Posted 7/10/2006 7:50 AM (GMT -8)
Have you had him tested for food allergies? They can cause bad problems. I assume they sampled his stomach for h. pylori bacteria while they were in there? That can inflame your stomach, cause ulcers and make you pretty darn sick.
Anxiety can make IBS worse, but it's not the sole cause of it, so make sure he knows he didn't bring this on himself. You might try looking into anti-anxiety meds because some have been shown to help IBS symptoms, even in people who aren't depressed or anxious--they just seem to calm the gut down.
You might try looking into holistic medicine if you keep coming up blank on traditional meds. I don't think we've had anyone on the boards here try acupuncture, although a lot of us have talked about it. There's also acupressure and various diets. If you haven't done so already, make sure that you have your son keep a food diary of EVERYTHING he eats and also include pain level, bowel problems, etc. and times they happen. This can help you or a nutritionist/holistic healer see patterns between eating certain things and having a reaction. If you can afford it, I'd recommend trying him on an all organic, made-from-scratch vegetarian diet and see what you get. Some people develop a reaction to chemicals or even dyes in food and that particular reaction won't show up on an allergy test. Some people get to where they can't digest meat very well and have to eat less of it or only certain kinds (fish and chicken are easier to digest than fattier pork and red meat). Make sure he avoids all fake sugars--including sugar alcohols, Splenda, Equal, Sweet N' Low, high fructose corn syrup--and, really, has very little real sugar at all, apples and apple juice (these can cause diarrhea and/or bad gas), raw vegetables, pre-cut bags of lettuce (washed in chemicals that mess a lot of people up), spicy-hot foods/hot peppers, fried and greasy foods, alcohol, caffeine, carbonation, coffee, high-acid foods like lemons, oranges and (sometimes) tomatoes. Some people are better off going low-fat too, but low-fat made me worse, so it's a trial-and-error sort of thing.
You may also want to try either homeschooling or see what your school offers for children who are too sick to attend on a regular basis. We had a young man on here not too long ago who was able to get into a home-learning program whereby he did most of his work at home and then just met for a couple of hours once or twice a week with the other kids in the program and a teacher to go over other things. He said it helped his anxiety a lot and his bowels calmed down a great deal (and his grades picked back up). It can be terrifying to be in school and have bowel problems; kids can be very cruel at that age. And being afraid of the bowel problems just makes them worse.
Whatever you do, just keep pressing forward and trying to do something. As parents, you must never give up hope that you can better his life. It may not be that he will ever be normal again, but if it can be managed, then it's no worse than any other long-term problem, like diabetes. Even if the doctors shrug their shoulders and dismiss you, you must not show feelings of defeat. You do not want him to ever feel again that there is no hope. You must put on a brave front and constantly be in search of something else to keep him from falling back into despair. Most people here have managed to find some things that help them and make their lives manageable. It can take a long time and a lot of experiementing, but there are all sorts of things you can look into and try.
There was a movie that came out, in the early 90's I think, called "Lorenzo's Oil"; you may want to watch it. It is about parents of a little boy who was perfectly normal until one day when he became sick and they took him from doctor to doctor without getting any answers. I think the mother finally researched his symptoms herself and found a very rare disease that matched and they tested him for that and he had it. Then she organized a group of parents all over the world who had children who had this rare disease and she and her husband eventually helped discover this oil that corrected the disease. It was too late to do much good for their son, but when it was administered early on enough, it could halt the downward spiral and the children could remain normal. They went through a lot with their son's illness, a lot of strain in their marriage, but they preservered until they had the answers they were looking for. You may find it an inspiration with your own struggles with your son's illness.
Make sure you check out the Crohn's and/or UC boards as well and talk to the people there about their symptoms and how they were diagnosed. It took some of them a very long time to get a diagnosis. Some of them even had IBD all along, even though it didn't show up on the first test. That's why you just have to keep after it. I think skin irritations are even a symptom of Crohn's and it can come and go rapidly like that and cause severe pain, bowel problems, elevated temperature, etc.
And don't fret the appendectomy; my father had his to rupture, so be glad your son never has to worry about that; my dad was sick as a dog and weak as water for 6 weeks afterwards and it took months and months after that for him to get back to normal. One less thing to have to worry about. There is more than one person on here who wishes they could have exploratory surgery just to rule things out, so don't feel like that was for nothing either. At least you know he hasn't lesions or a mass or a kink or anything like that causing his problems. IBS, unlike any other disease, is all about ruling everything else out. Once you have tested for everything under the sun and have come up empty-handed, then you know there's just something wrong with the function of the guts, the brain isn't controlling them properly. There's no other way to figure this out without ruling out every other known cause.
And one of our members, Sarita, kept coming up blank on all the tests, despite pain so bad she frequently had to have IV meds and diarrhea so bad she averaged a trip a month to the hospital for IV fluids as well. Even the Mayo Clinic scratched their heads over her. Her doctor's nurse tried her on a presciption of strong antibiotics, on the off chance she had some infection that they just couldn't find and it did her a world of good. They still don't know what's wrong with her, but since she's had that round of antibiotics, she's been almost normal. So sometimes you just have to try things kind of at random on the off chance that they might work.
Make sure your son knows he's not alone; there are so many people out here who have all sorts of pain and bowel problems. He's always welcome to come on here and vent and lament with the rest of us.