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3 Year Remission and now flaring again!!! Looking for another Alternative

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Ulcerative Colitis
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Posted 7/25/2016 11:26 AM (GMT 0)
Hi All,

This is my first post on this forum. I was diagnosed with Ulcerative Colitis in 2011, symptoms started when I was 17 I am now 23. Since age 20 I was in remission for 3 years due to picking up smoking as my nurse at the hospital jokingly recommended it, this got me into remission for 3 years! Smoking no longer gets me or keeps me in remission (currently flaring for the first time in 3 years).

I have been on Mezavant maximum dose the whole duration since being diagnosed (also during the smoking induced 3-year remission), Salofalk enemas and pentasa suppositories used to help but also stopped working prior to taking up smoking. I have recently been doing Colloidal silver enemas, Vitamin E enemas adding slippery elm bark to both with no avail to rid of inflammation.

I have recently received LDN (Low Dose Naltrexone) and am currently on 2.0mg working up to 4.5mg to see what happens. The day after I took my first dose (1.0mg) dose of LDN my urgency went about 50% reducing BM from 6-8 times a day to around 3-4 a day (it is still like this today and am hoping for remission once I get to 4.5mg).

I will also be doing a Black Walnut Hull, Clove and wormwood enema soon once I get all the ingredients to see what will happen. I have also ordered DMSO to see if that will help. I was wondering if anyone knows of any other alternative treatments as I do not want to use any immuno suppressants.

Also I wanted to know what you guys think UC or IBD is, I personally think it is caused by bacteria or a pathogen hence the reason why enemas use to help but no longer do. To add to this, when I was 15-17 I took a 2 year course of tetracycline against my severe acne without probiotics (I should sue my GP who didn’t advise me of any damage a long term use of anti-biotics could do – The leaflet which came with Tetracycline says UC may be a rare side effect) prior to that I also had tapeworm which was also cleared by antibiotics. Due to this long term anti biotic use I think I have a damaged gut flora and also some sort of bad bacteria and my immune system cannot fight these. I may also add that I can eat any food (high carb, sugar, gluten, spicy) except for spinach as it doesn’t digest and comes out as it came in haha. In regards to alcohol, while smoking was keeping me in remission I was able to binge drink about every weekend (1 bottle of wine half a dozen glasses of spirits with mixers etc.) with no changes in stool or any signs of UC. I now do not drink as I know alcohol will definitely be friendly to my colon at my current state.

This disease makes no sense to me as smoking kept me in remission for so long. I need some sort of alternate therapy. I refuse to take immuno suppressants or steroids as I have taken steroids once (we all know they do even more damage with long term use) when I was diagnosed and these did not work for me unless being on a high dose >40mg.

Best health and regards to All
confused confused
Posted 7/25/2016 11:32 AM (GMT 0)
I believe in alternatives too but I found them to be ineffective unless I also monitored my diet. I recommend keeping a food diary to isolate any triggering foods that might be causing symptoms.
Posted 7/25/2016 12:16 PM (GMT 0)
Yeah I'm also confused about the smoking-gut connection. Wish for more clinical research. Also find it interesting that around the time I decided to stop recreationally smoking cannabis, my UC symptoms first started appearing. In my case, I honestly-wholeheartedly believe that the underlying causes had to do directly with extreme oxidative stress combined with years of eating processed sugars, alcohol binging, which lead to years of reoccurring yeast infections( Yeast/Candida/Fungus is very much related to inflamm. in gastrointestinal tract), which lead to excessive use of antibiotics (+related) then theres a whole plethora of emotional/lack of self love issues within myself I was ignoring/not digesting lol

It seems to me you are already being proactive in the alternative route. In the past I brought up DSMO/Colloidal silver therapies to my doctors and they freaked out a little haha. I think the next step would be looking into RSO/THC/CBD cannabis oils and FODMAPS diet if you haven't already. As you know everyone's genetics and UC experiences differ so you really just gotta continue playing trial and error guinea pig style. Personally I've been hospitalized for severe flare ups only 3 times over just 1 year (mostly due to stubbornness), but so far have been able to reach remission after 25 days (Today is day 25 again for me yay) by tapering from prednisone and strictly applying diet/supplements/cannabis/general well being. However I know the second I put a trigger food in my body it will effect my gut's progress. Been contemplating a juice fast to continue the healing- once it's proven I'm in clinical remission. My old GI kept encouraging the continual use of medications for maintenance/in case of a reoccurring flare up, but why would I do that when I've already changed my lifestyle AKA maintenance for the rest of my life.

It's great you are taking matters into your own hands and not giving up. Hope you find what works for you!
Posted 7/25/2016 12:21 PM (GMT 0)
I have done many, many alternative non-RX things and 95% were negative or neutral. I personally wouldn't do a black walnut enema because that area needs healing not trying to kill bacteria and would continue with mesalamine enemas while seeking out other alternatives. Vitamin E sup/enema is fine, dunno about DMSO or colloidal silver.

If you have not tried VSL#3 plus other "known to be good for UC" probiotics you should try them one at a time. It can take time for the good probiotics to get settled in and some pro-b's are good/bad depending on the individual gut. VSL and reuterii(Cardioviva) have medical studies backing their efficacy.

There is no sense to UC which makes it hard to say "This is good to do" especially with diet modification. So individual. Consider doing at-home FMT for hardcore good bacteria repopulating.

I agree with you that UC is bacteria related, loss of good guys to the point of ulceration and bad things happen. Resistant starch foods have been my gut's best friend (sorry spinach is a no-no for you, for me it's miraculous).

There are many alternatives on past forum threads. And I think many may be listed in the sticky posts at the top of forum posts. Settle down for a long read to make notes about what to try next.

Good luck.
Posted 7/25/2016 2:36 PM (GMT 0)
If you try dietary change ideas, taking notes with a food journal, you might also take notes on how your acne situation is.

I say this because there is a good amount of debate in the medical community over acne and diet. Some will say diet plays no part in the formation of acne. Typically medications/antibiotics are then prescribed. Others point out that only 2 poorly done studies say diet plays no part in the formation of acne. There are a few thousand studies showing diet plays a role in acne. One book I enjoyed on this debate was Dr. Loren Cordain's.

I bring this up as I've done dietary changes to help my colitis condition. Of late I'm doing very well, knock on wood. I've noticed that at the same time my gut is better, a rash/ acne problem has gone away. The rash actually went away first before my colitis improved.

It isn't possible to say the two are connected, but I suspect they are.

Best of luck.
Posted 7/25/2016 3:47 PM (GMT 0)
I tend to agree prior heavy antibiotic use combined with genetic vulnerability and resulted in IBD.

I do not agree it is "caused" by a pathogen, although in some cases a pathogen could be the trigger. But whatever the cause, it does seem to be autoimmune, so the cure is not as simple as removing the trigger (whether it is a pathogen or not).

On average, in the long run, steroids do more good then harm or they would not be accepted medical practice. However nobody is the average person, and many will suffer more long term cost than short term benefits. We tend to hear a lot form these people, and not so much form the folks who were greatly helped by steroids. Just saying.

I hope you can find some nutritional or alternative approach that manages you symptoms, or even better gets rid of the underlying inflammation. Good luck. Some have done this.

@Nat: There is some research on why smoking helps. We I have time I will chase it up and post an abstract.

You might also consider trying another form of mesalamine. Perhaps one more targeted to the colon than the granules.

You might also consider Uceris, which has less systemic effect than other steroid options.
Posted 7/25/2016 3:57 PM (GMT 0)
Like others recommended- watch your diet and keep a food journal.
Paleo, SCD, Fodmap, Gaps all are popular diets for UC. Whatever diet you choose to do - watch your symptoms and move on accordingly.
Posted 7/25/2016 4:15 PM (GMT 0)
Hi and welcome. There's lots of alternatives mentioned in the resources thread at the top of the forum. They are numerous and I'd try not to get lost in the forest. I would encourage you to not entirely dismiss the prednisone and immunomodulators as they've helped many of us greatly. I'm an impatient person, and prefer hitting the flare problem hard with multiple reasonable approaches. And that would be both alternatives and traditional medications. Good luck,

My line of thinking is uc is an autoimmune disorder (or at least an immune deficiency). There are a variety of genetic variations we possess that a trigger ultimately causes to flip a cascade of normal immune and gut flora to get out of sync , go awry into a perfect storm.

Antibiotics are cited by some, but my case directly contradicts it. My last course of antibiotics was in high school, yet I developed uc in my early 30's.
Posted 7/26/2016 3:32 AM (GMT 0)
I'm a fan of Metagenics UltraInflamX. It's pricey but give it a shot.

After prednisone and Imuran messed me up via crazy side effects I said screw it and went alternative.

Now years later I am still just on Metagenics and Asacol.
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