Hello j-pouchers. I recently went in for allergy testing because I was getting hives. I got some blood work done, and found out I was really anemic and didn't know it. The numbers (8.6 is one I can recall) are similar to those when I had my colon.

I went to the gastro and had a test that showed blood in my stool (although I'm suspicious that it was blood from my very sore bottom). I had a sigmoid and gi scope done the very next day. The pouch is fine (no pouchitis), and there's two very small ulcers the doc described as large as the head of a pin. He's suspicious of Crohn's, but still baffled about my anemia considering he saw nothing.

I have to go in for the barium GI scan to make sure I can swallow a pill cam okay for even more testing.

Anybody have ANY experience with this....have you lost blood and not even realized it nor felt sick? I would imagine had I lost this much, I would have felt sick...or if it is Crohn's, I would be in pain?! I'm so worried about it being Crohn's...I've heard that people often loose their pouch because of it. Yikes!

Yes I have. My blood count had slowly dropped to 4.6 without me even realising - I was even doing sets of 10 pullups in the gym and heavy squats and things - God knows how I managed that! My tests all seemed to come up negative though - they included a gastroscopy but I can't remember what else. I think they may have given me a barium x-ray to look for Crohns. Nobody found any crohns though. I suspect I'd probably had chronic pouchitis as I get pretty clear bleeding now and I am now diagnosed as having pouchitis which comes up on each scope. The other thing my GI was testing for was Coeliac (hence the gastroscopy) - might also have been for stomach ulcers.

You do not have to have bleeding to have anemia. Sometimes there is anemia that is caused by chronic inflammation. Basically it suppresses the bone marrow and blood cells just are not being made quickly enough.

Another factor is if you are on long term acid blockers for acid reflux and similar disorders. Suppressing the stomach acid too much will interfere with absorption of B-12, which is important in the formation of red blood cells. Also, if you have chronic pouchitis, your B-12 absorption may be reduced because it is only absorbed in the terminal ileum.

Plus, you may not be absorbing enough dietary iron. If you are taking iron supplements, do not take them with milk products or other supplements containing iron. You should take them with vitamin C or orange juice, as the ascorbic acid aids in the iron absorption.

You lose any link in the chain and you develop anemia. If you develop anemia slowly over a long period of time, the body compensates for the difference. This is why you do not feel different. If you hemorrhaged to develop those numbers, you'd wind up in shock.

Jan

Soooooo....the results came back from the biopsies. Although the Dr. didn't see anything, the pouch has "nonspecific inflammation" and my stomach has "chronic gastritis" that is not a big deal. From what I can gather, this means my having chances of having Crohn's just decreased big time. I still have to go in for the barium in prep for the pill cam (Barium=next Thursday).

Good to hear your results. I was once thought to have Chron's due to inflammation in my small instestine instead of UC (what a scare)but when my tests came back I was told I had a bad case of pouchitis and needed to be treated(IV antibiotic then oral). I previously had pouchitis and was treated but I guess it didn't take it all away. Jan Dollar reply seems right on. I have a blood disorder called thalasemia minor and I have not bled since I had my j-pouch in 1991 td 1992 and my blood counts are up and down sometimes needing transfusions. You may want to see a Hematologist. Also, I'm not sure what gastritis is but if it causes gas what works best for me is called Charco Tabs their all natural gas pills that you can get at Walgreens, Brooks (if you have them) or at a health food store. Take with meals and NOT with any meds they can cause your meds to be less effective but I feel their worth it. Keep us posted.
Best of luck

Jessica

More awesome news...

The pill cam came back negative on everything except some inflammation in the rectum. So...it's off to the hematologist. The gastro. told me they are going to tell them to test me for blood borne pathogens I may have picked up from my past blood transfusions...yikes!! Not too worried about that though; they're pretty safe. I'll post after the hematologist.

Hello Zapped102, I'm in about the same boat it sounds like. I've been anemic the past year. I've had 2 blood transfusions with 2 of my 4 surgeries this past year. Crohn's has been mentioned along with other things as well. I truely don't believe I have crohns. After reading what Jan wrote about the acid reflux, I'm thinking that hit the nail on the head for me. I've been on Acid relux meds for years now. Maybe that's part of it. I do have Pouchitis right now, and he is scheduling a lower and upper GI along with a barium something scan. I also have some sort of blockage, cramping constantly, very few stools, always really runny. Good luck to you and I look forward to hearing your results.

hello everyone. I am having trouble navigating this site. My daughter is 17 and having her colon removed on March 1 2007 due to UC. Can anyone help me? I would like to be able to chat with someone. Candi

Hi Candi - if you go to the chat room most evenings you'll usually find someone there around 9pm eastern time. Thursday night is the 'regular' chat night when you may find more people. You can also just pop in at any time to see if there's anyone hanging around.

Also, if you'd like to post questions or concerns, just go to the general discussion forum and click on 'New' and then click on 'Discussion'. Posting in the General Discussion forum will result in more responses because more people usually drop by there.

Wishing you all the very best of luck next month.

kathy

Yes Candi, there are plenty of people who can help you here. If you need to post specific questions and get advice quickly you can post in the General Discussion area (the first topic on the site). Also you can use the Find button up on the top nav to search by topic. There is so much info here it is unbelievable.

Last but not least there is another forum down in the topics for family and friends. You will find many compassionate parents and teenagers who have been through this surgery and are doing fantastic. I am a different case where I was diagnosed with UC and then 3 weeks later at 35 needed the surgery in an emergency circumstance. It is my understanding this is a much better surgery to have on an elective basis. Even in my situation where I had not had the horrible experience with UC beforehand I still think of this surgery as a saving grace. I hope this finds you well and you will get all the information and support you need here. Just remember one thing that a lot of people here are having complications, there are many that never have a complication so don't get too freaked out by what you see here because it is a bit skewed. Just thought Id mention that. I think there are plenty of people here your daughters age that will be very helpful to you. I wish you both the best of everything. Kim

Went to an oncology practice yesterday to see a hematologist (the whole time freaking out because I was sitting in a Cancer center). Good news is the doctor thinks I'm just flat out iron deficient. While getting an iron transfusion (I need 8 more over the next 8 weeks), I got some initial blood work back and everything besides the anemia checks out O.K. (i.e. the tests on the liver). Hooray!

Hi there,
I just received a call from my new specialist that I need to have the video capsule pill because he is very positive that I know have Chron's in my small intestine because I going to the bathroom all the time I have cramping just like UC and I have a horrible rash on my leg and my iron is very low I have so many iron transfusions I can't even count anymore and I am due to go back again to have one one a week at the cancer center just like the other person stated. Buy my medical insurance is denying the video capsule so my specialist it fighting this I have Blue Cross of MA. Right now I am just frustrated I didin't think you could have UC then later have Chron's I need help and can anyone help me out??? I was wondering if I was misdiagnosed? Buy my mother has Chrons I don't know anymore???

Hi Amy,

There have been quite a few peple who have been re-diagnosed with Crohns after the initially being told they had UC. I am going through tests myself to find out if I have Crohns after over 30 years with a UC diganosis. The fact that your mother has Crohns could be a facter in your new diagnosis.

I don't have much advice to offer because I am still seeking help and knowledge myself, but I really do wish you well in whatever happens.

It might be better if you post this on the General message board where hopefully there will be others who can offer you more practical advice.

Take care

Shell

Hi Shell,
I know I started to talk to you on the chat but you had to leave I know Karen said you were having some problems. I am so sorry to hear that you are going through tests like me. I think I am more worried they will find Chron's in my small intestines and it will be bad that they will have to remove my small intestines and then I will have a ostomy bag for the rest of my life I had the bag for 3 months after my first surgery and I passed out and ended up in the emergency room from looking at it I could only change it myself with only 2 weeks left having it. My husband changed it he is an EMT and my visiting nurse. But it doesn't help knowing my mother has Chron's they first thought it was her appendix she went in for emergency surgery to remove her appendix and saw her appendix was fine she had Chron's. Hopefully we both will get more info from other people because right now I am scared and confused. Thanks again and I wish you the best of luck also right now I need to try to find a way to get this video capsule covered by BCBS of MA my parents offered to pay for it but I need to find out the cost? Does anyone know?

Amy

Thank you, Mr. Copperhead.

Amy,
Pill cam will run between 1,000-1,400 dollars. Perhaps you would be able to contact given imaging to get assistance if the insurance company continues to deny coverage.