the quickness it acts in, as I am going on 3 months soon on it, and still slowly seeing improvements from it, as my doc says everyone's different on it.

I'd hate to think that I've been put on a "band-aid" only to delay an inevitable crash back into flare-land in 2-3 years....


Well I guess my thinking was to get the inflammation under control rapidly, begin SCD asap, and then see where we're at.

Does anyone know: would using remicade now preclude us from using LDN in the future?

SCD does require fanatical devotion, but I'm definitely game for it (I would do it too). However, given her current state of misery, I don't think she could handle it right now.

The two things that drive me crazy about SCD is a) doctors are so incredibly resistant to it, and b) because of that, the treatment lives in the same neighborhood as faith healing and folks waiting for the mothership. But the reasoning behind it seems sound and the anecdotal evidence is overwhelmingly positive. I wish someone would fund a real study of SCD.

On that note: I'm looking for someone that has tried SCD, stuck with it for a good amount of time, and had it completely fail for them.

I agree that the response by our hometown docs seems a little underwhelming. I figure that if we're going to go the "traditional" route with this, we are currently in what might be the best place for doing so, and we're lucky to be geographically nearby and have insurance that will pay for Mayo.

My concern is that I don't want to remove other options down the road by going with their recommendation - I know about the fact that once we go on it, we can't go off and then back on, but as you might imagine my hope would be to go off it in a planned manner, hopefully maintaining with diet or LDN. I can dream, right?

Thanks for the replies - like I said, this seems like the only forum that really offers people's unbiased opinions - I'm incredibly grateful for that.

It isn't 100% guaranteed that you will build up a tolerance/resistance to remicade but from everything I've been told by some of the doctors who have been prescribing it the longest (IBD Clinic at Cedar's Sinai in Los Angeles) it is pretty standard that 2-3 years is the timeframe you can expect from remicade. As to the quickness of the response, I noticed it alleviating my symptoms immediately after the first infusion, but others might take longer for the full response. It might be a bandaid, but buying 2-3 years at the minimum is a pretty good way to start and then re-evaluate the disease progression as well as seeing what new options are out seems like a damned good way to go. Its also a good time to see if weaker maintenance drugs might work if you were able to kick your disease into remission when they weren't working before. Worst case is you can start on humira or another biologic if the weaker treatments don't work.

Basically its all a guessing game as to what will and won't work for each person as well as how effective a treatment will be and for how long. I would say start the remicade now for your wife and take that time to get used to the SCD diet. You can then discuss with your doctor in 6 months or a year from now if trying just the diet + LDN would be a good idea or if you should do this when the remicade likely loses its effect or she has a reaction to it. That way you can take her inflammation down now quickly and get her feeling better so its easier to adapt her lifestyle to the one that seems best for her and you. Then just evaluate your options with the doctor and if you want get a second opinion on the matter too. It is good you are being so proactive to help her like this because it definitely helps having someone else who is as commited to her well being as you are when you have a disease like this.
I would have to disagree about the "damned good way to go", as I was conditioned by my medical team/everything else I've seen/read that Remicade is a lifelong-intended fix (not cure) and that I'm not just buying time, and that yes, some people just don't respond to it at all, or, for long. Granted I've seen many statements on how Remicade stopped working out of nowhere, but I figured those to be the exceptions. I have realized from the start that this happens often and was advised of this by my doc, but to "everyone"? If true, how is that a good way to go?

I'm not saying you are wrong or those docs are wrong, I'm saying that there is conflicting info about this damn disease and it's pissing me off. I sure as hell don't want an expiration date on something I was told is one of the last options for me.

What I'm more disagreeing with isn't the liklihood of Remicade failing (as I feel that's debatable/individual), but the way you make it sound like I should be grateful for a couple years when I was given a totally different impression. I'm sick of playing hopscotch with treatments while I drain my bank account.


Senior Member
I disagree... If you go the remicade route, after evaluating your options AND getting your doctors professional 'rationale' as to why they think it is the best choice at the moment, then stick with it. There is another thread on here that describes a new regimen that tackles things a little differently than the traditional 'ramp up' method.. don't quote me, but I think it involved a combo of remicade/infliximab AND azathioprine to hit the disease as hard as possible... The study showed significantly better results than the traditional methods... As for LDN, or LDN with the SCD diet, neither of them is precluded, per se, if you go the Remicade route. However, going Remicade pretty much demands that you stay on it as long as possible...
And you can't mix N match LDN with ANY immuno suppressing remedies...
LDN doesn't approach the problem by suppressing the immune response, it does just the opposite... it resets it, 're-boots' it (if you will) allowing ones body to heal naturally... It took over a month for it to have real enuff big improvements on me that I knew it was going to work to some extent, AND I did have a setback... whether a mini flare, or a complication.. I dunno. I do know it all settled down; and my improvement continues... BUT IT HAS only been a few months, LDN is only 60 - 89% effective (in a single trial). I would have to say, depsite the
success [UNQUOTE] I have had with it... that prematurely coming off of remicade to pursue LDN qualifies as a MAJOR, HI STAKES GAMBLE. So, whether you go remicade, humira, or methotrexate, or imuran/azathioprine... if any of those work, stick with them as long as possible. Just be sure to question your doctors FIRST before you folks make a decision. Insist they tell you why they suggested 'their' solution over the others... AND ask about LDN and the combo therapy.. As for SCD, heck, even diet alone... I personally believe (and its totally just a hack opinion) that many docs shy away from diet because, like you said, about faith healing and the mothership, there is that aspect to it... in some circles, when folks turn from being rational N become fanatics. Plus every bookstore shelf or late nite infomercial has some 'guru' promising to cure everything with their 'diet'.. And, how does a dr prescribe a diet? write it out on his/her prescription pad? And what do they charge you for it, how do they bill for it (probably a consideration too) AND it is outside their comfort zone... they recieve comparatively little real training on nutrition... And how do they monitor your diet? Bloodtests/labs?

I wish you both all the best.. Handing out advice is a risky proposition, NO matter how inocous (sp?) AND even with the best of intentions. I saw some of the other instructors at the colleges I taught at fall innocently into very serious trap. They'd see a student; notice what gifts, skills, etc., they had that made them stand out... and then the advice would start to flow. But a curious thing took place... instead of just offering the advice, giving the kids the 'info/options' that were out there, some of my peers 'influenced' (a mild phrase for it - 'pressured' would be closer to the truth). Problem is, one can't see the whole picture looking in from the outside. If one thinks that they know what's best for someone else; then personally I think "one" has lost touch with reality. It's hard enuff making decisions like that for yourself and then only you know the 'scorecard'. Some do it with the absolute very best of intentions; others see someone failing to take 'their' advice as some sort of personal rejection. Being never reticent about voicing my opinions, I told them.. "you want to be a teacher, then educate. You want to make a sales pitch, then change careers". I don't think its semantics, advice has no profit motive... but every hi pressure sales pitch was from someone on a commission of some sort or other. Anyway, I'm digressing. It IS your call.
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Well, I may as well give you yet another opinion. I would do a course of prednisone to get it under control and then go right to LDN.

My thinking is as follows: No treatment works for everyone, but most all treatments have side effects, virtually all of the common ones have the potential for serious side effects although the risk is low.

Since no one knows ahead of time what is going to work, why not use the least risky one?

On top of that there is no permanent treatment that will last a life time with the possible exception of LDN.

LDN has no known serious side effects and does not suppress the immune system.

If it works, and the evidence that is available indicates it works to one degree or another most of the time, odds are you will not have to revisit treatments again.

Plus it is about the cheapest treatment available.

It does not eliminate any other future treatment option.

I almost forgot this one. LDN also protects you against Cancer, MS, Sjogren's syndrome, Lupus and several other auto immune diseases. Try find another Crohn's treatment that can do all of that.

These are the reasons I went on it. I am completely normal at this time. Of course that does not mean that will always be the case, but I could not ask for any more right now. Three of us on the forum went on LDN. It has worked well for two of us, the third guy disappeared. I am assuming if he was still ill, he would be here, but that is not known for sure. I do not even remember who it was now. Can someone with a memory, PM him to get an update?

Like Kev said it is your call. I hope whatever you two decide to do works well for your wife.

Good Luck

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Senior Member
Well, I'm going to jump back into this fray again (hard to determine at times which end of me has the most wind coming out of it).... BUT the reasons I chose NOT to proffer LDN as the best choice (despite the fact that all of what Dan has to say about it is true)... is that it takes a while for LDN to indicate whether it's going to work for someone or not; and it's a gradual process. The study was based on a 14 week trial, and only covered, what, less than 30 patients. And it wasn't a double blind study... so there are a lot of reasons a lot of doctors WOULDN'T even consider it as this stage. I could be wrong, but I'm betting no one at the Mayo will offer it, perhaps not even discuss it. Why? Just a hunch, but IBD in general isn't typically life threatening; and taking chances like un-approved therapy with so little medical evidence is a.) asking for a lawsuit b.) likely a Mayo career suicide. Since its not a life N death situation, why take the risk?

The pred treatment to bring things under control quickly, then a switchover to LDN 'COULD' work; but it's literally a 'medical' unknown, despite the fact that the study was published in the American Journal of Gastroenterology. I went that route, but any GI worth his/her salt will dismiss my, or Dan's case as 'purely anecdotal' info. So, now that you folks have managed to get into see a GI at the freakin Mayo Clinic, do you want to risk that doc writing you both off as 'crackpots'? That is the risk of pushing for LDN. I took that risk to a much lesser extent; my GI, tho great, is not on staff at the Mayo. and she and I had gone thru a number of other treatments with no success. And my remaining options were both dwindling AND loaded in potential major side effects. As of right now, LDN doesn't seem to have any major side effects or long term risk factors associated with it; and it is almost laughably inexpensive... about $1 a day (not that expense should be a consideration; but again.. the reality is that it is for many of us with IBD).

So, in brief, what would I do IF it were me? Well, when it was me I took a big gamble... that my health would seriously deteriorate while waiting to see if the LDN DID work; and that I would risk the relationship I had with the best GI doc I'd found in the area ... that was a 2 year search process. It seems to have paid off. Or maybe I was just lucky? The question then becomes... How much are you folks prepared to gamble? and, to quote an old movie hero "Do you feel lucky punk?" Ever notice that Clints gun was empty?
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Kev is correct, that most likely they will write you off as a crackpot. I have been one all of my life, so I am quite used to it.

My Gastroenterologists patients are mostly on Imuran or some of the other immune suppressants in the case that the Imuran did not work well. They have varying degrees of success. Some are doing well, and some are not. They all are subject to the side effects of the medications to one extent or another. All the evidence indicates that at some point the medication will quit working or not work as well at some point.

I am a crackpot and conferred with what would be considered by many as a crackpot doctor. My Gastro was not a crackpot and would not prescribe LDN. The difference is that I am well, without any known consequences, and quite a few known benefits. While the evidence in the form of scientific studies is thin, the total evidence from users for various autoimmune diseases is quite compelling. None of this means it will work for any particular individual, as with any other medication.

Users of LDN really have no reason to fake there results. They are mostly people just like us that simply want to have a normal life. There is no financial gain for them or anyone taking this drug. The same cannot be said for studies done or sponsored by pharmaceutical firms. You do not have to look far to find any number of studies that indicated the next miracle drug, that later were pulled off of the market for safety reasons or found largely ineffective. Check out the latest news on Depression drugs for a good example.

Probably the biggest influences on my decision was a room mate I had after my stricture surgery. He appeared to be a retired older gentleman, who has had Crohn's for over twenty years. I figured he did not look too bad for someone that had a serious disease for so long. After talking to him for a while I found out that this older retired guy was two years older than me. He was forty-seven years old. I swear, I almost called him a liar. The disease had ravaged him so badly, he looked twenty years older than he was. He was in for his third surgery, if I remember correctly. He followed his doctors advice and this was the result. He may have been a hard case, that could not be treated effectively no matter what. I have no idea what he had used or tried in the past. I just knew that I was not going to take this disease lightly, nor rely solely on my doctors recommendation. I would do whatever was needed to get the results I was looking for. I never have used a conventional Crohn's medication to treat my disease. Not that I ruled it out, I just never got around to needing any.

These are all the thoughts that went into my decision to use LDN. Fortunately, I was in the group that it does help. You will have your own reasons for following whatever path you take. Your reasons will be different than mine or any one else's. Just remember that you can find support here no matter what direction you go.

To each, his own.

I would agree with what Dan suggested with going on a course of prednisone and then switching to LDN if that is the course you ultimately want to go and saving the biologics for if (and I hope this isn't the case because LDN sounds promising) the LDN + SCD doesn't work for you. This is sort of what I was trying to say before, but probably managed to type wrong. Essentially she needs a hard hitter now to get things under control and the standards are prednisone or remicade.

The most important thing you can do is be active in her treatment. If a doctor suggests you take a course of treatment, ask why and what the alternatives are. Make sure they listen to your suggestions and if they disagree, ask them for their reasons again and don't be afraid to get a second opinion if you are truly unhappy with what the first doctor offers. The mayo clinic might be open to trying LDN since they are known for being at the cutting edge of treatments for many diseases (if only they could have saved Robert Jordan though I suspect they greatly prolonged his life) so there is a chance the doctors there will be open to trying something new. It can't hurt to ask is my policy when it comes to treatments because in the end you have to accept what the treatment can and cannot dofor you as well as the risks associated with it.


Well -

Short story: we went for the remicade. it seems to have worked splendidly.

Long long story: as I mentioned, the response from our first doc/nurse practioner was underwhelming. Even my layperson comprehension of the state of her disease suggested that it was severe, and I did not believe that the "standard" course of treatment was going to be appropriate. In our case, this course of treatment involved being discharged from hospital (after 6 days of IV steroids), and then going on oral steroids (40mg pred) and mesalamine, and take a wait and see approach. With what I considered to be a rather severe case of inflammation, I thought it was foolhardy to start with such a "weak" maintenance med. And, in hindsight (I'm new to this remember) shouldn't she have been "more" into remission upon discharge?

Sooooo - we went for a second opinion here in our hometown, not necessarily for diagnosis, but for treatment (and hopefully someone who wouldn't dismiss me when I started talking diet and LDN). Anyhow, this doc ordered a barium swallow (to be followed by capsule endoscopy). The radiation tech at the procedure indicated "narrowing/inflammation of the small bowel, and the beginning of a fistula." They also said the inflammation in the colon was still severe. (I never saw the xrays myself.) Note that, when I heard this, this is that point that I said screw this nonsense, we're going for Mayo if we can.

We got into Mayo 6 days later (and thus never had the capsule endoscopy.)

So going into the appt down there, I was under the impression that a fistula was beginning, which for me was a huge vote for remicade...

The first day they reviewed the other data from the previous CT scan, the colonoscopy, and barium swallow. First thing they said was "you were discharged too early." They immediately recommended remicade. My nature also immediately was suspicious. I'm not a conspiracy nut, but money talks and bullshit walks and all that.

Next day (this is Thurs Apr 10 btw) she went for a new CT scan in the AM and had a consult with docs in the PM. I went with the to the consult, and there was some extremely good news: no inflammation in small bowel, no scarring, and best of all, no fistulax (and she spent a good 45 minutes with us going through the CT scan - refreshing compared to the silly ass way other docs go through stuff, only offering their interpretation w/o offering the raw data...)

The bad news: inflammation was still acute and rather severe. Oh, I should also mentioned that, symptom-wise, my wife was back to square one - unable to care for our 14 month old, shitting blood, unable to eat, psychological stress from those things. Doc gave us two options: readmit to hospital and restart IV steroids, or remicade.

I talked a little about LDN, but I knew that it wasn't appropriate at this time anyway - this was an acute flare and needed to be treated as such. Doc did not dismiss LDN, but offered the same "we need to wait for Phase 3 trial results.." and of course it wasn't approp right now.

So there we were: the good news of the lack of a fistula was a double edged sword in a sense - no longer was remicade a no brainer, we had to decide using this new info.

And we went for it. My thinking is as such: this will buy us time and hopefully rapidly and aggressively get this under control. It was a gamble - as I believe Kev mentioned, a high stakes one.

So - we are cautiously optimistic. Bleeding stopped immediately. Pain stopped immediatey. Stools are normal (I should note here that my wife's baseline stool isn't even normal - loose and full of food [ never blood ] for many years [ for whole 'nother thread some time - we suspect she's had a nutty GI tract for many years, just with no pain/blood/etc that would make a person think they have a disease ] ).

The difference is downright ridiculous. I mean we're at 3 days, and she feels great - walking the dog, going to the grocery store, *smiling*... Things she hasn't done in 2 months.

So - going forward, I am going to operate with a "hope for the best, plan for the worst" attitude. I want to have a game plan in place for if/when the remicade stops working. We have to start heavily modifying our diet - we are restaurant junkies, not junk food per se, but brewpubs, sandwich shops, etc. I'm also going to direct my efforts to developing a more full understanding of this affliction. I've been my own educator, lawyer, and doctor for many years, and I've done well (perhaps by luck). Now, with wife and child, I can't be quite as cavalier as I have been in the past, but my life and work revolve around complex problem solving.

I'll repeat my thanks for your input. To be able to communicate with *thinking* people in a similar situation is such a relief.

Couple of questions: can anyone recommend a IBD dietician? And, Dan B, I'm in the same region as you, can you tell me who you talked to that was willing to discuss LDN?



Senior Member
Hey Ryan, that's great news. Here is where I eat my words on pre-judging the Mayo docs.. Exploring LDN seems a little premature for you folks at this stage. Reason? you're having great, immediate results with the remicade. I realize that you're hoping for the best, planning for the worst, but .. try not to be tooooo.... fatalistic... overly pessimistic... esp. in the missus's view. I know that... (and here I'm showing my... generation ingrained thinking pattern... tho some might have a harsher term for it) but I 'think' women are very 'intuitive'... and can be emotionally influenced, albeit even indirectly... by the emotional place of those closest to them. Maybe I am just being 'superstitious'... call it what you will. But if your missus senses that you 'expect' the remicade to eventually fail, those thoughts just may speed up the process. Write it off as a silly ol fart being too frightened to spit (please note how I spelled that) in the wind; or as a person who puts too much strength in the concept of self fulfilling prohpecy; but it can be very important to put those 'fears' of yours on the back burner, out of the sight of your wife. The biologics are considered the Cadilac of treatment. I figure that expressing that attitude... expousing 'most' positive thoughts, MAY, just MAY, extend the 'sweet' life your missus is currently experiencing at the moment. Look, unless you've gone thru it yourself, you've no idea of just how 'prescious' these 'remission' or 'recovery' periods can be for us, OK

The LDN will keep. There is another study currently getting under way. It should resolve any issues that some shortsighted docs throw in your path if you folks ever need to pursue it. You've bought yourselves some time. The reality of LDN is that... ..well, prescribing it for IBD is what they call off label prescribing... some docs shy at that. It has to be custom compounded... typically from bulk naltrexone powder.. with a non lactose filler (just a precaution)... At the moment, theres' only about 8 places in all of North America that do that. (6 in US, 2 in Canada). [that I know of]

As for 'IBD' trained dieticians, nutrition counselors, nutritionists... that will probably take a lot of legwork/research on your part. course, you CAN do your own research, buy some books (the forum links to a couple of sources). I may have mis-spoke IF I used the term "IBD trained" in talking of nutritionists. I lucked out. Hospital only 10 minutes away has a full diet clinic... and the dieticians/nutritionists there are very experienced in IBD, as well as diabetic, endocrinology (sp - if there is such a word). But I think MOST of their training, per se, is general nutrition... plus the on the job or self pursued training/experience dealing with folks with IBD or diabetes. This may hold true for other hospitals, clinics, etc.. Do any of the nearby ones have GI clinics or depts.? These can be a valuable resource. Are there any local support groups? Again, check with the local hospitals, drs, clinics, etc for info. The learning curve of something as simple as diet of IBD is both a steep one; and a constantly changing one. A good starting point is to keep a daily diary. Everything that goes in the body is recorded (and I DO mean everything)... foods, drinks, meds, supplements, OTC remedies, etc..
Keep monitoring the body's reactions... b/r trips, stool (amt, formation, ...)
pains, fevers (temp. in degrees - took me a while before I started noting how hi my on/off fevers would get - only did so when ER doc asked me how hot I got during bad reaction to AZA)... energy levels.. Essentially a daily progress chart of sorts... to start off with. Once the missus knows what 'triggers' a lot of 'bad' days... she can custom tailor diet, supplements, activities, etc., until she reaches a fairly stable plateau.., when the daily notations can drop off. I mean, right now.. neither of you know if she is sensitive to .. lactose, other sugars.. OR fats... Welll, the list could go on and on (like me...) Fibre rich foods are probably NOT a good idea for her right now, not if she is inflammed N bleeding (it could be, down the road). Problem is that fibre is being incorporated into everything. Same goes for lactose (I go on about that because it is one of my triggers; and you mentioned she had a wonky GI system pre MAJOR symptoms).. lactose is embedded in things that don't jump out at you.. like margarine, or vitamins, or orange juices.

Speaking of digestion... I've given you way too miuch to digest. Hope you don't develop heartburn. (and we've got a little mini debate underway here at the forum currently on the pros and cons of Omega 3 and IBD. Check it out - cause Omega 3 is another thing that is being embedded in everything AND may not be the greatest idea for IBD - then again, it may be.. you'll see if you do a little reading here; or a lot of research elsewhere, OK?). OK. I'll end this (is it still considered verbal diarrhea if it's all typed out? ;-) ) for now. Again, congrats. Think you folks made a wise choice. All the best, OK?
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Glad you had such good results right off the bat. That is not always the case, and it is very good news.

I agree with Kev, if it is working stick with it. It is really difficult to find anything that works well and the time to consider changing is probably if the situation changes. But in the event things go South, it would be a good idea to have a back up plan.

The only other thing I would encourage is to eliminate milk from her diet. I am fairly well convinced that this will help anyone with Crohn's or at least help them not to get worse.

The doctor I talked to is Dr. Ayer in Chicago. Very nice man and quite open minded. Link below.


That's awesome Ryan. I go for a fourth Remicade infusion this coming Friday, as I'm still seeing slow results, still improving slowly. Hey, this is a present from the insurance company...this Friday is my birthday, and it'll be the most money ever spent on my birthday, I pay $30, they pay a few thousand.

Again, congrats. You seem to have found the magic bullet for her, and that's sometimes a battle that takes even years for some.
I'm glad its working well for her. Stick with it and as Kev said, don't project thoughts it can fail to her, just have plans for the future. Hopefully she'll get a good run on it and in that time many new options can arise. If you get your diet/nutrition to be well balanced for IBD (though watch that your health isn't jeopardized in the process as IBD patients have slightly different needs from those without it) and you can get on something like LDN once it gains a bit more footing, then I think you two can keep this under control for her. I wish you the best and hope for her health to stay in good order!