Catherine
Moderator
- Joined
- Jan 30, 2012
- Messages
- 3,912
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.
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.
Bless you both. :heart: 
