stomach quit working

[deehubbard]

I have a daughter that has multiple problems that started after she graduated, but no one can give a reason why things are shutting down more or less. She started in 2003 right after graduation she kept passing out and ended up with a cardiac pacemaker.In 2004 she had her gallbladder removed and appendix removed and 2 endometreosis scopes. Then in july 2004 she developed pancreatitis, and was in the hospital 10 months off and on with constant flare ups. Feb. 2005 she had a total pancreatectomy with the auto islet cell transplant. July 2005 she developed seizures.January 2006 she was hospitalized with 11 kidney stones that they had to go in and remove. November 2006 she had a small bowel hernia that had to be repaired. Jan. 2007 she had a partial colectomy and then in May 2007 she had a complete colectomy. And just recently June 2007 she had her spleen removed. Now her stomach is not working ,  and she has a feeding tube and TPN but she is currantly in the hospital because she can not hold anything down . And she takes alot of meds. that are'nt staying down either. She now has lower left side pain and around to her back. That they dont know what is causing it . They did a ct scan. but we dont know the results yet. This all started when she was 18 years old , she is now 22. Up until she graduated she was a full speed A-B student and very active . Basketball, softball., Cheerleader. We just dont understand what is happening. She never drank or did drugs or smoked or anything like that. She was very popular and very happy. Everyone that knows her is shocked that she is going through all this.  Does anyone have any suggestions on what might be going on???   deedee

[deehubbard]

Thank you for your comment.  Yes you are right about the scar tissue. When she had her colon removed they had to cut away so much scar tissue to even get to the small intestine. And when she had her spleen removed the surgery took 5 hours because the dr. said there was so much scar tissue to cut away to get to the spleen. I know for a fact that we are more than likely going to have problems with scar tissue and the small intestine. And her dr. did mention Friday that he was going to talk to a surgeon to see if maybe she can have a laporscopic surgery to go in and look. But it was never brought up again.  We are going to ask him about it tomorrow. She is in alot of pain and she is getting 6mg of morphine every 2 hours.  We are soooo ready to get out of the hospital, but it looks like it is going to be awhile.  Thanks again , any advice you have to offer is greatly appreciated.  Thanks  deedee

[Jaybay]

My first thought (and only because it happened to me) is that with all the surgeries your daughter has had to her adomen, she may have developed adhesions on her intestines.  Scar tissue can really mess up the digestive process when it develops in the wrong place, and intestines just don't like to be messed with.  Every time the adhesions come back I'm blowing back everything I put in my stomach, and the pain is unbelievable.  To make matters worse, adhesions don't show up on tests.  They have to be discovered via surgery (preferable laparascopic so as to avoid creating even more scar tissue with an open incision) and carefully cut to release the trapped structures.

Anyway, I'm certainly no doctor, but with all the past surgeries, I think asking about adhesions would be a reasonable direction to pursue.

[deehubbard]

Thank you,  if you can spread the word , we need all the prayers we can get !   Thanks, deedee

[Annie62]

It sounds like your daughter is in good hands, then, if she is being seen at a teaching hospital and has a good and caring doctor.  I wondered if she had other signs of autonomic dysfunction, and it sounds as though she does since she failed the tilt table test twice.  I'm sorry she has such severe problems, but it does sound as if she is getting good care and they are doing whatever they can for her.  She certainly has a lot to deal with and I wish you the best.  

[deehubbard]

Thank you for your post. The reason Kristy has a pace maker is because her blood pressure would drop and her heart rate would drop and she would pass out. They did a tilt table test twice and she passed out both times. As for the stomach not emptying. They found out in a upper GI . they gave her the barium to drink and watched it go through but when she took a couple of drinks by mouth it showed that it stayed in the stomach , it did not go down at all.  That is how they diagnosed her with the stomach not emptying.She had all her procedures done in a teaching hospital. University of Minnesota .  We drive 14 hours to get there . But there is a dr. there that is amazing!  And we keep in touch and let him know how she is doing here at least 3 times a week (when she is sick) otherwise I write to him once a month or so just to let him know how she is doing.

[Annie62]

If they say her stomach doesn't empty and she vomits her food after eating, then it sounds like she has gastroparesis.  Did she have a gastric emptying scan done (the definitive test to diagnose  gastroparesis) where they scan you in nuclear medicine after you eat the egg sandwich and milk with the radioactive tracer, or are they just going by her symptoms (which sound quite severe if she needs to be on a feeding tube into her small intestine)?  

Probably the reason they haven't tested for it is because they don't know exactly what to test *for*--even if it is an autoimmune problem that is causing all of this.  It sounds like a lot of it has to do with problems with her abdominal organs, but you also mentioned her having a cardiac pacemaker.  Has she ever been tested for autonomic dysfunction?  You would probably need to go to a teaching hospital or big clinic to have this done.  I can't speak for all her other problems, and they might not even be connected, but when gastroparesis is severe it is usually a sign of autonomic dysfunction/neuropathy and sometimes it stands alone or is part of a wider problem with the autonomic nervous system (can involve sweating abnormalities, dry mouth/eyes, orthostatic intolerance--BP drops significantly after standing causing faintness and sometimes passing out, slow or rapid heart rate, urinary retention, etc.  Your daughter might not have any of these other problems, it's just that sometimes they are seen with severe gastroparesis.  

However, you did say the doctors think her GP is due to all the narcotics she is on, and hopefully that IS the case and when she gets off them her stomach will start pushing the food through again.  I have read that certain drugs can slow down stomach emptying and I hope it is the case with your daughter so she at least has one less problem to deal with.

Regarding my GP, unbelievably (and thankfully) even though it was severe on scan, I don't throw up from mine.  I have occasional nausea and even dry heaves, but never vomit.  I do have daily stomach and chest discomfort and low-grade pain, and sometimes the pain and bloating is excruciating.  I take domperidone for mine and, no, I am not on a feeding tube.  Overeating or eating certain foods makes mine worse.  I have constant pressure as though my stomach is shoved into my chest.  Sometimes I have trouble breathing after eating.  The inability to keep food down is a big problem in terms of malnutrition/anorexia for some people, and I am thankful that so far that is not an issue for me.  My GP is believed to be due to an autoimmune autonomic neuropathy (I have other neuro and non-neuro stuff that has been going on for years), but what is causing it all I still don't know.  

Maybe you should consider taking your daughter to a place like Mayo or Cleveland Clinic or another good teaching hospital with all her records to see if they can piece it all together.  

[deehubbard]

Thank you for your thoughts.   I think that is what they called it (gastroparesis). They say that her stomach doesnt empty. So when ever she eats , she throws up. And for the last couple of weeks her feeding tube makes her do the same. So they think it may be backing up into the stomach .  They dont know why she is having all these problems. I did have a ER dr. that suggested that maybe it was a autoimmune problem but I cant get them to test for it. When I mention it they just say they dont know. There has been no family history on any of this.Do you have a feeding tube ?  If so how are you handling it? Do you throw up all the time? Just asking ,  This is all new to me.  They said they think her stomach isnt working due to all the narcotics they have her on , but they said it will take 8 months to wean her down. And if it doesnt start working then , they said her option would be a gastric pacemaker.  deedee

[Annie62]

I am really sorry for what is happening to your daughter.  What do the doctor's say is the reason for all this or at least what might be a reason?   Have they given you any thoughts?  

When you say her stomach quit working I am assuming you mean she has gastroparesis.  Is the reason she had to go on a feeding tube because of her inability to keep food down?  I have severe gastroparesis (but none of the other problems you mentioned).  I have read extensively on GP and so know quite a lot about it, but I know nothing about the other problems she has had or the possible relationship to her stomach not functioning.  You really should try to get her doctors to give you their best thoughts on what is happening to her, even if they don't know for sure.  Is this possibly some kind of autoimmune process and/or dysautonomia?  Probably not, but wondered if anyone mentioned that to you.