Hi Everyone,
I am new to this site after being ill for nearly 4 months now.
I was told I had an ulcer and "colitis" when I was about 15 years old by my family doctor. This was back in the early 1970s.
Over the years I had bouts of severe diarrhea, sometimes with bleeding, sometimes with pus or mucus. However, it usually only made me ill for short periods of time, and I coped with it.
In 2008 I was diagnosed with Chronic Lyme Disease, and the treatment was nearly 2 years of various antibiotics in various combinations. Thankfully, it helped immensely.
In March of this year I started getting very sick --- I did not want to eat, I had bad diarrhea, abdominal pain, and could barely keep anything down. I also was having joint pain. My doctor put me back on antibiotics, thinking the Lyme was acting up again. Within a week I ended up in the ER dehydrated, nauseous, and my abdomen extremely distended though not painful (the nurse asked me if I was pregnant! I am 55 years old!).
They gave me IV fluids, immodium, Levsin, and maalox. My labs were all good except my urine, which showed dehydration and ketones from not eating. The ER doc said he believed I had Crohn's and sent me for CT scan and ultrasound.
Long story short, I had colonoscopy. This doc told me that I probably had Crohn's all along, but the years of antibiotics made it far worse.
I have been placed on prednisone, highest dose 40 mg, now I am tapered down to 10. I still have Levsin, and 1/2 vicodin when absolutely needed for pain.
My abdomen is still hugely distended at times (oh, the joyous sounds of the intestinal rumbling!), I get stabbing pains in my right side, and more constipation now than anything else. Even my right side of my back at the ribs gets painful.
I do not have one specific doctor that I see --- I do not have health insurance, and I rely on the charity care coverage and clinic at my hospital. They are ok docs, but each time I have to go over my case from the start. Some of them give me conflicting advice, some of them offer very little other than "watch what you eat" and "don't chew gum or drink carbonated beverages".
So, I have come here. I believe you all know what this illness is all about, living with it, and I hope for some guidance and support along the way. I would be grateful, because this is the sickest I've ever been in my whole life! And it is frustrating!
Where do I even start in dealing with this?
Thank you for reading this!
Mari
I am new to this site after being ill for nearly 4 months now.
I was told I had an ulcer and "colitis" when I was about 15 years old by my family doctor. This was back in the early 1970s.
Over the years I had bouts of severe diarrhea, sometimes with bleeding, sometimes with pus or mucus. However, it usually only made me ill for short periods of time, and I coped with it.
In 2008 I was diagnosed with Chronic Lyme Disease, and the treatment was nearly 2 years of various antibiotics in various combinations. Thankfully, it helped immensely.
In March of this year I started getting very sick --- I did not want to eat, I had bad diarrhea, abdominal pain, and could barely keep anything down. I also was having joint pain. My doctor put me back on antibiotics, thinking the Lyme was acting up again. Within a week I ended up in the ER dehydrated, nauseous, and my abdomen extremely distended though not painful (the nurse asked me if I was pregnant! I am 55 years old!).
They gave me IV fluids, immodium, Levsin, and maalox. My labs were all good except my urine, which showed dehydration and ketones from not eating. The ER doc said he believed I had Crohn's and sent me for CT scan and ultrasound.
Long story short, I had colonoscopy. This doc told me that I probably had Crohn's all along, but the years of antibiotics made it far worse.
I have been placed on prednisone, highest dose 40 mg, now I am tapered down to 10. I still have Levsin, and 1/2 vicodin when absolutely needed for pain.
My abdomen is still hugely distended at times (oh, the joyous sounds of the intestinal rumbling!), I get stabbing pains in my right side, and more constipation now than anything else. Even my right side of my back at the ribs gets painful.
I do not have one specific doctor that I see --- I do not have health insurance, and I rely on the charity care coverage and clinic at my hospital. They are ok docs, but each time I have to go over my case from the start. Some of them give me conflicting advice, some of them offer very little other than "watch what you eat" and "don't chew gum or drink carbonated beverages".
So, I have come here. I believe you all know what this illness is all about, living with it, and I hope for some guidance and support along the way. I would be grateful, because this is the sickest I've ever been in my whole life! And it is frustrating!
Where do I even start in dealing with this?
Thank you for reading this!
Mari
.