Can this really be IBS?...
#252984 - 03/18/06 06:46 PM
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perplex46
Reged: 03/18/06
Posts: 3
Loc: North Carolina
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My 16-yr-old son started having stomach pain about 1.5 years ago. Once the pain started it has never gone away. The intensity is from 3 - 8 (10 being the worst). A pediatric GI did all types of testing and all came back normal. He diagnosed my son with IBS. Since then we have tried changing his diet by eliminating all dairies; eliminating chicken and other foods based on blood allergy test; decided to eliminate red meat and try Heather's way; Did acunpunture for months; Worked with a dietian familiar with IBS; he has gone to a counselor in case of any hidden issues; Did 3-weeks of wheat/gluten free diet (not sure if this was long enough time). With all this,his pain has never gone away. For the most part he wakes up with pain level 2 and as soon as he eats breakfast (no matter what it is. ie: rice cereal w/rice milk) which triggers a bowel movement his pain level shoots up to a 7. Last semester he missed 28 days of school (semester is only 4 months long). He basically has IBS-D. He is taking fiber which helps with the D. Plus alot of minerals, enzymes and vitamins, and Heather's Peppermint caps as perscribed by a Naturopathic (holistic) doctor. With everything that we've done, my son continues with pain on a daily basis. None of the anti-spamodic meds work. The only med that helps is hydrocodone which we try not to give. Recently, he started on Tramadol which drops his pain to a 3 and he can make it thru school. We are seeing another GI this time for adults. He re-ran a CT Scan and bloodwork for Celiac - waiting on results. We have an appt to see a GI specialist at Chapel Hill. At 16, he has his whole life in front of him. If we can just get the pain to a manageable level without the meds and maybe even to level 0 - it would be wonderful. Any suggestions on other steps to take?
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He should have a clonoscopy done...they can take biopsies that way and check for all sorts of things.
It could well be IBS. What kind of fibre supplement is he taking? It could well be worth switching to another to see if it helps more....everyone responds differently to the different SFS. Also, it sounds like the hypnotherapy course could well help him.
As he's D, has he tried taking Immodium daily as a preventative? I took 1 capsule a day when stabilising and it really helped.
Is he following the diet strictly? It's very important to cut out ALL the triggers, so double check labels and make sure he doesn't eat the wrong things away from home. And following all the guidelines...regular SF, lots of water, no big meals or drinking fast, etc.
And to check for gluten you ideally want him to be off it for a bit longer before you reintroduce it. Also gluten is in alot of obscure things and for an exclusion diet test it's important to cut it out completely.
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Linz, thanks for the feedback. He did have a colonoscopy over a year ago when it all started and it was normal. He was taking Citrucel fiber and then switched to a mail-order brand provided by the holistic doctor. The D acts up when he starts eating things he shouldn't eat and we up the fiber and he stabilizes. But the pain is always there and that's the confusing part. I read the postings and it seems that yes everyone has different triggers but they are not in constant pain. The one thing that he hasn't stopped eating is long grain white rice. Does this have gluten? we've been thinking of eliminating the rice but he loves it and there's not much on his list that he really likes.
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In fact, most of the GF products are made of rice flour. It is the only grain that does not produce excess gas, as well.
I have tried everything you mentioned....the GF diet for over a year, this diet, soluble fiber supplements. Nothing has worked. I am also in pain every day, just like your son. And the doctors tell me they think it is severe IBS. They suggest hypnosis to help "live" with this and manage it so it doesn't consume my life.
Pretty hard to do when pain is a constant reminder. 
I think keeping the white rice is the best thing you can have him eat right now. It is gentle, soothing, healing.
What is in the mail order fiber? It could contain things like psyllium which could cause problems for someone, especially if they are prone to D. So could inulin. When he was taking the citrucel, how did he feel better than he did with this new SFS? Have you tried any others? Or tried skipping them altogether? Many people just can't tolerate any SFS. Also, an Antidepressant could help with pain....as it has been tested and proven to reduce pain associated with IBS. Mine isn't helping much...but who knows, it could be worse without it!
Good luck...keep in touch. I feel the your son's pain....literally. It's not a fun way to live...if you can even call it living. 
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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...so if you have any questions, I could probably help. I've been at it over a year now.
Why is your son eating GF? Has he been officially tested for gluten intolerance or celiac? He has to be eating gluten for a while before the tests in order for them to be accurate.
Also, is he on a probiotic? I know the strain in the brand Cuturelle has been tested and proven to help diarrhea in children who were hospitalized with D.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I am sorry to hear about your daily pain. Did a life changing event trigger the pain or did it just start happening? My son had stomach issues but they would go away. Then we moved to a new state about 1.5 years ago and that's when the pain started and never went away. He seemed okay with the move but maybe he internalize his feelings. The mail order fiber comes from Pure Encapsulations (Nutra-Flax). It contains no dairy, wheat, yeast, gluten, corn, sugar, starch, soy, preservatives or hydrogenated oils. His D basically acts up when he sneaks in some dairy like ice-cream. The first GI recommended anti-depressants but I felt that it should be the last resort. The 2nd GI does not agree in giving anti-depressants to teenagers. We'll see what the 3rd GI will say from Chapel Hill. The tramadol seems to help him deal with the pain and make it through the day at school. The 2nd GI doesn't like this drug either but he has to go to school. let me know if you find a solution for your constant pain and I'll do the same. good luck...
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I hope you are still checking the boards. I have never posted before but your story about your son caught my attention. My son is also in constant pain but we have been able to drastically reduce it. He strictly follows the IBS diet and is taking Heather's fiber. We buy a lot of organic foods at Trader Joes and Whole Foods. I have to check every ingredient on labels and I check the % of fat to make sure its below 30%. It was a huge adjustment and I made a lot of mistakes. But it has definitely helped Kyle. When he cheats on the diet he always has problems and it takes awhile to get him back on track. What has helped the most though are the hypnotherapy tapes offered on this site. I believe that stress is one of Kyle's biggest triggers and I think that is why the tapes are very effective for him. He hasn't been able to get through the whole series yet because sometimes he just doesn't feel like doing them. But when he does them they really make him feel better. They take a lot of focus and concentration but they only take about 30 minutes per day. Kyle got IBS after have a very bad stomach flu over a year ago. He too missed alot of school and alternated been C and D. The GI doctor and pediatrican seemed really useless. But this website has been a Godsend for us. I definitely know the desperation and hopelessness you must feel at this point. I hope you find answers for your son soon.
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-Darlene
Mom of an IBS-A Teen.
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I'm glad to hear the EFI Diet is helping your son and I think it's so kind of you to start posting to help someone else's child. I hope your son continues doing well - it sounds like he's got a great mom!
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Thanks for the warm welcome! I recognize your username and have read many of your posts in the search to help my son.
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-Darlene
Mom of an IBS-A Teen.
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