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Nathanerx7
New Member


Date Joined Jun 2007
Total Posts : 2
   Posted 6/27/2007 8:00 AM (GMT -6)   

To Whom May Be Concerned: 

I’m writing this letter as a small chance to save the rest of my father’s life. I’ve exhausted all avenues I can come up with. So I will start by telling you this nightmare story.

My fathers name is Larry ( the best man I have ever known).He is a 6 foot 170lb, 64 years young ,father of 2 , grandfather of 4, retired Foreman Iron Worker after a 30 year career, then a successful business owner for 11 years. Larry is a very health conscious person. His daily routine did consist of walking 2 to 3 hours a day, vitamins, good attitude, totally sober life, and always trying to help people be healthier. He has many hobbies, from a landscape architecture to playing music on just about any instrument. Whatever he does is to perfection and is never looking for a return. He has always been there for his family and friends to make things better anyway he can.

Now for the recent past of my dad, Larry has had his share of medical problems in life but within the last 5 years his colitis (in the Colon) condition had been worsening. He tried everyway to control it through diet, steroids (prednizone), and a healthy way of living. Gradually it became worse and I don’t believe we knew how bad it was getting because he didn’t want to bother or worry us with his problems. (A rule of his personality). Or possibly the alternatives to his colitis, colostomy bags ECT. Dad is a very much a man of dignity. His personal hygiene is unbelievable and his bathroom life is a private thing for him. After 30 + years of marriage to my Mother they have never used the bathroom in front of each other, so my point is it was very hard for him to open up to the idea that his family and doctors would be talking about things

Associated with gastrol intestinal procedures.

In the summer of 2005 Dad’s colitis became out of control, his colon was not processing nutrients , Frequent and instant bowel movements mainly all blood. His body began eating away at his muscle for fuel.

After consults with his gastronaligist and increase in medication. Nothing was calming down his major flare up. Finally he had to go to the emergency room. That is where the nightmare started. The story is so detailed and long; I’m going to touch on the major points. Although my fathers whole medical experience has been well documented in spiral notebooks made by my mother (Debby) and me. Every dose of meds to everything doctors and nurses said and did. Every output, input, dads deminer and progress or lack of. Everything is written down. Plus we have all medical records we could request. The documenting continues to the present day thanks to my great mom but because my father is still very sick. After staying in the hospital for about two weeks and unheard of amounts of corti-steroids. His options turned into a permanent illeostomy or a temporary loop illeostomy which would reattach to his salvaged anal muscles and give him somewhat of a normal bowel movement. The doctor was so reassuring that it would work fine and give dad back his quality of life. The possible complications was not so clear or explained and not for the lack of our questioning. So after a few more days of hoping the medication would kick in dad decided to go ahead with the surgery. His weight had dropped to a scary 135lbs his potassium levels were low and the reassurance from the “surgical Team” that this is what dad needed.

Dad’s personality starts to change due to all the medication he was on in the hospital. He lives a sober life

Because he doesn’t mix with any type of “buzz”. He is a very accomplished man who has ran crews of 200+ iron workers on major city skyscrapers, took care of his brothers and sisters in his younger life, I guess what im trying to explain is that he has always been the responsible one who controls situations he’s in, for perfection and the well being of his loved ones. So all the drugs they was feeding him started to unsettle him and mentally made him feel like he was out of control of the situation.

After the surgery, Doctor said everything went fine. Dad was Lost in la la land because of the dilaudid pain pump he was on. The day after surgery my strong awesome father has the look of a scared young boy realizing the illeostomy bag is in place and dealing with what seemed to me as abnormal amount of pain. Larry started having panic attacks mild at first but became worse as the days turned to months. His first experience with his illeostomy bag was exactly what he did not need. A trainee of the floor came in and started to change the bag or empty it or something, when it slipped out of her hand and the fluid went everywhere. Dad had an emotional breakdown it seemed this was the first time that in reality he was aware of the surgery and the bag. He had nothing but total regrets. The nursing staff had told us she should have not been doing that procedure.

Alright I now realize if I detail this story out it might be a hundred pages. Here is a quick list of the major procedures and complications in order since august of 2005. I can say nothing actually went the way it was supposed to in fact everything that could have went wrong did except for physical death.

#1 Removal of colon with temporary illeostomy

#2 Nursing error that caused a major overdose of dilaudid which caused Mental Shifting

#3 ER trip for IV fluids because Dad could not eat still

#4 ER trip Due to getting worse not better resulted in another long hospital stay

#5 MERSA infection on the liver from Original Surgery/ Liver Lancing Operation

#6 Total doctor and hospital switch to find some professional compassion for the situation

#7 Many Doctors Visits and Tests with infectious disease doctors to eliminate MERSA infection

#8 J-Pouch Reversal surgery to Eliminate illeostomy Bag and Reconnection of small bowel to j- pouch, and abdominal Hernia Repair

#9 Exploratory surgery due to adhesions blocking small bowel movement

#10 Large abdominal hernia repair with a kugel patch

#11 Kugel patch removal due to it becoming infected replaced with the new real skin patch.

#12 Many trips to doctors to lance infected sites, old surgery wounds will not close and heal properly and large knot in abdominal area witch is causing him great pain today.

Now that is a short and sweet list of surgeries he has had in the last two and a half years. It does not contain all of his suffering or symptoms such as: Violent nausea, Headaches, no appetite, no energy, loss of hope, the emotional stress he feels like he has put his loved ones thru and the year of time he spent in the hospital. Now keep in mind all surgeries have been done thru the same 12 inch incision on his abdomen. He tries everyday to make himself better, but I know my father very well and he is quickly running out of fight. As I write this letter for a bigger purpose, I hate to relive this nightmare but I hope someone is out there fore the purpose of making people better and find out what is causing his symptoms today. This man has sacrificed so much for his family and friends. I could write a whole letter on how he worked his butt off my whole life for us. , no vacations, nothing extravagant, getting things for other people and not himself. He doesn’t deserve to go to a doctors office and the latest doctor shrug off his symptoms to say oooo its just a stitch or something in there causing your pain, if they could only switch bodies with him for 15 min I think they would have a different outlook about his situation immediately.

I’m no doctor but at this point I wish I was. My feeling right now is that a piece of the Kugel patch did not get completely removed and is still infected in his belly.? That would explain most of his symptoms now.

But we need renewed hope from the medical world. So I am in search of a true professional that can take on a challenge to get my father well again. Dad would do nothing less for anyone else.

It would be a true shame to let this great man suffer anymore Please Please Help. If you know of someone who can help or know any info that might assist me in my search please contact me. Or if you need anymore information please call. We have Insurance.

We are a Family that lives life from the positive side. We are not looking to sue anyone, or get any money we just want Larry to have his life back. I’m grateful for having the two best parents a son could ask for and just want to return the favor somehow. So please call me if this long story sparks a fire in your heart and I will be forever indebt to you. With some tears on the keyboard. Lets Make This a Happy Ending. Thanks for your time.

Nathaniel

Edited to remove personal details (full name, address, phone number). Please remember this is a public message board and anyone can access it so be wary of posting too much personal information here - Shaz (moderator of the Ostomy Forum).

Post Edited By Moderator (Shaz032) : 6/27/2007 9:08:04 AM (GMT-6)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 6/27/2007 8:15 AM (GMT -6)   
I am sorry for your dad's continued suffering. I recommend two things:

1. Visit www.j-pouch.org a board with over 6000 j-pouchers
2. A consultation with the Cleveland Clinic your home state. It's one of the best places for colorectal surgery and follow-up treatment.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


Nathanerx7
New Member


Date Joined Jun 2007
Total Posts : 2
   Posted 6/27/2007 12:57 PM (GMT -6)   
Thanks for Your Help
 
ill try the j pouch website
and we are trying the clevland clinic.
thanks again and have a great day
Nathane.

camgold
New Member


Date Joined May 2007
Total Posts : 1
   Posted 7/13/2007 2:29 PM (GMT -6)   

Sorry to hear about your dad.  I have one of the best Colorectal Surgeons who is not one to jump into surgery if not necessary, I had rectal cancer a ileostomy for three months and then a reversal of the ileostomy and just got out of the hospital with scar tissue problems against the small intestine.  My surgeon has been written up in many magazines and is one of the top surgeons/specialists in this field here in Connecticut.  If you don't get satisfaction from your doctors, or if they are willing to have her help I am sure she would be willing.  Her name is Dr. Christine Bartus and she is part of Connecticut Surgical Group here in New Britain, CT, her email is cbartus@ctsurgical.com maybe if you emailed her part of the story she could give you some feedback regarding your dad.

Good Luck


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 7/13/2007 5:25 PM (GMT -6)   
don't know where you live.....but if you can find a way to get him to Cedars-Sinai in Los Angeles, i can connect you to the best GI docs in the world....i.m.h.o.

you may not be able to fix it for your dad, but at least you can stay beside him and let him know how much he is loved.....

you seem to be a great, caring, compassionate son whom your father is surely proud of...and your name is fitting of your character....i hope you have find the strength he needs to keep helping......without people like you the sickest of us would suffer so much more......

my name is nathanael too (yes, with an ael), which is often translated to mean "Gift of God"

remember that and pat yourself on the back, and your mom too.......
"I like rice....rice is great if you are hungry and want 2000 of something...."

"I like blackjack....but i/m not addicted to gambling....I'm addicted to sitting in a semicircle"

"I don't have a girlfriend....but i know a lady who would be upset if she heard me say that"

Videochat with me on camfrog.com: camfrog id: natglad1

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