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Posted 6/7/2012 11:53 PM (GMT 0)
I had upper and lower GI scopes today. Two for one special, I guess. Everything was good. No ulcers or tumors anywhere, the pouch looks great, and no sign of anything that would indicate Crohn's. They did take a biopsy to check for celiac disease so I will have to wait and see how that comes back.

I emailed my primary doc asking what are going to do now since I'm still having significant anemia symptoms. She is suggesting bringing in a hematologist to work with us and possibly getting some additional iron supplementation through shots or IV infusion. At this point I would welcome anything that will give me a little energy back!
Posted 6/8/2012 12:07 AM (GMT 0)

I am happy to hear that there are no signs of Crohn's or Tumors and that the pouch looks good.  

Hopefully, you can get some relief with the iron supplementation.  

Posted 6/8/2012 11:07 AM (GMT 0)
Was just thinking about you after reading your blog. REALLY glad to hear that everything looks clear, but not so good with the anemia. Sounds like shots or IV infusion is probably the way forwards, but obviously an understanding of why you've got the anaemia in the first place. There must be some absorption issues. Take care and hope you feel better soon.
Posted 6/8/2012 11:20 AM (GMT 0)
Run4pancakes,

I am two years post j pouch op and I still have major issues with anemia too. And no one seems to be able to answer me why. I was supposed to start iron infusions in march but didn't. Long story with my insurance. So I have been trying on my own with diet changes and adding iron supplements 3x a day as per my dr. But it hurts my stomach so I take them 2x a day and that is hard enough. I don't feel any different....still run down. So, it looks like I will have to pay for iron infusions out of pocket. My jpouch is fab....just this darn anemia!
Posted 6/9/2012 3:15 AM (GMT 0)
Ugh, Marianne! It's the worst. Really hard for me mentally right now because I'm supposed to be training for my first marathon! It isn't until October, so there is still time for things to work out. I just don't want to be tired anymore. I'm hoping if I can get the shots/infusions then things will stay where they should be and I will be ok. Have you been tested for celiac?

I see the hematologist on the 24th. It can't get here fast enough!
Posted 6/9/2012 8:40 AM (GMT 0)
If you can get the shots and/or infusion I'm pretty sure you'll feel much much better. I'm sure it'll be absorption issues due to the pouch/surgery etc. Hang in there and hope you feel better soon. Plenty of time before October :-) and you're fit already so try not to worry too much. S x
Posted 6/9/2012 10:31 AM (GMT 0)
Is iron absorbed in the colon or small intestine
Posted 6/9/2012 10:52 AM (GMT 0)
Sarah: I keep telling myself, "Patience. Patience." but it's so hard when you want to be training. I know you understand. I've come back from much worse though and raced successfully so I'm keeping my chin up! My plan for the coming week is to walk the mileage on my schedule. That will be something at least and I should be able to handle it.
Posted 6/9/2012 11:04 AM (GMT 0)

allswell said...
Is iron absorbed in the colon or small intestine

The small intestine absorbs all our nutrients.


Run4pancakes,
I have never been tested for celiac. I'm going to be making an appt with the hematologist again as well. Hope you get your anemia in check. It's the last thing for me to get taken care of on this looooong journey!
Posted 6/10/2012 11:59 AM (GMT 0)
Ladies, i know this sounds say out there, but I would have your thyroid checked also. it can present similar to anemia.. run down, and such. And the celiac is such a simple blood test, HOWEVER, if you only have a gluten sensitivity it MAY NOT show up on the tests. You almost have to self-diagnose that one. I had the blood work done for celiac, and my doctor said it was negative..I had wanted to lose a few pounds because i was uncomfortable with my weight ( not numbers, but just size), and I went on Dr. Gott's no flour no sugar diet..and ALL my symptoms disappeared! So I made an appt. with my gastro guy ( who said i didn't have celiac), and told him what was happening..he told me " there is no reason for you to be on a gluten free diet, it is hard to do and you won't be successful."
I promptly changed doctors, have not eaten (intentionally) any wheat in 9+ years, and feel amazing compared to what i did before. It is hard, but there is so much more food out there than there was, it is not really hard.
I suggest a thyroid check, then try the gluten free diet for a couple of days..and see how you feel then. Of course, check with your doctor first...but it can't hurt.
Posted 6/10/2012 4:26 PM (GMT 0)
I think it is amazing that you can train at all!!!! I know what you mean though. A few years back I stopped training because I just didn't have the energy. Working full time, mothering two children (at the time) and battling a chronic illness and all of those meds was just too much for me.

I am SO hoping to get back into training in the fall. I hope to be happy with the little victories at first; I am used to placing in the top 25 at huge road races, so I know it won't be easy to start slow and take it from there.

You have been through so much. I have followed your posts and been so happy for both your and ironmum's physical accomplishments. I can't get over your determination to do what you love.
Posted 6/12/2012 2:52 AM (GMT 0)
Had a series of nine iron infusions last year while I had a diverting ilesotomy with a failed jpouch intact. I had been feeling very poorly and extremely fatigued for a very long time and things just took a turn for the worse when I started training for a half marathon. Turns out not only was I anemic but my iron stores were completely depleted. I had to be demanding to get doctors moving on it as I feel I had been left anemic for over a year. But after about my fifth infusion I felt like an entire new person.

It is my understanding that iron deficiency is a common problem for people with jpouches, but the medical community does not know why yet. Also it is common that oral iron supplements cannot be tolerated for many of us IBD'ers. Seems like this is something all of us will have to keep in check indefinitely.

My ninth and final infusion was 3 days before my first half marathon. Would've never made it if I hadn't got the iron issue resolved.
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