- Joined
- Nov 23, 2022
- Messages
- 9
Clearly, I'm undiagnosed, which might be a good. I'm a 28-year-old male. And my health has been on my mind recently. I'm gay, so when my 
is in danger, I must do what I can to save it. For my level of concern, I've decided to write a novel about my hairy ... totally not NSFW.
All my life I thought life was good and normal-almost. To the point that I thought my fatigue was not adhd, but maybe depression. Never did I question my monthly flare of diarrhea or arthritic-inflammation like symptoms. Until things started to change this year... After being possibly misdiagnosed the fourth time, this is where I draw the line.
----this----line---------------
At the beginning of this year, I thought I was getting hemorrhoids. I thought I had a bad case of it. Had the itch and discomfort. Never looked. Studied tons. After a week the pain increased. I asked my PCP for hemorrhoid suppositories. At some point, a lump inside my made it hard to get the suppositories to stay inside. Regardless all my symptoms disappeared within two days. Didn't think much of it...
During a nice warm summer day, it hit me like a truck - some random sickness. And this lingered for a month, on and off. It felt like a cold but without a cough. I was convinced it was strep. Without being insured, I found an inexpensive clinic, tested positive, and started antibiotics. And as you can tell, things only get worse...
After a week after amoxicillin, the "hemorrhoids" returned with a vengeance from hell. The pain was horrific. It felt like someone stabbed my each time I tried to urinate or attempted to relax my bum. To the point, I still have a little PSTD... I cried during these nice warm summer nights. It's something about the pain, fever, and unknowing that made it that much worse. The sphincter muscles were spasming out. I did the googling. I had an impression that perhaps I had a really bad case of hemorrhoids, or less likely an abscess. And I gave in.
I gave up my dignity. Asked my mother to take me to get seen. At age 28, I will rate my first digital rectal exam 2/5 yelp stars. The pain was pretty bad. To remind people, normal digital exams should not be painful... best way to screen for prostate cancer. I was diagnosed with a perirectal abscess. Given antibiotics, was told that I should feel better, perhaps get seen by a GI and do sitz baths. And because I'm hairy (you heard that, I'm a bear) it could be a pilonidal cyst in origin.
And I can write another novel on just sitz baths, they are totally BS, they're made up. Zero evidence on healing fistulas, perirectal abscesses... only good for relaxing the muscle... for pain control, like for hemorrhoids. I digress.
Oh yeah, by this time my ADHD-me stumbles upon some covid email my insurance sent me. Something about shots? And I find out that night I was insured, I should have gone to the ER first time... A real ADHD moment, right?
A week later, I find myself in the ER room for sepsis without septic shock for the pain in my ass. I literally admitted myself with "pain in the ass and fever". Made two elderly people laugh during admission. Tear in my eye, wish I was making this up. And I get the antibiotics through IV, CT scan, and incision and drain. And it was implied that the sitz baths and antibiotics should make me feel better. If not, go to ER. That's round three of antibiotics if anyone is counting. Yes, everyone was aware. Was discharged, with a follow-up in a week to see a surgeon.
After this, I had a very busy month getting seen multiple times. I knew I had insurance. I followed up with the GI - I initially made, out of pocket. Didn't see him again, but later found that he was going to diagnose me on follow-up with chrons (great vine). He saw my CT scans. I did shoot my right foot.
While I was resting, my level of concern started to kick on. The lumps were coming and going. My was not feeling 100%. I go to the surgeon follow-up, but she did not see anything abnormal. Again, I'm new to this stuff. I cut her off when she question the pilonidal cyst theory and pushed her to refer me to an in-network GI. She told me to come back if the lump returns. And I ran... ran fast away from her.
And made an appointment with a new PCP in this new healthcare system (insurance). But he let me down, he was so smart but was moving. So, I let him know about my concerns, he checked my blood, helped me see a new PCP, and got scheduled to see a C&R within 10 days.
It was like 3 days after, a painful cyst-pimple returned near my anus (not inside). Not a good sign. Went to instacare, and antibiotics. On my mary way to normal... 3 days later...
And BAM, back in the ER, where they give me my 6th round of antibiotics, do a CT again, EUA, blood work, and I'm discharged. Barley making it to see the C&R.
When I saw my C&R two days later, I discovered I had stitches from the ER... And he diagnosed me with a fistula. He did the fistulotomy a few days later, I did not do the sitz baths and it healed. I saved my!
End of story...
---no--- this------is--------the-------line ------
And things were okay for a few months. Post antibiotics, I had severe diarrhea every day, multiple times a day. And they slowly decreased, to occasional diarrhea every three/four times a week. My new normal to this day. Bear in mind, it was my normal since the middle of the summer. Pre-antibiotics.
After I reschedule, I saw my long-awaited in-network GI. She agreed to the colonoscopy and also ordered some stool tests. I did the tests as soon as I felt the "flare" come. And everything tested negative or normal. To wait until a colonoscopy.
And that's where I draw the new line. If I understood everything I've learned about IBS/IBD miss-diagnosis, then I'm at the border. If the colonoscopy looks good, then IBS I'll be diagnosed. No upper colonoscopy unless I have good evidence.
And if it is IBS, then be it. I'll give up my dignity, but I will never give up my ass if it is the last thing I do.
And yeah, it's because my anal itch has returned most recently, I have began to go down the rabbit hole of questioning if I do have disease.
And rinse and repeat right? Go to GI, and GI refers me back to C&R. This time C&R finds nothing, implying it is GI related. As I wipe mucous, smell puss and feel the anal lumps come and go. Refers me back to GI. And I start to give up, on them of course.
<----my new level of concern ---- ------ ------>
My symptoms add up each day... And with the little college, I've done, I've decided to become my own advocate, listen to my gut and be my own doctor. Cut the middle man out.
Interestingly enough, at this age, you can do that. Don't recommend it unless you know what to do, how to do and persude.
After all, I've come this far. Defeated death (sepsis), saved my hairy and beat six rounds of antibiotics. All in less than 2 months. Knowledge is power !
So, I have two choices. 1. wait for colonoscopy, 2. find clues. I've choose the later and colonoscopy of course.
learning
During work, I'd listen religiously to IBD, IBS, and GI-related podcasts, and read on .gov articles. The ADHD part of me can learn anything I find fastening, but repeal anything boring. This helped me get a sense of what disease is and how it's perceived. Yes, IBS is perceived differently.
re-analyze
I went to each hospital for unrelated reasons and requested a copy of my CT scans. Learned some DICOM basics, erased my reports (findings), and Paid a small fee to have them re-interpreted with a GI focus. The internet, right?
And my gut was right. Original GI did find something worth looking into. A new interpretation found a perirectal abscess, fistulizing. The second scan shows air bubbles inside, testifying that it's an active fistula. And they saw the final loop of the ileal bowel thickening (5mm). Although (not a doctor) I interpret this with clinical significance in the HPI. Ha i'm a hack! But it is concerning. Yeah, a little paranoid I-am now.
test it
Nowadays, you can order your own tests. It can be cost-effective for some ( insurance, who would have thought). Just like getting your own CT scan re-interpreted, one can order their own lab tests. And I did that, I ordered another Calprotectin stool test. As I did question if I collected the sample correctly the first time.
Depending on these results, I may order my own CRP, ESR, CBC w auto, CMP, and TIBC for under $60 (*** jasonhealth.com, just like goodrx).
You may ask why? Insurance is one good reason, another is being sick of being referred to a rabbit hole. And sick of being sick.
why the sake not?
I am not a hypochondriac at all but my level of concern does increase when my is on the line. As you can tell, i'm a fighter. If tables were turned, any reasonable doctor would do the same. (but with money). I've worked with them, trust me. At this point, I have a pretty good idea of what I have. And if it is IBS, be it so. Regardless, i'll try to keep my novel up to date. 11-29-22.
is in danger, I must do what I can to save it. For my level of concern, I've decided to write a novel about my hairy ... totally not NSFW.All my life I thought life was good and normal-almost. To the point that I thought my fatigue was not adhd, but maybe depression. Never did I question my monthly flare of diarrhea or arthritic-inflammation like symptoms. Until things started to change this year... After being possibly misdiagnosed the fourth time, this is where I draw the line.
----this----line---------------
At the beginning of this year, I thought I was getting hemorrhoids. I thought I had a bad case of it. Had the itch and discomfort. Never looked. Studied tons. After a week the pain increased. I asked my PCP for hemorrhoid suppositories. At some point, a lump inside my
made it hard to get the suppositories to stay inside. Regardless all my symptoms disappeared within two days. Didn't think much of it... During a nice warm summer day, it hit me like a truck - some random sickness. And this lingered for a month, on and off. It felt like a cold but without a cough. I was convinced it was strep. Without being insured, I found an inexpensive clinic, tested positive, and started antibiotics. And as you can tell, things only get worse...
After a week after amoxicillin, the "hemorrhoids" returned with a vengeance from hell. The pain was horrific. It felt like someone stabbed my
each time I tried to urinate or attempted to relax my bum. To the point, I still have a little PSTD... I cried during these nice warm summer nights. It's something about the pain, fever, and unknowing that made it that much worse. The sphincter muscles were spasming out. I did the googling. I had an impression that perhaps I had a really bad case of hemorrhoids, or less likely an abscess. And I gave in. I gave up my dignity. Asked my mother to take me to get seen. At age 28, I will rate my first digital rectal exam 2/5 yelp stars. The pain was pretty bad. To remind people, normal digital exams should not be painful... best way to screen for prostate cancer. I was diagnosed with a perirectal abscess. Given antibiotics, was told that I should feel better, perhaps get seen by a GI and do sitz baths. And because I'm hairy (you heard that, I'm a bear) it could be a pilonidal cyst in origin.
And I can write another novel on just sitz baths, they are totally BS, they're made up. Zero evidence on healing fistulas, perirectal abscesses... only good for relaxing the
muscle... for pain control, like for hemorrhoids. I digress. Oh yeah, by this time my ADHD-me stumbles upon some covid email my insurance sent me. Something about shots? And I find out that night I was insured, I should have gone to the ER first time... A real ADHD moment, right?
A week later, I find myself in the ER room for sepsis without septic shock for the pain in my ass. I literally admitted myself with "pain in the ass and fever". Made two elderly people laugh during admission. Tear in my eye, wish I was making this up. And I get the antibiotics through IV, CT scan, and incision and drain. And it was implied that the sitz baths and antibiotics should make me feel better. If not, go to ER. That's round three of antibiotics if anyone is counting. Yes, everyone was aware. Was discharged, with a follow-up in a week to see a surgeon.
After this, I had a very busy month getting seen multiple times. I knew I had insurance. I followed up with the GI - I initially made, out of pocket. Didn't see him again, but later found that he was going to diagnose me on follow-up with chrons (great vine). He saw my CT scans. I did shoot my right foot.
While I was resting, my level of concern started to kick on. The lumps were coming and going. My
was not feeling 100%. I go to the surgeon follow-up, but she did not see anything abnormal. Again, I'm new to this stuff. I cut her off when she question the pilonidal cyst theory and pushed her to refer me to an in-network GI. She told me to come back if the lump returns. And I ran... ran fast away from her. And made an appointment with a new PCP in this new healthcare system (insurance). But he let me down, he was so smart but was moving. So, I let him know about my concerns, he checked my blood, helped me see a new PCP, and got scheduled to see a C&R within 10 days.
It was like 3 days after, a painful cyst-pimple returned near my anus (not inside). Not a good sign. Went to instacare, and antibiotics. On my mary way to normal... 3 days later...
And BAM, back in the ER, where they give me my 6th round of antibiotics, do a CT again, EUA, blood work, and I'm discharged. Barley making it to see the C&R.
When I saw my C&R two days later, I discovered I had stitches from the ER... And he diagnosed me with a fistula. He did the fistulotomy a few days later, I did not do the sitz baths and it healed. I saved my
! End of story...
---no--- this------is--------the-------line ------
And things were okay for a few months. Post antibiotics, I had severe diarrhea every day, multiple times a day. And they slowly decreased, to occasional diarrhea every three/four times a week. My new normal to this day. Bear in mind, it was my normal since the middle of the summer. Pre-antibiotics.
After I reschedule, I saw my long-awaited in-network GI. She agreed to the colonoscopy and also ordered some stool tests. I did the tests as soon as I felt the "flare" come. And everything tested negative or normal. To wait until a colonoscopy.
And that's where I draw the new line. If I understood everything I've learned about IBS/IBD miss-diagnosis, then I'm at the border. If the colonoscopy looks good, then IBS I'll be diagnosed. No upper colonoscopy unless I have good evidence.
And if it is IBS, then be it. I'll give up my dignity, but I will never give up my ass if it is the last thing I do.
And yeah, it's because my anal itch has returned most recently, I have began to go down the rabbit hole of questioning if I do have disease.
And rinse and repeat right? Go to GI, and GI refers me back to C&R. This time C&R finds nothing, implying it is GI related. As I wipe mucous, smell puss and feel the anal lumps come and go. Refers me back to GI. And I start to give up, on them of course.
<----my new level of concern ---- ------ ------>
My symptoms add up each day... And with the little college, I've done, I've decided to become my own advocate, listen to my gut and be my own doctor. Cut the middle man out.
Interestingly enough, at this age, you can do that. Don't recommend it unless you know what to do, how to do and persude.
After all, I've come this far. Defeated death (sepsis), saved my hairy
and beat six rounds of antibiotics. All in less than 2 months. Knowledge is power ! So, I have two choices. 1. wait for colonoscopy, 2. find clues. I've choose the later and colonoscopy of course.
learning
During work, I'd listen religiously to IBD, IBS, and GI-related podcasts, and read on .gov articles. The ADHD part of me can learn anything I find fastening, but repeal anything boring. This helped me get a sense of what disease is and how it's perceived. Yes, IBS is perceived differently.
re-analyze
I went to each hospital for unrelated reasons and requested a copy of my CT scans. Learned some DICOM basics, erased my reports (findings), and Paid a small fee to have them re-interpreted with a GI focus. The internet, right?
And my gut was right. Original GI did find something worth looking into. A new interpretation found a perirectal abscess, fistulizing. The second scan shows air bubbles inside, testifying that it's an active fistula. And they saw the final loop of the ileal bowel thickening (5mm). Although (not a doctor) I interpret this with clinical significance in the HPI. Ha i'm a hack! But it is concerning. Yeah, a little paranoid I-am now.
test it
Nowadays, you can order your own tests. It can be cost-effective for some ( insurance, who would have thought). Just like getting your own CT scan re-interpreted, one can order their own lab tests. And I did that, I ordered another Calprotectin stool test. As I did question if I collected the sample correctly the first time.
Depending on these results, I may order my own CRP, ESR, CBC w auto, CMP, and TIBC for under $60 (*** jasonhealth.com, just like goodrx).
You may ask why? Insurance is one good reason, another is being sick of being referred to a rabbit hole. And sick of being sick.
why the sake not?
I am not a hypochondriac at all but my level of concern does increase when my
is on the line. As you can tell, i'm a fighter. If tables were turned, any reasonable doctor would do the same. (but with money). I've worked with them, trust me. At this point, I have a pretty good idea of what I have. And if it is IBS, be it so. Regardless, i'll try to keep my novel up to date. 11-29-22.
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