Reply
Honored Contributor
Posts: 10,942
Registered: ‎03-09-2010

@lavendar ....good for your mom...my niece is 40 years old, (her mom is not in the picture, she looks to me as her mother figure)....she has been dealing wtih this for 20+ years.  I just feel so bad for her, and between work, children, life, going to Cleveland Clinic is hard but I told her she needs to put herself first....but again I try not to say to much...she knows I have her back.

Respected Contributor
Posts: 2,119
Registered: ‎03-10-2010

Bravo for being her substitute mother. I have a similar relationship with my niece.

 

Work and children are two full time jobs. Let her know she's doing very well on that front for someone with a chronic illness. If there's any way she could lighten her load it could help. I know that is not always possible.

 

She can call the CCFA office and get a no. for the local office near her. She can ask for a physician to see but this isn't always the best route. The offices may only have names of volunteer physicians.

 

I found the best way is to go to a support group meeting and find out who the other people there are seeing. Even online might help.

 

 

Honored Contributor
Posts: 10,942
Registered: ‎03-09-2010

Re: Stelara....for Crohns

[ Edited ]

@lavendar ...one question..is it 'normal' or maybe should say a symptom....to have body aches and stiffness with Crohns?  She mentions those symptoms but the reading I have done, I do not recall that being mentioned.

Esteemed Contributor
Posts: 7,536
Registered: ‎03-28-2015

@Mom2Dogs wrote:

@lavendar ...one question..is it 'normal' or maybe should say a symptom....to have body aches and stiffness with Crohns?  She mentions those symptoms but the reading I have done, I do not recall that being mentioned.


Yes...My daughter  has had Crohns for 10 years and that is normal

 

I would recommend the Cleveland Clinic for her. They know what they are doing up there and people come from long distances to be treated for Crohns....I can't ell you how much they helped my daughter.

Honored Contributor
Posts: 10,942
Registered: ‎03-09-2010

@Nataliesgramma , thank you so much for the reply....I have suggested to her to go go Cleveland Clinic it is only about 3 hours from her home, it's just getting there, again thanks!

Respected Contributor
Posts: 2,119
Registered: ‎03-10-2010

Good to know about CC. There are many gastros there; find one who specializes in Crohn's.

 

Body aches, especially in the joints is seen. There are many extraintestinal symptoms. I saw a rhematologist and an opthamologist even when I was in remission. That would be an advantage of a place like the CC: she could be seen by specialists for her other problems .

 

The year after I lost my remission I had severe fatigue. This is common also.