Hello everyone! I'm a long time lurker here, and finally signed up.
Oh, this is soooo long! I apologize in advance.
My long road started about 8 years ago. I was living a pretty healthy life, active in yoga and Pilates, working part time as a musician and full time in the oil and gas industry. I know during this time I burned the candle at both ends religiously, and I crashed a bit. Seemed just like a bit of exhaustion so I upped the coffee intake, got rest when I could and carried on.
In August of 2006, I had a very bad bout of food poisoning. The diarrhea lasted almost 6weeks. I recovered, and things seemed normal again. October of 2006, I started having problems with various joints (knees, then elbows and ankles). It travelled around my body and the doctors and physiotherapists had nothing to offer, but I found relief with acupuncture. So I chased it with that.
I tried to maintain and even step up my working out (every health professional thought that was the best way to increase energy levels), periodically treating low iron stores, and trying to live through this cycle.
Doc visits always ended the same. :voodoo:Bloodwork was fine except for some elevated inflammation markers, negative for anything troubling, low iron stores. I was sent on my way (So. Many. Times) with a recommendation to increase iron intake, and take Advil if that worked (it always did - but I was worried about taking it all the time). I was the opposite of a "drug seeker" - I didn't want to be on anything- I wanted to find what was wrong and fix it.
This happy circle of confusion and frustration included some trips to a rheumatologist who declared me " clinically normal" at the time of his first examination, though a few weeks prior I'd had swollen ankles and other "tender spots.
Yes tender spots... But all the wrong ones for fibromyalgia... Though based on descriptions in online forums etc, that was what sounded to me like what I was going through.
I really didn't have any intestinal symptoms.
I searched the Internet. I tried many things to try to find out what the problem was. Some things seemed to help, but never for long, and nothing turned out to be a magic bullet. Phased in and out of pain, inflammation and misery for years.
In May 2010 I woke up one day with what I thought was a bug bite on my left quadricep. Within a few days it turned into an angry abscess that sent me to the doc for antibiotics. They seemed to help for awhile, but the thing wouldn't heal. After seeing the doc again, he surmised I had auto immune vasculitis, so I was sent to a dermatologist. She scoffed and stated it was just an infection ( though the culture came back negative) and that I just wasn't on antibiotics long enough. After 12 weeks of rough antibiotics and various potions that may have improved it somewhat but still not healed it, I simply stopped seeing her and quit all the drugs. My sore guts started to feel better, and the state of this wound waxed and waned with all my other inflammatory symptoms.
I did all sorts of blood work and tests during this time - antibodies, rheumatoid factor... Everything negative except for low iron and high CRP and ESR.
In January of 2011, I had the worst joint problems yet with both knees and ankles swollen and completely stiff. I could not walk at all without Advil. Another trip to the doc landed me another referral to a rheumatologist ( same guy) and a solemn guess from the doc that I had rheumatoid arthritis. Stronger NSAIDs prescribed, I struggled on. Negative blood work again.
In late March, suddenly one day all of those pains and swelling stopped cold. I found a tender spot like a blister on the bone just above my left ankle. This spot turned into the most painful and ugly abscess I've ever seen or experienced within a couple days. More antibiotics that didn't help. I thought it had to be MRSA and was advised to be seen in ER. This bought me a lanced abscess, and IV antibiotics in addition to oral ones. Within 3 days, this abscess also grew NOTHING in culture, so the "infectious diseases" folks shrugged (literally!) and sent me back to my family doc with no recommendations, no wound care advice or referral, NOTHING.
This was the true turning point. Many things changed for me based on this proverbial straw. I was terrified I would lose my foot. I was an absolute wreck, and lost 17 lbs in 2 weeks (from 140 lbs to 123), so sick from the antibiotics. I was outraged that nobody could help me. I was on my own. This was March 28 2011.
I reached out to a naturopath I'd known. He had a reputation having success in complex cases where others couldn't seem to help. I saw him April 4th, and he helped me. He changed everything.
He provisionally diagnosed the now massive ulcer and surrounding inflamed tissue as Pyoderma Gangrenosum (as well as the still smoldering wound on my thigh). He suspected I had an IBD, and made some very strict dietary recommendations to reduce the inflammation. Within 2 weeks, I was off of anti-inflammatory meds and feeling a million times better.
I kept the next appointment with the rheumatologist. Since my bloodwork didn't indicate anything rheumatological he couldn't help. He did state that he sees Crohn's patients for arthritic issues and that if I didn't have to run to the bathroom 10+ times a day (I don't), it was unlikely to be my problem.
A few months later (July 2011) I finally got into the wound care clinic (yeah... Thanks guys - I got this :ybatty
Initially I was told in no uncertain terms that my (nearly healed but still ugly) ulcer would never heal without steroids. The doc backtracked when she saw the "before" pictures and wisely advised I continue with treatment. She also made a direct referral to my now GI doc, and I was seen there'd within a month, and diagnosed by scope a month later (Sept 2011). The ulcer was totally healed by August. With no drugs. (the ulcer was about 1.25" in diameter; the inflamed area and satellite ulcers covered an area about 3" x 5").
That GI doc scared me to death after the scope. She said I had moderate to severe Crohn's colitis and that I needed to start biologics immediately.
1 week following that, I discovered I was pregnant so I was definitely NOT taking any drugs, and I felt that I was on a strong path to heal on my own.
Somehow this doctors office forgot to call me to schedule a follow up. So I just continued to see my regular doc and naturopath, and then an OB for the pregnancy. Everything went great until I started to flare at about 20 weeks. That 20 week ultrasound was fine, but I had developed diarrhea and kept gaining and losing the same 4 lbs for the next 8 weeks. Told the doc, and we were going to have an ultrasound at 30 weeks to check.
My son had different ideas.
At 28 weeks my water broke in the middle of the night, and he was born by emergency c section 7.5 hours later. He was so beautiful, but underweight for his age. The flare had caused multiple blood clots in the placenta, and so he was growth restricted ( IUGR). He was 1 lb 5 oz, and amazing!
I healed well from surgery, but was anemic (though nobody told me that). The next 4.5 months while he remained in hospital I tried my damnedest to "pump every 3 hours... But get lots of rest!":ylol2:, to heal, to run that marathon every day while in pain and struggling to get my health under control. My naturopath did everything he could to help - he kept me going and aside from muscle and joint pain, i felt ok.
If I had to do it again, I would definitely do some things differently!
Life stabilized and got better after my son came home, but I continued to struggle with EXTREME exhaustion (new mom, right? Of course).
After a couple of years struggling, and a couple more rounds of antibiotics and NSAIDs (tooth abscess which returned. I know NSAIDs are bad but I really didn't have a choice), I had some bleeding, more exhaustion, and I thought I'd better get checked. Turns out my hemoglobin was 6.6. I was directed to go to the hospital for a blood transfusion. I was anemic for 2.5 years.
Despite the really arrogant doctor who consulted, the transfusion changed things again. I bawled all night in the ER. I realized I am coping with PTSD from my various traumas, and I REALLY don't trust doctors easily. I have been disregarded and dismissed too many times. I also don't trust drugs easily.
As part of the follow up for this episode, I went back finally to my GI doc. She got me some iron infusion treatments and we are working out a treatment plan for the future. I haven't felt this good since before my son was born, and I'm asymptomatic. There is still mild to moderate inflammation throughout my entire colon. I'm tired of being tired so I want to give something a shot to hopefully get me over this healing "hump".
So that's where I am now. I know this was really long, but it was actually cathartic to get it all down... I tried to edit for brevity (and yet here I am making it longer!)
Anyway - hi everyone. Feel free to ask any questions.
Oh, this is soooo long! I apologize in advance.
My long road started about 8 years ago. I was living a pretty healthy life, active in yoga and Pilates, working part time as a musician and full time in the oil and gas industry. I know during this time I burned the candle at both ends religiously, and I crashed a bit. Seemed just like a bit of exhaustion so I upped the coffee intake, got rest when I could and carried on.
In August of 2006, I had a very bad bout of food poisoning. The diarrhea lasted almost 6weeks. I recovered, and things seemed normal again. October of 2006, I started having problems with various joints (knees, then elbows and ankles). It travelled around my body and the doctors and physiotherapists had nothing to offer, but I found relief with acupuncture. So I chased it with that.
I tried to maintain and even step up my working out (every health professional thought that was the best way to increase energy levels), periodically treating low iron stores, and trying to live through this cycle.
Doc visits always ended the same. :voodoo:Bloodwork was fine except for some elevated inflammation markers, negative for anything troubling, low iron stores. I was sent on my way (So. Many. Times) with a recommendation to increase iron intake, and take Advil if that worked (it always did - but I was worried about taking it all the time). I was the opposite of a "drug seeker" - I didn't want to be on anything- I wanted to find what was wrong and fix it.
This happy circle of confusion and frustration included some trips to a rheumatologist who declared me " clinically normal" at the time of his first examination, though a few weeks prior I'd had swollen ankles and other "tender spots.
Yes tender spots... But all the wrong ones for fibromyalgia... Though based on descriptions in online forums etc, that was what sounded to me like what I was going through.
I really didn't have any intestinal symptoms.
I searched the Internet. I tried many things to try to find out what the problem was. Some things seemed to help, but never for long, and nothing turned out to be a magic bullet. Phased in and out of pain, inflammation and misery for years.
In May 2010 I woke up one day with what I thought was a bug bite on my left quadricep. Within a few days it turned into an angry abscess that sent me to the doc for antibiotics. They seemed to help for awhile, but the thing wouldn't heal. After seeing the doc again, he surmised I had auto immune vasculitis, so I was sent to a dermatologist. She scoffed and stated it was just an infection ( though the culture came back negative) and that I just wasn't on antibiotics long enough. After 12 weeks of rough antibiotics and various potions that may have improved it somewhat but still not healed it, I simply stopped seeing her and quit all the drugs. My sore guts started to feel better, and the state of this wound waxed and waned with all my other inflammatory symptoms.
I did all sorts of blood work and tests during this time - antibodies, rheumatoid factor... Everything negative except for low iron and high CRP and ESR.
In January of 2011, I had the worst joint problems yet with both knees and ankles swollen and completely stiff. I could not walk at all without Advil. Another trip to the doc landed me another referral to a rheumatologist ( same guy) and a solemn guess from the doc that I had rheumatoid arthritis. Stronger NSAIDs prescribed, I struggled on. Negative blood work again.
In late March, suddenly one day all of those pains and swelling stopped cold. I found a tender spot like a blister on the bone just above my left ankle. This spot turned into the most painful and ugly abscess I've ever seen or experienced within a couple days. More antibiotics that didn't help. I thought it had to be MRSA and was advised to be seen in ER. This bought me a lanced abscess, and IV antibiotics in addition to oral ones. Within 3 days, this abscess also grew NOTHING in culture, so the "infectious diseases" folks shrugged (literally!) and sent me back to my family doc with no recommendations, no wound care advice or referral, NOTHING.
This was the true turning point. Many things changed for me based on this proverbial straw. I was terrified I would lose my foot. I was an absolute wreck, and lost 17 lbs in 2 weeks (from 140 lbs to 123), so sick from the antibiotics. I was outraged that nobody could help me. I was on my own. This was March 28 2011.
I reached out to a naturopath I'd known. He had a reputation having success in complex cases where others couldn't seem to help. I saw him April 4th, and he helped me. He changed everything.
He provisionally diagnosed the now massive ulcer and surrounding inflamed tissue as Pyoderma Gangrenosum (as well as the still smoldering wound on my thigh). He suspected I had an IBD, and made some very strict dietary recommendations to reduce the inflammation. Within 2 weeks, I was off of anti-inflammatory meds and feeling a million times better.
I kept the next appointment with the rheumatologist. Since my bloodwork didn't indicate anything rheumatological he couldn't help. He did state that he sees Crohn's patients for arthritic issues and that if I didn't have to run to the bathroom 10+ times a day (I don't), it was unlikely to be my problem.
A few months later (July 2011) I finally got into the wound care clinic (yeah... Thanks guys - I got this :ybatty
Initially I was told in no uncertain terms that my (nearly healed but still ugly) ulcer would never heal without steroids. The doc backtracked when she saw the "before" pictures and wisely advised I continue with treatment. She also made a direct referral to my now GI doc, and I was seen there'd within a month, and diagnosed by scope a month later (Sept 2011). The ulcer was totally healed by August. With no drugs. (the ulcer was about 1.25" in diameter; the inflamed area and satellite ulcers covered an area about 3" x 5").
That GI doc scared me to death after the scope. She said I had moderate to severe Crohn's colitis and that I needed to start biologics immediately.
1 week following that, I discovered I was pregnant so I was definitely NOT taking any drugs, and I felt that I was on a strong path to heal on my own.
Somehow this doctors office forgot to call me to schedule a follow up. So I just continued to see my regular doc and naturopath, and then an OB for the pregnancy. Everything went great until I started to flare at about 20 weeks. That 20 week ultrasound was fine, but I had developed diarrhea and kept gaining and losing the same 4 lbs for the next 8 weeks. Told the doc, and we were going to have an ultrasound at 30 weeks to check.
My son had different ideas.
At 28 weeks my water broke in the middle of the night, and he was born by emergency c section 7.5 hours later. He was so beautiful, but underweight for his age. The flare had caused multiple blood clots in the placenta, and so he was growth restricted ( IUGR). He was 1 lb 5 oz, and amazing!
I healed well from surgery, but was anemic (though nobody told me that). The next 4.5 months while he remained in hospital I tried my damnedest to "pump every 3 hours... But get lots of rest!":ylol2:, to heal, to run that marathon every day while in pain and struggling to get my health under control. My naturopath did everything he could to help - he kept me going and aside from muscle and joint pain, i felt ok.
If I had to do it again, I would definitely do some things differently!
Life stabilized and got better after my son came home, but I continued to struggle with EXTREME exhaustion (new mom, right? Of course).
After a couple of years struggling, and a couple more rounds of antibiotics and NSAIDs (tooth abscess which returned. I know NSAIDs are bad but I really didn't have a choice), I had some bleeding, more exhaustion, and I thought I'd better get checked. Turns out my hemoglobin was 6.6. I was directed to go to the hospital for a blood transfusion. I was anemic for 2.5 years.
Despite the really arrogant doctor who consulted, the transfusion changed things again. I bawled all night in the ER. I realized I am coping with PTSD from my various traumas, and I REALLY don't trust doctors easily. I have been disregarded and dismissed too many times. I also don't trust drugs easily.
As part of the follow up for this episode, I went back finally to my GI doc. She got me some iron infusion treatments and we are working out a treatment plan for the future. I haven't felt this good since before my son was born, and I'm asymptomatic. There is still mild to moderate inflammation throughout my entire colon. I'm tired of being tired so I want to give something a shot to hopefully get me over this healing "hump".
So that's where I am now. I know this was really long, but it was actually cathartic to get it all down... I tried to edit for brevity (and yet here I am making it longer!)
Anyway - hi everyone. Feel free to ask any questions.
