Sinus disease is a common part of cystic fibrosis. Many of us need to have the chronic infection in our sinuses cleaned out and the polyps removed at some point in our lives. I personally have had 4 or 5 sinus surgeries in my life (I've lost count honestly). This type of sinus infection clean-out and polypectomy is called a FESS (functional endoscopic sinus surgery). I recently had a FESS done in December, plus a septoplasty. I needed a septoplasty because my septum had deviated to the point where it was occluding parts of my right sinus. Interestingly, the bone of the upper septum had ballooned out so that it looked quite deformed on CT-scan (but didn't aesthetically look unusual from the outside). When the surgeon went in to scrape it down, he remarked to me that the bone in there was like spongy mush; very unusual. I wonder if it is a sign of osteopenia. I don't know why else this would have happened. Maybe the infection/inflammation had effected the bone? I don't know.
Anyway, I mention this whole thing because afterward (it's been a month since the surgery and over two weeks since being out of the hospital) I had an epiphany about my health. The last time I had sinus surgery was five and a half years ago. I was not as on-top of my health back then and did not do the necessary post-op sinus rinses with the baby shampoo and bactroban mix that my surgeon prescribed. I still rinsed with saline daily for a month or so afterward. But after about 4 months after the surgery, I started having daily mid-day fevers that would start at 11 am and go until mid afternoon, zapping my energy, giving me chills, and making me a generally miserable human being. Without daily oral antibiotics (minocycline plus bactrim DS) I would be a shivery mess and was relying on tylenol to cut the fever so I could get through the day. This lasted for 5 years, and eventually got worse to the point where the fevers would persist even when on oral antibiotics. The only time the fever went away without tylenol or ibuprofen was when I was in the hospital on IV vancomycin, and the post-IV honeymoon period would last only a week after I got out of the hospital, then the fever would come back.
Eventually I noticed that the fever didn't necessarily correspond to increased lung mucus. Of course, eventually I'd develop a lung exacerbation, but the fever would start a few days before that. Curious. My docs would regularly tell me that chronic sinus infections can reinfect the lungs even after an IV clean-out. I guess I either didn't believe that that rule applied to me (I'm a dummy) or that because my sinuses felt fine (I can almost always breath out of both nostrils and never have sinus pressure) I wasn't reinfecting my lungs with my sinuses. I would rinse with saline every few days or whenever I felt like junk was up there, and would regularly rinse out yellow pus and chunks of green stuff. That became normal for me. Every time I went to the ENT he would say: you know, we should really do a surgery soon. After about 3 or 4 years of that, I eventually started to listen. So in December I decided it was the right time to get another surgery.
One of the reasons why I held off for so long was because it seemed after the last surgery, my polyps and infection came back very quickly. This was, of course, partly my fault because I was not diligent about post-op maintenance, but as a result I became quite pessimistic about the futility of a FESS in general, if all the disease was just going to come back a year or so later. But one thing that made me decide that I was ready for another surgery was that I have radically changed my diet and lifestyle since the last surgery. It is well known that food sensitivities can cause sinus inflammation and susceptibility to infection, even in non-CFers. Now that I no longer eat gluten, dairy, rancid oils, sugar, or processed foods in general, I feel that I have a much greater chance of being polyp and infection-free post-op for a long while (or forever). There are those stories of people having 5 surgeries and then after the 6th they never develop polyps again. Docs probably think this is a spontaneous fluke, but it may have more to do with changes in diet, lifestyle, and background inflammatory load than we yet know. So I have some hope that maybe this time the clean-out will stick.
Plus, I am SO MUCH more invested in my health and empowered than I used to be, and now that I'm an herbalist I have many herbal allies at my disposal to help me maintain infection-free sinuses. Since I've gotten out of the hospital I've been rinsing twice a day with either the baby shampoo plus bactroban mix prescribed to me, or with my own natural version of it: 7-9 mini-drops of Dr. Bronner's Baby-Mild Castile soap plus ~1/8 - 1/4 tsp of finely ground goldenseal powder in a 8-ounce saline sinus rinse bottle (NielMed). When I went in for my one month post-op check up, my ENT said things looked very good and very clean. I did have a complication when the ENT had to drain a septal hematoma one week after surgery, and this left a hole in the membrane covering the left side of my septum. I was very worried that the hole might turn into a septal perforation that went all the way through, but it is actually closing up now, thankfully. I've been putting both manuka honey and comfrey oil on the hole, and both seem to be helping it heal up.
There are several other formulas I've come up with as an antimicrobial sinus rinse for the NielMed bottle: 1) 1-2 drops of tea tree oil in saline, plus Dr. Bronner's soap; 2) fill 1/3 of the bottle with strong thyme tea, the rest of it with saline, plus Dr. Bronner's; 3) 3-4 capfuls of Alkalol liquid into the saline, plus Dr. Bronner's; 4) juice of a crushed garlic clove in the saline (this WILL hurt a lot but I think it's the best option when you have a cold, since garlic is so strongly antiviral). The formula with goldenseal powder is the gentlest of all these options, but still very powerful. I switch these up once in a while to ensure optimal potency, reduce risk of developing sensitivities/allergies, and to reduce risk of bacterial resistance.
The Moral of the Story
Usually after one week out of the hospital I develop a fever and lung exacerbation and have to go on oral antibiotics. But it's been more than two weeks out of the hospital and I still do not have any significant increase in mucus nor any fever! It's still too early to declare victory, but to me this is proof that what may have been causing this chronic fever and never-ending exacerbation was the infection in my sinuses! IV antibiotics cannot penetrate the poorly vascularized deeper cavities of the sinuses, so that's why nothing but a surgical interventional could have tackled the deepest infection back in there. Another lesson I took away from this adventure is that it pays to be on top of regular antibacterial sinus rinsing, especially after surgery. One thing is for sure: I will no longer ignore my doctors when they tell me it's time for a sinus clean out! If I can give one piece of advice on this topic it's that the idea that deeply infected sinuses can continually reinfect the lungs holds a lot of validity! Don't let it go as long as I did!
As far as the impact that a diet and lifestyle change has on keeping the sinuses polyp- and infection-free, only time will tell. But I will give you a progress report on this issue as time progresses.
Oh, and one last thing. Usually it takes me a very long time to wake up from anesthesia. But this time I took a triple dose (~500mg 3xday) of milk thistle extract for the couple days before my surgery and I recovered in record time (for me)! I continued with a high dose of milk thistle for several days after the surgery as well, to help the liver clear out the anesthesia. I will certainly do this again for my next surgery.
Eventually I noticed that the fever didn't necessarily correspond to increased lung mucus. Of course, eventually I'd develop a lung exacerbation, but the fever would start a few days before that. Curious. My docs would regularly tell me that chronic sinus infections can reinfect the lungs even after an IV clean-out. I guess I either didn't believe that that rule applied to me (I'm a dummy) or that because my sinuses felt fine (I can almost always breath out of both nostrils and never have sinus pressure) I wasn't reinfecting my lungs with my sinuses. I would rinse with saline every few days or whenever I felt like junk was up there, and would regularly rinse out yellow pus and chunks of green stuff. That became normal for me. Every time I went to the ENT he would say: you know, we should really do a surgery soon. After about 3 or 4 years of that, I eventually started to listen. So in December I decided it was the right time to get another surgery.
One of the reasons why I held off for so long was because it seemed after the last surgery, my polyps and infection came back very quickly. This was, of course, partly my fault because I was not diligent about post-op maintenance, but as a result I became quite pessimistic about the futility of a FESS in general, if all the disease was just going to come back a year or so later. But one thing that made me decide that I was ready for another surgery was that I have radically changed my diet and lifestyle since the last surgery. It is well known that food sensitivities can cause sinus inflammation and susceptibility to infection, even in non-CFers. Now that I no longer eat gluten, dairy, rancid oils, sugar, or processed foods in general, I feel that I have a much greater chance of being polyp and infection-free post-op for a long while (or forever). There are those stories of people having 5 surgeries and then after the 6th they never develop polyps again. Docs probably think this is a spontaneous fluke, but it may have more to do with changes in diet, lifestyle, and background inflammatory load than we yet know. So I have some hope that maybe this time the clean-out will stick.
Plus, I am SO MUCH more invested in my health and empowered than I used to be, and now that I'm an herbalist I have many herbal allies at my disposal to help me maintain infection-free sinuses. Since I've gotten out of the hospital I've been rinsing twice a day with either the baby shampoo plus bactroban mix prescribed to me, or with my own natural version of it: 7-9 mini-drops of Dr. Bronner's Baby-Mild Castile soap plus ~1/8 - 1/4 tsp of finely ground goldenseal powder in a 8-ounce saline sinus rinse bottle (NielMed). When I went in for my one month post-op check up, my ENT said things looked very good and very clean. I did have a complication when the ENT had to drain a septal hematoma one week after surgery, and this left a hole in the membrane covering the left side of my septum. I was very worried that the hole might turn into a septal perforation that went all the way through, but it is actually closing up now, thankfully. I've been putting both manuka honey and comfrey oil on the hole, and both seem to be helping it heal up.
There are several other formulas I've come up with as an antimicrobial sinus rinse for the NielMed bottle: 1) 1-2 drops of tea tree oil in saline, plus Dr. Bronner's soap; 2) fill 1/3 of the bottle with strong thyme tea, the rest of it with saline, plus Dr. Bronner's; 3) 3-4 capfuls of Alkalol liquid into the saline, plus Dr. Bronner's; 4) juice of a crushed garlic clove in the saline (this WILL hurt a lot but I think it's the best option when you have a cold, since garlic is so strongly antiviral). The formula with goldenseal powder is the gentlest of all these options, but still very powerful. I switch these up once in a while to ensure optimal potency, reduce risk of developing sensitivities/allergies, and to reduce risk of bacterial resistance.
The Moral of the Story
Usually after one week out of the hospital I develop a fever and lung exacerbation and have to go on oral antibiotics. But it's been more than two weeks out of the hospital and I still do not have any significant increase in mucus nor any fever! It's still too early to declare victory, but to me this is proof that what may have been causing this chronic fever and never-ending exacerbation was the infection in my sinuses! IV antibiotics cannot penetrate the poorly vascularized deeper cavities of the sinuses, so that's why nothing but a surgical interventional could have tackled the deepest infection back in there. Another lesson I took away from this adventure is that it pays to be on top of regular antibacterial sinus rinsing, especially after surgery. One thing is for sure: I will no longer ignore my doctors when they tell me it's time for a sinus clean out! If I can give one piece of advice on this topic it's that the idea that deeply infected sinuses can continually reinfect the lungs holds a lot of validity! Don't let it go as long as I did!
As far as the impact that a diet and lifestyle change has on keeping the sinuses polyp- and infection-free, only time will tell. But I will give you a progress report on this issue as time progresses.
Oh, and one last thing. Usually it takes me a very long time to wake up from anesthesia. But this time I took a triple dose (~500mg 3xday) of milk thistle extract for the couple days before my surgery and I recovered in record time (for me)! I continued with a high dose of milk thistle for several days after the surgery as well, to help the liver clear out the anesthesia. I will certainly do this again for my next surgery.
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