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I am new to this site and struggling to navigate.  My daughter, 19, has been hospitalized 3 times this summer with complications from UC which came on fast and furious.  After a diagnosis less than a year ago, she already has pan colitis and surgery is being promoted as our best option during our current hospitalization (at Mayo in Phoenix).  

I am feeling completely overwhelmed.  I am sure there must be a link on this site to connect with other parents feeling this way, but I haven't found it.  All of the talk of biologics, surgery, the multiple hospital stays and just seeing my daughter in such pain and medical need have me reeling.  I am a mess and would love to talk to someone who can relate.  

Any guidance, support, links or advice welcome.

Thanks!
Carol

So sorry to hear about your child going through this. I too am a mess and my child is an adult at 20 y/o, but they never stop being your kids.  My son started remicade 2 weeks ago and has 2 doses in. He thinks he is starting to feel better, next treatment is 4 weeks. He has exhausted other options. I have another son who is being worked up for Crohns, plus a dog that was diagnosed with crohns yesterday!  It seems as human beings our digestive tracts are trying to tell us something about our current way of life, wish I knew what it was that is causing this huge uptick in digestive health problems. We are here for you for support in any way we can 

 Reply posted for chrissery.

Hi my 10 yr old son was just diagnosed I. August with Crohn's disease. I am a mess. He has received his first treatment Of remicade last week and he goes for his second one next week. I'm having a hard time accepting this diagnosis. I'm trying to stay strong. He definitely has been experiencing joint pain, sometimes excruciating. He just started school last week and today he is home because he had such a bad headache and wasn't that hungry to eat breakfast. He has been sleeping on and off for a few hours. I'm not sure what's wrong. I really need some support from other ppl in my situation

 Reply posted for slmuc2016.

I will also add, my son is also now being tested. He is, at the same age his sister did, starting to have all the same symptoms. Knowing what we know now, we are hoping that he can get on a med that can control it so he doesn't end up at the same point she did. My daughter has had what we lovingly call the "Barbie Butt" surgery where they removed her entire large intestine, rectum, and sphincter. She has a permanent ileostomy now and is glad for it. When they finally removed her intestine, it looked like black ground hamburger meat. Very diseased. Again, I am willing to chat if you want someone to listen. We've been through it all. Lost jobs, lost independence, .. If I can advise any parent, it's get a support group of understanding people. You'll need them. 

 Reply posted for mamazim.

I have a 28 year old daughter who had to move home with me because of UC. It's a journey to say the least and I'm sure it's not the same for everyone. It's stressful. You worry about your child. We are going on year 2 of the worst so far. Once we started seeing specialists, we started to realize she's had minor symptoms of UC for years but no one put all the pieces together. Her pregnancy resulted in a major flare and she's bee struggling ever since. She has UC with  arthritis and now possibly thyroid complications. I too got on this site hoping to find support or answers or SOMEONE who could listen who understood what it's like to be a full-time mom again as well as a full-time caregiver to two and try to hold a job. I've done some searching but can't seem to find any support groups locally. All the caregiver support is for people dealing with elderly parents. Frankly, I feel like there's a new career for me in all of this. I sit in my house at night and wonder, "I can't be the only parent who is going through this? What do parents who have NO help do? How are they managing?" I know how much I struggle to keep it all together and I occasionally have family help. Even with that, most days I'm at my wits end trying to juggle everything. Any tips are appreciated. I'm willing to share ANYTHING that might help others. My daughter is very honest and open with everyone about what she's going through. 

 Reply posted for mamazim.

Hello, I am a parent of a 20 year old with crohns, diagnosed at age 14. He had surgery in 2014 to remove 2 ft of his terminal illeum and is currently taking Remicade. I am on this site for support as a parent of a child with crohns, but there are also support groups in most cities, towns.  I understand about you feeling like you are reeling: i still feel this way even after  6 years of  parenting a child with crohns, esp with flares. My son is currently going thru a flare- he lives 1.5 hours away in college, and happily has a very supportive girlfriend.  You can post anytime: I have recently started checking posts again on a regular basis, so would be happy to chat with you! Chris