Haven't been on the site for awhile but I'm feeling a little desperate so I thought I might ask for some insight. I had a big GI Hemorrhage last week and spent 5 days in the ICU and needed 5 units of blood. The doc's did 2 upper GI's, 2 lower GI's, a single balloon enteroscopy (couldn't get through 100 cm of small intestine because of too much scarring) and a tagged red blood cell nuclear scan(?). They found a 1 cm ulcer in j-pouch during last scope on the anastomosis that they didn't see on the previous two so they don't think it was the source of the bleed, they also found one small vascular malformation in my small intestine that was cautorized, but doc felt was too small to cause hemorrhage. I've had several hemorrhages since my j-pouch was formed 9 years ago and many transfusions, this by far was the worst. I lost consciousness and went into shock, scared my poor husband to death. I'm soooo frustrated that I still don't know the cause of this. My problem is now.....I was released from the hospital on Friday (talked my way out), and I haven't been able to eat at all. My stomach cramps as soon as I put anything into it and if it's not liquid it will not go through. I'm still in a lot of abdominal pain and doubled over when I try to eat, even Boost or Ensure. I'm a little worried about getting dehydrated again because liquid diarrhea is all that's coming through. Does this sound normal for all of the scoping's my intestines have gone through? Or does it sound like the hemorrhage was possibly caused by an underlying obstruction I may have been having? BTW In hospital I passed pineapple I had eaten 3 days earlier (even after two bowel preps). I would really appreciate any help and suggestions on how to stay hydrated.
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Hi Kareen,
Ok, this does not sound good at all...I don't have any magical solutions or cures but a few basic ideas to help you out...I just discovered that Special K has these little diet tubes of powder that you pour into a water bottle and drink...They are vits and protiens and go in as clear fluids...you could try that insead of boost...it is 'lighter' on the system...I love 'diet' food when I am sick because it is usually high in protien and low in bulk...protien bars do well too and so do these sports capsules full of vitamins and trace minerals......you need to be able to kick up your iron levels to compensate and slow down your body a bit...there are these algee based bulkers for (here we go again) dieters that 'fill up' the tummy before meals so you don't eat too much...in our case it works as a stool bulker...it thickens things up and the algee is full of trace minerals too. You might also want to try eating jello again...couldn't hurt.
I wish I knew what to do about the bleeding but I don't..That is the scary part...but if it has stopped then you just need to rebuild your energy and strength so that is going to require your being able to eat or drink...try really cold things like popscikles, sherbert, iced drinks..for some reason that always went down better than hot or warm stuff for me...
Also, start taking 1/2hr naps regularly, your body heals itself while asleep so you will really need the rest right now.
Sharon
Ok, this does not sound good at all...I don't have any magical solutions or cures but a few basic ideas to help you out...I just discovered that Special K has these little diet tubes of powder that you pour into a water bottle and drink...They are vits and protiens and go in as clear fluids...you could try that insead of boost...it is 'lighter' on the system...I love 'diet' food when I am sick because it is usually high in protien and low in bulk...protien bars do well too and so do these sports capsules full of vitamins and trace minerals......you need to be able to kick up your iron levels to compensate and slow down your body a bit...there are these algee based bulkers for (here we go again) dieters that 'fill up' the tummy before meals so you don't eat too much...in our case it works as a stool bulker...it thickens things up and the algee is full of trace minerals too. You might also want to try eating jello again...couldn't hurt.
I wish I knew what to do about the bleeding but I don't..That is the scary part...but if it has stopped then you just need to rebuild your energy and strength so that is going to require your being able to eat or drink...try really cold things like popscikles, sherbert, iced drinks..for some reason that always went down better than hot or warm stuff for me...
Also, start taking 1/2hr naps regularly, your body heals itself while asleep so you will really need the rest right now.
Sharon
Thanks Sharon, I will try the Special K supplement, I didn't know about that. I'm afraid of anything that "bulks up" because I get really bad cramping and then I can't go at all until I push a lot of fluid. Then I have massive watery diarrhea. I'm eating Boost, a little yogurt, chicken broth, tea, some pudding, a little ice-cream. Maybe too much dairy? I'm down to 117 pounds and I'm 5'8", I think I'm finally getting some calories with the food choices I'm making. My husband wants me back on TPN, that would be torture to me! A friend of mine said papaya juice helped with gut inflammation, I'll give this a try. I'm a fairly high energy person and I'm feeling pretty week, I get exhausted really easy. I think it's because of my hydration level, I get my HgB re-checked on Friday. I just wish my gut would start working Do you think it's from all the scopes and bowel preps last week or does it sound like a partial obstruction?
No, not sounding normal at all. Even with the hemorrhaging, you should still be able to eat once the bleeding has stopped. Of course, anxiety can play big in these things, so don't underestimate it.
I would think the vascular malformation and/or ulcer would be the most likely culprit, but since they were not able to visualize the source due to not being able to see the entire small bowel, it is sort of up in the air. I imagine they have been entertaining a Crohn's diagnosis, but no hard evidence yet. The scarring throughout that prevents endoscopy could be due to Crohn's, or just surgery. One thing that comes to mind that you have not said they ruled out is a Mekel's diverticulum. This is basically a congenital defect where there is stomach tissue in the intestine that produces acid and bleeding. Hemorrhage can be severe. But, I would think they would have been able to find it through scans or something. It is a long shot, since it typically causes problems in childhood. http://en.wikipedia.org/wiki/Meckel%27s_diverticulum
I am hoping it was the malformation that was cauterized (even if the doc thought it was not big enough to cause such serious bleeding).
To stave off dehydration, sip small amounts throughout the day. Try to find a supplement that is palatable for you and don't force yourself to consume anything that makes you nauseated. Good luck.
Jan
I would think the vascular malformation and/or ulcer would be the most likely culprit, but since they were not able to visualize the source due to not being able to see the entire small bowel, it is sort of up in the air. I imagine they have been entertaining a Crohn's diagnosis, but no hard evidence yet. The scarring throughout that prevents endoscopy could be due to Crohn's, or just surgery. One thing that comes to mind that you have not said they ruled out is a Mekel's diverticulum. This is basically a congenital defect where there is stomach tissue in the intestine that produces acid and bleeding. Hemorrhage can be severe. But, I would think they would have been able to find it through scans or something. It is a long shot, since it typically causes problems in childhood. http://en.wikipedia.org/wiki/Meckel%27s_diverticulum
I am hoping it was the malformation that was cauterized (even if the doc thought it was not big enough to cause such serious bleeding).
To stave off dehydration, sip small amounts throughout the day. Try to find a supplement that is palatable for you and don't force yourself to consume anything that makes you nauseated. Good luck.
Jan
Thanks Jan, I had a scan for a Meckel's diverticulum years ago due to these hemorrhages. It was negative. Apparently my small bowel had a lot of scarring, the GI felt it was from my bowel resection surgery. Is there another way to get a Crohn's diagnosis other than seeing in that 100 cm of small bowel? My old GI felt I did have Crohn's, the new guy is not so sure. I'm overwhelmed and just tired of this. I have been diagnosed with Lupus as well. I have a lot of joint pain (especially back) and migraines which were flaring prior to this episode. I can't help but to think it was all related. I've been getting injections in my back and was due for a bone scan on my lumbar spine and sacroiliac but had to cancel due to being in the hospital.
For meds I take 10mg prednisone daily, plaquenil, topamax, tramadol, hormones for ovarian failure due to lupus. I take fioriset or hydrocodone if the migraines are terrible.