Ok, this post is both to vent and to ask for ideas.

Wednesday night we headed to the Memphis Tigers Basketball game. I intubated when I was there and noticed what appeared to be a good deal of blood. Having seen something like this before, I decided not to worry about it yet and just mark it off to some sort of food coloring. I came home later that night and when I intubated, more of the same. Thought to myself that I would see how tomorrow went before I started to panic. I will say that although there was no pain involved, I was feeling quite nautious during the whole game.

Thursday morning came and i intubated as normal when I woke up. Again, I noticed a toilet bowl filled with blood. Now I began to get a bit nervous but had a project I needed to get to the FDA so decided to go to work anyway. When I got to work, I was feeling some bloating so after typing up a memo, went in to intubate. Standing there intubating, I noticed that the toilet bowl was quickly filling up with a dark colored blood. I was definitely beginning to freak out by now. I started feeling very dizzy and got all clammy. I knew that this is what happens to me before I faint, so I quickly sat down on the toilet and hoped it would pass. The next thing I knew, I was laying on the floor with blood all around. One of the guys I work with was calling out "are you ok in there". So my companys first response team was called and they were quickly on the scene and trying to assess what had happened. Of course, my first concern was to dress so that my pride was mildly intact. I was still very woozy and not feeling great. They had called 911 and had wheeled me off to the hospital. Of couse, that meant being wheeled in front of all my coworkers with blood all over my shirt and pants. Going to be very embarrassing when I get back to work.

Got to the hospital and they noticed the wounds on my head. Apparently I hit the tile floor pretty hard and possibly hit the handicap bar on the way down as well. Seems I had multiple contusions on my forehead and two very large lumps. Anyway, I had to explain to the doctors there that those wounds were secondary to the GI bleeding. Of course they arent very familiar with Koch Pouches so really werent clear on what to do. The doctor decided to prescribe a CT scan of both my abdomen, head and xrays of my neck (seem to have some serious whip lash type of feeling). The CT scans didnt show anything of concern. Had some blood work done which showed I was mildly anoemic. Most of the day we were in the ER waiting for them to assign us a room. The doctor had decided he wanted to keep me overnight for observation. During this time, we tried to call Dr. Fazio. Apparently he is currently out of the country. He is supposed to get back on Monday though. They had the oncall surgeon call me and his biggest concern was the blood level. He said the CT scan wouldnt show anything and suggested we do an upper GI to rule out that it was some other sort of bleeding (that the pouch itself). I was told no food or water all day yesterday. About 8pm I intubated and noticed that it appeared clear stool and no longer blood. Talk about a relief. You could see the stress in the room dissapate as I came back out to tell my wife, her mother and her sister the news.

This morning my local GI (that I havent seen since before this last surgery) came in and said that as long as I could digest food and could get up and walk around, that he would clear me for discharge. I was ecstatic. I had breakfast this morning and scarfed down just about everything they put out. Intubated before we left and everything seemed fine. Stopped for a sandwich on the way home and decided to intubate again before eating. Wham! hit me like a ton of bricks. The toilet bowl was filled with blood again. For the life of me, I cant figure out what would cause this. Now I am terrified to eat. I has already scheduled an appointment with Fazio for this coming Thursday. My wife is being the smart one and insisting that I call the CC now to see what the on call surgeon says. To say I am nervous would be a huge understatement. Any ideas what could be causing this? No pain or nautiousness involved in any of this currently.

Mike S

Mike, I don't have any ideas, just wanted to say how sorry I am this is happening to you again; just when you were starting to see the light at the end of the tunnel. Your wife is right, a call to CC is definitely in order. There has to be someone there that can help you or get in touch with Dr. Fazio. Hope you feel better.

janna

Sounds like something in there is ulcerated and/or inflamed - causing bleeding when the stoll passes by? The fact that you were fine after not eating in the hospital would seem to indicate that whatever it is "healed" up in the absence of food some, so that you had the clear stool. Then, when you ate again, it caused more bleeding.

Probably not insight you haven't already thought of. I will pray that the doctors find what is bleeding in there, and that you will find healing quickly. I'll also pray against anxiety as it has to be disconcerting to have all that happen.

Mike, that is very scary! I'm sorry you are going through this.

Have you ever been checked for celiac's?

I think you need to be worked up for a bleeding peptic ulcer, either in the stomach or duodenum. This could even be a gastric tear (Mallory-Weiss Syndrome), but this is less likely since you were not vomiting blood. Also, checking out the rest of your small bowel would not be a bad idea. This does not sound like the typical bleeding of a small burst vessel in your pouch or a little oozing from inflammation. What you describe sounds like hemorrhage and if you don't get to the bottom of it, much worse things could happen than falling off the toilet seat. What if you were driving???

Jan

If something was ulcerated or inflamed wouldn't the blood show up at every intubation? Why would food make things bleed? Mike - have you ever been tested for celiac disease? I'm wondering if it was the wheat in the bread.....

I'm so sorry you're going through this. I have to say that if I saw a bowl full of dark red blood I'd pass right on out too. And not from loss of blood. It would be from 'sight of something that I should never ever EVER see in this lifetime or any other lifetime!'

I hope you get some answers.

kathy

(I guess I'm just following along after Jan today)

Ok, my stomach did flip-flops just reading this!!! I hope they figure out what's going on. I'm so sorry this is happening. Sometimes you just can't catch a break!

Keep us posted!

Lori

Mike I have no words of wisdom, I just wanted to add my best wishes for a speedy resolve to this latest bump in the road.

Keep us posted and take care.

Shell

Quick message (relatively speaking anyway). Its 11:30 and I am getting ready to turn in for bed. I am a bit nervous though as last night I couldnt get much sleep in the hospital. Seems every time I started to drift off, my head would tilt and I would get immense pain from my neck. Told my nurse to relay the message to my doctor so i could get some pain meds for a few nights worth. Unfortunately there must have been something lost in the translation. He called in a prescription for Ambien instead of pain meds. Falling asleep isnt the problem though, its the pain from my neck.

I dont know if I have ever been tested for Celiacs disease. Cant remember if I have anyway. Unfortunately I dont think this is it. I hadnt eaten the sandwhich when I saw the blood this afternoon and for breakfast there was eggs, bacon, corn flakes (is that a carrier of ciliacs disease?) and I did have a breakfest roll which I guess could have caused it.

The day has been a rollercoaster of emotions. Came home and intubated the first time to a bloody toilet bowl. Found out that the price to fly to Cleveland next week was going to be about $1,200 per person (not including hotel). So much for getting out of debt. I finally gave in and decided to have the sandwhich and just see what happened. Well I intubated two times over the next three hours or so. Guess what, no blood. Now I am really confused. What the heck is going on. But alas, that hope seems to have faded again. As I intubated just a bit ago, more dark colored blood. So something is definitely going on. My wife has been so stressed she has been throwing up all day. Just called my mother in CA and told her about it. She is terrified and is talking about flying out here immediately (I have talked her out of it for now). I had planned to go to work on Monday so that I could at least have a little vacation left for later in the year. May have to rethink that now. :-(

My mother brought to my attention tonight that it has now been 17 years of being sick with UC, or sick from the surgeries and 14 major surgeries. She brought it up to try and console me and let me know it was ok to be scared. It actually sort of pissed me off. Not her, but the fact that I cant seem to get healthy. Seems like all of my adult life has been a battle with this thing. Ok, just whining now. Sorry, off my soapbox now.


Mike S

Your mommy is right, you have every right to be scared. I can't believe that every time I saw you (after surgery 11? 12? or 13?) you always had a smile on your face and a positive attitude. I can relate to your puking all day - poor gal. I'll be thinking of you both and sending the biggest heavy-duty vibes.

kathy

Well, if this is a peptic ulcer, stay away from dairy. Back in the olden days, they would give cream every two hours (thinking that it would coat the stomach and be so nice). Turns out it just causes an increase in stomach acid and makes it worse. Bland foods are good. If you are taking anything that may prolong the bleeding time- stop it. This would include aspirin, ibuprofen, Alka Seltzer, Pepto Bismol, and many supplements. No alcohol. Try to eat small frequent meals, rather than three large ones.

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Jan

Oh Mikey, I am so sorry you are having to go through yet another challenge. You are the nicest guy and like Kathy said, the most positive person out there. I don't have any answers for you but want you to know that I am thinking of you and sending my best wishes for an answer to this latest twist. Give a hug to your wife for me, you both deserve a break.

I once had grand mal seizure at work and ended up passed out on the tile floor with my skirt hiked up to my waist and soaked in urine. My co-workers and the police were standing over me when I regained consciousness. It was embarrassing. However, no one remembers what I looked like, they just remember being very concerned about my well-being and I had forgotten the incident until reading yours!

Sue

Mike S,
Sorry to hear your having troubles, just wanted to let you know I'm thinking of you. Ever since I got married in 1986 at 24yrs old I have been sick with UC, temp ileo, bad functioning J pouch and now a permanent ileostomy since July 06. Though now I have no complaints and feel good.
Take care and I hope relief and quality of life comes your way soon. Don C.

I am a UC patient with pancolitis and, thankfully, currently in remission. I visit this site occasionally and found this discussion to be of interest. I see a couple of people asked about the possibility of celiac disease. My sister was recently diagnosed with CD and I have been reading quite a bit about it. Apparently gluten can be found in not only many foods, but in personal care products (toothpaste, hair gel, etc), medications and vitamins. My sister has spent a considerable amount of time calling manufacturers to find out whether or not the meds and supplements she is taking are gluten-free. Maybe you could ask to be tested for celiac disease.

I hope you get some answers soon. Best of luck to you!

Mike I have a j-pouch rather than a kock pouch but your experience does sound quite like some episodes I have had where I seem to have been literally haemorraging from my pouch. Whenever things start looking that way these days I tend to head straight for accident & emergency at my local hospital because the blood loss can be so rapid that I need monitoring - sometimes I have needed blood transfusions. In my case it is actually attributed to pouchitis (which I know is generally not really thought of as likely to cause significant bleeding - my surgeon is very knowledgable in this area though and I think he trained under Doctor Fazio). I find each time it happens that flagyl stops it pretty quickly - sometimes within just a few hours. If your doctors are scratching their heads at the moment it may well be worth asking them to put you on flagyl on the offchance the bleeding is caused by bleeding from the kock pouch. At the very least, I suspect it's unlikely to do you any harm as such.

Keep us posted anyway. I'd like to hear what's causing it when the doctors finally do get to the bottom of it.