sorry this is a long story but it has been a long journey with Crohns. I have had it for 24 years of my 38 year life. and for the first time - I'm going to share the whole long excruciating tale.
I have been a member since 2012. I joined after I had surgery that year - probably while on my pain meds because I completely forgot for 3 years that I had an account :ybatty:
Picture it: It's 1991, Robin Hood: Prince of Theives and Thelma and Louise are one the big screen, Mike Tyson is all over the news for rape, The US is headed to Kuwait to lead Operation Desert Storm... and this 13 year old girl probably missed it all because she was in the bathroom.
Ok, that's not helping my long story get any shorter LOL so here it is: Diagnosed in the spring of 1991. I had a year or more of tests and misdiagnoses. I had blisters in my eyes, earlier that year (told it was Herpes) then Uclerative gastritis where nothing but my esophagus and stomach were lined with tiny uclers. I was finally diagnosed with Crohn's disease and told I my cells in my intestines were like having "Pre-cancer"... Good idea to tell that to a young teen. I was convinced I was going to get cancer and die by 35. Thank God I was wrong! I'm 38 now (crap - No i'm not! Not until next month anyway). I've had 3 surgeries & probably most types of complications at one point or another. Been on at least one drug from every class of drug they make to treat Crohn's. I have never had cancer, AND I still even have (some of) my colon!!! Whoo hoo.
I started out on sulfa-drugs in middle school - lol funny story of what happens to a kid who drinks orange juice on an empty stomach to take sulfa drugs before school. Said kid ends up in school office to tell them they need to call a janitor to the back hall bathroom because it looks like someone projectile vomited orange foam everywhere. I didn't think they needed to know it was me - but at least I gave them a heads up before class - I was a thoughtful kid :devil:
I will spare you the drugs lists and all the details of my life in bathrooms across the world - for real: Do not use rest areas in Italy - its amazing how long you can hold it when you see one of those!
I had my first 2 resections at once at age 18. (appendectomy and ileocecectomy with partial colectomy) aka: end of small intestine where my appendix was was removed as well as a section of my sigmoid colon.
After that I was not on many meds, if any at all at times, and fairly long stretches of remissions with intermittent flares. I dealt with perianal disease during that time so I had serious butt pain with fistulas and fissures and hemroids - just my intestines seemed content. :thumleft:
Age 26: I was engaged. My fiance took a contractor position in Middle East with US Goverment... start of stress and flares... went on Remicade. WONDER DRUG!!! :dusty:
That worked for about 8-10 months only though before I needed to add Imuran as well. I had a stricture form and was in immense pain after eating. The thoughts of dying before 35 really started creeping back in, especially when laying on the floor of a hotel bathroom in Germany wondering what the hospitals there were like. (didn't' go, flew home because I was scheduled for surgery the following week and wanted my family there)
Met with a new GI for a second opinion 2 days pre-op and he said I did not need to have surgery when there are drugs I haven't tried. Enter Humira.
It wasn't the night & day wonder drug I hoped but it bought me 4 years!!
but during this time, I got married, and divorced and almost lost my house to foreclose so stress was no stranger. When the stress slows, the flares start.
I had regular visits with a surgeon during this time and finally when adding other drugs to the mix wasn't working, they took me off Humira (weird thing: it was around this time my fistulas and fissures miraculously disappeared...) and scheduled me for surgery. This was April 2012. 17 years between surgeries is pretty darn good since they told me 7-10!!
Surgery went well. I stayed at my parents for a few months since my house had too many stairs. I kinda felt like a kid again. :ghug::ghug::ghug:
But one day I'm out shopping with my parents and I went to the store restroom because I started to cramp. so much discomfort. I ended up waiting for them at the front of the store leaning on a display. My temperature spike and my abdomen started to swell and my inscision started to leak clear fluid. Went to ER - surgery failed, had leaked, and caused an abscess to form. I had a drain tube inserted through my gluteus maximus into the abscess and a drain pouch strapped to my leg, admitted for a few days, put on tons of antibiotic :hallo3: and sent home.
Go back for Radiology CT to get drain removed: admitted instead. Abscess not getting smaller and so I was put on TPN. Good bye food. that sucked. I now hate jello and popsicles as that was all I was allowed for the next 3 months. July 2012 return to radiology to have drain removed - no better, admitted for surgery #2 for resection and drain removal. Success! kind of... though not really feeling great ever. Off TPN, then to thick liquids, soft foods, then resume regular diet.. back home home, back to work by Sept. 2012.
December 2012: colonoscopy follow-up - Everything OK, but then week after never ending watery diarrhea and flu-like symptoms start. Dx: C. Diff infection. Then, Feb 2013 C.diff; April 2013 C.Diff; June 2013 C.Diff , Aug, Nov., Feb. 2014 C.diff:sign0085::sign0085:
Time for new GI. Go through process to find a stool donor. I was so desperate I had embraced idea of a poop transplant! Even started a social media page to inform others of the power of poop! after reading artilcle of same title. yep. really did that. no luck. no donor passed health screen and its expensive (now companies are specializing in providing poop pills and poopsiclesoo:
I somehow, by some miracle, just eventually responded to treatment!
First negative result for C.Diff August 2014. Two freaking years with a C.diff infection (went through 8 various treatments)
I must add that during this time I could not be on any Crohns' meds so the infections didn't get worse since I was already not responding to treatments.
Went in for follow-up with GI to get full lab workup and start on maintenance meds. and have routine colonscopy. Labs were great and I just started Cimzia last month. I am highly disappointed though because my Crohn's is active and I have uclers occuring at the same surgery site where sm & lg bowel meet. crappy.
keeping fingers crossed Cimzia is my next wonder drug! Happy to hear from anyone that has had positive experience with it!! please. needing happy thoughts
:Karl:
So that's me -
Mandalee
I have been a member since 2012. I joined after I had surgery that year - probably while on my pain meds because I completely forgot for 3 years that I had an account :ybatty:
Picture it: It's 1991, Robin Hood: Prince of Theives and Thelma and Louise are one the big screen, Mike Tyson is all over the news for rape, The US is headed to Kuwait to lead Operation Desert Storm... and this 13 year old girl probably missed it all because she was in the bathroom.
Ok, that's not helping my long story get any shorter LOL so here it is: Diagnosed in the spring of 1991. I had a year or more of tests and misdiagnoses. I had blisters in my eyes, earlier that year (told it was Herpes) then Uclerative gastritis where nothing but my esophagus and stomach were lined with tiny uclers. I was finally diagnosed with Crohn's disease and told I my cells in my intestines were like having "Pre-cancer"... Good idea to tell that to a young teen. I was convinced I was going to get cancer and die by 35. Thank God I was wrong! I'm 38 now (crap - No i'm not! Not until next month anyway). I've had 3 surgeries & probably most types of complications at one point or another. Been on at least one drug from every class of drug they make to treat Crohn's. I have never had cancer, AND I still even have (some of) my colon!!! Whoo hoo.
I started out on sulfa-drugs in middle school - lol funny story of what happens to a kid who drinks orange juice on an empty stomach to take sulfa drugs before school. Said kid ends up in school office to tell them they need to call a janitor to the back hall bathroom because it looks like someone projectile vomited orange foam everywhere. I didn't think they needed to know it was me - but at least I gave them a heads up before class - I was a thoughtful kid :devil:
I will spare you the drugs lists and all the details of my life in bathrooms across the world - for real: Do not use rest areas in Italy - its amazing how long you can hold it when you see one of those!
I had my first 2 resections at once at age 18. (appendectomy and ileocecectomy with partial colectomy) aka: end of small intestine where my appendix was was removed as well as a section of my sigmoid colon.
After that I was not on many meds, if any at all at times, and fairly long stretches of remissions with intermittent flares. I dealt with perianal disease during that time so I had serious butt pain with fistulas and fissures and hemroids - just my intestines seemed content. :thumleft:
Age 26: I was engaged. My fiance took a contractor position in Middle East with US Goverment... start of stress and flares... went on Remicade. WONDER DRUG!!! :dusty:
That worked for about 8-10 months only though before I needed to add Imuran as well. I had a stricture form and was in immense pain after eating. The thoughts of dying before 35 really started creeping back in, especially when laying on the floor of a hotel bathroom in Germany wondering what the hospitals there were like. (didn't' go, flew home because I was scheduled for surgery the following week and wanted my family there)
Met with a new GI for a second opinion 2 days pre-op and he said I did not need to have surgery when there are drugs I haven't tried. Enter Humira.
It wasn't the night & day wonder drug I hoped but it bought me 4 years!!
but during this time, I got married, and divorced and almost lost my house to foreclose so stress was no stranger. When the stress slows, the flares start.
I had regular visits with a surgeon during this time and finally when adding other drugs to the mix wasn't working, they took me off Humira (weird thing: it was around this time my fistulas and fissures miraculously disappeared...) and scheduled me for surgery. This was April 2012. 17 years between surgeries is pretty darn good since they told me 7-10!!
Surgery went well. I stayed at my parents for a few months since my house had too many stairs. I kinda felt like a kid again. :ghug::ghug::ghug:
But one day I'm out shopping with my parents and I went to the store restroom because I started to cramp. so much discomfort. I ended up waiting for them at the front of the store leaning on a display. My temperature spike and my abdomen started to swell and my inscision started to leak clear fluid. Went to ER - surgery failed, had leaked, and caused an abscess to form. I had a drain tube inserted through my gluteus maximus into the abscess and a drain pouch strapped to my leg, admitted for a few days, put on tons of antibiotic :hallo3: and sent home.
Go back for Radiology CT to get drain removed: admitted instead. Abscess not getting smaller and so I was put on TPN. Good bye food. that sucked. I now hate jello and popsicles as that was all I was allowed for the next 3 months. July 2012 return to radiology to have drain removed - no better, admitted for surgery #2 for resection and drain removal. Success! kind of... though not really feeling great ever. Off TPN, then to thick liquids, soft foods, then resume regular diet.. back home home, back to work by Sept. 2012.
December 2012: colonoscopy follow-up - Everything OK, but then week after never ending watery diarrhea and flu-like symptoms start. Dx: C. Diff infection. Then, Feb 2013 C.diff; April 2013 C.Diff; June 2013 C.Diff , Aug, Nov., Feb. 2014 C.diff:sign0085::sign0085:
Time for new GI. Go through process to find a stool donor. I was so desperate I had embraced idea of a poop transplant! Even started a social media page to inform others of the power of poop! after reading artilcle of same title. yep. really did that. no luck. no donor passed health screen and its expensive (now companies are specializing in providing poop pills and poopsicles
oo:I somehow, by some miracle, just eventually responded to treatment!
First negative result for C.Diff August 2014. Two freaking years with a C.diff infection (went through 8 various treatments)
I must add that during this time I could not be on any Crohns' meds so the infections didn't get worse since I was already not responding to treatments.
Went in for follow-up with GI to get full lab workup and start on maintenance meds. and have routine colonscopy. Labs were great and I just started Cimzia last month. I am highly disappointed though because my Crohn's is active and I have uclers occuring at the same surgery site where sm & lg bowel meet. crappy.
keeping fingers crossed Cimzia is my next wonder drug! Happy to hear from anyone that has had positive experience with it!! please. needing happy thoughts
:Karl:
So that's me -
Mandalee