Hello everyone, first time poster here long time Crohn's patient.
Anyhow I lost my job in the beginning of 2012 and therefore my medical insurance. I thought no big deal, seeing as i have extensive experience in my field and thought I could get a new job quickly and resume my medical care and prescriptions. Wrong! The economy is rough out here.
Much of 2012 was without my meds, which was Asacol at the time. Around September I started getting new symptoms that many others have had, just not me until now. PAIN! holy cow it felt like I was being repeatedly stabbed in my belly. I started taking whatever medication I could scrounge up for pain like norco or percocet, because the pain I was experiencing was that bad. I was able to secure a job but sadly had to quit as with the pain and cramping, I simply couldn't make it to work. Also, when the pain started so came along the nausea, vomiting, and weight loss. Since September 2012, I have lost about 57 pounds, I am now down to a paltry 150 for my height of 6'.
Thankfully my lovely fiance has added me to her medical plan in January and i was able to resume my asacol and get pain support. In February i decided i needed a new Gastro doctor as i felt that my original doctor wasn't a good fit, so i got an appointment and went to see my new doc. He ordered an abdominal CT scan, the results came back a week later: significant inflammation was reported as noticed between a 2007 ct scan and the current one. I went in for another CT scan for my pelvic region on the 1st of this month. Now here is where things get interesting.
After the abdominal CT my doctor put me on a steroid that was new to me, Uceris, which is amazing and at this point has reduced my pain from a constant agony to a mild annoyance that sometimes did spike but is totally livable. So after I get the pelvic CT on the 1st, my fiance and I go up to South Lake Tahoe over the weekend to visit family and scout out possible wedding locations, and since I was on the Uceris I was having minimal pain and was happy as a clam, so to speak.
We came back Monday and I waited till Wednesday to hear from my doctor, which I had not, at which point I call in to get the results of the CT or make a follow up appointment. The nurse/receptionist tells me the CT didn't show anything new, which is naturally something I'm happy about. However, I get a call directly from my doctor 30 minutes later telling me it looks as though I have two perforations in my colon and that I need to go to the ER right away, and that I will likely need a partial resection or full resection of my bowels. I'm 27 y/o btw. Naturally I'm in a state of shock. So I do something, that now I realize was of course a bad call considering the implications of peritonitis, I tell the doctor that I want one more night at home seeing as at that point I was looking at a lengthy hospital stay. He fights back but it is in vain because I can be VERY stubborn. So I get my night at home which is filled with a family conference with my loved ones, with many tears involved, followed by a nice dinner with my fiance and a quiet evening of planning for this new possibly catastrophic (imo for me at least) experience.
The next day I check myself into the ER and am admitted right away with less then a 10 minute wait, as my doctor has notified everyone and I find myself in a bed wearing a gown with IV fluids and heavy duty antibiotics. I meet with many doctors overseeing my case, and a surgeon who is very nice and apparently from everyone I spoke to in the hospital is the best in his field for gastro type procedures. He tells me many things I cant remember in my state of shock, but it boils down to resection or partial if I'm lucky as they wont know until my new CT scans come in. I cant exactly describe my emotions at this point other then shock,trepidation, and a certain stoic acceptance of what is to come and how drastically my life is going to change at this point.
My surgeon returns a few hours later bearing some of the BEST news i have ever received in my life (other then the love of my life saying yes of course). It was all a mistake, the previous CT scan had been interpreted wrong because of the way my intestines were sitting inside me, thus resulting in shadowing. I almost cried I was so happy. Turns out that I do have Terminal Ileitis in addition to my now pretty bad Crohn's and I will of course, as I already knew, need surgery eventually but it wasn't on the table as of this time. I'm ecstatic as I am discharged and I make it home before my girlfriend gets off work to head over and visit me at the hospital, so I surprise her with the good news. As of right now I'm on Cipro, Metronidazol, Uceris, Norco for pain and I'm waiting for my Humira script to be filled for the first time (not happy about injecting myself, but anything that gets me remission hopefully is worth it). And most importantly I am at home with my fiance and my pets and happy to be so.
For those of you who read this thank you for taking the time, and I apologize for my bad punctuation, grammar and everything else but writing this has been a bit of a catharsis and has made me feel that much better. I wanted to relate my story as i am sure many of you have been though much the same.
Anyhow I lost my job in the beginning of 2012 and therefore my medical insurance. I thought no big deal, seeing as i have extensive experience in my field and thought I could get a new job quickly and resume my medical care and prescriptions. Wrong! The economy is rough out here.
Much of 2012 was without my meds, which was Asacol at the time. Around September I started getting new symptoms that many others have had, just not me until now. PAIN! holy cow it felt like I was being repeatedly stabbed in my belly. I started taking whatever medication I could scrounge up for pain like norco or percocet, because the pain I was experiencing was that bad. I was able to secure a job but sadly had to quit as with the pain and cramping, I simply couldn't make it to work. Also, when the pain started so came along the nausea, vomiting, and weight loss. Since September 2012, I have lost about 57 pounds, I am now down to a paltry 150 for my height of 6'.
Thankfully my lovely fiance has added me to her medical plan in January and i was able to resume my asacol and get pain support. In February i decided i needed a new Gastro doctor as i felt that my original doctor wasn't a good fit, so i got an appointment and went to see my new doc. He ordered an abdominal CT scan, the results came back a week later: significant inflammation was reported as noticed between a 2007 ct scan and the current one. I went in for another CT scan for my pelvic region on the 1st of this month. Now here is where things get interesting.
After the abdominal CT my doctor put me on a steroid that was new to me, Uceris, which is amazing and at this point has reduced my pain from a constant agony to a mild annoyance that sometimes did spike but is totally livable. So after I get the pelvic CT on the 1st, my fiance and I go up to South Lake Tahoe over the weekend to visit family and scout out possible wedding locations, and since I was on the Uceris I was having minimal pain and was happy as a clam, so to speak.
We came back Monday and I waited till Wednesday to hear from my doctor, which I had not, at which point I call in to get the results of the CT or make a follow up appointment. The nurse/receptionist tells me the CT didn't show anything new, which is naturally something I'm happy about. However, I get a call directly from my doctor 30 minutes later telling me it looks as though I have two perforations in my colon and that I need to go to the ER right away, and that I will likely need a partial resection or full resection of my bowels. I'm 27 y/o btw. Naturally I'm in a state of shock. So I do something, that now I realize was of course a bad call considering the implications of peritonitis, I tell the doctor that I want one more night at home seeing as at that point I was looking at a lengthy hospital stay. He fights back but it is in vain because I can be VERY stubborn. So I get my night at home which is filled with a family conference with my loved ones, with many tears involved, followed by a nice dinner with my fiance and a quiet evening of planning for this new possibly catastrophic (imo for me at least) experience.
The next day I check myself into the ER and am admitted right away with less then a 10 minute wait, as my doctor has notified everyone and I find myself in a bed wearing a gown with IV fluids and heavy duty antibiotics. I meet with many doctors overseeing my case, and a surgeon who is very nice and apparently from everyone I spoke to in the hospital is the best in his field for gastro type procedures. He tells me many things I cant remember in my state of shock, but it boils down to resection or partial if I'm lucky as they wont know until my new CT scans come in. I cant exactly describe my emotions at this point other then shock,trepidation, and a certain stoic acceptance of what is to come and how drastically my life is going to change at this point.
My surgeon returns a few hours later bearing some of the BEST news i have ever received in my life (other then the love of my life saying yes of course). It was all a mistake, the previous CT scan had been interpreted wrong because of the way my intestines were sitting inside me, thus resulting in shadowing. I almost cried I was so happy. Turns out that I do have Terminal Ileitis in addition to my now pretty bad Crohn's and I will of course, as I already knew, need surgery eventually but it wasn't on the table as of this time. I'm ecstatic as I am discharged and I make it home before my girlfriend gets off work to head over and visit me at the hospital, so I surprise her with the good news. As of right now I'm on Cipro, Metronidazol, Uceris, Norco for pain and I'm waiting for my Humira script to be filled for the first time (not happy about injecting myself, but anything that gets me remission hopefully is worth it). And most importantly I am at home with my fiance and my pets and happy to be so.
For those of you who read this thank you for taking the time, and I apologize for my bad punctuation, grammar and everything else but writing this has been a bit of a catharsis and has made me feel that much better. I wanted to relate my story as i am sure many of you have been though much the same.
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