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Update: on my daughter Holly

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Posted 1/24/2009 2:27 AM (GMT 0)

Hi Gail,

Feb 09th is the big day for the SBFT. Thanks for inquiring.

Tom.

Posted 1/24/2009 2:48 AM (GMT 0)

Celey, Julia, and LM,

I'll respond to you guys collectively, because you should get together and start your own practice. All three of you are making great points and really hitting the nail on the head.

LM, to be honest, I really hope that we don't have to resort ho homeschooling. I can very likely see tutoring being necessary though. I really hope that she can get through university without the disease getting in the way. I so hope a "wonderfule life" is ahead. 

Celey, Everything you've pointed out is what I've been worrying about. I'm even getting a bit jealous of other healthy teens now. There are many suggesting counselling, but it's just not something for me. If Holly starts to improve, I will make the turn as well, so we'll see what happens first. 

Julia, You are exactly correct. Holly isn't so much worried about me, but doesn't like to see me down. She already has started not telling me about how she feels, as she knows that it weighs so heavily on me. Fortunatly, she will tell her Mother.  I think she copes fairly well. When she's in pain, she's down. But when she feels well, she doesn't seem to worry.

All of you have had to go through so much. I hope you are doing well. I'm amazed that you've taken the time to offer help. God bless you all.

Tom.

Posted 1/24/2009 3:48 PM (GMT 0)
Tom I am a co-moderator on the Healingwell Anxiety/Panic forum, and I need you to know that I think it is time for you to put your pride aside and get in to see a therapist and possibly get on a anti-depressant. You are doing yourself no favors by this constant anxiety and worry for Holly. I agree with Julia, you could be causing problems for Holly, and I know how much you love her, its quite obvious, and I know you don't want to do that. It could come a time that she even stops telling Mom, because word gets back to you, and she doesn't want you to worry. Holly will one day, and I believe it will be soon, get where she will get back to being that girl you remember. This is a disease that takes a lot of time, patience, and trial and error to see which med or treatment will work best for her. But you can't just keep yourself in this constant state of worry, its not good for YOU.

Right now Tom, I am more concerned with your wellbeing than with Holly's. Because Holly is doing what she is supposed to, and that is getting treatment for her condition. I think you really need to get help for yourself. When your seratonin levels get out of whack due to so much stress and concern, it can make life much harder.

Please take this post in the manner it is sent, which is with great concern and care, and get yourself into the doc.

Hugs to you Tom,
Gail *Nanners*
Posted 1/24/2009 3:53 PM (GMT 0)
Out of curiosity... Why isn't counselling something for you?
Posted 1/24/2009 5:29 PM (GMT 0)
If traditional couseling is something you just won't consider, do you have a spiritual advisor you could talk to?  A priest/rabbi/whoever will have experience in helping people through difficult situations, and prayer and meditation can be helpful in dealing with stress.  I know a lot of us have pushed couseling, but I have to agree with Nanners.  You risk doing real damage to your health by not finding a better way to deal with your worry.  If nothing else, by not taking care of yourself you make it harder to help your daughter.  And I didn't want to be so blunt, but since someone else has already touched on it, your stress could be causing your daugher more stress as well.  I know at times I've really worried about the stress I hear in my mother's voice, and then I start hiding or down playing symptoms.  And I'm an adult.  A kid living at home with her parents is probably going to feel their worry and stress much more acutely. 

Posted 1/25/2009 2:45 AM (GMT 0)

Hi Gail,

I don't know where to start here. I really haven't been able to explain very well to anyone, just how my view of all this is affecting me. I've always looked at things in the very literal sense. I'm a very pragmatic thinker. Maybe it's to a fault. Believe me, it's not a matter of pride that I wouldn't consider counselling, I just know it wouldn't help someone like me. As far as Anti-depressants go, I would absolutely never even consider it. I think both of these options are truly helpful and necessary for some people, but it's just not for me. I really hope Holly can have a good life, and be able to manage this disease. That would be the best therapy for me. Of course, that's goiing to be a long and winding road.

Your concern is very touching, and your advise as usual is very good,but it's not like I want to jump off a bridge or anything. Maybe I will get better with time, who knows. A cure for her will be a cure for me.

By the way, I'm glad to see you back here helping others again. I hope things are going okay for you. I know what it's like. It's very difficult. 

Tom.

Posted 1/25/2009 9:03 AM (GMT 0)
Tom, may I recommend a wonderful book for you and your family?

Building a New Dreak: A family guide to coping with chronic illness and disability

by Janet R. Maurer, M.D. and Patricia D. Strasberg, Ed.D

I think you would all get a lot out of this book. I know I did, when I was at a crisis point with my health. It deals with common emotional responses to diagnoses and flares, and practical ways of managing the limitations that come with illness. It is very inclusive and spends a lot of time discussing how families and friends deal with a loved one's illness too, so I think you might find it handy.

Please do keep hanging in there. You said the road will be a long one, but at least you are walking it. That's a wonderful, tremendous start.

Ivy.
Posted 1/25/2009 2:37 PM (GMT 0)
Tom then I think Ivy6 has a good suggestion. Maybe you can try reading this book to help you. Tom you know that I have had this disease for a long long time. I hope you will believe me when I tell you Holly is going to have some good times in her life. Once she gets on the right meds and finds the right foods for her, you will see your little girl return to the one you remember. As I said before its always a matter of trial and error with this stupid disease.

I finally found the right med for me, I stick pretty strictly to my version of a low residue diet, and I eat on a every 2 hourish schedule for a good part of my day. This is what works to keep my symptoms pretty quiet. Another thing I try hard to keep down is my stress level, so that is very important for Holly too. You know I have had some wonderful things happen in my life, the greatest being becoming a mother and grandmother. I know your worry for Holly, and I understand it. But you still need to tone it down, if not for yourself, then for Holly. She has a chronic illness Tom, and SHE (with your help at this point) will have to learn how best to control her disease as she moves thru life.

I am not saying I think you are going to jump off a bridge or anything like that, but I was thinking that a therapist might be able to help you deal with Holly's illness in a more healthy manner. PS: You are a really good Dad Tom!!!

Sending big hugs to you both.

Gail *Nanners*
Posted 1/26/2009 3:27 AM (GMT 0)

Gail,

Ivy's suggestion is a good one. I will look for that book, it might actually help.

I hope you're right, that Holly will have some good times ahead. I read posts here all the time, of people who are being controlled by the disease and are so down. A girl posted here not long ago, that she felt "disgusting" and had no life at all. 

When I see that this disease is capable of doing this to someone, that's what makes me worry so much for my daughter. That's why I have such a hard time believing as you do, that she will manage the disease.

You're suggestions and advise have really helped alot. I really don't want to just wallow in sorrow, and sink lower each day. I'm feeling pretty good right now about things, as she seems to be doing okay right now. I'm going to try a more positive route, and not let her see my sadness.

Tom

Posted 1/26/2009 9:06 AM (GMT 0)
Tom, you need to remember that we tend to be more severely ill than most Crohn's patients. We are not an accurate sample of the wider Crohn's community. Many of us are on the more unusual medicines, and it is only in an online forum like this that we can touch base with other people who are undergoing similar treatments.

We come here because we are very sick and need more support than we can get in our "real" lives. The people who are not very sick, or have adjusted well, or have adequate support, have less of a need to come here.

We are a visible minority. Keep remembering that there is a less visible majority out there, who can get on with their lives without needing a forum like this one.

Ivy.
Posted 1/26/2009 6:34 PM (GMT 0)

Thank-You Ivy,

I will try to keep this perspective. As you might have guessed, I can't help wondering if Holly won't be in that "visible minority". I know you're probably throwing your arms up right now, but that's why I'm having such difficulty. 

I will give the book you suggested a try. I'm hoping for better days ahead. Time will tell. 

Tom.

Posted 1/26/2009 7:22 PM (GMT 0)
Tom,

As you know from my profile I have lived with this wonderful disease for many years and I watched my Mom struggle with it for years before that. As Ivy said, many on this site come here because they are struggling and need more support, and some of us come here because we have been there, done that and want to show others that this disease doesn't have to be a death sentence. I have lived a pretty great life and done pretty much everything I wanted to do. I may have had to make some small accommodations for my disease but I found a way to do what I wanted. Like when my daughters were playing softball. Rather than just attending their games, I coached their games, because that way, I had the key to the restroom at every field. I didn't have to worry about bathroom access. I was PTO president, but I made sure that some one was Co-President with me, just in case I got sick. Holly will find ways to do what means the most to her, you need to have faith in her and in her doctors. You constantly being worried is only going to cause her more stress and that will just make things worse.

Yes there are post on here everyday from people who are suffering and have a question or an issue that they need help with. But there are also posts from the same people who are telling about going to classes at college, or a funny story about running to the bathroom at work, or lunch meetings at restaurants. You aren't seeing the good because you are so worried about what might come next. Most of the people here are still out there living their lives and making the best of every minute. The odds really are in Holly's favor that the doctors will find the right meds and soon she will be feeling better.

Sending you both best wishes.
Posted 1/27/2009 12:40 AM (GMT 0)

Suzanne,

Thanks for posting a reply, I think the operative word that applies is "faith". Mine has been a bit shaky of late, but I am starting to feel like she just may have a chance of staying on the plus side of this disease. 

I hope, as you say, that the odds are in her favour. I will still worry, I don't think anything is going to change that. Hopefully if she can manage the disease, I can manage my worrying. I do realize as you, (and others), have pointed out, that my worrying will only cause her to have more stress. I'm going to have to watch out for that.

Tom.

Posted 1/29/2009 3:13 AM (GMT 0)

Tom,

What is SBFT?  I read a post that your daughter was having it on Feb. 9th.  How is she doing?  How are you? 

I read another post that stated counseling and meds were not an option for you.  My hsuband is the same way.  I use to feel that way until I actually had a melt down and promised Jesus I would do what I could to  help myself.  The praying, talking about my troubles wiht friends just wasn't enough to improve my state of mind.  I started taking a low dose anti-depressant and felt like a normal functioning, well balanced individual.  All of a sudden I could handle big stuff, little stuff, everything without overreacting, crying, or thinking the worst a million miles a minute.

Hopefully, like you said, when Holly feels a little more well, the worry will be lifted and you will feel better.  But happiness shouldn't be dependent on something- though I sure feel some of your pain with having a sick kid.  Sure puts you out of place mentally.  Dads are their daughters'  HERO. 

God Be with you and yoru family.  May yoru prayers be answered.

Jennifer

Posted 1/29/2009 3:45 AM (GMT 0)

Jennifer,

Thank-You for responding. An SBFT, is a Small bowel follow through. Since Crohn's in the Terminal Ilium, can't really be reached with colonoscopy/endoscopy, the only other diagnostic is this. I'm not an expert, but it's some kind of radiology exam, (x-ray/ct scan). You drink a liquid contrast, then they can see just what's going on. 

As far as counselling or antidepressants. As I have indicated, it just isn't for me. Being Catholic/Christian, I do look for strength and guidance there, but sometimes as you know, there just doesn't seem to be any rhyme or reason to life. I'm sure both of these options have a definite place for some, nothing wrong with choosing that. 

You can likely relate to how I feel, having a young daughter in a similar situation. I certainly hope both of our girls will have bright futures. How has she been doing? Is the Prednisone doing it's job?Keep posting, as I indicated before, there are some great people here willing to offer some excellent advise and support.

Tom.

Posted 1/29/2009 12:51 PM (GMT 0)
Hi Tom Seeing your daughter will soon be going for her SBFT was wandering what kind of prep. she is going to use. I am thinking you have some concerns as to her drinking the barium since you said she is a bit skirmish when it comes to drinking stuff. Any questions you have on the test will be answered if you have any.. lol gail
Posted 1/29/2009 1:57 PM (GMT 0)
Hello Tom,

Adversities are opportunities for us to fully realize our place in creation -- who we are, who we aren't, and who is really in control. It is not in our nature to do this type of examination when life is going perfectly. Christians have absolutely every reason to hope! This forum isn't the place for in-depth discussions of faith, so I wil stop here. My email address is the left-hand icon under my name if you ever want to discuss how faith shapes our thinking and lives.

That said, the adversity your daughter is experiencing could also be a blessing to her. It will get her to think about what is important in our lives (including friends and family) and build strength of character and perseverance. She will be wiser than most her age! And she will find ways and inner strength to live with this disease just as many on this foum have done. So be encouraged for your daughter! For yourself, speaking with a Christian counselor will help you find your own balance.

Take care.
Posted 1/29/2009 2:24 PM (GMT 0)
Just fyi, I have NEVER done a prep for a small bowel follow thru. So hopefully Holly's docs are not telling you to do one. It was always just nothing to eat after midnight. Good luck!
Posted 1/30/2009 2:46 AM (GMT 0)

Gail, (gachrons),(Nanners),

I'm not sure what kind of prep, but I think it was pico salex. She has had this done before, so knows what to expect. I was quite a draining clean out as I recall. The drink for the test was tough for her as well, but she got through it okay. She swears she will never have another endoscopy though.

Posted 1/30/2009 2:53 AM (GMT 0)

Hi FallColors,

You are quite correct and I agree very much about adversity. The fear of course is that the advesity will be so great that any benefit  for our character will be overshadowed by debilitating consequences. I too try to keep my personal beliefs out of this forum. As you said, it's not really the place for those types of questions/discussions. 

Thanks for offering contact by email for a more indepth on things. I just may take you up on it. Are you sure you're open to that? 

Tom.

Posted 1/30/2009 3:11 AM (GMT 0)
I've never taken Pico for a SBFT. Seems unusual.
Posted 1/30/2009 3:51 AM (GMT 0)

Rider Fan,

I have to say, I may have that wrong. My wife is aware of what the exact prep is for that. I'll have to ask her about that. 

Tom.

Posted 1/30/2009 4:01 AM (GMT 0)
Hi Tom,

My email offer is genuine.

As for the SBFT, my experience was different from most. I was very sick from the huge abscess and cellulitis but they needed to do a colonoscopy and SBFT. They did the colonoscopy on a Wednesday morning and the SBFT on Friday. I was weak as a newborn kitten when I started the colonoscopy prep. I hadn't been eating anyway so the prep wasn't hard -- it just left me even weaker! I was massively relieved to find out that there was no clean-out prep for the SBFT. Not that it would have been hard. I was too weak to eat. The barium drink ran right through me. So between the colonoscopy prep and the barium prep, I had sparkling clean intestines for nearly 4 days! Lost weight too, and was weak as a wet noodle for days. Bless my sister for taking care of me!! That barium left me feeling toxic for 2 days. Ick. And then I was told over the phone that I had Crohn's. "Hello. You have Crohn's disease. Have a nice weekend. Oh its your birthday? Happy birthday." That doc was a CD expert and I really appreciated the time she took with me, but pleaaase! Anti-bedside manners! Boo hoo me. I do find it funny now.
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