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Posted 5/23/2009 7:31 PM (GMT 0)
Hi 73Monte,

I can relate to how you feel.  When my daughter was diagnosed with Crohn's in 2000 at the age of 17,  I was very worried that she could not have a normal life.  I kept asking medical professionals at the hospital after she was diagnosed "Can she have a normal life?".  Once home from the hospital I was obsessed with the disease.  I did a lot of research, joined a number of groups and spoke with a number of people.  My daughter took it much better than I did.  She felt the Crohn's was something she had to deal with, but did not look at it as meaning she couldn't have a normal life.  How does your daughter relate to having the disease?  How is she doing now?  I find that when my daughter is feeling well, I feel better, but it is always in the back of my mind.

It is now 9 years since she was diagnosed.  She has graduated from college and is working and living on her own 2,000 miles away from me.  She has been in remission since she had surgery a little over 4 years ago.   However, while i am not as obsessed with the disease as I was when she was first diagnosed and when she had 3 flairs in the 20 months prior to her 2005 surgery, I still worry whenever she is not feeling well.  So there is good quality life after a Crohn's diagnosis.  However, thereis one caveat.  My daughter, unlike her friends and coworkers, has to watch her diet, take medication and go to the doctor regularly.  She can not live as carefree as her friends can.  It upsets me that at 26 she has to worry about health issues, while most 26 year olds, including me when i was her age, didn't. However, most of the time she lives as a normal healthy 26 year old.

Have you joined any groups/message boards for parents of children with IBD?  One I joined that I found very valuable was DragonPack at http://www.dragonpack.com/ibdsupport/parents/

Your daughter is lucky to have a dad like you.

Debbie

Posted 5/23/2009 8:10 PM (GMT 0)
Tom, I am wondering if, perhaps some members have raised the issue of counselling because they are concerned that you seem stuck and they are worried that until you face/process/resolve what is underlying your fixation with "the future" you may not be able to move forward through the stages of grief that will ultimately lead you to acceptance of your daighter's condition and, perhaps, some peace. Because that's sort of the theme that I have picked up from your posts over time. I wonder if you are struggling to accept that your precious child has a disease that will impact her life forever. If your role is anything like the role my husband plays in his daughters' lives, you are her super hero, the one she has turned to all her life to make the world right. Only this is something you can't fix. It's out of your control -- even her response to this disease -- it's out of your control.

The thing is, life is what happens while we are busy planning and worrying and dreaming. Is it possible that all your worrying and anxiety about the future is serving the purpose of distracting you from the reality of today?

Coming to terms with a chronic illness is not easy, and when that illness manifests itself in childhood, it is doubly difficult. For everyone. parents, siblings, friends, caregivers all crowd in on the person who is ill with the best of intentions, but sometimes you just have to allow a child the space to come to grips with it in their time and on their terms. Tough, tough, tough.

So I hope you appreciate that the suggestion for counselling is not meant as a judgement. There are no badges being awarded to those who manage their life crises without turning to professional counsellors (or, for that matter, turning to family and friends). Stoicism is not a virtue. Neither is having gone through counselling a sign of enlightenment. Counselling is merely one of many, many tools people can avail themselves of when they recognize that they are struggling. Sometimes a person is at their strongest when they allow themselves to lean on someone.

I hope you can find the answers you need to give you some peace.
Posted 5/24/2009 2:02 AM (GMT 0)

Well,

I didn't expect so many helpful posts when I got home tonight. I really enjoy the reassuring experiences that some have shared. I know that most still feel that I'm in a bad place mentally in regards to the way I've processed this disease. You have helped me realize that most of my posts revolve around the same questions about this disease I've had since day one.  So perhaps I have to find a way to come to terms with my fixation on what the future will bring for her. If you read "Stef17's" post, she captures how I feel about it all. As much as I realize that worrying about the future won't change it's course, I still worry out of fear for what might happen, which is a logical reaction. I know the ones here that have coped with the unpredictable course of this disease understand all to well what it's all like, but the parents of a child with this have a different level of understanding. I would be coping totally differently if I had this disease. Not that it would be any easier, just different.

I'm starting to get abit long here so I'll shut it down for tonight. This forum is a tremendous help. I really applaud everyone here who takes the time to assist others that are sometimes in terrible conflict and grief. 

Tom.

Posted 5/26/2009 4:58 PM (GMT 0)
Hi Tom

I think that your daughter is lucky to have you to care and I can see that you are trying to understand the illness. It is a difficult illness to understand because everyone seems to have differing symptoms.

I thought I would add my thoughts, I have moderate to severe crohns. I am on a lots of meds and do have some bad times but on the positive side I have a full time job, a loving partner, I socialise and go on holidays and generally live life to the full. There are of course some times in my life when I cannot do so but I also have many good times.

Posted 5/26/2009 5:42 PM (GMT 0)

Like Stef, I don't see any problem with your posts. You are reaching out for answers, and the more info you have the better. As a parent, I understand that from the day a child is born, we worry. We also imagine a future for that child. We hope for the best of everything. And, btw, these are healthy things to do, for ourselves and our kids. 

So, when Crohn's rears its ugly head, we find ourselves struggling to understand what is is, and how it might impact lives. We struggle to re-imagine our child's future. Learning the hard way how dangerous it is to be lulled into a false sense of security, we try to imagine and prepare for best and worst-case scenarios (and some of the latter are truly scarey). We struggle to understand how we will be needed now and in the decades to come.

I, too, think your daughter is lucky to have a fully engaged Dad, looking for answers. How is she doing, now?

Post Edited (njmom) : 5/26/2009 11:50:03 AM (GMT-6)

Posted 5/26/2009 11:40 PM (GMT 0)
Tom, I totally relate to how you are feeling about your daughters future.
My son has health problems of his own. I worry all the time how he will make out when he is older. He has a dream of driving and playing university football. Due to some of his medical problems I always worry that he will not be able to accomplish these two things and it will be very detremental to his emotional well being.
If he is never able to get a licence will a lady really accept him? How will he deal with his meds when he is on his own not having me to remind him? What if he works for a football scholarship and loses it due to his health? Of course he has none of these concerns because he is 12 and still believes that everything will happen as he wants it too. He is not concerned with whether or not he is going to have any restrictions. That is part of being a kid.

I could go on and on. I think the worry you have is totally normal for a parent with chronic health problems.

I am sure you know most of my story, but.... I started having symptoms of Crohn's in my teen years. I have had 2 resections and many years of remission or mild symptoms. Yes I am still struggling right now to regain remission and I will not lie and say it has been easy. But I am still working (after 3 months off ) I have two wonderful children, a great husband.

I don't believe my life would be any better if I did not have this disease.

So keep your head up and try to keep a positive outlook on Holly's future.
Posted 5/27/2009 1:05 AM (GMT 0)

Thanks so much for these supportive posts. I know that the parents here going through what I am understand that I'm really not neurotic or anything (njmom). It's one thing to accept something that's constant and definite, but when you throw unpredictability and uncertainty in the mix, it's a whole new ballgame. The gist of the problem is, the fear of the unknown. What's going to happen tomorrow? Are the med's going to stop working? Will she be able to finish school? Get a job? Get married? etc, etc. 

I know there are many out there that will relate their postive experiences with this disease, but frankly, that doesn't offer up any guarantees for me or anyone else in this boat, as Tanya points out. I'll be trying to stay positive and continue to hope and pray for good things, and who knows. Thanks again for taking the time for this support. I truly appreciate these comments very much. 

Tom.

Posted 5/27/2009 3:50 AM (GMT 0)
Monte, it is possible that Holly's early illness will save her from other problems in the future.

I know that, for me, dealing with severe illness as a teenager put my life into a proper perspective, and I was less willing to waste time or indulge in risk-taking behaviours like my peers. I'd faced *real* danger and valued my body; drinking, drugs and promiscuity simply weren't attractive options for me.

Similarly, I knew how fortunate I was to have achieved a short remission, and how lucky I was to be at uni at all. I didn't waste my uni years: instead of drinking etc, I studied hard, had a fun casual job, performed in plays and musicals... had lots of fun, but it was healthier fun than most other people my age were enjoying. Most young people can afford to be profligate; Holly may well grow up to value her health, time and energy, and become a much more responsible young lady than she might have been had her teen years been more "normal".

Trouble comes to us all, Monte, no matter how loving and involved our parents are. If it wasn't illness it might have been paralysis from a car accident, or unexpected pregnancy, or an abusive relationship, or drug use, or poverty... Holly's trouble is here, now, and ultimately this is a path that she is going to have to walk, herself. You can walk with her and help her plan for various contingencies, but, really, you can do little to change the course of her illness, and worrying will help neither of you.

All the best.

Ivy.
Posted 5/30/2009 8:18 PM (GMT 0)
Ivy, your post makes a lot of sense.

Just one quibble re "you can do little to change the course of her illness." Actually, choices/decisions/actions monte, his wife, his daughter, and their docs have already made, and continue to make, have and are changing the course of the illness, for better or worse.

Posted 5/30/2009 9:13 PM (GMT 0)
Whoa slow the horse down. Tom you might want to just keep an eye on the issues that come up with crohns, but at her age she WILL rebel against any percieved controlling behavior on your part. Natural adolesent development and behavior. At this age she has to figure her way herself (hopefully she will ask you if problems come up).

Do the research that you need to do as a back up and for her FYI if her crohns becomes bad. At some point the tools of discision making need to be something in her skill set. Things have a way of working themselves out. We cannot answer the questions that you have. Anymore then we can answer the question of her safety behind the wheel. All we can do is stack the deck as well as we can in her favor by having knowledge and information handy (i.e. drive a safe car and there is something to be said for defensive driving, but she is not at the maturity level (usually an late teens/early twenties thing for women) for metaphorical for crohns defensive drive strategies, unless something forces her to gain that level, like surgery <yes being ill can also have a regression in maturity results too).
Hopefully you will trust in your own parenting skills in that you gave her the tools she needs to make approprate choices in her own care.

I think you have normal concerns about your child's health, wellbeing, and future. JUST do not say anything about it to her, unless she asks, because at this age it will not be well recieved. :) Ahh ...adolescents!!!!!!!!!!!!!!!
Posted 5/31/2009 2:03 AM (GMT 0)
Ivy and MMMNAVY,

I'm abit surpirsed that I sparked such strong reactions from you both. I think you are under the impression that the sides of me that I'm showing here, I show to my daughter as well. I want to assure you that isn't the case. She knows that I'm a worrier no doubt, but I don't put my worries out on her. I'm not controlling of her at all. I try to inform her at the right times and in the right way, but I have no interest in creating a rebel, or driving her nuts. 

I'm beginning to understand that some of my questions will never be answered. That won't stop me from worrying. It's the first thing that enters my mind upon waking, and the last thing I think about before sleep. Some might even say I'm tormented. I guess that's just the way it is. I appreiciate all the responses here, but please don't recommend couselling anymore. As I stated earlier, I will try to be positive and hope for good things. I have seen some living very well with this disease. I've mentioned a co-worker before whose son was diagnosed about a year before my daughter. He had Crohn's activity throughout his digestive system. He was very ill and had lost so much weight. He went through the usual first treatment of Prednisone for 8 weeks then Pentasa. It's been 3 years and he is thriving. No recurrence and off all meds. I take this is a sign of hope. 

Tom

Posted 5/31/2009 2:29 AM (GMT 0)
Monte, all I can say, again, is the lesson I learnt while caring for my dying mother:

Worrying will not change whether the medicine will work; worrying won't change whether she gets better or not; worrying won't change whether she *wants* to keep fighting this battle. The most that a bystander can do, I think, is help, and advise, and accompany the sick person on her journey. Ultimately, being a reliable, understanding, sympathetic friend and companion to a sick person matters a *lot* more (I think) than having the right answers.

Life is, ultimately, uncontrollable... and unfortunately there are few answers to life's most important questions.
Posted 5/31/2009 2:37 AM (GMT 0)
Tom,
YES! Of course that is a sign of hope. We who are here are usually the worse cases. I feel bad, because I thought it might have been my post the other day that brought your anxiety up about getting married, children, and career. Because with my level of illness it is a question mark, but it is not like I have given up hope. HOPE is a POWERFUL thing, and living in the mind frame of hope is good for you and your family. Worrying about this sort of stuff every single day is not healthy. I do suggest hope for the best and prepare for the worst. So I do wonder what you are doing to prepare for the worse? Could this help you deal with the what if's?

When you use language like "tomented," you have to admit that would make any logical concerned person question your level of anxiety (after all we cannot see your face or read your body language, all we have to go on is your posts, so please do forgive us for suggesting counseling <no I am not suggesting it>).

Reality Check: I have dealt with terminal teenage cancer patients and their families. From that perspective you can see why I think your concern is natural, but your child will probably not die from this and so everything that you are concerned about is just gravy. It can be dealt with either way. It is absolutely doable.
Posted 6/1/2009 1:07 AM (GMT 0)
Ivy and MMMNAVY,

Ivy,

I really admire your fortitude. I would like to know if you've ever been in worrisome situation?

Even though I'm a very pragmatic individual, I still have my limits. I'm well aware of the ineffectiveness of worrying, and know that it won't add a day to my life. That said, as a parent you just plain worry.

MMMNAVY,

It wasn't your post that had me anymore anxious than usual. I'm sure you're right of the unhealthiness of excessive worrying. Perhaps I shouldn't have used the word tormented. It's not like my every waking hour is consumed with worry and fear. I'm functioning normally, going to work, and doing all the normal things. I'm not sure how you've endured dealing with terminal patients, that's impressive. You're likely right that my daughter shouldn't die from this disease, but the fact that it could happen, prevents me from not worrying about that as well. I know that likely sounds extreme to you. I don't know what else to say about that.  As I said, I will continue to hope and pray for the best case scenario. I'd really like to believe that my daughter could have a great life with all the opportunities that she deserves.  Thanks again for trying to ease my mind.

Tom.

Posted 6/1/2009 5:22 AM (GMT 0)
Monte said:

"I really admire your fortitude. I would like to know if you've ever been in worrisome situation?"

Yes, Monte, I have. I have dealt with more "worrisome situations" than the average person of my age, as it happens.

I asked you this some time ago, and I will ask again, have you started to make practical plans to help overcome your concerns about Holly's future - e.g. thinking about college scholarships for unwell people, considering homeschooling, investigating insurance policies, etc? I really do feel that tackling your fears head-on will help you overcome them.

Ivy.
Posted 6/1/2009 3:36 PM (GMT 0)

Tom,

In case you missed it you are getting advice from two women who are living the "worries" that you described for your daughter, and we are doing it without alot of family support because our parents died at young ages. 

Navy

P.S.  I know you do not like the idea of therapy, but out of concern for your daughter I do have a question would you allow your daughter to get therapy if she wants it? 

Therapy does not mean that there is something wrong with someone, it just means that they might need someone that isn't involved in the situation to help them thru life experiences.  Often those that practice medical therapy (depression and/or anxiety due to medical illness) have been thru the situation themselves and have learn how to successfully deal with it.


Posted 6/1/2009 4:18 PM (GMT 0)
73 Monte...I am a bit older...but my father still is a rock to me...He so wants to help, make it all go away, but he cannot. I see the pain that this brings him, that he cannot make it all go away. Both of us suffer from guilt, he because he cannot make it go away, and me, because I cannot do this for him...

I guess what I am saying...It is great and wonderful to have a rock...but, children (be they 1 or 80) are very adept at picking up their parents emotions, even if they(the parent) try to hide it. I have a too good memory of childhood and I've been a teacher too, and children, though they may seem to be caught up in their own drama, will pick up on tones of voice, nuance in the expression, change in body language... EVERYTHING...yes, everything! At times, a person can read more into them than what was intended...

Please understand, I don't think that you are overreacting, doing anything wrong, etc...it is a great comfort to have an understanding parent...I don't know what I would do without my dad...just also know, she probably also sees the anxiety too...
Posted 6/1/2009 6:51 PM (GMT 0)
Monte,

I can certainly understand where you are coming from in your posts. It has only been just a little over 3 months since my daughter's Crohn's diagnosis and I face some of the same concerns and worries you do. I think of how this will affect her in college, her insurance down the road, her social life. My daughter seems to be reacting the same way yours has in that she doesn't want to know more about the disease at this time. She has asked a few questions, but overall she doesn't do the research. It's difficult to try and refrain from making CD a constant discussion between us. Right now we have been spending a lot of time trying to get this under control, but I don't want it to consume her life. It is a delicate balance. I cannot offer anymore advice than those here. I think they have all contributed something you can take away. I know that I am always talking to her about taking it day by day and not letting this disease dictate her life. There is no other option. Just know that there are others who can relate. It's difficult when you are making decisions that can seriously affect a child and they aren't quite old enough to be involved completely. It's one thing when it is your body that will receive the treatment, but it can seem overwhelming when it is your child's. Keep up with the research and know that your daughter will take on your strength and courage. Fortunately for me, my daughter is very mature and strong for her age. This site is by far the best out there.
Posted 6/2/2009 2:10 AM (GMT 0)
MMMNAVY,

I'm sorry for what you and Ivy have gone through. It must have been especially difficult without family support. 

As far as the therapy part, I really can't get over how often this is suggested, initially repeatedly for me, but now for my daughter. I wouldn't stand in the way of that if she expressed a desire to talk to someone. I can almost guarantee that she would never be receptive to that at all. 

Also, I know that you've likely been through alot with this disease and other things in life. I want to assure you though that I would be handling this totally differently if it was happening to me instead of her. I can't emphasis enough what  a different ordeal it is when something is wrong with your child. 

Tom.

Posted 6/2/2009 2:15 AM (GMT 0)
Becoming undone,

Thanks for your reply. It's sound advice, and I really try to pay careful attention and not show my anxiety. She doesn't need to see me worrying as it would make her think that there is something to worry about. I don't want her to live in fear of how this disease will evolve. Thanks for the advice. 

Tom.

Posted 6/2/2009 2:18 AM (GMT 0)
itainteasy,

As your namesake states, it certainly "aint easy". I know as a parent you fully understand the concern for your childs well being. Hopefully your daughter is doing well. Thanks for responding.

Posted 6/2/2009 2:37 AM (GMT 0)
Tom,
Please go back and reread my post. I just wanted to make sure that you would allow her to go if she wanted too. I NEVER suggested it for her. I just wanted to make sure that resourse was available if she wanted it, and that you would not stand in her way of getting it IF (and that is a big IF) she wanted it.
Forgive us if we are concerned about you and your family, because you have used some pretty clinical level of language (i.e. first thing in the morning and last thing at night, tormented, etc) and we want the best outcome for all involved.
Last, assume nothing.
Navy
Posted 6/2/2009 2:48 AM (GMT 0)
You know, I have been thinking about this more and more lately, and I think the biggest concern for me (and I would assume for a lot of young people in my position) is making far away plans. I really want to do a four week environmental studies program on the Golden Coast in Australia next summer for example, but you have to apply months in advance for the program and scholarships. And then there is the nonrefundable plane ticket, setting up a plan for access to medicine and medical care in case of an emergency, food you can eat, etc. etc. all with the risk of having some serious problems to make all that work simply fruitless efforts.
That's what I want to know how to deal with....I guess I'll let you know in the months to come.
Posted 6/2/2009 3:01 AM (GMT 0)
LMills, I go to a large state university and they have insurance for all that (actually they insist that we have travel insurance in case any of those things happen, even to travel to the next state let alone traveling for a semester overseas). So do not give up, just make sure you have darn good insurance.
Posted 6/2/2009 3:21 AM (GMT 0)

73monte said...
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.

Good Evening Monte that is a real easy question to answer I think about it everyday of my life,were is this disease going to take me now how much more can my body handle,looking in the future is down right scary how ever that is were we are all heading, anyway there is no changing that but the way I look at it is this I have been sick now for 19 years or so and they were really bad sometimes I wonder how I'm still here but my gram always said dear if your sick alot as a child when you get older you will be fit as afiddle and I'm living on every word with a full heart I know that sounds corny but we can't let this disease scare us that much that we are afraid to live to our golden years travel to exotic places swim in blue waters and just live life people without disease live life the same as we do 1 day at a time.Jenn smilewinkgrin smilewinkgrin smilewinkgrin

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