Melissa’s story

Posted Saturday, November 4, 2006 @ 10:29 AM   

Our nightmare began coming home from a trip to Florida. Melissa, 13 years old, became sick. We had to stop several times. It was a miserable trip home for Melissa.

After 5 days, she was still throwing up—nothing seemed to help—I kept thinking it was the flu. I took her to the doctor and he began running blood tests. Melissa was admitted to our local hospital, and later to a children's hospital. There she was seen by a pediatric gastroenterologist. An endoscopic procedure was performed. Several tissue samples were taken during the procedure. The doctor returned with his diagnosis: Crohn’s Disease. I had never heard of Crohn's disease, but I knew one thing for certain: I didn't like the sound of it, nor could I believe the diagnosis; after all, she had always been well!!!! 

The doctor started Melissa on 60mg. of prednisone and she was released from the hospital. That very evening she was able to eat pizza! This was remarkable, as she had not been able to keep food down for several months! (She had lost a lot of weight and looked very malnourished.)

Next, I began studying Crohn’s. I found out that granulomas must be present in biopsies for a positive diagnosis of Crohn’s. I didn't remember the doctor mentioning granulomas, so I was anxious for the confirmation of the diagnosis. On Melissa’s next office visit I asked the doctor if granulomas were present in the biopsies —I knew they had taken 19-22 tissue samples. I will never forget the stare he gave me. Instead of answering my question, he asked me one: “What have you been reading?” 

I answered honestly—a medical reference book. I learned that day that “some” doctors do not think you should be TOO informed! He told me, “No, there were no granulomas in the biopsies that were taken, but I am 99 % sure she has Crohn’s disease." He added, "And if not Crohn's, it would be lupus."

I was taken aback.  How can a doctor give a certain diagnosis one minute and offer up another diagnosis the next?? 

The doctor advised us to join the Crohn’s/Colitis pediatric support group. We did. On our first meeting, I immediately noticed the children did not have the symptoms Melissa had.  She had constipation—they had diarrhea. She had miserable back pain—they did not complain of back pain. 

She could eat—most of them could not, or were limited to what they could eat. I began thinking that my daughter didn't have Crohn’s disease. Thus began a 14 + year search for an answer to her crippling pain…and a weekly ritual of trying a new doctor.

We went to many doctors…..and most especially to many gastroenterologists. They all had different opinions of her problem, but after many concluded that they doubted she had Crohn’s, we were often left with no answer. A few stated that she probably had spastic colon or IBS. 

At one point during our long and tiring ordeal, I was verbally attacked by Melissa's adult gastroenterologist when he learned we had sought the help of an alternative medicine doctor. He accused me of taking her to a “witch doctor” and he was enraged that we had taken Melissa off the prednisone. (Since Melissa suffered the same with or without the prednisone, we opted to stop the harmful drug.)

In a round about way, we were later ordered out of his office as he screamed, “You will do as I say or I will not be your doctor!” My normally quiet daughter lost it that day and firmly, but kindly, told him he had not never offered her any help other than prednisone! After she told him how she felt he had ignored her severe pain and ignored her as a patient, she then told him she no longer WANTED him for her doctor! 

Never once did any family doctor, gynecologist, gastroenetrologist, neurologist, endocrinologist, or any other “ologist” ever say “maybe we should do a laparoscopic procedure”. So, on and on, our search continued. I spent night after night after work on the Internet looking up weird diseases, praying I would stumble upon the thing that would give my daughter back to me! I mistakenly thought that everything could be seen with x-rays, sonograms, colonoscopies, upper and lower gi’s…..I had no idea. Adhesions and endometriosis cannot be seen without a lap procedure.

In 2001, after yet another doctor told her that she just needed an antidepressant—I changed. We came out of this office visit feeling so very hopeless—after all we had just met with a top doctor from a renowned hospital which claims to "get to the bottom of mysterious illnesses." (Yeah, right.) 

This doctor spent less than 10 minutes quizzing Melissa before he told us that he had read her “file” (uh-oh) and “You need to accept your illness”………..Melissa & I were devastated, as this had seemed to be an opportunity for REAL help. Once in the car Melissa, crying, said, “I will never be well—they all think I'm crazy—maybe I am—maybe I don't hurt—maybe everyone feels like this and I just can't take it.” This time I had no words of encouragement for her. I felt so hopeless, however, I became more determined on that drive home. I truly realized that we were “on our own”……….we would never be helped by a “doctor.” That day I knew that it would be up to us to figure out her illness by ourselves…and THEN find the appropriate doctor!!

I had always prayed that God would give the doctor we were going to see knowledge. Knowledge to know what was wrong. Knowledge to know what to do to get her well. After this trip, however, I came home and cried (screamed!) out to God in a new manner! From that day on, I prayed differently. God, give me knowledge to find the answer. Not much later, while searching the Internet, I came across endometriosis once again. I had read about this disease before, but we had already expressed our concerns to many ob/gyn’s and they had each told us this was NOT Melissa's problem. I also came across polycystic ovaries. After much reading, a feeling ran through me and I knew without a doubt this had to be Melissa’s problem.

I called Melissa (she was in bed, sick) and told her just to listen as I read. She finally answered, “Mom, you're right–that’s it—I just know it.” We both agreed we were on to what was going on inside her body. I jumped on a chat line and some nice ladies told me of a doctor to take her to. She had an appointment within 3 days and the doctor sat down and ever so kindly said, “No doubt, you have endo.” 

He apologized for the medical community and explained how women are so mistreated in the US concerning endometriosis.  He said many ob/gyn’s refuse to believe that endo causes any problems. He told us that most women diagnose themselves.

On Jan., 2002, he performed her first laparascopic surgery. After a three and half hour surgery, he came out with a grim look on his face and photos of ADHESIONS! Her whole pelvis was a mess. All her organs in the pelvis were fused together. The fallopian tubes were stuck to the pelvic floor and bulged with fluid that was unable to drain…

Unfortunately, our excitement that her problem had been found and had been corrected, was short lived. The next day Melissa said she still hurt….as much as she did BEFORE the surgery! I could not believe my ears. My mind couldn't comprehend! She HAD to be better! But, it was true; she was not. She said she really felt no different than before.

She had her second surgery (by another surgeon) in Sept., 2002. That surgeon explained that he excised endo aggressively and removed even more adhesions.

I know our battle is not over, but what a relief to at least know how to fight your enemy and to know WHAT we are fighting. What a shame that many other girls/parents will ride this hellacious roller coaster. I will do everything I can to help other little girls not have to endure what my daughter has. No parent should have to become a medical detective. I have learned so much and I am sure there is more ahead. I will never be intimidated by doctors after what we have endured. Thankfully there are a few loyal, kind, and honest, doctors still out there. However, it is so unfortunate to have to dig through the rubble. My hopes are high. God has brought us this far and he will see us through.

 

UPDATE!!!!!!!! Within a month of our return home from Melissa's second surgery, she was still in pain. She felt no relief!!!! Her stomach bloated larger and larger. She began telling me she felt pain in “new” areas where she had not had pain before!!!!………She said, “Mom, I think the surgery has made me worse—I should have never had it!”……….I kept thinking she was still dealing with surgery pain and surely she would begin getting better. Soon we were facing repeated bowel obstructions. She could tell by the severe pain.

She would moan in pain, the pain so severe that beads of perspiration would break out on her forehead. We rushed her to the ER one evening in March 2003………..what a nightmare!!!  The ER doctor would NOT listen to us and insisted it was “probably the flu”……….we got up and walked out with the “nurse” running behind demanding we sign out if we were "refusing treatment" (What treatment??!!) …Melissa and I kept walking!!

Thankfully Melissa survived that horrible night (another one!) as my husband and I sat beside her thinking we 
would surely have to take her to another ER any minute. I kept envisioning her being rolled into an emergency surgery and God only knows what the outcome would be. I was so thankful when her pain subsided.

I had heard of Dr. Kruschinski. so the very next evening I emailed Dr. Kruschinski. I told him what Melissa had been through and the tests we were considering having done: colonoscopy, upper/lower gi’s, colonic ring test and an endoscopic procedure. I asked him if he could tell me of any other tests that may be needed. He replied, “Do the tests if you must, but the problem is sure adhesions, bring her to me while she is still able to come.”.………

Within a matter of days we were scrambling to get passports and preparing to go to Germany.

I am so happy to report my daughter is WELL thanks to Dr. Kruschinski!!!!!!! I still cannot believe it and I will be forever grateful to the talent, skill, ability, brilliance, and efforts of Dr. Daniel Kruschinski!!!! Melissa had adhesions on her liver, diaphragm, stomach, intestines (large and small) and pelvic organs. Her endless vomiting, daily nausea and daily headaches/migraines were immediately GONE after her surgery! She could also breathe easier and had never realized she truly struggled to breathe! (She thought everyone breathed as she did!)

The next morning she was surprised, but elated to find she did not feel nauseated. For 14 plus years she had dealt with morning nausea! The morning after her surgery we laughed a lot and discussed what it would be like IF her pain was really gone!!! Dr. Kruschinski was as excited as we were; he was in her room early that morning and asking, "No more pain, only surgery pain?"……..Melissa could not answer, as she was unsure! After so many years of suffering, it was difficult to think or imagine a life without pain.

Dr. Kruschinski’s knowledge that CO2 is known to cause cell death in the patient and is a co-factor in adhesion formation resulted in his own invention, the AbdoLift. His zeal to create his own device to insufflate the abdomen results in beneficial factors to the patient that is submitting themselves for adhesion surgery! Dr. Kruschinski removes the risk of cell death during his surgeries, along with the risk of new adhesion formation by the exclusion of CO2!!!!!! Dr. Kruschinski is a leader in providing the most advanced talent, skill and equipment for the adhesion sufferer. He is a man of extraordinary compassion and loves his work! His interest of the patient's well being is in his heart! What more could one ask of a surgeon that not only has the knowledge that CO2 is harmful to the patient, but DOES something about it??!!!

Thank you Dr. Kruschinski—a true pioneer for the adhesion sufferer!

It is unbelievable that Melissa is finally free of the 14 years of misery, pain, suffering, and torment she had endured. Our family is overjoyed to see Melissa as a participant of life again! 

Dr. Kruschinski you are to be commended, as you have truly “gone to bat” for the adhesion sufferer!!!!!!!! And, in my eyes, you have hit a HOME RUN!!!

 

May God bless you abundantly!!!………..

 

Karen

 

[Edit by gingirl on Saturday, November 4, 2006 @ 11:27 PM]

——————–
Karen 

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Melissa's article

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 Posted Wednesday, August 13, 2003 @ 04:02 PM   

Hello to everyone, 
I am Melissa (Karens Daughter), I am sure you have heard so much about me!!! I hope all good [B][/B]  I am posting for my first time!! I am sure you are all wondering why I never post. To be very honest I am to busy getting on with my life!! I am making up for lost time!! I was ill for so long, and now I am soooooooooooooooooooooooooo much better, all I can say is thank God for putting Dr. K in my path!!!  He was answer to my prayers!!  I had suffered for so long, and my mom drug me all the way to Germany to have surgery with Dr. K. ..I was just going along with it, because I had ran out of hope!!  And when I met Dr. K. I was really impressed with his optimistic attitude about getting me well!! No doctor has ever cared before.  And sure enough God put me in in the right hands!!! Look at me now, I am working out everyday, I work in the yard, I go to the mall  I am doing all the things I couldn't even think of doing!!  And I have to say Dr. K has been a true blessing in my life!!  I am so much happier now, I HAVE A LIFE!!!! So people can so all the cruel things they want, but God has touched Dr. K's hands and he is doing true miracles that no other doctor has done!! 
I AM OUT OF BED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Thats a MIRACLE!!! And I thank God everyday for giving me a mom that never gave up hope, and a doctor that really does want to help you!!! I am blessed!!! 
Sincerely Melissa 

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Posted Friday, December 8, 2006 @ 03:15 AM   

Dr. Kruschinski was a doctor who was confident that he could help me.  Thank God he did!  I had given up hope and had decided my life would continue to be a life lived in bed; battling pain, vomiting, and migraines. Many times I didn't want to continue to live, because I was not living, only existing. I desperately sought HOPE and I found comfort in the Bible, my family and my pets. I was fortunate to have a mom who was always trying to find someone to help me.  After my surgery with Dr.K, I knew he'd done something remarkable to my 
stomach area.  The old nausea and pain was gone. I could also breathe better. Still, I was unsure. I had been sick so long that I expected the old problems to start again.

Next April it will be 4 years since my surgery with Dr. K. I am well!!!!!!!!!!!!!  I have had a few health problems, but I can handle a few problems! And the few problems I have are because of my own genetic makeup, which we all have to accept the fact that we are unique and sometimes we have health issues.

I don't know why those women slander Dr. K, (and my mom, Helen and others), but they will get their just reward. I feel VERY sorry for them and most especially for their children, husbands, etc.. It is VERY sad to me to know that people actual waste their lives away by enjoying bringing harm to others.  I can tell them this: The things you have written are hate and lies. Dr. K is one of the finest human beings I have ever met!  He gave his ALL for me. 
And because of that, I am well–and have a beautiful baby boy!  There's not another person on earth who does as much for others as my mom does. She sacrifices her own life for everyone elses's and she is someone who has handled a ton of grief in her life and handled it with grace, tears and laughter. She loves. Period.  She won't want me to say a word about her, but mom, you are the best!

Dr. K,  my best to you. Like my mom always says: "Nothing, and no one can change who you are." I am glad you have shown them that you are who you are, regardless of what they say. 
 

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Posted Tuesday, July 25, 2006 @ 04:22 PM   

Hi,

I know I am not good about posting. Sorry!  I am just too busy chasing my little boy and enjoying my life!!! 
I am very disappointed knowing that people exist in this world who have tried (and continue to try) to discredit Dr. Kruschinski. Before my mom and I went to Germany, I was without hope. Honestly, I never thought anyone could ever help me. I had totally given up hope.  I would not even have gone to Germany had it not been for my mom insisting, because I had already had 2 surgeries and I only ended up in worse shape after 
those surgeries! I developed pain in areas where I didn't have pain before after those surgeries!!! So, I was pretty upset that my mom thought I should go for another surgery!! Because I was so sick, and no one could help me, I was only asking God to help me make it through each day. I prayed for pain free days and I felt so blessed if I had a day when I wasn't vomiting! When a person has lived in terrible pain every day for many long years and spends their life vomiting and crying and you've gone to doctor after doctor, you finally lose all hope to ever be well again.

I had lost all hope! Thank God, my mom had not lost hope for me, because I would have never had another surgery!!!!!!!!! Because I respect my mom and dad and know they have my best interest at heart, I agreed to go to Germany to Dr. Kruschinski. But, I admit I was not happy about going!!!!! I just knew that a doctor was not going to help me because we had been to soooooooo many doctors!!!! But, was I in for a shock when I woke up from surgery!!!!!!! I could tell that Dr. K had accomplished something inside of me that the other surgeons had not!!!!!!! I was afraid to even think it was possible that he had helped me, and my mom was asking over and over if I felt any difference. I really wouldn't talk much because I just knew that even though things felt different that at any time the old pain was going to start and I would be doubled over. I also was positive that I would be vomiting again, as this was how I lived eery day!!!!!!!! Well, I never did feel the old pain again and when I ate, I did not vomit!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 

My mom said that one of the moron women who attack Dr. K recently posted that I am not well. Isn't this strange, because to my knowledge this woman DOES NOT KNOW ME!!!!!!!!!!!!!!!!!!!! How would she know how my health is???? For her information and for those who may wonder if she speaks the truth, I can tell you the woman is a liar, for I am VERY MUCH WELL AND VERY, VERY ACTIVE AND VERY, VERY HAPPY!!!!!!!!!! Not only am I well, but I have been well ever since I left Germany in April of 2003!!!!!!!!!!!!!!!!!! Have I had any problems? Yes, I know few people who don't!! For her information I have PCOS and I will deal with it, so she can stop spreading lies that I am not well!!

I would like to tell suffering people that this illness is not understood in America. It is very sad, but very true. I know because I lived it!!!!! God has blessed Dr. K to help people who suffer and if I were the women who attack him, I would walk in fear before God!!!! It is just like Satan to rise up and attack a person who has found the answer to an illness!!!!! These 2 women must be very sick in the head. I feel very sorry for people who live with such hatred in their hearts. That is what is wrong with the world today. Instead of being happy for all the people Dr. K has helped, you hate them and speak lies about them, but you don't even know them!!!!! That's okay, because I don't need your approval. God answered my and my family's many, many years of prayers for me to be healed. I am healed. Deal with it.

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Posted Sunday, February 10, 2008 @ 02:39 PM   

Beautiful little Felix!! How wonderful that so many women have been able to experience the joy of motherhood after surgery with the most remarkable surgeon on earth!  The list of ENDOGYN miracle babies continue to grow!! I promised to post pictures of Melissa's newest sweetheart, Mazie Grace….though she is tiny, she is already growing into a big girl. Because Melissa developed a condition known as "HELLP" during her pregnancy, her tiny one had to be delivered immediately. But, all is now well with both mom and daughter.  In the photos, Mazie and Mom spend hours "skin to skin," which doctors strongly encourage while baby is in the NICU.

One day Felix and Mazie, (and many others!!) will know just how special and miraculous their births were. 

 *© photo copyright karensteward 02-08-08

*© photo copyright karensteward 02-08-08 

——————–
Karen 

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Posted Sunday, July 3, 2005 @ 04:54 PM   

Melissa sent some new photos of Thomas for all to see……he is quite the handsome man and a real 
charmer! He grins at his grandma and then squints his eyes tightly……too cute! We are worried 
though, as each time Melissa says, "Thomas no, no," he simply laughs out loud!!!!!!! I told her 
"He is all boy! Already laughing at his mama when in trouble!"

——————–
Karen 

 

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Posted Thursday, December 14, 2006 @ 08:06 PM   Is that Santa in the distance?

Hero: "What do you think he left for you?" ……Thomas:"I dunno. What do you think he left for you?" 

Merry Christmas….I Love You! 

Merry Christmas to All!!!

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Posted Saturday, December 16, 2006 @ 08:53 PM   

Hi Connie! 

Melissa is a photographer.  She takes some great shots and always has a camera in her hand. 
I will post some of Taylor. She's too cute. They both turned 2 in October and shared a birthday party. 
Thomas is so much bigger than Taylor, as he is "off the charts" for his age. Taylor is tiny, but a big voice!

Hope you and yours are well. Tell Leon I say "Hi" and to buy you something wonderful for Christmas! 

PS….You asked!!! Here's our sweet baby girl, Taylor

 

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Posted Sunday, December 25, 2005 @ 12:47 PM   Melissa took photos of Thomas on the coldest day we've had so far this year! He seemed to like the brisk air and actually got to wear some of his winter clothes. She made Christmas cards from the one of him and his dog, Hero. The pictures were a big hit with family and friends, thus I call it our Christmas picture! Hope you enjoy seeing our special boy!

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Karen 

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