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SmoothDouglas
I had my colon removed over 8 years ago (J-Pouch) and about a year and a half ago I had a nasty infection that swelled up all my glands and caused nasal blockage, sinus pain. I took antibiotics to mostly cure the thing over two months, but I still have sore lymph nodes in my armpits and a constant stuffy nose as a result. I have had blood tests to see if the swollen lymph nodes are cancerous and the only thing that turned up for concern was anemia. I took iron pills for the next 3 months and the anemia cleared up. I have not been "perfect" at taking the iron pills the last 6 months (probably every other day) and that's why I think the anemia may have creeped up on me again.

A couple weeks ago, I got a feeling on the end of my tongue that I had burnt it. I thought it would heal on its own, but it didn't. I finally went to my doctor late last week. He didn't notice anything alarming (couldn't see anything of concern is what he said). He still gave me some funky mouthwash and sent me on my way. the irritated tongue/mouth is still not gone and I've been feeling really sluggish and lightheaded lately. I'm thinking I may have anemia again....Grrrr. I've been popping Iron Pills, B12, and Folic Acid like Candy the last few days.

Is Anemia something J-Pouchers have to deal with on a regular basis? Is the Sore tongue, mouth a common sign of Anemia or is it something else? When do you know to go into your doctor for anemia?

I'm a wee bit worried.

On a side note, I am going to an Infectious Disease Doctor in a couple weeks to do more tests to see why my Lymph Nodes are periodically swollen/sore. I'm wondering if the initial sickness almost 2 years ago set the anemia off and is not allowing my infection to be completely eradicated (hence the periodically swollen armpit nodes).

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MturbervilleMturbervilleMember
All your symptoms sound typical for a J-poucher. sore tongue, dizzy, headache, etc. Have the docs continued to check your hemoglobin? Is it going down or holding it's own? Is it possible you are losing blood somewhere? The lymph node thing would be the thing I would be more concerned about. Stay on it, but don't freak out. You are your own best advocate and only you know when you are not feeling right. Don't just take an answer you are not comfortable with. Good luck to you!!
Mturberville
rachelravenrachelravenMember
HGB isn't the only thing to check with anemia. I'm sure they're also checking your iron stores? Make sure they check ferritin, iron, iron binding capacity, and transferrin for a more complete picture. I had a normal HGB and depleted iron stores in the past. I always run low on stores, but my scale tip came with a copper IUD that gave me 14 day cycles.

Autoimmune diseases can cause cyclical swelling of lymph nodes. Something like lupus can do that. It doesn't mean it's cancer... but it's something.

The tongue seems like it's probably a manifestation of something like a deficiency of SOMEthing... Maybe it IS because of your anemia?

Hope you get it sorted.
rachelraven
SmoothDouglasSmoothDouglasMember
Thanks for your feedback!

When I originally had the nasty sinus thing, I was given a whole bunch of blood tests. They also looked at my blood for anything that would indicate it was a sign I had cancer and it proved negative (I was clear with them to check for the big C). However, it did show severe anemia. I went to two allergy doctors following my general doctor concerning my lymph nodes. One was a crackpot that immediately thought my lymph node swelling was due to a mild dust mite allergy. I then went to a well respected internal medicine/allergy doctor. He looked over my blood work and me, and reassured me it was NOT cancer. He also reassured me he didn't think it was allergy related. He suggested I go see a Infectious Disease doctor (which I am in the middle of May).

As for the sore tongue thing, it's getting slowly better since I've been diligent at taking iron and other supplements. I've read where a symptom of anemia is a sore tongue/mouth. I just didn't know if it anemia was prevalent amongst J-Pouchers.

I think I'll go in today and see if my regular Dr. can do some blood work to check for anemia or anything else.
SmoothDouglas
L lhh65Member
Yes, anemia is a problem for pouchers, though reason is not necessarily clear. I am in the middle of getting a course of 10 iron infusions and b12 shots. Docs also don't know why I'm anemic: no known unusual bleeding, and my GI keeps saying iron absorption takes place farther up the small intestine so it shouldn't be affected by pouch, but....And what happens is that the iron you have is used to continue to build RBC, so you often don't see a problem with lower hemoglobin until the iron stores are depleted, which is what happened to me. It was understandable when I had active UC and several times need blood transfusions and iron infusions, but now it's more puzzling.
A full blood workup, as Rachel, mentioned to check iron saturation, etc., will be valuable for you.
Good luck. Hope things improve for you.
L
SmoothDouglasSmoothDouglasMember
I went and saw my Doctor today. He's doing the blood work to test for anemia. He's leaving the more thorough tests for the Infectious Disease people to determine why I have the periodically swollen/sore lymph nodes. He also is doing a test for Tuberculosis. I guess it's something prevalent down South, but not so much up here in the Midwest. He did it more to rule out TB, than anything. I will get my test results done by Thursday.

I'm still a little light headed and still have the sore mouth, but it has lessened since I went nuclear on the B12, Iron, and Folic Acid. The thing with anemia is that it takes FOREVER to get your body back up to speed.

Oh..the joy of being a JPoucher!!!
SmoothDouglas
rachelravenrachelravenMember
If you can do it, a TBSP of black strap molasses has 25% of your daily iron needs. It might be rough at first, but I did that and tolerated it better than pills.

Also, eat something (or drink something) with vitamin C when you eat iron rich foods. It helps you absorb the iron much better (ESP. Non-heme iron), but maybe don't do iron and vitamin C supplements together, as I heard that can be a tough mix. Do them separately if you do take them.
rachelraven
L liz11Member
If your iron stores are extremely depleted, taking iron pills most likely is insufficient to help you. You will need iron infusions. Sometimes that boost of iron infusions will be enough for you to maintain levels with iron pills, iron rich foods, and other things.

another tip for extra iron, is to cook in the old fashioned cast iron pans.
L
SmoothDouglasSmoothDouglasMember
I just got back from my Doctor's Office. My Blood Work Looks FANTASTIC (although a bit high in B12 because I've been eating them like candy). So, I don't think the issues were with Anemia. My mouth is almost completely non-sore now and my blood tests don't show any indications of Cancer.

I have had a headache the last few days and a gland on my neck swelled up and was painful yesterday. It's good today.

My Doctor thinks that my issues with my Lymph Nodes may very well be caused by an Sinus Infection that won't leave my head. I'm getting a CT Scan on Monday of my melon. It could be Adenoids (my dad had those issues when he was my age) or something else causing the reoccurring sinus problems.

I still have no idea about my tongue sore thingy if it wasn't Anemia?

God Bless for all your feedback and suggestions.
SmoothDouglas

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