Hidradenitis Suppurativa and accepting change.

I am pretty adventurous and I like to think I embrace change. Realistically though, like most people when met with change, I tend to fight it with every human instinct I have, wildly clinging on to the edges of ever-decreasing comfort zone. This post looks at how I dealt with the change that Hidradenitis Suppurativa inflicted upon me, but also how I managed to take some control back and (eventually) start to embrace the change….

When I was diagnosed with Hidradenitis Suppurativa, I had no idea what the impact would be on my life. If I could have speculated and based on my earlier experience with mild HS, I would have said that there would be a few changes. I'd be on the occasional course of antibiotics, in a bit of pain from time to time and a little bit restricted as to what I could do, when I had a flare (less cycling, running, sex etc!).

Two years on and things changed way beyond that. The pain was worse than I ever could have imagined. The restrictions were more than just cutting back on a bit of me time. I was actually, physically disabled for a lot of the time. The medication? Endless searching for homeopathic remedies, horribly strong pain killers and eventually (reluctantly) some of the strongest antibiotics you can get and taken for a whole 10 weeks. This was change with a capital C.

However, the biggest change that came about was the one that surprised me the most. A complete change in diet. Not just a little change. I'm talking an entire overhaul of everything I ever used to put past my lips. It was the time I discovered Tara Grant at www.primalgirl.com and an introduction into the wonderful world of Paleo eating. She spoke openly and candidly about how changing the way she ate cured her of her HS and she put me on the path I'm on today. Bless you, T!

Like all of you out there with Hidradenitis Suppurativa, I was ready to try anything to get rid of this nasty disease, but change my eating habits?? What about my repertoire of family meals? What about the fact that so many things we ate as a family were based on a pasta/rice/potato dish with a tomato/chilli pepper sauce? What about breakfast? I mean, who really has the time to cook breakfast everyday and there's no way I could eat a salad for breakfast! Could I? What about the days and nights I didn't want to cook? I mean we had just moved countries three times and occasionally the stress and limited kitchen space called for a pizza take out. What would we do instead?

To say I was overwhelmed was an understatement. Yes, I wanted what Tara had, but how would I navigate my way through something so life-changing? Her claim that a group of foods called Nightshades were a major contributor to HS flares was a little bit too much. I made a decision to take some of her advice, but tweak it to suit me. I am special after all (aren't we all).

I also decided the autoimmune protocol (AIP) was also too restrictive for me. With bread and cereal out of the picture, I was clinging onto eggs as a staple for breakfast and the thought of going without eggs was just too much. I compromised a little and gave up raw tomatoes, potatoes, bell peppers and chilli. I then spent a long while familiarising myself with all aspects of the Paleo diet.  

I saw improvements straight away and I went from being in a lot of pain daily to having occasional days where there was hardly any pain at all. My flares were fewer and so much less swollen. It made such a difference to my quality of life and for that I was grateful; but I wanted remission. Unfortunately, I was not fully on board with the diet (it's freaking hard!) and I was starting to get overwhelmed by all the research I was looking at on the net. I was trying turmeric, homeopathic medicine, new dressings, potions and lotions. I was wondering if I had a leaky gut and if what I was eating was making it worse. I was beating myself up at every corner and every time I had a food lapse, it seemed like the end of the world. It was tough and I wasn't anywhere near remission. Looking back now, I see that I was finding it hard to face the reality of the changes. To be on a diet is one thing, but to be faced with eating in a certain way for the rest of your life – well, it was going to take some getting used to.

During the spring I had so many food fails and my HS got out of control. I was abroad, out of my kitchen, out of my comfort zone and despite the pain, I was having a great time socially. My HS became unbearable again and I was reminded of the misery I used to suffer pre-paleo. I was desperate and went to see my doctor for some help. He asked if I would try the antibiotics that the dermatologist had prescribed the December before. I agreed. Pain can make you do some crazy sh*t, right?

Annoyingly, I got remission from taking antibiotics, but actually, the diet really helped. Even then taking the antibiotics, certain foods would continue to make me flare, albeit more mildly. I stopped my antibiotics in August. I am still on the AIP and what used to be an area of up to 30 weeping, open sores is now healed up with the occasional small flare. No long-term open sores makes it a lot easier to determine which foods or situations are making me flare. I even noticed that when stressed, my flares worsen and then go down once I've chilled out (all in the space of a few hours). This was something I could never fully pin-point when the sores were all open before. My life changed enormously and apart from the pain HS brings, everything else changed for the better. Plus I've lost over 35lbs and am now 117lbs/53kg/8 stone 5lbs – a weight I have not been since I was about 11 years old – I kid you not!

So many people with Hidradenitis Suppurativa are now finding out the benefits of this way of life – I say a way of life, because it is not just a diet. It is our whole life. It is addressing our emotional attachment to food. It is a complete rejection (for most of us) of anything we have ever learnt about food. It is challenging our parents' and families' nutritional beliefs. It is an adjustment to accepting that our bodies react to food in a way that we never knew was possible. It's explaining on a daily, sometimes hourly basis, why we can't or won't participate in meals prepared by our friends, families, co-workers. It is not only convincing the world we have to live differently to them, but it is believing it ourselves – so wholeheartedly, that we can stick to it in order to heal our bodies. It is re-establishing our life structure, where we prioritise large chunks of our time, to food and food preparation on a daily basis. 

It is, therefore, no surprise that committing to making these changes can be ferociously overwhelming!

As a few people have asked me how and where to start, I kept a few notes. In my next post, I list many of the things that have helped me and that I believe could help you, if you are just starting out. It is not meant to replace all the information you can get on AIP/paleo experts' sites, but it is a way to formulate a plan to get started. 

It is a good time to reiterate that if you are making any major changes in your diet, you should see a medical professional first.

See you very soon! A bien tôt!



Filed under Autoimmune DIsease, Diet, Flares, Food, Hidradenitis Suppurativa, Nightshades

2 Responses to Hidradenitis Suppurativa and accepting change.

  1. Claudia

    Were you able to bring back eggs after some time without them? I think they are ok for me, but after not eating them for so long, I'm not as into them as I used to be, lol. What are your triggers? NIghtshades are terrible for me, although I seem to do ok with tiny amounts of cooked tomato sauce/paste or ketchup (as in a teaspoonful). Raw tomatoes, on the other hand, do me in completely.

    • Leila

      Hi Claudia,
      I can only eat egg yolks – the egg whites cause me to flare. My baby only likes the whites, so I fry them and peel out the yolks for me – that way I can be sure to get all the white off!You should try them and see and if you flare, perhaps just try the yolk.

      Other triggers for me are nightshades (egg plant seems to be the worst and it was my favourite!), artichokes, almonds, walnuts, oats, yeast, green beans, pasteurised dairy (I can tolerate raw and fermented dairy), some vinegars, gluten, refined sugar (I can tolerate honey), high GI dried fruits (apricots) and I’m sure there are loads more that i can’t think of right now! I am like you, I can tolerate small amounts of cooked tomato sauce/paste (I wouldn’t eat ketchup unless it was homemade – vinegar/sugar may set me off) and I always make sure it is organic, because the pesticides/herbicides are a likely trigger for autoimmune conditions. After eliminating raw tomatoes, the reaction to them in my gut was bad enough to stop me eating them again, let alone having a flare on top of that!
      I’m still learning as I go and now my HS sores have all pretty much gone, it is so much easier to see what food triggers me off. Let me know how you get on :)

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