Book recommendation...
- Thread starter Tay
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Sarah, you started the LOFFLEX diet? Or the liquid diet, perhaps? Either way, let us know how you do! I'm excited to hear what you think of it! 
The book seems pretty cool thus far, and I will admit that although the general diet is pretty strict, it can gradually get less so (food tolerances permitting -- your mileage may vary), I really like the idea of adapting to that rather than SCD or Paleo. That said, I'm sure it's bound to be challenging as well.
If it turns out that Pentasa and budesonide don't do the trick for me, I might try talking to my doctor about whether or not she's supportive of me trying this as the next step. US crohnies -- have any of you had any luck getting prescribed elemental nutrition drinks? It certainly would be nice to get something on the cheap, rather than picking up six-packs of Ensure at retail price. Not sure how that works here.
The book seems pretty cool thus far, and I will admit that although the general diet is pretty strict, it can gradually get less so (food tolerances permitting -- your mileage may vary), I really like the idea of adapting to that rather than SCD or Paleo. That said, I'm sure it's bound to be challenging as well.
If it turns out that Pentasa and budesonide don't do the trick for me, I might try talking to my doctor about whether or not she's supportive of me trying this as the next step. US crohnies -- have any of you had any luck getting prescribed elemental nutrition drinks? It certainly would be nice to get something on the cheap, rather than picking up six-packs of Ensure at retail price. Not sure how that works here.
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JDTM, do you mean me or SarahDub?
I have to say my life has been a bit of a roller coaster ride over the last 3 months with elemental and LOFFLEX. I started an elemental diet with Elemental 028 Extra back at the beginning of February this year. This was after a flare which had been going on for 7 months by that time, so I was in quite a bad way (my main symptom is abdominal pain and I don't tend to suffer too badly from diarrhoea or nausea). I saw an improvement in my energy levels within 2-3 days of starting the elemental diet, but it was a further 3 weeks before I even saw a slight improvement in my pain levels. My dietitian recommended I start eating again after I'd been on the elemental diet for just short of 4 weeks. In hindsight I think this was too soon as my symptoms hadn't completely settled down by this point. I followed what I was told and started eating foods from the LOFFLEX diet. At first I had a little bit of pain return (I've been told this is normal) but then it settled again. My pain was still there but wasn't getting any worse. Unfortunately I then went away with my department at work and I ended up unintentionally eating something I shouldn't have done which resulted in a huge amount of pain and diarrhoea (which as I said above, D is unusual for me). Things settled after a few days and were getting really good, my pain levels weren't too bad at all. After I'd been on the LOFFLEX diet for 2 weeks I had an MRI and the bowel prep I was given triggered another massive flare. In the two week period after the MRI things got worse and I very nearly ended up being admitted to hospital. I ended up going back on the elemental diet, which I have been on again for 2 and a half weeks now. Today is probably the best I've felt in a long time, I'm still getting some mild pains but it's such a big improvement on how I was before I started the diet. I'm due to re-try the LOFFLEX diet at the end of this week and I plan to be very strict about what I eat to avoid the problems I had last time.
I really wanted to try the full elimination diet, also detailed in John Hunters book, but my consultant wasn't too supportive. Fingers crossed the LOFFLEX diet will be more successful but I know of several people who relapsed on the LOFFLEX diet.
I haven't found sticking to the elemental diet or LOFFLEX diet that hard. For me, I was in so much pain that I had a strong motivation to stick with it. It was tough to start with, but now it's just second nature. I still struggle with strong food smells and of course I sometimes miss being able to eat whatever I want, but it is definitely easier now. I also had quite a few questions about my diet at work, which I was quite sensitive about at first, but now I can joke about things.
I'm also on Pentasa, which had been my maintenance drug for probably 8-10 years (with occasional flares treated with prednisolone). This last flare felt very different to me so I suspect my Crohns had moved, as it used to be in my colon and at my last scope my colon was clear but my terminal ileum was inflamed. If diet doesn't work, my next step is Azathiprine which I'm not keen on to be honest. I think if diet can be used to successfully control symptoms then it has to be better than using drugs. The strict diet definitely is challenging but if you have the motivation and will power it is possible to stick to it.
I'm in the UK, so can't comment too much on availability of the elemental drinks in the US, but I've read of several people in the US who have tried this method. Try having a look under some of the threads under the Enteral Nutrition sub-forum.
If you have any other questions please feel free to ask or send me a private message.
I have to say my life has been a bit of a roller coaster ride over the last 3 months with elemental and LOFFLEX. I started an elemental diet with Elemental 028 Extra back at the beginning of February this year. This was after a flare which had been going on for 7 months by that time, so I was in quite a bad way (my main symptom is abdominal pain and I don't tend to suffer too badly from diarrhoea or nausea). I saw an improvement in my energy levels within 2-3 days of starting the elemental diet, but it was a further 3 weeks before I even saw a slight improvement in my pain levels. My dietitian recommended I start eating again after I'd been on the elemental diet for just short of 4 weeks. In hindsight I think this was too soon as my symptoms hadn't completely settled down by this point. I followed what I was told and started eating foods from the LOFFLEX diet. At first I had a little bit of pain return (I've been told this is normal) but then it settled again. My pain was still there but wasn't getting any worse. Unfortunately I then went away with my department at work and I ended up unintentionally eating something I shouldn't have done which resulted in a huge amount of pain and diarrhoea (which as I said above, D is unusual for me). Things settled after a few days and were getting really good, my pain levels weren't too bad at all. After I'd been on the LOFFLEX diet for 2 weeks I had an MRI and the bowel prep I was given triggered another massive flare. In the two week period after the MRI things got worse and I very nearly ended up being admitted to hospital. I ended up going back on the elemental diet, which I have been on again for 2 and a half weeks now. Today is probably the best I've felt in a long time, I'm still getting some mild pains but it's such a big improvement on how I was before I started the diet. I'm due to re-try the LOFFLEX diet at the end of this week and I plan to be very strict about what I eat to avoid the problems I had last time.
I really wanted to try the full elimination diet, also detailed in John Hunters book, but my consultant wasn't too supportive. Fingers crossed the LOFFLEX diet will be more successful but I know of several people who relapsed on the LOFFLEX diet.
I haven't found sticking to the elemental diet or LOFFLEX diet that hard. For me, I was in so much pain that I had a strong motivation to stick with it. It was tough to start with, but now it's just second nature. I still struggle with strong food smells and of course I sometimes miss being able to eat whatever I want, but it is definitely easier now. I also had quite a few questions about my diet at work, which I was quite sensitive about at first, but now I can joke about things.
I'm also on Pentasa, which had been my maintenance drug for probably 8-10 years (with occasional flares treated with prednisolone). This last flare felt very different to me so I suspect my Crohns had moved, as it used to be in my colon and at my last scope my colon was clear but my terminal ileum was inflamed. If diet doesn't work, my next step is Azathiprine which I'm not keen on to be honest. I think if diet can be used to successfully control symptoms then it has to be better than using drugs. The strict diet definitely is challenging but if you have the motivation and will power it is possible to stick to it.
I'm in the UK, so can't comment too much on availability of the elemental drinks in the US, but I've read of several people in the US who have tried this method. Try having a look under some of the threads under the Enteral Nutrition sub-forum.
If you have any other questions please feel free to ask or send me a private message.
