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Crohn's Disease Forum » Parents of Kids with IBD » Counting our blessings


07-24-2014, 09:46 AM   #1
kimmidwife
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Counting our blessings

I was sitting here this morning sad and angry at this stupid Crohn's disease and how unfair it is that my girl never feels well. Her Crohn's is acting up again. She is suffering with this gastroparesis and it seems like there is no end in sight. Then I went on Facebook and I see my friend whose two children have a genetic illness that unless they find better treatments (which hopefully they are on the verge of a breakthrough) means they won't live longer then their 20's and I think what am I complaining about?
So I decided to start this thread to give us all a chance to say what we are thinking and feeling and what gives us hope for the future for our children.
What gives me hope for the future for my daughter?
First of all, all of the adults on here with Crohn's that were diagnosed as children give me hope that my daughter will grow up and be able to have a normal life like they do.
Secondly, when I hear of others whose kids are growing up and leaving home and going to college that makes me feel hopeful for the future.
Thirdly, as bad as I know we have it I know there are others out there with worse diagnoses and fighting worse battles then we are and it makes me grateful for my battles and hopeful for all of us fighting battles that medical care will continue to improve and cures will continue to be found for all illnesses!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
07-24-2014, 10:26 AM   #2
Patricia56
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The face of treatment for CD has changed dramatically in the past 40 years. I hope for more dramatic changes in the next 40 years.

I am grateful to have a choice of treatments. There could be no treatments or only life-extending ones with terrible side effects as with many cancers.
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Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
07-24-2014, 03:35 PM   #3
CrohnsKidMom
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I feel SO blessed, even in spite of my son's Crohn's. My son is in remission, and although there are bumps in his journey, he is doing well. I feel like all our children will be such an inspiration to others. My heart goes out to those who are going through a struggle with this disease right now. I am thankful to have a great children's' hospital and GI, and for our healthcare system (although not perfect). I feel blessed to be on this forum, as I have found so much help and support here. You are all so knowledgeable, and I feel so blessed to benefit from from all that knowledge. I only hope I can be of some help to others someday, as you all have been to me. I would be amiss not to give credit to God for all my blessings, so my biggest thanks goes to Him. My hope for the future comes from Him. Excellent thread, Kim!
07-25-2014, 03:28 PM   #4
Jenn
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Camp Oasis. My son just got back from his 2nd trip there. It amazes me.

edit Jul 30: ooooh, I am SO angry. Just got an email that CCFA is now CHARGING for campers. Seems they've lost their way. All good things.... huh?
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Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (15mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections

Last edited by Jenn; 07-30-2014 at 05:48 PM.
07-25-2014, 10:09 PM   #5
DanceMom
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I'm grateful for our fabulous medical team and hospital. They gave me hope from the first time we walked in the door. Now that we seem to have an accurate diagnosis I'm very hopeful that with the proper treatment things will really turn around for A. I'd love to be at a place where we forget she has an illness at all.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
07-26-2014, 06:58 AM   #6
DustyKat
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Fab thread Kim.

My blessings?
  1. That my children were born when they were as in a different time Crohn’s would have meant a death sentence for them. What goes hand in hand with that is the science and medicine that has given them the life they now have and will continue to have into the future. I am eternally grateful to those that make IBD their choice in life to research and treat.
  2. This forum. What a an absolute godsend it is.
  3. The technology that surrounds us so that we can learn, research and question and in doing so be the best possible advocates we can for our kids.
  4. A brilliant GI and GP that are more than willingly to listen to us and work with us.
  5. For all its quibbles and quirks, universal health care.
  6. That my children, though their journey’s were difficult at the outset, have responded well to their surgeries and in doing so may give hope and succour to others.

Dusty.
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Mum of 2 kids with Crohn's.
07-28-2014, 10:53 AM   #7
Momtotwo
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Great idea. I am grateful for the strangers online who have guided, informed and supported me on this new journey.

I am grateful for good health insurance as we would be homeless without it.

I am grateful for my sweet boy who deserves a much different life than one with Crohn's yet goes to his appointments with a smile and good attitude and doesn't have the anger I carry around.
08-03-2014, 07:23 PM   #8
SupportiveMom
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I am grateful for this forum, the people to offer advice, or just sometimes support.

I am grateful my daughter and I are so close and she shares with me sometimes more things than I want to hear. I believe it is because of her Crohn's and the hospital stays we have had with me staying there with her one on one that has helped to foster this closeness.

I am grateful I have learned who I can truly count on in times of need. I am especially grateful for having a sister in law who is a nurse and a brother going through med school that still take the time to explain simple things like why crp levels respond in certain ways and help me understand and remember things I probably learned in High school that I forgot like red & white blood cell count.

I am EXTREMELY grateful for universal health care and that I have never had to determine how I pay a hospital bill and put food on the table.

I am grateful for finally being part of the local IBD chapter. It might just be for adults but I have faith it can grow for kids too.
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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
ibdsupportivmom.wordpress.com ☆
08-03-2014, 09:30 PM   #9
Farmwife
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Good idea Kim. Right now I need to think on the blessings.

1- I'm blessed to have a great medical team at home that treat Grace like a princess.
2- That theirs formula that my child can survive on. If she had been born a few decades ago she would not have a very good prognosis.
3- This forum and internet to learn and gain knowledge about this disease.

4- And the most important.....
A strong faith in something bigger than myself. Praise God!
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
08-04-2014, 07:06 AM   #10
Pilgrim
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My husband and I were talking about this yesterday. That things can seem so tough right now, but we may well look back on this time and think, "I wish we could have seen how easy it was for us then."

-Grateful that little Hannah has a lot of siblings to cheer her up and keep her fighting (and fighting, and fighting, LOL, if she's not too tired!)

-Thankful that I can learn about this in little increments. That we haven't had to deal with an emergency right away as so many of you have had to do.
__________________
Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
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