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Crohn's Disease Forum » Your Story » Success Stories » Health is not valued till sickness comes


01-06-2013, 06:48 AM   #1
Sydonie
 
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Health is not valued till sickness comes

Hi everyone ,I was diagnosed back in 2008 @ the age of 12 , the first signs where frequent toilet trips pretty much as soon as I had finished eating. Sometimes I would have to stop eating a meal to use the bathroom, my parents noticed this and after dozens of trips to my local GP for constant bloody diarrhea, vomiting,chronic fatigue and often fainting my mum drove me to the hospital where I was seen straight away by a specialist in crohns. He diagnosed me within 10 minutes of meeting me (I get that my GP wasn't a specialist but I mean come on, when is it ever "just a bug" if I'm being put on a drip everyday and passing out from lack of nutrition") the specialist was really concerned and let my parents know that it's very possible I could have / might die , my organs where shutting down and basically choosing not to absorb any nutrition at all. I had lost weight rapidly 30 KGS in just under 2months, I was diagnosed also with anorexia and anemia. The first medication I remember taking was prednisone (we all hate it/love it) it didn't do the trick. I was then put on a liquid diet (I had a naso gastric tube and was fed by a machine for 22hours a day) I was not aloud to ingest anything but clear liquids for 7months , the naso gastric tube really knocked my confidence and got me down a lot of the time, crohns is easy to hide physically but not when I had that thing, I was rearing to get back to school and my class was amazingly accepting of my illness and how different I looked. I don't recall anyone from my class saying anything cruel to me so I was safe while in lesson but around the school I felt exposed and everyone kept asking am I going to die and if I have cancer (at this point a lot of my hair had fallen out and I wore a bandanna), I would go into the office at lunch time so I could avoid the other kids.

After the 7 months was up and my last naso gastric tube was removed I started feeling a lot better, I was introduced to food at a very steady pace going from liquids to solids gradually. It felt amazing that I could eat again (my jaw ached all the time !!!hahah) just going out with mum and being able to get something to eat for lunch (even if it was baby-like food) was a feeling I can't describe! Some months down the line I flared and was on prednisone, pentasa, Humira and some others which I have long forgot (azathioprine or similar) they worked again for a few months but I flared again and was put on a whole concoction of drugs which were beginning to take over. I remember being on methotrexate injections and feeling sick and light headed everytime I even spoke about them because when I did the injections I often threw up from the side effects. I decided enough was enough! At the age of 16 not being able to get out and do what I wanted, living with this disease that none of my friends even know what it is ,that no one really understood, I stopped all my medications (except pentasa) and I now take double the amount of tablets with no nasty side effects because I take all natural tablets now. I feel 1000000 times better than I ever have , my hair is stronger my skin is improving my over all appearance is HEALTHY a word I have never used to describe myself in a long, long time! I am sorry this became so long but crohns will be with me forever and I can't make it into a shorter version because it has been a huge part of me and my life! .CROHNS DOESN'T CONTROL ME ANYMORE .

Last edited by Angrybird; 01-06-2013 at 09:01 AM.
01-06-2013, 08:54 AM   #2
Angrybird
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Hello and welcome to the forum

Just to confirm did you keep your GI doc informed when you started stopping the meds? Are they still seeing you on a routine basis to keep an eye on disease activity? What natural tablets are you taking and is the tum now completely settled? Are you following a specific diet food wise?

AB
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
01-06-2013, 02:30 PM   #3
wildbill_52280
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what do you mean you stopped all medications and just take natural tablets now?
01-06-2013, 04:00 PM   #4
Sydonie
 
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Hi angry bird I informed my specialist as soon as I stopped taking meds, I live on a very strict diet of gluten free, dairy free and I'm vegetarian which I find really helps! I haven't seen specialist in two years I go for regular blood tests which get sent to him so that he can see it anything is happening.the tablets I take are :slippery elm capsules,calcium,vegetable capsules,iron,fish liver oils,magnesium,vitamin c, spiralina,folic acid,and pentasa I also take aloe Vera tablets and aloe Vera drink and chi mineral water I find these both help a lot .
01-06-2013, 04:35 PM   #5
Angrybird
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I am pleased that your doc has been in the loop with this although would feel a little better if you actually saw him on some kind of routine basis as bloods can only go so far in saying what is happening in the body. I take it you experience no symptoms at all with your tum?
01-06-2013, 04:59 PM   #6
Ihurt
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Hey there.

I am happy that you have found a good plan and are feeling better. I have a friend who see's a naprapath doctor( he is holistic)and she said she met a lady who also had crohns in his office. She was sooooo sick when she first started seeing him and was told by her GI surgeon that she needed her colon removed. Well she started working with this naprapath and went on a special diet( juicing organic vegetables) etc.. and a year later she is healthier than she ever has been. Her intestines are great now, she has had no isseues. I mean so I do believe that diet makes a huge difference. I mean going by how you feel is a good indicator of how you are doing I would guess.










Hi angry bird I informed my specialist as soon as I stopped taking meds, I live on a very strict diet of gluten free, dairy free and I'm vegetarian which I find really helps! I haven't seen specialist in two years I go for regular blood tests which get sent to him so that he can see it anything is happening.the tablets I take are :slippery elm capsules,calcium,vegetable capsules,iron,fish liver oils,magnesium,vitamin c, spiralina,folic acid,and pentasa I also take aloe Vera tablets and aloe Vera drink and chi mineral water I find these both help a lot .
01-06-2013, 05:00 PM   #7
Sydonie
 
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I honestly dislike seeing him as I find with specialist they focus on the disease instead the hole person so I'm happy with sending off bloods and il know if I feel any different and will contact him for the next plan of action , I don't no the only time I get any symptoms is if I'm naughty and eat something I shouldn't which is normally by accident thanks for your concern angry bird we are all in this together
01-06-2013, 05:04 PM   #8
Sydonie
 
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Hey there.

I am happy that you have found a good plan and are feeling better. I have a friend who see's a naprapath doctor( he is holistic)and she said she met a lady who also had crohns in his office. She was sooooo sick when she first started seeing him and was told by her GI surgeon that she needed her colon removed. Well she started working with this naprapath and went on a special diet( juicing organic vegetables) etc.. and a year later she is healthier than she ever has been. Her intestines are great now, she has had no isseues. I mean so I do believe that diet makes a huge difference. I mean going by how you feel is a good indicator of how you are doing I would guess.



Yes I believe in a more natural approach , I went to see a naturopath last year who suggested all the tablets thy I now take I can't thank her enough I just couldn't carry on taking injection after pill and taking more pills and injections to stop the side effects of other pills and injections I just couldn't see and end to the madness !!!!! I'm so glad your friend is feeling better , thanks for your comment also it's so nice to know that other people are going through and have gone through what I have !!
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