Help my very sick friend

[kat2800]

I have a great friend who is a mother of three beautiful kids. She has been thru hell and back over the last year and I need to help her. She has most recently been hospitalized since the start of November and previously has gone thru several surgeries to remove parts of her intestines that were so badly lacerated they needed to be extracted. She has been unable to eat in months and therefore in the hospital so she can get the proper care. The doctors for a while thought it might be Crohn's but after multiple tests they said it wasn't and she simply is undiagnosed and they aren't sure what to do. They changed her hospital to get her to different doctors all of which (again) have no way to explain her disease. The most recent bloodwork showed one marker for CD and they began medication as a shot in the dark. She is withering away to nothing and is depressed and sad all the time (not that I can blame her). This morning the doctors informed her she has several new lacerations on her small and lg intestines and has a fistula that has not closed but instead formed a new one with it! There must be a facility of doctors somewhere in the US that deals with mysterious, unexplained illnesses like this. Can anyone offer any direction? She has almost died on more than one occasion when she became septic from something internally that went wrong but caused he no pain until she was nearly in a coma. I need to help her!

 

[handle]

Hi kat2800,
Gosh that's a sad story. As far as I know, intestinal fistula are only caused by Crohn's disease and some types of cancer. It really sounds like Crohns from the description you gave and I'm hoping she has a top Gastroenterologist looking after her. If she can't eat I guess they have her on TPN (nutrition through an I.V) Hopefully the medication they are trying will be useful. The Mayo Clinic is supposed to be first rate.
I hope things improve soon for her, and that you are able to look after yourself too.
All the best.

 

[kat2800]

Thank you so much for the thoughtful response. I have passed the Mayo Clinic info along to her in hopes that she keeps pressing forward and keeping positive. I will update her progress her so if anyone else has thoughts we are all ears. Thanks again!

 

[Emily]

Cat, our Undiagnosed Forum monitor posted this a little while ago and I found it interesting. As soon as I read your post, I thought of it!
http://www.crohnsforum.com/showthread.php?t=28791&highlight=undiagnosed+clinic
That sounds like such a difficult situation, I'm so sorry that she and all of you supporting her have this happening. Where do you live? Maybe someone on here is in the area and can recommend a hospital or GI team for her.

 

[Jennifer]

When and what medications for Crohn's did they start/put her on? Let us know if any of them are working at all for her. Hopefully she wont give up. There are a lot of undiagnosed people on this forum but there is an answer out there for everyone. Perhaps she can have her current doctors send her chart to other doctors or get a copy of test results etc. and send them to other doctors herself (or have a friend or family member do it for her). I agree that the Mayo Clinic is a good start.

 

[David]

Welcome. I'm so sorry to hear of your friend's plight but I'm glad she has someone in her life like you.

I'm with Crabby, what meds did they put her on? And when you say, "Lacerations" do you mean "Ulcerations" or are there actual lacerations of some sort?

 

[mickey]

I am so sorry to hear of your friend's illness. She must make some aggressive changes to feel any change. Restrict her food/drink intake to only pure foods (i.e., not processed, no additives...). Pure food in will help heal her body by itself and help her in her fight. Poor diet = poor health. She can do it!