Desperate Mom!

I just joined this website today due to the advise of a close friend with Crohn's. I have a daughter who is 16 years old and has been suffering with what we have been told is irritable bowel for almost one and a half years. Up until this September, she has been getting by with only 10mg of elavil leaving her with very occasional attacks requiring the use of Donnatol here and there. As of last September, she develped an attack that has resulted in a 25 to 30 pound weight loss, constant discomfort and an increase in the use of 50 mg of elavil that doesn't seem to help. She also uses Levsin when needed. They since changed the medicine to 50 mg of Pamelor which still doesn't help. Over the last three weeks, she has suffered attacks that come on strong with what she calls knife like stabbing pains combined with someone twisting her intestines. The pain seems to always be around her belly button and just below it. She also complains of more frequent nausua. These recent attacks seem to come on so quickly. She will be sitting in her room working on homework or chatting with friends and all of a sudden she is screaming in pain. This led to frequent visits to the ER for pain shots. The hospital did an abdominal x-ray, catscan and MRI. It has been over a year since she had a colonoscopy or endoscopic exam. Since she has been released, her IBS has continually become worse. She has needed pain medication to overcome the attacks at least once a day. We have tried different diet stratagies but none seem to help. The doctor's have assured me that this is definitely IBS and not something more serious although she has never has any barium upper or lower GI tests. Since her symptoms have changed so dramatically over the last year and a half, I am having a hard time believing this is only IBS. My mother had serious bouts of Ulcerative Colitis and she passed away from cholangiocarcinoma (bile duct cancer). Therefore, colitis runs in our family. Have any of you had experience with this kind of debilitating IBS that contains attacks this painful? She never is prone to constipation and her diarrahea seems to be more controlled at times with a soluble fiber supplement. Yet, her pain is not relieved with going to the bathroom, she wakes up at night from pain and she has had weight loss. From what I have read, that is not typical of IBS. Yet the doctors insist it is. Any suggestions?

Hi CSOG,
It could very well be IBS because the range of symptoms for IBSers are so broad. I do have colonoscopies every 1 to 3 years and have had 3 so far ever. Its not until this last one that I was dx'd with UC (which my grandmother has btw as well, it seems to have skipped my mom (crossing fingers/knocking on wood)). I also have had IBS for 16 years so I have had symptoms long before the UC reared its head. Is she having any blood in her stool? This is usually an indication of something other than IBS (although blood can be seen with hemmhroids).

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Bless her heart. I don't know how they can say she definitely has IBS when she's never had a lower GI test (I assume no colonoscopy?). Does she have random fevers, especially when she's having an attack? I've heard fevers are associated with Crohn's (don't know about UC). You should definitely cross post your original post on the UC and Crohn's boards to see what they think. While some people do have IBS really bad, that much weight loss and that much pain really do sound like something more serious (not to mention the genetic factor).

I hope you can get some information and get to the bottom of this. I can't imagine being so sick in high school. That has to be so stressful!