Thank you for your website Adam, and for my Remission

I’m Mathilde, I’m 29, French. I’m a PhD student in Psychology. I wanted to share my story with you because it’s first coming across this website that I learnt about the SCD diet. It’s been 7 months I am following it, I have been free of symptoms since September. I have no doubt the diet help me and I don’t see a better way to thank you than to share how it went for me. I hope this will help those who currently encounter the same nightmare.

Some more about me: I enjoy hiking, horse riding and playing guitar.

Current Symptoms: I have Ulcerative Colitis but currently free of symptoms.

My Ulcerative Colitis Story:

First, all of this started with a parasite infection in August 2018. I was found with Anasakis parasite after the consumption of raw salmon (homemade type). Although, it seems I had IBS before.

After a long antiparasitic treatment, my symptoms stabilized but soon it all started again (lots of blood, cramps and shap pain in places, tenesmus, muscle weakness,etc. you know them). I couldn’t even go to my office anymore (500m from the house).

I was diagnosed with UC early December 2018 and got prescribed Pentasa and Prednisolon for 8 weeks. The treatment relieved me very quickly, and by the end of January 2019 I was feeling great, with only some bloatting problems.

In February, I cut off gluten of my diet because I felt especially bad when I would eat something wheat based (such as a croissant or similar things) my belly would triple size each time (I kept a food diary). I was only taking Pentasa 2g/day at that stage. I also stopped lactose thinking it could perhaps help too.

Although, after a period of acute stress in March I felt symptoms were coming back again. Maybe it’s just a coincidence, but I don’t think so! Despite what doctors said. In April, I had it all again and was in tremendous pain. Doctors increased my Pentasa dosage to 4g/day. After a week of that, I had back pain, headaches, was unable to feed at all and felt just so terrible that I decided to stop everything. I fasted for 3 days. Only drinking lots of clear soup and a little avocado and olive oil and I felt much better! Even my bleeding had stopped by the 4th day on which I could finally see another doctor.

The doctors said that I might have became intolerant to Mesalazine (Pentasa) and so they decided to start me on Adalimumab (Humira) at the end of April 2019. I got the first injections. For two weeks, I was not improving at all and still felt very crappy so then they prescribed me an other course of steroids.

About that time, I got suddenly really scared, I had only been diagnosed and was already on the second course of action of treatments. So I started to searched for other kinds of approaches to the disease. I read about the SCD and started to implement it. I was eating solely some chicken or salmon (very well cooked!!), zuchini, and carots, and veg soup for many weeks. But to me, these still are the best meals ever, since I had finally found some food that felt bearable.

This was a scary time because my symptoms where still active although slowly getting better. A dietician had advised me in the meantime to only eat pasta and rice for 3 weeks at least!! I could not do that. I felt this person was a fool and I started to solely rely on my “gut feeling” (this expression make a lot of sense for me today!). I followed my own instinct, and it was telling me to try the SCD, along with the treatment. I was 57 kilos before and by the end of June I had lost more than 8 kilos. I was really friking out then and I nearly gave up on the diet.

I decided to take a long break from my studies over the summer and autumn in order to focus on getting better. By the way, summer is a super convenient time to start on this diet! And finally, by doing enough resting and feeding, I regained some weigh, some strength, and some muscles. I followed the SCD diet very scrupulously, the only exception is that I would take a tiny bit of cashew nuts and almond butter (and also some dates and cashew nuts bars) after a feww weeks on it in order to help with the calories intake.. But only a little bit here and there, preferably along with other gentle food and making sure to chew as much as requiered. Also, I would drink fruits and vegetable juices that I made myself from a juice extractor every morning.

I also got rid of all my stress factors including big life changes (I was living in Ireland and I decided to go back to France). I took up yoga, and worked hard on my psychological heath. I have also been to several types of alternative medicine (osteopathy, magnetism). All at once, because that’s what you do when you’re deperate. So, I am not really sure of what exaclty did it for me, maybe all of them.

But the important thing is that by the end of September, I was having no bloatting, no pain. All was normal again if I avoided the food that caused me trouble (for instance, it took me weeks to figure out that I couldn’t bare bananas and raw apples… ). Then, I had a sigmoidoscopy at the end of September, and the doctor said that by the look of things, my physical health and the results of the biopsies, all was so perfect that if we didn’t know I was so sick a few months before they wouldn’t never have guessed that I was.

The doctor could not believe that I would be part of the 10% of people reacting extremely well to the Adalimumab treatment knowing that I wasn’t even on it for 6 months yet. So, their explanation was that they had doubts about my initial diagnosis (believe me, there wasn’t any doubt back then!!!). Anyway, they preferred to stop the treatment saying that it seemed useless to carry it on at this stage. So we are keeping an eye on it now, to see how it evolves over the next few months.

horseback riding on beach
Riding horseback beachside


Today I am free of symptoms and I regained 4 kilos. I stopped my treatment nearly two months ago and I am still feeling great. I actually have never had so much energy in my life!! I carry on the diet with some exceptions here and there. I can drink alcohol and cafein with moderation. AND I started my studies again. I just wanted to say that no one will know your guts better than you, and it’s vital to listen to your inner feelings and feedback. Maybe I just got lucky, I guess we’ll see. But please don’t lose hope because things can change quickly in a better way.

Thank you to all of you who wrote posts on this website and convinced me that this could work for me. I’m forever grateful. <3

Medications, Supplements, Diets and whatever I’m doing right now to treat the UC:

I tried aloevera juice, I’m still not sure how much it helpt me or not. Research seems to be divided about it. But that’s definitely not what helped me in the past few months.

I drink a homemade orange juice (2 oranges, 1 lemon) every morning and I add a spoon of Baobab powder, it seems it has healing vertus (I have been taking it for 5 months). I feel this is helping me a lot. (Organic Baobab Powder (from iHaveUC’s Amazon Affiliate link))

written by Mathilde H

submitted in the colitis venting area





Baobab powder, diet, SCD

12 Responses to Thank you for your website Adam, and for my Remission

  1. Adam
    Adam December 3, 2019 at 11:23 am #

    Wow Mathilde,

    Pretty wild ride you’ve been on, and cruising beaches on horseback…:))

    Incredible and Tre Bon…

    So happy to hear from you, and to hear your story. Way way cool.

    Keep up the positive thinking and good job on you for listening to your body and going from there. Way to go!

    I hope many others will read your story and feel something inside of them that helps them make some positive changes if they are in a tuff spot at the moment.

    Best to you and bon voyage,

    Adam

    • Mathilde H
      Mathilde H December 4, 2019 at 2:40 am #

      Thank you for everything Adam. Très bon indeed!! <3 <3 <3

      I carry on everything I do and fingers crossed that's all that it will take. :)

      Best of luck.

      Mathilde

  2. Meevar December 3, 2019 at 12:16 pm #

    Your story is inspiring!!! After 5 years of being diagnosed with UC, 2019 seems to be the year I seem to have things under control.. however I’m a little skeptical, because yes all is well but I am currently on a lot of meds. And I’m afraid if I stop things will go back to bad, However I also do not want to be reliant on solely medication to be symptom free. This thought scares me! If there’s any advice on a way forward, I would highly appreciate it.

    • Mathilde H
      Mathilde H December 4, 2019 at 3:33 am #

      Dear Meevar, I’ll do my best to answer with my short experience. I started to be treated for UC in Ireland (where my PhD was based) for my first crisis, then I moved to Denmark (for the PhD again) and I got treated there for my second crisis, then I went back to France.

      So, I met several gastroenterologists in Europe, and I feel this really helped me to figure out different approaches to the disease. For instance, my gastroenterologist in Ireland was very excited about that diet and was going to start research on diet and the microbiota.

      Back in France, I met a first gastroenterologist who basically laughed at me when I explained that my second crisis started after an event that caused me a lot of stress. I didn’t trust that person for many other reasons. They told me that I was going to be on this medicine probably for life and I refused to hear that. So, I looked for another gastroenterologist specialised in UC and I found one that is a professor as well (so doing research). We had a very interesting interaction, he didn’t think that stress or a diet change could influence my symptoms, but he was very respectful of my experience as a patient and very humble, solely supporting the currently scientific knowledge (as he should).

      I don’t know your experience or what you have been through to get where you are, but the only thing I could recommend is either to find a specialist that you really trust, or to get an alternative opinion on your case (or several). You don’t belong to a doctor, it is your health at stake so it’s in your hands, not in theirs.

      Maybe you should go see another specialists and make sure you understand why they recommend you staying on all the medicine you are. I was advised to stop my treatment solely because they became unsure about the initial diagnosis (because it so recent). But since you have been sick for several years, I still think only consulting with a UC specialised gastroenterologist could advice you best on what is the next course of action for your case. My gastroenterologist really reassured me back then on the secondary effects of Adalimumab. But of course, I understand very much that it is frustrating and scary all these meds.

      The way I see medicine is to get me out of crisis. But I try to do anything on the side so that my body recovers a normal functioning. But again, I got lucky in some ways, I don’t think I would have taken the initiative myself to stop the treatment, not yet anyway.

      If the secondary effects of the treatment bother you in anyway, the best is to ask all the questions and find someone who can bring you suitable answers. For instance, I asked my French gastro (the good one) why I should carry on the treatment if in the next few months everything was fine. He said that it was because Adalimumab takes up to a few months to be fully active, hence there is no way to take it here and there, it’s a long process with dosage adjustments. Also, he said that if inflammation was not kept under control, things could go very wrong when my next crisis occurs and that it could be much harder to manage it than if I had kept it under control (even lead to surgery..). So, I was happy with this answer because he really knew what he was talking about and conveyed it in a very respectful way. Also, he didn’t discourage me to try anything else on the side.

      Beside the diet, I feel my psychological health helps a lot too. The first job was to accept my condition, accept that I am sick, and sort of be grateful for it because it was pushing me to change things in my life that I wouldn’t have changed otherwise. But I also strongly knew this was a temporary thing. It had to be. For me, my body was expressing that “something wasn’t getting though and that was ripping me inside ”, hence I started to work a lot on personal development and on reconnecting with my body.

      Hope, this helps…. Good luck to you.

      • Meevar December 8, 2019 at 10:38 am #

        Hey, thank you so much for your reply! I shall give the book a try, however one curious question, what type of foods do you eat, as majority of the foods are “illegal “

    • isaac December 4, 2019 at 10:58 am #

      Thank you to Mathilde for your positive posting,your story, it give me some hope. I am tired of trying different medications and nothing seems to work for me.
      Stay healthy and happy
      Javier

      • Mathilde H
        Mathilde H December 5, 2019 at 2:30 am #

        Good luck to you Isaac. <3
        Do everything it takes. Don't lose hope.

  3. Mary C December 4, 2019 at 7:59 pm #

    Thank you Mathilde. It is good to know that there is a possibility of a way through this. My question is at what point did you stop with the medication? Or did you taper down slowly? I have been on the mesalamine for over 4 years. I am currently on monthly Entivio infusions as well as 4 x 1.2 gm of mesalamine tabs daily. I have tapered down to 3 tabs a day in the last 3 months with no change. I honestly don’t know if the mesalamine is working anymore as I still am having mild cramping and blood. The Entivio I have just started about 3 months ago after a Remicade “fail” treatment. I also feel that my diet has a lot to do with my health and was looking at the SCD diet or a “clean” diet. I appreciate your opinion. Mary C

    • Mathilde H
      Mathilde H December 5, 2019 at 2:58 am #

      My doctor decided to stop my treatment. Because I had been on it for less than 6 months and already in remission. While with Humira, it seems that only 10% of the patient get such a good response, but only after 6 months of treatment. Hence he didn’t think it was likely that it was my case, and is now questioning the initial diagnosis. But believe me, I was so ripped inside back then that there was NO DOUBT on my initial diagnosis. It’s just because I got diagnosed in Ireland and my French doctor now is questioning the diagnosis I got in Ireland. I stopped all at once, not tapping it down.

      For me there is no doubt that it’s my life change, all together, that allowed me to get better in the long run, the treatment was there to help while I get there, but not the final solution. Slowly, I finally started to listen to my body, or rather to hear what it was telling me, listened to my emotions, and I am sort of devoted to both of them now. Few months ago, this seemed impossible to me. I attacked that thing on all fronts, I consulted with a psychologist practicing humanistic hypnosis, various alternative medicines (osteopath, etc.). AND the diet, was the start that triggered all these life changes. I feel I’m a different person. The microbiota can influence a lot on people’s psychology, there are now scientific studies on this.

      My opinion would be to try if the SCD diet can work on you. There are ways to introduce the diet with steps that are important to not overlook (for instance avoidance of nuts at the beginning). Maybe try to find on internet the way to introduce it and follow it as best as you can. I see that the “clean diet” recommends eating complex carbohydrates, this is incompatible with the SCD diet. To break the “vicious cycle” you should avoid all sorts of complex sugars, and complex carbohydrates are complex sugars. That’s what I did, and I feel so much better on this diet now. The SCD diet is drawn from a book “breaking the vicious cycle” by Elaine Gottschall. I didn’t read it fully but that’s the theory on which it is based, you can read about it online. Also check out this website: http://www.breakingtheviciouscycle.info/legal/listing/
      I were you, I would try the SCD diet along with my medication and see where I get from there. Hope that’s helps. Good Luck to you. <3

      • Mary C December 7, 2019 at 5:25 pm #

        Thank you so much! I actually have this book and will start “breaking this vicious cycle”! Appreciate the insights!

  4. Katie December 5, 2019 at 2:44 pm #

    Hi Mathilde, my name is Katie , I am 29 also and have had UC for about 5 years now, thanks for posting your story ! I can relate a lot with all of it. I have many times mustered the energy to change things but then I sort of get tired of it all and give up. Thinking things wont get better. But I know it can and I just have to have faith and the right support and diet and mindse and yes connection (reconnection ) to my own body. I havent given the SDC diet enough of a chance but I will now bc I’m truly running out of options! So thanks again jist for sharing because its given me the inspiration to start again . Xo

  5. Nora Marks December 7, 2019 at 6:53 am #

    Re: the advice for a pasta and rice only diet!!!! (insert scream face emoji here…) So glad you listened to your body and not the well meaning but uninformed!!

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