- Joined
- Aug 5, 2011
- Messages
- 25
To some I am Smiley, to others I am Minx, so I put them together to form my name. I answer most readily to Minx 
I have dealt with daily diarrhea for at least the last 16 years (since my daughter was born) and growing up I knew my father had diarrhea constantly, or at least ran to the bathroom within 20 minutes of eating, so I didn't think anything of it. I also found myself being constantly tired.
The day after Thanksgiving 2009, I became very ill and had severe abdominal pain (like a knife going through my stomach). I ran a fever and just could not get out of bed. This lasted for 7 days, but I thought it was the flu or food poisoning (though no one else was sick). I’d already had my appendix taken out, so I knew it wasn’t that. I did not have insurance or make enough money to just go to the doctor, so I didn't. After this was over, when I ate I would experience the same things periodically (diarrhea, nausea, vomiting, fever, aches, abdominal pain, and fatigue). I tried getting an appointment at the health department several times, but they always told me they were not taking new patients.
Finally in September 2010, I heard of a free clinic in the area who’s only requirement was that I either be employed full time and meet income requirements, or be a full-time student. I happened to be both (making $8 an hour as the sole income for my household), so I called and made an appointment. The first appointment was not until November, but I did have one. The initial diagnosis was either IBS or gallbladder (I’m one of only 5 members of my family who still has a gallbladder), and the doc gave me Bentyl and sent me for a HIDA scan and blood work. Everything came back normal, but she still wanted me to have surgery because of the family history. If it made the pain go away I was all for it. There’s a place here that does free surgery, but it covers the whole state so I knew it would be a few months before I could get in without it being an emergency. In the meantime, she told me to stop taking the Bentyl because it wasn’t working and gave me an antibiotic (I don’t remember which one). Within a week I was back to normal. Still had diarrhea, but that was normal for me.
I felt fine until around the end of March 2011, then the pain and nausea started coming back at random times. At the end of May 2011, the pain was constant, I was tired all the time, and I was terrified to eat because I got nauseous. I went back to the free clinic. The doc assured me I was still on the list for surgery, but they were having difficulty finding a doctor. They hoped to have me on the schedule in August. Otherwise there was nothing more she could do, and she wasn’t allowed to prescribe pain meds.
At the beginning of June, I started missing a lot of work. I could hardly stand because of the pain. I also got to the point where it was everything I could do just to put one foot in front of the other or hold my head up. On June 26th, on the advice of one of the employees, I went to the emergency room, thinking maybe they will go ahead and take my gallbladder out. They gave me morphine by IV, took blood and urine for tests, told me I had a UTI, gave me a prescription for antibiotics, lortab, and Phenergan, and released me with instructions to follow up with a surgeon and a clinic.
I called the surgeon’s office and was told I would have to pay a $250 consultation fee and then if it was decided I needed surgery I would have to have ½ of the fee up front. I couldn’t come up with that kind of money. I went to see the doctor at the clinic 2 weeks later. He thought I had pancreatitis after reviewing my previous test results but wanted me to see a gastroenterologist. He gave me more lortab and phenergan and scheduled a follow-up with him on July 26th and sent me to the case manager to contact the GI. The appointment with the GI was scheduled for September 13th, the earliest new patient opening they had.
When I saw him again on July 26th he called a surgeon and described my symptoms. The surgeon suggested I go to the ER and expect to have surgery to remove my gallbladder. I went to the ER and they gave me morphine, and ran an ultrasound and CT scan. The ER doctor is the one who thought it might be Crohn’s Disease and suggested I see a GI. He released me that night with a prescription for 2 antibiotics, and prednisone and told me to call the GI to see if I could get in earlier. I called them the next morning and they moved the appointment to Aug. 2nd.
When I saw the GI, I was on day 6 of 10 of both the prednisone and antibiotics. I felt worse than I ever had. Every symptom I had was 10 times worse. The supervising GI was angry that all the docs to this point just kept giving me antibiotics without knowing for sure what was wrong, and none of them had scheduled me for a colonoscopy. “They’re throwing meds at the unknown” and treating two different things at the same time (an apparent infection and inflammation). She had me taper off the prednisone over the next 4 days, finish the antibiotics, and scheduled a colonoscopy for August 9th, with a follow-up with her on Aug 30th for the results. I burst into tears, realizing that no matter what it was, I wouldn’t find out for almost a month longer. (I know now that the uncontrollable emotional outbursts I’d been having over the course of that week was due to the prednisone)
I had the colonoscopy, but the doctor who did that told my husband he didn’t think I had Crohn’s because my bowels were normal. I looked at the report and saw where he suggested a CT enterography because of a stricture. The GI’s office called Aug. 16th and rescheduled my appointment for the 23rd because the doc would be on vacation on the 30th. A week earlier was obviously fine with me. She told me she didn’t think it was Crohn’s either, but still needed to rule it out because of the stricture and the remaining fever, so she scheduled a CT enterography for the 25th and a follow-up with her on Sept. 6th.
On the 6th, she told me that she could visually confirm Crohn’s and suggested Remicade infusion, but needed baseline tests first. Today (Sept. 9) I got the results of my TB test (negative). I will find out on Tuesday (Sept. 13) when I get the Remicade. In an ironic twist of humor, I got a call from Surgery on Sunday (the free surgeon) to schedule surgery to remove my gallbladder. I told her I would have to talk to my GI and find out if I needed it. (Gotta keep the options open, just in case.)
That’s my story, or at least most of it. If anyone has any questions, please don’t hesitate to ask. I’m an open book and this seems like a great place to be for community and support.
Thank you!
Minx
I have dealt with daily diarrhea for at least the last 16 years (since my daughter was born) and growing up I knew my father had diarrhea constantly, or at least ran to the bathroom within 20 minutes of eating, so I didn't think anything of it. I also found myself being constantly tired.
The day after Thanksgiving 2009, I became very ill and had severe abdominal pain (like a knife going through my stomach). I ran a fever and just could not get out of bed. This lasted for 7 days, but I thought it was the flu or food poisoning (though no one else was sick). I’d already had my appendix taken out, so I knew it wasn’t that. I did not have insurance or make enough money to just go to the doctor, so I didn't. After this was over, when I ate I would experience the same things periodically (diarrhea, nausea, vomiting, fever, aches, abdominal pain, and fatigue). I tried getting an appointment at the health department several times, but they always told me they were not taking new patients.
Finally in September 2010, I heard of a free clinic in the area who’s only requirement was that I either be employed full time and meet income requirements, or be a full-time student. I happened to be both (making $8 an hour as the sole income for my household), so I called and made an appointment. The first appointment was not until November, but I did have one. The initial diagnosis was either IBS or gallbladder (I’m one of only 5 members of my family who still has a gallbladder), and the doc gave me Bentyl and sent me for a HIDA scan and blood work. Everything came back normal, but she still wanted me to have surgery because of the family history. If it made the pain go away I was all for it. There’s a place here that does free surgery, but it covers the whole state so I knew it would be a few months before I could get in without it being an emergency. In the meantime, she told me to stop taking the Bentyl because it wasn’t working and gave me an antibiotic (I don’t remember which one). Within a week I was back to normal. Still had diarrhea, but that was normal for me.
I felt fine until around the end of March 2011, then the pain and nausea started coming back at random times. At the end of May 2011, the pain was constant, I was tired all the time, and I was terrified to eat because I got nauseous. I went back to the free clinic. The doc assured me I was still on the list for surgery, but they were having difficulty finding a doctor. They hoped to have me on the schedule in August. Otherwise there was nothing more she could do, and she wasn’t allowed to prescribe pain meds.
At the beginning of June, I started missing a lot of work. I could hardly stand because of the pain. I also got to the point where it was everything I could do just to put one foot in front of the other or hold my head up. On June 26th, on the advice of one of the employees, I went to the emergency room, thinking maybe they will go ahead and take my gallbladder out. They gave me morphine by IV, took blood and urine for tests, told me I had a UTI, gave me a prescription for antibiotics, lortab, and Phenergan, and released me with instructions to follow up with a surgeon and a clinic.
I called the surgeon’s office and was told I would have to pay a $250 consultation fee and then if it was decided I needed surgery I would have to have ½ of the fee up front. I couldn’t come up with that kind of money. I went to see the doctor at the clinic 2 weeks later. He thought I had pancreatitis after reviewing my previous test results but wanted me to see a gastroenterologist. He gave me more lortab and phenergan and scheduled a follow-up with him on July 26th and sent me to the case manager to contact the GI. The appointment with the GI was scheduled for September 13th, the earliest new patient opening they had.
When I saw him again on July 26th he called a surgeon and described my symptoms. The surgeon suggested I go to the ER and expect to have surgery to remove my gallbladder. I went to the ER and they gave me morphine, and ran an ultrasound and CT scan. The ER doctor is the one who thought it might be Crohn’s Disease and suggested I see a GI. He released me that night with a prescription for 2 antibiotics, and prednisone and told me to call the GI to see if I could get in earlier. I called them the next morning and they moved the appointment to Aug. 2nd.
When I saw the GI, I was on day 6 of 10 of both the prednisone and antibiotics. I felt worse than I ever had. Every symptom I had was 10 times worse. The supervising GI was angry that all the docs to this point just kept giving me antibiotics without knowing for sure what was wrong, and none of them had scheduled me for a colonoscopy. “They’re throwing meds at the unknown” and treating two different things at the same time (an apparent infection and inflammation). She had me taper off the prednisone over the next 4 days, finish the antibiotics, and scheduled a colonoscopy for August 9th, with a follow-up with her on Aug 30th for the results. I burst into tears, realizing that no matter what it was, I wouldn’t find out for almost a month longer. (I know now that the uncontrollable emotional outbursts I’d been having over the course of that week was due to the prednisone)
I had the colonoscopy, but the doctor who did that told my husband he didn’t think I had Crohn’s because my bowels were normal. I looked at the report and saw where he suggested a CT enterography because of a stricture. The GI’s office called Aug. 16th and rescheduled my appointment for the 23rd because the doc would be on vacation on the 30th. A week earlier was obviously fine with me. She told me she didn’t think it was Crohn’s either, but still needed to rule it out because of the stricture and the remaining fever, so she scheduled a CT enterography for the 25th and a follow-up with her on Sept. 6th.
On the 6th, she told me that she could visually confirm Crohn’s and suggested Remicade infusion, but needed baseline tests first. Today (Sept. 9) I got the results of my TB test (negative). I will find out on Tuesday (Sept. 13) when I get the Remicade. In an ironic twist of humor, I got a call from Surgery on Sunday (the free surgeon) to schedule surgery to remove my gallbladder. I told her I would have to talk to my GI and find out if I needed it. (Gotta keep the options open, just in case.)
That’s my story, or at least most of it. If anyone has any questions, please don’t hesitate to ask. I’m an open book and this seems like a great place to be for community and support.
Thank you!
Minx
