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Crohn's Disease Forum » Support Forum » Vent Away » Mother who needs to vent


08-01-2015, 02:26 PM   #1
Hope345
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Mother who needs to vent

need to vent: I am a mother of two chronically ill daughters who I am trying to help in every way possible.

We have been coping and I havent been on here as much.
quick update: daughter 16, has come off last dose of prednisone: symptoms are anemia, extreme fatigue, trying to regulate bowels (she seems to hang on to it for days).

daughter, age 21. undiagnosed: extreme fatigue, GI issues: ongoing tests.

this has all been going on for 4 years now. Both girls are not in school, unable to work: but are trying there best to eat well, exercise when they can, starting to get involved in their own health issues and look things up as well as try to do what they can to improve their situation.
very few family members have been involved in our lives.
the few that are: starting to question us on everything....

I am exhausted emotionally and I am trying to maintain for my sick daughters.
If I do talk with family, I need to be able to keep it simple: just ask for support for my husband and I as we take care of our girls and major support for our daughters who are missing out on life and want to feel better and move on themselves.

I do want to encourage the type of support for our daughters that will actually be helpful and not isolating even more. People are naturally trying to fix everythng, and often make the girls feel guilty for days for not "doing" things.

This is a slow process and I feel our girls are making some progress, but as time goes on, I am never sure if they will ever be healthy again. I just want to support them, love them and try to bring some happiness to their daily lives.

We will be doing lots of things as we forward medically: colonoscopies, other meds and tests: they will continue down this path

thanks for letting me vent

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Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
08-01-2015, 02:51 PM   #2
DJW
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Join Date: Jul 2013
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My support to you and your daughters.

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Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
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Trillium Drug Program:
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Dave
08-01-2015, 04:08 PM   #3
24601
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Just wanted to send you my best wishes too. Completely understand your need to vent and the difficulty with friends and family asking questions and not understanding the situation well or that people can continue to be ill and that doctors can't always give us answers. Been there, done that

It sounds like you are doing a wonderful job of supporting your daughters. I know how hard that must be on you too.

Hoping both your daughters will be enjoying better health soon.
__________________
Stricturing jejunoileitis dx 1996 aged 17
Current treatment: stem cell transplant
Previous treatment: Humira + methotrexate
Past treatments: prednisolone, azathioprine, budesonide, pentasa, EEN (oral and NG), elimination diet, SCD, whipworms, 6mp, Remicade, anti-MAP antibiotic therapy
Surgeries: small bowel resection and strictureplasties in 2001, 2005, 2009, 2014
08-01-2015, 06:09 PM   #4
Honey
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Hi there, so sorry your girls are having a difficult time with their health issues. It takes time to get the right treatment and meds that help. We are all individuals in our response to meds and symptoms. You are a caring mum and am sure your support will help. People who are well do not always understand or empathize. Remember to encourage other interests and activities eg walking, as it is good to have other things to do. I find my Art work and Photography keeps my spirits up as I deal with frequent tests and hospital visits. I like to paint what I see : so recently was at the beach and took some photos of a fishing boat in the sunset. Let me know how you are doing. Best wishes.
08-01-2015, 10:22 PM   #5
Optimistic
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Hello Hope.

I'm sorry you and your girls are dealing with so many obstacles right now. I completely understand how this is wearing on you. I hope there are some good changes for you and for both of them very soon.

Please keep us posted. I'll be praying for strength and healing while sending every bit of positive energy your way in the meantime!
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