Life with Hidradenitis suppurativa: 20 years and counting
Those who live with Hidradenitis suppurativa know that like any chronic condition, relief is something yearned for, and even the smallest degree of relief is certainly not taken for granted. Patients who live with such conditions gain a certain degree of expertise towards their own condition. And even though I can’t speak for all HS patients, I can continue sharing stories about my life with Hidradenitis suppurativa and the experience with phage therapy and my short glimpse of remission.
Any condition usually carries a list of indicators that help patients understand why and how they suffer from that condition. Hidradenitis suppurativa has a rather vague list, a list I don’t tick any of the boxes for. However, like any other condition, especially a long-term one, it develops in a certain personalized manner for each patient. What works for one may not work for another. I can only speak of my life with Hidradenitis suppurativa, and hopefully, this may bring some understanding, options, or even just an element of support to other HS patients in search of answers or remedies.
Living with Hidradenitis suppurativa and adjusting accordingly
In my previous post on this topic, I wrote of my remission. As I mentioned in that article, to me, remission is conceived as the sense of a normal life. The ability to extend that time as long as possible in between flare-ups. After several months of no flare-ups after phage therapy and intermittent fasting, the miracle ended.
- Re-appearance – It wasn’t all gloom and doom, as I only had 1 flare re-appear over the following 6 months. The flare was one of the older ones that had already developed into a deep inter channeling flare. To me, old flares as such are always a better sign than having a new flare show up. Before, I could have up to 15 flares, having a buffet mix of old flares and new ones.
- Duration – Another observation was that I would only have 1 flare that would last for the duration of exactly 5 days. As a comparison to my HS state prior to phage therapy, I had multiple flares that lasted for weeks and some even months. 5 days was a true relief in comparison.
- Pain level – The pain level, surprisingly was low on the first day and the last 2 days. Day 2 and 3 had the pain level higher than the previous days, possibly due to the accelerated rate of the flare development. The region would be hot and very sensitive to any touch as the inflammation inside expanded, stretching and pushing its way above and around.
When the flare appeared, I instantly turned to take phage cocktails from the Eliava Institute. My go-to phages were the Staphylococcus and PYO cocktails. To help the flare develop faster, I also applied Levomekol ointment, which although contains a dose of antibiotics, contributes greatly towards the healing of wounds with bacterial presence. After the different creams, ointments, and medication I have tried in my 20+ years of having HS, this ointment seems to be the only one that helps even with the slightest degree. Once the flares would open, I proceeded with a direct phage application.
Since I had never done a culture before, in the second month of the flare’s re-appearance, I decided to try my luck and went to the emergency room in hopes of getting it cut into and sending the culture to the lab. Very fortunately the young doctor who saw me did not turn me away from getting the culture analyzed, but was very familiar with Hidradenitis suppurativa. It certainly was a huge relief that apart from not having to attempt to stand my ground, I could finally talk to someone who didn’t look down at me or consider me a total wacko.
The lab test came back with the result that the flare had the presence of staphylococcus lugenesis together with a sensitivity test. The result however can be seen as inconclusive, given that I’ve been taking phages and no one knows just how long bacteriophages remain in our systems. Due to this, it is possible the that primary bacteria causing the inflammation may have no longer been present, but rather the result may have shown the bacteria that has taken over the process instead of it. As we know, the absence of one type of bacteria can very well create an open market for other bacteria to manifest themselves.
So even though the test was inconclusive, I was glad to have done it. Although truth be told, I would not wish that agonizing pain of having a scalpel cut into an inflamed, already painful area of your skin that already feels like it is being ripped slowly from the inside. I had no anesthetic done and the procedure felt like an hour, although it only took a few minutes.
Life with Hidradenitis suppurativa will constantly have you looking up new publications that may give you a little more information into understanding HS. My recent investigation got me across some medical articles that mention a possible relation of Hidradenitis suppurativa and a mutation in the gene PSTPIP1. I have not had the chance to check this out for myself with the current situation worldwide. I was left intrigued and am looking into getting this test to check if there may be a possibility that my HS may be a result of a mutation in this gene.
Life with Hidradenitis suppurativa during Covid19
Covid19 came as a blessing in disguise for my HS. I have made a few adjustments to my meals recently. I started taking Magnesium with Zinc, Vitamin C, Vitamin D3, and Quercetin supplements to help boost my immune system and maximize the barrier against the coronavirus. I also introduced homemade sourdough bread into my daily routine. Apart from absolutely loving bread, studies have shown that specifically, sourdough bread helps stabilize the digestive microflora.
Some of you may wonder what on earth has that got to do with Hidradenitis suppurativa. A lot of studies have recently been aimed towards studying the microflora and particularly the bacteria that is found in our digestive system. As we know, the presence or absence of one type of bacteria can lead to the absence or presence of another type of bacteria. From that way of thinking, if we were to introduce beneficial bacteria in the gut, we can very well weed out the harmful bacteria in the process.
It is also not too farfetched to think that bacteria causing discomfort and inflammations can very well fester in the gut, as it is known that the human gut is an entire universe and some even refer to it as an organ, all on its own, filled with all sorts of microorganisms. Some even go so far as to say that a certain presence or absence of particular bacteria can result in someone’s sudden change towards certain foods. Almost as though the micro-world within our digestive system effectively dictates what food we crave and which we no longer like. When it comes to sourdough bread, it is known to foster beneficial bacteria which helps to stabilize and create balance within our system. Some experts mention that sourdough bread contains prebiotics and probiotics, specifically lactobacillus, bacteria that are beneficial by mainly helping us break down food, absorb it, and fight off harmful organisms.
I’ve decided to try out this theory, as I could not find any downside to eating a fresh homemade loaf that is actually good for me! It has been a month since I began eating homemade sourdough bread. I eat different quantities, but I eat at least one piece every day. It has also been the first month in 6 months that I have not gotten a flare-up. Actually, one began to develop, painlessly and disappeared in less than 12 hours. Now am I saying I found the answer to rid the world off HS? No. But it certainly seems promising.
Other changes I noticed is the lack of digestive problems and even the clearing of my skin. There are many articles that also mention that eating sourdough bread, especially in large quantities can result in bloating. Another change to my daily meals is to drink a cup of brewed fennel, which is very well known to be an excellent remedy for an unsettled stomach. My skin became prone to acne a few years ago. I’ve never had acne, not even spots in my teen years. Doctors checked a rainbow of hormones and still were left puzzled until my dermatologist said that it is very likely due to me having HS, however in the past month, the skin has cleared.
For those who want to try making sourdough bread at home, this is the recipe I followed:
Life with Hidradenitis suppurtiva
After over 20 years, the majority of my life with Hidradenitis suppurativa, only now did it strike me that HS really is a part of me and it probably won’t be going anywhere. When I saw that 1 flare showed up after months of nothing, it really struck me into realizing that I simply have to accept this. Don’t get me wrong, this isn’t defeat. It is rather an acceptance. And when I reached the level of acceptance, I was truly ready to find methods that helped me prolong those normal days, rather than beating myself up on days that weren’t them. And even when it comes to finding methods of relief, it is a guessing and experimental game, however, you should always remember that you are the one who decides how far you are willing to go and what price you are willing to pay (money and health).
HS, just like us, is not frozen in time. It appears and acts individually for every patient and it is constantly developing as are we. So yes, it is very possible that what worked for you a month ago may not work for you a month from now. In my case, intermittent fasting, phage therapy & a diet change seems to be working for me today. I may have to change my routine next month or a year from now, and even that would be ok.
Although the search and understanding of Hidradenitis suppurativa continues, those who suffer from this condition need to find a way to continue attempting to live a normal life. This territory is unknown to all, so all we can really do is change our routines to those that give us relief and a sense of normal, whilst attempting not to cause additional harm and unnecessary pain.
I am still a firm believer that, in my case, bacteriophage therapy has played a significant role in helping subside pain and the number of flares, as well as played a role in extending the time between re-occurrences. If you are interested to learn more about bacteriophages, you can find more information on Bacteriophage.news. Apart from phages, the more research I conduct, the more I get intrigued by the crucial role the microbiome plays on our overall wellbeing. It is something I will certainly keep looking into, and maybe it will uncover more options for HS patients.