Trying to cope (a rather long saga)

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New Member

Date Joined Jul 2006
Total Posts : 4
   Posted 7/9/2006 10:03 PM (GMT -6)   

6 months ago we had a happy, healthy 17 year old son with a very bright future. Then one day he passed out in school, due to severe abdominal pain. Initially they thought it was his appendix, although it couldn't be confirmed with any of the non-invasive tests. We were told that an exploratory surgery was in order. This showed nothing conclusive, but his appendix was removed ("As long we were in there..."). He was released from our local hospital the next day with the original pain intact, an unnecessary (in retrospect) surgery, and assurances that the pain was post surgical and would dissipate in a few days. Well, after a few more days of severe pain we decided to seek a second opinion at one of the larger hospitals, not too far away, in Chicago. After a week of testing there it was decided he most likely had IBS or something similar, but a colonoscopy was required to confirm exactly what. Due to the recent surgery we would have wait 4 - 6 weeks. Colonscopy / endoscopy revealed that his esophagus and stomach were extremely inflamed. Several medications were prescribed and we went about trying to get well again. After another couple months of pain, emergency room visits, and missed school, things got bad. With the chronic pain, alternating diarrhea and constipation, doctors saying it was "all in his head", stressing about school, etc. he decided he couldn't handle it any more. My wife found him one morning convulsing on the bathroom floor, he had dranken antifreeze the night before. After two days of hovering at deaths door he finally was revived. After another week of dialysis his kidneys began functioning again. After three months of counseling and medication things were looking bright. And now it's back. Three emergency room visits this week (severe pain, alternating diarrhea and constipation, eye and skin irritations), hopefully he'll be released tomorrow, then we'll go try the big city hospital again. GOD must have a plan, we only wish we could understand it.

Thank you for listening, I feel a little better now.


Veteran Member

Date Joined Apr 2006
Total Posts : 1665
   Posted 7/9/2006 10:16 PM (GMT -6)   
oh my gosh, what a sad story Kelly. I teach college and have teenage children, and boys that age are so darn fragile, but they won't talk about their problems. I hope things begin to look up for you. Betsy
diagnosed Crohn's March '06.  undiagnosed in June '06 (crazy!)
now just on Levsin SL and Glycolax

IBS sufferer
Regular Member

Date Joined Apr 2006
Total Posts : 41
   Posted 7/9/2006 11:24 PM (GMT -6)   
I feel for you and your son. I remember being that age and being a guy not wanting to talk to anyone about my problems mental or physical. I would even endure pain until I couldn't stand it anymore. I hope that he gets better but I can understand his hopelessness. Sometimes it does seem hopeless having these stomach problems and no one giving a valid medical reason or true remedy. Please keep us updated; I am truly feeling his pain because i've been there.

Veteran Member

Date Joined Mar 2006
Total Posts : 1451
   Posted 7/10/2006 12:24 AM (GMT -6)   
Yes, keep us informed. He has been thru so much as have you. Hopefully someone will come up with an answer. I assume he has had all the CT scans,etc. since it comes and goes there could be some one thing triggering it. Usually they worry more when you have it all the time but this does sound functional. I hope he keeps a diary of food and feelings and maybe that will help when you get to the big city. Good luck. How sad to be so young with this problem. So hard to deal with when you don't know the reason.

Veteran Member

Date Joined Jun 2005
Total Posts : 2976
   Posted 7/10/2006 10:50 AM (GMT -6)   
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.

New Member

Date Joined Jul 2006
Total Posts : 4
   Posted 7/10/2006 10:07 PM (GMT -6)   
Thank you all for your kind words and advice.

I don't have much time at the moment, I'll post a more detailed follow up tomorrow, but here's quick summary of the today...

We didn't get released today as he's been passing out regularly (some times for up to a half hour). His heart rate and blood pressure become very low at times. He's presently on the cardiac floor. so they can monitor him more closely with telemetry. Our family doctor has been working with our GI from Childrens Memorial (there is no GI at our community hospital who will treat minors) to come up with a plan. He had some blood tests and an EEG today. We talked to a neurologist just before I left for the night. She wants to try a another medication (which I can't remember the name of). There was some talk that he may be experiencing an "addisonian crisis". Tommorrow holds more blood work, a brain scan, and another visit with the neurologist.

Well, 4:00 is approaching fast.

Good night and thank you again.

Veteran Member

Date Joined Jan 2004
Total Posts : 4151
   Posted 7/10/2006 11:36 PM (GMT -6)   
Good luck Kelly... hope all goes well.
Hugs, Des
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, UC 2005, Sjogren's 2006
Meds: Sulfazine EC 1000mg, Mesalamine Enemas, Chlorzoxazone 500mg, Naprosyn 500mg, Symax SL .125mg, Protonix 40mg, Xanax XR 2mg, Miralax 17g, Supplements
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Regular Member

Date Joined Dec 2005
Total Posts : 251
   Posted 7/11/2006 9:11 AM (GMT -6)   
Kelly,   After reading your post I cried for about an hour... I am 42 years old and have had IBS for 10 years...  Sometimes I am at my wits end with this because of the pain and everyone thinking it is in my head..  I have had all the tests and even had a hysterectomy and still have the pain and anxiety...  I am now moving from Florida to Ohio to go to Cleveland CLinic for help..  I understand your sons pain...  And have also thought thoughts like your son did..  BUt I have 2 small kids and a husband that I could not leave...  If I were younger like your son I do understand why he did what he did...  I pray for you and your family during this painful time... Please feel free to email me anytime to talk..  I will be praying for you....


Veteran Member

Date Joined Jun 2004
Total Posts : 798
   Posted 7/12/2006 11:06 PM (GMT -6)   

Oh Kelly (((hugs))).  Please let your son know that you'll never give up until you find some answers for him.  I too know that type of pain and feel for him.  about 3 years ago I went through horrible right sided abdominal pain and alternating diarrhea and  constipation and the doctors were sure it was crohn's disease.  Long story short, all tests came back normal so the diagnosis for now is IBS and it's all in my head.  Sad thing though is that my 15 year old son also has my same symptoms and severe pain at times.  I am definitely not saying your son has crohn's and I am not a dr. but I know crohn's can be extremely hard to diagnose and can mimic appendicitis and cause skin and eye problems. 

With the inflammation something is definitely going on.  Maybe look into the camera pill.  This takes an inside look at his small intestine.  Has he had a small bowel follow through? 

I hope you find some answers real quick Kelly.  Give your son a hug from us.  Let us know how it goes and NEVER give up.



Take care, Softy

Veteran Member

Date Joined Mar 2005
Total Posts : 2486
   Posted 7/13/2006 1:45 AM (GMT -6)   

If they are talking about an Addisonian crisis, they must think he has Addison's disease.  Looking back on what you posted, it wouldn't be surprising that they came to that conclusion...a friend of mine's boyfriend has Addison's disease.  I did a bit of research on it because I'd never heard of it.

Basically, the disease causes adrenal insufficiency - the adrenal glands (above the kidneys) normally produce the hormones cortisol and aldosterone.  In Addison's patients, these hormones don't get produced.  In 70% of Addison's patients, this adrenal insufficiency is due to an autoimmune problem - the patient's own immune system begins attacking the adrenal glands.

The first symptoms that are usually noticed include chronic fatigue, muscle weakness, loss of appetite, and weight loss.  There also may be nausea, diarrhea, and vomiting.  Low blood pressure and rapidly falling blood pressure can cause fainting.
Diagnosing the disease can be difficult, especially during an Addisonian crisis, but there are different methods - some involving injecting hormones to basically trace the body's response - as well as X-rays of the adrenal glands. 
Treatment involves giving hormones orally that the person's adrenal glands are not producing. 
You can check out the following websites about it:
I hope they figure out what is causing your son these horrific problems.  Please keep us updated!

New Member

Date Joined Jul 2006
Total Posts : 4
   Posted 7/13/2006 7:33 PM (GMT -6)   
Dear Kelly,
I am a new member, and from me hearing of your sons story, makes me feel like I'm not alone.  I am 22 years old, and I can fully relate to his frustration.  I have had bad stomach flus many winters since I was young, and before my 18 birthday, I had my last stomach flu.  It was so bad, I was bedridden for a week.  That next month, January right after my 18th birthday, I had a small stroke.  My left side was paralyzed for 3 weeks.  I 've been recently diagnosed with IBS after having these episodes off and on for years.  I even had episodes where I may be experiencing diarrhea and have nerve pain in my legs at the same time!  A few minutes after that, I had a seizure-like event.  I was having seizure-like events for a long time after my stroke, so all this time, I was thinking there was a problem with my nervous system, but I now think its coming from the IBS.  Im in and out of the hospital alot too, so I know how that feels.  I was majorly depressed after that event, didn't even know if I was going to make it to college that year.  Its hard when you know something is wrong with you and others don't recognize it, and they say your okay when you know youre not.  I'm going to see a GI doc for the first time next month, and I'm a little worried, but I'm glad someone, my primary doc, has paid special attention to me in this manner.  Keep going, go through as many doctors as you have to to find the resolution.  Let him know that they will find us and help us one day!  In the meantime, we have to live life just like everyone else....kepp your head up!  God has his eyes on all of us! tongue

New Member

Date Joined Jul 2006
Total Posts : 4
   Posted 7/16/2006 9:38 PM (GMT -6)   

Thank you all again for your kind words. It's very heartening to know that there are so many caring people.

It's been a VERY long week for us. He's had 4 rapid responses called this week and spent one night in the ICU. We've had a myriad of tests done, with no conclusive results. The latest thinking is that he may have "intussusception", where the intestine collapses into itself kinda like a telescope. Apparently it's most common in very young children, and would require another surgery to diagnose. We're EXTREMELY ambivalent about surgery as they seem to be grasping at straws. One day they are fairly confident about some medical condition, the next they say it's psychosomatic. We just don't know what to do any more.

We'll see about getting transferred to Childrens Memorial tomorrow. His nurse tonight was strongly advocating a visit to the Mayo Clinic. I guess we'll see what Childrens has to say first.

I wish my wife would take a break and come home. She refuses to leave except to come home for a shower,
I'm afraid she can't keep this up much longer. I at least have work to distract me for awhile each day.

Sorry to lay all of this misery on you, but it does make me feel a touch better.

Good night and GOD bless,


Veteran Member

Date Joined Jun 2005
Total Posts : 2976
   Posted 7/17/2006 10:44 AM (GMT -6)   
Yes, your wife will have to be careful not to burn herself out. Not that she will cease to care for your son, but she will cease to care for you and herself and that can be very hard on both her own body and on your relationship.

Does your insurance cover home health care? You might want to see if you can qualify for that so that someone will come out and check on your son everyday when he is at home and give your wife a little break from nursing. If you can afford to, you can hire a private duty nurse. Some insurances will cover this. My mother worked at this for a few years. She mostly sat with old people, but I seem to recall she sat with a severely handicapped little boy as well so his mother could have a break. A private duty nurse will do any nursing required, plus usually does some domestic chores as well, such as cooking and washing dishes. I think my mother even cleaned house some because the old people she sat with couldn't do it and she was bored and didn't have anything else to do. If you could afford this, even just through this crisis time, it would take a big load off your wife. She wouldn't have to feel guilty about having to go out, leaving your son at home alone, and it would take a lot of the burden of mundane chores off her and free her up to work, if she wants to. I think you can even hire a nurse-sitter out for just a few hours, so your wife would be free to do her errands or work part time and the cost wouldn't be as big a burden.

Sometimes getting away just for a few hours when you are in the middle of such a stressful situation can really take a load off. If you have any family close-by, see if you can enlist them to come and visit with your son for an evening while you and the wife go get dinner and a movie. I know it will seem weird having to have your almost-grown son "babysat" again, but it will take the worry off your minds and probably off his as well. There's been a time or two when I was sick and my dad or grandmother came over to stay with me while my mom worked and I liked having them around; I didn't want to be alone and sick. And I certainly didn't want to be bothered with fixing me something to eat or drink. They'd sit and read or watch t.v. while I napped, or, if I felt like it, I'd go watch t.v. with them. And they'd keep up with when I needed to take my medicine.

I hope so much that they find out what's wrong with your son. This has to be more than just IBS because I don't know of anyone having so many problems before; surely there is an answer. I hope there is a cure as well.

New Member

Date Joined Jul 2006
Total Posts : 4
   Posted 7/18/2006 9:47 PM (GMT -6)   

Well, my wife and son made the trip to Mayo Clinic (Minnesota) today, as none of the big Chicago hospitals felt they could do any more than has been done locally. Son went by ambulance, wife with my very generous sister.

For the first day or two they'll be reviewing all that has happened in past 7 months, talk at length about what's going on now, and come up with a plan of attack.

I'm not going to post here any more until we get through our current crisis, as I'm not even sure it's on topic anymore. Once we we come to some sort of resolution I'll post in the appropriate forum and post a link to it here.

Thank you all again for your thoughts and advice, I wish you all the best in your own struggles to cope.


Veteran Member

Date Joined Apr 2005
Total Posts : 3269
   Posted 7/18/2006 10:50 PM (GMT -6)   
Thanks for the update, Kelly. Best of luck to you and your family!
Co-Moderator for the IBS Forum
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