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How low does your Hemaglobin have to go before blood transfusion?

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Ulcerative Colitis
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Posted 1/8/2019 8:29 PM (GMT 0)
My 56 year-old husband was recently diagnosed with pancolitis after a year and a half of symptoms. His last colonoscopy in December showed severe areas in his colon but no cancer. Previously, he was on methotrexate and prednisone, then on mesalamine and mesalamine enemas. Had to stop mesalamine when his tongue and throat swelled up (per his ICU Dr.). He is now in a study group and receiving monthly injections of either a placebo or some new immunologic. He is now bleeding 15-20 bowel movements in 24 hours. Up 4-6 times per night and trying to hold down a job he loves while exhausted. Last week his hemoglobin was 7.1 mg/dl and his gastroenterologist gave him an iron supplement via IV. This week it went up to 7.8 and his Dr. wants him to get another lab test on Monday (without another iron supplement). Not even a blood transfusion. My question - to anyone out there who cares to share - how do you live and work like that - when you are exhausted and all you do when you are home is sleep? How do you live with this disease for years and years only to find the only relief is by having your colon removed? (Sorry - I had to vent)
Posted 1/8/2019 8:54 PM (GMT 0)
15+ years ago my primary doc put me in the hospital to get transfusion when my blood count was 7 point something. He was pretty upset when he called me (after getting my blood test) and adamant about getting it done asap. I didn't know that was what causing my fatigue but after getting 2 pints my energy was wow.

I wasn't offered iron infusion but your hub's is a good improvement in a short time. I think my transfusion put me over 8, still low but a big improvement.

My opinion is if your husband is feeling fatigue and not improved with iron then ask his doc "why not a transfusion?". I never had/needed another transfusion after that one time even though my bleeding wasn't solved for several years.

Not all doctors follow the same protocol but helps to ask why they aren't doing something you think they should.
I just suggested something to my hub because his doc did not suggest it. It led to a huge improvement for him (not UC related). Why didn't his doc suggest it? Wasn't something they had experience with, when he went to a different practice who did he had improvement immediately.
Posted 1/8/2019 9:39 PM (GMT 0)
My hemoglobin was down to 7 when they gave me a blood transfusion and and iron transfusion in October. I was barely getting through the day at that point and had taken a week off work because I was getting so many tests done to try to figure out what was wrong (didn't know it was the hemoglobin until I almost passed out during a test at the hospital!). I was out of breath just walking to my car. After the transfusions I felt better -- hemo was over 9, but by December I was feeling bad again and went to a hematologist for another iron infusion. This one was a bigger one -- took 3 hours! I didn't start feeling better until last week and it feels like it's wearing off already. I'm not bleeding as much now so hopefully I can get stabilized soon.

Good luck to you hubby!
Posted 1/8/2019 9:59 PM (GMT 0)
I can’t speak to the transfusion — lowest I got was 13-something; we did 3 iron infusions in 3 weeks.

But to your last question: knowing that I can have my colon removed if nothing else gives me my life back is often the only thing that keeps me going. I can keep trying new meds and be just a little more patient because, while I would prefer to keep it, I know there’s a nuclear option.
Posted 1/8/2019 11:49 PM (GMT 0)
Did he try Remicade or any other biologic before going on this trial that he's on? You said he was recently diagnosed so it seems awfully fast to burn through meds that already have established track records of helping many people.
Posted 1/9/2019 2:54 AM (GMT 0)
They did not give me blood in the hospital until I dipped below 7.0 which I believe is the standard pretty much everywhere.
Posted 1/9/2019 12:44 PM (GMT 0)
I had 3 blood transfusions and I know for 2 of them I was below 7. I think below 8 they start to consider it but below 7 is really when they OK it for sure.

Willpower is how you make it through when you're that exhausted. I fell asleep on my keyboard once mid-email until my boss told me to go home and take the rest of the day off. Good news is I did have surgery and life has improved a lot.
Posted 1/9/2019 7:47 PM (GMT 0)
Thank you all who responded! Now I feel we have some options. We see his GI doctor next week and will bring up other medication options. If we don't like what we hear, we can see a hematologist. Patience is still a lesson I have to learn...
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