A fortnight post-Clindamycin and Rifampicin

It has been two weeks since my last antibiotic pill. I am in remission. I did feel absolutely fantastic….then my stomach went a little crazy.

It started Wednesday evening and followed the next day. I was working and was a little worried, but managed to control it all until I got home. Then it really was bad! I was feeling pretty weak by then, as I had just been drinking chicken soup (hardly chicken soup – just hot water with an organic stock cube, as we have no homemade stock due to freezer fail – see earlier posts). I managed a trip to the pharmacy with the wee one and purchased some Immodium and some super expensive probiotic. I then dealt with two more days of gastric distress and working really hard, trying to placate Inner Hypochondriac who had completely written me off as a terminal IBS sufferer.

A few days later and I have some perspective. It turns our Inner Hypochondriac was wrong once again. In fact, everyone in the family had a dodgy tummy and we’d all had some sort of bug. On the plus side, I lost 5 pounds and I look fabulous 😉

The Hidradenitis is behaving itself. There have been no flares. I still haven’t got my cooking mojo back. It is exacerbated by working and no hob/freezer, but it doesn’t mean we’re not eating amazingly tasty food, it just means I’m not being as creative, which is a shame. I have been mainly eating salads and basic proteins – fish, chicken, duck and steak. Steak hasn’t made me flare, which is strange, as it used to. It may be the fact we are buying it from a local butcher and it could be less pumped full of antibiotics etc. Who knows? I am also eating plenty of raw milk cheese – Gruyère, Comté and recently Saint Félicien – very stinky! Before my dodgy tummy, I was also eating a little bit of my organic homemade bread, made from spelt flour. I let it do a double rise, before I cook it and it doesn’t make me flare. I know I really shouldn’t eat bread, but occasionally I have felt the urge to eat it and as my work has been pretty physical, I’m not about to get stressed out about what I should and shouldn’t be eating on top of being physically tired. It has been fine if I just have a small amount and needless to say, I only ever eat the bread I make.

So far, so good. Generally being kind to myself. Generally working really hard. Generally loving life 🙂

The truth about remission.

Once again…I’m back! Losing internet connection is a little bit like being on a desert island, isn’t it? Especially if you live abroad and don’t watch local TV. It doesn’t look like I missed much and despite the frustration at not being able to Google-up everything, I survived.

So much has happened in the past few weeks:

We moved house (the second time in under two months).

We had two lots of visitors.

I underwent a three-step interview/recruitment process. In French.

I got a job.

Bubba Bodros went into childcare.

However, despite all of those highly stressful little challenges, stopping my antibiotics last Monday was the change I feared the most. Especially as I was starting work the very same day I stopped my tablets. I wasn’t sure if it was work suicide to stop the tablets, but I crossed my fingers and stopped them anyway.

The result? I’m still in remission. It’s early stages though and I am being a little bit more careful with my diet. I have no medical knowledge, but I am assuming the effects of the antibiotics will hang around for a little longer before I experience any flares. From the Rifampicin and Clindamycin combo research that I looked at, it appeared that many people remained in remission for a while after their treatment, so it could just be temporary. But lets not get down about that! Lets evaluate the absolutely fantastic situation that I currently find myself in. Remission.

I read many comments of people asking what is remission. What does it look like? Is it when your lesions heal, but tracts remain? Is it when you just have one or two spots, but the general area has improved? Is it just improvement generally? Is it possible to achieve remission at all or are these people just exaggerating??

The online Oxford dictionary states that remission is a:

“temporary diminution of the severity of disease or pain”.

I didn’t like that one. I don’t want to hear that remission is only a ‘diminution of the severity’. I had a diminution of severity the week I started eating Paleo, but it sure as heck wasn’t remission! I carried on my search down a different vein. As I have always heard of remission in the context of cancer patients, I looked up a cancer definition of remission. It states:

“A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.”

I prefer that one. It was a much better description of what I thought full remission was, and what I wished for when I was in the full throes of a Hidradenitis Suppurativa flare. It was what I dreamed my diet would bring about, but a state I was unable to reach. It wasn’t the diet’s fault, I just think there were too many open sores to heal and I was still working out which foods caused me to flare.

Remission for my case is no open sores, no swelling and no pain. I can still feel tracts under my skin (perhaps just the scars from them) and have small bulges of scar tissue all around my groin. It is amazing! I hope to stay in remission by keeping away from trigger foods. it is all gravy so far!

To summarise, it would appear that when people say they are in remission , but still have some HS activity, they are right to state their case. However, for those of you seeking remission in the way that I understand it – no current symptoms at all, it really is possible, too.

Go see your derm, keep working at the diet, be positive and above all be kind to yourself 🙂

 

Bye-bye Clindamycin and Rifampicin. It’s been a pleasure.

It has been an amazing 9 weeks. I have seen an improvement in my Hidradenitis Suppurativa that I never thought I would. I’ve been living pain-free for weeks. I’ve worn my bikini lots and lots. I’ve spent evenings in the hot tub on holiday. With no daily swelling, I’ve found my trigger foods easier to spot, any little flare being noticeable. I’ve enjoyed nights and days off this crazy diet with little impact to my HS.

I’ve been living!

So now, I’m getting ready to say goodbye. Goodbye to Clindamycin and Rifampicin. My little security blankets in tablet form. My little silver linings. Goodbye to the guarantee that I will have consecutive days of no pain. Goodbye to cheating on my diet.

Guess what? I’m super scared!

I am trying to get it into perspective. I have made progress on working out triggers. I’ve had a long period of nearly 100% remission. I’ve had an even longer time with no open lesions. I’ve found a temporary fix that I may be able to use for future holidays or situations where I think I may not be able to stick to my diet. I have made progress on accepting my new eating habits – although sometimes I feel I am a long way from being fully committed to paleo eating! I have organically phased out certain foods that I believe will very, very rarely – if ever-  pass these lips again. Above all, I have enjoyed my physical freedom and am grateful for being able to once again, experience pain-free living.

Many of you have said that it will be fine. So long as I stick to the diet, I will stay in remission. I’m hoping so. The problem is, life is always getting in the way. Due to the storm damage, I no longer have a freezer. I have lost all my homemade chicken stock, fish stock, coconut milk, bones and gluten/sugar-free goodies I had made and frozen. I have a Campingaz stove instead of a proper stove top/hob. I am in the middle of moving house again – the second time in 6 weeks. I have a second job interview for a 22 hour post – minimum. I need to find a child-minder. I have a super active 2 year old and a very teenage 10 year old! I am dealing with all of life’s hiccups and obstacles in a foreign language. This is enough to make anyone lose their cooking mojo, right??!

To deal with all this, I am trying to focus on staying prepared as much as possible. I’ve been making an excess of food at dinner to ensure I have plenty left over to eat for breakfast or lunch. I am eating plenty of fruit (I am not about to make any inroads on this sugar dragon with this level of stress!). I am looking at lots of lovely recipes of all the foods I can eat. I am reading my lovely new Digestive Health with Real Food book, to remind myself why I am eating like this.

Despite all my efforts and due to the chaos we are living in, we are still having take outs on occasion. I still try to avoid things that I know will really aggravate my HS. However,  I’m sure once I’m off the antibiotics, these foods will cause me big problems, if I were to eat them as often as I am now. That’s what scares me. Just a day or two of undisciplined eating could send me back to those dark days of pain.

On the positive side, I will be antibiotic free. My stomach will be normal again. I won’t feel lethargic anymore. I won’t be reminded by my Inner Hypochondriac that I am slowly poisoning myself to death. My feet will stop peeling. Certain other parts will stop itching! My body flora will be graciously returned to its natural state – although I’m sure it’ll be awhile before I get a good balance back!

In al, I will have achieved what I set out to achieve – a clean slate to start afresh with. No leaks, no spots, no swelling.

I have been free and I have enjoyed it. Every. Single. Day.

One week left of this free ride, then it’s back to business. Better get my head back in those books!

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!

 

 

Hello Day one, I’ve missed you.

I’m done messing with my diet (she says for the 17th day in a row). No, but seriously, I really need to stop using these antibiotics as a crutch and start clean-eating again. I am a month into my 10 week course of Clindamycin and Rifampicin and although taking antibiotics goes against everything I believe in, I have to say the results are amazing. I am barely leaking at all, and the persistent swelling has decreased so much so, that I can throw myself down into a seat and there is no pain. Nada. Zilch. Nothing. HEAVEN!!!

Excellent, you say, no need to write anymore blog! Actually, no. These tablets are like a holiday for me. A little respite from real life. They are toxic and have horrible side effects. They can cause liver disease. They make my tongue furry (which swilling my mouth out with apple cider vinegar has cured, by the way). They have brought back my peeling, dry, itchy skin on my feet. They make me need to poop – and it’s not a pretty picture. I have to eat loads of sauerkraut (which actually isn’t too bad). They make me tired, a little out of sorts.

Most of all, I feel the opposite of how I did when I started the autoimmune diet. I feel like I am poisoning my body instead of healing it (did I mention I was a drama queen?). I was trying to heal my leaky gut with all that lovely, nourishing, home-cooked good food and now I am attacking my insides with chemicals.

Such a dichotomy.

Whilst I’m not looking a gift-horse in the mouth (that’s a really weird idiom!), I am only on these tablets short-term. I am still anticipating that after my 10 weeks is up, I am only going to get some major remission going on by sticking to my autoimmune protocol diet. In the meantime, I want to take advantage of the healing that has happened. I want to keep those sinus tracts shrunk, or healed or whatever has happened to them. I want to wear my bikini again and agin. I want to wear mini-skirts all summer, without Micropore peeping out of the bottom. I want to enjoy the freedom of spending under 2 minutes in the bathroom, because I have no dressings to change. I want to have a go on a Space Hopper. I want to sit comfortably with my baby on my knees, without wincing when she wiggles. I want the whole, entire and wonderful healed-upness of my Hidradenitis Suppurativa to stay just the way it is.

Today I got busy. I went to an amazing farmer’s market of organic goods  Lidl and bought as much of the fresh produce as I could fit in the bags I was carrying (it’s in the ghetto and they don’t have baskets). Their organic range is CHEEEEAP! They also stock the cured ham that I eat. It lists only ham and salt as the two ingredients and it’s cheaper by at least 2 euro here than in any other local supermarket. The only other packaged item I bought from there was Perrier. I dodged the drug dealers on the way out and Mr B did the rest of the food shopping at Auchan – the actual, biggest supermarket I have ever seen. So big, I walked for about 5 minutes before I even reached the food section. So big, I think it may be bigger, even, than Sam’s Club in Slidell, Louisiana! Maybe not as big as a supermarket in Texas, though. I digress.

I made a meal plan for this week to keep me on track. We kicked off tonight with cod, marinated in a lime, garlic, coconut oil sauce with fresh parsley and basil, Himalayan pink salt and organic cracked black pepper. This was served with sautéed green beans, oyster mushrooms, onion and garlic and all cooked by the lovely Mr B!

De-li-cious! Made even more tasty, because I didn’t have to lift a finger to cook it!

For the rest of the week, main meals are as follows (not in any particular order):

  1. Easiest roast chicken ever –  Instead of leeks, which we don’t have, we ‘ll be subbing courgettes in to this dish and serving it with salad. Who says roasties can’t be served up with a salad??
  2. Chicken and vegetable curry – using leftover chicken, homemade coconut milk, homemade curry paste (excluding paprika and chilli), ginger, garlic, onion, carrots and homemade chicken stock (I use this recipe, with frozen leftover peels and chicken bones). Served with cauliflower rice, fried with peas.
  3. Healthy Gluten-free Life’s Dutch Oven Pork – as featured on Nomnompaleo’s page. Love our Le Creuset Dutch Oven cocotte, which cooks food so evenly and keeps it moist. We’ll have that with sautéed broccoli, onion and garlic all fried in silky smooth organic coconut oil of course! Perhaps a side of salad, too.
  4. Large wild gamba, marinated in lime, garlic and ginger, seared on the griddle and served with my scrummy roasted sweet potatoes. And salad. And probably sauerkraut for me.
  5. Asian chicken thighs – again Michelle from Nomnompaleo’s recipe. What? Again? Yup. Each time I Googled the ingredients, hers was way up there and looked delicious, with only a few ingredients that I needed to remove to adapt for the autoimmune protocol. Served with salad.
  6. Sweet potato and prawn soup, which we’ve adapted from an Everyday Paleo recipe. We’ll have some leftover coconut milk and prawns (there are two kilos in the freezer and we’ll have to defrost the lot , so we’ll cook ’em all and throw some back in the freezer for this dish.

Et voila! That’s me all sorted for the week. I hope to all that is Holy and Mighty that there are no more sh*t storms this week and I manage to keep on track (and off the incredible Bordeaux wine).

Day one is done…..

Luck, positivity and a bikini body.

Nearly three weeks in to the antibiotic treatment and I feel a little all over the place. In the last two weeks, we have moved house, are battling with an ignorant (soon-to-be-ex) landlord and have no hob/stove top. Of course, the thing that always suffers first is the diet….

Whilst trying to get my head back in the game, all the old feelings of injustice have bubbled up again. Why me? Why can’t I eat what I like? How is it even possible that my diet could have such an impact on my health? Why do I have to suffer daily pain? How can such innocent food have such a devastating result on something as seemingly disconnected as my skin? Why, why, WHY??!!

During my little baby tantrum, Mr B suggested we go the lake. I begrudgingly got up to get ready and then had an amazing realization; a revelation that sprung me out of my funk and into a fit of hazy and delirious happiness – I would actually be able to wear a normal bikini!  With no pads! With no leaks! Just like a normal, regular person. Wooohoooooooooo!!!

What a difference that made to my mood! Something so small, that I have always taken for granted. I mean I’ve never been happy with my body in a bikini, but at least I could wear one! I also realised that this means when I go back to the UK, I can go hang in my friend’s hot tub! Double wooohooooo!!!

After a lovely afternoon with the kids at the lake, I got to thinking…it is so hard to find positives that have an impact all the time. Mostly, our positives are, “I’m so lucky this isn’t terminal,” or “I should be grateful that my HS isn’t as bad/in a more obvious place/as painful as the next person’s (delete as applicable)”. But these aren’t really positives, are they? They are just comparisons – used to chastise ourselves for wallowing in self-pity. They are not positives. I mean, instead of thinking how lucky I am that I don’t have cancer, I should be thinking how amazing it was that I had another day without pain; how brilliant that today the side effects from the drugs I take were nothing compared to how awful the effects of HS are; how amazing it is that I have been able to eat some different foods lately and not suffer too much.

So there it is. I am still a little stressed out. I’m still getting my diet under control. I’m trying hard to be kind to myself and stay positive. I am learning that it’s a real thin line between comparisons and self-positives, but just thinking about the freedom and happiness I felt just from wearing a bikini, I think with some practice, I should be able to be more positive.

After all, I’m not dying, am I? 😉

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.