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Hey Everyone. This might be a little more directed to the JPouchers with 6+ months post takedown. I've been Anemic since my I've been finished up with my surgeries and I was wondering if any of you have gone through the same thing. I'm almost 8 weeks post takedown and my last blood test was a couple of weeks ago. I was wondering for those that have went through it how long it took to get you red blood count back to normal. I was hovering between 7.5-8.5 every time they tested me. Did you also let it get better on its own or did you see somebody to help because I have an appointment with a Hematologist coming up to see if they can help get me out of the Anemia funk. My surgeon said this is normal after this surgery and it will eventually work its way back to normal but did not give me a timeline. Just looking for some advice and experiences you might of had. Thank you in advance.

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I had the same problem for the past couple of years since my surgeries but I was also anemic before the surgeries because of the bad bleeding I had with the UC. So I think my body was just totally depleted. The only thing that helped me this past year was having a series of iron infusions. They gave me that boost that I needed because my body just couldn't catch up on it's own. I did see a hematologist for this and I go every few months for a check up with him. You may be able to nip this by taking oral iron. I tried that first but it didn't help. My hemoglobin is finally normal now. My iron stores are still a tad low but we are working on that. I felt so much better after those infusions. It was like night and day. I would definitely recommend seeing a hematologist. Good luck!
mgmt10
I was dangerously anemic after my surgeries. Despite having 2 blood transfusions, my hemoglobin stayed on the lower side. I've more or less had to remain on oral iron supplements since a few months after my colectomy. It's not a big deal as I generally tolerate them pretty well.

That being said, it is very common to be anemic following major surgery. The colon has a lot of blood vessels, so you potentially can lose a lot of blood from the surgery even if you don't have a major bleed during the procedure. Also, iron stores take a long time to build back up once reduced or depleted, so that being said, I'm surprised that you don't seem to be on any type of supplement in the interim to help you boost your levels back up. You might only need temporary supplementation until your levels normalize. But you should definitely inquire about it. Iron infusions are another option that can quickly boost your levels, if you are low or if you don't tolerate oral supplements. Also look into getting your ferritin and B12 levels checked as these tend to go hand in hand (though if you are seeing a hemotologist, I imagine all of that would be done anyway).
Spooky
Oh I forgot to mention I have been taking ferrous sulfate 325mg 1 tab twice a day. Its been about 3 weeks to a month since I've had my blood count checked so it might just be a matter of time and take some patience. I'm definitely not as exhausted as I was a while ago so I'm hoping its been on the rise but I will be seeing a hematologist on the 23rd so maybe I can get some type of iron injection. I've heard from many people that they make you feel like a million bucks. Thanks for you input.
P
Yup, if you've only been taking it for 3 weeks, that's not nearly enough time to notice any huge difference. But if you are feeling less tired, that's promising. As I mentioned earlier, iron stores can take a LONG time to build up--you're looking at months, not days or weeks--and obviously the more severely anemic you are/were, the longer it will take to normalize. But I'm sure the hemotologist will have some advice to help you boost it faster. In the meantime, vitamin C does help with iron absorption. Another word of advice: don't take your iron supplement at the same time as a calcium supplement, if you take both. Space them out at least 2 hours apart, since calcium can interfere with the proper absorption of iron.

I generally take my iron right before bed; this was recommended to me by the pharmacist a couple of years ago and it seems to be best. I have no negative side effects from the iron other than a darkening of the stool.
Spooky
Thanks Spooky and everyone else that helps a lot. Yeah I am feeling more energy than about a month ago so I guess things might be looking up. I'm anxious to see what my red blood count is because I'm sure the Hemo is going to order a CBC but I would love to get some iron injections I heard they make you feel like Superman afterwards. I'll keep you guys updated after I go to my appointment.
P
Scott is correct. Iron infusions aren't without their own inherent risks. Most of the time, they are reserved for people who are severely anemic, who cannot tolerate any oral iron supplements, who cannot otherwise absorb iron normally, or who need to have their levels raised quickly, due to something such as imminently pending surgery. That is why it would be important to speak to your doctor and to the hemotologist when you consult him/her. A more conservative approach (i.e. diet and oral supplements) is usually tried first.
Spooky
Iron doesn't work quickly, though infusions are a bit faster than oral supplements. Iron is a key ingredient in hemoglobin, so the body can only manufacture hemoglobin if there's iron available. Hemoglobin is a key ingredient in red blood cells, and only newly manufactured red blood cells can use the new hemoglobin. After you have enough red blood cells with enough hemoglobin, your blood's ability to carry oxygen will have caught up to your needs.

Sorry for the long-winded explanation. It just takes a while to make enough of the new red blood cells. I'm happy when anyone feels good in the morning, but it's not because of last night's iron supplement.
Scott F
Just wondering, what are the downsides of iron infusion? I know there's a small risk of allergic reaction, but beyond that...?

My GI is a big believer in iron infusions and very strongly against oral iron (or at least she was in my case). I wasn't severely anemic but I definitely had a whole bunch of Venofer infusions and they seemed to help. Never heard of any downsides so I'm wondering now...
P
As with anything, if you need infusions, then you have to weigh the risks against the benefits. You can google it, but from what I understand, common side effects include allergic reaction, iron overload/iron toxicity, increased risk of infection, changes in blood pressure, muscle or joint pain, vomiting/GI symptoms, etc.
Spooky
Iron infusions are only done if it is necessary and are done under the order of a hematologist. They are monitored carefully when being administered. I had a ferritin level of 4 (normal is 100+) and no amount of oral iron could boost that. So the infusions are safe when administered to someone that needs it. I had a series of 9 with no ill effects. They have made a huge difference. It's not something someone want to keep doing but they are useful in getting over that "hump" IF needed.
mgmt10
Okay so I went to the hematologist today and I've been in sales most my life so I'm a good judge of character which helps a lot when youre meeting with new Dr.s so I realized after talking to her that she was very educated and sincere about my situation. A couple things we look for from a Dr. when we aren't feeling good understanding, sincerity, compassion, and someone that actually wants to take the time to help. She didn't rush me and throw all these technical Dr. terms at me she sat there and listened to my story and let me talk and tell her my story. After she gathered all the info then she made her suggestions. I ended up giving 10 viles of blood so she could do a bunch of tests which I appreciated because I told her that's what I was there for to find out as much as I can from these blood tests because I'm ready to be healthier than Ive ever been after what I've suffered through. In also got a B12 shot before I left which made me feel amazing. She is thinking I am iron deficient because I have been severely anemic for a while with red blood levels half what they should be. She told me to call her tomorrow for the results and we'll figure out the best plan for me. She mentioned the iron IV drip if she sees I have a deficiency. She assured me before I left that they were going to get me better and take care of this anemia problem. I felt very relieved after leaving there. I guess we will find out my path tomorrow after the results come back. I will let you guys know what she says. Thanks again for your replies.
P
It's always nice when you feel comfortable with a doctor. Boy, I have seen some real jerks! The hematologist I see I happen to know on a personal basis too so I know he isn't/wasn't giving me a line of bull either and I trust him completely. They run tests on your blood a GP or a GI wouldn't run so I have no doubt you will find out a lot when you get your results. Hopefully you can take care of this with oral iron but if you need the infusions, they will help a lot. They won't have you do them unless you are really depleted.
mgmt10
Well I got a pleasant call from the hematologist today saying my red blood count is showing 9.9 which is great because it was 7.5 about a month ago so I'm moving in the right direction. I might just be able to get by using the oral iron supplements and not have to do the iron IV drip. I will follow back up with her in 2 weeks to see where I'm at. I knew I was feeling a little more energetic. I hope I can get back into that 11+ range and feel normal again. Fingers crossed but as of right now I feel good about the future.
P
I Agree with most of the comments. I am getting IV iron called ferraheme. It's a push through the IV. It takes only a minute, but you have to sit for about 20 minutes after getting saline.
I became anemic 10 months after BCIR surgery,11 years ago. It was so bad i had to get some transfusions. HB was 7! Oral supplements gave me severe cramps. Ferraheme is the third type of iron I have received over the years. Usually you get 2 treatments, one week apart. I can go anywhere from 3 - 6 months in between.
As long as i keep on top of blood tests and ferritin levels, the ferraheme works great.
Good luck with your treatment.
marz
I LOVE my iron infusions. There is no way the body can ever get that much iron in a pill. I was negative 14 once when I got my first one. Right before being diagnosed. I got 2 more since surgery and now I am fine and haven not needed one 1.5 years out. So worth checking into if you don't get up to speed. My leg cramps get so bad, that is usually my sign that I am low and the extreme need to eat ice is a classic sign as well.
vanessavy

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