A Mother's Concern
Thu, April 30, 2009 11:24 AM
My 33-year-old daughter was diagnosed with Crohns disease 12 years ago. She has undergone 5 successful surgeries - all on the distal portion of the small intestine (ileum). Several inches were removed each time (with no ostomies) and moderate relief was afforded for up to 2 years.
The disease keeps coming back, however, and despite the support of family and medical staff, my daughter is becoming increasingly discouraged and withdrawn, spending much of her time alone and at home. She has not worked outside the home for 3 years. She has two sons, 5 and 2 years old, who since her last surgery (7/08), spend their days at a home daycare. My daughter is stressed and wearing down. This is a family disease.
I understand the limitations with what I can do for my daughter and that fretting serves no purpose. . . . but am I missing anything? I ask this not with great expectations but rather to know that I have done and offered to my daughter all that I can. I know the rest is up to her. Any thoughts?
momboJoined Apr 30, 2009
Fri, May 29, 2009 9:33 PM
Reply posted for Mombo.
As a mother, I also find comfort in mothering and doing the most I can. My daughter is now a teenager and I always wonder how in the world a mom with Crohns makes it through the day. I think support groups are helpful -- my daughter finds the ease of facebook very helpful. For your daughter, she doesn't have to wait for a meeting, drive, find babysitters, etc. If she is sad at 2am -- someone in Australia is probably up! For one more thing to do? My daughter has been on about every drug they've made. She has never been well since 6th grade. But... we did try the Specific Carbohydrate Diet beginning 2 and 1/2 years ago. It has given her the greatest health and she is only on Lialda now with her doctor planning on dropping that in July. The diet has also postponed her scheduled surgery for over 2.5 years now. I don't know if your daughter would even want to try it or perhaps she has tried it. SCD facebook is younger people and www.breakingtheviciouscycle.info. Mike McCready of Pearl Jam, the CCFA spokesperson a couple years ago is how we heard of it.
Joined Nov 10, 2008
Fri, May 01, 2009 7:18 PM
Reply posted for Mombo.
Mombo - Depression and chronic illnesses such as Crohn's Disease often go hand in hand. It sounds to me as though you are being as supportive a caregiver as one could expect you to be. I am impressed with the calm you show in your written request for ideas. That is exactly what you will need to continue supporting your daughter. I would suggest the following: (1) Be sure that her doctor is well aware of her current condition; (2) Check with your local hospital to see if there is a Crohn's support group in your area; (3) Search for a qualified therapist who has had experience working with chronically ill patients; and (4) Begin to educate your grandchildren about why your daughter is so low. I believe there are several children's books out there that help kids understand the effects of family illnesses, though I can't remember just where I have seen them. (Anybody out there reading this know where to find them?! Please respond to Mombo!)
At various times over my 45 years managing this disease, I have visited a therapist as well as used mental health drugs such as Lexapro. I've always refer to it as needing a "tune up" partly due to the long-term stress that his disease can cause. Please know, though, that your support and that of the rest of her family and medical staff WILL get her through this difficult time. Also know that she can have a very good life despite living with Crohn's! There a quite a few of us on this community board who can attest to that! Best to you and your family. - Bob
Joined Nov 23, 2008
Related Topics
Trying to support my husb...
jessersJoined Mar 1, 2022
Hi,
My husband is 46 and was diagnosed in 2019 ....
read more
Legal system
Kimdanon1Joined Apr 20, 2024
My son has Crohn's and is currently in jail. T....
read more