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!

A stormy welcome home….

I’m back! I have been away in the UK since July 17th and have had a wonderful holiday. I managed to catch up with loads of my beautiful family and friends. I relaxed. I ate a lot of what I wanted. I drank (an awful lot of) home-made fresh fruit daiquiris, wine and champagne. I didn’t get my necessary 8 hours sleep per night. I spent two weeks unbeholden to HS and I LOVED IT!

Ok, so now I’m a little bit broken. I have no flares at the moment, thank goodness, but I am very tired! On top of that, we arrived home to a storm damaged apartment. After travelling for 18 hours, most of it in the car, we were greeted by the stench of rotting food. At 1 am, instead of putting the girls to bed and having a well deserved cup of tea, we had to get our heads round removing the rancid food and getting the stench out of the apartment. If that wasn’t bad enough, the ceiling in the girls’ bedroom fell in after we had put them to bed, so we had to take them out and rearrange the sleeping areas. We are now sleeping in the equivalent of a one bedroom flat and my auntie is here with us, on holiday. Both the girls fell ill the day we arrived and we have been up most nights with the little one, who is struggling to breath, is coughing and has gunky eyes. Poor babies!

The landlord has been amazing and has offered us a larger apartment across the road for the same price we are paying here. We had moved into this smaller apartment to save money for the house we are starting to build nearby. It has been a bit of a struggle to fit everything in here after downsizing from a three bed house with a garage and garden to a two bed flat with a balcony, so upsizing will be great. Once we’re in!

While we deal with this little trauma, the poorly kids and the house move (and for added extra pressure – a job interview for me this week), the blog will be on hold. Feel free to ‘like’ my Facebook page though, Healing Hidradenitis, for the occasional update and super awesome links I find, out and about on the web.

Very soon, I will be fully functioning and ready to roll again.

A bien tôt!

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…..

Dressing up for Hidradenitis Suppurativa

For those who have Hidradenitis Suppurativa (HS) or Acne Inversa, as it is also known, changing dressings is a daily or even hourly ritual. When HS is diagnosed, the patient’s disease is often given a stage of development, based on the Hurley scale of pain.

If you have early stages, you may have a limited knowledge of which dressings are available to you and may find this post useful – a novices guide to what’s available. However, those who have had surgery, incision and drainage and other more intensive procedures to remove glands and entire affected areas will probably have a far superior knowledge of this topic than I. Voila!

Getting dressed-up took on a whole new meaning....

Getting dressed-up took on a whole new meaning….

Micropore and gauze pads

I started trying to find different dressings when regular plasters were no longer big enough. I had the idea of using Micropore and gauze to cover the wounds and started off by buying 7.5 x 7.5 cm squares and regular Micropore. I would clean the affected area (in my case my groin, bikini line, entire genital and perianal area) with tea tree oil and warm water. Occasionally, I would apply organic Calendula oil or organic coconut oil to the spots before covering them with the dressings. The combination of healing qualities and soothing silkiness of the oil gave some relief to those tender areas.

I was amazed at the difference in quality of life such a small change had made. By covering the HS with the gauze, I could walk longer distances without getting sore. I still had to use sanitary towels, but felt the whole mess was a lot more manageable. After initially purchasing them myself, my doctor gave me a prescription for the dressings, including a larger 10 x 10 gauze pad and multiple boxes of Micropore. The larger gauze was much more effective, as I was beginning to need more coverage. Despite being happier, I was determined to find more ways to cover the suppurating wounds.

Mepilex Transfer 

My GP offered me a new dressing  – Mepilex Transfer, a silicone pad that adheres to the skin, but only really gently. As well as absorbing the exudate away from the skin and through to the other side, it provides a spongy and cushion-like layer against your delicate skin.

Mepilex transfer....the cushiony option

Mepilex Transfer….the cushiony option

Patch of pure perfection..

Patch of pure perfection..

My prescriptions in France are mostly reimbursable at 100%, but I still tried to be economical with the Mepilex knowing it was pretty pricey (around 26 euro/22 pounds/34 dollars for a pack of 16). I cut it up to cover my awkward and hard to reach HS sites and then strapped the whole area up with gauze and Micropore.

It was fantastic! I was so amazed at the technology of the whole thing. Where the gauze had worked by reducing the chaffing, this almost stopped it altogether. The exudate was concentrated in each area and looking at the Mepilex afterwards helped identify how many areas were weeping, or had healed. With Mepilex underneath the gauze, the dressing stayed in place over the wound and I did not get the same eye-watering shooting pain that I normally would just from taking a seat. It was no miracle cure, but boy, it was way better than just a pad in your underwear!

So I stopped there, right? No. I was still faced with the issue of having to change the pads every time I used the bathroom and was still looking for a waterproof option. I am not blessed with the strongest of bladders and just the thought of not being able to go pee makes me need to go again! Also the thought of using public toilets, whilst balancing over a seat, holding dressings away from your skin and then reapplying them or new ones, all with a 2-year-old clinging to my legs wasn’t inspiring me to leave the house!
I Googled away until I found this wound care sheet and other wound care information (the latter is for medical staff). It gave me a good place to start, especially as I was not seeing a dermatologist. Even if I was, it would have been good to have this info to take with me and demand stuff! I sent off some emails to the dressings companies, but they usually deal with dermatologists directly, so I set about pestering my lovely doctor and homeopath for some more prescriptions.
Duoderm – extra thin and bordered (Granuflex)
Bordering on comfort...

Bordering on comfort…

Sneaky peek at the hydrocolloid...

Sneaky peek at the hydrocolloid…

A-peel-able glimpse at the cushion finish.

A-peel-able glimpse at the cushion finish.

I mentioned on a previous post that I had intended to get Duoderm extra thin, thinking it would be a good waterproofing option. I wanted something I could leave on all day, without having to worry about changing it whilst I was out with the little one. Instead I ended up with Duoderm border, as featured above! It was a bit of a disaster, as I applied it with no knowledge of how it would work. It stuck firmly to my skin and the absorbent cushion layer was not what I was looking for on the whole waterproofing front. I had to take it off prematurely and it was all very painful!!

 I eventually got my Duoderm ET and after a rough start with the hydrocolloid dressings I decided that I needed to have a plan.
Extra thin and extra sticky

Extra thin and extra sticky

Wash the wounds and clean them before bed. Apply cut out Duoderm extra thin. Hold and mould against skin until it is firmly adhered. Leave in place for 24 hours and peel off after a soak in the bath or in the shower.

It worked, but alas, it rubbed/stuck together when applied on both sides of my groin/backside/top thigh area. This meant long walks with it were out, but it was perfect for long car journeys where using the rest room meant a quick in and out, with no awkwardness (other than hovering over a toilet seat – or the traditional hole in the ground!). The hydrocolloid absorbed the exudate and there was no chaffing from my clothes. If my HS had been elsewhere, I think both the Duoderm products would have been perfect for everyday cover.

Still undeterred, I spoke to the Pharmacist in my best French (probably more like primary school French, but I tried) and she showed me Hypafix. This was what I had been looking for all along – a thin layer of adhesive that I would be able to place over the Mepilex. It was 11 euro, and only 2 euro reimbursable, but heck, with all the free dressings I had had up until now, I was willing to pay out for this!

Deceptively papery...

I stick it where the sun don’t shine…

Hypafix

This stuff is a thin sheet of film. Trust me – under all that paper there really is just a layer of cling-film type stuff, that adheres beautifully to the skin. You cut it to size. Peel one side up to the red line, to expose the film. Stick it over your Mepilex patch, making sure you’ve got a good couple of centimetres around the dressing (if you can manage it – I couldn’t always due to the main offenders being on my bikini line and there ain’t much flat skin around there!) Peel the paper back and voila! A fully waterproof cover for your dressings. Now, I still had a few issues with keeping it stick to the skin, but mainly because my HS is all down below and pretty awkward to keep covered. However, it worked and I felt vindicated in my solo search for the waterproofing option!

Mepitel

The Pharmacist also recommended Mepitel, which my obliging doctor was happy to prescribe. it is a sticky meshing dressing and is to be used under another dressing. Again, I think this would be perfect for HS in other areas other than the groin, where the dressings do not need to be changed every bathroom break. Like the other dressings, it can be left in place for a long time and seriously reduces chaffing and promotes healing.

A sticky mesh...

A sticky mesh…

I hear that Medihoney is a really good dressing, too, but along with many others, I have yet to try it. It’s a wonderful world of technology out there and if you have the means, or a lovely doctor/dermatologist, you can get your hands on some super dressings to make the whole sticky mess a lot more comfortable.  Allez! Go try them!

I am currently dressing free, due to the antibiotics I am on. It is a relief, but only a temporary fix, so I may have to start strapping up my HS once the course is finished. Or not, if I manage to stick to the AI diet…wish me luck!

Serocytol immunosuppressant therapy and Hidradenitis Suppurativa.

I’ve been back to see my Homeopath. I’ve been prescribed a second batch of Serocytols, a Swiss homeopathic immunosuppressant treatment. It is a natural remedy made using blood from immunised horses, who are apparently very well cared for on the Serolab farm. Serum therapy, as it is known, has been around for over a century and was initially used to treat diphtheria and tetanus patients. The development of Serocytol came from this in the 1930’s.

It has no side effects, but I have yet to see any improvement from taking it thus far. I have had a three-month treatment and am about to embark on another three months. It costs me just under 120 euro (about 156 dollars/102 pound sterling) for the three months and I take it orally in a tincture. If you haven’t already read about why I’m taking Serocytol, here’s a little recap.

A good friend of ours, a lovely French man lived in the UK and married an English woman. She had Rheumatoid arthritis. She was young and had tried different treatments. He persuaded her to go and see his family homeopath back in France (in France it is common to have a homeopath treat you as regularly as a General Practitioner). She was prescribed Serocytol and took it for three months with no results. She was further persuaded to take it for another three months and noticed improvements. About 6 months later, she took another 3-month course and she is cured.

Horsing around with Homeopathics...

Horsing around with Homeopathics…

I did some Googling, but was not very successful – you can bet that most of the research is in French, as it is a Swiss drug, and I didn’t Google it up in Français. Anyway, I like to think I am pretty open-minded and whilst the treatment is expensive, it has no known side effects (apart from burning a small hole in your pocket). Meh…I’m willing to give it ago. Also, I wanted to write about the success (or failure) of the Serocytol therapy, you know, just in case it is the cure-all for this nasty little disease!

I started the treatment at the same time as I started my AI diet, so it was lucky enough to be credited for some good results at first. However, when I fell of my AI wagon (with a few bumps appearing shortly after), I knew that it was really my strict diet that had given me respite. Despite all that, I’m not a quitter and where would be the sense in starting a treatment, if I wasn’t to give it its best shot? So, mug or not, I am going to order a second batch.

The Homeopath has already tried me on about 8 other different homeopathic remedies and this time, he has prescribed another three on top of the Serocytols. He’s a persistent man and I thank him for that, because if I were a homeopath faced with a disease as complicated and diverse as Hidradenitis Suppurativa, I would have just thrown in the towel!

I am reimbursed by the French state for all homeopathic treatments (apart from the Serocytols), including most of the consultation fee, which is only 36 euro anyway. So, it’s off to the pharmacy I go today (for my freebie homeopathic granules and probiotics). Serocytol will have to wait until next payday, but fortunately HS is very patient and I know it’ll stick around until then. 🙂