Concerns about malabsorption.

RJG,
It is an evolving science...When I had my k pouch done in 79 the first concern was not absorbtion but survival. When I asked the surgical team about absorbtion I was told that if I could gain weight then I was absorbing just fine...(I did gain weight)...I had a medical mother who was very involved in nutrition and alternative medicine so we did a lot of suppliments and juicing...I also took iron shots, vit B shots and all sorts of fish oils, and multi vits...plus protien powders for shakes with kelp and lesitin + desicated liver and a boatload of other stuff...I went to see Chinese doctors who gave me various herb mixtures that smelled like dead fish but seemed to give me my energy back...so I am constantly searching for differnt ways to give my body a lift...
I had an excellent GP for about 20yrs who was a naturopathic specialist too and she did a lot for me with Oligoelements (Copper/gold/silver for immunity, silicium for healing...) but yes, you have to take your life and your health in your own hands and do your own research...Yes, Glabladder seems to be a problem for some of us (my Gp treated it with Fumeterre, artichoke, lemon and diet for about 15 yrs but once I stopped doing what I was supposed to it got out of control)...
Keep doing your own research and keep us posted on your results...I would love to know.
Sharon

I am so thankful to those of you who have posted on this topic. I am just starting the process of learning about the absorbtion process involved with digestion/with a j pouch. I feel like my pain levels/lack of energy are very much caused by not being able to absorb the proper nutrients and the sort. I am going to get this figured out and make a come back with my life!

Sharon, FRH, I truly appreciate your responses, suggestions, inputs, experiences... I must re-read your suggestions and digest the information. It's strange how overwhelming just a little bit of information and changes to routine can be. It's so much easier pretending that nothing is "wrong" or leaving everything in the hands of the specialists. That said, with experience, the latter is rarely efective, since it is clear that modern doctors focus primerily on pharmaceutical and surgical remedies... (The digestive issue is not that of synthetic chemicals but of something truly organic... when they remove our colons and our rectums and reconstruct our ileums, they are handling organic matter and not metal or plastic parts of a machine...) And the former is what I imagine is a common fantasy/illusion we may create for reducing mental stress. "Come to terms with your reality", I hear myself repeat to myself regarding FAP/Gardner's Syndrome/J-Pouch/life in Mexico; the Mexico of today and not of yesterday... Before having my J-Pouch surgery at the age of 32, I believed that "God" gave me this issue and that I must respect the situation... From at least the age of 12 (when I was informed that I had inherited my fathers FAP that killed him at that age of 34 (budding star Opthalmologist who had just saved a girl's eyesight after having been hit with an egg on Mischief Night and was taken to my father for a second opinion since the other more experienced doctors said there was nothing that could be done to save her eyesight) I lived with the idea that I wouldn't reach my father's dying age... It seems much easier to accept one's destiny and not do anything. And then "god" or the spirits or whatever it is that intervenes when your mind or "spirit" isn't being "responsible", sends someone your way who inspires you to "do the right thing"... Falling "in-love" and then the relationship fades suddenly when the job is done and "Voila" you're living with a J-Pouch and now approaching the 10 year anniversary of having surpassed your fathers dying age... And now I have a dull pain somewhere around my left kidney and in the upper abdomin where one would think is where the Liver resides. And the Gastroenterologist did all the typical listening and tapping etc. and prescribes a Vitamin B12 shot and an anti-intestinal cramping drug, and a visit with a Cardiologist for what he believes is Hypertension in the area of the left kidney and says that I don't need an upper-Endoscopy and that there isn't a medical emergency connected with the Gallbladder, although it is necessary to remove it in the future... So, the Cardiologist prescribed blood pressure medicine and blood tests and a sonagram of the heart for two weeks from now to see the effects of the BP medicine. However, at the last minute he prescribed a pain reliever for what he believes is muscle pain and not digestive tract problems. And this pain reliever for Arthritis and Rheumatism by Merck is banned by the FDA in the United States because it puts you at risk of Heart Attack. Now answer this question: HOW DID THIS INFORMATION PASS UNSEEN BY A HEART SPECIALIST? (Mexico is a dumping ground for pharmaceuticals banned in the U.S. and Europe; it's also a dumping ground for flawed and outdated technology removed from "American" and European markets and sold at twice the cost of those former markets...)

Ok. I've rambled on a bit. Much more than expected. I guess I'm awakening... I don't know if you are aware that I live in Guadalajara, Mexico. Although Mexico is between #10 and #15 of the world's richest countries (believe it or not), the disequality (#2 in the world) here is such that what you would find in the average city in the U.S. or Europe, you only find for the upper upper middle-classes here... And most of the modern technology (if you can find it here) costs 30-40% more here than in the U.S. I will look into the blender. But, I highly doubt I can find it here... We have a blender; an Oster that has a reversable motor for blending ice for Daqueries. Aside from being an artist, my #1 passion is (or was in New York City) international cuisine. So, it shouldn't be surprising that I would first seek help from diet; fruits, vegetables, grains etc, than from medicine. Again, I live in Mexico 10 years at the end of January. I crazily moved here 1.3 years after having my rectum removed; J-Pouch... I met my wife Margarita 3 weeks into my journey here, we married 5 months later and have worked very hard to create a life together over the following almost 10 years... We don't have the economy and she doesn't have the legal right to travel with me to the U.S., since she is of the poor farmer class (her father is a poor coffee farmer; we have dedicated the past 9 years trying to help pull them up from "their bootstraps" against all odds in this incredibly racist/classist country). Yes, I am mixing themes and issues... However, it is the work we've accomplished that now enables me to change my diet (worrying less about the costs), pay for doctor's visits, pay for medication, think about possibly buying a very expensive blender and hoping that none of this drains too much money out of the coffee business reserves. Poor financial management and poor planning can lead to a worse economic, relationship and health situation...

Thanks again for the suggestions. I will look into the enzymes, although I am sure it will be just a bit complicated explaining what I am seeking in the local homeopathy/herb shops here in Mexico... My concern is that they may give me something for something other than the issue at hand... And, as for return policies here in Mexico; if the stores are from the U.S., like Costco, no problem. However, the typical local Mexican stores generally have a no-return policy...

I'll reread your comments. I'm sure that there is much I don't yet remember or understand.

Thanks again.

Ross

Thanks FRH. Yesterday I bought Yakult at Costco. Today I went for blood tests for Vitamins B, D and Potassium... along with an ecogram on my abdomin, which shows that I've greatly decreased the gallstones in my gallbladder. I don't know if you knew that that is an issue for J-Pouchers, Crohns, etc... 7 years ago I had become "fed up" with doctors, medicines and surgical remedies (I had only re-set foot there for a few months) and decided to research natural remedies/diets for accomplishing what the medicines and surgeries accomplish and, voila, they actually worked... The ecogram or sonogram showed that the gall bladder isn't inflamed and that there a much fewer gallstones... 7 years later and I hadn't had removed the gallbladder. I guess it's not such an issue afterall. I will look into the blendex etc. I firmly understand what you mean about the fiber or unprocessed foods causing problems in your J-Pouch... Yesterday I decided to eat All Bran and then chickpeas later on... throw in cauliflower, brown rice and an apple. Truthfully, I've never had problems with apples, although they come out as they entered the esophagus... Chickpeas. Would you believe they are considered the #1 dietary fiber? A few cups of chickpeas per week and you don't need any other fiber. However... The big "but"... Chickpea fiber doesn't begin to break down until it reaches your colon... And thats when we return 600 years and realize that, maybe just maybe, if you travel due west, you will fall off the edge of the earth... It's one place I just don't understand. The colon is where all of the healthy bacteria break down dietary fiber and proteins and produce (if I am correct, vitamin K or H or potassium...) along with electrolytes and other amino acids etc... So, if you don't have a colon, and the J-Pouch doesn't really absorb... Where are all those friendly bacteria going when you injest them? I've been reading much on the internet. But the information is very sparce or vague... And basically no one wants to talk about J-Pouches and Colectomies and Nutrition... And, here on the J-Pouch group we are just our own test rabbits sharing personal experience. However, when you want the sure bet... But that's the conflict between the religion of science and medicine and that of the return to the medicine men and white witches. And here we are, products of modern medicine and science realizing that maybe we must return a few hundred years to the medicine men and white witches... Enough to give one a headache due to the confusion and socio-political conflict... Thanks again, Ross

Thanks for the information. I'll look up Jessica Black on Facebook. I was thinking earlier today, "boy, had I thought about studying nutrition in college...! At least I could be in a proactive field at service not only for me but for many other people." As for you final statement about statements from your GI doctors or surgeon, it's too bad none of them experience the diseases they "cure", otherwise, maybe they would be a bit more flexible and sensitive and, possibly that much more progressive, since now it is they who must truly encounter a cure, or at least an adequate relief. The idea is that, at least for the FAP/Gardner's Syndromes, they supposedly are saving their patients. However, they don't sufficiently take into account the style of living their patients must experience later on. But, I guess that's just it: Supposedly one's life is worth all subsequent suffering (at least in the U.S.) So, they are saviors. But, I don't believe that's actually enough....

Ross,
First off, I have a semi-fancy blender but I no longer need to use it...I bought myself a 'hand held submersion blender'...I looks like a metal arm with a blade on one end attached to a hand held motor...they come in different qualities and with different gadgets attached but I bought myself a really good Philips one that comes with a couple accessories (2 different sized bowls with blades for chopping and an egg wisk)...I use it to blend everything in the house...I make soups out of every leftover veggy that I can find at the market (a lot of leeks, parsley, green beans, celery, potatoes, tomatoes...I just throw it all into a pot, cook it and blend it still in the pot) and then add my spices later....very economical that way...same with the chickpeas...blend them. As for the digestive enzymes...there is a much cheaper way for you to get them...Paypayas. Eat them ripe with lime juice squirted on top...it does the trick just fine. You can blend them too into a smoothie...same with mangos. Most yellow fruits have a good dose of digestive enzymes so you can make smoothies (adding passion fruit is great for the flavour and fiber but strain them to avoid the seeds)... also creamed soups are very pouch friendly and if you throw a potato and tomato you get all the potassium that you need.
As for the colon...yes, its major function is to absorb fluids (and the water soluble vitamins & minerals that go with it) but the small intestine does some of the job too and as time goes by, it takes over a good part of the functions...to the point where the small bowel can expand its functions greatly...my pouch is over 30yrs old. I absorb liquids very well and although I still have some defficiencies I do ok with a little bit of help from diet and suppliments...
Blending does help, juicing too but don't over do it or you may just end up getting the opposite result and irritating your pouch with too much raw food and roughage...it is all a quesiton of dozage and moderation.
Sharon

Hey FRH, I wasn't notified of your message. I'm just noticing it now. Thanks for the links. I'll check them out later. At the moment, I'm not feeling too well...

Ross

Hi Sharon, I just lost my response to you... Thanks for the suggestion. We live in the land of Papayas, Guayabas (guavas), mangos and passionfruit. Margarita just prepared Carrot Pineapple Celery juice. About the digestive enzymes; The other day I bought Yakult at the local Costco (don't know if you have that store in France). I drank one bottle per day, with the exception of today, and find myself with lots of gas, irritation and running to the bathroom to little avail and almost nausea... Granted, could be a different issue; Brown rice, bananas, thai cuisine prepared with fresh turmeric and cauliflower, one week of a blood pressure medication... But, it seems to me the more likely cause being Yakult. Have you heard of pro-biotics causing digestive problems?

Ross

FRH, I appreciate your comment about "hope of being able to feel like a normal person again..." At the moment I am confronting the possibility of a malabsorption issue that is causing significant muscle pain in my legs. I'm sure the problem has been developing for the past many years and is just beginning to show itself, which is a major concern because, like diabetes, when it begins to "show" it's because the issue has become complex. Back in 2005 an upper endoscopy showed that my duodenum was enflamed (duodenitis) and that I had a slight iron deficiency. I figured that changing my diet would change everything. I did reduce the number of gallstones sufficiently to remove the need for removal of the gallbladder; just had an ultrasound showing a normal gallbladder. However, I had no idea that coloctomies and ileal-anal pullthroughs (J-Pouch) create such a risk of malabsorption.. So, now I'm back to the drawing board. Blood tests return in a few days, checking for deficiencies (my English spelling mixes with my Spanish...) of Vitamin D, Iron and Vitamins B... However, since I'm not connected with a specialist, I must ask for tests as I realize their importance; meaning that I believe there will be a greater need for tests when these come back. I try living within the illusion of being a normal person so I can accomplish the best I can what I seek for myself in life. However, these days of concern and discomfort are distracting. The truth is ever since my father died (when I as 4-years-old) of the disease or syndrome passed to me, ever since I was diagnosed with FAP/Gardners and had the colectomy in 1983, I've never lived as that normal person amongst my peers, since there was always something that set me (or set them) apart... 39 years have passed since my father's death at the ago of 34, the age that I believe I was "reborn"... Don't get me wrong, my life isn't ruled by his death. However, something related to his death has shaped much of my life and what connects us on this group... I've accepted the best I can that almost no one (not even my life) can truly understand what we live. And, as much as you and I exchange ideas and information, I know that your experience is very personal and different than mine. In as much as any of us shares what seems like private issues and taboo issues if brought "public", we know deep within that no one truly enters this private world we live. And even if they were with us in the bathroom or sharing the same bed the nights we can't sleep, even if they see our expressions of concern, discomfort and exhaustion, they still haven't entered into our truly "private" world. And not because we don't invite them, but because true human experience isn't truly shared, just as we can't truly explain what is love and what bonds us with others that may be the same thing that supposedly breaks that bond; love bonds you and love separates you, because love is spiritual and the spiritual isn't about value systems of good and bad, but about where it is we must go through our experiences in life. One of those experiences is the "illness" that brought us to having the surgeries... The greatest thing that may have occured in your life is the struggle you live that may make you stronger, more intelligent and possibly more capable of putting things into perspective and capable of better distinguishing what is truly valuable in your life. So, maybe, you'll never truly be able to be "normal" and maybe part of your journey (destiny) is to not be normal so that you can learn more... Wishful thinking? Maybe somewhere down the road "someone" will show you the true reason why you suffer this style of life and truthfully what it is that you benefited from living through this...

Thank you FRH,
I have always been very interested in nutrition...probably because I have always been sick and been more conscious of it than most people...plus my mom was a nurse, daughter of 2 pharmacists and everyone in the family was interested in food interactions, dietetics, juicing etc...she taught me a lot about those things and I studied nutrition on my own from the age of 16...(I probably would not have made it this far if not)...I understand food allergies, sensitivities and malabsorption...I also understand the role that malnutrition can play in our lives even if we look 'healthy'...I used to juice a lot (mostly carrot based with various fruits or vegetables and herbs mixed in) and practically lived off of suppliments for my first 10 years here...(too broke to buy food, I brought all of my suppliments over 1xs a year from the States...people would make fun of me back then because the French believed in eating healthy but not taking suppliments)...I used a lot of fish oils back then (halibut and salmon) and took extra Vit E, A and D because of the lack of nutrtion in my life...I am lucky that I did...I ate a large amount of French cheeses too (blue and roquefort) which went a long way to keeping my intestinal flora happy (here the milk is not pasturized in most cheses so there is more good bacteria in it)...our bodies and their intestinal health is a balancing game and we have to practice daily to keep things right...I do very well on Yakut or the other similar probiotic drinks...But they are not medications...they are commercially available marketing products that are there to make the manufacturer money and not pharmacuticals...so be ware...they have tons of sugar in them and may be the cause of your pouch upset...I use them occasionally while I am on antibiotics but not on a regular basis (prefer to eat a piece of blue cheese instead )...
RJG, If you are a runner and have been running for years then I do not think that the muscle pain is from deficiencies caused by your J pouch now...it may be that your digestive process has changed with time and you are not absorbing well or you are taking certain meds that are lining your stomach and causing a barrier between you and your digestion or the fact that you are almost 40 and things just do not work the same at 40 as they did at 30 or 20...but keep up the research...I find in very interesting and informative...and if you find and answer please let us know...
For now, Merry Christmas to one and all...stay healthy
Sharon

Sharon, I was writing a long response to you, but forgot to turn off my touch pad which led to the unintentional and split-second selection of all the text and the immediate deletion. Truthfully, I don't know how that happens but it happens regularly. In anycase, I took that as a sign to not be writing and have been painting today. I'll get back to you tomorrow.

Ross

FRH, If I offended you, it was unintentional and I'm sorry. As for the small intestine... The J-Pouch is constructed by the last segment of the Small Intestine; the Ileum... I have FAP/Gardner's Syndrome, which creates the risk of Duodenitis (the inflamation of the first part of the Small Intestine; the Duodeno)... The Colon is responsible for the production and the Absorption of Potassium... Personally, I don't believe that the J-Pouch or the Small Intestine ends up taking over the work of the Colon the Ileum... I truly believe that every person's body is different and responds differently to their disease/genetic predisposition. Of my Paternal Grandmother's 2 sons and 6 grandchildren, 7 of us inherited the disease that killed her when my father was a boy and that killed my father when I was 4-years-old. However, it did not kill my father's older brother and it did kill his older brother's oldest child with a brain tumor at that age of 16... My younger sister's polyps disappeared after her colectomy. Mine didn't. So I ended up with a J-Pouch 20 years later and she ended up with Thyroid Cancer 13 years later. My thyroids are fine. One of my cousins has horrible problems with desmoid tumors... Two people absorb B12 through their J-Pouches, one person doesn't... My cousin's wife lived with his FAP/Gardner's Syndrome complications and defecation issues and pains and other things and his concerns about their children inheriting the disease or syndrome and all the issues were my cousins. And then suddenly she developed Breast Cancer and had a double mastectomy... No one knows who's experience is who's and truthfully what will be better or worse for who... For all I know, nothing more will occur for me. Or maybe something will appear... Or maybe it will be my wife... There are no guarrantees. And somehow you learn to survive and appreciate what is truly valuable, the hard way... When I mentioned not being normal (haven't returned to the original message), I imagined you suffer from Crohns (as do most J-Pouchers)... And if you suffered from Gardner's Syndrome... Well, that would mean that you leave with the complex issues for many years, many years before having the J-Pouch surgery... and that you've lived with a very difficult situation for a very long time (without suffering with Breast Cancer)... Not being "normal" person who only worries about how and when they will die and how much they will have before they retire, gives you the opportunity to relate towards life in a more complex and less naive way... Everyone's experience is extremely personal and unique. I shouldn't have grouped us all into my way of relating to my experience, assuming that you experience the concept of "normality" as I do. As I said earlier in the message, I'm sorry for offending you. It wasn't my intention.

Ross

Just an FYI - most j-pouchers do not have Crohn's.

kathy

FRH,
I will look into what I can find in the homeopathic dept to see if there is anything to naturally slow things down...I was on lomotil and codine to slow down my guts from 9-18 until I got my pouch and I am sure that it wasn't the best thing but it was what was required at the time to be able to have any life at all...while you are living it you do not ask too many questions...you just do what is required to move forward...Life, throws a lot at us...And yes, others make us smile with their tiny little problems but we need to be indulgent with them too...They cannot understand what it means until they have lived it...that is just the way life is...I had vaginal cancer at age 23...it was not a 'fun' cancer...I couldn't even talk about it until very recently...it was one of those rare cancers that people snickered at and thought was 'funny'...I wasn't laughing much at the time. It took until the age of 33 to get rid of it...a lot of pain, surgeries and a life left suspended in the air...I couldn't date, marry or have a normal relationship with a man at the time...so yes, I value every single moment and every single gift of love...but back on topic...I will see what I can find for you as an anti-motility herb or tea and let you know...
As for the absorbtion issues...as stated, we are all different...no two diseases are alike and no two people react the same way to it...we need more research into the subject and more people interested in it...
Sharon

Imodium is not addictive and does not require increased dosages over time.

Sue

I can take 8 Imodium, 16mgs per day and stop cold turkey. There's not even the tiniest, fleetest amount of withdrawal symptoms. I've been taking it for more than 20 years. Lomotil is a prescription drug but I've never heard any adverse reactions from it either. So if you think you'd like to try it, you can do so without being too concerned.

kathy

A letter I just wrote. I put it here since I don't want to write it again. You may find it informative:

Have you read that taking Vitamin D and Calcium suppliments reduced blood pressure? I'm currently reading a study of Vitamin D deficiency and hypertension... Last night I read that potassium deficiencies causes a rise in blood pressure and that the beginning of B12 supplimentation causes a dramatic lowering of potassium levels in the blood, which explains why I experienced pain in my calve and foot muscles the day after injecting myself with B12. The blood pressure medication also causes decreases in potassium because it is also a diuretic. Imagine that. Having the colectomy and then the J-Pouch creates a chronic biological diuretic putting me at risk of having vitamin and mineral deficiencies, especially that of potassium due to the constant release agua, or the lack of absorption of agua in my intestine, causing a lack in retention... So, how is it that a cardiologist prescribes a medication for someone who lives in a typical diuretic state, a diuretic? The risk of taking Micardis Plus is the cause of Kidney disfuction, I believe caused by deficiency of Potassium. If the patient has kidney disease, they cannot take Micardis Plus. Micardis Plus is prescribed if the patient had problems with a cardiac medication prescribed for those with heart disease or angioplasties... And the highest prescription is 80mg. Normally they begin with 40mgs However, 20mgs has been shown effective for lowering blood pressure. Now, why did he put me on the highest level? And why didn't he order blood tests and vitamin/mineral levels before prescribing BP medication? Did I tell you that he prescribed a pain reliever banned by the FDA because it creates risks of Heart Attack? Now, tell me, how is it that a cardiologist would prescribe a pain reliever for abdominal pains near the kidney that put his client at risk of a heart attack? And, before prescribing the BP medication he didn't do tests on the kidneys? How is it that a GI doesn't have an interest in doing an upper endoscopy for an FAP/Gardner's when, amongst GIs it is common knowledge that FAP/Gardner's must check their stomachs and Duodenums every 2 years? How is it that he didn't want to do any examinations of my blood when I complained of pain in the region of my left kidney? Well, before getting riled up last night, I had already gone to a clinic for an Ultra Sound and blood tests, although not one of those specialists requested them. I get back the tests on vitamins B, Iron and Potassium tomorrow or Tuesday. I receive the results of vitamin D a week later. And I am wondering if I should remove myself from the BP medication before the results on Potassium... Afterall, one can lower their BP with increase Potassium, Calcium and Vitamin D in their diets. The question is if I have a malorbsorption problem. However, that isn't an issue of taking or not taking BP medication. It's a question of finding an adequate way of getting those vitamins, minerals and electrolytes into the blood stream... Oh, by the way, the ultrasound showed that my diet for removing gallstones and inflamation of the gallbladder 7 years ago actually worked. What once was an inflamed gallbladder with a ton of small stones and a few large ones now is an normal gallbladder with 3 normal-sized stones. I guess I didn't or don't need to have that organ removed, do I? And I guess a word spoken by a doctor isn't a word from the mouth of God... I guess if I cause myself a heart attack, stroke or kidney disease by removing myself from BP medication and continuing with my investigation into healthier and healing diets it's better than allowing one of these "gods" kill me due to their laziness or, possibly better phrased, "Their Recklessness"... The "American" phrase I find myself using most frequently here in Mexico is, "If you want it done correctly, do it yourself". Now, Ross would be a foolish boy if he lets one of these guys kill him, wouldn't he...?

Ross

Kathy, I imagine I confused Crohns with Colitis... But I was under the impression that the J-Pouch groups are full of people with Crohns...

As for Immodium or slowing things down or decreasing the bowel movements... Ever since I had my colectomy at that age of 13, which was 30 years ago in February (I turn 44 in June), I've registered much more frequent bowel movements than my doctors thought normal. When ever given the response, my doctors raise their eyebrows. And now with the J-Pouch surgery 11 years ago, it's a totally different situation; I don't even remember how good I had it with a rectum and without a J-Pouch. Supposedly normal # of bowel movements a day for a J-Poucher is 5 and one in the middle of the night. Well, If I go to the bathroom less than 10-15 xs per day, it's a shock. However, whenever something caused the thickening of my stools, such as potatoes (I call it cement), I end up going to the bathroom more frequently because it does leave the pouch sufficiently, causing the sensation that I relieve myself sufficiently. I surprised the GI the other day when I said, "Truthfully, I don't want semi-solid stools; they cause me a hell of a problem. I'd prefer having constant semi-diarhea. At the very least I know when the pouch has vacated sufficiently and that I can relax." Last night I found myself in the bathroom from 2am until almost 6am. If I am working for someone when I have this problem, will they understand why I run to the bathroom so frequently or spend so much time there or why I come to work exhausted from not sleep the night before? NO. Last night, I drank at least 3 large glass of water, a Yakult and fresh squeezed grapefruit juice. It dawned on me that my body treats fresh fruit juice as solid matter and doesn't send that liquid to my kidneys... So, I figured it would automatically de-block my J-Pouch. At the same time I was reading that my BP medication is a diuretic, explaining why the 3 large glasses of water came out as urine a few minutes later and that they wouldn't reach the J-Pouch. So, I slept 3 hours last night and have found that the fecal difficulty is slightly decreased. However, now I have pain in my lower back or lower abdomin, which I imagine is from the stress placed upon my J-Pouch and all of the pushing to no avail... After explaining to my wife what I learned last night, I prepared myself a large glass of lemon water and I blended chickpeas with lemon, garlic and olive oil. This is the first time I've made hummous without tahini. And let me tell you; IT'S SO MUCH BETTER WITHOUT THE SESAMES... It's less bitter, more silkier. Don't get me wrong, sesame is very important for your health. However, it is difficult to blend or grind sufficiently and commercial tahini is very expensive. Here in Mexico? I'd be lucky to find it, it would be twice as expensive as in New York City and the quality would be horribly questionable. I did I tell you that my #1 art form and my lifelong passion is international cuisine? Did you know that what is known as French Cuisine today was Gourmet Italian cuisine 600 years ago? One of the daughters of the Medici family married a French prince and took her kitchen and chefs with her when she moved from the land of Michael Angelo to France. French cuisine was horrendous when she first set foot there... Now it is the best of Italian cuisine of the 15th century.

Ross

Sharon, thanks for sharing your experience with us. I usually don't ask personal questions since most people don't appreciate prying, making me seem uninterested. Most questions asked through email, internet groups or Facebook go unanswered. I hope you've been given some time to rest from the illnesses. I can't imagine how you felt. I had my J-Pouch surgery when I was 32-years-old, just after 9/11. The surgery left me without the ability to procreate (to aid in that process), although it didn't leave me impotent (thank God...?) However, at the time I was dating women who were "watching the clock"... Well, that was the age group. What a pressure to not be able to buy "THAT GUY MR. RIGHT" since my not being able to impregnate "her", removes half of the in-love fantasy. The other day my wife Margarita asked me or suggested what may have happened in New York City if I was left impotent; she believes I would have committed suicide. Don't misinterpret that as her disrespect towards me, because that wasn't her tone. But, I raise my eyebrows anyway. I don't know how it would be. The J-Pouch also created an incontenance problem at night. I can't imagine sharing that with most of the women I knew in New York City, or with anyone. Margarita and I are married 9.5 years. She was the first daughter and the 3rd child of 13, born between 8 brothers... Fortunately for me, she had it up to her neck helping raise her mother's children... Not long after we began our relationship in the mountains of Veracruz 1.3 years after having my last surgery, I told Margarita that I couldn't create children. Her response was, "how do you know I can?" and that was that... I can't imagine how you coped within that situation of cancer of the vagina... but having to endure Colitis or IBD from the age of 9 to 18... It's a hell of a lot. But now, I guess, that's long passed... And, in the end, I imagine you don't see it as such a negative life experience. My perspective is very unpopular; I always turn things on their head regarding learning, life experience and destiny...I imagine you are a very strong person and that much more intelligent and sophistocated through your difficult experience (and so many years of it)... It's difficult not appearing trite with my translation of my feelings, reactions or thoughts. However, if I protect myself from a misunderstanding by not expressing anything thought or felt, I will seem insensitive and cold... So, I prefer risking a misunderstanding with my communication style instead of responding with the typical "American" or Mexican protective silence. Silence also creates misunderstandings.

Ross

Thanks so much FRH,
My dad was a very complex man...he was orphaned at 13 and found himself in a concentration camp 6 months later...not exactly a nurturing environment if there ever was one...only those that hid their emotions and mastered their tears survived that experience...but survival does not mean that you forget it...he grew up but didn't grow out of it...he lived in mortal fear that something like that would happen once again and he was terrified for his sick daughter...only the strong survived in his world and he wanted me to be strong...a survivor.
This disease does a lot more damage to those around us than we realise. His initial trauma was nothing compared to the trauma that he felt at having a sick and fragile daughter...that was his akward way of trying to make me strong...years later he used the expression, 'get used to it' when it came to surgery or the pain and humiliation that went with it all...he wanted me able to handle whatever God and nature had to throw at me (I think that he succeeded)...To this day he is a kind and loving man (hemiplegic stroke survivor for over 20yrs)...and his principal worry is me and my health...
Sorry to go off topic here...but our loved ones don't always understand what they are doing to us when they do it...it took me many years to understand and forgive...now I am grateful. Hugs might have felt nice but they wouldn't have helped in the long run.
Sharon

Forgive me if I repeat myself or if I haven't responded to your comment... The past few days I've been "embroiled" in a frenetic search for information and solutions to my Vitamin D deficiency. You may say, "just go out into the sun..." or "take some suppliments" or "drink a glass of milk"... Or "you live in Mexico, you shouldn't have a Vitamin D deficiency..." Or it's probable you wonder what's the big deal... Yeah, what's the big deal? I imagine most doctors don't understand that there's a big deal, especially here in Mexico where it seems there is a "conspiracy" against allowing adequate Vitamin D suppliments onto the market. "Now, why would they do that?" you may ask. If I succeed in writing this adequately, you should understand why it's in the doctor's (especially the cardiologists) and the pharmaceutical industry's best interest to keep the suppliment off the market. When you think about healthy bones and children and issues of calcium deficiency connected with Menopause and Osteoporosis, I imagine you only think of Calcium. Ok, if you are a middle-aged woman in the U.S./Canada and Northern and Western Europe, I imagine this will not come as news for you... Who knows? Your body cannot absorb Calcium without Vitamin D. So, if you have a vitamin D deficiency, you should have a Calcium deficiency. When you have a calcium deficiency, your body removes calcium from your bones in order to meet muscle and nerve cell requirements (among others), leading to osteoporosis, fragile and malformed bones. Have you heard of cradle cap in newborn or recently born babies? My wife is from a very poor farm community in the mountains of Veracruz where all babies are breast fed for at least a few years. When I mentioned this... to her, she replied that all the babies have cradle cap and that it's because the mothers are afraid to wash their scalps due to the softness of the front of their skulls and that cradle cap is just dirtiness that she always scrubbed off her brothers... Now, here's the news for you recent mothers, aunts and grandmothers in the recent push for breast-feeding in public etc... (forgive the poor writing, since it's really just a movement for helping women [and men] become comfortable with breast feeding etc...) Although breast feeding helps babies with the development of their immune system because they receive the anti-bodies of their mother, without giving the babies formulas and/or fortified milk, the babies will automatically have a vitamin D deficiency that leads to cradle cap... Well, I don't have cradle cap;-)

Vitamin D regulates blood pressure. Vitamin D deficiencies cause hypertension and can lead to heart disease and kidney malfunction.

As I imagine you remember, I went to a GI about 3 weeks ago. I was experiencing abdominal discomfort I thought was connected with my gall stones and also a new discomfort in the region of my left kidney. The GI didn't want to do an Upper Endoscopy, said that all J-Pouchers are B12 deficient, prescribed a Vitamin B12 injection and said that I was hypertensive that he believes could be found in the region of the kidney. He connected me with a cardiologist who put me on BP medication... The day after injecting myself with B12 I experienced horrible fatigue in my calves and then in me calves and feet and then also in my thighs first at mid run (about 1.2 miles) and then at the beginnings of the runs... The reason I went to the GI in the first place was because Gardner's Syndrome can affect the small intestine. How? Truthfully it is very difficult to find information about Gardner's Syndrome because we are such a small test group... However, my last upper endoscopy showed inflamation of my duodenum (duodenitis) explaining a slight iron malabsorption problem... So, I figured the problem could have increased. Until this GI informed me of the J-Pouch causing malabsorption problems since the Ileum supposedly ceases absorbing the B vitamins, I never thought much of malabsorption... The sudden and drastic muscle fatigue along with the new information sent me into a scramble for information about the J-Pouch, Ileum and other deficiencies (and is what ultimately caused my joining (again) the J-Pouch community... What could be causing this fatigue? How horrible for me, trying to lose weight and truly become healthy approaching middle age (I've always put my health way behind 2nd...) The GI's contempt for "educating" oneself through the internet was very clear when he scoffed at my "research" on the internet (although that's how I "healed" myself 7 years ago and how I removed the gall bladder problem without removing the gall bladder) and said, "95% of what you read on the internet is garbage, and said that he is sure that part of my high blood pressure is from all the misinformation I find on the internet and the obsession with seeking..."

Ok, I know this is getting very long. "American" short attention span ADHD theater...

Against my doctors' silence, I went to a local laboratory and asked for blood tests that test for malabsorption problems. In my reading I realized that the muscle problem could be an issue of biotin or a potassium deficiency. I had just read that the beginning of Vitamin B12 supplementation can cause a sudden potassium deficiency due to the production of new red blood cells. I had also spent lots of time trying to find out where Biotin and Potassium are absorbed (and produced)... Potassium deficiency also causes the rise of blood pressure and risks of heart attack.

Do you notice that I haven't mentioned Vitamin D deficiency and muscle pain? Well, I hadn't seen that on the internet until just before I received the results. When I asked for the blood test appointment, I didn't ask for a Vitamin D exam. Somehow the attendent slipped that test in (which created a $100 dollar increase in cost). Truthfully, I didn't know what I needed there and entered the laboratory very confused, hoping they would know what to test for. I said, all the vitamin Bs, Iron and Potassium. They only tested for B12, Iron, Potassium and Vitamin D. My B12 was over the roof, my iron was acceptable, but low and my potassium was normal... However, my vitamin D was "insufficient"... When you look up Vitamin D deficiency and muscle pain while running, you find a ton of articles on Runners World and other professional exercise magazines explaining that what is considered an "insufficiency" is actually a "deficiency" that could lead to some very grave problems. Further reading shows that the RDA created by one of the "American" medical associations (that informs all the doctors of the world- the scales and the recommendations are used here in Mexico...) is way off, and if you have an insufficiency you are a decent amount of time at risk of stress fractures, heart attacks, breast, colon, prostate and stomach cancers, Alzheimer's Disease, depression, chronic fatigue and a whole number of auto-immune diseases...

Imagine, you were just put on BP medication and your (my) cardiologist just told you, "you will be on this medication all your life"... but no one tests your Vitamin D levels... Fine, the medication lowers your blood pressure artificially. However, your D deficiency combined with/causing a calcium deficiency and a phosphorus deficiency causes nerve damage, memory impairment, fatigue (which you probably think is what causes you to be mentally lax; and for how many years?). Drink your vitamin C, eat your vegetables and your fruits, drink your electrolyte drinks and your coffee... (And don't let ANYONE tell you that "coffee is high in Anti-Oxidents; my father-in-law is a coffee farmer; originally and organic coffee farmer; my business is a travelling coffee bar. LISTEN TO ME CLEARLY: The coffee bean which we roast in order to use it in coffee, does NOT have anti-oxidents. What has the anti-Oxidents is the pulp surrounding the bean. The bean is removed from that wonderful pulp and the pulp is disposed of. If you want to sell anti-oxidents to producers of anti-oxident drinks, you would buy the ripe coffee "cherries", discard the bean and chemically extract the anti-oxidents from the coffee bean flesh and sell it a nice price. But you will not find those anti-oxidents in brewed coffee -- SORRY NESTLE/Nescafe!)

Vitamin D deficiencies cause muscle fatigue and muscle spasms. Muscle fatigue leads to stress fractures, since the Skeletal muscle doesn't have the strength for protecting the bones from the constant pounding caused by running or other types of resistence training. A world class runner from California was beginning a marathon (5 miles into it), when a bone in her foot snapped. At first they (the doctors) didn't know what could be the issue. It turns out that she uses a lot of sunscreen due to skin cancer she has suffered. However, she has a good diet, is well trained, well informed. However, there are very few foods we injest that have sufficient levels of vitamin D... You must eat 2 servings of Salmon or Halibut or Tuna per day in order to maintain your Vitamin D levels. You would have to drink a lot of milk and eat a lot of cheese in order to maintain your daily levels. Plus, the RDA recommendation is very low (400-600 NDs) when it is advised that you injest 5,000 NDs per day... The RDA says that normal D levels are 20-50. Insufficient is 10-20. Deficiency is 0-10. However, when you are found with an insufficiency, your specialist (in the U.S.) suggest your taking as much as 10,000 NDs per day until your # reaches 55... It is suggested that healthy levels are between 50 and 70 and that 20-50 puts you at risk of 18 types of cancers, auto-immune disease and other issues. The runner who "broke her foot" had my level 18. The experts say that below 20 is an emergency situation. And, I'm "the only one" here in Guadalajara who believes this is an emergency situation. It is almost impossible to find Vitamin D supplements here. And those suppliments are 400 IUs... The only store here that sells Vitamin D is GNC (General Nutrition Centers). They sell D2 (which has all but been removed from the U.S. market) 400 IUs. here. In the U.S. they offer up to 15 different D options, all being D3, which is what is produced in our skin and all above 2,000 IUs up to 5,000 IUs...). Costco in the U.S. offers D suppliments of 1,000 and 2,000 IUs. Costco Mexico offers suppliments between 200 and 400 IUs... Now, if I need to take between 5,000 and 10,000 IUs per day for 6 weeks, how would I do that with 400IU capsules, that cost more than the 5,000IU capsules sold in the U.S.? Imagine that! And if I go to a specialist here? Even if they understood this, there is no way of obtaining the suppliments.

I've rambled on a ton and I'm sure I haven't offered you adequate information. However, I suggest you look up on Google, Vitamin D deficiency, cancer, muscle fatigue, Runners World, etc and you will find all the information you need.

I truthfully believe that we could remove a big hypertension issue placing a fraction of the HP cost into vitamin D supplimentation and possible regular stints in the sun (if you can do that dressed in just short shorts and a bikini top if you are a woman). However, if you are categorize as being at the very beginning of obesity (#30 on the scale), sunbathing will not help. Granted, if you are stocky (big boned or big muscled) it is probable that your doctor has not calculated your true # since, the height weight equation does not account for those with bigger bones or more extreme muscle mass. Ever since I was a child in elementary school I was told that, for my height, I was 5 pounds over weight. I will attach some photographs of myself from that period and you tell me if I was overweight. I am waiting for an Omron body mass scale, so I can know what is my true overweight-obesity. I have much bigger bones and a hell of a lot of "unintentional" muscle; I am not a body builder, but I have super muscular legs, ass and arms/shoulders. I've been told many times that I should compete as a body builder, since a little bit of training and my body explodes. However, truthfully, I don't want to look like a gorrilla... My fat quotient today is 30. I am qualified as Obese. However, I was running 4 kilometers (28-31 minutes) 4-5 times a week since August. In August I was running up to 45 minutes in a flat park 4 times per week. At any given day I can do 30 pushups, twice... I've always joked that, "I could become annorexic and they would still say I MUST lose weight if I don't wan't to risk heart attack...!" I wasn't able to attach a photograph due to size problems...

Interesting posts by all! During my hospital stay last week was the first time the malabsorption issue was really raised for me. Once I was rehydrated and eating again my potassium levels started to drop below normal. I had no vomiting or diarrhea. I've just recently learned how dangerous low potassium can be! I'm 15 years with my J pouch but this last year has been the worst for extremely low levels of potassium, sodium and magnesium at times. I've never been a high energy person but 2012 was very hard for me to get much more done than go to work!

It would have been nice to have been told by doctors how not having a colon affected your nutrition and health, other than to remind you about being susceptible to dehydration! It looks like I will need to have blood work done every 6 weeks or so just to see where my levels are.

Has anyone tried infusion therapy for these electrolytes/vitamins/minerals?

TXgal58,

It's very strange that you would start having low potassium after being rehydrated.

Ross

FRH,

Very interesting what you say about the lights. I must look into that!

Ross

Vitamin E is very important for absorption. If you have low Vitamin E, you will develop absorption problems in the small intestine. Recent surgeries, recent injections of B12 or supplimentation of B12 or anything that causes a sudden increase in red blood cells can cause low potassium levels... Read this about Vitamin E: http://www.whfoods.com/genpage...me=nutrient&dbid=111

* A very important note: While spinach is one of the most vitamin packed foods on the planet, it's Oxalate Acids cause the blocking of a good percentage of its (and other food's) wonderful vitamins and minerals. So, you must blanch the spinach in a large pot of boiling water exactly 1 minute to rid the spinach of the oxalates. The water must be disguarded. Oxalates also create gallstones and kidney stones... J-Pouchers have a tendency towards gallstones...

We've got a ton of work instore for us. However, I believe we can find the combinations that put us ahead of the game some time tomorrow. Remember: each person experiences their illness and their surgeries differently than the other, even in the same family. So, what works for one person may not work for another. That said, the doctors can't know what your experience will be because it is different for each "case". We must find patience, perseverance and respect for ourselves. You must try as hard as possible to appreciate your self and be caring. Although others may have "worse" diseases, no one experiences what you experience, meaning you must love yourself. Love is a very open and ambiguous concept full of socio-psychological traps. It may be just easier to understand the idea of giving yourself more respect, consideration and patient caring. Somehow, that falls within my concept of love.


Ross

RGH, yes indeed, very strange. When I asked about why it was going down, the hospital Dr. said I may just have trouble with absorption of things like potassium.

I do have gallstones; one of which is currently lodged in my common bile duct. Gall bladder surgery and ERCP to remove lodged gall stone are in my near future!

Txgal58,

I'm sorry to hear that! and yes, you have no other choice with that lodged gallstone. If you aren't a vegetarian, the obstruction of the bile duct will make it virtually impossible for you to digest meat.

I believe you can inject potassium. Potassium deficiency leads to muscle fatigue and high blood pressure/heart attacks. So, I hope you resolve that problem quickly. In the meantime, think about eating potatoes in any form including potato chips. Supposedly they are higher in potassium than bananas...

Ross

Thanks again RJG! I don't eat large amounts of meat fortunately and love potatoes! I really need to find a way to get it naturally because the potassium "horse pills", prescription by the way, are killing my stomach. With food, after meals, dissolved in a small amount of water, just horrible. Also tore my IV site up in the hospital. Those potassium levels are nothing to mess around with I know now. The hospital doctor said she didn't know how I was functioning with it at 2.7 when I was admitted. I told her, not very well!

Great information about vitamin E!

Texas Gal, I'm glad you found the information useful. George Matjecin's site is incredible. If you haven't done it yet, go back into the www.whfoods.com site and look up Potassium under the heading "Essential Nutrients". I'm sure that will be helpful. I've noticed that a lot of health service/nutrition websites cite WHFoods, such as Livestrong, which I find is very informatve too... I wish you much luck.

Ross

RJG,

I completed my first half marathon in December with a Vitamin D level of less than 4. It was amazingly painful. I beat my personal record but my times were much lower than what I was doing before losing my colon, six other organs and having a j-pouch.

After 1 month of taking 5000 IU gel caps daily my level is 18.3. I am now taking 7000 IU a day. You can develop toxic Vitamin D3 levels so for others reading your posts they should not take high levels of Vitamin D3 without having tests taken first to determine how much of a supplement should be ingested. I also take Trace Minerals liquid vitamins and minerals supplement. The liquid supplement increased my daily strength level more than anything else.

If this doesn't work, I will start twice weekly Vitamin D3 through an iv. The dosage will be between 35,000 and 50,000 IUs each time. The reason my doctor is being so pushy about it is that people with j-pouches and low levels of Vitamin D3 have a higher probability of having bacterial overgrowth and pouchitis problems than any other patients with j-pouches. Our goal is to increase my levels to 50.

I am already being treated for pouchitis with 1600 mg of Xifaxin daily for 14 days and take VSL#3 DS twice a day.

I fight the running fatigue and pain by stretching twice during a run. I start with a slow pace for 5 minutes and stop and do a full dynamic beginning run stretch. These are slow flexibility based stretches. They are excellent for people who were on steroids for 20 years like myself.

At the end of your target distance stop and slow down to your starting pace for five minutes. Finish off with your normal post run stretches. Until the Vitamin D3 deficiency I had no problem completing 14 miles. My goal was to build up to a full marathon of 23.2 miles. Now I can only handle two miles but I am hoping the infusions will change that in time for me to train for a marathon in June.

For those of us without a colon the right stretches are priceless. The classic book of stretching is "Stretching" by Bob Anderson. It has sport specific stretches. I think the 30th anniversary edition just came out. Runners World also has many good articles and videos on stretching.

I trained with an international champion race walker who had her colon removed and won a marathon three months later. She taught me how important stretching is to your overall health when living with a j-pouch. Some of the abdominal stretches she taught me really helped with an adhesion in my lower left abdomen. I wish she had them posted somewhere on the internet. She is an amazing athlete and coach.

The other cheap and simple item that helps lactic acid build-up is a foam roller. Here is Runner's World's video link on what it is and how to use it: http://www.runnersworld.com/st...-roller-video-series.

When you are really sore it will hurt a bit at first. The more often you use it (at least daily), the more your lactic acid threshold will increase. I use the 18" medium density roller by j/fit. They donated one to each member of our Crohn's and Colitis Foundation of America (CCFA) Team.

Locally, in Portland, Oregon, they cost about $18. They are sold at Walmart as well as Amazon and just about any running store.

Make sure your shoes are at least 1 size larger than your regular shoes. Being able to spread out your toes more decreases muscle fatigue and improves your running form dramatically.

I agree with your posts on nutrition. Knowing what and when to eat helped my son and I quite a bit. He has ulcerative colitis too. Keeping a food journal helped us figure out what foods triggered blockages and diarrhea. We are now working with a nutritionist to learn recipes that we like and are easy to cook. So far Thai and Vietnamese recipes have been our favorites.

Subzero,
What liquid mineral suppliments do you use? I am searching for something and can't seem to find any complete or good ones....
Thanks
ps...you amaze me, you are absolutely incredible!
Sharon

I, too, am very interested to know about recommended liquid mineral suppliments. As soon as I figure out what deficiencies I have going on (test results tomorrow, hopefully), I hope to put together a good regimine.

Many people here swear by Forvia vitamins, because they are designed for people prone to malabsorption. There also is a chewable form, if you need a more rapid release. They are not liquid though. I am not clear why liquid would be necessary.

http://www.inovera.com/forvia/

Jan

I agree with Jan. I take regular Forvia vitamins - not the chewable - and they absorb pretty instantly. And as far as I know, they're the only vitamin specifically made for malabsorption.

kathy

For me I think liquid would be best as I often see pills pass partially undigested. What types of tests are there for malabsorption?

Txgal - Forvia is specifically made to dissolve very quickly. You can test to see how fast your medication is dissolving.

Here's some information regarding testing for malabsorption.

And here's Forvia's information page which provides quite a bit of information about the absorption of vitamins which could be used for whatever vitimin you might be considering.

kathy

Sharon, The brand name is Trace Minerals. I use the one without iron. At my age, iron is not recommended unless you have a specific deficiency. (Thank you for the compliment. It is weird to be almost 40 years older than the rest of my team.)

Jan, I use a liquid because I did not know about Forvia. Regular vitamins were just passing through me undigested. I tried a couple of different liquids but Trace Minerals made me feel the strongest.

I totally hear what you are saying, Jan, about the Forvia and I will be trying it out.

The liquid minerals still intrigue me, though. I dehydrate terribly; I read the product information and it discusses replenishment of electrolytes. That right there is very compelling to me as I do not like to consume volumes of Gatorade (too much corn syrup).