I've had my pouch for almost 5 years. Since then I've had many iron and blood transfusions. Just had another blood tranfusion last week and I'm getting tired of it. I've had a couple of capsule studies and a lot of pouch scopes. My pouch has always been ulcerated but the rest of my small intestine looks normal. I don't see all that much blood in my stool to justify the anemia. I do get partial obstructions that I am able to treat myself with liquids, hot baths, etc. I was diagnosed with systemic lupus a little over a year ago. My doctor feels I may be getting an ischemic bowel because I am a horseback rider and that's where my anemia is coming from. He has not seen any visual sign of this. I love to ride and I hope I don't have to give this up. Does anyone have any ideas? I'm very desperate!Kereen

Are you being treated for the ulcers in your pouch. Maybe the best bet is to do what you can to minimise the ulceration in your pouch because that could be causing the anaemia. It has in my case but I seem to be able to maintain a decent blood count these days with a combination of one 200mg iron tablet a day and VS#3 (previously when untreated my blood count dropped as low as 4.6). I'm not saying there couldn't be other issues that are causing the anaemia but the ulceration in your pouch has to be a prime suspect.

Hi Kereen,

Another thing you might want to check is your B12 levels. It can take up to 4 or 5 years for our body's stores of B12 to deplete and cause symptoms like you describe.

B12 deficiency can cause anaemia. It is absorbed in the termminal ileum which is what your j-pouch is made from and if you have pouchitis all this time you may not have been absorbing sufficient quantities due to the inflamation and ulcers.

Also, if you are on any proton pump inhibitors for reflux or gastritis etc, this will interfere with your stomach's ability to make intrinsic factor which is what B12 binds to before being carried down to the terminal ileum for processing.

Here's a couple of links to some information about B12 deficiency:

http://cks.library.nhs.uk/patient_information_leaflet/b12_deficiency

http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=42

Good luck, hope you feel better soon.

Shell

I second Shell on the B12. I was very deficient in B12 and was constantly anemic or right on the borderline. When I started getting B12 injections the anemia improved and as another MAJOR improvement my migraines all but disappeared.

I do have my B12 levels checked regularly and they have always been normal. I use canasa when my pouch is really irritated but honestly I don't think my pouch feels all that bad most of the time. Maybe I'm just used to it now. I take prescription iron supplements as much as I can. I have to take them for a week or so and then take a break for a week or so because they are extremely irritating to my pouch. Does anyone else struggle with taking iron supplements? I wish I undestood the connection between whatever IBD I have and lupus. They must be connected and related somehow. My doc wants me to start humira to see if it helps. Any thoughts?

I had my j-pouch surgery two years ago and I was just in the hospital for a week for hemolitic anemia.

They say the anemia is linked to ulcerative colitis I have.

Now my immune system is eating up all my red blood cells, and my spleen is swollen pretty bad because of it.

I'm back on prednisone to hopefully get my spleen back to normal, 70mg.

If not they said they might have to take it out

I am on Humira and according to my rheumy, Humira is contraindicated in lupus because one of the side effects is drug induced lupus. I'd double check on this with your rheumatologist before going on Humira for IBD. Also, why aren't your doctors treating your lupus more agressively, since anemia is one of the primary problems associated with lupus? If it is being treated agressively, please excuse my assumption that it is not. However, perhaps you need a change in your lupus treatment as the drugs used in treating it can also be causing your anemia... Of course, it can be a combination of lupus and/or its treatment, and GI bleeding from IBD.

http://www.hopkins-arthritis.org/ask-the-expert/systemi...ated-by-tnf-748.html

http://www.lupus.org/webmodules/webarticlesnet/template...ticleid=98&zoneid=17

Jan

This message has been edited. Last edited by: Jan Dollar,

While I really don't have answers for you, I'd like to say I feel your pain with the riding. Don't let anything get in the way of it. I did, and I regret it so badly- lost all my muscle, lost my horse...now I just can't get back into it. Please, please, don't give up riding!

Thank you for the replies. Jan - I was also wondering if the lupus and IBD were jointly causing my anemia. I see my arthritis doc soon and will discuss it with him. They may need to treat my lupus more aggressively. I'm only on plaquenil and prednisone tapers now.

Chelsea - Thank you for the message about my riding. Riding is my passion and I'm very distressed about my doctor thinking it is the cause of my problems. I'm not a trainer and I don't ride every day. I can't imaging life without it but I don't want to make myself sick either. I guess I feel like my doctor is grasping for straws at my therapeutic expense. I will take it easy and see if my blood counts are better but I won't give it up all together. I hope you can get back into riding.

Well, at least it does not seem that you are on medications that can cause the anemia. But, it is important to have your doctors be a team and work together to solve these issues. Do you also see a hematologist? If not, might not be a bad idea to get a referral. He may find something that the others miss...

And yes, for things that are very important to you, such as horseback riding, you do need to be proactive and make sure that the doctor's recommendations are sound, and not just grasping at straws as you say.

Jan