After reading this thread I decided to have my B12 level determined. I have been depressed, fatigued, irritable, and in general feeling crummy. I wrote it off as grumpy old man syndrome ~ this is what life holds for you now ~ get over it! I got my results today. Everything was normal, i.e. blood sugar, liver function, etc. ~ except, guess what, my B12 level. To quote the report, " The B12 level is low at 130, low edge of normal being 247". I am about five years out from neo-bladder so I guess I finally ran out! The original equipment doesn't come with a life time supply! I will be receiving a shot of B12 every two weeks for two months and then a shot every month from that point on.
I will be having a sleep apnea study done as well. Doc thinks I may have a sleep problem. To which, my wife, Rose, said duhhhhh. Doesn't help that she has been telling me that for years.
To the point of my post. Thank you all for you help. An especial thanks to Pat for her timely and informed posts. We have to all be informed patients and do a lot of our own research to get our docs pointed in the right direction. I am now hopeful that I am now pointed in the right direction and can get my "condition" turned around.
Thank you all,
p.s. Doctor said it will be awhile before I notice a change. How long is "awhile"?
Some times this whole experience has been like, "I bought this brand new power tool and they forgot to include the operating instructions."
well thanks to all of you who replied on this topic. my husband has his first appointment with his new internist in a few weeks, so we will take up the B12 issue with him. we finally switched internists two years post bladder cancer diagnosis. i don't know why we were so stupid - the last internist never sent my husband to a urologist after he complained for 7 years of frequent urination and pain at the end of the stream. finally put him on flomax - when he complained again approx. 4 months later, he was told to "take two flomax." needless to say the next thing that happened was the bladder CA diagnosis.
so this new doc went to yale medical school and did his residency at univ. of pennsylvania. much better credentials! i will let you know what he says about the B-12. if we don't get anywhere with him, then i will call our urologist. so far my husband seems in perfect health 18 months post-RC. will keep you posted. eileen
Betsy Mae...i understand your take on B12 but another thing to take into consideration is the age factor ...i know we have many young people who have bladder cancer but the majority are 60 plus....and in that group the intrinsic factor is of importance as we lose our ability to absorb B12 as we age. I can't tell you how many people in nursing homes or diagnosed with dementia are actually Bl2 deficient. Its such a simple test and doctors just never think of it....they are of the mind that ...Well, you're old you're supposed to have memory loss. Doh.......
Even though most really really great surgeons are aware of the function of the terminal ileum ...it can still happen....it may just take longer to manifest.
Vitamin B-12 is an essential nutrient that cannot be synthesized by humans. The human liver is the major site of vitamin B-12 storage, and most stores can last approximately 3 years without replacement. The terminal ileum is the exclusive site of vitamin B-12 absorption in humans. Most urinary diversions in which ileum is used are performed in a way to compensate for the physiology of vitamin B-12 absorption; however, more than 50 cm of resection appears to be the critical length at which abnormal B-12 absorption may be expected.
With the addition of intrinsic factor, Pannek et al demonstrated that 20 of 25 (80%) patients with more than 50 cm of ileum who underwent resection for continent diversion demonstrated abnormal Schilling test results.3 Patients with shorter limbs of ileum are not immune to vitamin B-12 deficiency and/or megaloblastic anemia; symptoms may take longer to manifest. Long-term follow-up studies in patients with shorter ileal segments demonstrate a 25-28% incidence of complications from vitamin B-12 deficiency. Patients in whom more than 50 cm ileum is resected are at increased risk for vitamin B-12 deficiency, which usually does not become clinically apparent for at least 2 years. USUALLY....like i said mine happened in 6 months...my baseline prior to cystectomy was in the 850 range and went down to 270 in 6 months. And i had a top surgeon.
Prior to my RC Mayo's tested my B12 to be 792 and considered that to be my baseline. They wanted me to do the shots just 3 months after RC. At 6 month check up they were pushy about shots, but at the 9 month check up when it was obvious the sublingual tabs were useless to me - they got intense about getting shots. The next month I had headaches, memory loss, inability to think straight. Physically the cramping became severe...my feet look broken during the cramps and they can last up to 3 hours. Definately not normal little cramps. This is what forced me to get shots.
We did the monthly shot, but I was getting the cramps back in the 3rd week so they moved it to every 3rd week. It has been better, but it still happens infrequently.
I just wanted to say that my original docs at Mayo thankfully knew to get a baseline on my B12 before they did the RC. I should also mention that I had already lost a foot of intestines back in the 80's as I had a strangulating hernia and developed gangrene from it. Maybe I have lost more intestines than most.
God Bless, and thank goodness for B12, Holly
For what it is worth here is my view on the B12 issue:
The normal length of small intestine is approximately 300 to 850 cm for an adult. The terminal ileum ie; the last part if the ileum is the part which absorbs B12. I would assume that, knowing this, most surgeons would use another section of ileum to fashion whichever diversion they are performing. I did ask my Urologist and he confirmed this. For this reason I am not currently being checked for B12 deficiency.
I found the reference below which I thought might be of interest too.
Influence of Continental Ileal Urinary Diversion on Vitamin B12 Absorption
The Journal of Urology, Volume 155, Issue 4, Pages 1206-1208
J. Pannek, G. Haupt, H. Schulze, T. Senge.
My Dad is getting a B12 shot today. He can't seem to store it and was getting a shot once a month for awhile. He has not had one for several months and he can feel it! His B12, when last measured, was in the low 200s, and his doc said it was "within range." Wrong!
Now, if we could only get his hemoglobin to stay above 10, I think he would have much more energy and pep. He gets blood and is fine for awhile, but then the hemo level drops. Guess his bone marrow is not making the red blood cells very efficiently. But the B12 is a start.