Hey guys, nice to meet you!
I'm still wrestling with diagnosis issues, and I could certainly use some encouragement and feedback if anyone has the same issues (and I was tempted to post this in the "testing" thread, but it's a bit more airy-fairy than that). Also I like to tell stories (it's my thing). So this is a bit verbose and I won't be offended if everyone ever decides there's a bit TL;DR going on.
The possibility of my having Crohn's only really arose in January this year, but looking back a lot of issues point in that direction. It all started when I was fifteen, when I developed a very nasty peri-anal abscess (bigger than a cricket ball) and - being an embarrassed, self-conscious teenage girl - I didn't tell my mother about it until it was completely unavoidable (I even went horse riding with it. Then my instructor decided we should do sitting trot, and I nearly burst into tears...). It got cleaned out under a local anaesthetic (ow ow ow ow), and I ended up on horse-pill antibiotics. My mother was a bit weirded out, and we agreed that I'd tell her if it happened again.
It happened again. And again. And again. I'm now nearly 35 years old (birthday in three weeks) and I literally have lost count of the number of surgeries I've had to correct peri-anal abscesses. Doctors ask how many I've had and I honestly cannot tell them. I had one surgeon look in vain for a fistula when I was about 20. There's now so much scar tissue down there that doing it under a local is not an option (I have mixed feelings about this. My pain tolerance is really good and general anaesthetics trigger my depression, but then again... ow. So much ow). I've had many adventures having to walk into unfamiliar GPs and drop my pants (including a GP whose eyes bulged, said "I'm not touching that!" and sent me straight to the ED).
That whole time? I thought I had hidradenitis suppurativa (HS). I had doctors say it in this puzzled way - an odd presentation, they thought (usually you get lots of little bumps, not one big one), and since it's not a common condition and most of them have never seen it, they just shrugged and moved on. I had one GP mention in passing that it could be Crohn's, but she didn't test for it - just shrugged and moved on. "You don't want Crohn's," she said (but who does?).
This year, I had another trip to the ED (rapid accumulation, antibiotics ineffective, I know the drill). After being admitted and getting surgery, my follow-up appointment led to the surgeon suggesting an MRI to look for a fistula. I did that. Then I went to see another specialist, who just happened to have recently done a dermatology residency.
She, unlike any other doctor I'd ever seen, actually knew what HS looked like, and said in no uncertain terms that I did not have it. She proposed Crohn's.
Since then it's been a bit of an emotional rollercoaster, especially after I mentioned that, ever since my late teens, I've been prone to really random - seriously random - stabbing agonising gut pain. I've been checked for gallstones. I've been checked for kidney stones. I've had a laparoscopy for endometriosis (I did in fact have endometriosis, and I'm just recovering from a second laparoscopy which was negative - they got rid of it, and I'm still getting agonising menstrual pain with no obvious cause. Crohn's?). I've had an abdominal MRI. I've had an MRI enterography. I've had a colonoscopy.
Everything looks normal. My pelvic region is very healthy. My colon is normal. My kidneys are - and this is a direct quote - "photogenic" (best radiographer ever). My heart (long story) is stellar. My blood test results are great (liver enzymes tend to be a bit high, but not worryingly so), even better since I started eating keto.
Onto the diet issues. I feel sick after eating. It's been true for years. I kept going lower and lower G.I. - which would help for a while, but then the nausea would come crawling back. I got diagnosed with fructose malabsorption and gave up wheat (and fruit). This helped, but still: sick. Eventually I said, "Screw it, I'm going to go wild and try keto" even though part of me thought it was a fad. I feel 100x better. I still get gut pain, but I don't feel sick after eating any more. It sounds very much like it works for some and not for others, so I can't draw a lot of conclusions from it, but my new G.I. specialist seems to think I am doing the right thing diet-wise. (also my HDL is amazing. Woot.)
Re: inflammatory issues - I have hypermobility syndrome, so my joints rub and get inflamed easily (I do a lot of exercise and strength work to support them, which helps). I had childhood asthma which is apparently making a return (lung X-ray scheduled for tomorrow, spirometry the day after).
I've had a calprotectin test. I waited until I was in moderate pain to do it (it comes and goes), and the result was... 95? G.I. doc says that's high, but not so high as to mean it's clearly IBD. It's just a "something isn't right" result. My blood tests come back normal, as I said.
Extra-intestinal symptoms: I get thrush (sorry, is there such a thing as TMI on a Crohn's forum? :ylol: ), especially when I break keto and eat wheat and other high carb things. I get night sweats (so weird). I get joint pain, but obviously that's hard to distinguish from hypermobility issues. I get fatigue, quite serious fatigue, especially during my period (which I thought was endo and apparently isn't). I also have some autonomic stuff, like mild orthostatic issues, but that's probably got more to do with hypermobility.
And even after the fistula correction, I get little abscesses popping up (they're going away by themselves at the moment).
I feel like all this is pointing at Crohn's - specifically ileitis, given the carb issues and the normal colonoscopy - but maybe I'm just desperate for an answer and it's all confirmation bias (the most insidious of cognitive biases!)? I don't want to live from codeine to codeine. I don't want that sharp stabbing pain in my gut, or the cramping that I have to breathe through, or the terrible periods. And I don't want to have to saunter down to ED every time I get rapid accumulation of abscesses.
I realise that by the standards of most Crohnies, I am pretty mild. I don't get bloody D (in fact, I tend more towards constipation, except during my period, and very occasional D the rest of the time). It's still awful to not know when agonising pain will creep up - and I also know that Crohn's is a progressive disease. If I have it, I want to know about it so I can monitor it! Forewarned is forearmed!
It's just that if knowledge is power, right now I feel fairly powerless.
Does anyone else have this much trouble getting diagnosed? What else causes peri-anal abscess and terrible gut pain? Has anyone else got middling calprotectin, great blood work and a negative MRI?
I'm still wrestling with diagnosis issues, and I could certainly use some encouragement and feedback if anyone has the same issues (and I was tempted to post this in the "testing" thread, but it's a bit more airy-fairy than that). Also I like to tell stories (it's my thing). So this is a bit verbose and I won't be offended if everyone ever decides there's a bit TL;DR going on.
The possibility of my having Crohn's only really arose in January this year, but looking back a lot of issues point in that direction. It all started when I was fifteen, when I developed a very nasty peri-anal abscess (bigger than a cricket ball) and - being an embarrassed, self-conscious teenage girl - I didn't tell my mother about it until it was completely unavoidable (I even went horse riding with it. Then my instructor decided we should do sitting trot, and I nearly burst into tears...). It got cleaned out under a local anaesthetic (ow ow ow ow), and I ended up on horse-pill antibiotics. My mother was a bit weirded out, and we agreed that I'd tell her if it happened again.
It happened again. And again. And again. I'm now nearly 35 years old (birthday in three weeks) and I literally have lost count of the number of surgeries I've had to correct peri-anal abscesses. Doctors ask how many I've had and I honestly cannot tell them. I had one surgeon look in vain for a fistula when I was about 20. There's now so much scar tissue down there that doing it under a local is not an option (I have mixed feelings about this. My pain tolerance is really good and general anaesthetics trigger my depression, but then again... ow. So much ow). I've had many adventures having to walk into unfamiliar GPs and drop my pants (including a GP whose eyes bulged, said "I'm not touching that!" and sent me straight to the ED).
That whole time? I thought I had hidradenitis suppurativa (HS). I had doctors say it in this puzzled way - an odd presentation, they thought (usually you get lots of little bumps, not one big one), and since it's not a common condition and most of them have never seen it, they just shrugged and moved on. I had one GP mention in passing that it could be Crohn's, but she didn't test for it - just shrugged and moved on. "You don't want Crohn's," she said (but who does?).
This year, I had another trip to the ED (rapid accumulation, antibiotics ineffective, I know the drill). After being admitted and getting surgery, my follow-up appointment led to the surgeon suggesting an MRI to look for a fistula. I did that. Then I went to see another specialist, who just happened to have recently done a dermatology residency.
She, unlike any other doctor I'd ever seen, actually knew what HS looked like, and said in no uncertain terms that I did not have it. She proposed Crohn's.
Since then it's been a bit of an emotional rollercoaster, especially after I mentioned that, ever since my late teens, I've been prone to really random - seriously random - stabbing agonising gut pain. I've been checked for gallstones. I've been checked for kidney stones. I've had a laparoscopy for endometriosis (I did in fact have endometriosis, and I'm just recovering from a second laparoscopy which was negative - they got rid of it, and I'm still getting agonising menstrual pain with no obvious cause. Crohn's?). I've had an abdominal MRI. I've had an MRI enterography. I've had a colonoscopy.
Everything looks normal. My pelvic region is very healthy. My colon is normal. My kidneys are - and this is a direct quote - "photogenic" (best radiographer ever). My heart (long story) is stellar. My blood test results are great (liver enzymes tend to be a bit high, but not worryingly so), even better since I started eating keto.
Onto the diet issues. I feel sick after eating. It's been true for years. I kept going lower and lower G.I. - which would help for a while, but then the nausea would come crawling back. I got diagnosed with fructose malabsorption and gave up wheat (and fruit). This helped, but still: sick. Eventually I said, "Screw it, I'm going to go wild and try keto" even though part of me thought it was a fad. I feel 100x better. I still get gut pain, but I don't feel sick after eating any more. It sounds very much like it works for some and not for others, so I can't draw a lot of conclusions from it, but my new G.I. specialist seems to think I am doing the right thing diet-wise. (also my HDL is amazing. Woot.)
Re: inflammatory issues - I have hypermobility syndrome, so my joints rub and get inflamed easily (I do a lot of exercise and strength work to support them, which helps). I had childhood asthma which is apparently making a return (lung X-ray scheduled for tomorrow, spirometry the day after).
I've had a calprotectin test. I waited until I was in moderate pain to do it (it comes and goes), and the result was... 95? G.I. doc says that's high, but not so high as to mean it's clearly IBD. It's just a "something isn't right" result. My blood tests come back normal, as I said.
Extra-intestinal symptoms: I get thrush (sorry, is there such a thing as TMI on a Crohn's forum? :ylol: ), especially when I break keto and eat wheat and other high carb things. I get night sweats (so weird). I get joint pain, but obviously that's hard to distinguish from hypermobility issues. I get fatigue, quite serious fatigue, especially during my period (which I thought was endo and apparently isn't). I also have some autonomic stuff, like mild orthostatic issues, but that's probably got more to do with hypermobility.
And even after the fistula correction, I get little abscesses popping up (they're going away by themselves at the moment).
I feel like all this is pointing at Crohn's - specifically ileitis, given the carb issues and the normal colonoscopy - but maybe I'm just desperate for an answer and it's all confirmation bias (the most insidious of cognitive biases!)? I don't want to live from codeine to codeine. I don't want that sharp stabbing pain in my gut, or the cramping that I have to breathe through, or the terrible periods. And I don't want to have to saunter down to ED every time I get rapid accumulation of abscesses.
I realise that by the standards of most Crohnies, I am pretty mild. I don't get bloody D (in fact, I tend more towards constipation, except during my period, and very occasional D the rest of the time). It's still awful to not know when agonising pain will creep up - and I also know that Crohn's is a progressive disease. If I have it, I want to know about it so I can monitor it! Forewarned is forearmed!
It's just that if knowledge is power, right now I feel fairly powerless.
Does anyone else have this much trouble getting diagnosed? What else causes peri-anal abscess and terrible gut pain? Has anyone else got middling calprotectin, great blood work and a negative MRI?
