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02-12-2013, 07:16 PM   #1
Kimberly1967
 
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Join Date: Feb 2013
Location: Egg Harbor Township, New Jersey
My Success Story

Hello~

Just joined this forum today hoping to also provide hope to other's with Crohn's disease as I have been in remission for 20 years as of March 12th,2013!!

I am a 45 year old married female with three children, ages 10-18. I have been married for 19 years (yesterday was my Anniversary ~ I spent it prepping for my colonoscopy today, lol). I was very sick in the late 80's while I was in college with poor doctors in my area who failed to diagnose me in a timely way. Many chalked my illness up to stress and one doctor even threw me out of his office due to my "hysteria" and told me not to come back "until I pulled myself together". Two weeks prior to my major hospitalization, I was sent home from a "local" ER after the doc did a rectal exam and told me I was OK. They tried to sue me for the bill. Needless to say they lost and were lucky I didn't return the favor by suing them!!

I did complete college but became very ill and finally saw a doctor at Presbyterian Hospital in Philadelphia who saved my life. His name was Dr. Frost. Unfortunately, it was late in the game and I needed surgery. I was admitted on 2/28/93 and my resection was scheduled on 3/12/93. The next day was a horrible blizzard in Philadelphia and he couldn't get there to see me but called me routinely and checked in with the overworked nurses to keep track of my progress. I had an ileocecal resection with an appendectomy (why not, it was attached?). I was released days later. I had been engaged in December 1992 and went home to try to resume a normal life and plan my wedding. I was weaned off of prednisone rather quickly (probably too fast) and was placed on Asacol every day. I remain in remission to this day. I continued taking the Asacol but eventually switched to Pentasa when it was released. I remained on Pentasa through the birth of my second child in 1996 and have been off of all meds since then - 16 years!!!

I would like to say I have some miracle plan for all of you to help you achieve and maintain remission - however, I do not. I can only tell you some important decisions I have made throughout my illness:

1.) Eliminate as much stress in your life as possible.
You're saying "yeah, right, what planet do you live on???!! But seriously, I maintained remission through my marriage, 4 pregnancies (I lost one child early on and it was not related to my illness or meds), raising my children, career choices, and changes, a series of serious illnesses for my dad and my subsequent care taking, and a host of other "normal" human stresses. The trick is to prioritize and realize your capabilities. You are no good to others if you are not healthy.

2.) Find a doctor you have faith in.
In my case, I had a doctor I loved like a grandfather. He ended up moving to Maine and actually worked at the Pentagon and was there on 911. He saved many lives that day. We have lost touch but I think of him almost daily and thank God for placing him in my life. I also had a great surgeon. After my doctor relocated I remained at Presbyterian for a while but really didn't like the doctor that much. Sometime in the 90's I transferred to Jefferson and started treating with one of my original doctors partners. They had left for Jefferson after Penn took over Presby. It was the best move I have ever made. He is the Director of the GI Division and has kept me and a family member on. Again, I am very grateful that he has kept me on.

3.) Continue regular follow-up no matter what.
Even when you feel well you have to go see your doc for lots of reasons. If nothing else, you will continue to build a relationship and this is sooooo important with ANY chronic illness. I have yearly exams and colonoscopies every 5 years. I had my most recent today and am thrilled to tell you all looked well. I hate them but I do it anyway. When I have a problem and call the office, I ALWAYS hear back from them promptly because they know me so well that they realize I would never call if it wasn't a valid concern or problem.

4.) Watch your diet and listen to your body.
There are lots of things I can no longer eat. It has been a slow and steady process of elimination over the course of my life. Ironically, I am overweight at 5'4" and 190 lbs. I can eat all of the junk food carbs I want but I am lactose intolerant and have difficulty digesting meat (I eat no read meat at all except ground beef occasionally), I can't have any caffeine either. There are lots of things I love but don't touch them because I know better. It's not worth it, I'll eat a brownie instead.

I feel pretty crappy right now. The scope today was difficult and I am not feeling so hot. I was perusing the internet looking for others to explain this because I have never experienced it in all of my six colonoscopies. Usually I feel great and I am starving and eat whatever I want. Today I was nauseous and have fire butt diarrhea and no appetite. But I came across this thread and felt compelled to write. I have never done that before. Maybe it was the Ellen Shows "Kindness Week" show today that compelled me to "pay it forward" and try to help others. I don't talk to others much about my disease. When I do, most people don't seem to take seriously how very sick I was (near death actually, I had a perforated bowel when I was admitted) because of how well I am today. I hope this post provides HOPE to someone else, even if it's one person and for one day!! It has not been an easy road with this disease, and there have been many sacrifices and tough decisions along the way. But I have always said that if this is the worst I must endure, I feel grateful. It is not a death sentence, it is treatable, it is not terminal, it can be overcome. I pray every day my remission will continue. I also pray for better medicines or even a cure in case it does not and for all the others suffering. But in the meantime, I know that I am not alone.....and neither are you!!
02-13-2013, 05:05 PM   #2
joefigliano
 
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Join Date: Dec 2012
Thank you so much for sharing your story Kimberly, keep it going, everyone has an opportunity to heal in some way and you have proven that. If you would like to read my story have a look at my blog in my signature.
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Last edited by Jennifer; 02-13-2013 at 11:14 PM.
02-13-2013, 11:10 PM   #3
afidz
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Join Date: Jun 2012
Location: Mckinney, Texas

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Kimberly that is great advice, and thanks for sharing your story! Are you feeling any better today?
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Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
02-14-2013, 01:27 PM   #4
Kimberly1967
 
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Join Date: Feb 2013
Location: Egg Harbor Township, New Jersey
Thank you for your comments.

I am feeling better today. Slowing easing back into a normal diet. I guess I'm just getting older. This was my 6th colonoscopy and the most difficult recovery so far. There is something unnatural about doing every thing in your power every day to stay well and keep yourself from having bouts of diarrhea and then inducing that awful mess on your own.

And it's not like childbirth where you don't remember. Five years from now, I will still vividly remember the entire process.
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