• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Our journey to dx looking back 2 years on


Our journey to rule out ibs, stress, beta thal & alpha thal, too much exercise and false steps at long the way.

Part of the reason for this post is to remind you make sure any 2 opinion dr has the actual results themselves or has the test repeated. Don't take a previous dr word a test was clear if you don't have actual result for your new dr to review.

2009 Sarah was dx with a stress related illness. We were offered blood test for iron levels. This testing showed low/normal iron. We were told she was doing to much exercise.

2010 saw a sports gp, dietician, paed, it was found we could only maintain her ferritin levels with iron supplements. She was then 14 and was decided we would work on increasing her weight. We played around with increasing and decreasing her swimming sessions but it make no difference to her iron levels.

2011 had two faints while exercising. We saw a neuro. She was dx with low blood pressure and postural hypotension. Her weight was 56kg and 173cm at this time was training between 8-9 sessions per week.

May 2011, the episodes of severe pain begin as they only lasted less than 24 hours they were gasto and stress. She also had borderline anemia, hemoglobin 114 and ferritin 9

June 2011, pelvic ultrasound was performed looking for ovarian cyst rupture. This showed a thickening of the bowel. We were told it was clear. She was dx with stress and ibs.

August 2011, we changed GP, he did lot of blood tests, ESR 44 mm/hr (1-10), CRP 8(<5) ferritin was normal at 30 but s iron was 3 umol/L (5-30) hemoglobin 106 (110-160).
Sarah agreed to take iron tablets every day for two months and we would retest.

September 2011
Thalassasemia beta was tested for an excluded. Borderline ferritin level and mildly elevated inflammatory markers. Started 6 month oral iron trial, and were going to retest if still borderline to rule out alpha thalassasemia trait.

October 2011
Hemoglobin dropped to 91, ferritin increased to 71, S iron dropped to 2, s trf sat to 4. We were now giving iron supplements getting worsening hemoglobin. Dx iron deficiency anemia and ibs. Missing on average 1 day a week school due illness. We cut down on swimming sessions hoping this will help. I make the decision that her health is not good enough to complete her open water swim.

November 2011
Tested positive for lactose intolerance and boardline fructose malabsorption. Initially get better on the fodmaps diet. She stops swimming training altogether.

December 2011, has losted 5 kgs. We are getting really concerned. Blood test done, almost no change in hemoglobin or ferritin. GP decide to try rule out alpha thal.

We decide to stop iron tablets hoping ibs will improve. Her stomach ache begins around 4pm (mild) as the night progress it gets worse. Now has had pain for 7 straight days.

Even although we stopped supplement iron ferritin rise to 162.

Thalamassemia forum, advices that the Amenia that best fits Sarah is Amenia of chronic disease and if alph thal is not present, ACD should be investigated.

Sarah's father arranges, a three day job for Sarah. She stay with her father during this time. She would later tell us walking now causes her pain.

Christmas Eve
5 hours spent in the emergency dept with stomach. Hemoglobin 90 iron 2 transferrin1.6. Most likely viral illness with chronic fractures back to the gp for referral to GI.

Christmas Day
My ex husband is having the girls from mid-morning and for the following 3 days. He decides Sarah needs to go to emergency again. I met him at the emergency dept and he leaves before she is seen. I find difficult to answer the questions about why she is worse than last night. Not only is she tired because spent another 6 hours emergency she upset father decided to continue his Christmas plans without her.

3 January 2013
Just received referral letter from doctor. Doctor requested a copy of the ultrasound from 6 month a ago, it's not clear like we were told.

It now looks like she has anemia due to ACD. They are thinking inflammatory bowel disease.

Having problems getting appointment, due to summer holidays. First available appointment is last week of January. Decide to go on the cancellation list.
I am really scared.

Sarah's is now in pain all of time. Her pain is no longer relieved by changing position. She sleeps between 16-20 hours per day.

10 January 2013
Get appointment today with GI.
She believe alpha thal is unlikely but needs to be rule out.

She also believe Sarah's iron levels are zero. Ferritin is a inflammatory marker.

It is decide hospitalised is an option if weigh drops further. Now 48.5kg, 172. There is no fat left, and her body is starting to use muscle.

Can't believe she was swimming competitively only two months ago.

Started ensure 3 times daily with full meals.

Colonscopy/Gastroscopy booked for 8 February

21 January
Home from work, Sarah is very sick. I am waiting a call back. I have spoken to her GI today and have asked for her to be hospitalised due to continuing weigh loss.

Just got a call back from the GI, her boss will fit her in as soon as we get there, she doesnot have any opening.

Our GI sees me in the waiting room, tells me they think it is Crohn's but the only thing that doesn't fit is there are no bowel symptoms. We need to see her boss as he has more threate time. She also tell me her boss has seen Sarah in waiting room and knew just by looking at her that she was the urgent patient

The boss, see us and the colonscopy/Gastroscopy is booked for the Wednesday. He tells me that he will find answers for Sarah. He talks to the receptionist tells her just to fit her in on Wednesday.

24 January 2012
My mother comes down to help. My parents couldn't believe how bad she looked at Christmas. She is much worse now. I now feel that I can't leave her without adult present at all times. The responsibility of looking after her is to much for her sisters aged 15 & 12. My family is so concerned my sister offers to come home and help with her care. This is no small offer as she and her family are living in the Middle East and this would mean putting her two boys out of school.

25 January 2012
Sarah is dx with crohn. Her colonscopy just looks like Crohn's. Need to wait for MRI and biopsies before starting treatment. She now weight 44kg.


Super Moderator
{Hugs} to you and your lass Catherine. :ghug:

What a journey you both had in pursuit of diagnosis and no doubt it was filled with both heartbreak and frustration. :( Bless you both. :heart:

Our GI sees me in the waiting room, tells me they think it is Crohn's but the only thing that doesn't fit is there are no bowel symptoms.
Generally speaking, it's a shame that when so much other evidence exits of a chronic and worsening condition, including abdominal pain, that diarrhoea and/or blood still seem to be the only consideration when bringing Crohn’s into the fold. Not only does doing so unnecessarily delay a diagnosis it very often leaves the sufferer feeling frustrated and unvalidated and less likely to seek help.

Thank you for posting Catherine.

Dusty. xxx
I'm so sorry that you and your daughter went through this experience and so sorry that she ended up with Crohn's. As a parent of an undiagnosed, but suffering child, I cannot thank you enough for sharing your experience. It's exceedingly helpful to hear how continuing to push and trusting your instincts ultimately proved very helpful to your child. Thank you for sharing your experience.
I wonder if the doctors of the world 'really' know what "running our kids thru the ringer for so long" does to them... This is a silly wish, but wouldn't it be nice to have all the GI doctors actually have a child themselves that has crohns or UC


I can't fault our GI in this process, we had a dx within 15 days of our first GI appointment.

Our problems were actually before getting a GI referral. Sarah is considered an odd case. I will update her history as it come back to me.
Thanks for posting I think your story is very helpful for parents who are still trying to figure out what is wrong with their children!



I know no doctor wants to miss diagnosing a sick kid or anyone for that matter.

But the GP did not read the report of the pelvic ultrasound properly. He told us it was clearly clear and dx her with ibs again without any testing. The report showed a thickening of the bowel of unknown cause. It also said if there was any reason to believe IBD was a clinical possibility they should be perform a MRI not a CT scan due to her age. The operator had told us the report would give us answers. He told the operator shouldn't have said anything they weren't a doctor and didn't know what they were seeing. He was more interested in running them down.

Our second opinion gp, took my word the ultrasound was clear without requesting a copy.

After our trip to emergency, the gp we saw to get the referral, obtain a copy of the ultrasound and was very surprised at the results from the ultrasound.

When we saw his early in the day, he was questioning Sarah whether she had started the weight loss by dieting, he even questioned me separately about whether I believe she had an eating disorder. After seeing report, he completely changed and believed it was IBD.
Catherine, my comment was in response to Brian's mom's post.

Not sure what happened with the US report. I'm curious to know the actual wording of the radiologist's conclusion; do you have it? It's really frustrating and disappointing that the US showed something pointing to the possibility of IBD but that it wasn't noted, or was for some reason dismissed.

The question I have is what can be done to help doctors, especially gps and pediatricians, identify IBD without the long delay that so many people suffer through. Doctors see a lot of mildly anemic teens, a lot of teen girls with weight loss (due to dieting or eating disorders), a lot of stomach complaints and only a rare few will have IBD. Many doctors think bloody diarrhea and fistulas when they think of Crohn's and it's hard for them to consider the diagnosis in people who only have abdominal pain or weight loss or anemia. So better education could help.

(My son was lucky- he only had symptoms for 4 months. He presented with non-bloody diarrhea and weight loss. The health services doctor at college was pushing the diagnosis of stress and I asked for a CRP which she ordered and it was elevated. The GI doctor who saw him suggested IBS which really confused me, since he had anemia and really elevated CRP but agreed to scope and the diagnosis was made. If I hadn't asked for the test or redirected the GI doctor, I don't know how much longer it would have taken.)

my little penguin

Staff member
I think part of the problem is Ibd in teenagers is rare - virtually unheard of in the under 14 crowd( for the average ped). The only reason DS has a dx at all is not due to our old ped ( "he was just a skinny kid") but because I didn't need a referal to our Gi and our Gi continue to push for answers even though DS didn't have classic signs of Ibd .

As far as ultrasound reports most docs skip the parts they don't think will have any useful info. We had three specialists read one of DS's ct reports .
The report had the wrong patient history ( not my kiddo 's)
But since each specialist knew my child's history no one but me bothered to read the whole thing.

When you are used to reading lots of technical reports you automatically scan the document and focus on the areas you know will give you the info needed period .
I know I am guilty of it as are others not just medical professionals .

At the end of the day it comes down to " you know your kid best "
So if you think something is wrong try to find a doc who will listen to you and help you understand what is going on.


Ultrasound report is typed below:-

Pelvic ultrasound

Clinical Notes: ovarian cyst rupture

Findings: The uterus is normal in size and shape on this transabdominal study.

Normal endometrium has a combined width of 6 mm. It is secretory in type consistent with the menstrual phase.

Ovaries are identified with the left just over 5cc and right 15cc in volume.

Neither adnexal region is tender transabdominally. A small amount of free fluid in the iliac fossa is shown. Normal kidneys.

Retroperitoneal and mesenteric adenopathy is present.

One of the bowel loops in front of the uterus is slightly thick walled and vascular.

Significance of this is uncertain however, it is different to the adjacent loops which contract and not appreciably thickened? inflammed? small or large bowel.

Appendix cannot be identified.

Comment: No uterine, endometrial or ovarian abnormality.

There is no evidence of an ovarian cyst or mass.

A small volume of free fluid in the midline and right fossa. Enlarged mesenteric and mid retroperitoneal nodes.

A thick walled mildly vascular loop of bowel is present in the midline in front of the uterine fundus, the significance of which is uncertain.

I am not certian whether this is small or large bowel.

Depending on clinical progress this patient may benfit from further imaging of the gastrointestinal tract.

In a patient of this age ionising radiation should be avoided if possible

Gastronenterologist review may be preferred in the first instance.

If inflammatory bowel disease is a clinical possiblity then perhaps MR enterography
I have to second XMDMom, I hope you filed a complaint against that doctor. That is really terrible and If you don't complain he will just do the same thing to someone else.


Super Moderator
IMO there is just not enough awareness of IBD within the medical community but that does not absolve them of responsibility.

I have heard time and time again of not wanting to label patients but they are often quick to label someone with an ‘easier' diagnosis and when it comes to teenage girls an eating disorder is one that springs to mind. I am in no way suggesting that it is wrong for a doctor to question that an eating disorder is a possibility or any other condition for that matter because all possibilities should be investigated. But to be honest a parents input is too often dismissed, test results are disregarded as insignificant and so opinions as to what may be occurring become bogged down and fail to move past a false diagnosis.

I also know that walking into a doctors surgery does not mean an instant diagnosis, that a diagnosis is as much a process of elimination as anything else but again, failure to respond to treatment and a continuing of symptoms means there is a responsibility on the doctors part to continue to push for answers.

I should not have to threaten that I will not leave a hospital until they prove to me that my daughter doesn’t have Crohn’s disease. Yes, my daughter did not have classic symptoms of IBD, yes, she never saw a GI, yes, she had numerous normal results including a grossly normal CT one week out from surgery and yes, they had the same information as I did. If I could work it out why couldn’t they? :yfrown:

This post is not targeted at anyone, it is just how I feel after having my daughter go undiagnosed for 18 months and the heart break I feel when I read so many similar stories. :ghug:

Dusty. xxx



I am bumping this for parents with children with ususually presentations. Not all these cases will turn out to be Crohn's but keep looking for answers. Look at other possibilities remember this a Crohn's forum, and Crohn's is alway at the front of our minds. There are other conditions that could present the same.

There is only one thing worse that no treating Crohn's and that is getting the dx wrong as all treatment for Crohn's have serious side effect other that EN.

A dx of Crohns and proper treatment means Sarah now lives without pain. She is now 20 years old and living her dreams. She has been living in England for 15 months.

What I would doing different now.

- get a copy of the ultrasound report

- I would now jump at the offer of colonscopy.

- I would not allow the dr to dx my daughter with IBS, even in 2011 you were suppose to dx IBS in someone with anemia


I am bumping this post for Andrew83 as I'm having trouble linking on my phone.

Andrew this our journey to getting dx of crohn disease and no treatment. There really wasn't any symptoms that scream corhn in the first 2 years.