So... where to start. I am Sanni and I have Crohn's. :rosette1: (and I love smileys... be warned). I live in Finland and a friend of mine directed me to this forum. What I am hoping from it is to find more support in issues I have since I have a long history with my illness and in a country of a population of only 5 million its hard to find the type of support one with a difficult illness may need.
Im sorry, byt there is no way to do this short....
So like I said I have Crohn's. I was diagnosed in -93 when i was 12 years old. My first operation removing about 20 cm (sorry... using the metric) was in -95. It was to remove some strictures in my small intestine. Since then similar operation has been done to me in 1999, 2001, 2003, 2006 and 2008. With a loss of about 2 meters and more of my small intestines and an experience in 2006 with a septic bowel caused by ruptures of the stiches and ending into a second operation to fix the situation with an ileostoma. Stoma was closed 5 months later in 2007. However in my 2008 operation I was again fixed with an ileostomy and two years later of my own choice my large intestine was removed as a whole in 2010 leaving me with about 1,7 meters (thats about 5'8 inch = same lenght as me) :biggrin: of small intestines ending into a stoma. So I also have a sevire case os SBS (short bowel sydrome).
Meds... lots of them. Starting off with salatsoprin (I may be mis spelling them cus I cant rememeber anymore and cant be bothered to check). But I was alergic to sulfa. Nex was Asacol.. later changed to Pentasa. Azamun was started at some point of time and I probably used it for over 10 years. Cortisone was almost always used since I was never able to drop the dose and be clear of symptons. Either prednisone or entocort was on my pill list for a long time ending up in a situation where my own body stopped producing cortisone of its own in 2008. I think around 1998 I tried a antibiotic coktail used for tubercolosis. I ate the coktail (of I think it was 6 antibiotics) for ½ a year. I am sure my stomach never has been the same after that. My trial with Remicade in perhaps around 2000 but no help was found of it. After failing with Remicade I had Flagyl added with Azamun to my normal meds for several years. Flagyl was initially ended maybe aroun 2005 for causing tingles in my toes (start of nerve damage). Azamun was ended before my operation in 2008 after the operation that gave me my permanent stoma I started up Humira. Been on humira ever since on dose 1 pen every 2 weeks. Now it may be humira, or it may be the loss of the "grow" area of my Crohn's but I have not had a flare up since 2008.
However I do have SBS and between the years of 2008-2010 I was using partial parenteral nutrition with infusions 3 times a week. The two hardest years I had I am sure. After my operation where they removed my large intestine I had an infection in my iv-port that made me hospital bound for 6 weeks. Durring this 6 weeks a new hydration plan was made for me and I have been on it ever since and am in pretty good condition now (all things in consideration). So I drink a electrolyte mix about 2 liters a day and some protein supliment drinks and with that a normal diet of about 3000 cal and I manage pretty good. Friends say they are jeloys I can eat like a truck driver and not gain a pound. :soledance: (I am continuously trying to gain weight)
(Taking my dog for a walk and will be back in a bit later to contionue). :ywow:
Edited text to fix up some spelling.
Im sorry, byt there is no way to do this short....
So like I said I have Crohn's. I was diagnosed in -93 when i was 12 years old. My first operation removing about 20 cm (sorry... using the metric) was in -95. It was to remove some strictures in my small intestine. Since then similar operation has been done to me in 1999, 2001, 2003, 2006 and 2008. With a loss of about 2 meters and more of my small intestines and an experience in 2006 with a septic bowel caused by ruptures of the stiches and ending into a second operation to fix the situation with an ileostoma. Stoma was closed 5 months later in 2007. However in my 2008 operation I was again fixed with an ileostomy and two years later of my own choice my large intestine was removed as a whole in 2010 leaving me with about 1,7 meters (thats about 5'8 inch = same lenght as me) :biggrin: of small intestines ending into a stoma. So I also have a sevire case os SBS (short bowel sydrome).
Meds... lots of them. Starting off with salatsoprin (I may be mis spelling them cus I cant rememeber anymore and cant be bothered to check). But I was alergic to sulfa. Nex was Asacol.. later changed to Pentasa. Azamun was started at some point of time and I probably used it for over 10 years. Cortisone was almost always used since I was never able to drop the dose and be clear of symptons. Either prednisone or entocort was on my pill list for a long time ending up in a situation where my own body stopped producing cortisone of its own in 2008. I think around 1998 I tried a antibiotic coktail used for tubercolosis. I ate the coktail (of I think it was 6 antibiotics) for ½ a year. I am sure my stomach never has been the same after that. My trial with Remicade in perhaps around 2000 but no help was found of it. After failing with Remicade I had Flagyl added with Azamun to my normal meds for several years. Flagyl was initially ended maybe aroun 2005 for causing tingles in my toes (start of nerve damage). Azamun was ended before my operation in 2008 after the operation that gave me my permanent stoma I started up Humira. Been on humira ever since on dose 1 pen every 2 weeks. Now it may be humira, or it may be the loss of the "grow" area of my Crohn's but I have not had a flare up since 2008.
However I do have SBS and between the years of 2008-2010 I was using partial parenteral nutrition with infusions 3 times a week. The two hardest years I had I am sure. After my operation where they removed my large intestine I had an infection in my iv-port that made me hospital bound for 6 weeks. Durring this 6 weeks a new hydration plan was made for me and I have been on it ever since and am in pretty good condition now (all things in consideration). So I drink a electrolyte mix about 2 liters a day and some protein supliment drinks and with that a normal diet of about 3000 cal and I manage pretty good. Friends say they are jeloys I can eat like a truck driver and not gain a pound. :soledance: (I am continuously trying to gain weight)
(Taking my dog for a walk and will be back in a bit later to contionue). :ywow:
Edited text to fix up some spelling.
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