Is this normal??

[*Cari*]

My husband received units 5&6 of blood last night. His hemeglobin was 6.9. All 6 units have been in less than 30 days. He started Taking some iron and I asked the nurse at the dr office if there was anything else we could do and she said we just have to get this disease under control. His crp is 57 up from 40 a couple weeks ago. He's been on 60 mg steroid for a few weeks now and had his remicade treatment may 2nd. They are also increasing the remicade to 10 mg/kg and doing it next week instead of waiting till June 25th.

Is there anything we can do to help with this blood loss?

Also is drinking milk bad for his inflammation? He is not lactose intolerant and loves to drink milk.

 

[FruitLoop]

Hi - last summer my Hb dropped to 5 and i had 2 pints of blood overnight followed by 1 every couple of weeks till my Hb got to 9.

It kept dropping and i ended up having about 8 pints in total during September and October.

I was then swiched back to Venofer iron infusions (oral iron is not absorbed at al but also irritates my insides).

I've had about 40 of these and my Hb is now 10 - although my ferritin is low

I have active Crohns all through my small bowel and its a combination of bleeding ulcers making me lose blood and gastric transit being about 20 mniutes which means i dont absorb iron.

Its been like this for a year now and they have no idea what to do!

Im on Remicade / Infliximab along with i steroids every 8 weeks and am on and off oral steroids like a yo yo.

No help at all but wanted you to know that you are not alone!

 

[*Cari*]

Well we are getting the max dose on remicade as I type and the nurse said surgery is the next option. This sucks an I hate it!!!!!

They did additional b-12 and iron studies on his blood work today so hopefully we will get some answers on that.

 

[shamrock15]

I can really empathize with you Cari - I had this for 3 years. In that time, over 60 units of blood, some plasma and probably 30 or more venofer. For me it seemed to resolve itself about a year ago. I suspect part of it was just Crohn's being Crohn's. Part of it was likely rabeprazole (pariet - a stomach acid reducer). Part of it was probably stress related to my job and its stability. There was no single change that I think caused my body to behave. Certainly no single med did it. I did change what I was drinking - from fruit juice to lemonade to provide a slightly more acid bowel to aid in iron absorption. Milk is fine - just don't have your key iron components eaten at the same time as dairy products can reduce iron absorptivity. More than likely your husband has more than one single cause for the blood loss and iron loss. There are some remicade complications that can cause blood loss, and I imagine that is what they checked for today. Hope it all works out well, and hopefully more quickly than mine did!

 

[ThatsWhatSheSaid]

I'm sorry to hear things are so bad for you and your husband. The nurse saying surgery is the next option might not be the worst thing. I haven't had surgery myself but it seems people are able to actually get some real relief from it instead of all of the yo-yo-ing around being sick and in pain. As far as the blood loss he is having, have his clotting factors been checked? It may not make any significant difference but it is possible that if his blood is more thin that it may cause him to lose more. Also, if he is having intestinal bleeding, is he on any kind of a liquid diet or bowel rest? Even for a week could give the bowel much needed rest from doing its usual work and then it can work toward healing.

Try not to be scared of surgery though, sometimes keeping damaged intestines ends up being far more harmful by trying to work with them. Keep your spirits up.

 

[Mountaingem]

My blood count dips but never as low as your experience. Have the doctors tried Procrit to boost the red cells?

 

[afidz]

I was having a lot of problems with my blood a few years ago. To the point I almost died. Anyways my GI did a blood study and wouldn't you know it there is also a blood disorder associated with Crohn's. I'm going to try my best to spell it but be warned there isn't a lot known about it, but it would explain low blood counts and any malnutrition. Its called shystocytosis. Hope this helps good luck

 

[*Cari*]

Thanks everyone!!!

Update: last Tuesday he received his remicade. He seems to be doing a lot better. He also had blood work done. His b-12 was good(don't know what it was) his iron was 10. They were going to start iron infusions but decided to wait 2 weeks to see what he does with the iron supplements he's on. He is still on vanco, acyclovir and 60 mg steroids. His hgb was 8.1 and his hct was 25.

 

[ThatsWhatSheSaid]

So glad to hear that!!! Headed in the right direction!!