2 Thursdays ago, I had severe pain like I never had before, high up right under my sternum and I hadn't had a BM for about 6 hrs. I thought it was a blockage when I started dry heaving and throwing up a little clear stuff, so I went to the ER. When I got there I started passing large amounts of dark red foul smelling blood.
They gave me dilaudid, IV fluids nausea meds and Leviqin. It took them 18 hrs to admit me due to shortage of beds.
We contacted my Gastro before going to the ER and he called ahead and told them I was coming. Then he didn't end up seeing me until 5:30pm the next day.
The hospital here is very small compared to where I had my surgery at Cedars Sinai.
(My step one was in Oct, step 2 in Dec.)
Things had been going pretty well, although I have been paranoid of a blockage.
So anyways, they took x-rays, CAT scan, did upper GI scope and scoped my pouch, did a nuclear radioactive scan and everything was totally normal. They couldn't find where the blood was coming from, because it had stopped or was minimal by the time they were doing all these tests.
My surgeon was consulted and said they were doing all the right things. He has no idea what happened and where the blood was coming from either.
I was released last Monday night and I'm going for a follow up with my GI today. My 3 month check up with my surgeon is March 7th.
The thing is, back in July, before removing my colon I had this same severe bleeding going all day and I ended up passing out from blood loss. They transfused me and couldn't find the source of bleeding. They chalked it up to perhaps a blood vessel was scraped or something.
I did a bunch of research and decided to have the surgery so this didn't happen again (and to cure my UC). Well now I have no colon, and it happened again!
Obviously this blood wasn't coming from my colon like we thought.
So, now I'm back home, taking iron to build my hemoglobin back up. Feeling tired, fatigued, but the blockage has resolved. Now I'm just wondering if/when this is going to happen again. Mentally/emotionally stressed about another blockage and/or bleeding episode.

Does anyone have any advice or thoughts about this?

Thanks,

Jacki

Jackie....

Unfortunately, my only thought is "that really sucks." What a weird thing to have happen. Hope someone has some insight for you.
Take care

My first thought was hiatal hernia that telscoped up and then let go before tests.

I would suspect that you had an ulcer somewhere that caused a brisk bleed and this was between the areas they could visualize by scope. The only way to follow up further would be by capsule endoscopy. It is possible you have Crohn's.

Jan

Jan,
I had the capsule endoscopy before my surgery and everything looked totally normal. And I hope it's not possible I have Crohn's! I would not be a happy camper if I had the surgery and found out it was that!
I have had UC for 15 years in half of my colon. With all the testing through the years, I've never been diagnosed with Crohn's. I saw my colon after it was removed and half of it was normal, the other half was smooth with all the scar tissue.
I see my surgeon for my 3 month pouch check on March 7th. I will discuss with him more. He just says hopefully it won't happen again, which is no help!
My Gastro didn't think it was Crohn's, he just thinks it was a scraped blood vessel or something.
But it's weird how both times, it stopped after getting fluids and antibiotics.

Dear Jacky,

it is really frustrating when there isn't found a real diagnosis. I suggest that they could have overlooked the bleeding cause when doing the endoscopy, simply because the bleeding stopped in the meanwhile. Your story of vomiting first, before vomiting blood sounds to me like Mallory-Weiss syndrome. Please don't panic, it is a relatively mild disorder caused by a mucosal tear in the esophagus as a result of forceful vomiting or retching:
see for example this wikipedia-link: http://en.wikipedia.org/wiki/Mallory-Weiss_syndrome

Succes at your consultation next week with your surgeon!
Greetings, Roger