- Joined
- Sep 8, 2014
- Messages
- 7
I guess its time for my story, one that after decades finally getting the information to peace it together. At the moment I'm 42 years old and live in southern Cali. My problems have been most of my life. When i was between 5 and 10 I had a lot of troubles going to the bathroom. Seemed like I was endlessly constipated and to young and to embarrassed to say anything. I remember at one point my mother found me straining in the bathroom once and put me on castor oil for about 2 weeks. It really didn't do anything and as children will do it, I lied that it made things go away and I was better. It didn't, it didn't really do anything but taste bad. The constipation was a constant and not knowing any better at that age assumed it was normal. I just didn't have bowl movements all that ofetn. I was also a very heavy child. My mom always had me on some fad diet or another to lose weight and regardless it just didn't budge. When I graduated High School I weight 264 lbs and my feet hurt a lot. Everyone always deemed it from my weight regardless of the pain it was mostly ignored my anyone who could initiate anything about it.
By the time I was 21 my bowl movements had morphed from constant constipation to constant diarrhea.
I know at one point I lost 100 lbs in a matter of about 6 weeks. At the time I was apart of an HMO, before they were everything. They did a test for blood or parasites and both came back negative and they said it had to be my diet, take Imodium as needed. About 2 years of suffering I changed jobs and thus changed insurance. The first time the doctor saw me he already told me that something was wrong internally (I came in with a swollen thumb joint) and thus the path towards a crohn's diagnosis began. Barium enemas, gerontology referrals, colonoscopy and eventually a regiment of Pentasa. After the Pentasa I was back in with a back pain, and xrays were done and it was deemed it was from my commute in my car and Physical Therapy began. I was also complaining again about my feet and basically I got “You have Crohn's your going to have arthritis” and thus again time trudged on. This continued until my early 30's when we switched insurance again back to the first one. I complained again about my hip pain and they did blood works that showed a ton of inflammation so they changed Pentasa to Asacol.
I complained again about my feet and that they pain was now spread to my ankles from the strain of walking different from the pain. What did they do? “You have Crohn's Disease you'll have arthritis learn to live with it”. My reply? “Prove IT!” and so a referral to rhuemetology, xrays of the ankle (not the foot that has bothered me all my life) and said guess we were wrong no sign of arthritis. They MRI'd my ankles (Again not the foot) and said I'd sprained both of them. Anther year wasted.
Next year I complained again of my hip and they saw yet more inflammation on my blood work so lets try Prednisone. I landed in the Urgent care the Wednesday night before Thanksgiving with a blood sugar of over 400. They took me off the Prednisone immediately and then the Friday after thanksgiving put me back on it with insulin saying well you a diabetic now. As you can imagine between the two weight gain went nuts. Again I complained about my hip pain, So they deemed to put me on Remicade in January of 2008. Other places began to swell and hurt. They ankles never settled down, and swelling in my hands and wrists. I informed the doctors as joint pain was listed on the things the paperwork said to notify your doctor about after a new medication. “You have Crohn's Disease you'll have arthritis learn to live with it.”
The hip pain continued this time with a trip to the ER. They found cyst on my ovaries, they deemed that was my hip pain all along and did a full hysterectomy. The hip pain got worse. At first we thought it was was the jostling of the surgery, But it continued, so a referral to neurology was started. Oh its Nueropothy and small disintegration of a disk between L4 – L5 the rest has to be depression or arthritis. Another Mri was done of the skull and said it was clear, but the report only reports the brain, not the now growing lunp on the back of my head.
At this time the HMO decided a regiment of pain meds would deal with things and put me through Pain Management. Of course the constipation side effect of these caused a lot of abdominal pain and also again flared up the hip. At this time the doctors told me and my husband she as an autoimmune disease we will treat the symptoms but that is all that we will do. Pain management was not happy that there wasn't a true diagnosis for the pain and sent me back to rhumetology that boasted I was vitamin D deficient and thus a diagnosis of Fybromialgia was placed on the file. That diagnosis they used to deal with everything from this point on. For 3 years they had me on 50k units of vitamin d a week, neurotin, flexeral, norco, humira, azathioprin, simvastin, 2 kinds of insulin, and it my health didn't budge. Regardless of how bad the pain became, or how many new joints it moved into the answer was always the same. Finally in 2013 I got a referral to an endocrinologist who had a theory. I wasn't eating more than 800 to 1200 calories a day my appetite died when I lost all that weight in the 90s and never came back. But I had bloomed up to 310 lbs at this point. A1C were showing in the 10s at this point regardless of how much insulin or how little I ate. He took me off the insulin. It was a bold move but he took me off that and suggested a controversial herbal medication for the appetite. For the next 6 months I was able to step down off a lot of the pain meds due to other benefits of medicine changes, I was starting to at least have 3 snacks a day at this point and I was starting to lose weight. For the first time I had hope, the A1c's started to come down. Then we changed insurances again.
A new HMO that had no previous predisposed views. Unfortunately I still got a doctor who ignored me more than the last one. The Humira was abruptly halted due to needed approvals for 4 weeks. 4 weeks of screaming and crying in be every join that ever hurt was inflamed and feverish. I couldn't walk I couldn't sit I couldn't even find a way off the hip laying down. I finally got a referral to a podiatrist who diagnosed my feet with a pain combination of birth defects that basically high arches and hammer toes causing the knuckles to be constantly bruised. Orthopedic shoes! Except now the weight loss has increased to 3.5 lbs a week. Losing weight so fast that there is no way to make ortho shoes fit for any length of time. Actually lost half a shoes size in 5 months.
Finally in July 2014 I found a doctor who listens. MRI of my back and hip shows a ruptured disk 16 x 6 mm and a complete calcified pelvic bone (not the hip joint).
And ere is where I sit, we finally have hard evidence that my whole life was not in my head, and now we have to find where else this damage has occurred. Just last week my biceps added to the inflammation list.
It wasn't just gastric arthritis, all these years of walking on birth defects with an auto immune disease can cause real damage. Right now I'm waiting on a Spinal surgeons appointment. Then we have to face ortho for the hip while we find the rest. In the mean time all those colonoscopy and capsule tests that showed my crohn's was not getting worse, the over medication based soling on pain and inflammation markers cause more damage than if they'd just listened to me the first time.
By the time I was 21 my bowl movements had morphed from constant constipation to constant diarrhea.
I know at one point I lost 100 lbs in a matter of about 6 weeks. At the time I was apart of an HMO, before they were everything. They did a test for blood or parasites and both came back negative and they said it had to be my diet, take Imodium as needed. About 2 years of suffering I changed jobs and thus changed insurance. The first time the doctor saw me he already told me that something was wrong internally (I came in with a swollen thumb joint) and thus the path towards a crohn's diagnosis began. Barium enemas, gerontology referrals, colonoscopy and eventually a regiment of Pentasa. After the Pentasa I was back in with a back pain, and xrays were done and it was deemed it was from my commute in my car and Physical Therapy began. I was also complaining again about my feet and basically I got “You have Crohn's your going to have arthritis” and thus again time trudged on. This continued until my early 30's when we switched insurance again back to the first one. I complained again about my hip pain and they did blood works that showed a ton of inflammation so they changed Pentasa to Asacol.
I complained again about my feet and that they pain was now spread to my ankles from the strain of walking different from the pain. What did they do? “You have Crohn's Disease you'll have arthritis learn to live with it”. My reply? “Prove IT!” and so a referral to rhuemetology, xrays of the ankle (not the foot that has bothered me all my life) and said guess we were wrong no sign of arthritis. They MRI'd my ankles (Again not the foot) and said I'd sprained both of them. Anther year wasted.
Next year I complained again of my hip and they saw yet more inflammation on my blood work so lets try Prednisone. I landed in the Urgent care the Wednesday night before Thanksgiving with a blood sugar of over 400. They took me off the Prednisone immediately and then the Friday after thanksgiving put me back on it with insulin saying well you a diabetic now. As you can imagine between the two weight gain went nuts. Again I complained about my hip pain, So they deemed to put me on Remicade in January of 2008. Other places began to swell and hurt. They ankles never settled down, and swelling in my hands and wrists. I informed the doctors as joint pain was listed on the things the paperwork said to notify your doctor about after a new medication. “You have Crohn's Disease you'll have arthritis learn to live with it.”
The hip pain continued this time with a trip to the ER. They found cyst on my ovaries, they deemed that was my hip pain all along and did a full hysterectomy. The hip pain got worse. At first we thought it was was the jostling of the surgery, But it continued, so a referral to neurology was started. Oh its Nueropothy and small disintegration of a disk between L4 – L5 the rest has to be depression or arthritis. Another Mri was done of the skull and said it was clear, but the report only reports the brain, not the now growing lunp on the back of my head.
At this time the HMO decided a regiment of pain meds would deal with things and put me through Pain Management. Of course the constipation side effect of these caused a lot of abdominal pain and also again flared up the hip. At this time the doctors told me and my husband she as an autoimmune disease we will treat the symptoms but that is all that we will do. Pain management was not happy that there wasn't a true diagnosis for the pain and sent me back to rhumetology that boasted I was vitamin D deficient and thus a diagnosis of Fybromialgia was placed on the file. That diagnosis they used to deal with everything from this point on. For 3 years they had me on 50k units of vitamin d a week, neurotin, flexeral, norco, humira, azathioprin, simvastin, 2 kinds of insulin, and it my health didn't budge. Regardless of how bad the pain became, or how many new joints it moved into the answer was always the same. Finally in 2013 I got a referral to an endocrinologist who had a theory. I wasn't eating more than 800 to 1200 calories a day my appetite died when I lost all that weight in the 90s and never came back. But I had bloomed up to 310 lbs at this point. A1C were showing in the 10s at this point regardless of how much insulin or how little I ate. He took me off the insulin. It was a bold move but he took me off that and suggested a controversial herbal medication for the appetite. For the next 6 months I was able to step down off a lot of the pain meds due to other benefits of medicine changes, I was starting to at least have 3 snacks a day at this point and I was starting to lose weight. For the first time I had hope, the A1c's started to come down. Then we changed insurances again.
A new HMO that had no previous predisposed views. Unfortunately I still got a doctor who ignored me more than the last one. The Humira was abruptly halted due to needed approvals for 4 weeks. 4 weeks of screaming and crying in be every join that ever hurt was inflamed and feverish. I couldn't walk I couldn't sit I couldn't even find a way off the hip laying down. I finally got a referral to a podiatrist who diagnosed my feet with a pain combination of birth defects that basically high arches and hammer toes causing the knuckles to be constantly bruised. Orthopedic shoes! Except now the weight loss has increased to 3.5 lbs a week. Losing weight so fast that there is no way to make ortho shoes fit for any length of time. Actually lost half a shoes size in 5 months.
Finally in July 2014 I found a doctor who listens. MRI of my back and hip shows a ruptured disk 16 x 6 mm and a complete calcified pelvic bone (not the hip joint).
And ere is where I sit, we finally have hard evidence that my whole life was not in my head, and now we have to find where else this damage has occurred. Just last week my biceps added to the inflammation list.
It wasn't just gastric arthritis, all these years of walking on birth defects with an auto immune disease can cause real damage. Right now I'm waiting on a Spinal surgeons appointment. Then we have to face ortho for the hip while we find the rest. In the mean time all those colonoscopy and capsule tests that showed my crohn's was not getting worse, the over medication based soling on pain and inflammation markers cause more damage than if they'd just listened to me the first time.
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. I go back to court this Tuesday for SSD. Won the civil appeal last December. Just now got proof I was in pain back all those years.
