Antibiotics. Day 17 and all’s well.

I’m still offline at home, but will take a minute away from cleaning our ex-rental home (where we still have the net) and give another brief update.

The HS is healing. It is only leaking from one area right now, as opposed to at least 8 or 9 a few weeks ago. The Rifampicin and Clindamycin tablets are bringing me the respite I have dreamed of since my HS went haywire after the birth of my bubba 2 years ago. I am still living in chaos with the house move and my eating has not been 100% clean, but since being on these pills, I have had no major repercussions.

Unfortunately, I feel like I have been given a bit of a licence to cheat for a while and whilst I’m not going crazy eating bread or chocolate, I am having some wine, nuts and the occasional homemade pizza, with tomato and raw cheese. I just feel like the pressure is off me right now, and if I slip it won’t have catastrophic results. It is heavenly!! 

As for the side effects…well, they’re still there. My stomach is still a little dodgy, but so long as I eat the Sauerkraut and yoghurt (separately of course), I seem to be able to keep on top of it. It’s hard to discuss this without being too gross, but basically it is down to one to two bowel movements a day and they aren’t always too loose. That’s still too much information, right?!

The tablets make me sleepy and around 3 pm I usually take a quick nap – maybe 20 mins to an hour (depending on when the bubba wakes up). A new side effect is the hunger. I am pretty ravenous on these and no matter how much I eat, it doesn’t appear to satiate me. I am having to be really disciplined and eat more salad and fruit, when all I really want to do is eat my lovely homemade bread, with butter and honey! I have resisted so far and I think it’s best if I keep that off limits. There’s no knowing what will happen if I open that can of worms – especially as my HS probably wont react as much to it. Also, my usual snack of fresh coconut makes my tummy a little more icky, so I’m having to limit that, too. Mainly, I’m eating a lot of fruit – probably not great for my HS, but a damn sight better than gluten.

I still want to make a doctor’s appointment to have some blood tests for my liver/kidneys etc, but it’s just finding the time at the moment…..

I don’t think I’ll take these tablets past the 10 weeks, as I still believe that a good diet is key. It almost seems naive, but I’m hoping that after the pills, I can work with my diet to keep those healed areas closed. Who knows?

All I know now, is I can see why people try the tablets regardless of their toxicity. This pain-free living is addictive!!

Moving house. Offline and out of touch

Just a quick hello and to say I’ve moved house, so I’m waiting for the internet to be connected. Until then, I will say goodbye and see you all in a few days (hopefully!)

Brief update: HS still here, still annoying the crap out of me and I’m still taking my antibiotics. Pain is virtually gone, but I’m still swollen (that might be due to the homemade pizza I ate!).

Can’t move house and be good can I??!

See you soon! 🙂

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.

The Bridget Jones of dieting and yam-yams.

8 days. 8 days of antibiotics and 8 days of eating clean. Supposedly.

I’m happy to say that I have only missed one dose of my antibiotics. Not happy because I’m intoxicating my lovely gut with these drugs and a missed dose means a health break for my insides. No, happy that with the chaos of moving out, I have managed to remember to take them so often. It helps that Mr B is on board and I get the odd gentle reminder to get my ass of the sofa at night and take them. If I’m going to trial this antibiotics thing, I’ve got to do it 100% otherwise, what is the point?

My update on the antibiotics…well, I have still got the unmentionable going on in (and then swiftly out of) my stomach, although it is only happening once a day, so it’s bearable.  I have no gouty symptoms anymore, but what I do have is overwhelming tiredness. Like the type you get when having a flare (or a hangover). Just ridiculous I’m-gonna-lie-down-right-here-on-the-tiles type tiredness. Tiredness that makes my fuse reaaaaally short. The same as when you’re horomonal. That kind of tiredness. I’m hoping it’s yet another one of those symptoms that will gradually fade away, but until then I am having to be extra kind to myself, in order to achieve anything. Otherwise my Inner Perfectionist (she lives on the opposite side to my Inner Hypochondriac) keeps getting really cross that I am not getting my chores done, efficiently or at done all in some cases. I’m ignoring her and the Hypochondriac. Let them battle it out together. I’m just too tired to listen to either of them.

A new side-effect is yam-yams. This term may not be a familiar term to you, but you’ll see it makes true, onomatopoeic sense. Have you ever had a dry mouth from surgery, or from taking medication? When you are so dehydrated , your mouth feels like the inside of Ghandi’s flip-flop, in the desert, after he’s walked a few hundred miles? Well, yam-yams is the sound your mouth makes when you try to rehydrate it without actually drinking. When you suck your tongue and open and shut your mouth. Yam, yam, yam. This is what I have. Constantly. Despite drinking a fish pond of fluids daily. Still, I won’t die (really, Inner Hypochondriac, I really won’t.)

Then there’s my diet. Hmmm. I am mostly doing good. Lots of beautiful meals, but little creativity going on. Roast chicken or pork. Roasted vegetables. Pan-fried fish. Sautéed courgettes, garlic and onions. Roasted sweet potatoes. In cubes. In wedges. In bigger chunks. Lots of smooth coconut oil, lavished all over everything I cook. Lots of raw coconut. Tinned fish. Sauerkraut. No grains, bread, pasta, sweets, processed food.  Ok, no processed foods apart from two or three. Dried apricots and wine. And a little cheese. I had one glass of beautiful, high-quality, red wine at a Wine and Cheese party Saturday night. You would think that I would have learnt my lesson after nearly dying the day before of all the side effects of my meds; instead I ignored the potential cirrhosis of the liver and sipped a lovely glass of Burgundy.

I am Bridget Jones. Of the diet world. I make poor choices, repeatedly.

To be fair, the wine didn’t cause me to flare, neither did the raw milk cheese, called Langres (delicious by the way and from a beautiful little Fromagerie, where 95% of their stock is cheese made from raw milk). Maybe this lulled me into a false sense of security.Then came the dried apricots….

Yesterday, I was baking for Ty’s school fair. My Sugar Dragon was mocking me, as it always does when I’m baking. How tough is it to wash your hands every time a bit of chocolate or cake mix touches your fingers? To put the dark chocolate-smeared spoon straight in the dishwasher, fighting every instinct to put it in your mouth?? So, I caved and had a few apricots. No big deal, I thought, I’m on killer antibiotics, so it should be all right…

WRONG! The apricots have the highest fructose content of anything in the house (apart from the dried figs – thank goodness I didn’t see those!). Fructose and anything high sugar causes me to flare. In fact there is so much fructose in those little, seemingly harmless, gooey balls of organic, dried fruit, that I would probably have been better off licking the dark chocolate off the spoon.

So, take antibiotics if you want. Or don’t, it really is an individual choice that may even change over time. However, if you are going to make one personal choice that helps you to heal, try to cut out the sugar. It does seem that sugar, along with heat and humidity, really does affect so many people’s Hidradenitis Suppurativa. It is not that easy, especially if you live with others who happen to exist in a world where school fairs demand cakes. Especially if you continue to feed your inner Sugar Dragon, instead of slaying it. But it is definitely worth it in the end.

Today’s conclusion. An autoimmune protocol diet (with no added sugar) definitely works and hopefully Bridget Jones will learn to accept this very soon.

Day 8 and the jury is still out on the antibiotics. Now, where did I put my pint of water? Yam, yam, yam……

Hypochondria, death and being kind to yourself.

Yesterday, I made a schoolboy error. I Googled-up all the side-effects of my antibiotics, fuelling my state of heightened hypochondria. I induced something in between mild panic and fatalistic hysteria at my probable death. Oh dear God, why?

I was being so good. My whole reasoning for not taking the antibiotics originally was because I had studiously read up on all of the side-effects and decided that medication would be my last resort. So when I started the meds this week, it made sense to me not to read any more information on the tablets and just take them like a good girl.

I did take a quick glance at the pamphlets inside the Rifampicin and Clindamycin boxes and read the side effects in French. I didn’t fully understand them, but identified the important ones – nausées, douleurs abdominales, vomissements, diarrhées – and decided that was about enough reading right there. I made a mental note not to drink any alcohol (I’m clean-eating anyway, so I really shouldn’t be drinking) and stuffed my face with sauerkraut and Kombucha. Kombucha, which incidentally turned out to be 2% proof. I digress.

I was doing so well…

Until the stabbing pain shot through my toe. Not once, but twice. On different feet. At different times of the day.

Now, I know I may be a little dramatic sometimes and having learned a little about Gout (my step-father has just been diagnosed with it), I may have jumped a little to the conclusion that I had developed Gout and would now be restricted to eating lettuce and sauerkraut for the rest of my days (does sauerkraut even have a low purine level?).  I side-stepped my original plan of leaving the abundance of side-effect literature at the proverbial Mac-door and dove straight in to Google. I was convinced that even if I couldn’t allay my fears, the black and white print stating Gout as a side effect would prove that I wasn’t (a complete) hypochondriac.

What I found was yes, this medication could lead to elevated serum uric acid levels, which are associated with Gout. Oh. Now what?

I realised that I was completely ill-equipped to deal with this information. I was a Girl Scout short of a compass, in an unchartered forest. I could feel my inner control-freak turning up the panic dial, the needle heading for the red zone. The fear inside me notched up a level and the inner hypochondriac was on a roll! Should I stop taking the tablets? Should I call the doctor? Should I change my diet again? Should I read more about the possible side effects that were obviously about to destroy my already HS-riddled body?? In the end, I did none of these. Instead, I did the best thing any person can do in a time of a looming crisis. I slept on it.

Today, there is no pain. There are actually no side effects other than the enormous, bloated, balloon-shaped belly, which is more unsightly than painful. I have looked at the side-effects properly and taken a (non-emotional) read through the English versions of both. One of the key things I read (apart from the fact I could actually die – unlikely, but true) is that the gastrointestinal distress should settle after a few days and if it doesn’t, I should seek medical help.

I have come to an obvious conclusion – no matter how much I read, I am not a Doctor. I don’t know what levels of uric acid I have in my blood. I don’t know if my liver or my kidneys are the ones described in the pamphlet – ready to be ruined at the first sign of these hardcore antibiotics. I am making risk-assessments with no facts – completely blind. I also realised I was foolish to think my inner hypochondriac would be appeased, if I started these tablets without taking another look at the side-effects.

There is another likely cause of the mass-internal hysteria: I am going solo on this antibiotic mission. I shunned the Dermatologist way back in December, due to his less than favourable bedside manner and his unwillingness to engage in any conversation other than, ‘Take this medicine or don’t, it’s up to you’. He also failed to give my diet approach to HS  any credence – an ego basher at best and a real downer on my self-confidence. I left that appointment with the antibiotics prescription, wondering if I was doing the right thing to help myself. Now, despite all of that, I have to admit  I am not in control of this. I need an expert to help me, even if it isn’t one I like. I need the resources they possess, even if I do feel that they are biased and limited.

I have decided to go see my GP and ask him for some blood tests to alleviate my fears. I am giving myself licence to have these fears – after all, one can’t deny the toxicity of these drugs. There are reported success rates for antibiotics treating Hidradenitis Suppurativa and improvement of patients’ quality of life whilst taking the medication.  However, the outcomes are for those still on the medication. What about afterwards? I haven’t found any resources to say that you will stay in full remission forever and ever after taking a 10 week course of antibiotics….

My GP is lovely and understanding and even if he can’t help me himself, he will point me in the right direction. Until then, I will continue to take the tablets as directed. I will not freak out about the side effects. I will soothe my inner hypochondriac and reassure her that I am not about to die. I will take care of my body and above all, I will be kind to myself.

Sources:

 

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. Day 2

I have started my antibiotics and am back to the strict Autoimmune protocol diet – except for organic coffee (insert here: compulsory human deviation to any given diet to suit oneself). I am feeling positive, but apprehensive. I have minimised the amount of time I Google up all the negative effects of big pharmaceutical drugs, but can’t help being a bit of a hypochondriac already. I think my ribs hurt – is that a side effect? I have earache – that must be a side effect. I’m a bit tired – a side effect no doubt. Or maybe that was just because I stayed up until 1 am last night….

To prepare for the antibiotics, I bought some probiotics in the form of organic sauerkraut and Kombucha. My research on probiotics was a bit fruitless. I read some interesting stuff here by Matthew A.Ciorba, MD, Missouri, which gave a comprehensive overview of studies that have been conducted so far.

Can I have a croissant instead??

Breakfast? Can’t I just have a croissant instead??

My conclusion: probiotics work, but not all probiotics are equal; not all probiotics have the amount of million, billion bacteria load in them that they promise; not all probiotics survive stomach acid to make it to the gut to protect you; not all probiotics will populate the specific bacteria you need to protect your gut. Pretty conclusive stuff then, right? I’m still not sure I’ve properly researched controversial Kombucha properly and I’m not sure what other probiotic foods I can have. I tried kefir once and it made me feel funny! Plus, I’m supposed to be avoiding dairy, right? Tips please!

I’m still feeling pretty down about taking the antibiotics, but I can’t help feeling that little sparkle of hope that you get when you feel a) in control and 2) you may have found something that alleviates the incessant pain and misery HS lavishes upon us. It’s enough hope to motivate me to get back to eating salads anyway. My sugar dragon is raging again and if I can just get past the next two weeks without losing my mind or biting anyone’s head off, I’ll be a happy bunny. I’m just going to take it easy and see how these antibiotics work out. Not really. We’re moving house in two weeks, so that should take my mind off the pain and the drugs….

Related articles