My son is 10 and has FAP for a year now and had his colon removed. Surgery was a success and hasn't had any other health issues, just the typical watery stool,low immune system, low iron symptoms. He is also very depressed since then, aggressive, moody, don't wanna live and prefer to be dead then live like this. He hasn't been able to return to school and this is the second year I'm home schooling him. He also has anxiety issues and ADHD since little. Anybody here has gone thru kids with this type of issue??? He is on Immodium, Colestipol and fiber pills a year. Takes iron and vitamins and has normal diet. Has accidents only when he naps or sleeps. Dr says its due to him relaxing muscles when he falls deep asleep. He don't eat 3 hours before bed as well. My son says he don't feel normal and won't ever. It's been over a year since surgery and even myself feel I have depression and cry a lot alone at night. I'm a single mother doing it all. I work and home school him too :-)
Replies sorted oldest to newest
I would like to say that this is just a phase that he will get over and to just give him time. But, when kids (or anyone) discusses the fact that dead is better than their current life, you need to address it. I would talk to his primary physician and get a referral for a psych evaluation. Best case scenario, you find out that he is just blowing off steam to someone who cares. But, if this is serious depression, he needs treatment.
It sounds like he was dealt a bad hand and things progressed quickly without enough time for him to adjust to the necessary changes. Some kids adapt more quickly than others. Everyone is different. But, the bottom line is that we all have to accept how things are and make the best of our situation. The goal is to adapt to a new normal, and accept that it is OK to be different than others. Anxiety and ADHD probably do not help in that regard. So, again, get help for him. YOU too! Maybe some family therapy might help you both. I am sure others who have gone through this will have some good insights on this.
Good luck, and give yourself a pat on the back for being a super-mom!
Jan
It sounds like he was dealt a bad hand and things progressed quickly without enough time for him to adjust to the necessary changes. Some kids adapt more quickly than others. Everyone is different. But, the bottom line is that we all have to accept how things are and make the best of our situation. The goal is to adapt to a new normal, and accept that it is OK to be different than others. Anxiety and ADHD probably do not help in that regard. So, again, get help for him. YOU too! Maybe some family therapy might help you both. I am sure others who have gone through this will have some good insights on this.
Good luck, and give yourself a pat on the back for being a super-mom!
Jan
My experience is not like yours, but I have been active on this and similar message boards. The UOAA (United Ostomy) board has a grouping for Teens that may contain postings that would be helpful for your situation. I found a posting on this board that listed a Facebook listing that also might be helpful: https://www.facebook.com/group...rs/?bookmark_t=group
Your son is at a very challenging age (I was the single father to 2 daughters many years ago) and he probably is too young to understand that there are lots of people who have had his type of surgery and are now enjoying a good quality of life. Is he being seen by a counselor or therapist who is experienced in dealing with teenagers faced with the issues your son has?
Your son is at a very challenging age (I was the single father to 2 daughters many years ago) and he probably is too young to understand that there are lots of people who have had his type of surgery and are now enjoying a good quality of life. Is he being seen by a counselor or therapist who is experienced in dealing with teenagers faced with the issues your son has?
My son has a psychaitrist since he is 6 due to his adhd and anxiety disorder. He is now dx with depression,mood disorder as well. He does not talk to anybody else but me about how he feels. We tried counseling and they cancel it due to him just sitting there and didnt say a word. He always been a shy kid because his mild autism. But he very outspoken with me. But after surgery he changed. His dad is a FAP carrier as well but has the colostomy bag. We divorced for 6 years now but always travels to see his son. But his son became now very distant from his dad. No calls, no skype . Been very hard for me. Cause i remember me when i was married and his dad got dx and he went theu 5 surgeries. He also got very depressed and now a day has had suicidal attempts, takes over 20 pills a day for moods,sleep,depression,pain, bipolar etc.. has very low self esteem. I see it all in my son already. He is on 2 meds for depression and anxiety so far. Dont see them working much.
Billy . The link didnt work. Just took me to my own fb page.
i have gone through terrible depression from this surgery. there was a time when i didnt want to be here anymore but i have turned a corner with the right meds. there is a definite connection with losing your colon and a reduction in serotonin production. perhaps he needs a change in his medication. its worth a shot. nortriptyline and ativan has worked for me.
Oh, how my heart goes out to you! I have a ten year old son who has struggled with asthma but I can not imagine having to watch him endure the j-pouch surgery. I struggled with the surgery as an adult and it was for severe UC. To be a child who feels healthy and then to go through such a difficult surgery that changed his body so much- no wonder he is having a hard time. How hard it must be for him to deal with having accidents while he sleeps. I am not surprised that talk therapy would not work for him. I would guess most kids that age would have a hard time talking about such private issues with someone they would perceive as a stranger. I do not even want to talk with family members about how I feel when I have night time accidents. I wonder if art therapy or animal therapy would be a much better option for him and may help him. Do not give in to your discouragement! Your son is leaning on you for his strength. I am sure that he is tired of doctors and pain and medications as you are. This site is a good spot for you to receive guidance and support. Sometimes you just need someone to listen who "gets it".Your son is about a year out and this is still in the early stages of recovery. I know that sounds odd- a year but it really is so true. This surgery takes a long time to recover from. I think there are also some support sites for parents of young children who have had this surgery. I think maybe they are on Facebook? I know others on this group will know where those sites can be found. You may find others who are going through this with their children as well.
LilMoe03,
I am so terribly sorry that you are going through this with your son...it is so unfair.
I am not a mother and I do not have kids but I Was that kid.
I was sick since birth and had my first surgery at 2, my first ostomy too. They closed it later and left me so sick and incontinent that school was a pure nightmare for me but in those days home schooling was impossible and my mom worked so it never happened.
Being little, sick, incontinent, taking meds all the time and making messes of yourself asleep or awake is not 'normal' for a kid. And kids feel it. We feel lonely, different, unaccepted, unloved and very sad. My mom tried hard but there was nothing that she could do...she could not make me better or make it all 'go away'. I was sick. End of story. Being isolated made it worse. What helped me was when I found a best friend. Once I had someone my own age who accepted me and was around to play with me, life got better. It wasn't perfect but I finally had someone to 'talk to' that wasn't 'obliged to love me'...she liked me for me, inspite of my flaws. I can honestly say that she saved my life. It didn't mean that I didn't cry of get depressed but at least I didn't feel so lonely anymore. She is still my best friend today, 40yrs later and I thank God every day for her and her acceptance, friendship and love. (she is here in Paris on a visit this week!)
My mom sent me to a psy...it made things worse. She sent me to group therapy but those kids couldn't understand my problems, they were spoiled rich kids with rich-kid problems. No way that helped. He needs to talk to kids like him, a group of other kids going through the same thing, who can give him tips and advice and understanding...they can also help him to laugh. He is probably not laughing enough. Laughter is part of growth and development. I never laughed before my best friend, once she came into my life, I learned to laugh.
Find a group of other kids with IBD, ostomies or Pouches and send him there. He will feel less lonely, less isolated and maybe he will even find a friend.
I hope that this helps you.
Sharon
I am so terribly sorry that you are going through this with your son...it is so unfair.
I am not a mother and I do not have kids but I Was that kid.
I was sick since birth and had my first surgery at 2, my first ostomy too. They closed it later and left me so sick and incontinent that school was a pure nightmare for me but in those days home schooling was impossible and my mom worked so it never happened.
Being little, sick, incontinent, taking meds all the time and making messes of yourself asleep or awake is not 'normal' for a kid. And kids feel it. We feel lonely, different, unaccepted, unloved and very sad. My mom tried hard but there was nothing that she could do...she could not make me better or make it all 'go away'. I was sick. End of story. Being isolated made it worse. What helped me was when I found a best friend. Once I had someone my own age who accepted me and was around to play with me, life got better. It wasn't perfect but I finally had someone to 'talk to' that wasn't 'obliged to love me'...she liked me for me, inspite of my flaws. I can honestly say that she saved my life. It didn't mean that I didn't cry of get depressed but at least I didn't feel so lonely anymore. She is still my best friend today, 40yrs later and I thank God every day for her and her acceptance, friendship and love. (she is here in Paris on a visit this week!)
My mom sent me to a psy...it made things worse. She sent me to group therapy but those kids couldn't understand my problems, they were spoiled rich kids with rich-kid problems. No way that helped. He needs to talk to kids like him, a group of other kids going through the same thing, who can give him tips and advice and understanding...they can also help him to laugh. He is probably not laughing enough. Laughter is part of growth and development. I never laughed before my best friend, once she came into my life, I learned to laugh.
Find a group of other kids with IBD, ostomies or Pouches and send him there. He will feel less lonely, less isolated and maybe he will even find a friend.
I hope that this helps you.
Sharon
with all the issues and complications i had, and the horrible depression, i could not imagine a young child going through all this. HE IS MY HERO!!
There is a lot of good advice in the previous posts. The only suggestion I would add is about a summer camp where your son would not feel different from the other boys.
The Crohn's and Colitis Foundation of America holds camps for children just like your son throughout the summer. The program is called Camp Oasis. You can watch their video at http://www.ccfa.org/get-involved/camp-oasis.
The first year is hard for almost everyone but the boys I have communicated with seem to have a greater degree of depression during that year. Do you live anywhere near a CCFA chapter? Your son might enjoy going to a meeting and hearing that he is not alone and it will get better.
Many hugs to both of you.
The Crohn's and Colitis Foundation of America holds camps for children just like your son throughout the summer. The program is called Camp Oasis. You can watch their video at http://www.ccfa.org/get-involved/camp-oasis.
The first year is hard for almost everyone but the boys I have communicated with seem to have a greater degree of depression during that year. Do you live anywhere near a CCFA chapter? Your son might enjoy going to a meeting and hearing that he is not alone and it will get better.
Many hugs to both of you.
hello. I have a friend whose son is about 10 and has crohns disease. I would be very happy to connect you with her. Her son goes to Camp Oasis every year also.
let me know
liz.
let me know
liz.
Hey liz. Yes i would like contact. My personal email is mdjr511@aol.com amd thru kik she can find me sugarygal77
LilMoe03
I feel for you in a major way and understand that it is difficult. My son had his colon out when he was 4 and now he is 12. Raising a child like that is difficult and there are challenges for sure. Subzeromambo has some great advice on the Camp Oasis. My son has gone 2 times. Has had a great time. It is a way to connect with others that have issues too. Now all of that being said, sure my son gets pissed off at his situation. He knows he got a raw deal, I encourage him in all of the ways that I can. I know I don’t complain about my J-pouch very much because I don’t want him to be complaining and down all of the time. Our family motto is, it is what it is. You can either choose to be depressed about it or you can fight back.
We moved this last summer and I was nervous about how he was going to do coming to a new area. He has handled it fairly well. He played football last fall, and basketball in the winter. He would just tell his coaches that he might have to go to the bathroom a lot. It was not a big deal they did not worry about it. My point with that is we try to live as normal of a life as possible. We just know he has to go to the bathroom more.
Good Luck and I hope things get better for you.
I feel for you in a major way and understand that it is difficult. My son had his colon out when he was 4 and now he is 12. Raising a child like that is difficult and there are challenges for sure. Subzeromambo has some great advice on the Camp Oasis. My son has gone 2 times. Has had a great time. It is a way to connect with others that have issues too. Now all of that being said, sure my son gets pissed off at his situation. He knows he got a raw deal, I encourage him in all of the ways that I can. I know I don’t complain about my J-pouch very much because I don’t want him to be complaining and down all of the time. Our family motto is, it is what it is. You can either choose to be depressed about it or you can fight back.
We moved this last summer and I was nervous about how he was going to do coming to a new area. He has handled it fairly well. He played football last fall, and basketball in the winter. He would just tell his coaches that he might have to go to the bathroom a lot. It was not a big deal they did not worry about it. My point with that is we try to live as normal of a life as possible. We just know he has to go to the bathroom more.
Good Luck and I hope things get better for you.
I do not have any answers but I will be praying for him/you/doctors. When you don't know what to do or say just say JESUS. I've had to many times in my life. It is a song.
LilMoe03,
My husband & I have lurked this forum for years. When I read your post, I had to register. I'm not a mom...I can only imagine how tough this must be. It's terrible as a wife. We decided not to have kids as a result of the significance of my husband's illness(es). My heart breaks for you because I know how hard it is to sit there & not be able to fix it for him.
I understand how you feel when those very intense feelings are shared with you...as my husband does with me. And not knowing what to do with that information. As the others mentioned, a typical group therapy session won't work...other kids won't relate. They'll try, but they just won't get it. I do think it makes sense to call the psychiatrist to talk about this. Hopefully, you've got one who knows a little about bowel diseases. Maybe talk to him/her about PTSD...as I'm fairly certain that these medical issues have had a traumatic impact on your son. PTSD is one of the anxiety disorders.
Having your colon removed does alter your brain chemistry...that's something they didn't tell my husband all those years ago. He ended up in those groups with others that just don't quite fit. He tried lots of different things. But honestly, we have learned so much from the j-pouch forum. He's learned a lot along the way, but there are still days when he feels just like your 10 year old son. It sounds like you got some great tools to help (I wish my hubby could go to Camp Oasis with your son!
).
Anyhow, I just wanted you to know that I understand what you're going through, too.
PS-From an educational perspective, your school district may be able to provide homebound instruction with a certified teacher. We offer it in Missouri, not sure about New York.
Mrs. Sushi
My husband & I have lurked this forum for years. When I read your post, I had to register. I'm not a mom...I can only imagine how tough this must be. It's terrible as a wife. We decided not to have kids as a result of the significance of my husband's illness(es). My heart breaks for you because I know how hard it is to sit there & not be able to fix it for him.
I understand how you feel when those very intense feelings are shared with you...as my husband does with me. And not knowing what to do with that information. As the others mentioned, a typical group therapy session won't work...other kids won't relate. They'll try, but they just won't get it. I do think it makes sense to call the psychiatrist to talk about this. Hopefully, you've got one who knows a little about bowel diseases. Maybe talk to him/her about PTSD...as I'm fairly certain that these medical issues have had a traumatic impact on your son. PTSD is one of the anxiety disorders.
Having your colon removed does alter your brain chemistry...that's something they didn't tell my husband all those years ago. He ended up in those groups with others that just don't quite fit. He tried lots of different things. But honestly, we have learned so much from the j-pouch forum. He's learned a lot along the way, but there are still days when he feels just like your 10 year old son. It sounds like you got some great tools to help (I wish my hubby could go to Camp Oasis with your son!
). Anyhow, I just wanted you to know that I understand what you're going through, too.
PS-From an educational perspective, your school district may be able to provide homebound instruction with a certified teacher. We offer it in Missouri, not sure about New York.
Mrs. Sushi