I am really struggling and reaching out for help ... our 17 year old daughter was recently diagnoised w/ Crohn's and we have not found her 'plato.' She gets better ... then has a set back ... gets better ... then has a set back.
I started crying on the way to work today because I am her mom and I am supposed to FIX this child and I can't. I can't give her a kiss to 'make the boo boo go away' any more and it is bringing me down. I am trying so hard to stay strong and positive, but when I see her having a flare and a set back - laying on the couch not able to move. My heart breaks.
I am in constant contact with our GI dr. who is awesome. We are fortunate to be in a city where some awesome specialists are ... but I guess I am just frustrated that there is no magic cure ... like a mom's kiss.
:-( Thanks for listening and if anyone can find any encouraging thoughts for me, I would appreciate it.
Reply posted for AMom.
Hi There,
I was just wondering how your daughter is doing?
I know exactly how you feel, my daughter is 15 and we are not having much luck either, diet did not work, oral medication did not work and now on Remicade but so many things are going on and the last few days and she has been sick again. For you and your daughter I hope for the best and medication works great for so many, I to am always looking for positive stories because my heart is so sad for her and I can't stand to see her so sick, anyways I hope your daughter is doing great and I would love to her how things have been going.
Reply posted for AMom.
Please don't give up. It took over a year after my son's diagnosis (at age 12) to get him feeling well again, and there were many times during that year when I wondered if things would ever be normal for him again...but now they are.
Reply posted for AMom.
I totally know how you feel. We are going through this right now and it is soooo hard to not be able to make it all better. I keep thinking after one good sleep, she will wake up and feel good. Hasn't happened yet
We go to a support group, but it is only 1x month so it is hard to get to really talk to anyone one on one. I cry all the time now. I'm sorry you are feeling the same way....and I'm sorry I don't have any words of wisdom for you!
Reply posted for AMom.
I can relate to how you feel. My son (age 13) was diagnosed with Crohn's in October after being very ill for a couple of months. I cry, and I cry some more. I feel confused about what is his new "normal" and what is a warning sign that he's spiraling downhill. Remicade seems to be helping when the Imuran didn't. I worry about his future too much...college, children, etc...
I'm looking forward to a support group that is in the works for children and families coping with Crohn's. I think it will help me to be around other parents that are going through similar issues. Is there a support group in your area? That might help.
Reply posted for AMom.
We all get frustrated at times, don't beat yourself up about it. I'm also a mom of a daughter w/CD. It was sooo hard, she was only 4 at the time. Good news, she is now 11 and doing really well (knock wood). There were times in the beginning where I would just hold all my emotions in until the end of the day and then just sob in the shower (no-one could hear) and release a ton of anxiety. Seven years later and we are very well adjusted (i'd say it took a good 9-12 mnths) to get a good grip/ understanding.
One thing I can say about IBD patients is they are all different. What works for one, doesn't necessarily work for another. A food journal really did help us in the very beginning to decipher which foods weren't working. You are in a good place in a city w/top docs. Stay the course, it will get better.
Know this forum is here to help.
Lizzies Mom
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