Proctitis? UC? Crohns? extremely heavy bleeding, help!

[marmalade22]

I'm a bit fed up! I am currently diagnosed with indeterminate colitis and a little over a month ago I had a total colectomy with an end ileostomy and rectal stump. Everything with my ileostomy and upwards is fine but I'm having so many issues with my rectum/anus.

I had my colon removed because it was severely inflamed and I was losing too much blood. I also had mouth ulcers and was unable to eat and so I lost a considerable amount of weight and became severly malnourished. I was okay for about 5 days after surgery when I started getting mouth ulcers again, 2 weeks after I ended up having surgery for a perianal abscess and now 4 weeks after my colectomy I am back in hospital after being rushed in because I was suddenly losing an insane amount of blood from my rectal stump. I'm not talking a bit on the tissue! It was pouring out and I was having huge clots non stop for 6 hours, with intense pressure.

I have now had a total of 8 blood transfusions in a month ( 3 in the past 24 hours) and I have no idea what's going on as the doctors have done no tests what so ever. They have just said I have proctitis and have put me back up to 20mg pred.

Has anyone experienced this much blood loss? ( as it was pretty terrifying and I'm used to seeing a fair amount of blood) and do you think it's crohns or UC based on your experience?

 

[littlemissh]

I have massive blood loss, mine is melaena rather than fresh red blood though as it is from higher up- I was in hospital last week and had 8 units of blood and had had 4 units 2 weeks previously.
Mine is mostly from my stomach, jejunum and small bowel. I have 'phenotypically unusual crohn's'. Large blood loss though is usually however caused by UC.

It is scary when you lose that amount of blood. Humira has helped reduce the number of times I have had massive bleeding episodes but I have to stop humira every so often a s my white cell count drops too low and the bleeding recurs.
Are you on steroid suppositories as well? Did they get histology from your removed colon?

 

[marmalade22]

I have massive blood loss, mine is melaena rather than fresh red blood though as it is from higher up- I was in hospital last week and had 8 units of blood and had had 4 units 2 weeks previously.
Mine is mostly from my stomach, jejunum and small bowel. I have 'phenotypically unusual crohn's'. Large blood loss though is usually however caused by UC.

It is scary when you lose that amount of blood. Humira has helped reduce the number of times I have had massive bleeding episodes but I have to stop humira every so often a s my white cell count drops too low and the bleeding recurs.
Are you on steroid suppositories as well? Did they get histology from your removed colon?

They have currently increased my dose of prednisone to 20mg from 5mg and they are also going to give me steroid enema's once I start tapering down again, from past experience however oral steroids have never worked for me as I always end up back in hospital within a few days if they are my only treatment. I just don't want to go home just to come back in an ambulance because I have hemorrhaged again.

As for the histology results we are still waiting for that. Every biopsy I have had so far has come back indeterminate and I seem to have divided the Ibd team at my hospital as no one really knows what I have. I think we are all just hoping that these new results will come back with something more concrete! =/

 

[Cross-stitch gal]

I'm not a doctor and don't pretend to be. But, I have passed quite a bit of blood (even though probably not as much as you marmalade). I originally was diagnosed with UC and ended up in a bad flare a few years ago in which my former GI changed my diagnosis to Crohn's. But, I never got better with her and I too was taking prednisone orally constantly.

I changed doctors and that is where I was diagnosed with Ulcerative Proctitis. It's a bit scary when I pass blood from the back end, even now. But, for me that means I need to keep a close watch on my health because it's a sign that I'm starting to flare.

I have no advice, just a whole lot of support. I too hope that you can get things figured out as well. Please keep us updated on how you're doing.

 

[ronroush7]

Sending support.