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 🙂

 

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. 🙂

 

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, 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.

Holiday and travel. Part deux.

I am heading back to the UK for a surprise visit for a close friend’s hen weekend. I am so excited about the holiday and seeing friends and family, but extremely apprehensive. I guess travelling alone with a 22 month old baby would be a scary enough prospect for anyone, but for me that is not the biggest issue. I have different concerns.

I will not have my own food and limited access to kitchens for the first couple of days. After a day of travelling on Tuesday, we will be staying at a friend’s house in Hassock’s for one night and will be visiting in London the following day. I won’t be at Mum’s until Wednesday evening. I’m still struggling to come to terms with the limited foods that I can eat. As I so often fall off the wagon, I feel it’s a little hypocritical of me to start demanding that people make allowances for my diet. On the other hand, I should have the right to choose when I want to fall off my wagon – shouldn’t I? Even 3 months on, I’m still not sure how to deal with my dietary changes in new situations. In any case, I’ve packed a whole loads of fruit for the trip and plan on buying bags of washed salad for my lunch on Wednesday. My lovely, accommodating friend has reassured me that my food needs are not too tricky, so Tuesday evening should be fine, too.

My other issues are a bit more icky. Dressings and washable pads. I’ll strap on some Mepilex, gauze and Micropore before I leave, and at my first loo break, I’ll just ditch them. If I don’t strap up and I have to walk for some distance, I get sore much quicker. However, with a suitcase, baby and baby-carrier, I don’t think I’ll quite manage to replace the dressings on my journey. What will I do with my washable pads (yes, I have made my own home-made sanitary pads and they are much more comfortable than the plasticky disposables)? I think I have a waterproof zip bag that I can use – but who wants to be carrying dirty pads around with them?! After weighing it up, I figure it is just another thing I should get over. I just need to be prepared when I go change the pads, and have my little bag ready.

I’m disappointed that I’m already flaring from my last holiday. I so wanted to be flare-free and hoped to indulge a little more this time. With a camping trip planned for the weekend, with camping food and cocktails, I really wanted some leeway. On the other hand, I’m also disappointed that I’m completely off track. I so wanted to be disciplined with this. I wanted to heal my leaky gut, be flare-free, head into remission and live a pain-free life. Instead I am on a different path, but one that means I am living and enjoying life. I am not ensconced in my diet and I am not monitoring every little change in my skin. I am socialising, laughing, having fun and eating fun foods. I am, for much of the time, pretending I haven’t got this disease. My flares are much worse, but I know that after these holidays, I will back to reality. HS doesn’t let you forget for long.

Wobbly wagon wheels.

Finally the HS swelling is going down – recovering from my red meat, salmon, vinegar experiences has been pretty tough. I guess it’s like falling off any wagon after doing so well, picking yourself up again is a challenge. I have been more careful again, apart from the odd coffee and a couple of small glasses of good white wine this week. I have been taking my Serocytols medication and occasionally remembering to take my magnesium and other homeopathic remedies. I have been gorging on fresh coconut, which is probably not a good thing. Is there a recommended daily allowance for coconut?? I really should Google it up. Aside from that though, my face has cleared up and I feel good. I am going to try duck breast on the BBQ this weekend and see if it affects me. I am feeling more in control and ready to start a more structured reintroduction of foods.

I have been reading more and more posts about people finding diet has helped them improve their HS. It’s fantastic to hear it from so many. It’s a tough disease and sometimes it seems all you ever read is negative comments from people. I have to remind myself that the pain can take you into a dark forest, where even the strongest of us lose sight of the light. I am grateful that my journey is mostly positive and I have the support to keep on battling this disease in the most natural way possible.