Crohn's Disease Forum » Parents of Kids with IBD » How are the parents of kids with IBD coping?

04-01-2013, 09:12 AM   #151
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QueenGothel's Avatar
Join Date: Oct 2011
Location: Michigan, USA
Fears we cannot climb become our walls. You are in full on survival mode. This mode happens to me as well... You put on your poker face taking her to the hospital, remained strong through all the poking and prodding, comforted her when the pain was unbearable. You are not failing her, you are probably very tired. When I come home from a big hospital stay, my house is a mess and for days maybe weeks I am not a mother but a nurse just doing her job. It happens. People tell me all the time at that I am a great mother and how strong I am. We do what we do because it needs to be done, we love our kids and we want them to be their best. Unfortunately sometimes we fall on the trail and forget how to dust ourselves off and this is where you are I think. These moments are when I pray the most. I don't pray because it makes sense to do so, I pray because my life doesn't make sense most of the time. Take care! You are not alone!
04-01-2013, 09:23 AM   #152
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Niks's Avatar
Join Date: Nov 2012
Location: Swindon, United Kingdom

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Marni's Mom

I think we've all been there, use your friends, family, anyone who will listen! You need to be able to take some time for yourself, even if it is a hot bubble bath with a large glass of wine.

Sending you big ((((HUGS))))

Chin up hunny, stay strong xx
Daughter 24, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteoporosis
Sacral Nerve Stimulator fitted Nov 17.

Peristeen Irrigation every day.
Self Catheterisation

Waiting for bowel stimulator!
04-01-2013, 09:36 AM   #153
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Join Date: Feb 2012
Location: Canada

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YES, I have definitely felt this way. There is nothing worse than seeing your child in pain and having no clear way to make it better. I get a sinking feeling just thinking back to that time. Nothing I did helped tremendously but an occasional run with a friend (really an excuse to go out for coffee/breakfast) and trashy tv or books were my go to activities when things were really bad. For a long while I felt like my mood was entirely dependant on how my son was feeling. If he was feeling good I was ELATED and if he was feeling bad I was DEPRESSED, the swings between the two where frequent.

you are doing the best you can!
Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
04-01-2013, 11:02 AM   #154
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Location: Minnesota

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Lately I feel like I'm just obsessing over Crohn's. My son is doing really well right now and seems to be in a pretty good state of remission. Yet... I can't stop thinking and planning for the next flare. Am I crazy??
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
04-01-2013, 11:17 AM   #155
my little penguin
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Nope not crazy
Same here every time I think I can relax
He cycles through something again
No one can explain it
Take some time for your self and older child even if its a hour this week
Ask friend family to clean or grocery shop
Just to give you the break
It's hard to ASk for help
But you need it
DS - -Crohn's -Stelara -mtx
04-01-2013, 12:41 PM   #156
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Location: Falkirk, United Kingdom

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Just wanted to send a hug. Been there! It is so difficult to watch kids in pain! Went through that for both - suppose they both got extra attention at some point last year. Just give your other kiddie lots of hugs whenever you can. They will understand. Housework always comes low on my list when kids sick. So long as my bathrooms and kitchen are disinfected/clean I am happy enough
04-01-2013, 02:36 PM   #157
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Lately I feel like I'm just obsessing over Crohn's. My son is doing really well right now and seems to be in a pretty good state of remission. Yet... I can't stop thinking and planning for the next flare. Am I crazy??
If you are then I am too!

Have a read of my and T's posts on the first page of this thread:

04-01-2013, 03:37 PM   #158
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jmckinley's Avatar
Join Date: May 2012
Location: Alabama
Not strange at all Mehita! Ryan is also at a pretty good state, yet I seem to stay on pins and needles waiting like "this won't last"!It's hard to live your life and allow Crohn's to be an occasional visitor and not take up residence in your head! Hugs to everyone!!
04-02-2013, 10:31 AM   #159
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Join Date: Nov 2012
Location: Belgrade, Montana
One day at a time is sometimes too is one hour or one minute. <3 I finally learned to give myself time to throw a pitty party, cry, yell, hit things (i actually have a punching bag), sulk...whatever it takes. I just set a limit on it. Today or this weekend. I've helped my son do this too and it seems to have helped a little with his anger, too. The fact is we are human and sometimes life sucks. I say this as someone who has incredible faith and it is usually after an hour or two of full out feeling sorry for myself that my faith comes through strongest. The truth is that we DO have reasons to hurt and be afraid and worried. I don't know if there is anything worse than seeing a child suffer. We aren't stone. WE have feelings and if we keep them in and always act invincible most of us will eventually completely come apart. If we can let ourselves be human a little more often, its seems the crash isn't as bad. My Dylan has had such a frustrating year, but is finally seeing some light. I have, unfortunately also been in a nasty flare. We learned that there are very few balls that actually have to stay in the air; most can bounce and will be there for you to pick up later...or they just aren't important. We are still living day to day, but my heart is more at peace when I let myself have my emotions. I'm very blessed to be a glass half full person at heart, so I understand that it is a gift, but generally if I give my negativity and heartache and sadness its time, I can get back to being me. I keep all of you firmly in my prayers. All my best today and every day.
dx Crohns 1995
Remicade since 2002
monthly B12inj
dx RA 2012
MTX inj. 12/2012
Vit D 2000mg/day
folic acid 2mg/day
Mom to Dylan (14)
dx Crohns 2010
Tried prednisone, prevacid, endocort, immuran
EN Nov 2011 - April 2012
Remicade 3/12-4/13, MTx jan-april 2013
Humira - starting May 2013
Folic acid 2mg/day
4000mg Vit D
1000mg calcium
04-04-2013, 02:11 PM   #160
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Join Date: Jan 2013
Location: North Central, Illinois

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Hugs to all who aren't sleeping for the thoughts that are constantly churning trying to figure out how to make your child better, to avoid the upcoming tests/meds/other unhappy scenario... Take some time to just be a family some day. Don't be afraid to take time off for things other than Crohn's related problems. This is important too. Go on a field trip with another child's class. Go out with friends or your family and see a movie. Take a date with your spouse and eat spicy, greasy foods! You need to take care of you too! Oh and one more thing. Set at least one day aside to not log onto this board. When you have some down time, it's okay to make it a nonIBD evening or moment too.
J's story:
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.

Crohn's Disease Forum » Parents of Kids with IBD » How are the parents of kids with IBD coping?
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