Crohn's poem from a 15 year olds' point of view

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55555jlw
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Date Joined Dec 2008
Total Posts : 103
   Posted 4/4/2009 7:53 PM (GMT -7)   
:-)  
Turning Point
 
I feel I am constantly bringing it up
But it changed my life completely.
The day I was diagnosee wih Crohn's Disease
Was the turning point in my story.
 
Crohn's disease has affected me greatly
Through what I can eat and do.
For a while I was trapped on an emotional roller coaster,
But now I am pulling through.
 
Some cry to God, "Why me?  Why Me?"
And for a while I did too.
It's especially hard when you're so young
And knowing this will never leave you.
 
But this emotional journey
Has brought me closer to my Lord.
I have decided that there must be a reason.
But what is He pushing me towards?
 
I'd like to think that the point of my pain
Is to remind me that it could be worse,
I am lucky.
But perhaps this illness will help me to save many.
 
I believe this was to push me
To pursue a career in medicine
To help so others won't have this pain.
Autoimmune disorders will be history.
 
Corrected by Marie


DX in 2000, (Mild to Moderate)  take Pentasa, Lexapro, Multivitamin AVOID WHEAT AND DAIRY, as well as fried foods.
 
Daughter age 15 dx with Crohn's on 12/22/08 (Moderate to Severe):  Prednisone, Nexium, Pentasa, 6mp, yogurt , teen vitamin
 
 
 

Post Edited (55555jlw) : 4/5/2009 6:33:16 PM (GMT-6)


55555jlw
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Date Joined Dec 2008
Total Posts : 103
   Posted 4/4/2009 7:57 PM (GMT -7)   
I typed this poem in for my daughter. Sorry about the type o's.
Jennifer
DX in 2000, (Mild to Moderate)  take Pentasa, Lexapro, Multivitamin AVOID WHEAT AND DAIRY, as well as fried foods.
 
Daughter age 15 dx with Crohn's on 12/22/08 (Moderate to Severe):  Prednisone, Nexium, Pentasa, 6mp, yogurt , teen vitamin
 
 
 


Nanners
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Date Joined Apr 2005
Total Posts : 14995
   Posted 4/5/2009 7:13 AM (GMT -7)   
That was really good Jennifer. I agree with her so much that God gave me this disease for a reason. I believe it has made me more compassionate and stronger as a person too. Good Job Marie!!!
Gail*Nanners* Co-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.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 4/5/2009 9:25 AM (GMT -7)   
Wonderful! Just remember he will never leave or forsake those who are His. I know that He uses my circumstances to work in me as well as in others. We must be brave and trust that He is doing great works!
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Trigirl
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Date Joined Jan 2006
Total Posts : 768
   Posted 4/5/2009 11:40 AM (GMT -7)   
I enjoyed the poem very much and agree with it whole heartedly. Thanks for sharing your talents with us. God bless.

flowery
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Date Joined Jul 2008
Total Posts : 440
   Posted 4/5/2009 5:27 PM (GMT -7)   
Wow....this bring tears to my eyes. I'm not good with words. Your a remarkable young lady. Thank-you
Flowery
 41 yr old woman with 12 surgerys under my belt. Diagnosed in 2005 CD. Gullbladder taken 2000, Hysterectomy 2005, Back surgery 1998 with herniation L-4, L-5, S-1. Re-section on small intestine 18 inches in 2006. Diagnosed with PTSD in 1999. Been getting kidney stones:( bummer! The good news...finding this website.
                Meds: Imuran 200mg daily, occasional flagyl and cipro, high blood pressure meds, paxil 25 mg, potassium, synthroid...& try to get alot of laughter in.
                         


55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 4/5/2009 5:36 PM (GMT -7)   
Hi, I altered the poem a little. When it was submitted some of my words had been omitted and altered, but now it is in its original form. I'm glad to see that it had such a strong effect on people. Thanks!

Marie
DX in 2000, (Mild to Moderate)  take Pentasa, Lexapro, Multivitamin AVOID WHEAT AND DAIRY, as well as fried foods.
 
Daughter age 15 dx with Crohn's on 12/22/08 (Moderate to Severe):  Prednisone, Nexium, Pentasa, 6mp, yogurt , teen vitamin
 
 
 


73monte
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Date Joined Mar 2007
Total Posts : 1499
   Posted 4/5/2009 6:20 PM (GMT -7)   

Hi Jen and Marie,

Great Job!!! That's really inspiring.  It's wonderful to see someone so young with such strength and faith. 

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 4/6/2009 5:37 AM (GMT -7)   
Tom,
I am very frustrated today. Marie has been compaining about being constantly tired for a couple weeks now- at least. She has lost a few pounds the last few weeks, nothing to be too concerned about yet. Her eyes tell me she is not absorbing all the protein I have been feeding her. I guess all I can do is continue to pray and keep her on a healthy diet until we see the dr this Thursday. She is getting blood work done today just incase the 6 mp might be affecting her negatively.

Guess I am having a weak day- and it is only 8:35 am where I live. Oh dear. I had better find a way to change my outlook or I am in for a long day.
Jennifer
DX in 2000, (Mild to Moderate)  take Pentasa, Lexapro, Multivitamin AVOID WHEAT AND DAIRY, as well as fried foods.
 
Daughter age 15 dx with Crohn's on 12/22/08 (Moderate to Severe):  Prednisone, Nexium, Pentasa, 6mp, yogurt , teen vitamin
 
 
 


cutie
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Date Joined Jan 2009
Total Posts : 80
   Posted 4/6/2009 7:14 AM (GMT -7)   
That was very meaningful!!!!
age 41,diagnosed with CD in 11/07, Rx Pentasa 4000mg and Remicade.


73monte
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Date Joined Mar 2007
Total Posts : 1499
   Posted 4/6/2009 8:06 AM (GMT -7)   

Hi Jen,

I know exactly how you feel. It can be such a rollercoaster ride sometimes. I would really get her iron stores checked on this upcoming bloodwork. That's one of the most common problems for teen girls is ongoing anemia, especially when puberty hits. It could also be her blood sugar is down. Perhaps she is getting too much protein and not enough carbs, which are responsible for energy levels. 

I'm sort of shooting blind here trying to make some suggestions. Her upcoming SBFT will tell you what's going on for sure, and if good news, will give you some reassurance, and your frustration should settle. 

Take a breath. God will be there for you. 

Tom.  


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 4/6/2009 3:18 PM (GMT -7)   
Oh my goodness. Thanks for the suggestions and kind words. In my work I "lightly " counsel people adn often use the analogy of their spirit being like a beautiful glass, full of sparkling water- when worries start, or otherwise bad things happen to bring us down it is like mud slowly filling up that glass replacing the crystal clear clean water. As we pray or cope- handle our problems or put worries in their place, we are sifting or cleansing the muddy water and replacing it with the clean to bring our spirit back to a happy balanced state.

I guess I need ot offer up this worry, cleanse my spirit, and reap the rewards awaiting me. I am just so overwhelmed.

Thaks so much again. I will look at getting Marie more carbs .
Jennifer
DX in 2000, (Mild to Moderate)  take Pentasa, Lexapro, Multivitamin AVOID WHEAT AND DAIRY, as well as fried foods.
 
Daughter age 15 dx with Crohn's on 12/22/08 (Moderate to Severe):  Prednisone, Nexium, Pentasa, 6mp, yogurt , teen vitamin
 
 
 


73monte
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Date Joined Mar 2007
Total Posts : 1499
   Posted 4/6/2009 5:30 PM (GMT -7)   

Jen,

That's a really good analogy, and might I add, you're sounding better already. One more thing that I wanted to mention. You said that Marie had lost a couple of pounds, which as I had indicated could be a result of a low carbohydrate intake as well. Each gram of carbohydrate you injest, retains three times it's weight in water. That's one of the reasons why low carb diets became so popular, since the weight loss seemed so rapid. The trick is mostly water weight is lost. I may be missing the mark here, are you keeping Marie off of too much sugar and starch in her diet? 

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


isergodur
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Date Joined Jan 2009
Total Posts : 831
   Posted 4/6/2009 5:50 PM (GMT -7)   
good poem i liked it very much just how i feel..
24 year old female
Diagonsed with Crohns disease in December 2008..
Medication - Asacol, Remicade, Entocort


55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 4/6/2009 8:41 PM (GMT -7)   
I am saying thank you to all who commented on the poem and liked it on behalf of my daughter, Marie. It was just by chance that she shared the poem with me and I thought it would be great to share it on this forum.

Tom,
I haven't actually been altering her diet at all lately, just letting her choose for herself what she wants to eat. It is funny, but her gut has dictated our dinner for years , and I am just noticing now. She isn't limiting pasta, infact I have prepared it regularly lately which might be why my weight is going up !!!!!! She is just so nauseous and getting more crampy. Her bottom hurts and she admitted to me tonight there was a tiny amount of blood too. I am so glad we are going to the dr on Thursday. I hope she doesn't have to go on prednisone again, but if that is what it takes, then we shall follow orders. I wonder if he will switch her from 6mp to methotrexate. She hates needles, so that will be interesitng. we shall see. Her knees are really bothering her with stairs. Mine do that too, just thought it was my age. Maybe it is due to Crohn's. For as long as I can remember I have an irritable stomach , just use to the discomfort. When my doc asks "on a scale of 1-10" for pain, I can hardly answer because pain and discomfort are just part of being a Crohnie.

I am feeling better, mentally. Thanks for noticing. We have some financial family issues that have made it imperitive that I look for more work. I have done so and found a job in a food industry. It is not what I was looking for, but i will take anything. My pride was a little sore, but helping support our financial needs is what is most important. As you can imagine our medical bills are growing. hubby got a large pay decrease too. I just wonder how I will be an effective "MOM" to 5 kids and work 40+ hrs a week, too. I will make it work. I am a survivor, just grump about it first.

Thanks again for yoru support and comments. Hope Holly and all of you are well.

Jennifer
DX in 2000, (Mild to Moderate)  take Pentasa, Lexapro, Multivitamin AVOID WHEAT AND DAIRY, as well as fried foods.
 
Daughter age 15 dx with Crohn's on 12/22/08 (Moderate to Severe):  Prednisone, Nexium, Pentasa, 6mp, yogurt , teen vitamin
 
 
 


73monte
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Date Joined Mar 2007
Total Posts : 1499
   Posted 4/7/2009 3:33 AM (GMT -7)   

Jen,

I don't know what to say. After reading your post, I could see that you're being tested with more than your share of adversity. No one is unaffected by this financial crunch we are in right now. I really hope that some other opportunities come your way. You're obviously doing the best you can and the Good Lord will certainly reward you for that. Things absolutely must get better for you.

The only other thing I could mention is, I know that 6mp/Imuran, can take about 3-6 months to reach their effectiveness. Perhaps the Doctor will suggest that you wait and see how the medication takes hold. As far as the Nausea, we were told at the outset to take Imuran at bedtime with food, as this seems to be a common side effect, maybe that will help Marie.

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 4/7/2009 8:26 AM (GMT -7)   
Tom,
You are so right on so many fronts. I would like to wait out the 6MP to see if it becomes more effective, it is just so hard to watch your little girl suffer- AS YOU WELL KNOW!!:)
Today we went in for blood tests and she just shook with fear (of needles). I can see her health slipping day by day. Today she broke down in the car because she feels like there is nothing she can eat that she "should" eat for optimum health- that her digestive system can tolerate. I feel helpless, she is beginning to feel hopeless. Neither is good. This "season" is a good time to offer it up, praise for the healing to come. I am not there right now. I use to pride myself on being a solid rock of optimism. As my kids would say, I need to "find my mojo".

Yes, the economy is sparing none. I do feel fortunate that it isn't worse.

Thanks soooooo much again for your compassion, ability to see behind my words into my pain, and for your support.
Take care and God bless,
Jennifer
DX in 2000, (Mild to Moderate)  take Pentasa, Lexapro, Multivitamin AVOID WHEAT AND DAIRY, as well as fried foods.
 
Daughter age 15 dx with Crohn's on 12/22/08 (Moderate to Severe):  Prednisone, Nexium, Pentasa, 6mp, yogurt , teen vitamin
 
 
 


73monte
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Date Joined Mar 2007
Total Posts : 1499
   Posted 4/7/2009 11:04 AM (GMT -7)   

Jen,

It really breaks my heart to hear where you're at right now. I can Totally relate to everything you're saying. There's nothing worse as a parent than to have to sit by feeling "helpless", as your child suffers. 

What concerns me the most is to hear you say "hopeless" though. It concerns me because it's exactly the way I felt at times, and I used that exact word to describe things at some of our low points. We have to be positive and optomistic that there's better days ahead. Marie, (and Holly), have their whole lives ahead of them. There's always going to be hope for better treatment, medications, Doctors etc. As much as I feel as you do, at the same time I can't imagine that these girls will spend the rest of their lives suffering. I just can't believe that this is what God has intended for us. 

I hope this doesn't sound like a motivational speech. I really don't want to sound like that. I used to view myself exactly as you do, solid and on top of things. It's easy when you  have alternatives in front of you. When we sometimes get to the point where you're out of options, that's when it get's tough. I can remeber Robert Schuller saying, "tough times don't last, tough people do". I sincerely hope that this is the case for both of us. 

Tom.

P.S. Just re-reading some of your posts. Please remember to ask about an iron supplement, unfortunately, this too can take several months to reach it's peak effectiveness. Also, if the blood Marie is having is bright red, (Holly has that occasionally as well), I've been told that it's likely an internal hemmoroid, or maybe a mall tear from hard stool. When are you seeing your GI next? Isn't her SBFT coming up?


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 4/7/2009 7:29 PM (GMT -7)   
Yes, sbft is Thursday. I will take a list of things to discuss with him at that time.
Thanks agian for yoru words, wisdom,and hope.

Jen
DX in 2000, (Mild to Moderate)  take Pentasa, Lexapro, Multivitamin AVOID WHEAT AND DAIRY, as well as fried foods.
 
Daughter age 15 dx with Crohn's on 12/22/08 (Moderate to Severe):  Prednisone, Nexium, Pentasa, 6mp, yogurt , teen vitamin
 
 
 


55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 4/9/2009 9:11 PM (GMT -7)   
Tom,
SBFT went well today, no fustulas or strictures. Yahoo!!! Some blood tests came back though and everything looked normal except for her platelet count was 400+. doc wants her checked for Mono as she has been exposed. Her IBD markers were all in check.
She is feeling awful, maybe a virus-- nerves???? Bought her some boost or ensure tonight, can't remember the name. She likes it.
She still has numbness, knees hurt terribly, new skin sensitivity on her back/ Ugh.
Overall today was a great day for answers and renewed hope. HEr doc is moving to another city, a little farther away. She almost cried in his office when he told her.

Jenni
DX in 2000, (Mild to Moderate)  take Pentasa, Lexapro, Multivitamin AVOID WHEAT AND DAIRY, as well as fried foods.
 
Daughter age 15 dx with Crohn's on 12/22/08 (Moderate to Severe):  Prednisone, Nexium, Pentasa, 6mp, yogurt , teen vitamin
 
 
 


73monte
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Date Joined Mar 2007
Total Posts : 1499
   Posted 4/10/2009 4:29 AM (GMT -7)   

Hi Jen,

That's really good news!! Especially no strictures. You certainly have reason for "renewed hope". It seems that her symptoms aren't Crohn's related. I suppose we tend to forget about other viruses, flu bugs and such being so focussed on the disease all of the time. Please continue to post her progress. 

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/12/2009 7:36 AM (GMT -7)   
55555jlw said...
I typed this poem in for my daughter. Sorry about the type o's.
Jennifer

smurf Hi Jenn that was great and my mom always told me that god gave this disease to me for a reason i thought at first why would god make me sick and mom said someday it will come to me and it took a few years but it did i believe it was to make me stronger and it has over the years i would have never made it through those tough times if i was weak i am a fighter a good one god gave me the will to fight to never give up to be strong and what ever life throws my way i am ready for it cause i know i can stand on my own 2 feet,and when i am weak god takes over for me and pulls me through those hard times when i just dont have nothing left in me,he lies beside me and sticks out his arms for more IVs lines so mine can rest and when surgery comes i keep my faith and know that he is at my side holding my hand and keeping a watchfull eye on the surgen helping him save me,i am a big believer in angels god sends them to us when were weak in many differant forms could be a friend when your in a time of need or a needle in the bum for the pain there all his workers helping us be better people ans i know that my angel is always with me where ever i go i feel safe and protected in the presents of god and he always knows the answers to our questions even when we dont think we do that answer were given is the answer of him we always no the right thing to do but knowing we have this power on our sides makes it all the better.Dont ever forget our father lord jesus christ amen. God Bless All Of You Jenn. yeah .
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


Curly9878
Regular Member


Date Joined Apr 2007
Total Posts : 165
   Posted 4/12/2009 5:37 PM (GMT -7)   
remarkable....
28 Yrs
Michigan
Newly diagnosed with Crohns

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