Community Forum

Our 15 year old has been in remission for a year. The year prior was a terrible year. She had 3 emergency surgeries, multiple hospitalizations, an ostomy, and a whole list of drugs. She wasnt living her life at all that year.In the past 2 weeks she has suddenly lost weight, lost her energy and her appetite, but she claims shes fine. Dad noticed that Monday night she was in and out of the bathroom a lot. Last night her best friend couldnt get ahold of her, panicked and blew her in. She said that out daughter thinks shes having a flare that shes been in a lot of pain for at least a week and suffering from heartburn. She said our daughter told her she was going to ask us to take her to get checked out. That she skipped practice the last 2 nights because her pain was so bad. (Our daughter told us it was canceled) Our daughter is still denying that anything is wrong. After pleading with her and trying to explain that taking care of things early may avoid a repeat of her last flare and getting nowhere I called her GI and explained what was going on. He thinks she might have CDiff or be in a flare and wants a stool sample. Our daughter refused to give the sample saying nothing is going on. After I told her that if nothing is going on then sample will show that. She said she wont do it! I told her she was going to or she would be grounded that I love her and understand her frustration but I cant just sit back and let her die.I honestly dont know how to handle this though. This is not the first time she has refused to cooperate with treatment. I feel like punishing her will only make her hide it even more, but at the same time I cant ignore that shes ill and let her get worse or even die. Shes an easy going kid when shes well and can be reasoned with/ talked to, but a very angry stubborn kid when shes not. Any advice would be much appreciated.

Reply posted for FrankGambrell.

I’m not familier with this, but would a medigap insurance policy cover a 16 yr old?  Might be better to look into an AFLAC supplemental hospitalization plan but she might not be eligible. 

Reply posted for charbs.

I’m sorry, I misread your post and didn’t realize all your daughter had been thru already.  I can’t imagine how traumatic an osteomy would be for a girl her age. It was traumatic for me getting one at 46.  Mine was only for three months.  .

Reply posted for IBDMom13s.

That is a really frustrating difficult situation she has put you in.  The fact that she lies about her situation and refuses treatment puts you in a very tough spot. But bear in mind, it’s not cancer or some other fatal disease. You can get by for a while just doing nothing.  When the pain and diarrhea become too much, she’ll Seek your help. C Dif is very contagious  so make sure she washes her hands constantly, and disinfect surfaces. I can’t imagaine her reaction to getting a colonoscopy.  You might give her some literature on the disease, and treatments, including colostomies, stomas and colostomy bags and j pouches.

Reply posted for IBDMom13s.

I’m speaking from the point of view of someone diagnosed with Crohns when 19-20y/o (and I’m now 39) so it may not be a perfect fit for your situation but perhaps some of this may be relevant...
-I’ve certainly had times where I just wanted to pretend the Crohns isn’t there, and to be able to just feel like my peers, living life normally. It SUCKS when I couldn’t have this (at least temporarily, if I was in a flare) and sometimes it was really hard to admit it to myself.  The emotional impacts could be so strong, with grief, worry, and feelings of hopelessness at times overwhelming me.
-my parents have been a source of support through that time. Sometimes they could say things that made me feel worse, but luckily I could tell them (“it doesn’t help when you tell me..., all I’m needing is for you to listen to me right now”).  The messages that seemed to hurt most were if I felt I was being blamed. The bottom line from my perspective is that having IBD is unfair, and painful.  A compassionate approach has been most helpful to me, helping me feel less alone in the emotional impacts of it.  Having that supportive base can then help thaw the resistance, and allow more willingness to be with and acknowledge what’s happening.
if I were you I may ask your daughter what she would find helpful from you.  Perhaps expect an initial “to leave me alone!” response, but have patience, let her know to think about it, that you are there for her.  During a flare-up my own mum would offer to make certain (low fibre) meals, buy me certain (low fibre) food items if she went to the store, and just generally was experienced as approachable when I was ready/needing to talk.
Best wishes to your daughter and the family x