Working my way back to AIP. Again.

It’s been well over a month since I finished my antis and I have a few flares on my unmentionables. They are at the front, so don’t rub when I walk and I’ve actually learnt to accept them. I realised that just because I am having a flare, it does not have to mean I am a failure or that it is game over. It is just part of my life and if it pops up in an area that doesn’t cause me too much grief, I’m happy with that!

I really am trying to be good. I had been writing a food diary religiously and I do plan to get back to my nutritionist doctor. I have ordered more Bactivit and more Permeaprotect and have been taking it all as advised, along with cod liver oil. Do these things work? Who knows?! 

Going back to AIP eating is a tough call. The best part is that eating mostly paleo/AIP for the past two years means that jumping back in the saddle is not too scary, although I can’t say I’m 100% back on board just yet. However, I rarely eat processed foods, so that’s no biggy. I never drink any sodas or fruit juice, so nothing to miss there. I have cut out wine for the past two weeks – I didn’t even drink when we went to visit some vineyards. It doesn’t take as much effort to say no anymore and I guess coming to terms with the longevity of the disease has stopped me being so emotional about having to be denied certain foods. That’s not to say I’ve got it cracked, but it’s just that if I look at where I was a year ago, it really has gotten easier and easier.

We currently have a freezer full of bones, carrot peels/ends and celery just waiting for my stockpile of stock to run low. We have a slow cooker ready to make the stock if it does get low. We have pork belly curing in the fridge ready to make the next batch of bacon. We have a bag full of measured out ground spiced pork sausage for breakfast. I have sliced onions and frozen them in weeks worth of portions, ready to use and peeled and halved all the garlic I need for the week. I have peeled and topped and tailed carrots in a tupperware in the fridge – easy for a snack or to use in my recipes.

We do all of these things as a family, which takes a lot of the effort out of them and even if I am in the kitchen prepping food, Mr B will be helping by entertaining Baby B or sorting out another meal and Ty will be folding washing or unloading the dishwasher. There is definitely about having a complete group effort that takes the pressure off and makes the whole thing much easier.

I am still battling with a bit of a sugar dragon. Tonight I caved and as I have a whole bag of beautifully ripe avocados, I indulged myself and made an avocado chocolate dessert using 100% unsweetened cocoa powder, organic honey, coconut oil and of course avocados all thrown in a blender and whipped up into chocolatey heaven. No reactions yet and even though it was a little avocadoey, I really could see how avocados can be used as a creamy substitute in puddings. I reckon if there had been another stronger flavour in there (mint perhaps?), I really would not have tasted the avocado at all. In any case, it was delicious and filling and not forgetting that if I was eating like any normal person, I would’ve just made one of the healthiest chocolate mousses out there!

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You say saccharose, I say sucralose.

So far – so good – the meal plan is working! It has been a success (with only one slip up –  a last-minute fresh pizza when the day ran away from us) and I feel good. My Hidradenitis Suppurativa is well and truly behaving itself. I am still taking my antibiotics and have the odd nap here and there, but mostly I’m much better. The doctor has prescribed some steroid cream for my feet and they have healed nicely.

I did have a little flare earlier in the week. I was a little shocked (and reminded of the horror of this disease) and experienced some pain for the first time in what seems an age. I couldn’t work out what had happened (it wasn’t the pizza, which was later on in the week and incidentally didn’t cause any reaction), so had to do a little rethink about my food consumption this week.

I saw a friend do this the other day – he asked his girlfriend what she had eaten yesterday and the day before. As she sat thinking really hard, I asked him why he had asked her that. He told me it was a remedy for hiccups. Thinking so hard made them stop. This isn’t relevant, but apparently it works and everyday can be a school day, right?

Anyway, I had to think about what I’d eaten, which was fairly easy, as I written it all over Facebook and this blog. A was a little baffled, as it had all been whole foods and not much fruit. Then I had a thought. My supplements. Uh-oh. Rookie error. Checked my French probiotics and – bam! There it was! Saccharose. In my probiotics. All white, innocent and promising to heal my little tum tum, when actually the devious little beggars were running around my insides causing chaos! Now, I had taken a little peek at the ingredients and honestly? I thought saccharose was a sweetener. Straight up. Totally confused it with sucralose. I just thought to myself that I’d forgo a little chemical toxicity to get the benefits of the probiotic. Silly, silly me. Luckily, I had only started taking them the day before and since I’ve stopped, little flare/leak has totally healed.

There have been no sh*t storms this week – a few minor issues, like our upcoming holiday to the UK being delayed because the car is still in the garage, but on the whole a good week. Also, I have concluded that pure sugar= instant flare, but fresh pizza=no flare. I’m sure that I would have to explore this further and whilst I’m not about to go out and eat a ton of gluten/dairy/nightshade laden foods, I am happy that the odd slip with certain foods may not be the be all and end all for my HS.

Meal plan recipe tonight is the wild prawns on the BBQ – yummy!

 

 

Antibiotics. Day….bleurgh…can I quit yet?

I am not a happy bunny. My tummy is getting worse and trips to the restroom have increased significantly. I am trying to deal with my Inner Hypochondriac, normal logic, a chaotic moving house schedule and a two-year old. It’s pretty tough trying to give them all some dedicated time, especially as mostly, I just want to sleep. I am fighting the urge to quit, but am being sensible and just increasing my fluid intake. Lots of lovely organic herbal teas, fresh ginger and lemon infusions and strictly no coffee.

I stopped taking Sauerkraut the day before yesterday and it is since then that my tummy has gotten worse. Coincidence maybe, as we are now Day 10 and the antibiotics may have just slaughtered all my good, internal gut bacteria. Or, who knows, perhaps the Sauerkraut really was helping? Obviously I’m back on it. A huge bowl at breakfast only to be told by Mr B that it makes more sense to have them apart from the antibiotics. I knew that really. Well, I didn’t, but it does make sense, so I researched it and it says, yes – at least two hours after the antibiotics. I’ve also just had a huge bowl of fermented raw whole milk yoghurt. I’ll eat some more Sauerkraut later. A little bit of overkill (‘scuse the pun), but I like to be proactive.

Whilst I was buying the Sauerkraut at the organic shop, I stopped to take a look at the probiotics. I couldn’t find any that weren’t in maltodextrin or didn’t contain other unsavoury ingredients. The main probiotic that they use here is Brewer’s Yeast, also know as Saccharomyces_cerevisiae and it’s ‘close cousin’ Saccharomyces boulardii (the strain often found in over-the-counter probiotics). I’m not sure if I should take this yeast. I am yet to find any conclusive, scientific evidence online that tells me which yeast is good, which is bad and whether or not I can take them with an autoimmune disease . I’ve found plenty of sites selling their yeast products, that state their yeast is fine, but I’ve been duped by the food industry for so long, there’s no way I would even consider this information advisory in any way shape or form! I’m sure the medical/scientific explanation is out there somewhere. Voila!

Despite my gastrointestinal distress, my HS is much better. It is less inflamed and hardly leaking at all. I had paprika and chilli flakes last night for the first time since going autoimmune and I did have a mild reaction. Nothing too bad, just more leaking and a little painful late last night and this morning, but it’s all calm again now. That’s one more food stuff I can cross off my list. I am not as sad as I thought I would be – there will be no mourning for chilli today. I’m sure I previously consumed enough to last me my whole lifetime anyway.

So life goes on. I won’t quit the antibiotics just yet and I will be taking it easy. Mr B tells me just to keep resting, so that makes me feel better about the whole thing. I do what I can around the house and whatever isn’t done can wait. As usual this methodology works well for me and I am being quite productive. In particular, I’m looking forward to a peaceful end of the day and making dinner tonight – pizza. Home-made dough bases for the others and a sweet potato or cauliflower crust for me with spinach, cured ham (cured with salt), raw cheese Comte, olives and capers.

Probably with a side of Sauerkraut.

Antibiotics. Day 4. Denial.

Humph. I’m only four days in and I am definitely experiencing two of the ‘indesirable’ (the French word) effects. My tummy is not its usual happy self and I no longer have to work out what they mean when they describe the type of bowel movements the tablets can induce! Secondly, my tummy is in a permanent bloated state. Not in a painful way, but in an aesthetically displeasing way. In other words, yes, I look pregnant. Rubbish.

Did Grok drink Kombucha to wash down his antibiotics...?

Did Grok drink Kombucha to wash down his antibiotics…?

So, I am sipping my Kombucha (is it Paleo – who knows?) and wondering what path of probiotic action I should take next to settle my tummy gripes. The evidence seems to point more towards the fermented dairy, so I may go back to the organic shop and pick up something fermented. I believe they had sheep, goat or cows’ milk fermented into various types of yoghurt and kefir. By far the cheapest product I saw at around 1.50 euro was the cows’ milk kefir, but I guess in this case, it’s more about quantity. If I buy the yoghurt, how much should I have? Is this going to mess with the autoimmune protocol, as it’s dairy? Will it even stop my poorly tum tum?

I’m still feeling a little flat. A bit impatient and a bit bleurgh…like nothing is interesting or satisfying. The whole using antibiotics process is still a change I have to get used to, I suppose. Plus, I’m back at the beginning of slaying my sugar dragon, so that doesn’t help (should I stop drinking Kombucha??)

What of my HS? Well, it is surely too early to say, but….I’m not in as much pain and I’m not leaking as much. This could be down to clean eating though, which I have moved back to since the holidays have ended. I’m sure my body didn’t notice that I had two small slices of raw milk Tommes cheese yesterday and I’m still holding out for the proof against raw milk cheese as a probiotic. Apart from the cheese, I’m definitely eating clean. Apart from the coffee – which is a drink, so is not categorised under clean-eating anyway. Ok, so I’m not 100% back on board with the food thing yet, but I’ve always found that with me it evolves organically before complete abstinence is achieved.

Only 66 more days of denial to go.

Antibiotics, a 10 week trial.

I have made a decision. I am going to try the combination of antibiotics that I was prescribed in December last year and refused to take – Rifampicin and Clindamycin. Recently, I haven’t had any standard medical treatment for my HS. Years ago, I was prescribed topical steroid cream, antibiotic cream and standard antibiotics, when the HS was misdiagnosed as foliculitis/ingrown hair. Since being properly diagnosed, I have been taking homeopathic meds and painkillers. Despite my recent failure to keep it up, the autoimmune protocol diet has proven to be the most successful treatment I have had. But I have well and truly off that wagon and rolled way off down the hill. I need something to help me get back on. Is this it?

I have completely mixed emotions about this decision. In fact, when I agreed with my GP yesterday that I would try the antibiotics, I burst into tears. Then when I went to the pharmacy to collect them, I welled up again. It seems that I have spent so long (it has only been a few months, but I have never denied being just a wee bit melodramatic), trying to deal with this disease without hard drugs that this just seems like an epic fail. On the other hand, there is so much going on in our lives at the moment – trying to pack the house up for our move, deal with an awkward landlord and all the other general life stuff that happens when you are dealing with a building insurance claim from abroad and building a house! I am struggling to keep up with a varied diet for me and deal with the various food intolerances that my little one seems to have, too. All in all, I just don’t feel like I am making progress at the moment and my meandering motivation just will not come back. And combating this disease by diet needs 100% motivation.

I have come to the end of my Serocytol homeopathic treatment and had written it off as not working. However, after speaking to my friend, who recommended it in the first place, I probably should carry on with it for another 3 months before making any firm conclusions. At the moment though, I haven’t got time for this disease. Waking up in the night in pain and barely being able to sit down or walk, makes it very hard to deal with life. So I will book an appointment with my homeopath (who lives a long drive away) and get on with my other meds. On the plus side, my GP gave me another referral to a Dermatologist who he says has a lot of experience in her field. Lets hope she’s more cop than the last one!

I have read plenty of stuff from you guys and medical publications about the treatment that I am about to embark on. Many say it’s the Devil’s work. Many say they work just fine. Others stop due to gastrointestinal distress they suffer, whilst some say probiotics (sauerkraut, kefir, or pills) stave off the worst of the side effects. I would love to hear more positive (or negative!) experiences and if anyone has a time frame as to how long it worked for, or the type of improvements they found – or even if it worked in harmony with a change in their diet? I’d really appreciate more information about it.

All I know now is I don’t feel proud of what I’m about to do to my body, but like everything else, I am willing to give it a shot. I’m going to have one last weekend of Champagne (my hubby’s birthday is today), eating out and pretending that this disease isn’t having a major effect on my life.

So Monday here we come. I have my sauerkraut ready, antibiotics waiting and I’m good to go.

Bring it on.