Crohn's/long term outlook?

Haven't posted in a while. While reflecting on this disease of late. I tried to get an idea of what would be the biggest concern about the future with this disease. I may have made the odd similar post in the past/not quite sure. 

THe thing that seems the most worrisome for me is, the liklihood of the disease continuing on a pattern of progression, complications and permanent damage. I worry for my daughter that she will not have any quality of life well into her adult years. I really wish I could get off of that train of thought.

I have been told here (many a time actually), that most here present the most severe cases, and that may not be typical for most afflicted.

Is there others that have the feeling/outlook that I have? I suppose it boils down to fear of uncertainty. I find that very tough to cope with.

Hi Rider Fan,

Counselling has been suggested to me here before. ( Do I really sound that bad?). I may have indicated prior that counselling is just not for me. I'm sure it works for some and I'm not knocking it. For me, it's the answers that I can't get that cause my anxiety. Counselling is not going to give me the answers I would like. Some may say that the answers I would like to get are unrealistic and that I need to be more realistic. For me I would just like to continue to get a better grasp on the understanding of this disease. Sometimes i read some just awful stories here and I start to worry. Then other times I read some good things and feel more postive. I guess I just don't know what to think about it all at times. 

Tom.

I'm always afraid to be honest...I don't know how long the good moments will last. So, I have no security when it comes to a job, the stability of my relationships, getting through school, or planning for the life ahead of me in general because I have no idea what life holds in store.
I know that this can be said of anyone, but it's a different story when you cannot even be guaranteed your health.

The best you can do is plan for as much as you possibly can. I think it's a good habit for people in our shoes to develop. For instance, a few months back I didn't know how long I would be under my father's insurance pending his return home so I looked into Tenncare, medicaid, medication assistance programs, state financial assistance programs, school insurance, and so forth. He's come home now so my insurance will not be valid for much longer, but all the research and planning I did will surely come to good use now that I need it and help keep what would have been a much more stressful ordeal at bay and in check.

Point being, it's so, so frightening sometimes, and it's possible that things can get worse and worse...but a positive attitude and responsible planning can help counter the uncertainty we have to deal with every day. A good support system helps too. There are days I feel so low, but having someone around to offer kind words a least helps mitigate the harsh reality I, like so many others, have to deal with.

I was dx'd when I was 16 years old and spent the next 5 years trying to get everything under control. In that time I was able to finish high school and actually do 3 years of college. This Fall will make 20 years since my dx and in that time I have been on quite a roller coaster, BUT... I have been able to get a college degree, spend 1 & 1/2 years doing missionary work (in Canada - no 3rd world countries for these guts! :) but still...) I've found a wonderful husband who takes care of me when I'm sick and can handle this disease and all the meds. He even gives me my Humira shots. I also just had my 3rd child. While there have been plenty of struggles, I would say that my life is awesome!

I know you are scared. Not knowing what lies ahead is scary, but I would tell you that even though your daughter will have some hard struggles, she CAN have a wonderful life. She will learn to make adjustments where needed and you can be her biggest supporter. You can remind her that her life is what she makes it, even though she has this illness to deal with. The good news is that there are new and better treatments all the time. She WILL make it. Keep your chin up, dad.

Thanks to everyone that replied.

BOY oh BOY.......I really have to reassess. Everytime I post it seems I come off like a loon. I know that it seems like I'm depressed and down and negative etc. I'm actually a very positive person. It just never shows here. Mike really says it all, "For some this disease destroys their life, and for others just a pain". My reaction to it all to me is quite logical. I'm somewhat at a loss because I don't know which way it's going to be for my kid. I hope you all don't think I'm a basket case. THis isn't about me, I'm not looking for sympathy or pity. I'm just a regular Dad that's worried. 

Tom.

I also think you are a very caring father. However, having had grown up as a sick teenager with a worried and anxious mother (I was diagnosed with UC back then), I picked up on those feelings and they in turn made me feel bad for being sick. My mom went to counseling, after having the same concerns you did, and we even went together, and it really helped us learn to deal with it. All she could focus on were the worst case scenarios with UC, and therapy helped her focus on the present and not always worry about the future - to take it one day at a time. It did not give us the answers we wanted, but it helped us accept things and not live in fear. Our counseling did not require medications or anything, but it really helped. I would highly recommend it for you and/or your daughter. However, if you go in there with a negative attitude that it won't help you, it probably won't.

I've mentioned this before, but my brother who had severe Crohn's growing up has been hospital stay free for the past 5 years, he graduated college and graduate school, he has a stable job, and is getting married. He is only 24. He's doing amazingly well, and part of that reason is learning how to cope with it and function with this disease (the remicade has also played a huge role in that).

Good luck with everything.

My GI doctor has always told me that crohn's patients tend to be very driven, and I'm no exception. The stress of nursing school has done terrible things for my crohn's, but with my doctors support and my parents support I have gotten through it. I always fear that I won't be able to take the stress of working 3 12 hour shifts in a row at the hospital, coming home to family, getting the bills paid, ect. But I've learned that what doesn't kill you only makes you stronger. I could look at what Crohn's disease has taken away from me, but theres so much more that it has given me, that I wouldn't take back a minute. I know what I want out of life, I know how to be assertive, how to take responsibility with my own health care... managing prescriptions, insurance, doctor visits. Its given me such compassion towards the patients I take care of. Its honestly made me a better, stronger person. Although Crohn's is hard disease to live with, and the predictability is about non existent, realize that your daughter will be okay. She'll make it through, and she'll be a hell of alot stronger than those kids that have no disease at her age. And then you'll smile when she's at the top of the world and feel like the best parent ever! Trust me.

I don't think you're a loon Tom. I just know the feelings of anxiety very well and can really see my thinking in your messages sometimes when I'm in a bad frame of mind. That's all...

Tom, you have been given some really sound advice by our wonderfully insightful members. I would really like you think about the future in some other ways. You worry alot about your daughter's future, how this disease will impact her life. How involved is your daughter in the discussions about treatment options? She's 15 or 16 years old now, right? In a couple years, she will be of legal age and you will only be able to be involved in these decisions if she allows you to be. I hope the engery you put into researching options is equal to the energy you give in getting her involved in her health care. I think it's important that your daughter understand and be involved in her treatment so she can make good decisions later in life and rely on her father for help during the rough patches.

The reason I say this is because of my friend. She was very ill as a teenager and her mother hovered, worried, and dictated her life and treatment with her illness at the forefront. She eventually got well, went to college, married and had children. She developed breast cancer last year at age 35. She has not told her parents that she had cancer, had a masectomy, and radiation. She was afraid that once her mother learned of her cancer that her mother would smother her as she did when she was a teen. As a mother, I would be horrified to learn that my adult child had to face such a terrifying time without me to be there for support.

I am not implying that this is what will happen with your daughter because my friend's situation is a very extreme example. However, as others have told you, your anxieties can easily be picked up by your daughter. It's a fine line we have to walk during the teen years.

You are not a loon. And some of your posts make for some really wonderful discussions about the impact of chronic disease on one's life. I am so impressed with our members thoughtful and insightful postings. I think that is one reason we have such a great community here.

Tom,

I think that the fact that your daughter has no interest in learning about the disease and her treatment options may play a much bigger role in her long term outcome than anything you can do. In a few years, she will be out on her own, either making all of her own medical choices or away at college. If she doesn't understand what is going on, how can she be expected to make good choices for herself when everyone around her can do as they like. My daughter just spent her first year in a dorm. She doesn't have CD, but she does show some of the same type of symptoms I had at her age. She had to learn to navigate the health care system at college and the dinning halls. Everyone around her was eating junk food, or trying radical diet plans, it took my daughter the whole first semester to figure out what she could and couldn't eat so that she didn't have daily belly aches, and she doesn't have CD! Your daughters' long term outlook is going to be a lot better if she becomes actively involved and knowledgeable about this disease. You can not be there for her to make all of her choices for the rest of her life.

Also, I think that some of your worry is because you actually have SOMETHING to worry about. As parents of teenagers, we worry every time they walk out the door. But you actually HAVE an enemy to think about, focus on, research, and stress over. However, the reality is, no one knows what CD will bring. All the research in the world won't answer your questions, no doctor can tell you "this is the path that her disease will follow". CD, is just like life, you and she will just have to take it as it comes. Give her the tools to handle it, and trust her to do the best that she can.

Tom, not to beat this dead horse to death, but I don't sense any negativity in your posts at all. None. I only see the true concern that any parent has for their child who is dealing with something serious. I don't think you need counseling. :) I think you're getting it here. :) You're doing exactly what you should - talking to other people who live with the disease and seeing how they cope. You are a great dad to want to be involved in a helpful way. Your daughter has a great champion in you. (P.S. this was not an obligatory pat on the back). :)

Hey tom, I have a couple things for you. One is, it is so scary to be a parent when things go wrong! my darling young adult son had a run-in with the law a few months ago. not the same as a chronic illness, but the fear for the future nearly killed me. things are going well now (for today, anyway!) but the anxiety around fears for a kid is powerful stuff, and reasonably so. however, that doesn't mean that therapy can't be helpful and if the time comes one feels he or she can't quite cope with life, it is manditory.

my other thought is, long-term this disease can bring almost anything. I have met several people who get their health under control and after a rough year or two are fine. some on meds, some not, but the future can really be ok. I was one of the lucky ones who found relief from surgery and dietary changes and am doing well enough. and yes, those who feel fine aren't here. I am rarely here, myself. but for a couple years, HW saved my life and I come here when I want to share some good news. 

take care. yp

I think I said that wrong, Nanners. I am here, too, feeling well, because I love this place. yp