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Posted 4/1/2009 9:48 PM (GMT 0)
My mom was diagnosed with Crohn's in July.  We believe she went undiagnosed for 30 years and ended up with a footlong blockage where her small intestine meets the large.  Very very long story short....she had perferated ulcers also, so after 2 emergency surgeries that removed part of her stomach, part of the small intestine and has a loop temporary ileostomy.  After 5 months in the hospital after healing from the surgeries and abdominal infection from the perforation, she came home, but has been in and out of the hospital ever since.  She is constantly battling dehydration, malnutrition and malabsorption. 

She's so sick and they want to reverse her ileostomy, but can't do that until her nutrition levels get better.  How can that happen when everything she eats goes right through her?  How do you deal with the malabsorption problem?  She's getting a PICC line to get fluides 2x week, but that won't help with the malnourishment...

Any information from those who've had similar problems would be SO appreciated.  It's heartbreaking to see how sick she is and I just know there has to be something that will work for her.  Thanks.

Posted 4/1/2009 10:34 PM (GMT 0)
Your Mother really doesn't sound stable yet.

I would strongly suggest you see her doctor and arrange for her to be in a care facility until she can take care of herself.
Posted 4/3/2009 11:37 AM (GMT 0)
ileo's do have very fast transit...what have the doc's prescribed to help her situation? There are many meds and foods that will slow transit so she'll need to get that under control...can you give us a sample of what she's eating? Some here have had problems with very fast transit and should be along to give their comments...hang in there!
Posted 4/3/2009 3:01 PM (GMT 0)
ask her dr for, i think its spelled lomotil, its like a stronger version of immodium
Posted 4/3/2009 5:08 PM (GMT 0)

She's been on Imodium, which didn't help.  She was also on a shot called Octreotide, now she's on something new that I'm sorry I can't remember the name of, as it's the newest attempt...but it's just drops she takes by mouth.  After being on that a few days, she went hours without output, which has NEVER happened.  I mean usually when she eats, while she's still eating the food is coming out...it's been that fast.  It seems now she has some fast outputs and some stays in longer.

Her appetite is strong and she eats various foods...just no raw fruits, veggies, or nuts.  I know she should eat peanut butter, rice, tapioca pudding....any other suggestions? 

She's having a procedure done today to remove a gallstone that's lodged in the duct between gallbladder and liver.  She had to be transported to a specialist hospital to have it done given that her intestines are very fragile and she's obviously been "re-routed".  Are gallstones something that are chronic problems with Crohn's?

Thank you for your responses!

Posted 4/3/2009 9:06 PM (GMT 0)
A couple of other foods to add to her list: Potatoes, ripe bananas, humus (!) which we had a discussion about this recently on this forum, pasta is also good. Is she able to eat dairy products? Cheese is pretty good too. Did they mention a probiotic for her digestive tract that she could take orally?

I've not heard of the drops for slowing transit. I'm curious to hear more about those - if you get a chance, jot the name of the drug down for us.

I can't answer much about the gallstones. I've been in remission from my CD since 1984. Maybe someone else will be able to answer that one for you.
Posted 4/3/2009 11:44 PM (GMT 0)
Needinfo4,

Back in June of 2007 I was on TPN through a Picc Line. The hospital can give her nourishment through your mom's Picc Line. Are they not doing this in the fluids they're giving her? Although my TPN took the place of me not eating through my mouth for a week or to have my stomach digest, but I still got nourishment. Just a thought.

Mary
Posted 4/4/2009 11:04 PM (GMT 0)

Yes, she is on some sort of probiotic.  I will get the name of the new drug she's on and let you know what that is.

Thank you for the food suggestions.  I will definately put them on a list for her of must-eats.  TPN was not an option for her.  Ever since her surgeries, her liver counts/function have been abnormal and they didn't want to put any more stress on her liver (which TPN would do).  They said that would be an absolute last resort in her case.  We asked about that a while ago....

It's just baffling all of the things to think about when this happens to you.  I wish all of you the absolute best in care and healing.  Having good doctors is so important.  It took us a little while to realize her doctor didn't know as much as he claimed.  Once we changed doctors, we were offered a whole new set of things to try.  So, just keep in mind if it feels that you are not getting the care you deserve, keep searching until you find a doctor you have confidence in.  I wish we would have changed her care long before this.

Thanks again, any information is so greatly appreciated....

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