Desperate Mom!

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CSOG
New Member


Date Joined Dec 2005
Total Posts : 11
   Posted 12/3/2005 11:37 PM (GMT -7)   
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?

7Lil
Veteran Member


Date Joined Apr 2005
Total Posts : 3269
   Posted 12/4/2005 12:20 PM (GMT -7)   
Hi CSOG,
Welcome to HealingWell!
I'm sorry to hear about all the pain your daughter (and you too!) are going through. IBS is so complex the docs haven't figured it out yet.
I would think that if your daughter has had all the scopes (upper & lower) then there shouldn't be anything else to worry about. However, since it has been a year, and cancer & IBD run in the family, you can always request another scope. (I think dbab and/or Sarita have scopes yearly.) It would be a sure way to put everyones minds at ease.
I can't really give you any tips and pointers that your daughter hasn't already tried. Usually the anti-spasmodics and pain meds do the trick. To answer your question, yes IBS can be extremely debilitating. What about a good ol' fashioned heating pad? I know that helps me when I have cramps.
Good luck! I hope someone else will come along with some insight soon.
Keep us posted.
Co-Moderator for the IBS Forum
 
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dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 12/4/2005 8:28 PM (GMT -7)   
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).
Hugs, Des
Co-Moderator ~ IBS Forum
 
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CSOG
New Member


Date Joined Dec 2005
Total Posts : 11
   Posted 12/4/2005 11:53 PM (GMT -7)   
Thanks for posting your experiences. It is so appreciated. I really value all of your advice because it comes from experience.

Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 12/5/2005 9:18 AM (GMT -7)   
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!

Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 12/5/2005 12:09 PM (GMT -7)   

CSOG, I'm sorry to hear your daughter is having such a rough time.  Like most of us on this board, I too have endured a lot of tests, but the thing is that they usually find some abnormality that doesn't really fit into their idea of what the puzzle is, so I still don't have a diagnosis.  I, like your daughter, have episodes of pain that are so intense there isn't anything else to do except go to the ER for morphine shots.  That happens about every 1-2 months.  The rest of the time I make do with some anti-spasmodics or the occasional narcotic painkiller by mouth.  I have frequent diarrhea, lost about 30 pounds, have low-grade fevers all the time, some bleeding occasionally.  Nocturnal symptoms as well.  The docs tell me they don't think it's IBS but they don't have an answer!  It is super frustrating.  Totally sympathize with you...

You might want to get repeat scopings done, if you can.  Or get your daughter a capsule endoscopy if your insurance will pay for it.  It's a camera that is swallowed and takes about two pictures per second as it travels through the small bowel (part of the intestine that can't be scoped normally).  It passes through the digestive system and is eliminated (no, you don't have to retrieve it!).  It can be a pretty good test to diagnose small bowel disease.  Have you heard of it?

 

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