Life has been rosy lately. No Hidradenitis Suppurativa means I am a new woman. I can sit down like a young person again – no awkward movements whilst I ease myself into a chair like an arthritic 90-year-old sucking on a lemon. I can walk for miles without developing a John Wayne swagger. I can let Baby Bodros jump up and down on my lap without wanting to cry out like a wounded dog. I go to work. Actual work and I physically work my ass off. To a normal person, these little delights are commonplace and now I am also guilty of taking it all for granted, as it has been so long with no pain.
Then – uh, oh…complacency came and bit me on my healed, pain-free, little ass! We had a take-out and the next day – mini flare!
It was an asian shrimp and ginger dish. No extras, no rice, no noodles, but no doubt cooked with sugar, soy and God only knows what other unhelpful foods this HS sufferer should probably avoid. And it wasn’t even that good!
I developed a tiny spot in one of the unmentionable zones. It was small and leaked straight away. I nearly cried. Not from the pain, but reaching for all my little potions to clean it brought back the horrible memories of constant cleaning, wound dressing, confinement to the house during a flare and all the emotions I went through at these times. Yes. I was feeling very sorry for myself.
Two days later and it is all fine. It has nearly healed and after much placation by Mr B, my Inner Drama Queen has headed back up to her tower, back on look out for the next inevitable, looming crisis. He gently explained that it took the HS two years to get as bad as it was, so a little hiccup is unlikely to induce over 30 open sores overnight. I had been so used to any little flare aggravating the whole area, it is hard to believe that with no open sores, a little flare will remain just that. Little.
So the moral of the story? Be kind to yourself and don’t freak out. Our HS is always going to be a part of us – a part of us that we have limited control over – so we will always have to find ways to adapt around it.
Bonne journée 🙂
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 🙂
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 🙂
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!
Hangover. Day 3.
Wow. This is not good. How did I used to suffer this pain all the time? I am 3 days into recovery from my ‘binge’ on Saturday and my HS is horrible! I have new spots, pain and all over discomfort. It hurts to sit down again – well, it always hurts a little to sit down, but right now? Horrible! I am taking paracetamol again – just one in the morning and one at night to help me sleep. I am having to completely strap all my wounds up, to stop the pain that I am getting from the chaffing. there are so many unmentionable side effects from a flare, I am just going to stop right now!
Monday was a complete right off. Now that was due to the wine hangover. When did it get so hard to overcome a night of drinking? I guess I didn’t feel so bad Sunday, because I was still buzzing a little from the lovely evening we’d had the night before, but Monday was a different story. I was tired, in pain and just one thing after another went wrong – I even locked myself out and had to break in by climbing through the neighbours’ gardens – not an easy feat when you are suffering a big HS flare!
The good news is I’m coming out of it though and I know it will get better than this. Before, a flare like this would have really gotten me down, as I would have had no clue as to how to reduce the pain again. I wouldn’t say I feel completely in control, but at least I know that by staying on the right food path, the inflammation will slowly subside. Even though I am moaning now, I know that the reality is that this pain could be 100% worse right now. My ‘golf ball’ has not swollen back up to a golf ball since I started the AI diet. All the HS spots I have right now have done a complete cycle over the last three days and at the risk of sounding icky (which we always do with this disease!), all are leaking nicely!
So it’s been a tough couple of days, but I am still feeling positive. The worst thing I can do is start thinking about what I haven’t/can’t do when I’m in pain. This morning I put zero pressure on myself to achieve anything and it worked; no expectations for me = increased motivation. In the end, I managed to bake bread for the rest of the family (which always makes you feel like you’ve achieved something doesn’t it?) and ended up doing a lot of washing and housework – success!
As far as the diet goes, I am pretty keen to start reintroducing foods in a controlled way soon. I hope I don’t trip myself up again and manage to stay on the right path!
This post is all about HS, so if you are squeamish, have no interest in blood and pus and other disgusting aspects of this disease, please feel free to move on!
I am sick of not getting anywhere with this. Whenever I have a few days like this I find the best way is to try to find something that gives me some hope that I can live a little more comfortably with this condition. So, I decided to email some dressing companies based on a wound care sheet I found. Convatec were very polite, but said they could not send me any dressings direct as samples are only sent to dermatologists/organisations etc. The nice lady from Convatec was very sweet and sent me a link to the Hidradenitis Suppurativa Trust website and urged me to go and see a dermatologist here. I’d very much like to, but my last experience of seeing a dermatologist in Bordeaux didn’t go so well.
We went to a hospital in Bordeaux. After waiting for nearly 2 hours, we finally met the derm. He brought in a whole load of students to examine my backside, spoke only in French, addressing Mr B most of the time. He spoke English to me at the very end, so obviously he could have explained the tricky bits in English, but chose not to. When I tried in earnest (in French) to explain how I had changed my diet and tried to change my whole lifestyle to combat this disease from inside, he hardly acknowledged it. Instead he wote me a prescription for a 10 week course of antibiotics and said, “If you were dying you would take it, but it’s up to you.” Oh, the arrogance!
Anyway, I am back to finding my own path for the time being. 3M called me back and said they would get their resident doctor to call me about types of dressings, but I never heard back. I decided to ask my homeopath for a prescription of Duoderm Extra Thin, but as usual when I think everything is going well the language barrier prevails and I got a prescription for Duoderm E Border (I believe it is Granuflex in the UK) instead.
I tried it the next day, carefully cutting it out and placing it directly on the sensitive spots that were leaking. It was weird, awkward and a bit cumbersome. The patches were quite thick and they were sticky, which meant my butt cheeks kept sticking together during the day! By the end of the day, I had had enough and tried to take them off. Well, it says just hold the skin and gently peel back…right…that’s not quite how it happened with me! I tried pulling and it was so stuck to my skin, I was in agony. Ed came to help me and at this point one side opened and pus dripped all over the floor. I started laughing at the absurdity of the position I was in, not really knowing what to do next. I stood in the shower and we carried on laughing as I peeled the layer of hydrocolloid off my broken skin, with intermittent yelps of pain between the laughs.
It hadn’t worked out as well as I’d hoped. it had been semi-waterproof, but had definitely cut the strips too big. I realised too, that my skin was so sensitive, I would need to put the Mepilex on under it, to prevent it sticking to my skin. It was a little disappointing, but for a first go at finding a longer term solution, it wasn’t all that bad. It’s hard to know what you are supposed to be doing with all of this new technology, even if it is just a glorified plaster.
One down, many more dressings to go! Allez!