It has been quite a long time since I have been on this forum, but I have recently made some changes to my J-Pouch health regimen that I am excited to share with you all.
I will start at the beginning, which was when I had my surgeries in 2009. Things went well for a while, but after a few months I developed what I believe was mild pouchitis that I ended up knocking out with a course of anti-biotics. That held for another couple months when increased frequency, urgency, and night time incontinence came creeping back in again.
I have always been someone who takes personal responsibility for increasing my scope of knowledge regarding health, nutrition, and the alternative or "natural" treatments that may be of use. So when I was having problems with pouchitis, I did my research. It seems a fairly well established consensus that pouchitis is caused by overgrowth of bacteria. I did not like the idea of chronically relying upon anti-biotics, as they can have side effects and eventually loose their effectiveness. So I dove into research regarding natural approaches to killing pathogens and/or bacteria in the body. I tried many different approaches. I tried, oil of oregano, turmeric, and several other naturopathic substances used to kill bacteria. Oil of oregano did work, but it was too powerful and burned/irritated my intestines and caused them to flush more water into my intestine, which increased urgency, frequency, and dehydrated me. Most other approaches did nothing for me. Probiotics helped delay the onset of pouchitis symptoms, but were not strong enough alone to knock out pouchitis that was already there.
So to cut the story shorter, I found colloidal silver. I did months of research on it, and then decided the risks were worth the potential reward. I know this subject has been discussed on this forum before. But in case there are some who are not aware of it, I felt compelled to share my experience with it. It is a VERY powerful anti-pathogenic substance, and kills all known forms of virus and bacteria within roughly 6 minutes of contact. It is also completely gentle and non irritating to skin and the intestines. That is the key right there with CS. You have to get it to the site of infection and keep it there for about 6 minutes at least. The ONLY risk associated with CS is a cosmetic one. In high doses for long periods of time the silver particles become lodged in your skin cells and give you the appearance of grey/ashy/blueish skin. This is called argyria.
So after discovering CS, I decided to buy my own generator. There are a few different methods for making CS, but you need to do your research and get a generator that creates smaller particle sizes, as they are most easily assimilated and flushed from the body. The more crude techniques for making CS create huge particle sizes and they accelerate the onset of argyria tremendously. This information is almost a moot point after I share how I use it now, but wanted to include full disclosure of my knowledge and experiences with it.
I drank a fairly high concentration of CS every day for about 6 or 7 years. I would drink about 3/4 of a liter every morning first thing, because you want to get it to the site of infection which is at the end of the intestinal track. This approach was curative for me. Provided I kept my consumption of carbohydrates/sugar to a minimum I was pouchitis free and healthy for those 6 or 7 years without issue. However, that is around the time that family started to remark that my face and skin was looking ashy/grey/blueish. It took me a few more months to realize they were right and that it was getting worse. But it gives you an idea of how long it takes for argyria to set it if you are consuming small particle sizes. Anyway, I'm still a relatively young man, and vainly concerned with my appearance, so despite how well it worked for my J-Pouch health I stopped drinking it.
I went a few months experimenting again with oil of oregano and probiotics and going zero carb. Results fluctuated a fair bit, but were not consistent like CS was. I started having night time accidents again and got depressed not knowing what to do.
I then had a conversation with a friend about CS, telling them how effective it is for killing infections. I had an ex-girlfriend with two very young children. Her daughter was getting repeating ear infections and I convinced her to use CS as an ear drop and hold it in her ear for 10 mins. We did this and the infection was completely gone the next morning without need for anti-biotics. She got another infection the next month, and we did the same treatment, and it was cured overnight again. So I told my friend the key to CS usage is to get the CS to the site of infection. And it was at that moment I had the lighting bolt epiphany about my own situation. I honestly felt extremely stupid that I had not thought of it before after 7 years of drinking CS. Obviously I realized that I could put the CS up the "other end". I guess I never thought of it because it always worked so well, and I didn't have the cosmetic issue until much later.
Anyway, the end of my story here is I bought two rectal syringes and starting giving myself a CS enema each morning. Each bulb only holds about a cup of water so I thought two would be more effective. I fill them both up, put coconut oil on the tips, insert slowly and carefully, and squirt it in there. I usually hold it in without difficulty for about 20 mins while I go about my morning routine and then push it all out. The beauty here is you are getting the CS right in the pouch, and you don't absorb any of it. Also to my pleasant surprise, my argyria condition gradually improved over the following 8 months or so since I stopped drinking it entirely. I read that selenium and vitamin e can help reverse argyria, so I took those for about 8 months. My skin looks pretty normal to me now, so I am very happy that I found a way to still get my CS without the cosmetic issue.
It takes me about 15 minutes each morning to do the enema and clean up, but it has definitely been worth it. No symptoms of pouchitis at all, and I've been able to sleep deeply without accidents.
I realize CS usage is controversial for some, but based on my research and experience with it, the only danger is cosmetic, and this can be avoided completely by using it as an enema and pushing it out before you absorb any of it.
I hope this information helps some of you out there struggling with pouchitis. I am not a doctor, and don't know if it will work for everyone, but I truly believe it can cure pouchitis because it is a powerful substance for killing bacteria.
For those who are interested in brewing your own (the health stores that sell it are EXTREME rip offs), I usually brew about a liter of distilled water for about 8 hours to get a potent enough concentration.
All the best on your healing journey,