RJG,
You don't say how long you have had your J pouch...I know that you have had a collectomy for 30yrs but the pouch was created when? If you have had the pouch for 30 yrs too then the sudden changes should not be due to the mal-absorbtion (cramping when running etc) nor should the hair thinning and greying...if on the other hand you have just had your pouch done then there may be a connection...Have you suddenly changed your diet? Are you eating more or less of something than usual?
Yes, we need to watch our potassium levels and our hydration in general...you need to keep very hydrated as compared to a coloned person and not just water...homemade lemonaide with mint is good especially sweetened with a tsp of honey and so are certain fruit juices (I like cranberry, pomegranite, mandarine...) diluted with 50% water so that I get what I need without too much sugar...
You can also juice vegetables like carrots and celery or just about anything that you like to make yourself some very healthy mixes.
According to my surgeon the small intestine slowly takes over a lot of functions from the colon over time and adapts to its new role...To what extent I do not know but mine seems to do a reasonably good job with it after 33yrs.
Sharon

Most of us still have our terminal ileum. If you don't have yours I would be surprised if it took 30 years to see smpoms of B12 deficiency. But the best way to find out is with a CBC specifically requesting B12 levels.

Sue

Hi Sharon, I've had my J-Pouch 11 years...

Ross

Hi Sue. The J-Pouch is constructed with the Ileum rendering it disfunctional for absorption of B12. However, last night I read that all B vitamins are absorbed in the Ileum. However, if you put Vitamin B absorption and the Ileum in a Google search, all that comes up is B12, as if B12 deficiency is considered the only risk in not absorbing B vitamins...

Ross

RJG,
Why would the B12 absorption stop once the pouch is created? If anything I would have thought the contrary due to the fact that fecal matter stays in the pouch longer than it would in the terminal ileum which is just a waystation to the colon?
Sharon
ps...keep keeping us informed on your research...it is very interesting

Hi Sharon, I wish there were more scientific information available and written for the layperson so that we can best understand how our "new" bodies function and what lays ahead for us regarding our digestive tract etc. The only reason I knew about B12 absorption problems was through my new GastroEnterologist here in Guadalajara, who was the president of the Association of GastroEnterologists of Mexico and who has met my surgeon (and leader in the field) from New York City. He informed me that when the Ileum is reconstructed as the J-Pouch it ceases functioning as part of the Small Intestine, but as a reservoir, as had functioned the rectum. I believe the J-Pouch is just there to give you resting time between the bowel movements. However, over the past few days of concern regarding other problems I'm experiencing, I've stumbled across other possible physiological problems possibly connected with not having a functioning Ileum and the non-existence of a Colon... Those possible problems can be connected with no excorption (I lose my English spelling here in Mexico) or production of various other necessary vitamins, minerals, amino acids/enzymes or electrolytes... Such as Vitamin K, Biotin, Vitamin H, Potassium and ALL the other B vitamins... I just want to know where these vitamins etc are absorbed and/or produced in the body. My wife had sworn by taking B Vitamin Complex for energy when we are working with our coffee bar and didn't understand why I didn't take the vitamins seriously. And, now I learn from the Gastroenterologist, no matter how much Vitamin B I injest, I will not experience the positive effects because my Ileum ceased to absorb B with the construction of the J-Pouch. If I'm correct you (we) have between 7 and 12 years of living healthfully after the last time our bodies last absorbed Vitamin B12, before the deficiency symptoms appear. Well, I'm possibly 4 years into the beginnings of the deficiency, being that I had my rectum removed and replaced by the J-Pouch 11 years ago.

It's a shame that there isn't anyone that connects the field of Nutrition with the field of Short Bowel Syndrome/J-Pouch/Colectomy... The thing is that with only a Colectomy, the person will experience a "malnutrition" people with Colons won't experience, due to the lack of the bacteria/flora that produces Vitamin K (if I am correct) and that breaks down fiber and proteins in the colon and that produces electrolytes absorbed by the colon. However, without the Ileum, the person enteres into much greater long-term risk. For some odd reason, J-Pouchers do not qualify for people who experience Small Bowel Syndrome, since the requisites for that issue is the dysfunction or removal of at least 50% of the small intestine. I believe the removal of the Ileum is around 25% of small intestine loss...

A woman (also from Wales) commented in a Gardners Syndrome group on Facebook that she was annoyed that the organizer of the group refers to Gardners Syndrome as a terminal disease. However, the woman who created the group had just lost her husband to Gardners Syndrome, as my mother had lost my father when I was 4-years-old, as my father had lost his mother when he was a young boy... Terminal is when no one knew that you carried the gene and that you had polyps in your rectum and colon until after you are diagnosed with colon cancer... At that point you will die in less that a year because the cancer will have metastecized to a vital organ... However, for those fortunate to have been diagnosed because one of their parents died of the disease, the syndrome ceases being terminal (if the person has money for the preventative surgeries)... The however is very important because I believe terminal diseases, especially those that appear during childhood and adolescence are "friendlier" or more just than a non-terminal syndrome that reminds us of our mortality every few years, every time that something new appears... With FAP/Gardners Syndrome, much like Scientific Theories, we learn that what we thought was true and the limit and the remedy yesterday may not be true today... The problem with undetected Gardners Syndrome/FAP is that the average person becomes ill and dies somewhere in their late 20s early 30s..., creating the great possibility of leaving behind a spouse and children. The legacy for their children is that they will have an incredibly high possibility of living with the syndrome too... Now, if the FAP matured 10 years earlier, maybe we all would be spared the complicated futures; not just complicated for the patient but for their spouses... I wish I could be spending my days painting and reading and focussing on spiritual questions and discoveries (not to be confused with modern religious movements/organizations). But I find myself concerned about these issues because I have a wife and a business to run/develop.

I appreciate your attentiveness. I don't have that energy for attending the concerns of others...

Ross

Ross,
My colorectal surgeon told me that inspite of the reconstruction of the pouch out of the terminal ileum we should still be able to absorb some of the B vitamins...I was originally tested at the Princess Margret Hospital in Toronto for absorbtion issues after my pouch was created in 1979...they were doing studies in those days to test the long term effects of k pouches on digestions...the results showed that althought slightly diminished they were not totally gone...I have my bloodwork done regularly (1xs/yr) and other than anemea (I'm a girl and it is considered normal) and a vit D defficiency most of the other numbers are normal...I do take a lot of suppliments...including Vit B Complex, chrome (for the pancreas), a chewable multi, Cal/Mag/Zinc and Collagene for my joints and connective tissue (a congenital difficiency not related to my pouch)...I do rotate certain vitamins according to the season and my fruit and vegetable consumtion.
You can check out certain University Medical centers that do indepth studies into the subject...I don't know which ones are doing that sort of thing now but it was very popular in the 70's and 80's.
Hope that you find the answers that you are looking for...
Sharon

Sharon, what is the difference between a K-Pouch and a J-Pouch?

Ross

Remember that a J Pouch doesn't protect you from other maladies. As others have said, brand new absorption or nutritional problems don't seem very likely after so long. Perhaps you have a non-GI illness. I'd suggest visiting an internist for help.

I've had my jpouch for 12 years, get my B12 levels checked annually and do not have a deficiency, but I was deficient prior to surgery.

Sue

Ross,
There is no functional difference between the pouches themselves...they are absolutely identical...it is the exit strategy that is the difference...the J pouch as you know uses the natural exit to evacuate stool and gas...the K pouch uses a continent one-way valve (built out of your own ileum by your very skilled surgeon) placed on the abdominal wall with a stoma exit at the level of you ileum...we then use a catheter to evacuate the stool and gas which remains liquidy (hopefully!) and pours out of the pouch through the cath...
Sharon

I've had my jpouch 20 years, and my B12 levels are actually elevated.

Sharon, I appreciate the comment "evacuate the stool and gas that remains liquidy (hopefully!). When I met with the Gastroenterologist last week, he asked me how frequently I go to the bathroom and if my stools are semi-solid... When I told him that they were very liquidy (thank god), he was surprised... "They" believe that returning the patient to almost normal bowel movements is a validation of surgery or verification that the patients return to a semi-normal lifestyle... I explained to him that, when the stool is thicker, I have much more discomfort and difficulties... Before a person has their colon removed, their life/lifestyle has changed dramatically and they must accept that they are different. There is not magic pill for removing FAP, IBD, Crohns, etc... When I had my colon removed in 1983 at the age of 13, my surgeon (who was a truly wonderful man, as far as Proctologists or Gastroenterologist go) at Sloan Kettering Cancer Center in New York, told us that with the removal of the colon comes the removal of the issue. However, what changed was that the investigators gradually realized that the syndrome was much bigger than their knowledge base... At that time my mother was pretty optimistic with the idea of being able to isolate genes and remove them from humans in the future. She would say, "Don't worry about your future children Ross. By that time, not only will they be able to detect FAP/Gardner's Syndrome in new borns, without having to subject them to sigmoidoscopies, but they will also be able to alter or remove the genes..." Nice fantasy. As far as I know, 30 years later that has not come into play. Well, I've never created offspring... And it is almost too late for that to be an issue. We are born onto our spiritual lifeline and this is where it brings us... I sent an email to my Gastroenterologist yesterday mentioning that I wanted to have certain tests taken, along with a sonogram of my abdomin. He hasn't responded. I guess he didn't appreciate my suggesting exams that he hadn't suggested... All of this researching as a response to a clear concern due to clear discomforts is burning me out. Too bad the Gastroenterologists don't suffer the complex ailments of their patients... Maybe that way they would truly understand the real issue. It took me 7 years to seek out another Gastroenterologist... The only reason I sought him out was because of the sudden "birth" of a new concern. Although it may not be proactive, I was much more relaxed believing that I had everything under control with my self-constructed and managed diet. Infact, I was incredibly proud of myself for having become interested in fruits and vegetables and how we benefit from being conscientious about what we put in our bodies...

Thanks again.

Ross

I had visited with the Gastroenterologist due to a constant discomfort behind where I imagine is my stomach; behind my lower left ribs in my back... and with what I figured was inflamation of my gallbladder since I have gallstones and had eaten much dairy over the prior few months. 7 years ago I was diagnosed with two ulcers in my stomach and figured that the new discomfort was from the ulcers, although the only thing I encountered for pain in that region is related to some form of kidney problem... It had been 7 years since my last Upper Endoscopy, so I figured an upper endoscopy was overdue... However, the gastroenterologist told me that the UE was unnecessary, as was unnecessary an Ultrasound. And that the only thing necessary was a visit with a cardiologist, due to high blood pressure, a hypertension he believes is related to my kidney and injection of B12, since he believes that it is overdue, since J-Pouches remove the possibility of absorbing vitamin B12... Today my left arm and left leg are numb, as if the muscles are fatigued...and I feel a slight nausea or something that, for the first time in a long time, removes the enthusiasm for eating. And last night I prepared my favorite Thai Curry; a flavor I'm in-love with... It's possible that the blood pressure medication is kicking in... However, I must wait until just after new years for taking the blood tests related to the blood pressure medication... Truthfully, I'd rather be doing something other than this... I was very happy with my exercise routine combined with my diet and the new crazy painting... Throw in a few hours of cooking and another few hours of reading during the weeks before we go back to work... and life is nice. However, the arisal of a new gastroenterological issue creates mental and potentially economic chaos...

I think the confusion here is there is an assumption that the colectomy and/or j-pouch automatically create nutritional deficiencies, when the reality is that it might. According to this journal article, B-12 deficiency is common in j-pouch patients, affecting about a third. That means that two thirds, or the majority are not affected. It is mostly associated with pouchitis and Crohn's disease, where there is chronic inflammation, not just the existence of the j-pouch. Without the inflammation, nutrient absorption is not affected.
http://www.ncbi.nlm.nih.gov/pubmed/19404082

It is easy to know if you are deficient, since it is an easy blood test. If all b12 absorption stopped, it would take about 3-5 years for the liver stores to be depleted.
http://www.merckmanuals.com/pr...ity/vitamin_b12.html

Also, B12 absorption is more complex than just the terminal ileum. Most often, it is a problem with lack of stomach acid, not a problem with the ileum. If you take medications that interfere with stomach acid production, you increase your risk of B12 deficiency. As far as I know, it is only B12 that is dependent on the terminal ileum for absorption, not all B vitamins. The fact that you had prior ulcer issues might be a bigger factor for you.

Here is a link to a very good article about the potential nutritional issues with j-pouch surgery. I say potential, because they are not a given with every pouch, but just possible and something to be aware of. Hope it is useful for you.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3424428/

The point is that we are each individuals with individual adaptations to our new anatomy. There is no one-size-fits-all solution.

Jan

P.S. I am concerned about your GI's dismissal of your request for a follow up upper endoscopy, since it has been 7 years. FAP is not my area of most knowledge, but I thought that regular endoscopic monitoring was paramount in keeping ahead of potential cancerous lesions?

Thanks Jan. I really appreciate your concise response. At the moment I am on my way to a clinic for making an appointment for certain tests. I will read those articles when I return. You have a point about ever person's experience is different. We have my father's experience and his older brother who didn't develop cancer as did mine, although he was diagnosed with FAP and had his colon and rectum removed, and my sister, two cousins and I... FAP/Gardner's Syndrome is much different for all of us. And, yes, it's very strange that the Gastroenterologist didn't want to perform an upper endoscopy saying that, since I had one 7 years ago, I didn't need another one. However, the FAP/Gardner's syndrome specialists suggest upper endoscopies every 2 years if I'm correct. 7 years ago the Gastro Enterologist noticed that my Duodenum was inflamed, although he didn't notice anything abnormal. He said that I may have low iron levels due to the inflamation...That same Gastro Enterologist also diagnosed me with 2 small ulcers in the stomach and suggested removal of my Gallbladder because it was inflamed with gallstones... At the time I didn't have the money for the surgery and decided to be vigilant about what I injest... I mentioned that to the new Gastro Enterologist who, supposedly is at the top of the field here in Mexico. But, he's the one who negated all need for further observation into my abdomine...

thanks again :-)

Is your new GI at the top of the FAP/Gardner's field in Mexico or just in the GI field in general? I ask, because the FAP/Gardner's field is a subspecialty that I think you need a GI with special expertise in the field of FAP. I certainly would not try to tell you how to live your life, but not getting the appropriate monitoring could be risky for you. Obviously, it all depends on your specific diagnosis, as I understand that the genetics of this disease are not universally the same. Still, I would think that regular monitoring of the upper GI would be part of your regimen, regardless of negative findings on prior scopes once you have been positively diagnosed with FAP.

http://my.clevelandclinic.org/...n_cancer/dd_fap.aspx

Good luck!

Jan

Hi Jan, I agree with you about the necessity of finding an actual FAP/Gardner's Syndrome specialist. I'm very skeptical about finding one here in Mexico. Actually, I was surprised when the GI told me that he knew of FAP/Gardners and that he had met my surgeon from New York... No, he's not an FAP/Gardner's specialist. In fact, the sign infront of his office doesn't even mention GI, but Surgeon... He's one of 3 surgeons here in Guadalajara whom perform liver transplants... was a recommendation by my wife's gynecologist who shares the same building as the GI... When I saw the sign without GI on it, I get a bit concerned. Then he mentioned having met my last surgeon Dr. Gorstein, supposedly #1 in the field of J-Pouches, although he gave me a bad impression due to his rigidness and lack of accessibility. But what can you do when you are God? In any case, I've never had the highest hopes here in Mexico... for many different reasons. I do believe that there are good doctors/surgeons who trained in Mexico City or abroad. However... Mexico is a very corrupt country where you can buy your way into an advanced medical program... Here you can buy a career in teaching even if you didn't go to college, believe it or not... Does that mean there aren't any good doctors or teachers? But, the risk level is much higher here because the quality control is much lower... And it's not due to lack of money/economy. Mexico is between #10 and #15 of the world's wealthiest countries... It's a very complicated life. For some more complicated than for others... Money greatly changes things. Truthfully, I don't know what I would do if I were diagnosed with a serious issue, such as kidney disease... or cancer of the... Not seeking sympathy. The world is too big for that; we are too many people for the issues of one to come before the issues of the rest. Issues of one are the issues of that person and of those who may be closely affected. However, there are so many people on this planet who, even if they knew what was wrong, they wouldn't have the means of solving the problem. I remember learning at least 30 years ago in elementary school in Central Jersey that we were 4 billion human inhabitants on this planet. Today we are approaching 7 billion... Life is magical (my life and that of my wife) although extremely difficult and worrisome... especially here in Mexico. Margarita and I built something (small by U.S. standards) in the 9+ years we've been together... What we've saved is for protecting the business. If a disease will kill me, there is no reason for it to kill Margarita's future and what we built together...

Ross