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Our 20 year old daughter was diagnosed with Crohn’s disease in February of 2012.  She was treated felt pretty good for 4 months.  But for the past 2 months she has had a flare that we haven't been able to control.

She feels terrible, has very low energy and most importantly, her mental state is terrible.  She is depressed and lacks any motivation to do anything.  She is working a very easy job but just 15 hours a week.  It’s the only time she leaves the house.  She won’t see her friends and refuses to tell anyone about her disease.  We insisted that she start seeing a therapist.  So far she has had one visit with another to come this week.  She contacted the Crohn’s and Colitis Foundation to see if they had a support group.  She went a couple of weeks ago but no one showed up.  We have suggested that she visit with our pastor but she doesn’t want anyone to know she has Crohn’s.  She feels very alone and helpless.  She is normally a very strong person but this is really hitting her hard and we are at a loss at how to help her.   We have suggested that a little light exercise (walking or yoga) would help her mood and get her mind off the Crohn’s if only for a little while.  We also suggested that she should get out and meet some friends, volunteer at something or just change her surroundings for a while.   We know attitude is a big part of anything but she refuses to see that her attitude is not helping her to feel better.  We know that it will take a while for the medication to start working but she is very impatient. 

I guess what we are looking for is any ideas about how to help her mental state.  We have faith in her doctors and believe that given enough time we will find the right way to manage this disease but we have to find a way to make her accept this diagnosis.  Any ideas?  Thank you.

HI, My name is Sandra, my daughter Elyse was diagnosed with Crohn's on Oct 7, 2011.
At that time she was a pretty normal 19 year old girl,  attending college, hanging out with friends and trying to find her way and her independence.
Once diagnosed she became still..... very much alone, sad, depressed and very angry. 20 is such a tough age - and having Crohn's as a 20 year old female is even tougher.  Its not a pretty, its ugly and often embarrassing, but its part of her.

Its been over a year - she has been hospitalized 3 times, missed so much of school and work ( she is a nanny for some pretty amazing families), and worries all the time.

Her anger is lashed out at me, but I will take it all in and be by her side. I watch as she stays in her room, stays by herself.
Still I find myself lonely and hurt when she lashes out. My friends and family do not understand the worry, the watchful eye over everything she does.

I can only share what I did .....  I didn't  force, but offered her  time, a place for her friends to gather, information to friends so they understand.
After many month's Elyse started to paint, read and reconnect with friends. She and I both got n contact with the CCFA.  Elyse got involved with church, started volunteering at the hospital... and realized things could be worse.  The anger still creeps up and i still stand and watch her yell, and hold her when she cries.

We just got home from the surgeon's office and she is having surgery on Nov 9th. Which means a week in the hospital, and 4 - 6 weeks home recovering.
They will be removing part of her small intestines, she will have a scar...... but the pain may be less or go away.........

So I sit and steady myself - to give her the time and space she needs.

 

 Reply posted for bookreaderdeb.

As a parent, I think you are on the right track to keep encouraging your daughter to seek a change of scene / pace. Keep in mind, "babysteps". Maybe starting with a walk around the block with you or trip to the library to look up information - small journeys. My son was afraid of having an accident or not being close to a bathroom but as he progressed through babystep trips, his confidence grew.

The therapist is also a wonderful suggestion. We even found one that has training in gastro issues which was a God-send. 

Loving encouragement vs pushing is the key. It is hard to watch our children, no matter how old, suffer. We wish we could wave the magic wand and make it all go away, but we can't. She will find her way eventually. Stand by her. Our hearts are with you and your daughter.

Anthony's Mom

 Reply posted for vtcrohnsmom.

Thanks for the book idea. 

We have had quite a tough road the last 3 months.  Our daughter was admitted to the hospital for what we hoped was a short course of IV steriods.  To make a very long story short we eneded up going to the Mayo Clinic and she had her colon removed.  It was not an easy decision but it was the conclusion of several doctors.  Within a week of returning home she had another emergency surgery to repair a twisted small intestine and a small perforation.  She spent 6 weeks in 3 different hospitals.  She is home now and working on recovery.  Things are moving along but slowly.  She had to take the semester off from college and had to cancel a planned month studying Europe.  It's a alot of losses for a 20 year old to handle. 

Her attitude is a day to day thing right now but we are most concerned with her physical health.   She has lost a lot of weight and is very week.  The ilestomy also takes some getting used to but she seems to be doing ok with it.  She is grateful to be eating again even if it's a limited diet right now. 

It's amazing how fast a person can go from being a healthy, happy college student to a hospital paitent but we are hopeful that she will soon be that happy college student.  Thanks for the support.

 Reply posted for bookreaderdeb.

I just found a book called "We Still Dream Big" about teens and young adults with chronic illnesses, including Crohn's.  The kids share their perspective on a lot of topics.  Worth the read.  Might be encouraging.

Also, the CCFA camps have some counselors who also have Crohn's.  Maybe she could look into that for next summer.  Meet others like her, while helping younger kids have a true camp experience???

Best wishes to all of you.

 Reply posted for eyb31.

Thanks for your reply.  I would like to give my daughter your email address so you could talk to her.  You can email me at bookreaderdeb@comcast.net

 Reply posted for bookreaderdeb.

I hope it's OK I'm replying.  I have IBD--ulcerative colitis--and was actually hoping to get some insight from caregivers to understand what my husband is going through. This post caught my attention. I was where your daughter is now. Was diagnosed last year at 23. It's taken me a while to get to a point where I'm starting to really accept this disease and what it means for the rest of my life.

I think the best you can do for your daughter is let her know you are there for her no matter what and you love her. There will be times that nothing you say or do will help. Time heals all wounds right? It's taken me about a year to get to that point. At times it's like fighting a losing battle with no relief in sight. I've recently started blogging and it's felt good to get my feelings out through writing. If your daughter isn't interested in blogging, maybe keeping a private journal might help.

I can't imagine what it's like being a caregiver in this situation, but I hope that maybe you can get some insights from someone with IBD. It was hard for me to tell my parents everything. The more I told them, the more they worried. If you or your daughter would like someone to talk to, please let me know. I  would be happy to give you my phone number and email address. http://ucthemarathonrace.blogspot.com/

 Reply posted for bookreaderdeb.

I wish I had the answer.   Everything you and your family are doing seems right on target.   I can only begin to imagine what SHE feels like.  

Think about it.........20 yrs old, her friends are probably off from college for the summer, maybe traveling, partying, at the very least, feeling well.  This should be the time of her life.

We were in a very different boat, my daughter was 4 when she was diagnosed.   It had it's own challenges, but different.   She was 4, she had to eat what I gave her, do what I say...docs, tests, labs, friends, food, the list goes on and on.   Unfortunately, Liz doesn't remember life without meds, docs, tests, nutrition, and a "special belly". 

She needs to connect with others that have the common thread...IBD.   There is a tab on this site for young adults and believe there is a teen site too.   The sooner she can get in touch with someone the better.  Once she hears from a peer that things aren't so bad and will get better and a normal life can be achieve, she'll start feeling better about herself. 

Maybe host a Friday night movie night.   Have her invite a few friends over.   She doesn't necessarily have to go out, but don't let her withdraw from all friends entirely.  

You could even suggest that every night after the kitchen is cleaned up after dinner the two of you mother/daughter are going to take a walk.   It is good for digestion, but also good for the mind too!   You could make it seem like you feel you could use the extra exercise.  My daughter's and I have been doing it since they were babies in strollers (they're now 16 & 12).

Let me know if I can be of any help.    Good luck

Lizzies Mom