a little scared

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CSOG
New Member


Date Joined Dec 2005
Total Posts : 11
   Posted 1/6/2006 11:46 PM (GMT -7)   
My daughter who is sixteen has been suffering from IBS D really badly since mid-november. She was diagnosed almost a year and a half ago with IBS but 10mg of Elavil seemed to take care of most of her problems except for occasional flare ups that would last a week or so. In September, she began to have constant pain almost all of the time that we tried to control with Levbid and levsin. In mid-November, she developed these attacks that would be so painful that we had to rush to ER. She describes them as sharp knife like pains with someone twisting her intestines. Her general doctor gave us pain meds so she wouldn't have to keep rushing to the hospital. Since then, her diet has been limited to rice, fish, chicken, white bread, (you get the idea). She has lost 35 pounds since the beginning of September and she is worse almost always at night. Sometimes she wakes in the middle of the night in pain. She came up positive on a Promitheus First Step Test for UC but has been negative in all other blood tests and scopes for IBD. She was raised to 75mg of elavil but it didn't help. She has no teenage life right now. She has to take the pain meds almost every late afternoon or every night and is so nautious off and on during the day that she takes one to three compazine. She is out of regular school, in independent study and can't drive when she is on the pain medication. Is there any hope of her just waking up one day and feeling better? She is wanting to get back to school and just be normal. Because of the narcotic pain meds, she becomes more C than with D. When she feels a little better and reduces them, then her D comes back. Her diet is already so limited. She has cut out dairy, fat, chocolate, coffee, soda, etc. Has anyone experienced anything similar? If so, did anything help? Any advice would be appreciated.

Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 1/7/2006 8:38 PM (GMT -7)   

Hey CSOG, I'm sorry to hear your daughter is having such a hard time.  These gut issues are a beast for anyone, let alone a teenager.  It sounds like your daughter is in a pretty similar boat as I've been over the past year.  I had several ER visits as the result of severe dehydration from sometimes 15-30 episodes of diarrhea per day, or extreme pain - very similar to how she described them, like I was being knifed or something equally awful - that also sometimes woke me up in the middle of the night.  And all they could do was the same fluids, narcotics, etc. that your daughter has inevitably been receiving.

Things did start getting better, eventually.  Not immediately and not noticeably at first, but over the course of the past two months I started noticing less episodes of pain and fewer days of bad diarrhea.  My doc said it could be a remission of sorts, although they are not sure what is causing it, so it's unclear if it's just going to keep getting better or if I'll slip back into the nastiness.  I'm holding out hope for the former.

Is your daughter under the care of a good GI doc?  Have they talked about any other medications besides narcotics?  It's good she's on a low-residue diet.  Calcium carbonate, Lomotil, or cholestyramine might help the diarrhea.  As for the pain...has she tried regular doses of anti-spasmodics like hyoscyamine or dicyclomine?  These are not nearly as strong as Vicodin or Percocet but if she takes them regularly (i.e. four times a day) she may notice fewer days of great pain.

I don't really have any advice, but I do sympathize, and although it's not likely she'll just wake up one day and be symptom-free, there is a chance she'll gradually start improving on her own.  Is she still able to hang out with her friends, keep up with her hobbies?  Keeping her life as normalized as possible is the key, even though it's obviously hard when she's ill. 


CSOG
New Member


Date Joined Dec 2005
Total Posts : 11
   Posted 1/7/2006 10:27 PM (GMT -7)   
Thanks so much Sarita for sharing your experience. My daughter is taking levsin usually 1/2 hour before meals but it doesn't touch the pain. The pain always gets worse after she eats. She has tried Bentyl before but it didn't seem to help. I am glad that you are starting to feel better and I hope that I can report some day soon that the same is true for my daughter. It is so frustrating that there is a disorder out there that no one really has a handle on that makes people so miserable. She is not able to hang out with friends much except on the rare days that she feels a little better. I keep thinking that the doctors are missing something, but I am beginning to realize that they probably are not. I have seen good GI doctors but I am looking for one that specializes in IBS. It almost seems that if they can't find inflammation, they really don't know what to do except put the patient on elavil or pamelor etc. If that doesn't work, then they seem disinterested after that. Her D gets much better when she unfortunately needs the narcotics because they slow everything down. She has even become C on the weeks that she has needed alot of narcotics. But when she lessens them again because she feels a little better, the D comes back. Thanks again for sharing and for your advice.

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 1/8/2006 2:59 PM (GMT -7)   
CSOG,
Have they ever discussed looking at your daughter's small bowel using the capsule endoscopy? I recall she had a colonoscopy and upper endoscopy [?] that showed no inflammation. That leaves about 21 feet of small bowel that hasn't been visualized. There have been several cases of people having normal looking SBFT and CT, that did infact have Crohn's in the small bowel when they used the CE to view it. I would also recommend you find a GI that specializes in IBD - I think the positive Prometheus warrants further investigation of her gut. Just my 2 cents. --Ides
CD, Ankylosing Spondylitis, connective tissue disease,
asthma, PAD, peripheral neuropathy
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CSOG
New Member


Date Joined Dec 2005
Total Posts : 11
   Posted 1/8/2006 8:38 PM (GMT -7)   
Thanks Ides ~ my daughter has had a barium small bowel series that came out negative for Crohn's but she has never had the camera study done. Is the the barium series supposed to be conclusive enough? CSOG

7Lil
Veteran Member


Date Joined Apr 2005
Total Posts : 3269
   Posted 1/9/2006 10:45 AM (GMT -7)   
Hi CSOG,
From what I have heard the Promethius test is supposed to be pretty good (i.e. accurate). I would seek a second opinion and maybe push for the capsule endoscopy.
Best wishes...
Co-Moderator for the IBS Forum
 
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Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 1/9/2006 3:17 PM (GMT -7)   
CSOG, I had a NORMAL small bowel follow through (SBFT) [baruim study of small bowel] and I have Crohn's in the terminal ileum. I have not had a barium enema because my colon was visualized during a colonoscopy. If your daughter had a normal SBFT, and a positive Prometheus, she needs to have a capsule endoscopy. PLEASE, discuss this with her GI. If he/she says no, take her to a different GI.
CD, Ankylosing Spondylitis, connective tissue disease,
asthma, PAD, peripheral neuropathy
Please help support this forum. http://www.healingwell.com/donate/ 


CSOG
New Member


Date Joined Dec 2005
Total Posts : 11
   Posted 1/10/2006 11:31 PM (GMT -7)   
Thanks Ides ~ I will take your advice and ask for a camera endoscopy. That is interesting that a SBFT doesn't always show inflammation.
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