[nide44]

Listen to Mrs D (and others here,too)
You will be hard pressed to find anyone here, who
disagrees with her on this subject.

Basically, all we can do is 'chime in' and ask
you to do as she says about the reading, and
taking your care into your own hands, but..... use
the experience of those who've been down this road before.
(and that means the proper use of meds that we have
tried & tested over the years, to help you)

[MelodyL]

Originally Posted by lefthanded

I am really just in the beginning phases of the testing. . . and have not yet seen the results of the latest blood work. Up until now I have had pretty normal range blood values. I will see my neurologist again in mid-May, after my EMG/NCV's have been done. By then we will have blood work results too. I will definitely know more then.


Can I ask, what difference does it make what the cause is if the symptoms are the same? Please don't snicker or laugh at this question. But when it comes to digestive diseases, it is all so personal to the patient (some things that work well for others don't work for one), and all of our symptoms are minute variations on one another's miseries . . . that I have learned not to chase every single rainbow out there. I really am not a pessimist, but just terribly realistic.

----------------------------------------------------------------------

It's important to know (at least try to know), why you have peripheral neuropathy. Until you do, it's idiopathic, and doctors will roll their eyes and just hand you prescriptions. It's depressing, it's painful, and I gather, sometimes you think it controls your life.

I can speak only for myself and my husband. I responded IMMENSELY to the Methylcobalimin. Stopped my burning in it's tracks. But when I have stressor, and believe me, we all have stress in our daily existence, I know that I have to take a step back, and de-stress. It works wonders.

My husband had so much pain he had to go on the fentanyl pain patch. This was years before he had the diagnosis of CIDP.

He went to a chiropractor/neurologist who worked with his body and mind, and taught him how to MOVE again, and he is now a completely different individual.He went from being a stiff, not moving person, to a person who wants to go to the gym every day. He can't go the gym because he has this foot ulcer because he went on the treadmill, (he is completely numb), and he never felt the sore developing.

Well, this has been a two year journey of his foot ulcer healing, then not healing, various surgeries. But today, we go to Beth Israel Hospital and he gets his shoes.

So we are hoping, that at least with the shoes, he will be able to (hopefully) return to the gym, do his weight bearing exercise (no treadmills any more), and that will pump oxygen into every fiber of his being, and that HELPS HIS NEUROPATHY TEN-FOLD.

Maybe it kicks in the endorphins, well, who knows what it does, but in my husband's case, it helps.

Also, the monthly infusions of the Gamma Globulin, have helped with his balance immeasurably. Not so much the pain, but with the balance.

His pain is helped by exercise, and when he places the massage thing on his thighs when he watches tv. That also brings blood into his feet.

I also massage him two times a day. He's like a new person after I do this. We work on this together. It's a team effort.

I do hope you have SOMEONE in your life who can give you emotional support.

Do you mind if I ask, (and this is important), do you have any major stress stuff going on?

You might not think this is relevant (but let me assure you), it's most relevant.

So anytime you want to share more of what is going on in your life, this is the place to come.

Mrs. D. gave you excellent information.

Melody

[lefthanded]

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.

[lefthanded]

Everyone, thank you for your offers of help, suggestions and kind words.

MelodyL. . . I do have the most supportive partner in the world. She slept in my room during each and every night of every hospital stay, getting up to check each time a nurse came in to see whose orders they were following, and whether they were following them correctly. She did my input and putput measurements, an unpleasant job that none of the nursing staff could keep up with. She learned to change my ostomy barriers and was there at every change. She lost her job sitting by my bed that first hospitalization . . . because WE do not qualify for FMLA, even though we ARE a family. She will go out at 2am if there is something I need. She has been far and away the most supportive and loving and flexible person in my life. I agree . . this goes far toward keeping a good attitude, and moving forward in life. Thanks, I understand the need for support. That is why I like to offer it whenever and where-ever I can. Otherwise I might have kept my digestive issues out of this forum. But they do affect how my neurological issues are treated. . . .

nide44 . . . I will take heed of MRSD's experience and expertise . . but that does not mean I will not test her approach, especially after having a presumptive assesssment as one who is not constantly seeking to be in charge of my own health and body. Even MRSD has not been down the very same road as I have (or anyone else here, for that matter) . . .

[MelodyL]

Lefthanded:

I read your post with much amazement. My god, what you have been through. I'm glad that you have such a loving and supportive partner. Give her a hug from me.

You also said: "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."

Trust me on this. DOCTORS DO NOT UNDERSTAND B-12 and how it affects nerves. I have been to many doctors, and asked them their opinion on B-12. I have been met with "oh my god, I would never prescribe B-12 unless you are anemic". I then would counter with "but it helps to heal nerves", and I would then be told "I don't believe this".

So when you are told this over and over, and then you take 5000 of the B-12 Methyl, and your burning goes away, who am I going to believe? The doctors who don't know diddly about nutrition, or my nutritionist and the people on this board who informed me about B-12 deficiency?

When you get your B-12 levels back, please post them here. Then you'll hear LOTS OF OPINIONS.

See, the normal range is something like 200 to 900 or something to that effect. Want to know my B-12 level as of my most recent bloodwork???.

2000. That's right. 2000.

Because people with neuropathy sometimes have massive B-12 dificiencies due to malabsorbtion issues. I went from 900 to 2000. Best thing I ever did.

Thank goodness, in MY case, it nailed it.

So at least when you get your levels and if they read something like 500 DON'T THINK IT'S A GOOD READING!!!!

It's not!!! But you do have major stuff going on with your stomach issues.

So you continue to do what you've been doing. You are one heck of a strong person.

Take care,

Melody

[lefthanded]

thanks, Melody . . .

I will be following up on the whole B12 issue with my doctor. . . luckily I see all of them very soon. And I will find a good B12 (I assume the methylcobalamin is the one I am looking for) and begin with that even before that time. I have had terrible yeast overgrowth in the past with B's. . . they tend to feed them in my body. But obviously this is worth looking into yet one more time.


Someone asked about stress. . . .

My response . . . who doesn't these days! I came home from my first surgery about 5 years ago and had to call the electrician, then in less than a year the plumber, then the plumber again and again (worst nightmare for someone with a digestive disorder!) and we finally had the whole house (built in 1910) replumbed! Then it was the furnace. We had the roof replaced before that became an emergency. All our cute little remodel plans got put on hold when I could no longer bring in my old salary and my partner lost her job. Luckily she found work just when we needed to get her back to earning before we went under!

In that I have also had to be self-taught in deep breathing, relaxation and meditation. Even the counselor I saw a couple years ago, who was supposed to be one of the best in the area with chronic health issues, sent me out to buy meditation CD's. All I can say is those voices annoyed me! I have since learned how the rhythms of my favorite music work much better . . . and I even trained myself to respond to them automatically. I plan to get back to tai chi soon. And once again I have signed up for a couple of one-week art workshops to push myself. I just pray there are no flare-ups. . . I have pushed before, and my body likes to push back.

[MelodyL]

Lefthanded:

Please allow me to give you a nice tip (that I use) when I am under stress. I go to my computer, and I click on this link.

http://www.youtube.com/watch?v=zyyCcjbrWOM

Now what is this link you might be asking? It's a youtube little video clip about hot air ballooning. Why is it a de-stressor?? I believe it's the music and watching the balloons being inflated and flying off. They do it in fast motion so it's not a slooow viewing. It's just the music softly playing (calms the brain), and all the lovely hot air balloons in various shapes (cows, Mr. Peanut, whatever). There are quite a few on youtube.

Click on this one. Then look to the right of the screen and you'll see others on hot air ballooning. This one is my favorite because of the music. I keep it in my favorite places on my computer.

Whenever I feel stress (I have big problems with my son and it's very sad), but it's also heartbreaking and when you are going through anything like that and you have health issues, well you need to find THAT ONE THING, that will calm your brain.

Believe me, this will calm your brain.

That and swimming with Dolphins. Now, I can't go swimming with Dolphins so I watch hot air ballooning on youtube.

Enjoy.

Melody

[shiney sue]

LH, been through many and I mean far to many of the same things as my mother..She always wanted others thoughts but she would insist on deciding
her heath problems why not she was very intellitent,when it came to her
body.. Being a nurse for 25 years,my job was to go to the Drs.allow her
to make or say no to what the Drs. had to say,if she fell she did not understand,ask him to repeat,did no understand ,walk me over to a corner of the room.I would explain it was up to her unless she asked me to speak
to the Dr.

You will take advantage of everybody's help and you so right Crohn's she
had a awful time,I couldn't be at every Dr. all the the time,but I could lay in bed take care of her at home and in the hospital..

If we couldn't find why or how bad her PN would be we would find a good
group like this,offer are help as we would except your's..You have been through pain,and PN has so many blasted reason's, I have more then I desire
different kinds oh blaaa. Your a Artist your PN and possible ct ver hard for me
can be ,well is. I can't stand those voices,I like meditations but you do need
those voices..

If people need meds, they do if they and a Dr. can work there way through that' wonderful. some people seem to get right rhrough the pain I don't,
as you say we are all different.I hope you find your own way,me I get
tired of firing Drs. Oh my mother when she got brest cancer she dicided
chemo,radiation,she wanted not to loose her hair ,this time she let the Drs.
help her..I can tell you what i'm going through,,And if you need me i'm here
at times,or leave a pm . I hope you fine what you need and your parter and
you sound strong and loving,so many don't have that. Hugs to all and excuse my hands hurt,lot's of things I must think though,and i'm tired. Sue

[mrsD]

of how your bowel problem got away from you. And now you have no large colon? Living with this cannot be easy, or comfortable.

I was born with a congenital GI defect... malrotation grade II. I have had 2 surgical consults, and both decided on conservative management. At that time
70'-80's the only successful surgeon was in Toronto. I have had one life threatening obstruction, which unblocked itself with heavy meds. But I am prone to smaller ones, which are very painful and can make me pretty ill for a week. As a result of the twisting of my organs, I have a "fast transit" situation in the bowel which is not as extreme as colitis, but does limit food and nutrient absorption times, there. So nutrient supplements have been a huge positive intervention for me, and led me to research this issue over a decade ago.

There are some things I think happening with you to bring on the PN.

1) The drug treatments you underwent BEFORE your surgery, can be very debilitating. Flagyl which you might have been given, actually causes PN. So does Vancomycin.
So do the fluroquinolones like Cipro (which you might have used). The sulfonamide group depletes folic acid. The steroids affect a long list of nutrients, including potassium, zinc, selenium, calcium, Vit D and more.

2)Once the bowel is destroyed and finally removed, all the benefits it performed for you are gone. There are bacteria there that make B12 and biotin, and Vit K. Oxalobacter fomigenes traps oxalate from food, and prevents it from being absorbed. When it is gone which also antibiotics affect, then
one becomes prone to calcium oxalate kidney stones. There is no probiotic available today commercially to restore this organism.(it is still in the research stage).

3) sodium and potassium levels are controlled in part by the colon.

4) soluble fiber is digested by bacteria and the fatty acids absorbed into the blood stream. This is how soluble fiber lowers cholesterol and the fatty acids are used to repair and build tissue.

So I do think your PN may be mostly nutritional. Doctors in the US typically tell people their B12 is normal at levels like 200 -250...which is NOT normal by any means. Japan leads the world in aggressive B12 treatment because of a huge drug fiasco ( a drug that depleted B12 ) there that affected thousands of people (blindness/total disability).
So their cut off for normal is 500-550.

So if you are comfortable telling us what drugs you use now, and what vitamins you take now, what you can and cannot eat, it would help gauge where you really are. Another area where the medical profession fails patients is with bariatric surgery. We have had some people here who have had huge issues with PN after it.
One woman who does not post here (she did at our other location in the past)
ended up with both autonomic and peripheral issues and was very ill. I've often wondered what happened to her. Typically the PN for bariatric patients starts around 3-5 yrs post surgery.

Also with that colitis, I have to ask if you had autoimmune testing.
Autoimmune issues often translate into PN... and in that case there is treatment, however very expensive, using IVIG. Glenntaj has the tests memorized for having this looked at. I would get that done ASAP so you don't deteriorate further needlessly. Besides the IVIG there are no drugs at this time to stop or heal PN. All of them are symptomatic relief only.

And drugs also deplete nutrients. Slowly the medical profession is learning this, but very slowly, so patients do not find relief from drug side effects which can be managed if understood.
example:
http://www.suzycohen.com/drugmuggers/

A very good book is out there but out of print (but I have it) called
Drug Induced Nutrient Depletions by Ross Pelton and James LaValle Rphs

Also this book:
http://www.enotalone.com/article/4624.html
This one is less technical...more the average person and a little newer than
the Pelton book.

So if you want me to look up your current treatments, I can do that for you.
It is almost the most important duty I consider myself to be here for.

Concerning probiotics -- there was a new study just recently in severely ill patients given probiotics via tube, who were found to die at higher rates than the non probiotic patients. These had pancreatitis, but there is concern that
probiotics may be harmful under some extreme medical conditions, and should be withheld.
This is the link to that paper...
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum
It is not known at this time how this information translates to other types of GI infection.

Many people with chronic longstanding disease and pain, are being screened now for Vit D deficiency. And many are being found to be very low (VERY) in this nutrient. So getting the new test, is a good idea.

Patients with long protracted medical interventions tend to rely on what the doctors say, without looking further. If one of these doctors says your B12 is "normal" the patient does not look further. You have no idea how many people have come here with this statement. And it is the most common overlooked
misinterpreted test result we see here.
Many people here keep a log of their own test results, for this reason.
The link to how to do this is in the stickies.

So yes, there is homework here, sorry to say, and it is complex sometimes!

[lefthanded]

MRSD, thank you for your extensive information. You have done some research. I have lived with this for over five years now, and I assure you, I know all I ever wanted to know and more about the large intestine! If I just overhear someone mention IBS/IBD or any of the range or autoimmune-related diseases of this continuum, I implore them to start probiotics at the very least. Eat more yogurt!

2)Once the bowel is destroyed and finally removed, all the benefits it performed for you are gone. There are bacteria there that make B12 and biotin, and Vit K. Oxalobacter fomigenes traps oxalate from food, and prevents it from being absorbed. When it is gone which also antibiotics affect, then
one becomes prone to calcium oxalate kidney stones. There is no probiotic available today commercially to restore this organism.(it is still in the research stage).

I have been taking VSL-#3 ever since the colon was removed. The research on this combination of probiotics, which come delivered on ice and have to be refrigerated, support its use for prevention and treatment of pouchitis, which is really the non-colon equivalent of recurrent colitis. In the following excerpt I have posted, it has been found that VSL-#3 is the only probiotic that consumes oxalates. Read on:

I-048. Oxalate Consumption by Probiotic Microorganisms
S. L. Daniel, R. Cox;
Eastern Illinois University, Charleston, IL.
The intestinal microbiota plays a major role in the regulation of oxalate metabolism in humans and animals. To date, most studies have focused on Oxalobacter formigenes, an anaerobic oxalate-degrading bacterium common to the mammalian gut. While much less is known about the oxalate-degrading abilities of other intestinal microbes, recent evidence suggests that some species of Lactobacillus and Bifidobacterium can consume oxalate and that the oral administration of these probiotic microbes to humans can impact urinary oxalate levels. Based on these findings, the goal of the present study was to determine if commercially available probiotics are capable of oxalate consumption. Seven different commercial probiotic products for humans (Saccharomyces boulardii, Jarro-Dophilus, Acidophilus Plus, Super Potent Acidophilus, Kyo-Dophilus, 4x6 Acidophilus, and VSL#3) and two different commercial probiotic products for pets (Pet Inoculant and Fastrack) were screened by transferring the manufacturer’s recommended dose of the probiotic product (usually two capsules) to 25 ml of anaerobic culture medium which contained oxalate (10 mM), minerals, metals, yeast extract (0.1%), and a bicarbonate/CO2-buffer system. Cultures were mixed for 1 hr to dissolve the probiotic product, incubated at 37°C for 48 hrs, and then analyzed by HPLC for the disappearance of oxalate. Jarro-Dophilus, Acidophilus Plus, Super Potent Acidophilus, Kyo-Dophilus, 4x6 Acidophilus, and Pet Inoculant cultures consumed very little of the oxalate (0-1%); S. boulardii and Fastrack cultures consumed 4.5 and 8% of the oxalate, respectively. In contract, VSL#3 cultures consumed all (100%) of the oxalate; furthermore, VSL#3 cultures actively consumed oxalate under both anaerobic and aerobic conditions. The exact nature of the oxalate-consuming activities of VSL#3 is presently unknown.
http://ieg.ou.edu/ASM2006/data/papers/I_048.htm

I also address the vitamin deficiencies that you have mentioned. You are very correct in the assumption that antiobiotic use has greatly contributed to my PN. During the year I had four surgeries Flagyl was the drug of choice, and during my first hospitalization, heavy doses. I was also on heavy doses of prednisone. At one time I had a long list of every single drug they put in my body, thanks to my partner writing them all down during that horrible year. It may have been purged when I gave up on the idea of filing a malpractice suit against my first and second gastros. (Several good attorneys said they were following standard protocol, which is scary when they get away with not informing patients of potentially life threatening conditions!)

I don't doubt my PN began before even my symptoms showed up, even though I have always taken good supplements and vitamins. I ate the diet of a training athlete the five years leading up to the onset of my illness. I was a mountaineer when I moved to Washington State 13 years ago. This disease has been an abrupt and rude twist in my life. Thank goodness I did the things I had urges to do back then, for my reasons are now coming to fruition: I told myself that I would look back form my elder years and regret not having attempted the things I have done. I now encourage everyone to go for it when a once in a lifetime opportunity comes their way.

I am on Pentasa 500mg up to 4000mg/day. I am on Loperamide hcl 2mg, up to 16mg/day. I am on Cipro 500mg, up to 1000mg/day. (The Cipro is the drug of choice for me to keep the bacteria suppressed, and it also helped close a recto-vaginal fistula. It is Cipro or it is Remicade, which of course has some pretty horrific side effects long term, and which likely would no longer be effective, as you build antibodies to it, especially if time has passed between administrations. We have chosen the lesser of the two in terms of long term undesirable side effects.) I also take Maxide to try to get fluid retention under control and keep my blood pressure down. Of course, witht he Neurontin I face ankle swelling again . . . a problem I have when the heat and humidity rise and sometimes for no apparent reason. We are investigating it, however.

I am also on a waiting list for a pain clinic. Right now I have been releatively pain free, but when my fissures flare up I want to know how to deal with what I refer to as "acute chronic pain."

Do believe me when I say I know way more about the colon and the digestive system than I ever wanted to. It comes with the surgery and the disease. I know of teens who practically could get their M.D. degrees for all they have learned living with Crohn's at a young age. Their stories are heartbreaking; I was told it is much easier on the older patient than the younger ones. Ouch! I can not imagine! After my complete colectomy partner and I used to sit and watch my stoma work. We also watched my gut go through contortions after my colon was removed, when I started eating solid foods again. I was on TPN twice through out that first year. THAT is a whole other story. . . . The intestines are an amazing organ that n one should take for granted. It is too bad it, and the terms describing it, are so taboo in our culture. People need to not fear asking their doctors or sharing with close loved ones when they thing there might be a problem.

I know I have autoimmune issues. It is believed that the whole range of bowel diseases are autoimmune related. Colitixxs and Crohn's are related to rheumatoid arthritis and Lupus and even eczema. And I know about the need to supplement and watch my electrolytes, and that dehydration without a colon is a big issue. I have been lucky, in that my pouch really has kicked in and done some of the work they hope it will in pulling water from the stools before they are passed. I rarely have what others consider normal diarrhea, and have been lucky to have fairly well formed stools. I can usually tell when I am slightly dehydrated.

As far as reading many texts on the subject, I have a hard time getting through light recreational reading. It is not that I can't comprehend the material, but that my attention and ability to concentrate have been affected by the chronic pain I have dealt with because of my strictures and fissures. Last year I underwent strictureplasty, and we hope to avoid either botox or surgery for the fissures because both carry a significant (for me) risk of incontinence. I have nocturnal incontinence now, and occasionally I am mildly incontinent during the daytime, usually in inconvenient places! In fact, I was up early today doing laundry, as last night was particularly active. Gas is a common problem, and at night it can cause evacuation without know it is happening if you are in a deep enough sleep. And I guess I got some good REM sleep in the wee hours. (My partner just got up, and siad she heard it, but didn't wake me, as deep sleep for me is so rare. . . but now wishes she had. It just would have meant a shower and laundry much earlier. . . we can't really prevent it!)

I will address eating in another post. However, I really can sum it up in these words: Trial and error!