Low output, abdominal pain - no blockage. Need advice!

Ahoy Ostomates! I really need your help! My 35-year-old, non-verbal, autistic son has had his ileostomy for 8 months ago. For the past several weeks, he has experienced low to no output, intermittent abdominal pain, followed by gushing of watery output sometimes 400 - 800 ml. We are currently in the hospital, and CT scans and an ileoscopy show he does not have a blockage. His doctors seem baffled. Have any of you ever experienced this or have any idea what might be causing it? Help, please!

I went to the ER for pain and no output like that, and CT showed I didn't have a blockage but a barrier ring and wafer was on too tight (from my old doctor) and had blocked off her flow... And have they put their finger in there or checked to see if there is a blockage just beneath the surface?

Yes, the doctor has inserted his finger several times, as well as inserted a catheter, that did produce a small amount of output. I will request a WOCN nurse to review the stoma size I have been using and how I am applying his pouch. Thanks Beth22, I really appreciate the info!

Of course.. I wish I could try and give more suggestions.. I hope he feels better and you get the answers.

Hi, if he had his ostomy longer, I would say scar tissue constricting and releasing some output. But if he isn't having much pain or only occasional pain, that's probably not it. I have Crohn's and that causes scarring and slows output, and finally a blockage, so I had resection surgery. Also, certain heavy foods cause the bowel to twist and cause a temporary blockage.

Hi for my,

So a couple things to ponder... when you say they did a CT scan, that can mean a lot of things. There are different varieties of CT, and the experience of the radiologist all comes into play. Did they do a CT with contrast? I just had a good conversation with a GI Doc about the plusses and minuses of using CT scan data to find obstructions and bowel thickening. In her opinion, it all came down to the talent of the radiologist. But she told me the new "gold standard" for imaging bowel is MR Enterography because it has no ionizing radiation, excellent soft tissue contrast, post-contrast evaluation of the bowel, and real-time cinematic imaging of bowel peristalsis. The downside is it takes longer than a CT, and some folks get claustrophobic being in the scanner for 20 minutes or so. Another thing to consider is that when they do an ileoscopy (viewing through the stoma), they don't view the entire small bowel... just what they can reach fairly easily. They don't want to perforate the bowel or things get interesting real fast. The other thing they typically do is to look into the small bowel from the other end... through the mouth and through the stomach (upper endoscopy). I assume that wasn't done. If it were me, I'd inquire about an MRE and upper endoscopy... because something isn't right in there. You have to stay on top of these medical folks... there's really no reason they can't accurately image the whole small bowel properly and determine what's going on... but it takes talent! Keep us informed with your son's progress.

;O)

Bob

Thanks w30bob for the very interesting info. Yes, he had a CT with contrast. He is also scheduled for an upper endoscopy, but not until early October. I will definitely ask about the MRE. The latest theory is that because he has no body fat, his small intestine is just sort of dangling around with nothing to hold on to and occasionally gets wrapped around his stoma. When he is in pain, he doesn't eat or drink, and his weight has dropped so low, 88 lbs, his Dr. opted for a PICC line and TPN to get his weight up as soon as possible before looking at any other invasive procedures. He has been doing better the past two days, and I pray he continues to improve. We are scheduled to leave the hospital on Tuesday and continue TPN at home, at least for 1 month. Thanks again for the info. I really appreciate it.

Thanks W30bob for the very interesting info. Yes, he had a CT with contrast. He is also scheduled for an upper endoscopy, but not until early October. I will definitely ask about the MRE. The latest theory is that because he has no body fat, his small intestine is just sort of dangling around with nothing to hold on to and occasionally gets wrapped around his stoma. When he is in pain, he doesn't eat or drink, and his weight has dropped so low, 88 lbs, his Dr. opted for a PICC line and TPN to get his weight up as soon as possible before looking at any other invasive procedures. He has been doing better the past two days, and I pray he continues to improve. We are scheduled to leave the hospital on Tuesday and continue TPN at home, at least for 1 month. Thanks again for the info. I really appreciate it.

Hi Ron in Mich,

Can you elaborate on the "certain heavy foods that cause the bowel to twist and cause a temporary blockage"?

We've been home from the hospital for two weeks, on TPN, and just experienced another blockage that apparently corrected itself after placing a hot water bottle right below his stoma and applying gentle massage. It happened shortly after he ate one of his favorites, spaghetti. Is this one of the heavy foods you are referring to?

Thanks a bunch,

ForMySon

Hi, for a heavy meal to me would be a beef stew, or a pork chop dinner, or like Thanksgiving dinner where I tend to eat too much.