crohns disease from the stomach to the colon

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hi my name is kiri i am 25 years old , i have a son and husband , we are all living in cyprus, i was diagnosed in january 2012 with crohns disease after waiting 3 months for my biopsy results to come back from my colonoscopy, i had a huge flare up in the september of 2011 and was un aware of what i had i was in hospital for 2 1/2 weeks, i kept getting repeatedly miss diagnosed from the age of 15 as i always had a lot of trouble with my bowel since when i was 13 years old, i wish to find someone to talk to as my crohns has never yet been back in remmission, so far medications have always been changed trying to get a soultion and i was just told yesterday that i have only 1 chance left for a medication to work otherwise i have to go for a major op as my crohns has spread very fast from it only being 1 patch on my ileum to covering from my colon right to my stomach with small patches throughout my gut, i have been sent forward also to speak with a pshycologist as i suffer with very deep depression of just staying in the house and crying at the tv, im trying to get a handle on it but i cant do it alone i have found it very difficult to accept this is what the rest of my life will be like and on top of that i also have a thyroid condition being controlled with tablets and also have polycistic overies for both ovaries and have been informed i may never have another child, i know i am not the worst case out there all i need though is someone to talk to who understands what im goign through. Thank you very much KIRI

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  • Posted

    What you need is a drug called Infliximab, it's for people in your very situation, this 'major op' blah blah sounds cheap and scare mongering to be honest neutral
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  • Posted

    yes my gastroenterologist is arranging for me to be put on to infliximab right now i am going for all of the blood tests and x rays and the whole procedure in preperation for the infliximab, she also is wanting to re do a gastroscopy to see the extent of my crohns in my stomach to see how far it has spread, but i asked her because i want to know before i do anything what would happen next if the infliximab did not work as i have gone through the whole list from mesalasine 3x daily at 800mg a time and corticosteriods 16mg a day also azathroprine and taking them altogether for 3 months now but are started to haxe granulocytes present in my blood and a high wbc count also adverse reactions to the drugs i started gaining wait uncontrollable and have pain in my liver, she told me if the infliximab does not show any progress my last choice is to have the op to take all the bad away and prceed with the meds afterwards to keep my crohns in remmission for as long as possible as so fa it has just spread this far in 1 1/2 years since my diagnosis, and have been in pain and having relapse symptoms since that day, the pain and everything combined is getting me down now because i can not let my son sit on my lap and i can not even bend over and play or even pick him up for the pain is to great, im keeping my fingers crossed this drug will work but even if it does not i have prepared my self for the worst because i always prepare for worst case scenario and so far this theory has worked for me as i have not had such a nasty shock when they tell me bad news, and so i will be willing to do the op if all else fails just so i can spend time with my son and enjoy my life will i can before my crohns sends me completely through the loop.
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  • Posted

    Surgery is not ideal and should be a last resort really but expensive biological drugs may not be so freely available abroad. We have the NHS here to foot the bill for drugs - other healthcare economies may not be so lucky. Kiri, what medications have you tried and what are you on at the moment ?

    Tarun (hospital pharmacist)

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  • Posted

    i have tried tramadol for the pain and one type of anti depressents but i cant rmember the name i have had mesalasine now for the duration of my disease since diagnosis i have also tried corticosteroids i started from 32mg a day and slowly decreased and then stayed at 16mg a day along side with the mesalasine, i have also had azathroprine 100mg a day along side with the other 2 medications above i am still on all 3 at the moment and waiting for the rutern of all my test results in a hope they all come back negative and can be started on the infliximab, my doctor has already said she can apply to the ministry of health here to get my put on it by the government and that my treatments will be taken care at the hospital and not be on a home medication as she wants to keep a close check on what results will come of it and have routine blood tests through out, so yes im on mesalasine 3x daily 800mg a time, corticosteroids (prednisolone) 1x daily at 16mg a time, azathroprine 1x daily 100mg a time, i also take 25mg thyroxine daily, metformin for my PCOS at 2x times daily 500mg a time .
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  • Posted

    Oh that's good, Infliximab is like a nuclear weapon against Crohns cheesygrin
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  • Posted

    well thats good to hear, here is hoping it will work when i start on it in a few weeks i just have to hope and keep my fingers crossed that all my test results come back with the all clear so i can get the drug, keep your fingers crossed for me , smile

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  • Posted

    I have to say that surgery gave me back a life 25 years ago. I was only diagnosed 6 months but the Crohn's was aggressive. I have had flair ups since, at the join, but the CD has been fairly good for the last few years and I am on azathioprene to keep it in check. Infliximab was not around then unfortunately.

    If you go to Crohnszone.org, lots of peeps on there who have had this treatment.

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  • Posted

    Hi    everyone is different and I found with the right foods I felt better, I had flare up before my monthly but know ten years later and living with not much stress I'm alot better and I was able to have a child make a diary of foods what you eat and what might upset your crohns and what else might upset you stress is a big thing too

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    • Posted

      hi rose, i am now currently 37 weeks pregnant and i have to say it has not been easy, i started getting stool incontenance, an severe rectal bleeding at 25 weeks, i have grade 4 hemmeroids that make it difficul to walk also got diagosed with a ear murmur, all this with moving country when i was 20weeks along, and m little boy of 41/2yrs is being a devil with my nerves,  have got a long road after my ittle girl is here, i need a ct and mri on my abdomen and foot, a colonoscopy, surgery on my stricture and hemmeroids and on my tumour in my foot at the minute i feel like a lost cause.not sure how to feel sad

       

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