Can not wrap my head around this.

Okay, I know I have posted this before, but there must be someone out there who has the same thing and can share.

Since last surgery 2007, been having a blood loss problem. Maroon stool, tightness on right side. Numerous iron shots, iron infusions, and blood transfusions. But for the most part I feel ok, no crazy CD pain, but the anemia makes me depressed, can't do stairs, very winded, even blow drying my hair becomes tiresome, waking up in the morning is so hard. I mean sometimes I have pain all day and then the next day is when I see the maroon stool. But my hemoglobin will NOT stay up. My iron stores get depleted to almost nothing. The hemotologist has checked all my blood work to rule out a other cause, but there is nothing. Colonoscopy shows nothing.

Now I am awaiting a surgery date because all my doctors throw up their hands and don't know what to do with me. I can't help but think I am having a major operation to fix a small leak and it is driving me insane. For all my other surgeries I was obstructing, so there was of course a valid reason for a major surgery.

I keep having mental arguments with myself and I think I am driving myself crazy, not to mention everyone around me.

(((hugs))) It would seem you don't have much other option. UNLESS, POSSIBLY, you are near somewhere that does/can do the double balloon endoscopy. I understand that they can now correct some of this w/the DBE, take biopsies, etc. At the least they can "mark" the area on the small intestine so they KNOW where to find the area via laparoscopic surgery. Frankly, I DON'T know whether they could correct your issue if they found it via the DBE so it hardly seems worth it - but - it wouldn't hurt to investigate it if there is a facility w/in reasonable distance that does these newer DBEs.

I think that answers your question doesn't it. Your quality of life is seriously affected by this. While it isn't an obstruction and therefore a dire emergency in your eyes, you are not living your life. Once you get over the initial few weeks of recovery and start to feel better you will wonder why you waited so long and put your life on hold. I had 6 abdominal surgeries in 10 years and it stunk to recover from each one, but I did it. I just had to have my 4th resection due to adhesions. Hopefully I will be out of the operating room for a good long time. And hopefully you will be too!

Thanks!