Hello everyone, I'm looking for advice and leads based on my with my personal situation that can be backed up from personal experiences or scientific studies.
I got diagnosed with ulcerative colitis at age 12, had to take away the greater part of my colon through surgery at 14 (got an ostomi) and connected everything again (no more ostomi) at age 15. I currently have my rectum and a very small part of my colon left (I am now 23 years old, Male). I was fine for a couple of years after the surgery, but the last 2-4 years I've had som ups and downs (although the downs don't hurt as much anymore since I only have my rectum and a small part of my colon left to be inflamed).
I had completely clean skin with the very rare occasional teenage zit until I was 16. It started very mild on my chin and I didn't really care as I thought it was gonna pass. At 17 it was moderate for a while and than it went away for a while. During this time I didn't use any acne treatment besides some washes my mum picked up over the counter. At 18-19 my acne got kind of moderate/severe. I got it all over my face, chest, shoulders and neck. Duac cleaned everything up quite nicely. After a while duac stopped working and this is when my acne got the worst it's ever been. My worst areas was just under my ear, the jawline, the sides of my throat, and my neck. I had extremely inflamed, super-red acne that itched and hurt. I would say I have dry skin that sometimes gets oily. 6 months of ery-max cleaned the acne up. It came back and I did 3 months of tetralysal, clear again. It came back again so I did 3 months of tetralysal and since it didn't clear completely and I was living in Bangkok at the time whitout really knowing what to do I did 3 months of doxycycline.
Doxy didn't keep me clear, but I was afraid to stop whilst living abroad so I stopped 2,5 weeks ago when I got home to Sweden.
I have now been on the autoimmune paleo protocol (very limited specific carbs, no suger, no processed food, only organic, no nightshades, no grains, no alcohol, no gluten, no dairy) for a little over 2 weeks. Besides my diet I do probiotics (I make my own kefir, eat fermented veggies and take a supplement), I take vitamin-D, fish liver oil, selen, magnesium, zinc, saw palmetto and apple cider vinegar (as shots and as a topical).
My stomach issues (ulcerative colitis which was acting up when I lived in Bangkok) are getting much better on the diet and with the supplements, but I see no improvement of my acne which slowly but surely is getting worse. Went to a derm yesterday and he went straight to accutane, which I don't really want to take but will take if I don't see improvement soon. I would love som advice or leads on how I can cure my acne without accutane. I don't really know how having almost no colon is affecting my overall health and my acne (except for having to drink more water, which I do already).
PS. I also have some sort of inflammation in my lower back that keeps coming back along with the UC flare ups but goes away after like one day of prednisone (I've taken very low doses of prednisone over the course of a month like once a year for the past 3 years, everytime I've been abroad for a longer period of time).
Thanks in advance!
Your immune system is out of control because you don't have enough commensal bacteria keeping it under control. Sadly, without most of your colon, I don't think there will be a non-pharmaceutical solution. I would also recommend accutane, which if taken for a long enough duration at a high enough dose may inhibit your TH1/17 cells enough that TH2 can take over and you won't react as badly to skin microbes.
You can try adding curcumin and colostrum onto your protocol. Of the two, colostrum is more likely to help. It is dairy, but unless you explicitly have problems with all forms of dairy I would still give it a go.
The other 'last ditch' options:
1. Ingesting a parasite. No guarantee that it will work. But if it does, it will help with all of the inflammation in your body, and not just the acne. It'll basically massively upregulate the TH2 response, so you won't have to rely on TH1 as much. Acne seems to be a mostly TH17-mediated disease, though, so who knows.
2. Bacteriotherapy. Also no guarantee, especially since you don't have most of your colon. Also a little risky, though less risky than one might think. Make sure your donor is perfectly healthy. Also incidentally has a 50% chance of curing UC. Wish you heard about it earlier :/
It really depends on how desperate you are. Accutane is the easier choice, but you may well relapse. Honestly, a combination of everything above would probably work best, including accutane. Because of how the drug works, I would take accutane for 8 months at 40-60mg/d (depending on your weight) while maintaining the paleo auto-immune protocol; then, in the last month of accutane, I would do the bacteriotherapy/parasite and begin taking colostrum and curcumin at the same time. Continue colostrum/curcumin for 2 months after stopping accutane, and also replenish depleted vitamins: selenium, vitamin D (not from supplements - get sun), sulfur amino acids (not from supplements), non-isotretinoin vitamin A derivatives (eat beef liver once a week for 2 months after taking the last pill), vitamin E, vitamin K. All of these are important for isotretinoin recovery. I also recommend drinking green or white tea (white tea is superior).
That's sort of an all-inclusive plan. Of course, I would recommend talking to your doctor about all of this if you even want to do it (not your derm). There are obvious risks associated with parasites and bacteriotherapy. Or you can just pick and choose.
One last thing: I would stop supplementing with vitamin D. The reason for this is that vitamin D isn't the only thing made by sun - there's also cholesterol sulfate, and probably a few other things. By supplementing with vitamin D, you're tricking your body into thinking that it has enough of the other stuff. It would be best just to get plenty of sun.
Best of luck!
Wow you just told me that I will never be able to cure my acne because I have little to no colon? That flat out SUCKS I've been on too many harsh meds in the past to want to go to accutane. I REALLY want to cure this naturally since I generally don't respond well to drugs.
Are you sure I won't be able to get a good enought microbacterial culture in my intestines without much colon? Can't they live in the small intestine where almost all of the nutrition is absorbed anyways?
I think you could be able to. It will just be hard. Microbes fortunately/unfortunately don't really live in the small intestine because they are highly regulated by the immune system - they are only kept where they are needed, which is in the colon, where fermentation of un-absorbable food products occurs. There are a few in the small intestine, but you won't be able to get close to the numbers and diversity you would see in the colon. What you have right now is basically an ileal environment, rich in nutrients and oxygen, and what you're missing is the anaerobic part, would would normally be at the very end of the colon, where oxygen is sparse.
I would say that if you have time to kill, you can try continuing autoimmune paleo, probiotics, and the other things you listed (except the vit D) - these are all good things (although probiotics do break some people out). There's a chance you could see some improvement at the 1 month mark or so, but if you see no improvement after 2 months, there's a good chance that you won't.
Accutane does have risks, but it's only about as dangerous as antibiotics, and if you know what you're doing, you can minimize/eliminate much of the risk. I too wish natural cures could work, but sometimes the situation we are put in calls for something more.