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Removal of ileocecal valve and loss of nutrients?

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Posted 8/22/2011 10:12 PM (GMT 0)
Hi,

I am 2.5 months out of surgery where about a foot of small intestine (terminal ileum) was removed along with my ileocecal valve, cecum and appendix. Thankfully my recovery has gone beautifully and I am so happy that I took the step to have surgery. Eating without pain is so nice! However, the one thing that is NOT improving is anemia. In fact based on my latest labwork it's getting worse. I did NOT have anemia, b12 or vitamin d deficiencies prior to surgery. I expected to be anemic right after surgery, but not for it to continue and get worse. My question is, even though I didn't have a ton of small intestine removed, could my body be having a hard time absorbing b12 now that the ileocecal valve is gone? I am wondering if I am suffering from anemia due to lack of B12. But I don't think you can have small bowel syndrome with such little intestine removed. I start out the day feeling ok, but after lunch I am so shaky and weak and am going to bed at 8 pm each night.

Thanks for your help!
cmommy
Posted 8/22/2011 10:29 PM (GMT 0)
I've only had about 6" total taken out, and I lack B12. I get injections monthly. They can check your B12 level easily and the injection is super easy (you can barely feel it). Since your body absorbs B12 in the last portion of the ileum, having any of that area removed can lead to insufficiency.

After my first surgery I was anemic for some time, but have not had problems with it since then, so I don't have much experience with that. Are you taking iron supplements? Maybe an extended release form (if you're not taking that) could help you feel better longer in the day? Just a thought.

I hope things improve!
Posted 8/22/2011 11:04 PM (GMT 0)
I had 9ft removed, I was anemic for years, I'm talking 30 years anemic, never felt different, but it was anemia brought on by surgery, and the removal of disease, I never had iron shots, I can't tolerate iron anyway, then it just dissappeared. I also don't bleed from my gut, never have. my point is that nobody could figure out why I was so anemic, I was the only one who put 2 an 2 together, I also read that major surgery like the kind I had, could absolutely cause anemia.JMHO

AG
Posted 8/22/2011 11:37 PM (GMT 0)
You will not absorb the B12 since you have had your TI Valve removed. You should be getting B12 injections for life now. I get them every 2 weeks, but most get them once a month. This is something you should discuss with your doc. Also, after my resections I had to have an iron infusion becuz I became so anemic. It really helped and within about 3 weeks I was feeling soooo much better. Good luck!
Posted 8/23/2011 5:13 AM (GMT 0)
Nanners, my surgeon had mentioned that I might have trouble with the fat soluble vitamins (D,E,K, & A) but never mentioned B12. I've seen two gastroenterologists since the surgery and both have really downplayed the absorption issues. I used to have them check levels whenever I had blood work, it wasn't routine and wouldn't have been done if I hadn't insisted.

Would the B12 issue show up rather soon after surgery or could it take years?
Posted 8/23/2011 11:17 AM (GMT 0)

I had 18" removed at my TI.  I do monthly self injections of B12.  I have issues with many vitamins due to that area being removed.  I sometimes stabilize to good level of B12 on my lab work, but if I go several months without injection, I drop way down again.  I find its best to keep my maintenance.  I can always tell when I am due for my shot as i get very sluggish and my tongue feels swollen.  I am very pale skinned to start with, but I seem to get even more pale right when i am due too.

Dagger - My B12 issues do not show on every lab test.  As I noted above, sometimes it will level off and look good for a period of time.

Posted 8/23/2011 2:20 PM (GMT 0)
Thanks for the info. I looked up the symptoms for B12 deficiency and I have quite a few. The symptoms crept up slowly so I though it was stress. I'm making an appointment with my doc today.

I am really annoyed that my gastro docs never mentioned it and downplayed any concerns I had.
Posted 8/23/2011 8:30 PM (GMT 0)
cmommy - did they tell you what type of anemia? My understanding is that they should be able to identify from your labs whether you have a B12 deficiency or an iron deficiency.

I had that much taken out at my TI almost 12 weeks ago + another 24" higher up in the small intestines. My doctors expressed that they had no concern about short bowel sydrome with "that little" taken out, though expressed some possible concerns if I had a subsequent surgery, depending on how much would be needed the next time.

No short bowel with one exception - With my ileocecal valve gone, my doctor says I will need B12 shots for life. I was already taking shots prior to surgery because absorbtion at the valve was so bad due to inflammation and scar tissue. I think I took 1 a week for 4 weeks, then one per month since. Your liver stores B12, so you probably had plenty at the time of surgery from your diet. But, if you are no longer getting B12 from your intestinal tract, because that portion of your tract that absorbs B12 is gone, then your reserves would start to diminish over time.

If it is iron/red blood cell related, it could be your diet...if it is different than what you were eating before surgery, perhaps you are eating a low iron diet? Did you take a MIV w/iron before surgery? Are you taking one now? I can't stomach iron supplements, but I can take multivitamins w/iron.
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