I have had CD for 25 years now and am currently experiencing a fairly extended flare up. I have been taking Absorb Plus shakes for 7 weeks now with clear broths, fresh fruit and vegie juices and the occasional fish and avocado.
Most of the time I have felt significantly better but recently I have been quite low in iron, Hence I started a little liquidised food but then some bleeding and loose motiones commenced. I was just about to start probiotics feeling that the inflammation would be settled enough but now I am unsure what to do. Also I have been doing EFT and cranial therapies plus mucosheal, aloe vera, fish oils etc.

I go to see my specialist tomorrow who is advocating surgery for where my bowel is narrowed. I would like to resist this but after feeling that things are perhaps not improving as I thought they would be, I feel concerned about whether that will be the best thing to do.

Have a fair bit of stress in life at the moment due to my husband having serious health issues too.

Any advice, appreciated.

Hello Pauline,

I'm sorry to hear you're having such a hard time. It must be very frustrating and scary to have tried everything you have and still be feeling so unwell.

I have a few questions for you.

1. Did you try the elemental diet without any solid food or fruit and veggie juices? This could make a significant difference, even if you tolerate those foods well. The carbohydrates in some of the fresh fruit and veggie juices could feed the intestinal bacteria, which is counter to the purpose of the elemental diet. Also, it's possible that those foods were continuing to irritate the inflammation and thus prevent it from subsiding.

2. How are you with milk products in general? Have you tested to see if you tolerate whey protein in large amounts? Sometimes that can be hard on people with compromised digestion. I can't tolerate too much whey myself.

3. Did you do the wild oregano oil protocol during the elemental diet? It's possible that you have an infection or that your gut bacteria is way out of balance. You might need the additional support of wild oregano oil or olive leaf extract.

4. Jini has revised the elemental diet/wild oregano oil protocol and now suggests that people take probiotics throughout the protocol, because anecdotally this seems to produce better results. If you're sensitive to probiotics, B. infantis may be a good one to start with (Life Start 2 from Natren, cultured in goat milk which is easier to tolerate than cow)

Finally, there are a few more "experimental" options out there that have saved some from surgery. They both have studies behind them which are very encouraging, albeit small, open label studies.

One is TSO, or helminth therapy. Go to www.ovamed.de and click on the publications section to read the studies and articles about it. There's a discussion forum there which is useful as well.

The other is LDN, or low-dose naltrexone. Dr. Jill Smith at University of Pennsylvania just did a trial with it in May 2006 with excellent results for Crohn's patients. Go to www.ldninfo.org.

Best regards,
Chris

Thanks for your response. In answer to your questions:
1.) Oops. I did drink fruit and veggie juices (carrot, apple & celery) during the diet - so I gather from your point that this may have undermined the effectiveness. Perhaps I should try again, this time with no "added extras"?

2.) To be honest, I think that I tolerate the whey protein ok but I am not exactly sure what indications I should look for to tell me that I can't.

3.) I didn't do the wild oregano oil protocol but I did take olive leaf extract regularly. I am sure that my gut bacteria is way out of whack as I am on 200mg of Flagyl every day! At one stage my specialist had me on 800mg pd which I just hated.

4.) Thanks for the tip on the probiotics during the elemental diet. Does this mean that Jini now thinks that it is ok to do this when there is inflammation present?

5.) Additional studies sound intriguing - esp the helminth therapy!

Finally, my gastroenterologist suggested today that I go for a CT test where they will introduce about 2 litres of a barium/ct contrast through a naso gastric tube and follow it through. If I am struggling to digest a normal diet, I am not at all sure why he thinks I can cope with that!

Thanks again for your response. It is most encouraging to be able to "chat" regarding this.

Pauline wrote:Thanks for your response. In answer to your questions:
1.) Oops. I did drink fruit and veggie juices (carrot, apple & celery) during the diet - so I gather from your point that this may have undermined the effectiveness. Perhaps I should try again, this time with no "added extras"?

Yes, fruit and veggie juices are not considered to be elemental. They are relatively high in simple sugars that could be feeding unhealthy bacteria in your gut, and they have some fiber which has the same effect. Also, raw foods can be irritating to an inflamed intestine.

2.) To be honest, I think that I tolerate the whey protein ok but I am not exactly sure what indications I should look for to tell me that I can't.

Symptoms of intolerance would be gas, bloating, constipation or diarrhea, rash, etc. If you tolerate it well, that's great.

3.) I didn't do the wild oregano oil protocol but I did take olive leaf extract regularly. I am sure that my gut bacteria is way out of whack as I am on 200mg of Flagyl every day! At one stage my specialist had me on 800mg pd which I just hated.

This would definitely affect the success of the elemental diet, because as you know Flagyl severely disrupts the microflora in the gut. If there's any way you can get off the Flagyl and use oregano oil and olive leaf extract instead, that would be a much better solution. Flagyl has no activity against yeast but is a broad-spectrum antibiotic, which means it will kill your gut bacteria and could lead to an overgrowth of yeast. Oregano oil has activity against both bacteria and yeast, but some studies show that it doesn't kill certain good species of bacteria.

4.) Thanks for the tip on the probiotics during the elemental diet. Does this mean that Jini now thinks that it is ok to do this when there is inflammation present?

Yes, along with the oregano oil, olive leaf and strictly elemental diet, I'd recommend using Natren probiotics as Jini suggests. Check the "book updates" section on her website for more information.

5.) Additional studies sound intriguing - esp the helminth therapy!

The helminth therapy is very promising and people I know have gone into complete remission using only that treatment. If you can get your G.I. to prescribe it, it may be worth trying. However, it's very expensive.

Finally, my gastroenterologist suggested today that I go for a CT test where they will introduce about 2 litres of a barium/ct contrast through a naso gastric tube and follow it through. If I am struggling to digest a normal diet, I am not at all sure why he thinks I can cope with that!

Yes, all of these exploratory procedures disrupt the flora in the gut. Make sure to take probiotics afterwards if you can't avoid the procedure. I would ask myself (and my G.I.) in your shoes if it is truly necessary. One standard I use for making such decisions is, will the information I gain from the test lead to any new treatment or outcome? If not, I don't proceed.

Thanks again for your response. It is most encouraging to be able to "chat" regarding this.

Your welcome - that's what we're here for.

Chris

Chris
thanks for your response. You mention that intolerance of whey protein can be identified by gas, bloating, diarrhea among others things. I have had some of all of these - but it is a usual part of my bowel habit so I have not really connected it with the whey protein. If I am not tolerating well, what does this mean for going elemental and using Absorb Plus?

Pauline,

That's a very good question. I'll do my best to answer it, but the caveat is that I have had similar difficulty isolating the effects of certain foods.

The theory behind the elemental diet is to provide total bowel rest and get you to a point where you're not experiencing the digestive symptoms you normally do (ideally, of course). Once you get to that point, you can then begin to reintroduce foods and see how they affect you.

They whey in AbsorbPlus is almost entirely lactose free, has no casein and is (I believe) partiallly hydrolyzed, which means some of the native proteins have been enzymatically broken down to make them easier to digest. Nevertheless, some people (myself included) still seem to have trouble digesting whey, possibly because they are low in the protease enzymes needed to break it down.

Also, I seem to remember Jini saying that gas and some bloating is a "normal" reaction to the elemental diet, and not necessarily an indicator that it's not working. I struggle with that, to be honest, because gas and bloating are two of my main symptoms and if I still have them in spades on the elemental diet, 1) how do I know if it's having the desired effect, and 2) how will I do the food reintroduction afterwards if I don't have a "symptom free" baseline to start from?

One solution would be to try supplementing with protease enzymes which are readily available. Another solution would be to find a source of protein that still provides the excellent amino acid profile of whey and is still "elemental", but doesn't cause those reactions for you. I've been working on that for a while due to my own response to whey, and I'll let you know what I come up with.

Best,
Chris

thanks Chris.
I will source out some protease enzymes and see if that makes any difference!
Pauline

Since my last posts, I have re-started the elemental diet again and this time have not included anything else - e.g. fruit and veggie juices. I have also cut the Flagyl down to 100mg per day (and sometimes even 50mg) and have started on Bifido factor. Due to previously bad experiences in introducing probiotics, I have started out very cautiously and am now up to 1/8th tsp per day. I do feel slightly off colour since starting the probiotics but nothing too unpleasant.

I am interested to know if I can start the Wild Oregano Oil protocol while still being on some Flagyl and on such a low dose of probiotics? Or do I need to introduce the other probiotics before I can start?

Grateful for your advice.

Hi Pauline,

The wild oregano oil kills yeast as well as bacteria, which could be very important for you since you've been on Flagyl for a long time. As you may know, yeast overgrowth can become a problem with long-term antibiotic use. Wild oregano oil has been shown to be as effective as nyastatin and amphotericin B (prescription antifungals) in killing candida albicans. So I would say you could start it now, and as you work up to the maximum dose (10 drops 5x/day) wean yourself completely off the flagyl if possible.

And of course, continue building up the probiotics as you can tolerate them.

You can also read the thread on "prebiotics" in the main forum and decide if you want to incorporate them as well. If so, let me know and I can make a recommendation.

Best,
Chris

Thanks for your advice re the Wild Oregano Oil, Chris. I will make a start and also keep working on the probiotics. I had a quick look at the prebiotic section - there is a lot of information there so I will read through and come back to you later on that one if I may.

Best

Hi Chris
I have started a small amount of the Wild Oregano Oil (just 6 drops yesterday) and slightly upped the amount of Bifido Factor to just under 1/4 tsp. Unfortunately, I felt unwell last night - cramping, night sweats, headache, some dirreaha and had a temperature. By 5am, I gave up and took a little Flagyl - probably the wrong reaction but I guess there was bit of fear factor creeping in there. My gut reaction is that this is a reaction to the probiotics not the Wild Oregano Oil but would be grateful for your advice.
many thanks

Pauline,

It's difficult to say exactly what is causing the reaction you're having. I tend to think all of the symptoms you mention are quite unlikely to be caused by probiotics, but of course I can't guarantee that and if your intuition is telling you to back off of them by all means follow that guidance.

If you've been on antibiotics for a long period of time, you have very little good bacteria to prevent the bad bacteria and yeast from proliferating once you withdraw from the drugs. This is why it's important to withdraw slowly, while simultaneously incorporating wild oregano oil to keep the bad bugs at bay and probiotics to get some good bugs in there. I would expect the road to be bumpy and probably not linear. You're re-establishing an entire ecosystem in there, and it's unfortunately not going to happen overnight.

You may also want to add prebiotics to your regimen, as they selectively stimulate the growth of good bacteria. Now Inulin can be found on the Internet and perhaps at local stores.

Finally, in order to truly determine what your symptoms last night were a result of, you'll have to play detective. Try going back down to 1/8 tsp. of Bifido Factor tomorrow night while doing the 6 drops of oregano oil during the day. If you feel okay that night, it's likely that it was in fact the higher dose of Bifido Factor. You can either increase more slowly, or try LifeStart 2 (which is Bifidobacteria Infantis cultured in goat's milk) or DDS-1 (acidophilus) instead. However, if you still feel unwell, it's more likely that it was the oregano oil. If that's the case, you can try olive leaf extract instead (it has a similar effect), or build up more slowly with oregano oil.

Let us know how it goes...

Chris

Hi Chris
thanks for your advice. I will try the detective approach which you suggest - it sounds very sensible and I wish I had thought of it at 4am!

Hi Pauline,

Chris has been giving you great advice, so just carry on!

Also, keep in mind that the die-off effect (Herxheimer Reaction) can cause all those symptoms you listed (look it up in the Index of LTYG), so don't give up!

take care,
Jini