- Location
- Louisville,
Ok here goes.
About me:
I was born in June of 1981, can remember symptoms as far back as 1987, and was (finally) diagnosed in January of 1990. I've kept my illness, or at least the details thereof, to myself for most of my life as Crohn's used to be nigh unheard-of in people under 30 until recently (relatively speaking). I've not really reached out to the Crohn's community, so posting on this forum is a new experience for me.
Growing up with Crohn's has been a blessing and a curse. I was always smaller than my classmates due to mal-absorbtion and was bullied quite a bit. But, that made me the compassionate person I am today, so fair trade. The worst of it, as I'm now realizing, were the meds I was on during my adolescence. I wasn't lucky enough when I was younger to have my diseased tissue concentrated to one location; I had sores from entrance to exit and pretty much everywhere in between. The medications for Crohn's were still new at that time and the long-term effects weren't exactly pleasant. I realize that more and more each day.
I was on Imuran and Prednisone along with the usual regiment of sulfates (mesalamine and the like) from the age of 9 until the age of 14, at which time I lost medical insurance. I went untreated (aside from way too much ibuprofen (E.R. docs, amirite?) and symptoms persisted and worsened during my teens years until I had an emergency resection done in February of 2001. *TYSM Dr. Susan Galandiuk!* I even got approved for Medicare, so I could see the doctor regularly, but my hatred for medications was too strong by this time for it to matter.
I was symptom-free until around June of 2005, when Crohn's came back but was concentrated around the previous surgery, so cutting it out went fairly routinely. 3 Cheers for 3 more years!
My inner monologue in 2008:
Cramping? Already? It's only been 3 years. Maybe it's just - nope. That's Crohn's alright. Ok. I get it - go to the doctor and get some treatment medications. Fine. What this time? Humira? Ok google, lay it on me. You have got to be kidding me! If you really think it's the best coarse, then fine.
I took my injections regularly and after about 4 months got my disease under control despite the constant sinus infections. It was in 2009 when I first broke my collar bone. I broke it again a year later. Both times I had to stop my injections while I recovered. I didn't start them up the second time. I wasn't exactly in remission, but flare-ups were few enough and far enough between to be manageable through diet, etc. Not my first rodeo. I broke my collar bone a third time in September of 2013.
In June of 2014 my symptoms got bad enough for me to go back to the g.i. I told him about the past couple years and he ordered a bone density scan I got the results back earlier this week. I now have Osteoperosis. At 33. I can't help but think that long-term exposure to chemo during puberty had something to do with getting old in my 20's. Now I'm looking at something else to take medications for and wondering how they're going to come back to haunt me in my 40's.
A list of diagnoses thus far:
Bronchial Asthma - 1981 (birth)
Crohn's Disease - 1990
Inflammatory Arthritis - brought on by Imuran
Clinical Depression - 1994
Eroded Esophagus - 1998 brought on by Ibuprofen
Short Bowel Syndrome - 2001
Bipolar Disorder - 2005
Osteopenia - 2008
Osteoperosis - 2014
I know I sound bitter, but I do count my blessings. A) I've not yet needed a colostomy. B) I see the best G.I. groups in NA (Susan Galandiuk, Jeffrey Tuvlin) C) I'm sure there's more, so we'll call this blessing C through K
I honestly am very worried about the next leg in my journey. I'm due to take Entocort and apparently there's only one approved treatment for restoring bone density, so that med scares me.
Idk what I want from this, support? Someone to give advise to regarding chemical-free pain management? (meditation - srsly it's powerful stuff) Maybe just a means to vent and process my concerns. Still, i look forward to seeing what this site has to offer.
About me:
I was born in June of 1981, can remember symptoms as far back as 1987, and was (finally) diagnosed in January of 1990. I've kept my illness, or at least the details thereof, to myself for most of my life as Crohn's used to be nigh unheard-of in people under 30 until recently (relatively speaking). I've not really reached out to the Crohn's community, so posting on this forum is a new experience for me.
Growing up with Crohn's has been a blessing and a curse. I was always smaller than my classmates due to mal-absorbtion and was bullied quite a bit. But, that made me the compassionate person I am today, so fair trade. The worst of it, as I'm now realizing, were the meds I was on during my adolescence. I wasn't lucky enough when I was younger to have my diseased tissue concentrated to one location; I had sores from entrance to exit and pretty much everywhere in between. The medications for Crohn's were still new at that time and the long-term effects weren't exactly pleasant. I realize that more and more each day.
I was on Imuran and Prednisone along with the usual regiment of sulfates (mesalamine and the like) from the age of 9 until the age of 14, at which time I lost medical insurance. I went untreated (aside from way too much ibuprofen (E.R. docs, amirite?) and symptoms persisted and worsened during my teens years until I had an emergency resection done in February of 2001. *TYSM Dr. Susan Galandiuk!* I even got approved for Medicare, so I could see the doctor regularly, but my hatred for medications was too strong by this time for it to matter.
I was symptom-free until around June of 2005, when Crohn's came back but was concentrated around the previous surgery, so cutting it out went fairly routinely. 3 Cheers for 3 more years!
My inner monologue in 2008:
Cramping? Already? It's only been 3 years. Maybe it's just - nope. That's Crohn's alright. Ok. I get it - go to the doctor and get some treatment medications. Fine. What this time? Humira? Ok google, lay it on me. You have got to be kidding me! If you really think it's the best coarse, then fine.
I took my injections regularly and after about 4 months got my disease under control despite the constant sinus infections. It was in 2009 when I first broke my collar bone. I broke it again a year later. Both times I had to stop my injections while I recovered. I didn't start them up the second time. I wasn't exactly in remission, but flare-ups were few enough and far enough between to be manageable through diet, etc. Not my first rodeo. I broke my collar bone a third time in September of 2013.
In June of 2014 my symptoms got bad enough for me to go back to the g.i. I told him about the past couple years and he ordered a bone density scan I got the results back earlier this week. I now have Osteoperosis. At 33. I can't help but think that long-term exposure to chemo during puberty had something to do with getting old in my 20's. Now I'm looking at something else to take medications for and wondering how they're going to come back to haunt me in my 40's.
A list of diagnoses thus far:
Bronchial Asthma - 1981 (birth)
Crohn's Disease - 1990
Inflammatory Arthritis - brought on by Imuran
Clinical Depression - 1994
Eroded Esophagus - 1998 brought on by Ibuprofen
Short Bowel Syndrome - 2001
Bipolar Disorder - 2005
Osteopenia - 2008
Osteoperosis - 2014
I know I sound bitter, but I do count my blessings. A) I've not yet needed a colostomy. B) I see the best G.I. groups in NA (Susan Galandiuk, Jeffrey Tuvlin) C) I'm sure there's more, so we'll call this blessing C through K
I honestly am very worried about the next leg in my journey. I'm due to take Entocort and apparently there's only one approved treatment for restoring bone density, so that med scares me.
Idk what I want from this, support? Someone to give advise to regarding chemical-free pain management? (meditation - srsly it's powerful stuff) Maybe just a means to vent and process my concerns. Still, i look forward to seeing what this site has to offer.
