MRSD, thank you for your frank and informative response. However, I believe you have assumed that I have been sitting on my hands for these last few years, and when not sitting on them, then wringing them. This could not be further from the case.

First the Crohn's, as it came first. . . no actually, rapid onset severe ulcerative colitis came first. And when the symptoms came on, I had seen my gastroenterologist once before, for a colonoscopy a year earlier, which showed no cancer (both parents had colon cancer) but did show a tiny spot of colitis. He said it was so insignificant he didn't recommend any treatment. No suggestions, no diet, preventative measures, and no recommendations as to what to do if it returned. And a year later when I began the cramping, nausea, pain, bloating and then bleeding, I researched and began my journey down the road of elimination diets, including the non-gluten diet, supplements (I had already been taking probiotics for nearly a decade), massage, and acupuncture, among others. My PCP was more concerned with my elevated blood pressure than my rectal bleeding, so I had to seek out my gastro once again. By the time I got in to see him I had dropped a tremendous amount of weight, was dehydrated and malnourished, and in great pain. He could only scope me part way because it was too dangerous to continue, but we were not told that until later. He sent me home with an Rx for prednisone. I tell you this so you will know I have dealt with my share of incompetent doctors who brush you off, follow "standardized paths of prescriptions" to treat the diseases we count on them to be experts about, and allow you to languish. He never ordered a single blood test. I asked about probiotics, because I had researched and learned that flooding the intestines with good bacteria can help heal colitis. (I did not have a Crohn's diagnosis or any Crohn's symptoms yet.) He said he didn't believe in probiotics.

Less than 48 hours later my partner was practically carrying my limp and depleted body into the ER. I later learned I was the one they were watching that night to be sure I didn't slip away. The second gastro I fired in this whole nightmare told me that in my room a couple days later. (The first one I fired was the jerk who send me home with no diagnostics or treatment, save steroids.) The second doctor also spend all his time trying to convince me I should NOT have my colon removed, even as it grew more inflamed and bloated by the day, and nearly became toxic. He even cancelled my surgery the morning of because he said "I looked better." I had simply showered and put on a super-positive attitude. I fired him immediately and asked my surgeon to be in complete charge of my care. Why would I want to nurse a diseased colon with prednisone (which I was not faring well with at all) when for all that "saving" activity, all it would do was increase my risk for or even hasten the likely onset of colon cancer?

I spent the next year having three more surgeries after my complete colon and rectum were removed: j-pouch construction, stoma revision (I did not do well with an ostomy), and a pouch-o-gram to be sure it had no leaks or other issues, whereupon they discovered "Crohn's-like" growths (not real fistulas, but looked like they could develop that way) in the pouch. They slapped the Crohn's diagnosis on me to get my insurance to cover Remicade infusions, and three infusions later my pouch was in perfect shape! I had my takedown and prepared to rehab myself so I could get back to work and get on with my life. I pushed myself by adding in more and more activity that would force me to work up to the rigorous and stressful job I had hoped to return to. That summer I took my first art class, as rehab to clear the drug effects out of my head and get the right side of my brain working again. All along my partner and I had been doing crosswords and other activities to get the left side of my brain going again.

By the end of that summer of rehab and working on my body and mind, it was apparent I had some issues that might not be resolving. I did not have complete control of my bowels, and had to wear pads for protection of my clothing at all times. Many nights were interrupted with, at the least, a shower, and the worst, changing all the bed linens. I was sleep deprived as well as unable to do many common household tasks without leaking. Every leak is somewhat an emergency when you have no colon to neutralize your stools, as the enzymes and acid can cause incredibly rapid excoriation of the skin around your ****. (Why the censorship? I would rather use the correct terms than "butt" or "butt hole!") I spent so much time and money trying every thing on the market and every trick in the book to try to end this cycle of leaking and treating burning raw skin. It soon became apparent that I would be unable to handle even the commute to work without great disruption, let alone deal with an employer who was unwilling to accommodate any of my needs. My long term disability company deemed it unnecessary to even begin rehab evaluations, as my doctor was not very optimistic that things would improve very much. (Thank goodness they have improved some since then!) When my LTD company began to apply for SS for me, even Social Security did not question my inability to be benefitted by voc rehab. I was still hopeful, though, that this would all change.

Every time I have more than two or three days in a row without pain, leaks or other issues, I get excited that I may have turned the corner. It hasn't happened yet.

My Crohn's manifestation is not the usual wasting, cramping and other grossly physical issues that a good number of Crohn's patients suffer. I have belonged to several Crohn's forums for a while now, and I am thankful that I do not deal with some of the worse symptoms. No, my Crohn's hardly needs treatment at all. I now deal with the fact that I am in the 5-15% whose j-pouch was not a complete success. Nutritionally I come out on top every test. I do not have to deal with weight loss, in fact I am just the opposite, and am constantly trying to lose weight. I am having no absorbtion issues at all. It is hard when you can not eat the good, wholesome fiber-rich foods, the raw veggies and fruits, the usual fare of healthy dieters. All of those foods make my incontinence and other issues worse. No, the only Crohn's manifestation I have right now is fissures, and they are complicated by the stricture at my anastomosis and inner sphincter spasms over which I have no control, and the additional irritation of caustic stool passage. (Oh, and occasional blockages . . . but I can usually prevent those.)

The treatment that seems to be helping with that I found on my own and suggested to my surgeon. I am the only one in his group's enormous practice with my set of issues, and I guess that makes me the crux of their learning curve. I am also self-dilating my stricture, and in combination with a compounded Rx even my excellent compounding pharmacy had never been asked to prepare before.

I am not on this site for my Crohn's/digestive issues. I only list them because I believe that there may be ways I can help and encourage others. I am not looking for ways to treat my Crohn's because I do not have the active disease that many others do. I stay on top of my pouch to prevent development of pouchitis, which to this day (knock on wood!) I have never had definitively diagnosed, and I deal with the unhappy side-effects of surgery. I don't need every suggestion of diet, testing and treatment for Crohn's. When I do I will know what steps to take.

No . . . I came here hoping this site would be like my j-pouch or Crohn's site, where I could ask questions and glean information from other's experiences. I came here for neurological information. My first impression is that this site may be way more than I need at this stage. Sure, I have nights my legs and feet hurt so bad I can not sit still or concentrate on anything. I have hands that go numb before I have roughed in the figure on a sketch. I have even progressed to the point where my partner says it has affected my gait a little. Maybe I am just not that bad off. Maybe it is too soon in my diagnostic and treatment phase to be asking a lot of questions. I haven't even gotten my blood test results back yet, and everyone is hollering that I should be tested for B12. However, my gastro has been monitoring that for five years now. . . I am sure he would have said something if that were the issue.

I will check out the stickies recommended, and am especially interested in whatever I can do on my own. And I am not so dumb as to negate the difference between physiological, mechanical, or organic causes for any condition my body may suffer. I asked what the difference is because many manifestations of the same illnesse tend to still fall into the same treatment protocol. I am sure if there is a physical cause, such as impingement, my treatment will follow a different track than it will if the cause is chemical. And I understand that often one has to try everything to find the one treatment that works in their case. I have yet to get started on that journey. My neuro started me on Neurontin because it many cases that can be both diagnostic as well as a possible treatment. We also have to be mindful of any oral drugs I take and their effect on my "abnormal" intestinal anatomy, as my surgeon so delicately put it! I will do nothing that will harm the health of my j-pouch or increase my intestinal issues. . . period.

All of my doctors know that my goal is to live with as few pharmaceuticals as I absolutely need. Each of them has helped me boil down my Rx list to those with the most effect and the fewest negative side effects. Every one of them would tell you that I come to appointments armed with articles, or at least url's, regarding new treatments, new ideas, new direction. I have sought out doctors who are open and positive to alternative medicine.

I am saddened that you have jumped to the conclusion that I am negative, not taking responsibility, and "chasing rainbows." I am hoping that this is not the greeting that everyone who asks a question gets on this forum. I honor that you are the resident expert. . . we have your counterparts on our j-pouch and Crohn's sites, in fact two or three of them, and they are revered and wonderful. However, I have yet to be analyzed, categorized and pigeonholed -- based on fewer than a dozen posts -- anywhere as quickly as here.

Might I suggest it would do us all well if you stepped back from the dais for a moment and recognize that each person who logs on here for the first time need not be assumed to be in need of a lecture. We usually offer a hug first in the other forums I belong to.