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Crohns-ulcerative colitis???????

Hi Everybody! This is a great site. I am glad I found it just looking for a lot of answers and trying to find ways I can help my daughter.

This is about my daughter she is 15yrs old. She started taking 4-6 motrins a day for 10 days due to ankle injury. (she was allergic to motrin when she wa 6)The first time it started was when my husband made fried rice. The rice was about 3-4days old and he added a lot of spicy thai green chillies. We all ate it but my daughter started complaing of abdominal pain. Next day she had diarrhea with a lot of mucus and abdominal pain. There was no bleeding at all. Took her to the pediatrician she had blood tests done and said it may be gastroenteritis.She referred us to a ped GI. The GI ordered a blood and stool test. All the results were normal. THE ESR was elevated. The diarrhea and the pain stopped after a week. She was back to normal. On April went out with cousins and ate at a small restaurant which was not very clean. 2 cousind ended up with 2 days of diarrhea and my daughter started having the same problems diarrhea and abdominal pain. Took her back to the GI and she ordered upper GI series with barium which was normal. Then she ordered Colonoscopy with biopsies. The Dr who did the GI came to me after the procedure and told me it looks like Crohn's. I died a thousand deaths in those few seconds. He also gave us some pictures of the biopsies and she had ulcers and edema as he explained. Went to get results from the GI and the colonoscopy results were inconclusive with all the biopsies they did they could not give a definite result. The GI doctor was giving us the run around like it could be this it could be that, gave us a prescription for IBD Serology-7 blood test and started her on Entocort and Apriso. The test she ordered was as she said was to confirm a diagnosis. Went to her the following week to get the results. (She was anemic, heavy periods and bleeding due to biopsies and 7 tubes of blood drawn for the IBD 7 test.)
The IBD serology-7 test tested negative for crohn's and positive for Ulcerative colitis. Then she tells us this test is not accurate and we have to wait and watch. We were very upset. She also told us it could be nothing just inflammation. Then she says it will go away by itself after treatment. Then again it could be the beginning of IBD. We are so confused because the medication she prescribed is causing a lot of side-effects. My daughter is my heartbeat and I cannot see her suffer like this. Are there any other tests available that could give us an idea about her problems. We are also looking into getting a second opinion. I know this is long, but thanks alot for listening/reading.

Crohn's 35

Inactive Account
Hi Naz, and welcome to the forum. I am so sorry you are going through this nightmare with your daughter and your daughter must be suffering. Her diagnosis is alot like many others including myself with Ct scans, small bowel follow throughs, and colonosopies, too many to count and took 8 months! Sorry to scare you but everyone is different. There are some potential Crohnies on this forum and are in the same boat. I cannot tell you how hard it can be to actually find it. Usually colonscopies show great results but I had to have a Endoscope and follow thru to the end and shoot barium through a tube, yeah it wasnt nice but it was a confirmed diagnosis. My sister who has Crohns colitis took longer and bled heavy. I am not a bleeder. Stool samples can help but I had one just this past few months from a gastro bug and didnt show I had Crohns. It seems like it hides when you are trying to find it for a lack of a better word and taking biopsies in an exact spot. I have ulcers (5 of them ) and have been on many meds. Entocort is for mild stages and has very little side effects. I have been on a "sister" drug Pentasa and some people dont tolerate it well, burns the stomach. BTW never give a IBS person Ibuprofen, it makes the gut worse, so do Nsaids. Tylenol is a better choice.

Getting a second opinion maybe a great idea, I am assuming you are from the US, maybe you could tell us what state you are in so someone could recommend a Gi for your daughter. Please dont let too much time go by. If she does have Crohns (it never goes away, only remissions). Try a second opinion, I would, if my daughter got this sick I would go to heaven and earth to find one. Big hugs to you, try to get her to remain calm stress is an agrivator. Sorry this is long, and I am not on here much, but your story touched me cause I am a mom. I read that Apriso should be only given to ages 18 and over. Let us know how you make out and lots of people here to help give their insights and experiences. Take care.


Super Moderator
Hi Naz,

I am new to this forum as well and have an 18 year old daughter with Crohn's Disease. I understand what you are going through and how heartbreaking it is to see your child sick and feel so helpless. Have a look at my introductory thread:


This is a great forum with heaps of support and advice. Hang in there and do whatever it takes to get the answers you need. It is well worth the fight.


To save time...Ask Dusty!
Hi Naz, after reading this forum for a while, I'm surprised anyone's ever been dx with crohn's. I'm equally surprised at how fast my son's dx came down. From his first "bad" symptoms to the dx was less than 2 months.

Is your daughter still flaring? I know how emotional this can be for a parent and I hope you get some better news soon.



Hi Naz
and welcome

so sorry about your daughter, I can only concur what Penny has said, but to also add that Prednisolone might be a better choice than the budesonide (Entocort) as budesonide is only a 10% derivitive of Pred, and also an endoscopy (down the throat camera) would be a better choice if the inflammation is in the colon.
hope you find answers soon, it was bad enough for me searching for answers, it must be hell for all of you out there with children with this horrible confusing unpredictable disease.
glad you found us, lots of support here, and lots of friends
lotsa luv
Joan xxx
Thank you so much Jettalady for your advice. The day she had her colonoscopy she also had an endoscopy done which was normal. So I guess we have to wait and watch.
We are in Chicago any Dr recommendation would be greatly appreciated.
For Apriso I did bring to the Drs attention that it was for years 18 and older she says your daughter has the built and height of an 18 yr old. I am so confused, but thanks for your reply it doesd help to talk to people who know about what I am going through.
Hi DustyKat
Glad to hear that Roo is doing well. I can totally understand you must have gone through. I have to be very strong because right now I feel I am on a breaking point.
Thanks for sharing Happy to hear Roo is doing good!

Hi Mark

No my daughter does not have a flare up as of now but can you share what yours son's bad symptoms were?
Hi Joan thank you so much for your concern my daughter did have an endoscopy and a colonoscopy and they did go all the way down I think up till the end of her small intestines. The Dr said the endoscopy was normal. The problem was in her terminal illieum. I am really happy I found this site I will have all you wonderful friends to talk to.

hi Naz
I would just like to agree with everything the others have said. I am a former colitis now crohnie, difficulty is that these diseases are so alike its only the last couple of years I have found out it was crohns even though ave had it for a long time.a wish you and your daughter good luck


To save time...Ask Dusty!
Hi Naz, EJ's bad days were lots (10 + times) of bloody d and the constant cramping. He missed a lot of school last fall. Our ped. thought it was constipation of all things (I still don't know how he could have drawn that conclusion) and recommended a laxative. We were stupid enough to try it and of course he REALLY had a couple of bad days after that. The good thing about that was it got EJ referred to Vanderbilt and a GI spec. and now here we are.

Hi Naz, for my diagnosis I went through a CT scan, colonoscopy, upper GI with small bowel follow through, and the IBD serology test. The CT showed inflammation in the colon so I was sent to a GI. He did a colonoscopy and said it was Crohn's I was put on Asacol immediately. When I went for another appointment after the colonoscopy he showed me that the disease was in my large intestine but he wanted to make sure it wasn't in the small intestine so he ordered the upper GI and he wanted to do the serology test as well. The upper GI showed no obstructions and no inflammation...woohoo! The serology test showed I didn't have IBD at all...he said the test wasn't reliable, he was hoping it would say Crohn's for sure (he said it could be UC though looked like Crohn's). He said I for sure have IBD. He has put it down as indeterminate colitis under Inflammatory Bowel Disease. I do like him and trust him though. Get a second opinion if you want one and getting a GI you like and trust makes all the difference. But, I will say the disease is hard to diagnose and for many it takes years. It isn't necessarily the doctor's fault. Good luck and keep us posted.


Senior Member
Hi Naz...

I'm sure you will hear lots of horror stories on how long some folks have gone un-diagnosed/mis-diagnosed. I had my very 1st incident in the early 90's, then almost 10 yrs symptom free, then a 5 yr interval... then it came back, stayed, and it still took almost another 2 yrs to get accurately diagnosed. My long winded point is this.. if they haven't been able to confirm crohns, it might not be crohns.
That is something to shoot for... to hope and pray for, okay

IF it does turn out to be crohns (or any variation or even combination of these diseases) deal with it then. You can't change the outcome by worrying about what may happen.
(I was a terrible worry wart as a parent, yet everything has turned out fine for my kids... so far). I'm not trying to pass off what you are going thru as minor, far from it. But worrying won't help, the stress you feel/endure can pass on... and stress is the absolute worst thing to do with this disease. Look for the positive, keep positive thoughts at the forefront, AND only cross the crohns bridge when you've got no other choice. All the best to you and yours.
Hi Kev

Thanks for your reply. I am getting a second opinion at U of Chicago. I am so confused because when I went to my daughters pediatrician she gave me all of my daughters GI notes that were sent to her. The GI does not really confirm Crohns or UC and in her notes to the Ped she mentions that "it is mild crohns or it could be Self-limiting colitis and only time will tell". My daughter has been feeling good no pains no watery mucousy diarrhea yesterday was a follow up visit with the GI. She always seems a little upset to see us, anyways she was checking my daughters abdomen and she poked three fingers in my daughters Terminal illieum and my daughter screamed with pain and even with all the cramps she had before she never cried or screamed. My daughter felt the dr's way of checking was not right. She had a lot of pain when we got home. She is fine now. I was just wondering... was she trying to bring on the problems my daughter had before or she is guilty of giving false diagnosis of crohns???
Please let me know what you think?
Hi Naz and welcome,
Sorry to hear what your daughter and your family are going through. It is hard and very annoying to get a run around from doctors. we have been going through the same thing with my granddaughter who is only 2 yrs. they keep giving us a run around and saying it is UC then we dont know for sure, put her on this and then that. Bring her back for more testing and we will see. same old story different day while they are the ones that are suffering so much. Watching them suffer is so hard when there is nothing you can really do for them but comfort them. Madasin goes for more procedures on August 3, 2010 and we are hoping they will be able to do something besides give her medicine that is not working. I dont know where you live but hope you are able to get another doctor for your second opinion.
We have bee trying to do that however we dont have any other doctor near where we live, as it is we have to go across the lake to another state that is an 1 1/2 drive, the next closest would be boston or new york city for us.
Good luck to you and yoru daughter
I would definelty get a second opinion if were you.


Hi Naz, thinking about you and your daughter, she is roughly the same age as my daughter Meg. A big welcome to you. How are things now? xx