Anybody else developed this condition after K-pouch surgery? It's been almost a year since getting my pouch and all my blood work have always come back clean, but this time H&H were low to the point where I'm going to need weekly infusions. By the way my CMP were all normal. The only thing I can think of is the KP, perhaps I'm no longer able to absorb iron...
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My iron, feritin and B-12 levels dropped below normal about a year after my BCIR surgery. My GP has me take a ferrous sulfate tablet plus Vitamin C daily plus a B-12 sublingual tablet. After starting this routine, my blood levels returned to normal.
I give myself a B 12 shot every month, and have been doing so since my colon was removed. B12 is absorbed from food in the colon, hence the need to supplement it once the colon is removed. But B12 is different than iron, which is your problem.
When I had the J pouch, and chronic pouchitis, I had chronic anemia with low ferritin levels and low H&H. episodic iron infusions corrected this. Now I t's fairly clear that the problem was chronic anemia from inflammation, as the problem hasn't presented with the k pouch. Don't we count our blessings!
All this to say I can't really answer your question. Sorry. You might want to rule out whether there is any inflammation. They can test for levels of inflammation. Also, it might be helpful to review your diet with a dietitian to confirm whether you're getting enough iron. Or try supplements, although I found them tough on my stomach. Keep us posted as it's an important topic. Janet
It's weird because I never had any issues even when I had the ileostomy with protocolectomy surgery where I lost good amount of blood. But 2 bags of blood transfusion I was back on track and subsequent blood work were all normal. Everything happened after K-pouch surgery. Also forgot to mention I have Vitamin D deficiency (i work night shifts), which is prob. the reason and why I'm tired all the time.
Bill it's good to know I can take iron PO because my primary made it seem like it won't help me and that I'll need to have infusions periodically.
Janet, surprisingly vitamin B12 was normal even without a colon. I have appointment to get scoped next week to see if there's any inflammation going on.
i'm not totally surprised that your b12 was normal, as was mine for many years. then all of a sudden it wasn't. i don't do the injections every month and the level is ok. get you vit D to normal!! you need it for your bones. what is your ferritin level? iron level? with my chronic anemia the blood doc/hematologist would get me an iron infusion if the ferritin dropped below 60--not the normal upper range of 20--and my symptoms merited it. remember that too much iron replicates the same symptoms as not enough. best to get a hematologist involved, along with your GI and pcp docs. good luck. janet
Just an update. I got scoped and no inflammation was found. I was referred to a hematologist where I had a total of 8 Iron infusions to "fill up my tank" due to iron deficiency anemia. After the infusions, I went on daily Ferrix (Iron capsules). Numbers looked good on my 1 month follow up, on second follow up (3 months later), numbers are treading low again, and I'm prob. looking at more infusions.
Unfortunately, I've had nothing but problems with absorption issues too since my valve re-do on my Kpouch in August. My health started rapidly declining (tired, low energy, low appetite, blood loss, painful intubation). I didn't know I was suffering from pouchitis (I was lucky to never have it after my 2008 colectemy). After the hospital regime of blood transfusion, Antibiotics, potassium, I seemed to be better. But I started slipping again in October & resumed & increased oral antibiotics & iron to no avail. Another hospital regime and carried on. Now after my third bout, I finally understand I will need antibiotics and IV iron infusions going forward. It was explained to me that small bowel surgeries affect the ileum - where the absorption of iron begins. So malabsorption is a big problem for many pouchers as we all know. To add insult to injury, something happened to my pouch/valve with my last hospital stay. I absolutely could not intubate, it would go through the valve and hit a 'wall'. I was in a hospital that had no clue about Kpouches, so I waited 14 hours without intubating before my GI could scope me. Appears something slipped, nearly at a 90 degree angle to not allow the tube to reach the pouch. It literally happened in a hour---I intubated fine at 2pm and at 3pm, it wouldn't go in- nothing to indicate something slipped? It took 14 hours for the hospital staff to determine what to do- no one wanted to touch this kpouch. Now I have a small catheter in (nothing like the waters catheter) to allow stool & air to empty in an ostomy bag. Rather than go to any surgeon around here who may or may not know what's going on, I'm going back to see Dr. Dietz (formerly of CC) at University Hospitals- he's the expert who created & fixed my kpouch. I fear this may require another surgery to fix, or he may tell me the kpouch isn't working for me. I just don't know. But I have painful twisting feelings in my pouch area all the time, and I cannot eat anything but soup or pasta given the in dwelling catheter is so small. But I am so thankful I have I can pass stool & air. Those 14 hours without intubating in the hospital were horrendous. I used this site to see if I could find anything on why I couldn't intubate and reread a lot of Sharon's posts, wondering if I did something or wasn't doing something. I love my kpouch and hope it can be saved. But more surgeries when I've had it less than 2 years worries me. I dread going back to the bag, but I will respect & follow whatever Dr. Dietz recommends. Sorry I digress, but I truly understand your plight of iron infusions to refill, as I am in the exact same boat. I have to check my tank too so if doesn't get too low. Now that I finally figured how to keep myself healthy, I'm hoping my kpouch can get back to functioning too. Thanks for your input- and letting me digress- always helps! Kara
PS- it was recommended I take B12 shots too; what can anyone tell me about them? Are they prefilled injections like Humira or Cimzia & do I inject them or my doctor? My GP said she would prescribe them, just curious of process? Thanks!
kara--i feel so badly about your predicament of the valve slippage or worse than that, who knows at this point. (can't we get a little plexiglass window installed in the canal to monitor valve's behavior?) and add to it the pouchitis and now iron deficiency. this is all so difficult to work through. it always amazes me how we all can become agents over our health care and do not submit to victimhood--this site has helped me in doing so and i know you use it that way also.
to answer your question re B12 shots. it is not preload like humira, but rather the druggist gives me syringes and needles and i buy the med. i shoot it into my thigh, it is very easy to do. if you think it is going to hurt it will, if you think it is less of a hurt then bumping into something or pinching yourself you will realize the pain is that little. once i thought i had hit a vein, but the reality is the vein will roll and protect itself from my stupidity!! another option is a nasal spray and perhaps your insurance will cover it. it's $$$
i think i previously posted that my anemia is completely gone since i've gotten the k pouch, and i attribute it to no more pouchitis. at the time i had pouchitis the hematologist suggested the anemia was caused by chronic inflammation and he was right. no pouchitis and no anemia. i have stuck to my no refined sugar and few simple carb diet and irrigate almost every time i intubate as i don't want to tempt the pouchitis gods that demonize us. maybe it makes no difference but who knows .....
my biggest problem since the k pouch surgery is dehydration and subsequent kidney failure if i don't catch it in time. that's aside from third world toilets not being k pouch friendly.
when do you see dr. dietz? i'll be interested in hearing what you think of university hospital in comparison to cc. i hope for the best outcome for you. you're doing an amazing job of managing all of these problems. keep it up. janet
My iron is also low enough to need IV iron. My colon was removed and j-pouch created in December 2016. In March 2017 I had my takedown surgery which was followed by a massive c-diff infection. Had major surgery in August 2017 to fix a bowel obstruction caused by an internal hernia where the intestines fell back and started to attach to my ovaries. In November 2017 I had my second takedown surgery and I'm not sure the inflammation has gone away. In December my total iron was 25. About a month ago it was 13 despite taking oral iron.
So sorry to hear what you have gone through. Terribly exhausting. I agree that you are more than ready for IV iron, but unfortunately I can’t write out the script. There is now an IV iron in one infusion instead of five spread out over 10 days or so. And it only takes a half an hour of being in clinic. What is your ferritin level ? B12? I think that iron pills are not effective because they don’t dissolve until past the beginning part of the intestine where Iron is absorbed. Or iron is absorbed in a part of the intestine but that has already been taken out. Once your iron is back up I personally think the best remedy is Floradix, a liquid herbal iron. My acupuncturist recommended it. I have a much longer story Of personal experiences with iron pills to back up my assumption.
my J pouch had way too much pouchitis, which is why it was replaced with a K. Throughout the chronic pouchitis I had chronic anemia. It so happens there is an anemia Caused by inflammation. Took me years to be informed of that. Keep us posted and look through this site for additional information from others who have also experienced this problem. janet
(1) I am looking for info on David Dietz so anyone with info and/or experience with him, PLEASE PLEASE reply.
(2) Regarding anemia: Blood clotting factor is mostly produced in the colon and since we don't have colons, our blood does not clot as fast as the average person's. Our catheter holes have slightly sharp edges, even if they feel reasonably smooth, so we have chronic 'micro-bleeds' that can eventually make us anemic. Even if you don't get low enough to qualify for that diagnosis, you will notice that your ferritin level is probably near the bottom of the range, which is 15 - 150. This is the way to take iron to get your ferritin up and increase iron levels overall:
(a) buy "gentle iron" formula -- Solgar's is good, 25 mg capsules.
(b) the procedure, to do no more frequently than every OTHER day, with no food for 60-90 minutes before or after: start with 25 mg of iron plus 500 mg of Vitamin C and 8 ounces of water -- the Vitamin C and water are both MANDATORY, not optional. If you don't drink enough water, you will find the dark green-black output to be very, very thick, an ordeal to flush, and the next time you'll remember to really drink 8 ounces!
(c) If you're okay with this, able to flush easily and not getting nauseous, go up to 50 mg and stay there. Have your doctor order lab tests for iron, ferritin and other iron-related stuff after 3-4 months -- you don't want to exceed the healthy range. Don't go nuts, it will take a while to get your ferritin and iron levels to a good place.
(d) when you get to the upper end of the ferritin range, just do 25 mg at a time for maintenance, and do iron labs on a regular basis.
And if you have info on David Dietz or other surgeons you would recommend, please contact me by replying or private message.