My daughter

My daughter has just turned 41 and has been sick for about 5-6 years and now that I reflect more. She has had so many different symptoms that come and go and has been to hospitals in RI (where she lives) Ma, Cleveland Clinic and now May Clinic in MN. No one can give us an answer. She was diagnosed with Gastroperisis caused by Scleraderma (spelling?). Mayo Clinic has told us that she does not have Gastroperisis. She put on 40lbs. in four months. She blows up as if she is nine months pregnant with large twins where she can stretch no further, everytime she eats anything, no matter what it is. Of course some things bother her more then others. She was hospitilized in RI and they did all that they knew how and then shipped her by ambulance to Lahey Clinic (Hospital) in MA. They put in an NG tube and pumped out about 3 to 4 containers of food or whatever that had accumulated in her stomach and small intestines. She had nothing by mouth for a month, for that was how long she was there,  and never lost one lb. except the small amount that was removed from the NG. She went home with a smaller feeding tube which eventually clogged and had to be removed.She is a nurse herself but has been on disability for lack of being able to work. Sometime the fatigue is so great that she just doesn't get out of bed. She has to be careful not to dehydrate and pain spasms are terrific. The Drs. had her on so much pain medication and other drugs that she was just listless. She finally went off the pain pills herself. She has had large and odd shaped red blood cells/swollen pancreas with enlarged bile duct pushing into the pancreas or vice versa, thickened stomach lining, told she has Barretts Disease, collapsed right sided colon, poor liver functions etc, etc, and etc. She was finally diagnosed at Cleveland Clinic in MN with Gastroperises caused by Scleraderma. Her feet go numb and tingle, her hands also and now they freeze up from time to time where she is unable to use them. She has just recently developed an indentation on the outside of her left thigh. The mucscle around it feels nubby and hard. Cleveland Clinic she that this is incurable and there was no more they could do. She got worse so I took her to Mayo Clinic in MN. They told her she was mis-diagnosed with Gastroperisis at Cleveland Clinic. They don't know what is causing the problems but (after many tears) said that they would not give up on her. She returns to Mayo Clinic sometime towards the end of April to see and Rheumatologist and more testing. I lost my son in 2001 in a horrilble accident caused by a hypoglycemic attack from Junenile Diabetes and my daughter lost (my grandson) her son from a drug that was given to him two weeks before he was to graduate from High School, he never woke up. All this has just compounded things. Thank goodness I have another daughter who is there to listen to us. We would be completely lost without her. If anyone can give some answers------PLEASE!

[mrsjt50]

Wow, sounds like she has gone thu the mill! I read your story, and had to leave a note for you. My belly was doing the same thing. I think they scanned my whole body. It hurt when I ate anything, even water would swell me up like a balloon! It was pretty painful. What they found with me, was my gallbladder had shut down. It has been removed, I still get the bloat but nothing like before. I also have gastritis and IBS combined with Fibromyalgia. I get swelling of hands and legs/feet. tingling. I put on 30 lbs and cant get it off. I dont think its the same thing as your daughter, but perhaps the gallbladder might be something to look at, if they have not already done so. I am so sorry about your son and grandson!  hopfully, someone here will have an answer for you! take care!

[DJ_Kleen]

Just a real quick one...  I was in a rush but then felt compelled to read your story, and I'm very sorry for everything that has happened.  My wife was diagnosed with Crohn's Disease at the age of 12 and has had many surgeries do to it.  This past February, she had her entire colon removed, part of her small intestine and had a permanent Ileostomy bag placed.  It's a very big deal for such a loving, pretty, and young woman to have a pouch always connected to the outside of her body, but she handles it gracefully!  Anyways, I've been with her for 8 years now, and I'm not one to sit around and not try to help her situation.  Her ileostomy was inevitable, no matter what we could have done.  BUT, I can't stress enough the absolute power of proper nutrition and healthy eating.  The medical industry still doesn't acknowledge that you NEED to eat the right food.  Good God, I was just in the hospital for over a week when my wife had surgery, I never left her sight, other than walking up the street to get her real wholesome food.  How is it that you can have your stomach ripped open, have major surgery, and then hospitals "nurse" you back to health with microwaved meatloaf for dinner?  I'm pretty sure I heard the meat "meow" when I poked it...  Over the last several years, I've read many books on nutrition, why to eat organic, what it means, why processed foods are so bad for you, why to avoid high fructose corn syrup, why hydrogenated oils are bad for you.... I could go on and on...  Look at the TV shows around you: The Biggest Loser, Dr. Oz., etc..  Finally some shows that show you that anyone can be healthy! Diet and Nutrition, I'm telling you.... Crohn's Disease, Celiac's Disease (people who suddenly become allergic to gluten)...  These diseases aren't found in many non-modernized areas and countries, because those people are living off their own organic farming, and away from all our crappy processed foods.
It's sad, but it all boils down to money, and unfortunately greed rules all....
What do you have to lose, look into all-natural and organic eating!  People always say the same thing to me "It's too expensive.."  I promise you whether you spend the money now on good food or spend that money towards future doctors visits or surgeries, healthy eating is MUCH cheaper.  The most expensive part is the meat, chicken, fish, etc.  If you cant buy them organic, at least get them all-natural and without any antibiotics, etc.  When I implied this diet, I was 215 lbs.  I lost 20 lbs. the first month alone.  Can someone please tell me why I have a 6-pack now, but I couldn't have one when I wanted to in high school???  Oh, I know why. Because I ate like crap and school taught me nothing about nutrition other than that stupid pyramid...  What a joke!
Pick up a book, start learning a little every day.  Dr. Oz is good to watch because he's all about preventative medicine, nutrition, and a healthy lifestyle.  If you browse the internet, you'll find some great information on all this stuff!  Good luck, and remember, just because the doctors can't figure out what's going on with your daughter, that doesn't mean you won't either...  Don't give up, keep trying!