Hi everyone, I have bleeding that my doctors are unable to find a cause for, and I'm hoping you might have some insight you can share with me.
I have had a j-pouch since 2015, which otherwise functions quite well. I was originally diagnosed with UC, but that diagnosis was later changed to Crohn's due to this bleeding. The bleeding has been going on for 3 years now. I have had many scopes and a couple of MRIs in that time, but they cannot see where the bleeding is coming from. Scopes show I have minimal inflammation and MRIs show above my pouch is okay. The problem area seems to be just beyond to top of my pouch where it is attached to the small intestine and I have 3 consecutive strictures in this area. The most problematic of these strictures has been stretched multiple times. With the last scope it seems to have stayed open at 12mm. There is one doctor who has been able to do the stretching procedure and it takes him an hour to even navigate into position (two other doctors tried and couldn't find the way up into my small intestine, they were unable to even find how my bowel continued, I think I have a lot of blind alleys and things). In any case I am pretty sure this area is the problem but with the scope the doctor can't seem to get beyond the last stricture to view what's happening and with the MRI this area "wasn't well visualized" so I really don't know why I am bleeding so much.
The bleeding is often very heavy and the only way I survive is from blood transfusions and iron infusions. The blood is usually bright red, but can be a darker burgundy. I blend most of my food so that if the strictures are causing problems it can get through, but I still bleed (though I think it's less blood than if I ate a normal diet but it's been so long I'm not really sure). I bleed much less or not at all if I live on only Boost/Ensure (which I often have for months at a time) but I don't think that's a long term solution.
I was on Entyvio and now Stelara. I don't have much/any visible inflammation in my bowel, but the heavy bleeding continues. Steroids didn't slow it either (and they always helped me with UC) so I think this is likely a mechanical issue and not an inflammation issue. But I don't know. Surgeon wants to take out my j-pouch and give me a permanent stoma, but I am not quite ready for that given that my j-pouch actually works really well and we don't even know the cause of the bleeding. Though I am considering a stoma because I am so tired of this; but for now I am limping along with iron infusions.
Look forward to any advice you have.
Thank you,
Maria
