Extreme blood loss? Will Remicade Help?

[cgull1]

My husband was diagnosed with Crohn's in 2001 shortly after we were married, yet had fistulas before being diagnosed. He is typically okay, but when he does have flares, he has extreme blood loss. In one hospital visit he received 6 units of blood. Prednisone has worked in the past to stop the bleeding. He is currently on Entocort for abdominal pain, so the doctor does not want to give more steroids. He has flare ups with the blood loss about every 2 years.

He noticed more blood loss this last week and went to the ER after rapid pulse, fatigue, low hemoglobin levels, etc. The mention of a GI bleed got him a quick triage. He's had 8 units of blood transfused as of today. As I've read the forums, I haven't read about such extreme blood loss. Just looking for advice and other experiences with the bleeding. A colonoscopy didn't show anything (usually doesn't), but a CT scan showed issues in the intestines. The doctor talked about surgery, yet the surgeon wants more information to remove the section in question. That test needs to be done about 2 hours away and he really can't leave the hospital until the bleeding is stabilized. He received Remicade yesterday to try to stop the bleeding. Has this worked for others? Any advice or insight as to what to expect? Thanks!

 

[Jennifer]

Oh my, ya that is a lot of blood. I bleed during my flares too but never so bad where I had to be given blood. Almost had to but I was hospitalized and was forced to have gut rest for 2 weeks (no eating or drinking) and had nothing but my IV of fluids. Then they did every test for Crohn's minus the pill cam (and some tests a few times) before they found the bleeding and were able to diagnose it and treat it with medication. I was given Prednisone (50mg) and Azulfidine.

Here's an older thread about Remicade I've never taken it sorry): http://www.crohnsforum.com/showthread.php?t=14340 It would seem that for a few people it took a few days to notice a cahnge and for some to have a few infusions for them to have some luck with it.

Has he had a barium swallow with x-ray (also known as a small bowel series with barium)? That's one of the tests that really showed some damage that even I could see on the x-ray.

 

[cgull1]

Thanks for the response. He has had the barium x-ray in the past, but the GI doctor didn't seem to think it would be as accurate as they would like this time around. They're talking about the double balloon enteroscopy, I believe, but it's not done locally. The surgeon just wants to make sure he gets the correct section that is having the problems.

 

[littlemissh]

Hi, I have a similar problem with extreme bleeding where my Hb drops and I have required 2-3 units blood per week for the last 4 months. My colonoscopy also are normal though I also have several gastric and duodenal ulcers. They believe my bleeding is in the small bowel mostly.
I have been started on Humira to stop the bleeding (also on aza and pred). If this does not work (though I have noted improvement in the last 1 week - 4 weeks into humira) then I will have a double balloon endoscopy and also a specialised angiogram to localise the bleeding point/s and resect them.
Thankfully the Humira does seem to be now working and the bleeding is becoming more 'sensible'!

Cgull, does your husband have fresh blood or melaena (dark tarry stool)?

 

[cgull1]

It's the dark, tarry stool, so bleeding further up. They just took him to get the double balloon enteroscopy in Chicago via ambulance. Maybe surgery on Friday. Just need to get the bleeding to stop at this point. Another 2 units of blood today, so 10 this week. Thanks for sharing your experiences, littlemissh. Glad you are seeing improvement on Humira! Yes, you've had far too many blood transfusions!

 

[notfullyfathomed]

Oh, extreme blood loss is so scary! I've encountered this twice -- once when I was first diagnosed at 12, when I was very very ill and in the hospital on TPN. This time I did not stop bleeding on my own, and I had to be transferred to the ICU and receive clotting factors (not sure exactly what) since mine were low. The second time, I was in very good health and quickly lost a lot of blood (enough to make me pasty and anemic) over 6 hours. The docs decided I had an ulcerated area over a blood vessel, and ultimately I did end up having surgery to remove that part of my TI.

I definitely think you should ask the docs if your husband's blood has the ability to clot itself and stop the bleeding. He might need some help in that department beyond just the transfusions. You may also want to seriously consider surgery. At least in my case, the fact that I still had bleeding when I wasn't flaring pointed to a more structural problem that could only be fixed by surgery. It sounds like the remicade won't hurt, but surgery might give your husband a more consistent fix.

Good luck, I hope he feels better soon!!

 

[cgull1]

Thanks for another avenue to explore, Anna. It sounds like they might try some other drugs at the new hospital (prednisone and mercaptopurine). Each doctor wants something different. That's interesting about the ulcerated area by the blood vessel--I wonder if he's having something similar with as much blood as he's lost this week. Glad the surgery worked!

 

[littlemissh]

My docs want to try the medical route but only up to a point. I think if I hadn't had emergency surgery at the end of November and been so underweight surgery may have been considered sooner but they said I would have to have TPN etc Pre surgery as the surgery I would need is major ( whipples and partial small bowel resection).
It appears to be working for me (also on aza and Pred and enteral nutrition), so hopefully it will work for your husband.