- Joined
- Dec 20, 2012
- Messages
- 11
I came on here tonight, after an upsetting day at the Endoscopy Center. Not because of the news that I had a polyp in my stomach, or polyps in my colon, and that the Apriso was helping b/c my bowel was nearly normal for the first time in a while - but because of a comment made by my doctor that was rude and insensitive - about my weight, and how I must be taking in more calories, etc. I have lost 55 lbs...in six months - he hasn't seen me in two years...because of money issues, we couldn't afford to go in, and I also have West Nile, so that has been the focus because of the neuropathy pain and a problem with my left leg (I fell and broke my leg 19 months ago, was laid up for 6 weeks, gained weight). I am a 47-year old mom of three, and wife - first started having problems with bowel 24 years ago, after my second child was born, but looking back had all kinds of health issues as a child - ear infections, viruses, fever dreams, and bowel problems.
Anyway, I thought the situation was brought on by the stress in my life, my skin flipped out (never had an issue with it as a teenager) and I was bleeding buckets and having bad cramps and diarrhea - to the point where I would get the cold sweats and have to run to the bathroom before I had an accident - very embarrassing and scary as an adult. After nearly of year of this (went to a military doctor in Germany, but no diagnosis), it just disappeared one day. No more symptoms, my skin, though scarred was no longer breaking out...and I lost weight, had my strength back was was feeling good. I figured it was just the stress of a bad marriage, issues with life, etc. Jump ahead from 1989 to 1997, it came back with a vengeance. I was so sick, I couldn't walk, I was in the bathroom literally 20X a day, bleeding, bile, cramping...suffered from fevers, shakes, loss of appetite. Lost 30 lbs. nearly overnight. Went to several doctors (at this time I did not have good healthcare insurance, was sent to an HMO doctor who could care less), did a colonoscopy, but said they couldn't find anything, sent me home with prednisone...and asulphadine (spelling?). Kept me on the prednisone (x3 years), no weaning on or off, no breaks, just kept me on a large dose, even though it had no impact on my problem. I became so ill I passed out and was rushed to the hospital.
During an attempt to do a spinal tap (I had a high white blood cell count), before they even put the needle in my spine, my heart just stopped. I spent 3 days in CCU, and was sent home on higher doses of everything...problem still ongoing. They sent me to the county hospital to have a barium enema test done, which was one of the most painful experiences of my life. I am not a ninny about needles or procedures, been through some tough stuff in my life...but I was crying and ended up asking the technician while strapped to the table, if this was going to take much longer, and he replied, "What is the matter with you? We don't see any issue." - I said this hurts, my colon is spasming and I am in excruciating pain (same pain I have now when I go the bathroom)...he puts me back upright on the table and looks at the radiograph, and says "oh...you must have Crohn's disease." That was it. They put the table down, and unstrapped me and I ran to the restroom, bleeding and passing the barium.
Two years later, after gaining 60 lbs., my back blew out and my teeth started falling out of my head (the prednisone had softened everything and my bones were collapsing and my jaw couldn't hold my teeth). I never knew enough about the drug then. I am smarter about all the drugs now. I also learned that exercise = more bleeding, more cramping and more diarrhea for me. As do green leafy vegetables (I love salad, suffer for it, but I love it)....and most sugars, juices, breads, meats, dairy products, and processed foods. Which leaves nothing. I was down to boiled chicken broth and small amounts of rice, and still gained weight. One doctor and one NP have said that maybe my body is screwed up and thinks it is starving...my thyroid is normal...or whatever and so therefore it isn't that. My metabolism is slow - b/c I don't work out anymore...but I try to be active.
I have been in and out of remission since 2001 - when I worked really hard on being careful with my diet and my exercise. I have never been skinny and don't expect that it is in my DNA to be so, but I used to be an athlete and know the benefits of being active...and know what and how to eat to be healthy. Unfortunately, I contracted West Nile encephalitis in 2006, leaving lesions on my brain and nerve damage like polio in my left side. This has exasperated the CD. My nerve pain, arthritis pain and skin have been insane. I look like a leper on my arms...I limp because of my left leg and fall a lot (I try to use a cane, but I am such a klutz, it causes more problems than it helps). I receive pain injections in the back of my head for occipital neuralgia and migraines, I have nodules developing on my hand joints, and lumps under my skin that are huge (told they are only cysts).
I feel horrible, I get a fever almost every time I am active (cleaning house, vacuuming, etc.)...if I over do it, I am down for at least a day, sometimes more. I still function because I have to, and even though I am sick all the time, I take care of the house, the dogs, and am trying to develop a hobby...so I don't go crazy. I have no appetite, I eat half of what my husband does, if not less, and sometimes don't eat at all. We have started eating a more Mediterranean diet - more humus, fresh vegetables and fruits (hard on my stomach at times)...and because of recent pain and nausea, I have lost weight. When I do eat, it shoots through me like a cannon. I feel a fullness in my upper abdomen, and pain, a sharp pain when I eat. I saw the NP and he sent me for a Barium CT (awful test by the way). Showed Gallstones and a problem with my left kidney (which was noted years ago). So they did my EGD and colonoscopy this morning...and the doctor who I have trusted and respected for 8 years, throws out this rude and insensitive comment while I am coming out of my haze. My husband tried to defend me and he backed out of the cubicle and wouldn't talk to us. I am dismayed and upset, tired of being in pain, tired of going to the bathroom and tired of being told that I'm too big.
I am on Cymbalta for the pain, Nuvigil for the fatigue, Apriso and Flagyl for the flare, as well as Bentil for the cramps. Humira is out of the question b/c of the other factors with my health.
Just trying to hang on and not go insane. Hoping to find some HOPE and comraderie (spelling again?) on this site. May be going to a new doctor soon.
Anyway, I thought the situation was brought on by the stress in my life, my skin flipped out (never had an issue with it as a teenager) and I was bleeding buckets and having bad cramps and diarrhea - to the point where I would get the cold sweats and have to run to the bathroom before I had an accident - very embarrassing and scary as an adult. After nearly of year of this (went to a military doctor in Germany, but no diagnosis), it just disappeared one day. No more symptoms, my skin, though scarred was no longer breaking out...and I lost weight, had my strength back was was feeling good. I figured it was just the stress of a bad marriage, issues with life, etc. Jump ahead from 1989 to 1997, it came back with a vengeance. I was so sick, I couldn't walk, I was in the bathroom literally 20X a day, bleeding, bile, cramping...suffered from fevers, shakes, loss of appetite. Lost 30 lbs. nearly overnight. Went to several doctors (at this time I did not have good healthcare insurance, was sent to an HMO doctor who could care less), did a colonoscopy, but said they couldn't find anything, sent me home with prednisone...and asulphadine (spelling?). Kept me on the prednisone (x3 years), no weaning on or off, no breaks, just kept me on a large dose, even though it had no impact on my problem. I became so ill I passed out and was rushed to the hospital.
During an attempt to do a spinal tap (I had a high white blood cell count), before they even put the needle in my spine, my heart just stopped. I spent 3 days in CCU, and was sent home on higher doses of everything...problem still ongoing. They sent me to the county hospital to have a barium enema test done, which was one of the most painful experiences of my life. I am not a ninny about needles or procedures, been through some tough stuff in my life...but I was crying and ended up asking the technician while strapped to the table, if this was going to take much longer, and he replied, "What is the matter with you? We don't see any issue." - I said this hurts, my colon is spasming and I am in excruciating pain (same pain I have now when I go the bathroom)...he puts me back upright on the table and looks at the radiograph, and says "oh...you must have Crohn's disease." That was it. They put the table down, and unstrapped me and I ran to the restroom, bleeding and passing the barium.
Two years later, after gaining 60 lbs., my back blew out and my teeth started falling out of my head (the prednisone had softened everything and my bones were collapsing and my jaw couldn't hold my teeth). I never knew enough about the drug then. I am smarter about all the drugs now. I also learned that exercise = more bleeding, more cramping and more diarrhea for me. As do green leafy vegetables (I love salad, suffer for it, but I love it)....and most sugars, juices, breads, meats, dairy products, and processed foods. Which leaves nothing. I was down to boiled chicken broth and small amounts of rice, and still gained weight. One doctor and one NP have said that maybe my body is screwed up and thinks it is starving...my thyroid is normal...or whatever and so therefore it isn't that. My metabolism is slow - b/c I don't work out anymore...but I try to be active.
I have been in and out of remission since 2001 - when I worked really hard on being careful with my diet and my exercise. I have never been skinny and don't expect that it is in my DNA to be so, but I used to be an athlete and know the benefits of being active...and know what and how to eat to be healthy. Unfortunately, I contracted West Nile encephalitis in 2006, leaving lesions on my brain and nerve damage like polio in my left side. This has exasperated the CD. My nerve pain, arthritis pain and skin have been insane. I look like a leper on my arms...I limp because of my left leg and fall a lot (I try to use a cane, but I am such a klutz, it causes more problems than it helps). I receive pain injections in the back of my head for occipital neuralgia and migraines, I have nodules developing on my hand joints, and lumps under my skin that are huge (told they are only cysts).
I feel horrible, I get a fever almost every time I am active (cleaning house, vacuuming, etc.)...if I over do it, I am down for at least a day, sometimes more. I still function because I have to, and even though I am sick all the time, I take care of the house, the dogs, and am trying to develop a hobby...so I don't go crazy. I have no appetite, I eat half of what my husband does, if not less, and sometimes don't eat at all. We have started eating a more Mediterranean diet - more humus, fresh vegetables and fruits (hard on my stomach at times)...and because of recent pain and nausea, I have lost weight. When I do eat, it shoots through me like a cannon. I feel a fullness in my upper abdomen, and pain, a sharp pain when I eat. I saw the NP and he sent me for a Barium CT (awful test by the way). Showed Gallstones and a problem with my left kidney (which was noted years ago). So they did my EGD and colonoscopy this morning...and the doctor who I have trusted and respected for 8 years, throws out this rude and insensitive comment while I am coming out of my haze. My husband tried to defend me and he backed out of the cubicle and wouldn't talk to us. I am dismayed and upset, tired of being in pain, tired of going to the bathroom and tired of being told that I'm too big.
I am on Cymbalta for the pain, Nuvigil for the fatigue, Apriso and Flagyl for the flare, as well as Bentil for the cramps. Humira is out of the question b/c of the other factors with my health.
Just trying to hang on and not go insane. Hoping to find some HOPE and comraderie (spelling again?) on this site. May be going to a new doctor soon.
It's truly terrible what you have been through. A couple questions:
