- Joined
- Mar 19, 2012
- Messages
- 10
Sidenote: this is really long, I tried to keep it as short as possible but even then it ended up being about 2,500 words typed. I'm sorry. 
I’ve been waffling with posting here for awhile now, but after seeing the amazing outpour of support that you guys all give one another I felt like maybe I should say something now, instead of later.
I really don’t know where to start with all this. I’ve had tummy troubles for as long as I can remember, but most of it was attributed to an anxiety disorder. The older I got the worse it got, but I could always seem to keep it under control. Then about 8 years ago it just got out of control. I couldn’t keep anything down, my stomach HURT it felt like someone was trying to rip my insides out with a knife. I would go months with these episodes and then they would subside and I could go back to living life as normal and forget all about them.
So then about 5 years ago I ended up in the hospital, because I was once again unable to keep anything down, couldn’t deal with the pain and was having these mini blackouts and such. They told me they were going to take my gallbladder out, so imagine my surprise when the next day I was told I could go home. At that time I was only 20 years old and really didn’t know what I was doing, I didn’t say anything and it’s something that I regret not doing every day. I should have questioned WHY they were releasing me, instead of seeing it as a “HECK YES I CAN GO HOME” type of thing.
2 years and MANY ER & doc visits later – I still had my gallbladder, still had the episodes of pain, vomiting, and diarrhea, and now I have a new doctor. I go in to see her, and the first thing she tells me is that I need to drop some weight. Now I don’t know how many people have ever had to deal with a doctor whose primary concern was that they were overweight, but let me tell you for this doctor it was the root of all my problems. Jessica has the flu, oh it’s because she’s overweight. Jessica is blacking out, oh she needs to lose weight. Jessica has a sever ear infection, must be all that fat in her body. Seriously, it seemed like EVERYTIME I went to see the doctor she would tell me to lose weight. Now at this point most people would have gotten another doctor, or something. However the wonders of being uninsured and having to pay out of pocket means that I got to keep her for quite a while.
Finally one day I was at work and I started having this pain in my chest and stomach. It got so bad that I fell to the floor and clutched my chest thinking I was having a heart attack, I ended up back in the ER and was told I was just having some heart murmur issues and that I would be fine. Imagine my surprise when the next night I was woke up at 4am SCREAMING my fool head off, it hurt so bad I thought I was going to die. Rushed back to the ER and turns out my gallbladder was inflamed and had to be removed. Finally I thought I would get some relief. All was going to be well.
Nope, that was a fools dream. Still every 5-6 months I was having the same pains, the diarrhea, the vomiting and the blacking out. I kept ending up in the ER, because I now had no primary care doctor and that was the only thing I could think to do. There isn’t much in the way of health care around here when you can’t afford the 50$-75$ co-pays or whatever + the cost of whatever medication the prescribe you.
Alright, so now we’re about to last summer timeline wise. I was admitted into the hospital because I was in so much pain that WHILE DRIVING I blacked out and puked all over myself. I don’t remember calling my best friends dad, I don’t remember talking to him as I drove myself to the hospital, all I remember is the pain. I was admitted and they ran some tests, thinking that it was possibly a burst ovarian cyst or something. Nothing was found, and I was told that I had just probably pulled a muscle in my groin, how groin pain = stomach ache and everything I’m not sure but okay. They’re the medical professionals I’ll take their advice.
Then again, taken back to the ER because I blacked out at a friends house during a bonfire. Same thing, probably just an ovarian cyst or a kidney infection. Drink more fluids, you’ll be fine. 4 more visits to the ER and to the local health clinic. Nothing was wrong, they just kept waving me away. Well by now at the 2 ERs in our town I am labeled a drug seeker.
Which brings us into this year, and where there is finally some light at the end of the tunnel. End of January, I’m back to the same old thing. Puking, pooping and blacking out. There were days where I was so tired I couldn’t even get myself out of bed to go to work or school, anytime I would stand up or sit down I would get so dizzy. I just felt like crap, but I kept pushing it off. No doctor, no money and no point in going to the ER or anything. I blacked out again while driving, I don’t remember HOW I got into the Walgreens parking lot, I don’t even remember leaving the school. My stomach hurt, I couldn’t keep anything down and I was just miserable. But I still kept pushing on.
And then I collapsed at work. Straight up fell down in front of everyone. I came too holding my stomach crying about how badly it hurt, and in a wheelchair. I was sent to the ER yet again, and I was terrified.
This time I was lucky and my grandma was with me, when we met with the ER doctor I told him EVERYTHING that I’ve just told all of you. I cried on him and seriously just let it out. I was embarrassed and in pain and I just wanted it to feel better NOW. Within 20 minutes of me being there, he had me ordered for a catscan with contrast, something for the pain and something to help me with the fact that every time I moved I felt like the world was going to end and I was going to puke. (Dear lord I love zolfran)
I was once again hospitalized, because from throat to anus I was completely inflamed, severely dehydrated and for pain management. While in the hospital I had to go through all the embarrassing things that I know many of you have gone through. Every time I had a bowl movement I had to page for the nurse, they had to come look at it and see how much was there. Multiple times per hour, they would come and check it. I felt horrible and so embarrassed. They ended up taking a stool sample, and more blood than a vampire, and scheduled me for a colonoscopy and an endoscopy. The sad thing is that with the colonoscopy prep, I didn’t even need to drink ½ of the bottle. I was already pretty much cleaned out from being sick. The nurse said that she had never seen someone run clear so quickly before.
The day before the procedure I got to meet one of the doctors from the group that would be doing it. I told him straight up that I don’t have insurance, and don’t know how I’m going to pay for any of this. He told me that based on my symptoms he thinks it might be either Chron’s or a Colitis, and that I would need a doctor like him and we would cross the bridge of payment when we got to it. He then talked to me like a human being, which at this time made all the difference in the world to me. He asked me about Jessica, not about the sickness, and he told me about himself and his partners. Just that little bit of kindness really REALLY helped me not be so afraid.
The procedure wasn’t so bad, I just cried a lot during it because having the tube in my throat gave me a panic attack, but one of the nurses stayed with me and kept rubbing my face like my mom used to when I was little and it really helped.
A day later and I was released. I still was having poop issues and everything but I could now move around a little bit better and the pain was pretty manageable so they said that with nothing else to hold me on.
Two days after being released from the hospital I got a phone call from the health clinic, and they told me that I had tested positive for salmonella, and that I needed to keep taking the antibiotic that the hospital had prescribed to me. They asked me about where I’ve eaten and all that and then hung up. WHAT!?! I had never been prescribed an antibiotic, and hadn’t eaten out or anything so I wasn’t sure WHERE I could have picked it up at. Went back to the health clinic and talked to the head doctor there, she sent me back to the ER because it hadn’t been reported to them and since it wasn’t reported properly I needed to get it looked at. Because of the improper report, I had to tell work and school and call and inform my best friend who had just had a baby, because according to the file I had something worse than just food poisoning, I was highly contagious. That was seriously more embarrassing than anything I think I’ve gone through yet, to have to call my boss, my school counselor and my best friend and tell them that I could have put people at risk.
Once back to the ER with the note from the head doc in my hand I was treated like complete crap. At the end of that visit all I took away from it was that it was my fault that I was sick, and I didn’t do what I was supposed to do. Got a script for an antibiotic and away I go.
So now I get the call from the GI doctor’s office, and I need to come in. Great, okay. So I go in and tell them about everything that had happened and they tell me that well they know I’ve got some form of IBD but they’re not sure which one. They tell me that the salmonella was probably a false positive but to finish the antibiotic anyway. They want me to start on a prednisone taper and asacol. Fine, I remind them that I do not have insurance and that I will be paying for all medication out of pocket. The medication was hella expensive, 780.00 for the Asacol alone. I wasn’t able to get that filled but was able to get the prednisone. They also weighed me, and from the time I had been hospitalized until about 3 weeks later I had dropped nearly 50 lbs.
Once on the medication I kept having issues. I didn’t think it would go away immediately but I also didn’t expect to start passing whole pills and everything either. So I called the doctor, was told to go straight to the ER. Once there I get treated like crap again. They didn’t take me seriously, the ER doctor kept calling it a “stomach bug” when I politely corrected him and told him I was told that I had an IBD he shrugged it off and told me to eat more. I was never so boggled in my life. Eat more? How much more could I eat? Nothing I ate would stay down, not even plain water. I cried the whole way home that night. Called the doctors office in the morning and was put on another antibiotic and a probiotic.
So the stomach ache is still here, and I’m still best friends with my toilet. There are days where I want to sleep in the bathroom so I don’t ever have to go far. It’s embarrassing and I think I’ve cried more the last few weeks than I did the entire time after my mom passed away.
I go back to the GI doctor tomorrow for a follow up and I don’t have anything good to say. I’m still not feeling well. I’m at my ropes end with all of this. I look like a blimp, even though I’m losing weight my stomach swells so badly that I can’t even fit into my clothing, and the clothing that I do fit into at the beginning of the day by the end of the day is either too tight of is falling off of me.
I’ve gone back to work on short shifts, but have had to call off more than once, and I don’t qualify for the FLMA because I haven’t worked the appropriate amount of hours yet this year, even if you combine them with last years. And school is a whole other ordeal, I’m just really thankful that my professors are understanding.
I’m back to completely relying on my grandma to pay for my bills and stuff. My last paycheck was 38.00, just enough to get my medication filled and some of the juice that I can keep down. I’m feeling lost and just like a crummy human being.
Thank you so much for letting me pour my heart and soul out here, I’m sorry this is so long. But I just had a lot to get off my chest and I don’t really have anyone else I can talk to about it. Nobody else in my life really seems to understand.
Anyway hi.anda-wave-t: I’m Jess, 25 years old and currently running the undiagnosed circuit, but hoping for something tomorrow. Not really holding my breath though, because I’m sure that I’ll just be disappointed.
I’ve been waffling with posting here for awhile now, but after seeing the amazing outpour of support that you guys all give one another I felt like maybe I should say something now, instead of later.
I really don’t know where to start with all this. I’ve had tummy troubles for as long as I can remember, but most of it was attributed to an anxiety disorder. The older I got the worse it got, but I could always seem to keep it under control. Then about 8 years ago it just got out of control. I couldn’t keep anything down, my stomach HURT it felt like someone was trying to rip my insides out with a knife. I would go months with these episodes and then they would subside and I could go back to living life as normal and forget all about them.
So then about 5 years ago I ended up in the hospital, because I was once again unable to keep anything down, couldn’t deal with the pain and was having these mini blackouts and such. They told me they were going to take my gallbladder out, so imagine my surprise when the next day I was told I could go home. At that time I was only 20 years old and really didn’t know what I was doing, I didn’t say anything and it’s something that I regret not doing every day. I should have questioned WHY they were releasing me, instead of seeing it as a “HECK YES I CAN GO HOME” type of thing.
2 years and MANY ER & doc visits later – I still had my gallbladder, still had the episodes of pain, vomiting, and diarrhea, and now I have a new doctor. I go in to see her, and the first thing she tells me is that I need to drop some weight. Now I don’t know how many people have ever had to deal with a doctor whose primary concern was that they were overweight, but let me tell you for this doctor it was the root of all my problems. Jessica has the flu, oh it’s because she’s overweight. Jessica is blacking out, oh she needs to lose weight. Jessica has a sever ear infection, must be all that fat in her body. Seriously, it seemed like EVERYTIME I went to see the doctor she would tell me to lose weight. Now at this point most people would have gotten another doctor, or something. However the wonders of being uninsured and having to pay out of pocket means that I got to keep her for quite a while.
Finally one day I was at work and I started having this pain in my chest and stomach. It got so bad that I fell to the floor and clutched my chest thinking I was having a heart attack, I ended up back in the ER and was told I was just having some heart murmur issues and that I would be fine. Imagine my surprise when the next night I was woke up at 4am SCREAMING my fool head off, it hurt so bad I thought I was going to die. Rushed back to the ER and turns out my gallbladder was inflamed and had to be removed. Finally I thought I would get some relief. All was going to be well.
Nope, that was a fools dream. Still every 5-6 months I was having the same pains, the diarrhea, the vomiting and the blacking out. I kept ending up in the ER, because I now had no primary care doctor and that was the only thing I could think to do. There isn’t much in the way of health care around here when you can’t afford the 50$-75$ co-pays or whatever + the cost of whatever medication the prescribe you.
Alright, so now we’re about to last summer timeline wise. I was admitted into the hospital because I was in so much pain that WHILE DRIVING I blacked out and puked all over myself. I don’t remember calling my best friends dad, I don’t remember talking to him as I drove myself to the hospital, all I remember is the pain. I was admitted and they ran some tests, thinking that it was possibly a burst ovarian cyst or something. Nothing was found, and I was told that I had just probably pulled a muscle in my groin, how groin pain = stomach ache and everything I’m not sure but okay. They’re the medical professionals I’ll take their advice.
Then again, taken back to the ER because I blacked out at a friends house during a bonfire. Same thing, probably just an ovarian cyst or a kidney infection. Drink more fluids, you’ll be fine. 4 more visits to the ER and to the local health clinic. Nothing was wrong, they just kept waving me away. Well by now at the 2 ERs in our town I am labeled a drug seeker.
Which brings us into this year, and where there is finally some light at the end of the tunnel. End of January, I’m back to the same old thing. Puking, pooping and blacking out. There were days where I was so tired I couldn’t even get myself out of bed to go to work or school, anytime I would stand up or sit down I would get so dizzy. I just felt like crap, but I kept pushing it off. No doctor, no money and no point in going to the ER or anything. I blacked out again while driving, I don’t remember HOW I got into the Walgreens parking lot, I don’t even remember leaving the school. My stomach hurt, I couldn’t keep anything down and I was just miserable. But I still kept pushing on.
And then I collapsed at work. Straight up fell down in front of everyone. I came too holding my stomach crying about how badly it hurt, and in a wheelchair. I was sent to the ER yet again, and I was terrified.
This time I was lucky and my grandma was with me, when we met with the ER doctor I told him EVERYTHING that I’ve just told all of you. I cried on him and seriously just let it out. I was embarrassed and in pain and I just wanted it to feel better NOW. Within 20 minutes of me being there, he had me ordered for a catscan with contrast, something for the pain and something to help me with the fact that every time I moved I felt like the world was going to end and I was going to puke. (Dear lord I love zolfran)
I was once again hospitalized, because from throat to anus I was completely inflamed, severely dehydrated and for pain management. While in the hospital I had to go through all the embarrassing things that I know many of you have gone through. Every time I had a bowl movement I had to page for the nurse, they had to come look at it and see how much was there. Multiple times per hour, they would come and check it. I felt horrible and so embarrassed. They ended up taking a stool sample, and more blood than a vampire, and scheduled me for a colonoscopy and an endoscopy. The sad thing is that with the colonoscopy prep, I didn’t even need to drink ½ of the bottle. I was already pretty much cleaned out from being sick. The nurse said that she had never seen someone run clear so quickly before.
The day before the procedure I got to meet one of the doctors from the group that would be doing it. I told him straight up that I don’t have insurance, and don’t know how I’m going to pay for any of this. He told me that based on my symptoms he thinks it might be either Chron’s or a Colitis, and that I would need a doctor like him and we would cross the bridge of payment when we got to it. He then talked to me like a human being, which at this time made all the difference in the world to me. He asked me about Jessica, not about the sickness, and he told me about himself and his partners. Just that little bit of kindness really REALLY helped me not be so afraid.
The procedure wasn’t so bad, I just cried a lot during it because having the tube in my throat gave me a panic attack, but one of the nurses stayed with me and kept rubbing my face like my mom used to when I was little and it really helped.
A day later and I was released. I still was having poop issues and everything but I could now move around a little bit better and the pain was pretty manageable so they said that with nothing else to hold me on.
Two days after being released from the hospital I got a phone call from the health clinic, and they told me that I had tested positive for salmonella, and that I needed to keep taking the antibiotic that the hospital had prescribed to me. They asked me about where I’ve eaten and all that and then hung up. WHAT!?! I had never been prescribed an antibiotic, and hadn’t eaten out or anything so I wasn’t sure WHERE I could have picked it up at. Went back to the health clinic and talked to the head doctor there, she sent me back to the ER because it hadn’t been reported to them and since it wasn’t reported properly I needed to get it looked at. Because of the improper report, I had to tell work and school and call and inform my best friend who had just had a baby, because according to the file I had something worse than just food poisoning, I was highly contagious. That was seriously more embarrassing than anything I think I’ve gone through yet, to have to call my boss, my school counselor and my best friend and tell them that I could have put people at risk.
Once back to the ER with the note from the head doc in my hand I was treated like complete crap. At the end of that visit all I took away from it was that it was my fault that I was sick, and I didn’t do what I was supposed to do. Got a script for an antibiotic and away I go.
So now I get the call from the GI doctor’s office, and I need to come in. Great, okay. So I go in and tell them about everything that had happened and they tell me that well they know I’ve got some form of IBD but they’re not sure which one. They tell me that the salmonella was probably a false positive but to finish the antibiotic anyway. They want me to start on a prednisone taper and asacol. Fine, I remind them that I do not have insurance and that I will be paying for all medication out of pocket. The medication was hella expensive, 780.00 for the Asacol alone. I wasn’t able to get that filled but was able to get the prednisone. They also weighed me, and from the time I had been hospitalized until about 3 weeks later I had dropped nearly 50 lbs.
Once on the medication I kept having issues. I didn’t think it would go away immediately but I also didn’t expect to start passing whole pills and everything either. So I called the doctor, was told to go straight to the ER. Once there I get treated like crap again. They didn’t take me seriously, the ER doctor kept calling it a “stomach bug” when I politely corrected him and told him I was told that I had an IBD he shrugged it off and told me to eat more. I was never so boggled in my life. Eat more? How much more could I eat? Nothing I ate would stay down, not even plain water. I cried the whole way home that night. Called the doctors office in the morning and was put on another antibiotic and a probiotic.
So the stomach ache is still here, and I’m still best friends with my toilet. There are days where I want to sleep in the bathroom so I don’t ever have to go far. It’s embarrassing and I think I’ve cried more the last few weeks than I did the entire time after my mom passed away.
I go back to the GI doctor tomorrow for a follow up and I don’t have anything good to say. I’m still not feeling well. I’m at my ropes end with all of this. I look like a blimp, even though I’m losing weight my stomach swells so badly that I can’t even fit into my clothing, and the clothing that I do fit into at the beginning of the day by the end of the day is either too tight of is falling off of me.
I’ve gone back to work on short shifts, but have had to call off more than once, and I don’t qualify for the FLMA because I haven’t worked the appropriate amount of hours yet this year, even if you combine them with last years. And school is a whole other ordeal, I’m just really thankful that my professors are understanding.
I’m back to completely relying on my grandma to pay for my bills and stuff. My last paycheck was 38.00, just enough to get my medication filled and some of the juice that I can keep down. I’m feeling lost and just like a crummy human being.
Thank you so much for letting me pour my heart and soul out here, I’m sorry this is so long. But I just had a lot to get off my chest and I don’t really have anyone else I can talk to about it. Nobody else in my life really seems to understand.
Anyway hi.
anda-wave-t: I’m Jess, 25 years old and currently running the undiagnosed circuit, but hoping for something tomorrow. Not really holding my breath though, because I’m sure that I’ll just be disappointed.
