Trying to help my Aunt who is close to death

[Fuel1212]

Hi all,

I have an aunt that has been struggling with Crohns for years. Her doctors have no knowledge in Crohns, or the treatment. She works at a healthcare establishment in Aurora IL and has only an internal HMO plan. If she continues to go to these doctors, she will be dead soon. She is almost bed ridding now.....

My question... Do any of you have any good doctors in the Aurora/Naperville Illinois areas? Preferably one that at least believes in supplements and probiotics.

Also, read through a lot of all of your posts, and was surprised to not see any mention of Low Dose Naltrexone? This drug is not pushed by mainstream western medicine doctors, but has been proven over and over again for almost all Auto Immune diseases. (MS, Crohns, etc) Have any of you been treated with this, or heard of Doctors that do?

If you would like some good articles on these studies, let me know and I would be happy to send along.

Thanks for your help!
Fuel

[Nica_6]

I have had crohn's for 10 years and been through the treatments. First supplements and probiotics are pretty standard fare for the disease. All crohnies have nutritional problems. If your aunt is in a severe flare, take her to the ER. They will make sure there is nothing really bad going on, get her hydrated and out of pain. For me hydration is the biggest thing, and sometimes the pain free rest. They will also assign her a GI doc if she is admitted, maybe she will like the one she gets.

LDN is not an approved treatment for crohns, so if your aunt has not tried the approved treatments then most doctors would not recommend LDN. LDN has not been through enough tests to know for sure if it is the miracle drug they are saying it is.  My GI and I have talked about it several times. In fact I almost went on it, aside from the fact I have joint pain and generally have to take a narcotic for it.

Your aunt needs to watch her diet, figure out what makes the symptoms worse. For me its fiber, any veggies that are not cooked to mush and sometimes milk. She needs to have a decent calorie intake along with the right nutrients. I suggest going on boost with a low residue diet ( mayo- clinic has the diet on there website) during an acute flare. She also needs to keep her stress levels low.

As far as docs she needs to see a gastro.. you can find one who deals in crohns on the ccfa website. I dont know what meds she has been on but there are quite a few options out there, many have nasty side effects but are truly effective for crohns patients. I am on Humira now. Crohn's is something that will always need meds. Even when you get into remission. I made that mistake a few times. I don't know what level your aunts disease is in but here is a quick generic lists of meds the docs should be trying on her.
Asacal or Pentasa
Prednisone
Entocort
Antibiotics
(dmards disease modifying anti rhumatic drugs) Methotrexate or Immuran
(biologics) Remicade, Humira (there are a couple more approved now)



Lastly, remember crohn's generally will not kill you. It will make you WANT to die, or feel like you are dying, but if you stay hydrated and take your meds, the flare will calm down.

Hope this helped,
Nica

[BeckyR27]

Along with conventional treatments for crohns my uncle was helping with suplements (he is a naturopath).  Most of what he gave me made me feel better but never really helped the disease.  Crohns if pretty serious and not treating it makes it worse.  I am still learning this lesson the hard way.  It *****,  I hate chemicals,  I hate that the side effects, and I hate that nobody even knows what really causes it.  I am very sorry for your aunt,  I hope she can find something that works for her.

[Fuel1212]

Bump...

Pretty active forum huh?