Hi. I was both saddened and relieved to find this forum - saddened because everyone is hurting so badly, and relieved to know I'm probably not nuts.
My story starts with a severe and life-threatening case of C. Diff. two years ago, at age 26. Before I contracted the bacteria, I was healthy and normal. During the illness I experienced incredible pain, unending diarrhoea, severe dehydration, severe insomnia, and hopelessness. It took over four months of nagging two GPs and several ER doctors before I was tested and consequently diagnosed. By the time I received the diagnosis, I was in bad shape. I was put on Vancomycin. A few days later I was rushed to the hospital, in shock and nearly unconscious. I had not slept for days as I was having bms every 15 to 20 min. or so, and only found pain relief in hot baths. I actually slept in my baths, as much as I could. When I arrived at the hospital, I was immediately given an IV and 3 large fluid bags were dumped as quickly as possible into my veins. I was put on a lot of Metronidazole, Buscopan, Gravol, Ondansetron, and Ketoralac through IV. I live in an isolated city in Canada with one hospital for my entire Territory, and all their isolation rooms were occupied, so I was sent home once I was stabilized and was told to isolate myself from my family. I was told to come back to the ER every 8 hours on the hour for my IV meds. Each treatment lasted from 1 to 3 hours. This continued for 48 days. By the end of my treatment, my hands and arms had so many IV sites, I'm sure people who saw me in short sleeves thought I was a heroin user. During this time I also experienced the joy of a "pink lady" which froze my tongue more than my stomach, and developed two anal fissures that coloured the toilet bowl so crimson, I could not see its contents. I got better, and then relapses a week later. But I survived, colon intact, and somewhat the worse for wear.
I've never really been the same, however. I've had stomach pain since that time, and couldn't digest certain foods. My anal fissures never healed. I still had diarrhoea more days than not.
About a year ago, I began nagging my GP again. The abdominal pain was gaining intensity and frequency, I was constantly nauseous, and my anal sphincter was in constant spasm. I was losing a lot of blood from the fissures - enough that I had to wear a pad. My bowel movements were never normal; it was always either C or D and the C was often from the drugs I took to slow my digestion when I had D, or from the muscle relaxants I was prescribed for the anal spasams. Though I did not really lose much weight, my weight fluxuated with the various diets I tried in desperation. I've tried every diet out there, and the Crohn's diet is the one that has worked the best so far. I had a colonoscopy two years ago to assess the damage to my large intestine the C. Diff. had caused, and the surgeon reported irritation and some inflammation, but no other visible signs, and considered it normal given what my digestive system had just survived. My blood work kept coming back funny - my red blood cells are always too small, even if my iron levels are normal. Often, my iron and B12 levels are low enough to warrant shots - my doctor lets me do these myself at home whenever he tells me I need them.
Fast forward to present day: things have gotten much worse. I've had no more C. Diff. relapses, but I cannot digest any food without swelling up like a balloon. My abdomen becomes so big, I look about 7 months pregnant. The swelling used to go down at night, but it often doesn't anymore. Even plain water upsets my stomach and causes swelling. I don't think it's gas because I rarely pass gass or burp. I'm still B12 and iron aenemic. My rectum is in constant severe spasm, which is resulting in incredible pain and a worsening of the fissures. I can only sit on a donut pillow, and some days I can't sit at all and have to lie on my side. Most days I can only handle liquids, but attempt solid foods. Oddly, I still haven't lost a whole lot of weight. I often feel dehydrated.
5 months ago, my doctor ordered an x-ray series of my abdomen - just normal x-rays. He tested for regular stuff and said my liver seems fine. 1 month ago, I got a top scope with biopsies. The scope surgeon said my stomach looked irritated but normal and recommended anti-reflux meds. I'm already on a very high dose of anti-reflux meds. The biopsies came back normal.
Sooo, I was driven to fib: I told the secretary at my general surgeon's office that he wanted to see me for a follow up appointment (that was the fib). I got an appointment, and the general surgeon now wants to try a small intestine series with a barium swallow. There's no telling when I'll get an appointment for the swallow - all specialists (including radiology specialists and GI specialists) have to be flown in to the city and come only 1 to 4 times per year. Because the government has them flown in, the government will not cover a patient flying out to a specialist unless the case is life-threatening. Since I haven't been able to work since January, I have no funds to make that flight myself, and was told that in fact, even if my GP requested the referral, and even if I could pay to fly out to see a GI specialist, it would not be approved because I'm not dying.
I certainly feel like I'm dying. For the past year I've also had severe joint pain in my wrists and knees. This summer, I spontaneously developed a sun allergy. And even though I protect myself from the sun every day, I still have itchy patches that aren't eczema, and I'm pretty sure they're not allergies. I'm laying on my side as I type this because I can't bear to have my bottom in contact with any surface. I really need help. I do have a history of major depressive disorder and generalized anxiety disorder, and I think my doctor is blaming a lot of my symptoms on that. But those psychological problems have been well-managed for 4 years now, and I feel fine psychologically, if a little exhausted. I don't take anything strong for the pain because those types of meds tend to stop me up, and that makes the fissures worse.
My GP has basically washed his hands of me because he says he can't figure it out, and the general surgeon is so busy, I doubt he recognizes me when he sees me in his office. And added to that, my GP is closing his office for a "break" for the next 3 months. I've called every doctor's office in the city, and we are so short of doctors right now that not one single doctor is willing to take on a new patient. We have no walk-in clinics. People who are new to the city or whose doctor moves away are being forced to use the hospital ER for everyday, mundane things like prescription refills. So the ER staff are crazy-busy, and irritated, and don't have the inclination to help me either. I don't know what to do!!!
I need help - I've been trying to tell my GP I think I have Crohn's in the small intestine, but he just pats my knee and focuses on something else, like my aenemia. He's referring me to a specialist for carpal tunnel syndrome because of the off-and-on pain in my wrists, but that was about 6 months ago, and I haven't heard anything. I thought maybe that doctor would listen to me, but it doesn't seem like I'll ever see that specialist. I heard there was a 1 to 1-and-a-half year waiting list.
Thanks for reading this
~L
My story starts with a severe and life-threatening case of C. Diff. two years ago, at age 26. Before I contracted the bacteria, I was healthy and normal. During the illness I experienced incredible pain, unending diarrhoea, severe dehydration, severe insomnia, and hopelessness. It took over four months of nagging two GPs and several ER doctors before I was tested and consequently diagnosed. By the time I received the diagnosis, I was in bad shape. I was put on Vancomycin. A few days later I was rushed to the hospital, in shock and nearly unconscious. I had not slept for days as I was having bms every 15 to 20 min. or so, and only found pain relief in hot baths. I actually slept in my baths, as much as I could. When I arrived at the hospital, I was immediately given an IV and 3 large fluid bags were dumped as quickly as possible into my veins. I was put on a lot of Metronidazole, Buscopan, Gravol, Ondansetron, and Ketoralac through IV. I live in an isolated city in Canada with one hospital for my entire Territory, and all their isolation rooms were occupied, so I was sent home once I was stabilized and was told to isolate myself from my family. I was told to come back to the ER every 8 hours on the hour for my IV meds. Each treatment lasted from 1 to 3 hours. This continued for 48 days. By the end of my treatment, my hands and arms had so many IV sites, I'm sure people who saw me in short sleeves thought I was a heroin user. During this time I also experienced the joy of a "pink lady" which froze my tongue more than my stomach, and developed two anal fissures that coloured the toilet bowl so crimson, I could not see its contents. I got better, and then relapses a week later. But I survived, colon intact, and somewhat the worse for wear.
I've never really been the same, however. I've had stomach pain since that time, and couldn't digest certain foods. My anal fissures never healed. I still had diarrhoea more days than not.
About a year ago, I began nagging my GP again. The abdominal pain was gaining intensity and frequency, I was constantly nauseous, and my anal sphincter was in constant spasm. I was losing a lot of blood from the fissures - enough that I had to wear a pad. My bowel movements were never normal; it was always either C or D and the C was often from the drugs I took to slow my digestion when I had D, or from the muscle relaxants I was prescribed for the anal spasams. Though I did not really lose much weight, my weight fluxuated with the various diets I tried in desperation. I've tried every diet out there, and the Crohn's diet is the one that has worked the best so far. I had a colonoscopy two years ago to assess the damage to my large intestine the C. Diff. had caused, and the surgeon reported irritation and some inflammation, but no other visible signs, and considered it normal given what my digestive system had just survived. My blood work kept coming back funny - my red blood cells are always too small, even if my iron levels are normal. Often, my iron and B12 levels are low enough to warrant shots - my doctor lets me do these myself at home whenever he tells me I need them.
Fast forward to present day: things have gotten much worse. I've had no more C. Diff. relapses, but I cannot digest any food without swelling up like a balloon. My abdomen becomes so big, I look about 7 months pregnant. The swelling used to go down at night, but it often doesn't anymore. Even plain water upsets my stomach and causes swelling. I don't think it's gas because I rarely pass gass or burp. I'm still B12 and iron aenemic. My rectum is in constant severe spasm, which is resulting in incredible pain and a worsening of the fissures. I can only sit on a donut pillow, and some days I can't sit at all and have to lie on my side. Most days I can only handle liquids, but attempt solid foods. Oddly, I still haven't lost a whole lot of weight. I often feel dehydrated.
5 months ago, my doctor ordered an x-ray series of my abdomen - just normal x-rays. He tested for regular stuff and said my liver seems fine. 1 month ago, I got a top scope with biopsies. The scope surgeon said my stomach looked irritated but normal and recommended anti-reflux meds. I'm already on a very high dose of anti-reflux meds. The biopsies came back normal.
Sooo, I was driven to fib: I told the secretary at my general surgeon's office that he wanted to see me for a follow up appointment (that was the fib). I got an appointment, and the general surgeon now wants to try a small intestine series with a barium swallow. There's no telling when I'll get an appointment for the swallow - all specialists (including radiology specialists and GI specialists) have to be flown in to the city and come only 1 to 4 times per year. Because the government has them flown in, the government will not cover a patient flying out to a specialist unless the case is life-threatening. Since I haven't been able to work since January, I have no funds to make that flight myself, and was told that in fact, even if my GP requested the referral, and even if I could pay to fly out to see a GI specialist, it would not be approved because I'm not dying.
I certainly feel like I'm dying. For the past year I've also had severe joint pain in my wrists and knees. This summer, I spontaneously developed a sun allergy. And even though I protect myself from the sun every day, I still have itchy patches that aren't eczema, and I'm pretty sure they're not allergies. I'm laying on my side as I type this because I can't bear to have my bottom in contact with any surface. I really need help. I do have a history of major depressive disorder and generalized anxiety disorder, and I think my doctor is blaming a lot of my symptoms on that. But those psychological problems have been well-managed for 4 years now, and I feel fine psychologically, if a little exhausted. I don't take anything strong for the pain because those types of meds tend to stop me up, and that makes the fissures worse.
My GP has basically washed his hands of me because he says he can't figure it out, and the general surgeon is so busy, I doubt he recognizes me when he sees me in his office. And added to that, my GP is closing his office for a "break" for the next 3 months. I've called every doctor's office in the city, and we are so short of doctors right now that not one single doctor is willing to take on a new patient. We have no walk-in clinics. People who are new to the city or whose doctor moves away are being forced to use the hospital ER for everyday, mundane things like prescription refills. So the ER staff are crazy-busy, and irritated, and don't have the inclination to help me either. I don't know what to do!!!
I need help - I've been trying to tell my GP I think I have Crohn's in the small intestine, but he just pats my knee and focuses on something else, like my aenemia. He's referring me to a specialist for carpal tunnel syndrome because of the off-and-on pain in my wrists, but that was about 6 months ago, and I haven't heard anything. I thought maybe that doctor would listen to me, but it doesn't seem like I'll ever see that specialist. I heard there was a 1 to 1-and-a-half year waiting list.
Thanks for reading this
~L
