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


 
02-12-2013, 03:50 PM   #31
Jenn
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Great idea! It's a roller coaster....

Frustrating when you cannot be in control to help your child suffer less. stabs to the heart...

But then such relief when they are doing well. And fear about how long it will last...

It took me a good couple years to get to acceptance, but it's still not easy. We get by day to day.

I mostly have it together, but things will tip you off the cliff again. I was managing Alex having a bout of flu last week and a trip to the ER at 4am for fever and asthma. But then I totally lost it last weekend when we had a local 6 hour power outage. Made me realize that maybe I wasn't really coping well at all.

My escape is video games. seriously addicted!
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Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (15mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
02-13-2013, 06:11 AM   #32
Marni's mom
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WOW! I just checked back to see the responses to my question, but now I can't read them through the tears that I can't seem to control. I wish I could invite you ALL to my house where I'd serve you margaritas, antidepressants and lots of hugs! LOL.
It's 5am, and I'm going to try to get some sleep now that Marni has FINALLY fallen asleep. It's been a bad night for her. I'm glad I don't have to be at work until the afternoon so I can catch some sleep. I guess no school for Marni again "tomorrow" (later today). Sigh.
You are all AMAZING parents. I'm in GOOD COMPANY, thank you.

Last edited by Marni's mom; 02-13-2013 at 06:43 AM.
02-13-2013, 11:10 AM   #33
CarolinAlaska
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I'm so sorry Marni had a bad night. I hope you both get good sleep and wake up refreshed.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
02-13-2013, 11:28 PM   #34
Brian'sMom
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I feel often that crohn's is my life. I used to pray for a cure...lately I just pray for crohn's to take a back seat. Its a disease that seems to NEVER LET GO!! My son owns it and he also knows he can completely lean on me. But the last year I think my husband has kinda checked out. He seems to listen with one ear...I think its his coping. I'm lucky to have such a great son that is so funny and upbeat. He hates having this, but rarely complains. He just does each day and tries to live like he doesn't have it. I think some of that is due to being so vigilant on his health...I get tired of all the...thinking...thinking...and watching...watching...more thinking... etc. Therefore...crohn's is my life............SORRY so Wah Wah Wah...Its one of my weaker days.
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.

Last edited by Brian'sMom; 02-14-2013 at 10:12 PM.
02-14-2013, 10:40 PM   #35
Kimberly27
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My 17 year old son, Reed, was diagnosed three months ago, so I am new to this. I finally had the time to catch up on paperwork. I found myself recycling papers, receipts, and ticket stubs with the thought, "Oh, that was before the Crohn's diagnosis". I feel like the diagnosis has been the dividing point between "the old life" and "the new normal". (Sort of like BC and AD on a timeline!)

I'm pretty tough. I'm a martial artist, climber, (sixth grade teacher- LOL for listing that under "tough"), etc. But this? This really took me out! It was hard for me to relate to the "depressed me" and hard for my friends as well. I had to go on antidepressants to make it through the day without crying. I also take Trazadone at night as an anti-depressant booster and sleeping aid. Without sleep, I'm useless. I saw a counselor. I had to give in to all of this and have faith that the dots in life would somehow connect.

I'm back at the martial arts studio. Sometimes it feels great to hit something! I mediate, talk to friends, cry with friends, and try to have a little fun. (My son and I are playing the Walking Dead and Lego Lord of the Rings video games together when he has bad days.) I try to be silly whenever possible. I force myself to wear colors other than black. I listen to a great mediation (hypnosis piece) every night when I go to sleep. It's the best one I've ever found. It's called Deep Relaxation by Doreen Blumenfeld (Itunes). That and a great eye mask help me sleep when all else fails.

Oh yeah, red wine, dark chocolate, and foot rubs help too!

It's been great meeting all of you. I'm so glad I found this forum. You are helping to heal the hurt.

Happy Valentine's Day.

Kimberly

Last edited by Kimberly27; 02-14-2013 at 11:02 PM.
02-15-2013, 08:28 AM   #36
Devynnsmom
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Kimberly,
I'm so glad I found this forum too. We went through years before diagnosis and 3 years after with nobody to talk to. My family and friends just don't get it. They think IBD is IBS and that Devynn just has a sensitive stomach. If only it were that easy.
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
02-15-2013, 06:41 PM   #37
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This is a great thread. And am I the only one who feels like I am really hugging people when I press the hug button on here? Lol It's the most powerful feeling I have all week! lol HOw awesome is it that just by hitting a button I can throw support someone's way? Seriously. Anyway, I am probably too new to all this to add much to the actual discussion. Two months in, I mostly am still trying to translate all the medspeak and such, still pretty overwhelmed but trying to just take it moment by moment. I am a bit OCD already, not sure a dx like CD helps anything with that. Lately, I have just felt really tired. I have really been rethinking alot of our time commitments lately with regards to kids activities; I mean, how great is it for them to be involved in more stuff if their mom is tired and overwhelmed? NOt so great, actually. I am following through on our commitments for this school year as I can, but I will definitely be taking a really hard look at what we say yes to come next school year, as well as this summer. And I have not had a vacation since before we moved a couple years ago. I am well overdue, but it looks like we may be traveling to the hospital in Cincinatti, adding a day or two to sightsee and calling it a vacation this year, due to financial constraints. What I really want is to go to the beach or some all inclusive resort in the Bahamas. lol
02-15-2013, 06:49 PM   #38
Devynnsmom
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Chefmommaof6, I feel the same way about the hug button. I use it and feel like I've sent out a cyber hug. When I receive one, I feel like I've been hugged
02-15-2013, 06:56 PM   #39
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Rofl I am a touchy feely, huggy person as it is. lol Hopefully, I won't become too overly obnoxious with it. But Having a hug button is probably dangerous for me. I am too empathic to not want to hug someone. If my family ever finds out, they might have to have to have an intervention. lol I wish FB had a hug button....it's like 10,000 times better than just "Liking" something. If only all of life were that easy, huh?
02-15-2013, 06:58 PM   #40
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I try to remind myself that everyone on this earth has trials, and their cross to bear. I try to look at my son's IBD as a condition to be managed because "disease" is too scary of a word. I try to focus on the good changes it has brought about for our whole family as far as being more healthful in our food choices. I look at my son, and how brave he is in the face of blood draws, and his sense of humor when we get to "play scientist" (i.e. stool sample collection), I am thankful for the days he feels good, eats well and has "perfect poop". I try not to borrow trouble and let the "what if's" crowd my mind. I try not to let IBD define who my son is...it is a part of him, but it is not all of him.
02-15-2013, 07:00 PM   #41
Farmwife
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I try not to borrow trouble and let the "what if's" crowd my mind. I try not to let IBD define who my son is...it is a part of him, but it is not all of him.
Thank you, we would ALL do well to remeber these words.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
02-15-2013, 07:01 PM   #42
Devynnsmom
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lol chefmomma!
02-15-2013, 10:34 PM   #43
Jmrogers4
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Rofl I am a touchy feely, huggy person as it is. lol Hopefully, I won't become too overly obnoxious with it. But Having a hug button is probably dangerous for me. I am too empathic to not want to hug someone. If my family ever finds out, they might have to have to have an intervention. lol I wish FB had a hug button....it's like 10,000 times better than just "Liking" something. If only all of life were that easy, huh?
Have you found the hug emoticon or
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-16-2013, 03:56 AM   #44
CDJ
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Like so many other I also go into survival mode. I have also become a bit OCD I think when it comes to Devynn and her signs and symptoms. Every little pain, I worry about. Every time she gets super gassy, if her eyes look dark, if she seems tired or worn out.

Its hard doing it on your own. I am a single mother and my kids have no contact with their father. Long story, but it is what it is and we are all better off this way, believe me. I worry about her all the time. When things are good like right now, I can breathe a bit. But as soon as she gets a pain, or something it all starts all over.
I have no real friends in real life I can talk to because as much as I have tried to educate them (the ones who are interested), they just don't get it. I've been told , well atleast its not cancer! Yes, OMG I thank god every day that this is not a terminal illness. But it is a lifelong, illness that makes her (and all our IBD kdis) sick, in pain etc. I have kind of backed away from friends who act like she's faking, or things can't be THAT bad etc. Both my parents have passed and I don't like to put it on my older kids. But they are great when I really need to vent and have nobody. I just don't like to dump on them.

I have trouble sleeping most of the time, but ESP if she's not well. My mind just doesn't seem to want to shut down and let me sleep. I am SO happy I found this forum. I don't know what I would do without all of you. I've never felt like I'm asking stupid questions, or that people think she's over acting *huge eyeroll* When I post, I have people replying who actually care, and who are full of experience, and ideas.

Great thread BTW
You could be writing my story! What you have said is so much the same, I am a single parent too, who feels very much on my own with this. I have been questioned by "so called friends [ and my sister ]" as to whether my son is faking some of the symptoms. Few people have an understanding of this disease and think that they will grow out of it, or it is caused by what they eat!
Like you I notice every little thing my son has and wonder if this time the flare up is starting. I know I drive my son mad sometimes asking him if he is okay

His dad lives 300 miles away and has a new family and has no understanding of what we go through, and doesn't seem to want to.

I often feel I am fighting a brick wall trying to get help for my son and wish sometimes I had someone here to just be on my side and give me a hug.

It has been really good for me to find this site and to find parents going through the same thing and understanding everything.

Devynnsmom, on a slightly different subject, I see you are from Toronto, I have an older son who lives in Toronto too, and will be coming your way in the summer.
02-16-2013, 10:32 AM   #45
Devynnsmom
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CDJ, I'm sorry you are going through this alone as well. I'm also sorry we have crappy (no pun intended) people in our lives and our kids lives who are ignorant to learning what IBD really is.
This site really has been amazing for me. I really felt so alone and lonely before when it came to Devynn's disease. I also have older kids (18,22,23) but I don't like to lean on them. They are great, but it just doesn't feel right. They ARE my biggest support off these boards. They are eager and willing to learn everything there is. They often come to me and say Mom did you hear.. or did you see ... on the news?
I am from Toronto! What part of Toronto is your son in? How old is your IBD son? Devynn is 11.
02-16-2013, 12:11 PM   #46
CDJ
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Thanks Devynnsmom, it is nice to know I am not alone dealing with this, and as I said good that there are others to talk to who understand.
My elder sons are 37, 35 and 33, all long flown the nest, but all a great help when need be.

My son with IBD is just 12, he was 8 1/2 when diagnosed, so he is a similar age to your daughter

My elder son, Scott, lives in Western Battery Road, it isn't too far from the lake. He married a Canadian from Winnipeg and has been in Canada for 10 years this year. They lived there for the first few years of their marriage, then moved to Toronto 5 years ago. I love Toronto, and can't wait to come over in the summer. My youngest won't be with me this time though as he is going away with his dad.
02-16-2013, 07:38 PM   #47
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So glad to see myself in all of these parents. Feel so isolated sometimes trying to do this as a single parent. Even being a nurse for 35 years doesn't matter when your own child is chronically sick and you can't fix her.Also have a grown daughter with Crohns. I'm about OCD'd out. Our problem has been dealing with doctors who think they know all of the answers, but fail miserably when it comes to complex problems with IBD. Parents please seek second opinions at larger hospitals who specialize in IBD. Doctor egos need to go out the window when it comes to the health of your child. There is so much trial and error, and every patient responds differently to therapies. We need a breakthrough with IBD and soon ! Thank you all for venting your pain. I feel you.
02-16-2013, 11:00 PM   #48
Devynnsmom
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CDJ ok, thats not too far from me.
02-18-2013, 03:11 PM   #49
Brian'sMom
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CDJ ok, thats not too far from me.
Wouldn't it be so neat to have a Forum Get Together? We'd all get to meet after talking by forum for so long! This forum joins us all over the world!
02-19-2013, 09:41 AM   #50
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I just came across this thread. How appropriate considering I'm in that woozy, hazy, been-up-all-night daze.

I don't cope well.

I hate to say it, but I think Crohn's pretty much runs our life. I try really hard not to let it, but sometimes it just does. Even on good days, it feels like we're all waiting for the shoe to drop. Then the dog will puke and I'll think, "Great, the dog has Crohns too!"

Physically, I tend to stop eating when my son is sick. I get this pit in my stomach that has become all too familiar lately and I have to consciously force myself to eat, take vitamins, and drink water. Mentally, I just hold it all in until everyone's asleep and then cry my eyes out. I hate this disease.

And no one seems to understand except for you guys. It wasn't until one ER visit, two hospital stays, and one surgery all in one month before people around me realized that I'm not making this all up.

Sorry for the negativity... just feeling the stress this morning and wishing the nurse would hurry up and call back.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
02-19-2013, 09:46 AM   #51
Devynnsmom
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Brain's mom.. That would be SO cool!
02-19-2013, 11:08 AM   #52
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This may come across as a little cheesy and I don't mean to intrude, but I just want to say that you are all FANTASTIC parents. I am 19 and as much as I love my parents, they aren't really involved and don't like to hear new things I am reading about or really discuss Crohn's in detail, which is frustrating. I'm sure your support is helping your kids through this and they are all lucky to have such great parents looking after them!
02-19-2013, 11:17 AM   #53
Devynnsmom
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kiik,
You are not intruding! I am so sorry your parents are not supportive They probably feel helpless. We will support you here. We will be here for you to talk to, vent, ask questions and be a shoulder to you if you need one (actually several shoulders). We (I know I speak for others) are interested in hearing things from your point of view, and welcome you. (((((hugs)))))
02-19-2013, 11:19 AM   #54
Crohn's Mom
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Ditto to what DM said ! ^^^
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DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
02-19-2013, 11:25 AM   #55
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Kiik...ditto for me too. Also there are plenty of young people on here to interact with and bounce symptoms, treatments or vents off of, please take a look around the forum!
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
02-19-2013, 11:31 AM   #56
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Couldn't agree more as well...

kiik, I also agree with DM re the helplessness your parents may feel; it may be their way of coping. Unfortunately, it may leave you a bit stranded at times. Please feel free to come here to ask questions, advice, etc. There's always someone with experience and lots of support!

Also, as was said above, your insight will also be appreciated!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
02-19-2013, 11:34 AM   #57
Jmrogers4
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Mehita, Hope you hear from the nurse soon. I hate waiting! I hear you on the Crohn's running your life. Even when life is good there is still that nagging, watching and waiting in the back of your head and for every little bug, virus, rash, etc. you think does this have something to do with Crohn's is it a flare coming on? What can I do to stop it? I have to tell myself all the time that not everything has to do with Crohns
02-19-2013, 12:44 PM   #58
CarolinAlaska
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Mehita, sorry you're having a bad day. I hope the nurse can give you good direction that really helps. I'm sorry you feel alone among your friends.

Kiik, I second what everyone else has said. Parents respond differently, but it may be their way of coping, or of trying not to get confused. Some like the denial route or perhaps the "ignorance is bliss" track. My poor daughter gets the opposite - I have to know about each day - how was her tummy, her joints, how many stools and what kind - and then I share it sometimes on the worldwide web (here). Poor girl. I'm sorry your parents seem disinterested. I hope that you can find the answers to your questions and the support you need here.
02-19-2013, 07:30 PM   #59
Brian'sMom
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Kiik, You're always welcome here!! And I agree that some people can't handle the pain of diving in and really 'living' the disease with their loved one. Have you mentioned it to either of your parents? Maybe they think they are doing you a favor by 'not bringing it up'. My husband and I lost a baby when I was only 18 weeks pregnant. My husband's parents never mentioned him...while my parents celebrated him and pray to him...(They all had held him). Then after we asked, My husband's parents told us it was too painful for them to see us cry and they were 'protecting us'...they didn't realize we wanted to talk about him...even tho it made us cry. Just an example. I originally thought they didn't care and it was not the case at all.
02-19-2013, 10:27 PM   #60
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Brians Mom: I would love to meet all of you someday I am like you, I like to talk about the loved ones we have lost. I talk to way to many people I meet about Baylee's Crohns. I am getting better. I do not tell everyone I meet anymore I am sorry you lost your little baby

Kiik: You are going to have more support than you can imagine here
We are all like Carolinalaska, we want to know everything!!!

Mehita: I get that feeling too, when our daughter is sick. Please feel free to vent, I am still in awe how we all have so many of the same feelings, concerns, and day to day similarities to our lives as parents of children with this disease.
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