Horrible pain....not sure what it is

   My daughter has had stomach pain for about a year. She's 15 and has Down syndorme and a history of strokes. We started tests last April and she tested positive for Celiac, it got better and her numbers came down. The pain started again and then her constipation (which she's had since she was a baby) started to cause diarhea. Many tests later she was also diagnosed with Crohn's disease.  She was put on Asacol and a follow up colonoscopy showed decreased inflamation. Her colonoscopies (she's had 2) also showed that even after taking the "clean out" she was full of stool still. She was diagnosed with cronic constipation. She started miralax daily and dulcolax every other day. Still with no relief. The pain continued enough that she would cry.(her verbal skills are not that of a typical 15 yr old so it's hard for her to explain the pain) her pain seems to be in the same area you describe. When she's really backed up she also burps a lOT and gets very bloated. She also asks for a warm towel or hot bath and this seems to help. So long story short here have you been constipated at all? and have you had a colonoscopy ( I don't think it was on your list). XRays have showed her intestines to be full of stool even after a bottle of Magnesium Citrate or Miralax. She was admitted to the hospital so they could admisister Golytely through a nose tube and this di wonders she's had a good few weeks, but the pain seems to be returning a little.

Mary G

Thanks for your replies, everyone. I really appreciate the responses.

@mayflower:
I was given a few different pain meds in my course of several different doctor visits. Vicodin was somewhat effective (in that it kind of zoned me out) but I didn't want to use it much, since it's pretty strong. I was worried about being addicted to it or something.
Another doctor prescribed me Ultram (Tramadol), but that didn't really help. Then by another doctor I was prescribed some kind of prescription ibuprofen drug (I can't remember the name of that one) but it didn't help.
I do have pretty high stress levels, and sometimes when I start to feel the pain it makes me upset ("AH! Another day of pain!!!") which makes it worse, I think. Just adds fuel to the fire.
So far I haven't been able to figure out any food triggers. I pretty much have the pain all the time no matter what. But I haven't done an official food diary yet.
I don't have pain when I go to bed. That's the funny thing. I NEVER wake up in the middle of the night with pain. In fact, I have pain all day and evening, then I go to bed and feel better in the morning. Even when I wake up in the middle of the night to go to the bathroom, I feel okay. Then the pain starts about an hour after I wake up.

It's just really making me miserable. It's been over 7 months now...
I'm only 29 and I feel like this is ruining my life :/

@Mimi:
Thanks for your response.
No, I haven't had a HIDA scan. I had a CT scan of my abdomen and pelvis. Do you think that they would've looked at my gallbladder with that? Or is the problem you have not visible on a CT scan, only detected by measuring output levels?
You described your pain as coming and going more frequently and lasting longer. The thing about my pain is that it's constant (although it goes away when I sleep). I wake up, feel okay for an hour, then have pain all day, it doesn't come and go.
When you were hospitalized over Easter, did you have a fever? Any nausea, vomiting or diarrhea? (I haven't had any of those.)
Is your stomach swollen? Mine is- as in, I've had to wear dresses for 7 months! I can't stand the waistband on pants! :( but I haven't gained weight, my stomach is just bloated or swollen.
It is interesting that you have pain in the same areas as I do: near the navel, under your ribs, pelvic area. Having pain under my ribs (right where my bra strap goes) is the really weird one for me.
I have a doctor's appointment tomorrow so I will ask about gallbladder problems.

Sorry you are so hungry and afraid to eat! (That is the worst!)
A few ideas of easy foods on your stomach:
Applesauce, boiled chicken, scrambled eggs...
Last week I tried an all-liquid diet (to reduce the bulk of what was passing through my digestive system). It seemed to help. I had a lot of whey protein shakes, muscle milk, almond breeze milk, v8 and v8 fusion.

Hi tigerlily,
I know this is a bit a an older post, but I was wondering if your doctor found out anything. I've been experiencing intense pain similar to as you described. I've been through all the tests, seen many doctors and even been to Cleveland Clinic, with no answers yet. The pain gets so bad I cannot get a deep breath, and everything I eat just "sits" in my stomach as well as makes me nauseated. I did have my gallbladder out two years ago thinking that was the answer, but it didn't help. (We had high hopes--the HIDA scan was 7% functioning!) BTW, I too am in my twenties-26 and a girl. :) I was just wondering if the doctor found any answers for you yet and you don't mind sharing.
Thanks

Repeat CT ask to check appendix, lymph nodes, gall bladder

All these symptoms sound exactly what i am feeling.  I am miserable and cannot figure out what this is.  I have been feeling this for about a month and half now and havent been to work since it started.  Of course my mind goes crazy about what can be wrong with me but i have an dr appt nov 1st to look inside my bladder to see if there is any reason i can be hurting in pelvic area but I hurt all under ribs and feel a deep, achy pain and it very bad when im up walking around.  I can hardly do anything.    Im so ready to feel better. I was suprised to see these other posts up here with the same symptoms and hardly any answers  :(

Hi I'm 24 years old and I started having severe abdominal pain when I was 22 I started in my left side and when it would get really bad it would move all the way around to my right side and down under my belly button. Now I've been checked for everything as well. No problems they say. I don't eat gluten or dairy anymore and that helps a lot with the pain. But when I get stressed or sometimes not even stressed it comes back. I believe you know your body better than any doctor and you know when somethings wrong. The very first person to really help me was a Nature Path he put me on Magnesium complex tested me I also need potassium. Well it helped a lot. No Joke I was in and out of the hospital no doctor knew what was wrong until I started my own diet and it helped a ton. Elimination dieting and making sure you don't get constipated or the opposite loose bowels you'll feel better. Make sure you're going to the bath 2 times a day. No more not less. well as long as it's not more than 3 times a day. I know TMI but your stomach will start to feel better. I hope this helps!

I am currently 22 and so many of these symptoms remind me of 3 years ago when I first went gluten free. Since going strictly gluten free and not cheating at all I have felt a lot better, but there are also some other issues that I now know attributed to the severe pain you are all talking about. The first was somewhat easily fixed after having a very specific ultrasound done it was realized I had several hundred gallstones that required me to have my gallbladder out about a month after the scan. That happened in May of 2011, and during my surgery they found that I also had an extremely narrow duct that probably would have eventually caused severe pain from normal use even without the stones. The other thing that I know causes some of the deep pain some of you have talked about are my ovarian cysts which unfortunately there is no treatment for. I was first diagnosed with ovarian cysts 5 or 6 years ago when I was still in high school and basically what I was told was that there was nothing they could do unless they got to be so big that they needed to be surgically removed, but that was a worst case scenario. Since that initial diagnosis I probably get them at least every other month and with them comes the deep pelvic pain that has been mentioned and also it causes everything else in my lower digestive system to become inflamed and usually leads to some diarrhea and pain after eating. I have come to terms with this and one thing that I have found that makes it worse is corn and so when I feel a cyst coming on I try to avoid it at all costs which, due to my gluten free diet, usually means I am eating rice for about a week until the cyst(s) goes away. I know that I just gave you several different things to think about but I just want you to know that there are others out there and if my story can help one of you then that is what is important.