# help



## Guest (Oct 22, 2001)

my son [lanned on playing college baseball and was a great student. He has been sick since June barely getting to school and unable to really do anything. Is this the best we can hope for?


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## linds1979 (Sep 7, 2001)

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## Guest (Oct 22, 2001)

THanks Lindsey. I see him getting worse and worse and so discouraged. What have you tried? What has worked? My heart is breaking for what is clearly not such a "benign" condition.sam's mom


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## dima (Aug 11, 2000)

hello sam's mom,i sympathize with your situation. this condition brings a lot of mental strain on a person. your daily routine now has to adjust to your stomach. sometimes a person may feel as though they are alone and nobody understands what they are going through. i don't know what advice to give you other than tell you what my parents do. my parents, actually my entire family, tell me it's all in my head and that i'm not sick. they tell me i'm making this up. so please don't say that to your son. take my word for it that it doesn't feel good.dmitry[This message has been edited by dima (edited 10-22-2001).]


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## Guest (Oct 22, 2001)

I know it is NOT in his head and I want to make things OK. We are going to MD often, he is home from school a lot and has gone from an athlete and a happy young man to someone in pain. We are trying acupuncture/elavil and anything anyone can suggest. I can't stand to see him suffer.Thanks for your comments and as someones mother "This is NOT in your head".sam's mom


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## laure1122 (Nov 30, 2000)

Let me know how the accupuncture goes. I was actually looking into that myself. By the way, maybe you should tell your son to start posting on this site. I'm sure he has a lot on his mind. This site has helped me cope in more ways than I can mention. Before I started posting/reading on this site, I actually felt very ALONE and depressed bc of it. Now I find comfort in knowing there are other people out there going through the same things I am (as bizarre as some of them seemed).


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## linds1979 (Sep 7, 2001)

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## linds1979 (Sep 7, 2001)

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## lindsay* (Jul 23, 2000)

like the other lindsay i was diagnosed when i was about 17. i was so sick then that i actually got down to 86lbs and couldnt even keep water down. i'm now 112 and my symptoms have improved so much. i paid close attention to my diet and tried elimination diets on several occasions. i've found that a strict vegan diet, high in fiber works for me. fruits and veggies don't bother me and neither do spicey foods.. a lot of fellow ibsers have problems with those foods though so he should really keep a diary of what he eats and how it effects him and start out on an elimiation diet. basically for a few days i ate clear liquids, i moved up to eating dry toast, crackers, potatoes, and just added a few new things each day to see how i reacted to them.tell him to keep his head up. ibs can get better, pretty much go away, or come back. for me it has gotten better.i've also found that stress management and yoga helps with my anxiety.if i'm having spasms i drink chamomile tea.. it seems to help. i stay away from caffiene and alcohol. i'll maybe have a couple sodas a week like the blue sky brand since it doesnt have preservatives. i also avoid preservatives and the waxes put on fruits. sulfides are put on produce- especially salads at restaurants and they bother me so i only buy organic produce. i'll scratch the apples to make sure there is no wax- if there is i peel it before i eat it.i also always keep immodium and a bottle of water on me just in case. i'll take an immodium before i go out and after eating if i'm eating out.if i'm having spasms i'll drink tea, lay on my side or in the yoga position 'child's pose' where it looks like you are worshipping something.. you lay with your knees and the bottom half of your legs touching the ground and your torso touching the tops of your thighs and stretch your arms out in front of you. sometimes i'll take a bath or use a heating pad. i'll also rub my belly in circular motions like women who have just given birth do.i hope this helps


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## Guest (Oct 23, 2001)

Sam says he thinks there is something wrong they aren't finding. He has been in constant pain for 5 months with no let up. Has anyone had that? ANyone know what makes it stop? He has stopped hanging out with friends and stopped playing baseball and is just miserable because he is in such pain. We have had all the tests and all are negative. Today we go to the pain clinic at Children's Hospital but he feels like this is never going to end.Thanks for listening.Sam's mom


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## linds1979 (Sep 7, 2001)

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## Guest (Oct 23, 2001)

He has had all those tests and there has been no change in pain level in 5 months. I call MD all the time and we are in there often. We are so frustrated and sad at this point.He is on elavil 30mg and had 3 acupuncture treatments but there has been no relief.sam's mom


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## linds1979 (Sep 7, 2001)

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## kinetic (Oct 19, 2001)

I'm not sure I can really offer any further advice than what's been said, but I would like to say that I'm really happy to see you taking an active part in supporting your son, and not following the path of "it's all in your head". I do hope your son finds a solution or at least something that helps soon, and I would also add my voice to the suggestion earlier that you get him on here to talk to people... I think that's something that will help him deal with it a little better, by knowing there's other people with the same problems that he can talk to. Now if only all parents were as supportive as you...


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## Guest (Oct 24, 2001)

Last night his dad came by and did say he thought this was all nerves and nothing that warrented the doctors visits we are making. Thankfully he did not say that to Sam.Today we are going to the Pain Clinic, acupuncture and then an appointment with the GI doctor. I think Sam could manage if it wasn't non stop pain and I don't know why they can't treat the pain.sam's mom


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## linds1979 (Sep 7, 2001)

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## UKgirl (Sep 10, 2001)

Linds is right, unfortunately one of the hardest things to accept about IBS is that it won't just "go away" there is no pill that you can take that makes it suddenly all better. It is very difficult to come to terms with this, especially as a young person. You feel as though your life has been hijacked.You have to start working out how you deal with this new life i.e. what foods to avoid, what meds help etc, and it's a long process, but worth it in the end.Sometimes I think that on this board we can all sound a bit like we're old hands and have come to terms with IBS, but it isn't true - although I'm sitting here writing all this stuff I am as bad as anyone with feeling miserable and wishing that it would all just get back to how it was before this thing when I have an attack.All the best to Sam though - get him on this board so he can see for real that he is not alone.HugsH


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## linds1979 (Sep 7, 2001)

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## kinetic (Oct 19, 2001)

another thing i'd like to point out....I can sense that you're frustrated at all the work you've been going through with tests and doctor's visits trying to figure out what's going on... and not finding anything that's helped at all... and i'm guessing sam is feeling much the same way if not worse since it's happenning to him... I'm really touched that you've gone through so much trouble to try to find out anything that could possibly help.... I hope sam knows how much you're doing for him.... just make sure you're encouraging him and remaining optimistic as much as you can around him.... he needs all the support he can get right now as he learns how to deal with it and figures out how to adapt his life to work around it.


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## MALI (Jul 8, 2001)

sam's mom, at one time i had all the tests your son had done. all the gastro doctor could come up with was that my smal intestines where inflamed. he thought i had Giardia. but the Flagil did not make me any better. after that i was on a long list of drugs for IBS. nothing helped, soon i was housebound living on white rice and baby food. when things got desperate the doctor ordered one more test: messuring stool output for a period of 72 hours. this test showed that i suffered from Bile Acid Malabsorption. there is a "Of Lable" medication on the market called: Questran Light,( Cholestyramine). don't mean to sound like a know it all.just want to help. i feel bad for your son. i know about this constant pain. it is terrible! i'm a mother too. it breaks your heart to see your child suffer and you can not make it better. one more thing, it may help sam somewhat if he posts on this site. best of luck to both of you. MALI------------------


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## Guest (Oct 26, 2001)

I find it so helpful to hear what you have all said. Thank you and I am so sorry for oyur suffering which I can fully appreciate.Sam has had 2 quiet days. We have no idea what has helped be it the acupuncture, elavil, TENS, or just something else. He is going to meet with the bio feed back therapist and they can also talk about the emotional end of all of this.He dad (my ex husband) keeps suggesting colleges far from home and I fear he just doesn't get it. This may be part of the landscape of Sam's life.Sam's mom


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## MALI (Jul 8, 2001)

sam's mom, reading through this thread again i see some very good pointers have already been given. have food allergies been checked? the pain and diarrhea could be caused by foods sam is sensitive to. keeping a food diary is a good idea. as mentioned camomille tea is calming to the gastro tract.don't go for those fancy herbal mixes, just plain camomille. please let us know how things are going. MALI


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## Guest (Oct 26, 2001)

I may be wrong but I have noticed the MD"s we have worked with don't seem to place much weight on food allergies. Sam has cut diary and we have started to keep track of pain etc. Our GI doc said the allergies would have showed in the biopsy's and other tests but I have wondered. He has had 2 days in a row that have been good.Thanks sam's mom


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## lindsay* (Jul 23, 2000)

allergies are different from just having difficulty digesting something. i'm lactose intollerent but i'm not allergic to it. eggs for me are a great example.. i'm not allergic to them but they cause me painful gas so i avoid them. the same goes with preservatives. i don't break out in hives if i eat them.. i just get d because i can't digest them.my gi doc, my colon and rectal surgeon, and my dietician have all told me that some dietary changes are necessary. some of us just can't digest certain foods while other foods aid in digestion. it often has nothing to do with allergies and and when it isnt allergy-related it isnt likely to show up on a test.


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## Guest (Oct 27, 2001)

sam's mom,After reading your messages for one I must say you are a great mother! And Sam is lucky that you are so understanding, cause not everyone is. I am new to this site and might have some suggestions for you. I was recently diagnosed with IBS. I have been dealing with this for about 5 years now. I went to Mayo Clinic for a day and a half of tests to try and find out what was wrong and I was told I was healthy on paper. Not what I wanted to hear. But after that I went to an allergist and found I had some allergies to foods and other things. I don't know if it will work for your son but it wouldn't hurt to go to an allergist. I am sorry to say it but your doctor probably doesn't suggest going to an allergist cause you going and seeing him keeps him busy. I have lost almost all hope in doctors by now. That is till my new doctor, a nurse practicioner actually, told me about IBS. She also perscribed Aciphex for me. I don't know if it will help your son but it worth a try. It is a drug used for acidy stomaches, ulsers, you name it. From my understanding it is new. It hasn't completely cured me but it has made life a little more normal I guess you would say. Also I have had no side effects. Have Sam stay away from dairy products. I was told they irritate more. I hope I could help.


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## Nikki (Jul 11, 2000)

Look, it may not even be a food allergy or a food intolerance. Sorry to put a dampener on it asll. It might just be plain old IBS , in which case it will go eventually. The pain i mean. I am 18 and have had it for 3 years. It was really bad in the beginnig. I have had a couple tests. Stool samples and sigmoid. I don't think all tyhose others, baruim swollow etc are really needed. they can diagnose it with much less!He will get through ithis. I am at uni now and loving it. Its just something he will have to live with, as i have been doing for 3 years. Its hard but it does get easier. If the tests have all come back negetive then its probably IBS. Them being negetive is a good thing. It means its not anything serious.Give you son my email address. He can talk to me about whatever he wansts. I understand. I've been there, i AM there!


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## kinetic (Oct 19, 2001)

ok a few more comments...Questran... ick... i had that and the first time i took it, I had been feeling better for about a week, but that stuff made me sick again... maybe i'm allergic to it or somethin...And Aciphex... I was on that too, but I didn't really notice it being much of a help... and I hate taking pills all the time if I don't have to, so I just quit taking it... if I get heartburn I eat a dozen tums or something and it goes away... glad to hear sam has had a couple good days now =) hopefully things will continue that way and the pain will be less frequent... =)


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## Guest (Oct 29, 2001)

dear sam's mom,i am about 2 weeks from my 21st birthday, and i've had ibs since a bad stomach flu when i was 7. there have been good times and bad times through it all--it's not all bad. but it is something that sam will have to learn to live with. it's all about management. managing this is a lot of work, but it is definately worth it. i would totally suggest you get sam to come on the bulletin board because then maybe we can help him with more specific symptoms, and just chat. but otherwise, here is my big list of what to do:1) THIS IS MOST IMPORTANT...get a referal to a good ALLERGIST. this is the single most urgent thing you should do. they'll get proper reaction tests done, and put sam on a diet for anything that he reacts to. this is key: be strict about it--read labels, and don't have even trace amounts of anything reactive. ask about cross reactions--combinations of foods, or of foods and airborne allergens that cause reactions. this has been the most effective for me. keeping a food journal is also really helpful in pinpointing things. i finally started seeing a good allergist a year ago, and am actually better--not cured, but things are more under control. it turned out that apart from my strong milk allergy, i have a yeast allergy, which explains why i was always sick after breakfast--toast.2) excercise and relaxation. get him to try and excercise regularly. it's hard, but it helps--phys. and emotionally.3) find a way to stay social--have friends over to watch movies. being isolated is no fun--even when you don't want to see anyone, it will help mentally and therefore physically to keep having as much fun as possible.4) be diligent--don't give up. once things get into a bit of balance, it will look better. i still have bad spells where i want to give up and go back home--i've come very close. but there's so much at stake, and i can't let this condition beat me. i just remember i've made it this far, and i can make it the rest of the way. this is my fourth year away from home, and i'm ok. if sam WANTS to think about going away, think about it--it's not impossible. on the other hand if he wants to stay home, that might be best for now. just keep listening--sounds like you're doing a great job. let us know how it goes. and see an allergist! by the way, if you're at all in doubt about how the MD is treating sam, go get a second opinion. it's not worth it to chance a wrong diagnosis. good luck!midge.


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## UKgirl (Sep 10, 2001)

Hey Spliff - great to hear that you are enjoying Uni now - it's just so cool isn't it?!Hi Sam's Mom - How is Sam now? Have the good days persisted? Just wanted to add my sentiments about you helping Sam so much - you are a great Mum, he's really very lucky to have you.HugsH


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## Guest (Oct 30, 2001)

Thank you all for so much helpful information. Sam has had more good then bad days since last Wednesday. We are hoping for a full week of school and that he will go to the gym tonight. NOt sure if the acupuncture or elavil has made the difference but something has. I hope you are all doing well. I liked the comments about being a good mom!!!!sam's mom


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## MALI (Jul 8, 2001)

Sams Mom, so glad to hear sam is doing better. lets hope it was just a temporary problem. good health and good luck to you and sam! MALI


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## Guest (Nov 15, 2001)

Dear Sam's Mom,I have been tring to message you for weeks, but I kept getting a message that "this site is under construction". Also, the way it is now formatted, I really got lost. Anyway, how is Sam doing? Let me know how things are going and also refresh me as to the questions you had, ok? I went for my first accupuncture treatment at the pain clinic for migraines and I feel better-still headachy but better. Anyway, I can't believe it, but my IBS d is better-could it be because of the accupuncture?Anyway, I'm glad that I finally found you.Dawn


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## Misst06 (Nov 15, 2001)

Hey! i'm new here too! I read sams story and i can sympathize with him tremendously even though i'm only 13 yrs old. it is so hard for me to get through school let alone other activities, social functions, parties, etc... teens have so many pressures and stresses alredy, we shouldn't have to be put through this too! Tell sam i know how he feels and i miss tons and tons of school, last year it was 26 + days, and i had to live through the constant remarks or "oh she was skipping" too! I'd love to hear more from you. Hope hes feelin better!


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## TryingToDeal (Dec 21, 2001)

please please please try accupuncture and alternative herbal medicines from an md that specializes in this i know soooo many people who got a lot better


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