My Story

I was diagnosed with Crohn's Disease in November 2011.  I'm not the sort of person who goes to the doctor very often.  I look after myself, exercise most days and eat a very healthy diet.  I know I have to look after myself because if I don't I feel awful and have no energy.  I've had a sensitive tummy for a long time and thought I had Irritable Bowel Syndrome.  I'd never mentioned it on my rare visits to my local GP as I thought I had it under control.  Even though chocolate is my favourite food, I rarely ate sugar because it made me so tired.  I'm a busy working mum who needs all the energy I can get! It was the end of September 2011 when I knew my digestion was going downhill.  I was being really good with my food (carefully following the FODMAP diet for IBS) but was getting more and more diarrhea.  We keep a good supply of GASTROSTOP at my house but they didn't help in this case.
My family and I went away for a couple of days and I forgot to take my probiotic capsules with me.  I've been taking them for many years and know I really need them.  I thought it would all be OK.  While we were away I had a chocolate feast with my family.  I thoroughly enjoyed lots of different types while watching a movie.  Yum!  Heaven!  But a very rare treat for me.
By the time we got home from our little trip my tummy was very unhappy with me.  It was constantly and painfully bloated.  I've never had anything like it before.  I thought I must have some sort of tummy bug but generally felt OK.  After five days of this I also had severe diarrhea and a high temperature.  I called my local clinic but couldn't get an appointment with my lovely GP, so I booked an appointment with another doctor.  After an examination he said that I had Gastro.  He said there was nothing he could do and said it should go away soon. I spent my time sleeping, resting and only eating one egg, one piece of gluten free toast and one banana each day.  I was nauseous and going to the toilet more than 20 times per day.  A few days later I saw the same doctor again.  By this stage I had had these symptoms for 7 days and I was worried that something was seriously wrong with me.  I even had a cry in the doctor's office, I was so worried.  The doctor said again that it was Gastro and there was nothing he could do.  He did send me for blood and stool testing.  He said that if I didn't improve in a few days to come back.  I didn't improve so I went back and had to see a different doctor.  He prescribed some antibiotics and I was out the door very quickly.  The antibiotics really didn't agree with me and by the second day I realised that the stabbing pains I was experiencing in my stomach were from the tablets.  I stopped taking them and hoped they'd done their job.  I was still feeling horrible, sleeping lots and going to the toilet all the time.  The fever had broken and I thought I must be on the mend.  Several days later I was still feeling so horrible that I went back to the doctor and finally saw my usual GP.  She was horrified by all my symptoms and quickly referred me to the local GI.  She gave me different antibiotics and I hoped this was all coming to an end.  I lost 6 kilograms during the two weeks.  In the next few days I developed very painful joints in my wrists, knees and ankles.  My ankles swelled up like I'd sprained them but I assumed it was because I was dehydrated.  I hobbled around like an old woman but didn't go back to my GP for several weeks.  It took 5 weeks to get an appointment with the GI.  He told me he thought I had either Crohn's or Celiac.  I didn't want to believe any of it.  I remembered around 6 years previously that I'd had a case of diarrhea that lasted for weeks.  I didn't go to the doctor and eventually it healed itself up.  After I Googled caeliac and crohn's I realised that my symptoms were classic crohn's disease.
The GI scheduled an Upper and Lower GI Endoscopy which found cobblestoning and ulcers all through my colon.  The diagnosis was moderate/severe Crohn's colitis and the treatment recommended was prednisolone to begin with, followed by Humira and Remicade.  I was horrified.  A lifetime of relying on drugs was not something I'd planned for my future!  I was too busy to have to take time out every 8 weeks to have drugs intravenously put into my body!  I asked the GI about natural alternatives; he told me there were none and that this was the only way to stop my body attacking itself.  This didn't sit right with me because I knew I'd had a flare a few years before and healed up.  He said that was impossible and that if I'd had a flare I'd have scarring (which I didn't).  I spent a lot of time praying for which direction I should go.  I asked the GI if I could try something natural first and use these drugs as a last resort.  He said if I did that it may be too late to have them be effective if I became scarred etc.
My lovely GP was reluctant to be supportive of my plan to not take the drugs.  She had been closely monitoring my blood tests (they were very concerning) and she said I could try SCD for 6 weeks and we would see after the next blood test.
So I followed SCD and my GP was amazed at my blood test results after the 6 weeks- almost perfect. :) :) :)  I was so happy and relieved.  At the next blood tests after another 6 weeks they were perfect. :)
  I found that dairy doesn't agree with me, so I now follow a Paleo version of SCD. (No sugar, no grains, no dairy or legumes) and I feel better than I ever have.  I have loads of energy, rarely get sick and only have to watch my weight when I overdo the nuts and fruit.  
I'm so glad I've been on this health journey.  I've discovered so much about health and feel the best I ever have.  I pray that others will have the same success I've had in treating their IBDs.

23 comments:

  1. wow I have ulcerative colitis and I am jealous of your improvement! I am going on one year of SCD/paleo but was just in the hospital again flaring. now on prednisone and azathioprine. seems like it's never ending no matter what I eat. my diet can be perfect but my colon still hates me! I really hope you can be in a forever remission. these diseases are so debilitating and life altering and nobody deserves to have them.

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    1. If possible, try to see a functional medicine doctor who can run additional food sensitivity testing for you (Alcat has these) to find what else is troubling your immune system. My son has Crohn's and he tested positive to eggs, and once we cut those out (plus the dairy, grains and sugars), he had tremendous improvement. Sometimes even healthy foods can be a problem - flax, nightshade veggies, etc. You could also try figuring it out yourself by eliminating foods, but these tests and a good practitioner can make it easier. Good luck! I have had Crohn's colitis myself for 30 years and there have been lots of ups and downs, so hang in there. This diet has been great for me too, I just wish I had tried it earlier.

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    2. Also get them to do some gut tests for bacteria and parasites - surprising what turns up and could be a huge help

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  2. Congrats on the success you have had. SCD is great at controlling the symptoms of digestive disorders, but I found after time those symptoms slowly started to return as I was missing something else to heal my gut. I needed to replace the huge variety of bacterias/yeasts that inhabit a healthy individual, those that I hadnt received from birth or had been eliminated from years of stress, killing all bacteria in the environment and in myself with antibiotics. Probiotics are good but limited by what man is able to identify and then reproduce for sale. I recommend you look towards fermented foods and beverages for further healing, those used in traditional diets before we humans decided all bacteria was bad and that we should use refridgeration. best wishes and happy healing

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    1. Thank you for your comment. Yes, I think we still have a lot to learn about bacteria and the role they play in our health. I've had a go at making sauerkraut and making the scd yoghurt with non dairy milk is on my list if things I must do. I wish you all the best with your healing.

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  3. very good advice re: fermented foods! I've recently learned about that, too, after years of advice that I need "a good probiotic" and those pills never worked, trying brand after brand. The kvass and other ferments we're making are helping. Deb, thank you for your website, I love finding new recipes! I've battled Crohns for over 20 years - sounds like you've caught yours early enough. SCD alone worked for me in 2002, stuck to it 2 years. Kept trying to go back in recent years and just wasn't working. Tried again this year, and even with the intro diet - no. So kept searching and found out about the role of fungus in the body from jini at listentoyourgut.com and jim at worldhealthmall.com. I'm taking jim's products yeast control and healthy gut and finally seeing results along with SCD and Paleo. I'm also doing jini's oral and topical stricture protocol as I do have those according to my small bowel follow through. Hope that info can help others struggling as well!

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  4. Wow, in Aussie land, your GP suggested you try SCD!!?? I'm still looking for one to even be willing to converse/guide our journey on SCD. Happy to report though, that after 7 months on SCD, my daughter's eczema skin has finally improved dramatically. This has coincided with a dramatic improvement of her chronic constipation.
    Love your website. Thank you for sharing. All the best with your healing journey and God bless.

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    1. Hi Marisa, thanks for your comment. No, my gp didn't suggest SCD, I found it by googling and asked her if she'd be supportive if I gave it a try. She very reluctantly agreed to let me try it for 6 weeks, but told me I'd have to start the drugs after that if it didn't work. She'd never heard of SCD and is still amazed at my results. So glad to hear you found SCD for your daughter and that you are seeing results. Awesome!
      Thanks for your encouragement! Xx

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    2. Doctors don't want their patients to try anything natural, in fear that it may help you, and then they would not have your business. That means less cash for them, and the drug companies they support. Glad you listened to your gut (no pun intended), and tried an alternative treatment. You never need a doctor's permission to do what you think is right. It's your body and your life, not theirs. So happy for you !

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  5. It is so refreshing to come across your blog and I already follow you on Instagram. My teenage daughter was recently diagnosed with crohn's and she has been managing well so far. She eats very healthy, follows the SCD diet on occasion, researches recipes that are paleo and grain free and is pursuing Nutritional Science after graduation. I have also chosen to eat grain free for the most part and feel much better. There are plenty of good websites out there. I love the recipes you post and look forward to trying many of them.

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  6. I loved reading your story and thank you so much for sharing! My husband has been dealing with severe stomach issues and GI issues for 8 years now and it has finally gotten to the point where he has to take control of his diet. His job won't allow him to take medication so I am encouraging him to start the SCD diet. He is skeptical of course and not excited (he eats horribly) but I know if he just tries it for 6 weeks he will see the improvements and be amazed at how much better he feels! Thank you for giving us both an glimmer of hope in what seems a dark dark place.

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  7. Thank you for sharing your story! I was diagnosed with Crohn's this past summer and I am trying to fight it the natural route. I'm currently doing SCD, but without cows milk products or beans. I am also limiting my carbs to 72 grams or less per day, as per Life Without Bread. It is slow going, I thought I was seeing improvement, then just had a bad weekend. My doctor wants me to start medications, but I think I'm going to try and fight it with diet a little longer. Reading accounts like yours are helpful and inspiring!

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    1. Thank you, Donna. I pray you can find healing with SCD. If you can find a functional medical doctor or naturopath to support you, it may help. There are so many variables they may be able to help you with. Xx

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  8. Hi Deb
    I was diagnosed with Crohn's disease when I was 23 back in 1990. I too was on prednisone for 3 years, until my large bowel burst. Thank God I was in hospital at the time, my surgeon was called out at midnight to perform surgery. They removed the entire large bowel that was riddled with ulcers and a small section of small bowel so they could test it. I was one of the lucky ones to find out I only had Ulcerative Colitis, which only affects the large bowel. With the large bowel now gone, I had a colostomy bag for 7 months before they did 'J' pouch surgery on the small bowel. I am now 48 and I have been on Gastrostop capsules and Psyllium Husk powder for 25 years. I still get diarrhoea (but not as bad) and I feel I am very lucky compared to others I met 25 years ago. I have never taken the time to see if changing my diet would help, I always feel tired and have lately put that down to the amount of sugar I have. I'm glad I found your website, it has given me inspiration to take up the 21DSD. Thank you.

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  9. For all those in Melbourne having issues, there are a number of interpretive GPs (NIIM in Hawthorn and one in Moonee Ponds) that will listen and prescribe natural cures FIRST. I have endocrine issues and eat paleo. So much better, even my thyroid function has started to stabilise.

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    1. Contact www.aima.net.au for a list of Dr's who are Integrative Practitioners. I have been seeing an Integrative Dr for six months and still find it hard to believe how much my health has improved and to date he has only suggested three supplement because of low readings on blood test and a diet change. My family are surprised by my improved health, as am I. Ruth

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  10. I have Crohns, it has destroyed my life as I knew it as I no longer work after decades of great jobs, and I also have developed other immune system illnesses the worst of which gives me arthritis-like symptoms leaving me quite disabled some days. I also experience depression and anxiety and sort of live on the edge with that taking each day as it comes. Drs want to put me on more drugs as I'm not in remission and haven't really been for 4 years now. In desperation have been looking for ANY way to treat this thing without drugs. So ... I started compiling a Paleo recipe book (up to page 570 now LOL) and ran across your site as a recommendation from another and saw the word CROHNS and thought OMGosh! I feel very encouraged and with the help of my ENORMOUS recipe book I'm hoping I can deal to the crazy way my body is behaving as it reacts to modern living. I am even thinking (I don't know how yet) of getting out of the city (Auckland NZ) Thanks for the encouragement - Jenny

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    1. Hi Jenny. Thanks for your message. How wonderful that you are trying natural alternatives for your crohn's. I pray you find healing. Xx

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  11. Recently found your blog and I'm enjoying read through it! Wanting to try several recipes over the next week or two. DH has had Ulcerative Colitis for approx 30 years. My new GP who is into integrative medicine told me about SCD. DH is seeing some improvement in only two months. Only wish DH (and my old ) GP would be more willing to practice in a more holistic manner. Ruth

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  12. Hi Deb, great to read through your blog and discover your SCD recipes...I was also diagnosed with a form of Crohnes a couple of years ago and was strongly advised to begin taking usual prescribed drugs. The only other option my doctor gave me was a pure Ensure liquid diet. I followed this diet for 3 months without any food and for the next couple of months ate one meal a week and monitored inflammation levels. My following MRI results showed this worked quite well clearing up a fair amount of the ulceration but it was not sustainable. After reviewing my situation I decided to go against doctors orders and I threw myself into the SC diet 100%. To cut a long story short, it has been a success for me, after 7 months another MRI showing more healing more effective than the liquid diet....My doctor is amazed with my results and healing. If anyone is considering doing the SCD, I say do it and please do it with a 100% commitment, it has worked for me and has worked for many others.

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  13. Congratulations on this lovely website. I was diagnosed with Crohn's in 1996 and found out, very quickly, that diet and probiotics helped much more than any medication. I have only had to resort to prednisone one time since that terrible beginning, after a c-section. Doctors said then that I would lose my colon. After three weeks on SCD all inflammation vanished. My doctors never believed me until they saw blood and biopsy results. In fact, in 1997, when I went to the Mayo Clinic, I was told that "leaky gut syndrome" and probiotics were "new age garbage!" But now I am dealing with a young daughter showing Crohn's symptoms. This is MUCH more difficult than staying self-disciplined myself. I am looking for any way to make her feel better without having to go on Remicade. SCD is so very difficult for her. And she can't have eggs or dairy.... I will be trying your recipes! Thank you!
    Nicole

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    1. Hi Nicole,
      Thanks for the encouragement and for sharing your story. You were ahead of the times!
      I hope your daughter finds healing.
      Xx deb

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  14. My daughter, 9, was just diagnosed with Crohn's. We are on meds but are also going through Alcat and other tests with a functional med dr in hopes of getting her off meds. This is overwhelming as she loves eating EVERYTHING she shouldn't have, so I am using the next few months to introduce her to healthy alternatives to what she loves in hopes of getting her to want to help herself feel good with the foods she eats. The above comments sound like they were written about our life, and find comfort in hearing others stories. Thanks for sharing, and for the recipes. I plan to come back here often to see what's new.

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