Is anyone else like me?

History: I am a 55 year old male and was diagnosed two years ago by colonoscopy and gastroenterologist. I have never been prescribed prednisone (for my UC) or immunosuppressants and don't ever want to be. For quite some time I have been taking 400mg Asacol, 2 pills 4 times per day and VSL#3, 2 pills 4 times per day(900mgs per day total). I have tried several other natural treatments with little or no success (so far) and a prescription antispasmodic which did nothing. Actually my current treatment regimen has made me pretty much totally normal, which leads me to my subject title question. I have basically no UC symptoms at all, zero, notta - except I still have frequency of several times per day (6-12) with pretty much normal stool plus mucus. I have probably 3-4 actual BM's per day, with the rest of the bathroom times consisting of gas and mucus only. I have no diarrhea, no blood, nauea, vomiting, abdominal pain, cramps, fever, loss of apetite, or weight loss (in fact I have to continually watch my weight as if I didn't have UC at all). The majority of these UC symptoms I have never had, ever, except for diarrhea and blood (before my current treatment regimen). I have found diet changes to be mostly useless . No matter what I do I still can't get rid of the frequency.  Is anyone else like me in basically being symptom free except for the frequency?

Footnote: I am almost 100% sure my UC is a result of the Epstein Barr Virus as my UC started while I was in the hospital for what was later diagnosed as MONO. My gastro's tests for hospital related bacterias and viruses all came back negative. I have found medical evidence that the EBV has been detected in the colons of several UC patients and is suspected as being the culprit in many autoimmune diseases. I have recently embarked on a new path of trying to treat the EBV instead of trying to treat my UC. I will soon be trying DGL licorice and possibly Monolaurin, as well as some other either natural antivirals or prescription antivirals (if a I can get a doctor to go along with my thinking).

 

Welcome to the forums Gary,

Those 6-12 bowels a day do sound like some pretty serious symptoms -how long has it been like this? Was there ever blood?

My uncle was finally diagnosed with celiac after years of just having to use the bathroom several times a day. It might be worth it to test for food allergies.

An outside lab stool test may prove helpful in your case to find out what is causing your auto-immune condition and how your immune system and gut are reacting, as well as the ratio of good to bad bacteria in your gut. I would suggest Metametrix Labs for testing, as they have really helped me determine what i'm dealing with here, and how to tackle my condition a little better.

As for DGL, I'm wondering why you are choosing this supplement as a form of warding off anything bacterial related? My parents stand by the supplement for the purpose of easing acid reflux or indigestion.

Stool testing usually does require a middle man, but insurance may cover for Metametrix labs depending on what type. Doctors are so keen on telling their patients to just not bother with asking questions about the auto immune subject, because they treat with medicine and nothing else. This isn't bad, but for some people, it takes alot of patience and time to just treat the issue, rather than actually getting to the bottom of it. For example, through the testing, I found that I have a large amount of yeast overgrowth -and a parasite, that really attributes to why I may have auto immune in the first place. We also tested what meds would kill the yeast bacteria, and most of them proved unsuccessful against this vigorous yeast. My doctor and I now tackle my issues a little bit differently, but supplementing. And, I also did stool testing upon my colonoscopy diagnosis, everything came back 100% normal. This is just something to think about from another perspective, but its your call, and I know alot of people are happy to help on this forum.

DGL is deglycerhyzinated Licorice, and can help treat ulcers and acid reflux, but the glycerhizin is removed, which in our case may help stimulate the adrenal glands and awaken the body's natural cortisol (anti-inflammatory to regulate the body). So it's your call here. I made Licorice Root loose leaf tea for about 6 months upon diagnosis to act as another anti-inflammatory.

You're daily fiber intake may need to be looked at, fiber, both soluble and insoluble can act like a scrub amongst your intestines and create more inflammation.

Try cutting out refined sugars and fruits, maybe grains/gluten free too and see how you feel. :)

Stereo, I like the further stool testing idea but don't think my doc will be into doing that. He hasn't been real receptive to stray outside the book. I'll ask next appointment. It some ways I like my doc and in others ways I don't. I like the fact that he doesn't give me any BS and doesn't lie to me about treatment options (which many do) and isn't gung-ho on surgery. He knows that prednisone is a crock and that the other immunosuppressants are bad news too. Unfortunately, like many other docs, he would rather throw his hands up in the air and admit defeat rather than trying to look for the real cause of the disease. Unfortunately again, most docs with autoimmune diseases don't even try finding out the real cause because according to the book, it will usually never be found, and even if it is, it probably won't effect treatment options anyway.

I don't eat much fiber anymore other than just a fairly normal diet as this really does contribute to gas. As far as sugars go, I cut back drastically for about 3 weeks once and it had virtually no effect on me whatsoever, although I have noticed that fruits are bad for me. I've never really tried the gluten free thing because I thought that that was kind of connected to the celiac disease thing, which I have pretty much ruled out as the cause of my UC. I am still almost 100% sure that my UC is directly related to my bout with the Epstein Barr Virus but there is basically no known way to irradicaate the virus from my body, although I am going down the natural and prescription antiviral path. That's why I'm going to try the DGL but I believe the antiviral properties of licorice are actually due to the glycerhizin, which has been removed from the DGL. It may help anyway. Next step would be Monolaurin which has been shown to help both EBV and UC and appears to be a safe natural antiviral.

Casie: Sorry to hear you are a member of our family and that the Immuran is doing a number on you. I so far refuse to do prednisone or the other immuno's such as Immuran. It seems like even if they work they wind up being more bad news for you than if you just lived with the UC in the first place. So far I am doing quite well, a lot better than most, but the frequency just hasn' let up even though my other symptoms have pretty much all but disappeared.

You may only be having a BM 3 times a day but doing the mucous thing 6+ additional times isn't good. I would put in a call to your GI asap. The enemas could really help. Why wait till January? I can't believe he thought this amount of bathroom trips was ok. My doctor sure wouldn't and neither would I.

I have tried a lot of various diet changes with no real change. Diet seems to have almost no effect on my condition, as long as I stay away from a small handful of things. I am totally convinced that my underlying problem is my Epstein Barr infection. I came down with UC while in the hospital for Mono, I have found a few others who also came down with UC at or around the time they had mono, and I have found medical evidence from doctors that the EBV has been found in the colons of some UC patients. Since the EBV stays "dormant" in the body for the rest of a person's life my theory is that it is in my colon, my immune system tries to continually fight it, and this process causes the inflammation in the colon, which is the root cause of my UC. The trouble is there is no known way to irradicate the EBV from my system. I believe prednisone and immunosuppressants could actually help me but I refuse to do either as I know that both options are more harmful to the body long term than just living with my UC, especially since I don't have a spleen. So, that leaves me with trying various antivirals in an attempt to control the EBV infection, which hopefully in return will help my UC. This is a new path for me that I haven't actually started yet but am very soon. I am going to try this road first and if it leads me nowhere I am going to check into the enemas. I'm hoping that I won't have to go down that route as that means going back to the doctor. I don't really have anything against doctors in general but for autoimmune diseases they are often useless. For all the info they know about autoimmune diseases they don't know what causes them and they don't know how to cure them, so, in essence, what do they really know? I had one autoimmune disease in the past and the doctors were useless for that as well. It took me 9 years before I "cured" myself of that, with no real help from the medical profession. I don't fault them for not knowing but there is always a root cause of a disease but if you don't even try looking for it you will never find it. They are just too content to go by the book that says you will never find the root cause so they just try treating the symptoms. I appreciate everone's advice and will add it to my knowledge and options.

Post Edited (garylouisville) : 8/12/2012 10:41:38 AM (GMT-6)