Crohn's and the Internet?

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73monte
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Date Joined Mar 2007
Total Posts : 1497
   Posted 12/30/2008 8:36 PM (GMT -7)   
Last night I did what I really try to avoid doing. I got on the internet late at night and began searching for answers/hope etc. for my daughters current Crohn's dilemma. I usually avoid that because I seem to only ever find bad news, and after a couple of hours of surfing the web, I was so depressed I couldn't sleep. I don't want to sound dramatic, or like a raving loon, but my constant quest for answers and peace of mind occasionally get the better of me. Does anyone else ever make this mistake? I'm the real analytical pragmatic type, I usually thrive on definites and logical order. Unfortunately, as everyone here knows, this disease is the antithesis of that.
I've seen many here post a bit of a rant after a bad day, and I'm chalking mine up to that. I know now that last night I just wanted to read some success stories. I wanted to find some good news, and that there's a real possibility that my daughter will do well and has a chance against this disease. I ended up finding alot of the opposite. I'm sure there are some here that have followed some of my recent posts. I hope you don't think that I'm coming unglued or anything, believe me I just hit a low point. Tomorrow, I'll try to get more positive about things, and hope that the meds and treatment will be successful. Sorry for venting. 
Tom.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


LMills
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Date Joined Apr 2008
Total Posts : 1753
   Posted 12/30/2008 8:57 PM (GMT -7)   
You're not wrong to be researching. Indeed, I think it's absolutely vital in your daughter getting better. The only thing I can say, and is obvious to anyone, is that life is difficult but not impossible and that we can cope with the hardships given to us until they simply 'are' so to speak...
Your daughter can get better...I used to think I may never, but along the way I've seen a lot of improvement in myself. These improvements may be small but they do exist and I think that has to count for quite a bit. Of course we can't be cured, but we can still lead happy and productive lives.
Honestly, I am genuinely terrified at what kind of person I would be had I never been diagnosed with this disease. It's made me a better and stronger person as well as deeply compassionate for others instead of outwardly so for the sake of shallow and false civility. It gave me a sense of happiness and humanity I would never otherwise have known.
It may be terrible but it's also great, and I have faith that your daughter can still have a wonderful life in spite of it all. Especially with a parent that worries and cares as much as you. She's really lucky :)
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 12/31/2008 3:28 AM (GMT -7)   
Hi Tom I feel your sense of longing and yes we all do the same thing searching and hoping but in our search for knowledge and the good we sometimes come across things that help ,not immediately but at some time. How is your daughter doing any improvements lately?Anything in particular you are looking for I went surfing this week and found a good site that I posted where I can listen to Dr.'s and other specialist in the field of crohn's talk about different subjects pertaining to crohn's. I know you will get back in to a better mind set .It is good sometimes just to talk it out .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Wolfie40
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Date Joined Dec 2008
Total Posts : 947
   Posted 12/31/2008 4:57 AM (GMT -7)   
I do the same, I look for some bright spots and only find the negative.There are positives, you just need to keep looking.
You say she has it in the TI? How bad is it?
Mine is there also.
Ask all the questions you want, we are all here to help and to also help ourselves.

Best wishes for your daughter..

Wolfie

Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 12/31/2008 5:39 AM (GMT -7)   
It's easy to get scared by all the stuff that could happen because of this disease... I mean, I've freaked out on several occasions from what I've read... But you also need to remember that some of these things that can happen with Crohn's may not happen to a certain individual... It's just something you need to take one day at a time... I know it's difficult, but there isn't much else we can do...

At any rate, I have read some nice stories on the net about people who have Crohn's... There was this one about this 12 year old who was on a baseball team who had Crohn's... but despite it all, he still managed to play and even helped his team win... And his team were all very good and caring towards him...

It was a very heart-warming story... I wish I could remember where it was...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1497
   Posted 12/31/2008 6:47 AM (GMT -7)   

Thanks everyone for the replies,

After re-reading this morning I feel I had a bit of sorry for myself moment. You guys are right, in that one has to be positive and hopeful. Todays another day, and I'll try again. 

As far as her current status, as some know, she's still recuperating from the abscess/fistula. Taking Flagyl for a few more weeks, and Prednisone for the inflammation. The hope is that the fistula will heal of course. How bad is her Crohn's?,(Wolfie), is a question I've had since day one. When diagnosed, she had alot of stricture, but no scarring. She had almost 2 yrs. of remission on Pentasa. This time, they say there is quite alot of inflammation. Won't know what the status is until she has a SBFT in early February. She is suppose to start Imuran soon, but we're still waiting blood test results, as she hasn't had the Chicken Pox. Apparently thats a problem. If she has immunity to Chicken Pox, she'll start the Imuran, if not, she'll have to have the vaccine first.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/31/2008 10:00 AM (GMT -7)   
Tom,

First off take a breathe buddy! Your daughter will have a life with Crohns. I have had this disease for over 33 years and have enjoyed many good times as well as a few rough times. But she will learn what she has to do to try to keep herself healthy. It is always the most difficult when first diagnosed. It just seems to take the longest to figure out what works and what doesn't. I was diagnosed at 18 and am now 51. I have 3 grown daughters, 5 grandbabies, been at the same job for almost 20 years, and married to the most wonderful man in the world. I wanted you to see that it is possible to have Crohns and still enjoy life as much as possible. God willing in her lifetime their will be a cure, but until then you will have to live thru these rough times, but good times will be ahead too. Right now, she is sick and its difficult for you to watch her go thru it. But rest assured when they find the right treatment, which at times seems to be forever, she will be back to her normal again soon. I agree with the some of the above, she is very lucky to have a Dad like you on her side:) (((BUG HUGS TO YOU))).
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 12/31/2008 10:17 AM (GMT -7)   
See? Isn't Nanners an inspiration? :D
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/31/2008 10:19 AM (GMT -7)   
I agree with Celey. I'll be happy if I have even half the life Nanners has :)
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1497
   Posted 12/31/2008 11:59 AM (GMT -7)   

Yes, Nanners is definitely an inspiration. She also makes alot of sense. In a nutshell, I find it difficult being positive when faced with uncertainty.  But, I'm going to take a breath, and try harder. Many Thanks.

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/31/2008 6:56 PM (GMT -7)   
Tom I am just thankful that I am the sick one, not one of my kids or grandkids. I am sure like anyother caring parent, you would wish it was you not her. I know my sweet mama did, but like you are, she took really good care of me. I remember when first diagnosed they put me on a really strict diet because I was so sick. She had to make special food just for me, and fix something different for my siblings. We still talk about those days, and she always tells me how glad she is that I never got as sick as I did when first diagnosed. So hopefully this too will pass soon.

Hugs DAD!!!
Gail*Nanners*
Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1497
   Posted 12/31/2008 8:27 PM (GMT -7)   

Thanks Gail,

You say it all in your first sentence, and I'm sure many of the parents here would agree. It's tough watching one of your children suffer when you're helpless to do anything about it. I'm by no means trying to insinuate that it's worse than anyone elses personal battle, because it's certainly not. It must have been so much tougher for you when first diagnosed, especially with the limited treatment options. Did they even know what to do? 

I as well hope this passes. I sure hope 2009 will be much better for everyone here. 


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.

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