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Crohn's Disease Forum » Parents of Kids with IBD » Just depressed over my son having this.


11-12-2010, 09:23 PM   #1
AntsMommy
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Just depressed over my son having this.

I just wanted to vent/cry a little and I figured no where else would others be so understanding.

As I listen to my poor son in the other room who is experiencing a pretty bad flare up right now, and I am just worried about his future and feel horrible about him going through this. He had Chinese food for the first time yesterday since diagnosis, formerly his favorite food. Even though he stayed away from veggies, it isn't sitting well with him.

Anyway, I worry about him getting through high school, college, and all his lifelong hopes and dreams of becoming a veternarian. I worry that he won't be able to pursue his dream. I worry about him getting married and having children.

Maybe this is a little overboard or premature, but it is one of those nights. I just feel like he is suffering so much. I wish I could have it and take it from him. I feel so helpless.
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Kelly

Mom to 16 year old son with Crohn's Disease
Diagnosed September 2010
Phlegmon 1/2011
6MP - started 12/22, increased to 50 mg
No more pred!
1/31 - ileocolic and small bowel resection, 2 strictures removed
11-12-2010, 10:52 PM   #2
susanfrances
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I understand how you feel. When I think of even the possibility of my little girl taking 6MP one day, somehow my plans of what I want her life to come to mind. The good days outnumber the bad days for us, we are very fortunate in that. We talk about plans for her as she grows up, looking forward to the day they find a cure; for all of us.
Many, many, many of us live our own version of normal lives- I work with students with health disabilities and have two beautiful children.
AS a mom, I know how hard it is to watch them suffer- feeling helpless. This disease stinks, but at least we have some support.
I"m not sure what your beliefs are, but I have found comfort in prayer, in faith, and in knowing that God doesn't make mistakes. Sarah was very upset last night after her CT results. We read this together: Psalm 139:13-16
13For you created my inmost being;
you knit me together in my motherís womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
It reminded us that God knew each day, each moment, before we came into the world. We have faith in knowing this will somwhow work out for the good.

Hang in there-- hugs-
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Diagnosed in 2007/ Crohn's (ileocolitis) Fistulatomy with seton placement 2007, 2008
6MP 2007
Pentasa/Entocort: no luck
Humira: allergic
Cimzia: started 12/10..fingers crossed

Also, sweet, precious 9 year old daughter with hx of weight loss, diarreah, abdominal pain and cramping, CD- terminal ileum- 11/10- trying every possible homeopathic route first
11-13-2010, 01:01 AM   #3
DustyKat
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Hey Kelly,

Vent away hun!

I don't think I would be speaking out of turn in saying all the parents here know exactly how you feel and have those very same fears for their children, I certainly do. I worry about Roo every single day and she has been in remission for 4 years!

Roo has certainly had her ups and downs and this disease has shaped her life in many ways and hard as it is for me to believe at times, in many ways it has been positive. It has made her more compassionate, insightful, determined, caring, worldly and wise. She knows what the most important things in life are and how to live it to the fullest. She had a major disappointment just recently but has picked herself up, dusted herself off and moved on.

God knows I know how hard it is to watch your child suffer and you will get through this but along the way you need to have a cry and vent so you can take a deep breath and move on again. We are here for you Kelly and you sure have found the right place for understanding!



Sending loads of squishy hugs your way, :hugs:
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11-13-2010, 05:52 AM   #4
Dexky
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Kelly, I'm sure you won't have to tell your son to add Chinese to his no-no list after this. My son is only 11 but I am amazed at how intune he has become with his body!! The meds and the crohns knowledge is getting better all the time. I can't help but believe our children will have a bright future. Hang in there...both of you!!
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11-16-2010, 09:59 PM   #5
AntsMommy
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Thank you all soooooo much.

We had a rough weekend and are getting back into the swing of things. I really appreciate you guys reading. Thank goodness for this board.

Dexky, I keep reminding myself of what you said: the information and medication will continue to improve, maybe this will all be behind us one day.

Thank you!
11-17-2010, 10:15 AM   #6
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I think these are feelings and thoughts all parents who have children with Crohn's experience. I cry at least once a day and fight against crying most of time. It is so hard to sit back and watch your child suffer knowing there isn't a thing you can do. We just got news this week that I had prayed we wouldn't hear until my child was older but my son is facing removal of most if not all of his colon soon. On the upside the ilieostomy he now has will be gone but I worry about what will happen if the crohn's starts up in his small intestine. He is only 11, way to young to face all of this or the thought of a permanent ostomy. So Vent away, we all have days we just want to sit and cry. Hang in there, thoughts and prayers with you.

Marsha
11-17-2010, 10:42 AM   #7
Misty-Eyed
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Hi Kelly,

I don't have any children but I was diagnosed at 9 and was really ill for years after that. But there is light at the end of the tunnel. I now have a degree and hopefully will have a job as a scientist soon. I'm doing well, I love life and I went out for a massive chinese meal last night for my birthday with all my family and my only complaint was a massive bloated belly!

Sure I have bad days still and my mum still worries when I go to the hospital for appointments but anyone that doesn't know me well wouldn't have a clue about my crohn's. It did take me a little longer to get my degree than the average person but my crohn's has made me more determined to do well in my life and be the best person I can be.

I know it must be awful to see your son suffering without being able to help much but as long as you are always there for him and support him, it'll help him loads. I still well up when I think of all the stuff I've been through with my parents but he will get through this and so will you. Plus you will both be much stronger for it. Hold in there! x
11-18-2010, 08:57 PM   #8
Dexky
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Hi Kelly,

I don't have any children but I was diagnosed at 9 and was really ill for years after that. But there is light at the end of the tunnel. I now have a degree and hopefully will have a job as a scientist soon. I'm doing well, I love life and I went out for a massive chinese meal last night for my birthday with all my family and my only complaint was a massive bloated belly!

Sure I have bad days still and my mum still worries when I go to the hospital for appointments but anyone that doesn't know me well wouldn't have a clue about my crohn's. It did take me a little longer to get my degree than the average person but my crohn's has made me more determined to do well in my life and be the best person I can be.

I know it must be awful to see your son suffering without being able to help much but as long as you are always there for him and support him, it'll help him loads. I still well up when I think of all the stuff I've been through with my parents but he will get through this and so will you. Plus you will both be much stronger for it. Hold in there! x
Thanks for that Misty!! From all of us parents, I'm sure.
11-18-2010, 11:38 PM   #9
Mami
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I second what every parent here has felt. We're new here too as my daughter was dx'd a month ago. This site has been immensely helpful...just to read this one thread, I saw so many feelings that I think we all have felt... I just kept thinking... this wasn't my dream for her...but you know, there will be a day when your son feels better and you feel like your head is above water... It's funny, Susan put a Psalm on here that has been one that I've always read to my own children. You will find wonderful people here that understand and empathize.
We had a breakdown at our house tonight b/c Marilena was begging for broccoli and you feel so rotten for telling them they can't have something when they're already going through so much... I'm sorry your son had to experience the pain as well as the pain of having to give up a favorite food. Hang in there!
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dx 10-7-10 Crohn's in terminal ileum

Pentasa 1000 mg
6 mp 12.5 mg
Omega 3 1000 mg
Liquid Vitamin C
Calcium tablets
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Probiotics
Emulsified Vitamin D 2000 IU
Hugs (daily)
11-19-2010, 04:00 AM   #10
Misty-Eyed
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Thanks for that Misty!! From all of us parents, I'm sure.
No problems
12-04-2010, 03:51 PM   #11
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Hey there Im really sorry I know my mom went through this (and still does) with me too. I am 19 and in university, I was diagnosed at 16. Im sorry he has it and your feeling this way but in the end I am sure it will work itself out. With a mom who obviously cares a lot he will have it much easier than most and he will make it. Teachers and profs almost always understand and if not a meeting with mom always takes care of it. As for the girls and marriage any girl who cant get passed the fact he uses the bathroom a lot isnt worth having anyway and you will probably find your son will grow up and mature faster due to this. Dont give up hope and he will be okay. Ask lots of questions, we are all here for you and for him.
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Diagnosed October 2007
Currently on Remicade 400mg (October 2010)

Tried Budesonide (april 2010-july 2010) & Asacol (october 2007- dec 2009) & Imuran (Dec 2009-Dec 2011)
12-05-2010, 06:20 AM   #12
rosie55
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I am sorry that I cant be positive as we have had a very long 10 years battling with my sons health. He is 22 now and is totally dependant on me. He has no life, sits in his room night and day, his social life is his computer friends. He has had 2 jobs since leaving school both of which did not last long because of his illness. He was sacked from both jobs and had really bad experiences with the managers of both companies. They did not understand or care about the awful symptons my son suffered. He had a permanent ileostomy and rectum removal a year ago and believes that girls will think he is a freak. He has had a tremendous amount of support from GP and hospital but sees no hope for a future. He talks about going to a clinic in Switzerland to end it all. I feel so helpless that I cant do anything to relieve his physical and mental suffering. I am petrified I am going to lose him.
12-07-2010, 06:40 PM   #13
AntsMommy
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Misty-Eyed, thank you so much for sharing that, it is really encouraging!

Thank you all for your comments, I am so grateful for this site!

(((Rosie))) My heart absolutely breaks for you. Please don't take this the wrong way, but I think you are now dealing with what I am terrified of happening. Does he see a therapist or psychologist, someone to help deal with the emotional ramifications of this disease? I am so sorry, I wish I had some advice. I think you are doing the best you can for him ... hanging in there and not giving up. Hugs!
12-10-2010, 05:29 PM   #14
rosie55
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thank you Kelly for your hugs. I hope I didnt make it harder for you. I think that this is the first time I have let on to anyone how I felt deep down since my son was diagnosed. I can so empathise with you and how you fear for your sons future. It seems that this disease can effect people in varying degrees of severity and it may be that your son will find he has long periods of remission and dosent have many flare ups. I hope and pray for him that is the case.
12-12-2010, 06:12 PM   #15
kimmidwife
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Hi Everyone,
I am also feeling depressed and down. My daughter who is now 13 was diagnosed with crohns 4 days b/f her 11th Bday. She has been having a very rough time. She does not do well with the meds we have tried a lot of them. We finally got her doing well for 10 months on Methotrexate. Then in September it all started up again. They found something weird in her ascending colon and now we are awaiting surgery on tuesday. I am a nervous wreck and just keep crying but I don't want her to see me cry. I am afraid of what will happen how the surgery will turn out if she will end up needing a colostomy or what. (the surgeon said hopefully not)

Kim
12-12-2010, 08:20 PM   #16
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(((Kim)))

I am so sorry to hear that. I am new to Crohn's also so I don't have any great advice, but just want to say that I feel your pain - the fear, uncertainty, sadness at the possible loss of many dreams we have for our children. It is hard to remain positive sometimes, but I do believe that we must do so for our children.

Perhaps this surgery will turn out to be a wonderful thing and end up with years of remission for your daughter. With medicine improving all the time, maybe there will be a cure within our children's lifetime.

Please let us know how it goes Tuesday!

Kelly
12-13-2010, 03:17 AM   #17
rosie55
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Hi all you parents

A bit of advice, and forgive me if you have already thought about it and done it. I found that when my son was going through school his teachers were so ignorant about his condition. I printed off an information sheet about Crohns which I took from the NACC website, and gave it to his Head of Year to pass on to his teachers. I also posted the same sheet in the school staffroom. In my sons case it didnt help, the Head of Year said he would pass it on but couldnt guarantee that my son's teachers would read it! I should have taken this up with the Head of the school but I didnt. He was written off as a disruptive student and the teachers didnt take into account that he was in a lot of pain, was on powerful meds that affected his mood and he was being bullied because he had put on a lot weight from the steroids. I didnt ignore what was going on but I didnt go high enough in the school to try and get it sorted. Please be vigilant about your children coping at school and dont be afraid to go higher if you feel that your childrens teachers arent taking you or your child seriously. I also have found that the emotional impact on my son has been more difficult to deal with than the physical impact. I wish I had been wiser and taken him to see a clinical psychologist when he was younger instead of leaving it until he had the big op. If he had seen the psych earlier it may have been easier for him to learn coping strategies and he might not have had such a bad self image. He has seen the psych since he had his op but gave up the sessions saying they didnt help because it didnt take away the fact that he permanently carrys a bag of sh*t around with him and he is in constant pain.
12-13-2010, 03:51 AM   #18
crazycanuck
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Hey there its a good idea. When I was in high school and still now in university I have a preprepared note from my GI about me having crohns causing urgency and absentism. For everyone of my classes since grade 10 Ive taken in my note and said look I have this disease which means I use the bathroom a lot, Im late often, I miss class often, I leave in a hurry without saying anything, and this is my note. I have only had one slight problem so far and my doc called him and we were all good.
12-13-2010, 11:18 AM   #19
Silvermoon
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Like a few of the others, I am not a parent but I was diagnosed at the age of 10 (I am now 37). My brother was diagnosed about 3 years after me, when he was 11 (he is two years younger than me). My parents never talked much about how they felt about all of this (at least not to us kids), but I am sure it must have been fairly hard on them. We also lived in a fairly isolated community at the time, and our specialists were a 10 to 12 hour drive away (there were local general practitioners, who were really very good at keeping in touch with the specialists to monitor our conditions, but they couldn't do it ALL for us... lol).

I have had a feeding tube, 3 resections, kidney stones, just about died from pancreatits and two hemorrhages, as well as a whole other host of related issues.... and still graduated from university with my Bachelor of Science in Nursing and have been working pretty much full time as a Public Health Nurse in remote areas since 1998. I got married in 1998 to a wonderful man who has probably researched the disease more than I have in order to be prepared for what may come...LOL! We haven't been able to have children, but overall, I feel I have had an extremely productive and fullfilling life.

My brother is a bit of a different story... not as many CD problems... but his mommy "babies" him a bit more (OK QUITE a bit more) and he has never really had to take care of himself, so he doesn't.... That being said, at present he is having the first signs of any kind of trouble in about 12 years.... maybe lack of stress related to mommy doing everything for him?? LOL! :shrug:

I guess maybe what I am trying to say is... it can go either way.... a lot of it is going to depend on YOUR child. The one thing I CAN recommend though, is NOT to baby him.... love him... support him... and do everything you can to grow his OWN wings and fly..... Other than that, he will have to make his OWN choices in life....

Like I say, I am not a parent (of any kind of chilrden, sick or healthy), therefore I can only imagine what you may be going through. Knowing how I feel about people I care very deeply for when they DO get sick, I can say I am glad I am "the patient" and not "the parent".... I can handle the physical stuff... not sure how I would do emtionally if a loved one was suffering with something I couldn't help them with.

But don't EVER feel guilty for the feelings you ARE feeling.... I think they are fairly "normal" under the circumstances..... Vent with us... cry with us... lean on our shoulder when you need too.... cause there will probably be a day when one of us will need your shoulder to lean on.....

Squishy hugs........
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12-13-2010, 11:27 AM   #20
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Thank you so much, SilverMoon. I think we need to read more stories about "Crohn's Kids" who have grown up, attended college, and have gone on to live happy successful lives. I know that this NOT happening is my greatest fear! Thank you again!
12-13-2010, 09:17 PM   #21
kimmidwife
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My daughter's surgery is tomorrow and I am a nervous wreck. She is having a right hemicoloectomy. I am trying not to freak out!
12-13-2010, 09:24 PM   #22
crazycanuck
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Good luck kim and doctors are so good at what they do Im sure she'll do great. There is a whole host of people here who have gone through surgeries no problems at all. Best of luck and I hope she has a quick recovery.
12-13-2010, 09:41 PM   #23
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(((Kim))) Good luck! She will do great, you will see! I will be thinking of you guys! Please post tomorrow to tell us how fabulously she did! :-)

Kelly
12-16-2010, 11:11 PM   #24
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Sorry I have not been able to get on the computer sooner My daughter is doing alright. The surgery was more extensive than they thought originally. The best thing has been that they gave her an epidural for pain control. I never knew they were used for anything but childbirth. It has made a huge difference and I highly reccomend it to anyone getting surgery. We are hanging in there.
12-16-2010, 11:36 PM   #25
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Hi Kim,

I am glad to hear all went okay, and that she has an epidural! That must be extremely helpful! Give her hugs for us, and check back in. Take care of yourself too!

Kelly
12-17-2010, 05:57 AM   #26
Dexky
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Kim, I am glad they're addressing her pain for her and you!! There's nothing worse than seeing your child in pain. I pray things continue to improve for her as she recovers. Best wishes to you all!!
12-23-2010, 07:10 PM   #27
kimmidwife
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Hi Everyone.
Well my daughter is home and doing pretty well. She has very little pain from the surgical site and her stomach pain seems better. She is still having a lot of nausea. It has been a crazy few weeks and I am drained and still feeling down in the dumps. I hope the next few days off work will help!
12-23-2010, 07:16 PM   #28
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Hi Kim, I don't know much about it. Just wondering what the docs say about the continued nausea. I hope that settles and you all get to enjoy the holidays!!
12-29-2010, 09:39 PM   #29
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Hey there Im glad surgery seems to have gone well an shes home recovering. Best of luck!
12-31-2010, 07:14 PM   #30
DustyKat
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My daughter's surgery is tomorrow and I am a nervous wreck. She is having a right hemicoloectomy. I am trying not to freak out!
Hiya,

Sorry about the late reply, I haven't been around much lately. Good to hear your daughter is now at home and doing okay. My daughter had a Right Hemicolectomy 4 & 1/2 years ago when she 14 years old and she also had a large amount of bowel removed, 68cms in total which was 59cms of small bowel and 9cm of large bowel. If there is anything you think I may be able to help you with please don't hesitate to ask.

Thinking of you,
Dusty
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