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05-23-2010, 12:23 AM   #1
DustyKat
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Hope you guys donít mind if I hang out here. I donít have Crohns but my daughter does. Roo is now 18 and was diagnosed with CD when she was 14 in 2006.

When she saw the gastroenterologist after her diagnosis he said it had most likely been present for 2 years due to the appearance of the clubbing of her fingers. Looking back I can certainly remember her being sick for at least 18 months. Initially, perhaps for even 12 months, her symptoms were occasional but in the last 6 months of that time they became very frequent and eventually at least weekly. Her symptoms most the time were upper epigastric pain associated with vomiting and mostly, but not always, a headache, oh and sore knees and eyes, they eventually diagnosed Abdominal Migraine and it goes without saying that the treatment for that didnít work!

Things finally came to a head at the end of June í06 following a fall at school. A couple of days after the fall Roo started to complain of pain around her right kidney region. It escalated 4 days later to the point that she was in tears so we went to the GP. He thought she may have damaged her kidney in the fall and she went for a renal ultrasound, which she found almost unbearable due to the pain it caused. The results came back with a query of a congenital kidney problem and so we then went off for a nuclear scan, which returned a normal result. Later that evening the pain changed to a generalised abdominal pain and through the night became so bad that the GP had to come and give her a shot of Morphine and we went off to the hospital. They continued to relate the pain back to the fall and so decided to do pancreatic enzymes and bingo; they were through the roof, so they diagnosed Pancreatitis and admitted Roo. That all fell apart the next day when her next lot of bloods came back normal. Things seemed to settle with NBM and IV Morphine and she went for an abdo CT scan, this also returned a normal result and Roo was discharged. Within 24 hours the pain started up again and over the next 5 days became increasingly worse and then vomiting and fever set in so back to the hospital.

The day before Roo went back to hospital a distant relative rang and told me her Crohns story. Well, I naturally went into Google mode and symptoms started to fall into place. The morning after admission the paediatrician came by and I told him about Rooís relative but he ruled that one out on the spot. Thank god I was armed with enough information to insist that there was no way she was leaving unless they could prove to me she didnít have Crohns. The paediatrician and the surgeon decided on further tests, scans etc, I had no issue with the conservative approach but I knew something was seriously wrong, so basically told them I was sick to death of doctors dancing around the edges. I donít know, I just felt that they needed to actually see her bowel. As it was, when the bloods came back that were taken in emergency Roo was septic. She went straight to theatre for a laparotomy and appendectomy and came out with a right hemicolectomy, ended up with 59cm of bowel being removed. Her bowel was perforated and infarcted and in the surgeons words it was Ė ďa mess with pus everywhereĒ. It breaks my heart to think of the pain she must have been in and the tolerance she must have built up.

It took her about 6 months to recover from the hospital admissions and chronic illness. When she was discharged, although not tall, she only weighed 34 kilos.
Roo eventually went through puberty about 6 months post op at 15. She has had short bowel syndrome ever since. Tried Questran but found it too unpalatable, also tried Metamucil but that caused too much painful cramping so she plans her eating around her day. Due to her moving she has had to change specialists and the new guy is trying her on Imodium, not sure how that is going.

Last year, her last year of school, was hard and I think she went off the rails quite a bit, non compliant with meds etc. It is a very fine line between saying something or nothing. Although she had a great bunch of teachers and I had spoken to them frequently, in an informal manner, about her issues, they still didnít get it. I ended up arranging a meeting with all her teachers and the executive staff. I prepared a *report* outlining her history and her current issues and the impact it has on her day to day functioning. It took this for them to finally realise what Roo was dealing with and will continue to deal with throughout her life.

Fast forward to now and Roo has finished high school and moved away to university at the beginning of this year. I was worried about her moving so far away and was concerned about her taking responsibility for her health. I am so relieved to say that I havenít seen her so happy, confident and in control in a long time and she is thriving on university life. I can only hope that she can get through her undergraduate studies without a flare up. Roo has been in remission since the surgery and her meds since that time have been Imuran 50mg daily, Folic Acid 3 times a week and B12 3 monthly.

If you have read this far thanks for listening!
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Last edited by DustyKat; 05-29-2010 at 06:16 AM.
05-23-2010, 01:23 AM   #2
Entchen
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Hi, DustyKat. Welcome! I so admire you for having that level of insight into what was happening with your daughter and for your willingness to serve as her advocate. Crohns and surgery is an awful lot for a teenager to deal with. I'm hardly a teen (30), but my mom has also been wonderful (in fact, she's flying across the country as I type this note, to come help out for a few days), and I can tell you that her support absolutely means the world to me. Roo is lucky to have you!
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05-23-2010, 06:12 AM   #3
My Butt Hurts
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Welcome to the forum DustyKat. Glad that you found us! Glad to hear that Roo is doing well her first year away at school.
05-23-2010, 03:01 PM   #4
PeninsulaLil
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Glad you found this forum DustyKat! It is hard enough to let a child go off to university without having the extra worry of Crohn's. Good for you for being supportive of her choice to move out of the area. This forum is a great place to get advice, to worry out loud, complain or share successes.

Welcome!

Lilly
05-23-2010, 03:17 PM   #5
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Welcome Dustycat,
Wow what a story. I can't believe the way docs try to fob you off sometimes. Thank goodness you insisted and got Roo sorted.
Gail
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05-24-2010, 02:48 AM   #6
DustyKat
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Awww, thanks guys for all the kind words and thoughts, and I'm really glad I found this forum too! I just know I'm going to find heaps of great advice and friends here. Thanks for having me!
05-24-2010, 04:20 AM   #7
Dras
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Wow, that sounds just awful. I'm so glad she's gotten a diagnosis and treatment. The worst thing is not knowing whats wrong and having the doctor prescribing some sort of anti acid, just to have you back there suffering the very next day. The best of luck to you and Roo.

Sim
05-25-2010, 10:20 AM   #8
CDDad
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Hi DustyKat,
Another "wow" story. It's especially sad when kids have to endure Crohns.
When you mentioned clubbing, I though how my various GI docs over the years have commented on my fingers. I have it - I guess just another marker of Crohns or other autoimune disease.
Anyway, I'm glad Roo is doing better!
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05-30-2010, 06:32 AM   #9
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Hi Dusty, sorry I missed Roo's story til now. We too had early signs with our son that we put down as just sensitive stomach issues. The docs were never concerned at all until a two month flare w/ bloody d.

Sounds like things are going ok for now. Best of luck to you and Roo.

Mark
05-30-2010, 11:12 AM   #10
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Hi Dustykat & Roo
and welcome

What a yummy mummy you are!
and a bloody good job you insisted on more tests! That's what mums are for! I'd scream and shout too if it was my daughter.
hopefully Roo is settled now with her meds and managing it during Uni life, poor love, I wish her well, she's gonna do just great!
glad you found us, lots of friends here
lotsa luv
Joan xxx
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NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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06-02-2010, 07:19 AM   #11
DustyKat
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Thanks again everyone for your warm welcome and wishes.

Roo has settled into university and absolutely loves it, that and the city life. She now finds home TOO quiet and doesn't know how she survived here for 18 years. LOL.

Fortunately the university she attends has a very large teaching hospital next door, it's a far cry from the 3 hours we had to travel (one way) for her to see a specialist when she was living at home. She has found herself a new GI and says he is really nice, so that's a relief.

CDDad - I had always associated clubbing with heart/lung issues, I didn't realise until then they were associated with Crohn's. I couldn't see it when he mentioned it in his rooms so of course the first thing I did when we got in the car was have a closer examination but I still couldn't see it. Obviously too subtle for me to pick up on!
06-02-2010, 09:21 AM   #12
acg101
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Hi Dustykat & Roo
and welcome to the forum.
I am glad Roo is settling in school and has the opportunity to be near a top rated GI.
Diagnosis of Crohn's many times goes the wrong way. for the past 16 years I see one of the best GI in New York and they still not sure if it is Crohn's or Colitis.
Please dont hesitate to ask any question.
Best wishes
acg
(Dan)
08-09-2011, 03:43 PM   #13
tiloah
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Dusty, do you mind sharing how much psyllium Roo is taking? My doc told me to use Benefiber. I think it's working but it's causing some gas/cramping. The recommended dose is two tsp. three times a day and so far I have only used one tsp. a day. I'm too scared to mess with things down there. Is the psyllium working for her?
08-09-2011, 04:35 PM   #14
DustyKat
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To be honest, I'm not sure exactly what she takes now but I think it is about a decent teaspoon in her her morning coffee and that is it. I believe her vegan diet and avoidance of oil is playing a role in her reduced bowel movements as well. She has gone from 6-7 motions a day to one. Sarah found the "commercially" prepared products caused the side effects you are also experiencing. The natural psyllium husks that you buy in health food stores or that section in the supermarket doesn't seem to have any side effects for her.

Matt has started using it too. He doesn't restrict his diet and interestingly he is using the dosage you are. Sarah would have put him onto it so perhaps this is the amount she was using before she changed her diet. Matt has not complained of any side effects.

I think you are right to take things slowly as it can be a fine line between diarrhoea and constipation. It will be trial and error but going about it the way you are shouldn't cause any problems.

Good luck, I hope it works for you!

Dusty.
08-09-2011, 04:47 PM   #15
scottmyster
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HI dustykat, and welcome i am glad roo is doing great and i hope roo will do great in the future. best regards.

scott
08-09-2011, 05:05 PM   #16
tiloah
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To be honest, I'm not sure exactly what she takes now but I think it is about a decent teaspoon in her her morning coffee and that is it. I believe her vegan diet and avoidance of oil is playing a role in her reduced bowel movements as well. She has gone from 6-7 motions a day to one. Sarah found the "commercially" prepared products caused the side effects you are also experiencing. The natural psyllium husks that you buy in health food stores or that section in the supermarket doesn't seem to have any side effects for her.

Matt has started using it too. He doesn't restrict his diet and interestingly he is using the dosage you are. Sarah would have put him onto it so perhaps this is the amount she was using before she changed her diet. Matt has not complained of any side effects.

I think you are right to take things slowly as it can be a fine line between diarrhoea and constipation. It will be trial and error but going about it the way you are shouldn't cause any problems.

Good luck, I hope it works for you!

Dusty.
Wow thanks for the quick response! I appreciate it.

I will have to experiment with different things and see how it goes. I can't even imagine not eating processed crap anymore...
08-09-2011, 05:16 PM   #17
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Oh, I got such a fright when I logged on and saw the title of the thread. I thought fate was taking a terrible twist and you, Dusty, were going to tell us that you'd been diagnosed too. Then I read the first post and looked at the date. Whew!!!
It's good to read - what a long way Roo has come. And lessons for all noobs and the undiagnosed.
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08-09-2011, 05:36 PM   #18
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This literally scared the weebie-jeebies outta me seeing this post by you with that title !! LOL
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08-09-2011, 09:15 PM   #19
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Me too! So glad it's not you, too.

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08-10-2011, 05:07 AM   #20
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Oh Dusty!! You were so young(yeah, right) and naive back then!! Seems like years ago!
08-10-2011, 07:32 AM   #21
DustyKat
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Oh no!!!

Awwww, thanks guys... At least you had an excuse for your surprise. I looked at the thread title and sat there thinking, why have I got a thread entitled newbie?!?!?!

Dusty.
08-10-2011, 07:44 AM   #22
acg101
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Hi DustyKat,
An inspiring story of perseverence. It is especially difficult when children have to endure CD and all its associated implications.
I'm glad Roo is doing great at school and wishing her all the best.
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08-10-2011, 08:42 AM   #23
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Dustykat, BOTH of your kids have CD? I was told that the chance of inheritance is 9%. That's crap luck.

My 13 year old, Sarah, has TERRIBLE Crohn's Disease. I've been moderately worried about her 2 year old sister, but after reading your stories I'm FAR more worried.
08-11-2011, 04:59 PM   #24
DustyKat
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I was told that the chance of inheritance is 9%.
I don't want to say this but I can't let it pass either. If you have child with CD then there is a 30% chance of another sibling having CD as well. Yes, unfortunately my two drew the short straw BUT there are others here that have strong family history of IBD but not all the children are affected.

I know you will never stop worrying and that is normal and natural. It is hard to see any good in this but just know that with your own experiences of the disease, and now that of your daughters, that nothing will go unseen or unnoticed and if it ever did come down to it she would have the best darn advocate ever. It goes without saying that I wish, hope and pray more than anything that Elizabeth does not have CD.

Dusty. xxx
10-06-2011, 03:11 PM   #25
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Aww...That isn't fair...Hard enough for us to have it...let alone our kid! I hope I only come here and rant/rave about me having crohns...PLEASE? S
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10-06-2011, 03:58 PM   #26
DustyKat
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That is my wish for you to Sue.

Dusty. xxx
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