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Crohn's Disease / Ulcerative Colitis Message Board
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Old 04-09-2008, 08:01 AM   #1
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Ulcerative Colitis (in Children)

My 11 year old son was diagnosed with Ulcerative Colitis yesterday.

He has been suffering with bleeding (with and without stools) and mucus (with and without stools). He has been suffering pain and frequent trips to the toilet for the past six months now. He had investigative surgery last month and a biopsy of his lower bowel was taken. After the surgery we were told that he had Proctitis. But we were given the results of the full biopsy yesterday as Ulcerative Colitis and and he is being transferred to our main Children's Hospital in Bristol to see a consultant, as a matter of urgency. He is still bleeding daily and is still having to use the toilet frequently (numerous times a day). We have been told that further tests will probably be carried out by the specialist to look further up into his bowel (?). The general surgeon that we saw could not answer any more of our questions as it would be referred to the specialist who could enlighten us more to the condition and treatment etc.

However, on googling UC (as you do!) I noticed that some other symptoms that he has had for some 18 months or so are attributed to UC (like skin rashes, eye problems etc). Has anyone else developed any other symptoms of the eye or skin etc that relate to UC?

I would really like to hear from anyone who has a child suffering from this as I was told by the consultant that it is quite rare in children of my son's age. My poor boy handles it so well though - considering - it is embarrassing at any age but children can be so cruel.

We hope to have a referral appointment within the next 10 days and will post more after that.

Thanks for listening.
Claire (Worried Mum) xx

 
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Old 04-19-2008, 07:43 AM   #2
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Re: Ulcerative Colitis (in Children)

Hi Claire,
First, I'm so sorry you are facing a bowel disease and that your son has been through so much already at his young age. I too have a child with ulcerative colitis, although she's not so young anymore (21). I'm posting a government site that I think will have helpful insight for you as well as some links to sound information:
[url]http://www.nlm.nih.gov/medlineplus/ulcerativecolitis.html[/url]

My daughter did not have the eye or skin problems of UC, but her attack came on very quickly and lasted 4 months. She ultimately had her colon removed and now has an internal pouch called a j pouch.
Here is a governement link to information on extraintestinal manifestations of UC that might also be helpful to you:
[url]http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1925026[/url]

My only other words of advice right now would be to make sure you keep a running list of questions for your doctor so that you won't miss anything when you meet, and ask about and know the risk of any medication they want to prescribe. My daughter developed avascular necrosis from the steroids they used to treat her and she was only on them for 4 months. We never knew about this risk and sometimes the benefit of the medication does outweigh the risk, but if you don't know what the risks are, you cannot make an informed decision. Do as much research as you can, and try to keep a journal along the way. It may be helpful to you one day.
Warm wishes to you as you make your way through the coming weeks and that you find wonderful care for your son!
__________________
Mom of 21yo daughter with AVN of both knees, right elbow and possible other places.
Being evaluated for treatment options.
Hate Prednisone!

 
Old 04-20-2008, 12:32 AM   #3
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Re: Ulcerative Colitis (in Children)

I have had UC for 21 years now, its not as bad now as it was in the beginning. I have excema on my hands and one eye lid. Other than that I don't have any other rashes or sight problems, however I do have a daughter that has had cataracts. I think there may have been a link between me taking steriods before i had her. She shows no signs of having UC - fingers crossed she doesn't.

 
Old 07-11-2008, 12:16 AM   #4
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Re: Ulcerative Colitis (in Children)

Hi there,

My son had an endoscopy and a further colonoscopy yesterday and we have been told he now has Crohn's Disease. I don't know too much about how this differs from UC apart from the fact that UC affects all the colon whereas Crohn's affects anywhere between the mouth and anus.

He starts his treatment next Thursday 17th July and, as he is taking part in a study which involves around 80 children in the UK, he has to have regular bone scans, blood tests and urine samples. His treatment will either be steroids or a special diet (which is like astronaut food). We will not get to choose which treatment he receives, it will be chosen for him, as part of the study.

I hope the treatment will put him into remission and then we can keep him there.

He is 12 years old next month.

I would be most grateful for any advice.

Many thanks,
Claire x

P.S. Sorry, still in a state of shock at the moment, don't think that it has quite sunk in - with either of us!

 
Old 08-29-2008, 06:23 AM   #5
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Re: Ulcerative Colitis (in Children)

Hi everyone,

My son is having treatment for Crohn's Disease (he was diagnosed last month). This involves him being on a liquid feed diet for at least 6 weeks and he is receiving this feed by a NG Tube into his stomach. I was wondering if there were any other mothers out there whose children are undergoing this treatment for Crohn's or UC? His feed is Alicalm that we have to make it up (in the blender!) and then he feeds himself through his tube via an open ended syringe. He is now five weeks into it and is still having problems with his bowels and stomach cramps and is still passing blood. He did put on a couple of pounds but then lost them again and has now put on a couple more but all in all his weight fluctuates, even though he is having six fees a day and all the calories and nutrients that he needs to consume in a day!

He suffers alot with Conjunctivitis and is now complaining of pains in the backs of his knees and legs. He has been getting rashes for some time now and I don't know if all this is a side effect of the disease or the treatment? He is 12 years old, 4 feet 11 inches and weights 5 stone 7 pounds - 5 stone 12 pounds - depending on what day it is! - it does fluctuate that much!.

He is seeing his gastroenterologist next Thursday (4th September) and has to have a DXA scan that day also. We have been told that he may have to keep his tube in for longer but we have yet to know if the treatment is working.

I would love to hear from anyone else who knows someone who is currently on this treatment. It is all very new to us and we are still trying to come to terms and get to grips with it all!!

Many thanks,
Claire x

 
Old 08-29-2008, 08:11 AM   #6
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Harry HB UserHarry HB UserHarry HB UserHarry HB UserHarry HB UserHarry HB UserHarry HB UserHarry HB UserHarry HB User
Re: Ulcerative Colitis (in Children)

Claire,

I have read your posts about your son's problems with UC and now with Crohn's disease. I am very sorry.

I do not know if you have investigated the use of probiotic supplements to treat these IB-diseases.
I have read about using VSL#3 a probiotic supplement to improve 95% of the IBS. There is a Sticky thread at the top of the IBS board of Healthboards that may be of interest to you. Although it started out about IBS -- post #12 on page 3 is about a member with UC that is being dramatically helped.

I have also read that studies were being under taken to investigate the use of probiotics to help Crohn's in children.

Doctors generally don't use this more natrual type treatment because they are trained to use medication that are drugs. So, don't be surprised if your doctors are not familiar with probiotic treatment.

I wish you son well---Harry

Last edited by Harry; 08-29-2008 at 10:19 PM.

 
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