My daughter has chrons disease. She had surgery in January and had a bowel resection. She continued to have back pain. Then on April 8th, she started vomitting. She continued to vomit and couldn't keep anything down. She has vomitted for a month and a half. She also has back, side pain and pain under her belly button. They have ran numerous test on her and have found nothing, but gastroparesis. Has anyone out there had a bowel resection that went wrong and has had these symptoms? She has been in and out of the hospital for a month and a half. We did transfer her to another hospital. She has a ng tube down, which seems to be helping. She has very bad pain when she vomits. She did the best ever yesterday. She only vomitted once. I guess I was needing information, because the doctors can't seem to find what is causing the problem. We are still worried that the surgeons did something to her bowel, or could this be just from the gastroparesis that she has developed.
Here's a support site where you can post a question for other IBD parents
http://www.dragonpack.com/ibdsupport/parents/
I'm not sure how old your daughter is, but being from the medical profession, from the part of the story you describe, I would find an academic medical center that is well known for GI and get her seen there. For a child, I would consider somewhere like Rainbow Babies and Children's, or an adult-age child, maybe Mayo Clinic. It may take a while to get her in, but her physician should be able to set such a consultation up. I hope she gets better - good luck!
Gastroparesis will cause those symptoms. My Mom has it, and the only thing that helps her is taking Domperidone...it's a medication from Canada (perfectly legal to order with a dr's prescription), that helps her to be able to digest the food properly. I'd have her checked out, perhaps a second opinion, from a GI dr.
Hi, K. -
I am SO sorry to hear about this terribly concerning situation! I don't have anything to offer other than sympathy. My grandmother had terrible bowel trouble and resctions when I was growing up and had to be so careful for so many years about what and how she ate. My other grandmother had crohns disease, so I know how she suffered, too.
I think if I were in your situation ... and if it's possible to afford it... I would seek as many opinions as I could. It sounds like your daughter -- and you -- are suffering so much. I know how something like this would have devastated my Mom on my behalf, and I go a bit crazy when my daughter's even running a high temp. So, I feel for you.
I am wondering whether a MRI could be helpful. If they haven't done one, perhaps you could press for one. I believe that can be used not only to show soft tissues but also done with a tracer to show how things move through the area in question.
I wish you ALL the best, and I commend you for your strength.
H.
Have they ruled out her gallbladder?
I had gall stones and then a non-functioning gallbladder and vomiting was an everyday thing for me until I controlled my diet and then got it out.
Don't want to scare you, but also have they ruled out colorectal cancer? Has she had a colonoscopy? A friend of a friend of mine was diagnosed with IBS then Chrones Disease and after medicine after medicine didn't work she finally had a colonoscopy and they found out it was cancer. She was 23 when she was FINALLY diagnosed with it. If it was caught early she may still be alive. It's something to look into.
Hi K.
I know that Chrons can be totally handled nutritionally. If you are interested I can put you in touch with a lady that has done it. She is an expert in nutrition and has handled her own cases of chrons without surgery. Would be very happy to help you.
S.
Have you been to see a clinical nutritionist? Where do you live? Have you contacted CCFA (Crohn's and Colitis Foundation of America)? What are their goals in treatment? This tends to run in families so EVERYONE in the family needs to get on board with an EXCELLENT diet that will keep the inflammation to a minimum. Is she taking any supplements or HIGH QUALITY vitamins - NOT over the counter stuff --at all?
What research have you done on the disease?? Have some sources if you're interested. And the correct spelling is CROHN'S DISEASE. It will help you find it.
Dear K.,
Chron's is often treatable with diet but most doctors don't know how to use diet to let the tissue heal. Dr. Merkle has had good success in helping people with this kind of problem. He is in Dayton but uses blood and other tests to develop a diet and supplement program for the patient. If you are open to doing something different then Dr. Merkle is a good option.
His office is ###-###-#### and his web site is www.3000health.com Listen to some of the radio shows to get a feel for what he does and how it works. They don't know S. so just tell them that you got the link from the net.
My friend, Becky, had bleeding from her bowels for 40 years with no help from any regular doctor (and she is a nurse.) In six weeks on Dr.Merkle's program she stopped bleeding and the problems went away. Worth a try. And please keep me in touch with how your daughter is doing. I'll be praying for her.
God Bless,
S.
My sister has Chrons and went almost 60 days w/o solid food. Her last bout in the hospital she was having extreme pain and apparently the chrons has attached to her bones surrounding her bowels and such. That causes swelling and inflamation which causes severe pain. I don't know if that help or not. Also she has started going to OSU medical center and they are apparently amazing!!!!! I don't know where your daughter goes, but it may be worth the drive. I know my sister goes there even though she isn't close.
Dear K.,
My 24 yr old daughter was diagnosed almost 2 yrs ago with Crohn's. Luckily, she has not had to have surgery, but has been treated with Remicade infusions every 8 wks from the beginning (once diagnosed). Prior to being diagnosed we literally watched her waste away before our eyes. I understand what you're going through - no parent should have to watch their child go through this - I would trade places with her in a minute. Have you gone to the ccfa.org (Crohn's & Colitis Foundation of America) website? They have a wealth of information. I would also be sure to go to a doctor who specializes in Crohn's disease. My daughter sees (honestly) Dr. Krone. His bedside manner isn't always the best, but he knows what he's talking about.
Best of luck to you and your family,
G.
Hi K.--
My husband has Crohn's disease and he had surgery about 15 years ago to have part of his small intestine taken out. I will ask him if he has any suggestions for you. He still has a lot of gastrointestinal issues, but it's tolerable most of the time unless he has an attack every once in a while. I do know that there is a Crohn's support group in Columbus (I think it's around the Little Turtle area) and there are also organizations that you can call for advice. I can't remember the group off-hand, but when I called them a few years ago, they were very helpful. I'll see if I can find the website or phone number for you.
Hi--sorry I think this went to you without editing. The CCFA website is http://www.ccfa.org/?gclid=COWqzKDVspMCFQwaHgodWCrV4w and they may have some answers or resources for you.
