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Crohn's Disease / Ulcerative Colitis Message Board
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Old 09-27-2009, 05:39 PM   #1
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Sheri91 HB User
Crohns Disease

Ok so here's my story so far..

It was around christmas time last year (2008) i started to get really run down and tired, putting it down to general winter colds and flu i just got on with it constantly taking flu capsules ibruphen etc everything you could think of, until i felt so tired n run down i started missing sixth form and work.
I then made several trips back and for to the doctors, in was then in February I came back with a positive glandular fever test. I felt relieved to begin with that i finally knew i wasnt going mad and i really was unwell.
But this carried on and on for months, with frequent emergency doctors appointments for them to just tell me constantly that what i was feeling was all down the the glandular fever, but i knew there was something else going on.
I was constantly being sick and losing so much weight. It was only when i spoke to a nurse who then spoke to a different doctor, and i was finally referred to a consultant.
But by that point it was too late, it is now june and my mum being as worried at she was rushed me to A&E after seeing the weight just drop off in a matter of days - this was before the appointment for the consultant even came through, i was admitted for 10 days - the 10 days when all my alevel exams were lol.
i had various tests, daily bloods and a sigmoidoscopy which confirmed some type of crohns or collitous.
Im being treated for crohns disease, but they think that it is very ulcerated, i saw some pictures, they werent nice.
But ive been taking numerous medications since then. asacol, prednisolone, calcium, antibiotics (now stopped) & iron supplements.
I have tried weaning off the steroids, but i get down to 15mg (which i am currently on) i start to get abdominal pains again. They feel like a bad uncomfortable type of butterflies, any lower than 15mg and im in quite alot of discomfort and alot of other symptoms also start to reappear.
My consultant has now suggested trying another drug azathioprine, obviously after checking my white blood cell count. But I am very concerned about taking this drug?
Im currently very tired all the time again, and i also seem to be picking up alot of infections as it is, my bowel movements are more irregular than regular. i have heard alot of negative feedback about this drug and i am concerned about the risks of taking it, aswell as not taking it.

To be perfectly honest im just fed up of feeling unwell and taking untolds of medication.
Who else has gone through this is going through this can give me any advice or just tell me their story because all i seem to be doing lately is worrying about this new drug, the fears of surgery and future re-investigations.
Thanks.

 
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Old 09-28-2009, 04:15 AM   #2
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kennyboy HB Userkennyboy HB User
Re: Crohns Disease

Blimey you need to take some natural remedies and get away from all that chemical stuff. Ibuprofen could have triggered it as it's gut rot in a packet. Avoid.

I suggest that you read Mary Enig and the benefits of taking coconut oil. Have a read to start with but the book you want to get hold of is specifically the benefits of coconut oil in relation to bowel disorders and crohnes as well. It's called 'Eat fat, lose fat'. One of the unusual things about coconut oil is that it doesn't need bile to digest it so it goes straight into your system as energy. That's why athletes use it and it should help you stop feeling tired all the time.

Good luck and please let us know how you get on.

Last edited by moderator2; 10-03-2009 at 08:33 AM. Reason: please do not post websites except as described in the Posting Policy

 
Old 09-28-2009, 06:28 AM   #3
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Re: Crohns Disease

Yes I realised how bad ibuprofen was afterwards lol - i dont take it anymore.

and thank you very much i will look into that - i also read something last night about coconut macaroons? or is this just garbage?
I will try and order that book into the library and have a read up.

Got my blood tests for this new drug wednesday. I'll have a read and speak to the doctor and let you know how it goes.

Thanks again.

 
Old 09-28-2009, 08:33 AM   #4
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Re: Crohns Disease

I love coconut macaroons but I wouldn't take them for health reasons. LOL.

Coconut oil, yes. You can buy it in jars at health food shops and it's a set fat like butter but is easy to make runny by popping it into a microwave for about twenty seconds. I used to pour it over my breakfast cereal with warm milk to keep it runny otherwise it will set again as soon as it gets into contact with anything cold and then it's a bit greasy but still delicious. You can spread it like butter if it's warm and that would be nice and tasty on bread instead of butter. Mary Enig gives you loads of recipes in her book which you should find an interesting adventure.
Most bowel disorders are self inflicted including crohnes. What you have to do is find the right conditions for your body to heal itself because that is what it tries to do....you can't stop that process but you can stop it from starting if you get my drift. The only time the body gives up on the healing process is when it gives up completely and you die. Just keep telling yourself that......and try to find the right conditions for that healing process to start.
Coconut oil could just be the catalyst for that to happen. Enjoy the book. I think she's a genius. All her recommendations are backed up by sound research, she's not a quack.

Last edited by kennyboy; 09-28-2009 at 08:48 AM.

 
Old 10-02-2009, 03:59 PM   #5
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Frosty6 HB User
Re: Crohns Disease

Read everything you can about the disease. There have been many advances in medicine regarding treatment for Crohn's that will hopefully help save your bowel. The collitis is the worst part of the disease and you really need to get it under control as you can. Luckily it has flare ups vs constant but the flare up is really horrifying. I will pray for you. Find the best gastroenterologist you can that specializes in the disease. Natural products may work for you, who knows? But you need to have the specialist handy in the event it does not. The longer you delay treatment, the more progressed the disease will become resulting in losing portions of your bowels.

Good luck to you!

Last edited by moderator2; 10-03-2009 at 08:34 AM. Reason: cross talk is inappropriate - please reply only to the original poster and do not discuss other replies

 
Old 10-07-2009, 06:24 PM   #6
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Re: Crohns Disease

I am a 43 yr old mother of 2 and I was diagnosed with crohns 6/92. I have had 2 bowel resections and am currently on HUmira 2 times per mo. I finally am having normal bowel movements and can eat almost anything I want with very little to no abdominal pain. If my crohn's starts acting up again I will insist on surgery as soon as posable. I was very afraid of surgery at 1st but, after everything I went through (bowel obstructions, gross amounts of prednisone,every type of medication you can name,anemia pain ect and the inability to have a 3rd child due to all the meds) I wouldn't fear surgery. Hang in there and check into Humira or Remicade (it worked but not as well)The most important thing is to find a good MD that will listen to you and take your concernss seriously. Good luck to you.

 
Old 11-24-2009, 07:56 AM   #7
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Sheri91 HB User
Re: Crohns Disease

Thank you all for your advice.
I am now taking azathioprine. n have been for about a month now. side effects havent been great but not too bad either, still unsure about the whole hair loss situation haha, my hair comes out rapidly all the time now, but i still have a full head of hair. lol its probably just be stressing that causes that anyway.
some days i feel fine and others are a nightmare.
my consultant has trold me to stay on the same meds till after xmas now
im less anxious about it all now, but i do have a few problems sleeping and staying awake during the day, even if ive managed a 12 hour sleep. i have tried everything frm old wives tales to herbal remedies.

my life is one big routine of tablets doctors and hospitals. i dont know how people with worse problems havent gone stir crazy.

but again thanks for all your help and advice.

 
Old 11-24-2009, 08:49 AM   #8
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Re: Crohns Disease

I sure am glad that you "let it out" so to speak. That is one thing this is so good for. I know how embarrassing it was, but alot of info just came to you--I wish you all the best and do not hesitate to check the alternative medicines out--just don't put it all off and do find that gastroenterologist.

 
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azathioprine, bowel disease, crohns disease, treating crohns disease



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