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06-30-2013, 05:20 PM   #1
hornby
 
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Join Date: Oct 2011
Location: annan, United Kingdom
My success story

Hey guys, never really told my story. I was 21 living the normaly 21 year olds life, going out, drinking, smoking, late nights, bad diet etc. It started one day at work, I went to the toilet. After having the usual struggle to get the boiler suit of it was just like any other toilet untill I noticed red water. Were talking a lot of red water. Blood results later on would show 1 pint of blood missing. I immediately went into a kind of shock and phoned my dad. He told me to inform my boss and get straight to the docotors, so I did. After a meeting with the doctor who informed me of my one of ulcer in my stomach I was sent packing with a prescription for lanzoprozol! I completed the week course loosing blood a further 3 times and in severe pain! I returned to the doctors all month every 2-3 days complaining of the pain. They finally consulted the head radiologist at the hospital who cc'd a letter to me through the doctor informing me that it would be a waste of time and resources checking what was wrong with me as it was down to my bad life style! At this point my dad got involved with them a futher month passed and I got a date for a camera! I went through the usual, sedated and the camera had its way! An hour after I was taking into the consultation room and told I have termial ileal crohns disease, 6 inch patch on my small intestine and a futher 2 patches in my large intestine! I didnt know anything, was just a blur, didnt even know what crohns was. I got a booklet to explain and a large prescription! So here I nearly 3 years later! 60 mg prednsilone on and of, mercaptopurine, all the usual shit they shove down your throat taken for a year and a half! Slight improvements on and of! Plenty of admissions to hospital! Couldnt work for a year! Then one year ago I just stopped caring, I threw my pills out, went back to work, ate what I want! The gastroenterology department threw a fit! Ive never felt as good! Dont even think I have crohns! I live my normal life now! I beleive you dont need all these gastroreinstatment, immunosuppressive and steroid pills! They do far more harm than good! Anyway this is my success story.
06-30-2013, 05:39 PM   #2
nogutsnoglory
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While I'm glad to hear you are doing well without medication, please know if your initial diagnosis was correct you still do in fact have the disease. This is a chronic lifelong disease with no cure. It sounds like you went into remission though which is fantastic.

While IBD drugs are hard on the body they are also necessary and sometimes wonderful for those of us depending on them to live. We all have different routes but the main thing is we chase the goal of health.

Last edited by nogutsnoglory; 06-30-2013 at 08:34 PM.
06-30-2013, 06:01 PM   #3
hornby
 
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Yes I know its life long but while I'm in this state of health I refer as to not having it yeh dont get me wrong im not advising or telling anyone to quit there meds, thats probably not going to help, there was multiple reasons as to why im ok (so far) without them.
06-30-2013, 06:36 PM   #4
nogutsnoglory
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Well we are really happy you are doing well. Whatever the reason/cause you'll take it right? Hope you have continued success my friend.
06-30-2013, 07:12 PM   #5
Jennifer
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Thank you for sharing your story hornby. I really wish you could have gotten better care in the beginning. Saying that its a waste of time and just giving you Prevacid for that much bleeding is just the worst possible care I've ever heard. After dealing with that I can understand why you have no desire to see a specialist.

Having regular testing done is important though. Since you had to go on and off steroids so often that really means that your disease was never really under control. Sounds like your GI was treating you based off of symptoms alone when really you need to have your inflammation levels tested either by blood work (CRP) and/or through your stool (Fecal Calprotectin). Having that checked on a regular basis will give you a better idea of what's going on and help determine if your medication is doing anything and to determine if you're in fact in remission. Having regular scopes done is also important even if you have no symptoms and are in remission because people with Crohn's are at a greater risk of developing colon cancer. Its also important to know that even though we have few to no symptoms there could be chronic inflammation going on which will create a narrowing and cause a lot of scar tissue which can lead to a blockage (those are life threatening) and then later lead to surgery (resection). We have to try to keep as much bowel as possible as we only have so much to work with not to mention that when the intestinal lining is inflamed and scarred your body wont absorb enough nutrients and that will lead to a whole new set of problems.

While I'm glad that your symptoms have improved I encourage you to have regular testing done at the very least to make sure that you really are doing ok as many members have had few to no symptoms until suddenly they found themselves having emergency surgery for a blockage. If you aren't comfortable with your current GI then I hope that you're able to see someone else. Take care and keep us posted on how you're doing.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-01-2013, 01:33 AM   #6
hornby
 
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Hey Jennifer, thanks alot. I still go for my 6 monthly tests, bloods are always fine! My specialist recommends I take pentasa to remain in remission but when ever I take it I feel horrible. I guess im just lucky.
07-01-2013, 02:04 AM   #7
Jennifer
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Give this a read if you get a chance. Pentasa/Mesalamine really isn't one of the best treatments out there but the link does mention treatments that work better. http://www.crohnsforum.com/showthread.php?t=50253
07-01-2013, 02:58 AM   #8
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If it works do it,good health to you hornby
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07-01-2013, 03:35 AM   #9
hornby
 
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Thanks Jennifer. Thanks I agree, everything normal and I hope it stays that way without treatment.
07-01-2013, 05:46 AM   #10
rollinstone
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glad your doing well bud
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