Hello!
I've had a long and frustrating health journey (as I imagine most of you have!). I'm 32 now and I don't even know how far back to go in my description of my symptoms. Since I was a teen, I've had a sensitive stomach. I would go through periods of time (weeks or months) when I would have frequent diarrhea and always needed to know where the closest bathroom was. At other times, my digestion was totally normal. When I was about 21, I got what was probably food poisoning and had severe stomach pain with bloody diarrhea that lasted a couple days. It took months for my digestive system to get back to normal after that; my whole abdomen was so sore and tender. From time to time I would get achy all over like I had the flu, but with no other symptoms that suggested a virus.
When I was 27 and pregnant with my 3rd (and last) child, I started getting some very odd symptoms. I would get very cold and shaky (like chills with a fever, except I had no fever) and have diarrhea (with no abdominal pain). I started having heart palpitations and getting migraines with an aura (the flashing lights and stuff that precede a headache) and tingling arms and legs. I had a brain MRI to rule out anything very serious, but it was clear. After I gave birth to my daughter, I felt much better for a few months. Then I started to get achy joints and muscles, felt cold all the time, developed Raynaud's (where blood vessels spasm in the cold cutting off blood flow to the fingers and, in my case, the feet), severe heartburn, migraines with blurry vision, and random patches of tingling and numbness on my skin. I saw a neurologist and had another brain/spine MRI to rule out MS. The blood work showed a very high ANA (1:640) which is consistent with autoimmune diseases. I had mildly low iron and B12 and started supplementing.
I was diagnosed with Undifferentiated Connective Tissue Disease, which means that it is a disease in the same family as lupus, RA, and so on, but the disease isn't yet "differentiated". It's a real diagnosis, but sometimes doesn't feel like one.
I felt extremely sick for the next 2 years. I had some good days when I felt close to normal, but most of the time I was in a lot of pain (joint/muscle), chilled, dizzy, and having weird neurological symptoms. I tried various anti-inflammatory medications as well as Amitriptyline (Elavil) and Lyrica, but none made a big difference to me.
My heartburn is controlled with 40 mg of Omeprazole. The other symptoms finally calmed down and then eventually all but disappeared after being on 400 mg of Plaquenil a day for a while. It is a medication used in lupus and RA as well as some other forms of arthritis. I don't feel 100% normal, but close enough to live a normal life and I'm extremely grateful for that. I've now been feeling pretty good for about 2 years.
One thing that I still struggle with is digestion though. The area around my anus gets very sore and a bit swollen. I get little cuts or tears there as well which get aggravated when I've had a lot of diarrhea. I occasionally have some bright red bleeding when I have a bowel movement. I also have mucus in my stools sometimes or have gas with mucus but no stool. About a year ago I started noticing more problems with bloating and abdominal pain. Sometimes it just feels like everything inside is sore. I get a lot of pain up under my right ribcage and have had several ultrasounds that were normal and showed no gall stones or anything else wrong.
In the last 6 months, I've gotten more and more pain in my left side. There is a very sore spot in my LLQ and it seems to radiate to my left hip, lower back, and tailbone. Sometimes there's also pain at a spot at the bottom of my ribcage on my back left side. I get pain in my perineum and buttock on that side too. It hurts to sit sometimes. At times, my hip gets so sore that it seems to spread into the groin and down my inner thigh, making me limp. At other times, the pain disappears and I feel fine. My inguinal lymph nodes (the ones that run along the panty line on the left side) get tender and swollen sometimes too. Although I obviously can't really tell as I can't see or touch it, it feels like something is torn inside my rectum on the left side. I have a little cut (a fissure?) there on the anus and also have a skin tag (which I've had for years, but I read that they can appear on the outside when you have a chronic rectal fissure).
I finally switched family doctors because I wasn't getting much of a response from mine. She sent me for abdominal/pelvic ultrasounds twice (normal) and really felt that the hip/back/groin pain was something my rheumatologist (who I see for my autoimmune disease) needed to investigate. I did see her about it, but she felt that it was not a problem with the joint and suggested physio. To me, it's so clear that it's related to my digestive system, but my family doctor said that wasn't likely. About 2-3 years ago, I did see a gastroenterologist for the diarrhea. He ran some bloodwork including for the celiac markers and that was negative. The positive ANA showed up again of course, mildly low iron, and low phosphorous. He concluded (without examining me AT ALL, not even touching my belly) that it was IBS and told me I could experiment with my diet and reduce stress. I was frustrated, but the digestive issues I was having at the time weren't nearly as bad as what I'm dealing with now so I didn't ask for a second opinion or press him for more testing.
In December, I got a new family doctor and she put in a GI referral. I got an appointment quickly and I'll be seeing him tomorrow.
So, that's my story. I posted it because I was reading through all your posts today thinking about my appointment tomorrow. I hope I get referred for a colonoscopy and whatever else is necessary. I feel like there is something seriously wrong. Honestly, I'm hoping it's Crohn's or colitis rather than colorectal cancer. My grandmother had CR cancer, but she was elderly when she got it so no one in the family gets screened for it under 50.
Thanks for listening!
Torontogirl
I've had a long and frustrating health journey (as I imagine most of you have!). I'm 32 now and I don't even know how far back to go in my description of my symptoms. Since I was a teen, I've had a sensitive stomach. I would go through periods of time (weeks or months) when I would have frequent diarrhea and always needed to know where the closest bathroom was. At other times, my digestion was totally normal. When I was about 21, I got what was probably food poisoning and had severe stomach pain with bloody diarrhea that lasted a couple days. It took months for my digestive system to get back to normal after that; my whole abdomen was so sore and tender. From time to time I would get achy all over like I had the flu, but with no other symptoms that suggested a virus.
When I was 27 and pregnant with my 3rd (and last) child, I started getting some very odd symptoms. I would get very cold and shaky (like chills with a fever, except I had no fever) and have diarrhea (with no abdominal pain). I started having heart palpitations and getting migraines with an aura (the flashing lights and stuff that precede a headache) and tingling arms and legs. I had a brain MRI to rule out anything very serious, but it was clear. After I gave birth to my daughter, I felt much better for a few months. Then I started to get achy joints and muscles, felt cold all the time, developed Raynaud's (where blood vessels spasm in the cold cutting off blood flow to the fingers and, in my case, the feet), severe heartburn, migraines with blurry vision, and random patches of tingling and numbness on my skin. I saw a neurologist and had another brain/spine MRI to rule out MS. The blood work showed a very high ANA (1:640) which is consistent with autoimmune diseases. I had mildly low iron and B12 and started supplementing.
I was diagnosed with Undifferentiated Connective Tissue Disease, which means that it is a disease in the same family as lupus, RA, and so on, but the disease isn't yet "differentiated". It's a real diagnosis, but sometimes doesn't feel like one.
I felt extremely sick for the next 2 years. I had some good days when I felt close to normal, but most of the time I was in a lot of pain (joint/muscle), chilled, dizzy, and having weird neurological symptoms. I tried various anti-inflammatory medications as well as Amitriptyline (Elavil) and Lyrica, but none made a big difference to me. My heartburn is controlled with 40 mg of Omeprazole. The other symptoms finally calmed down and then eventually all but disappeared after being on 400 mg of Plaquenil a day for a while. It is a medication used in lupus and RA as well as some other forms of arthritis. I don't feel 100% normal, but close enough to live a normal life and I'm extremely grateful for that. I've now been feeling pretty good for about 2 years.
One thing that I still struggle with is digestion though. The area around my anus gets very sore and a bit swollen. I get little cuts or tears there as well which get aggravated when I've had a lot of diarrhea. I occasionally have some bright red bleeding when I have a bowel movement. I also have mucus in my stools sometimes or have gas with mucus but no stool. About a year ago I started noticing more problems with bloating and abdominal pain. Sometimes it just feels like everything inside is sore. I get a lot of pain up under my right ribcage and have had several ultrasounds that were normal and showed no gall stones or anything else wrong.
In the last 6 months, I've gotten more and more pain in my left side. There is a very sore spot in my LLQ and it seems to radiate to my left hip, lower back, and tailbone. Sometimes there's also pain at a spot at the bottom of my ribcage on my back left side. I get pain in my perineum and buttock on that side too. It hurts to sit sometimes. At times, my hip gets so sore that it seems to spread into the groin and down my inner thigh, making me limp. At other times, the pain disappears and I feel fine. My inguinal lymph nodes (the ones that run along the panty line on the left side) get tender and swollen sometimes too. Although I obviously can't really tell as I can't see or touch it, it feels like something is torn inside my rectum on the left side. I have a little cut (a fissure?) there on the anus and also have a skin tag (which I've had for years, but I read that they can appear on the outside when you have a chronic rectal fissure).
I finally switched family doctors because I wasn't getting much of a response from mine. She sent me for abdominal/pelvic ultrasounds twice (normal) and really felt that the hip/back/groin pain was something my rheumatologist (who I see for my autoimmune disease) needed to investigate. I did see her about it, but she felt that it was not a problem with the joint and suggested physio. To me, it's so clear that it's related to my digestive system, but my family doctor said that wasn't likely. About 2-3 years ago, I did see a gastroenterologist for the diarrhea. He ran some bloodwork including for the celiac markers and that was negative. The positive ANA showed up again of course, mildly low iron, and low phosphorous. He concluded (without examining me AT ALL, not even touching my belly) that it was IBS and told me I could experiment with my diet and reduce stress. I was frustrated, but the digestive issues I was having at the time weren't nearly as bad as what I'm dealing with now so I didn't ask for a second opinion or press him for more testing.
In December, I got a new family doctor and she put in a GI referral. I got an appointment quickly and I'll be seeing him tomorrow.
So, that's my story. I posted it because I was reading through all your posts today thinking about my appointment tomorrow. I hope I get referred for a colonoscopy and whatever else is necessary. I feel like there is something seriously wrong. Honestly, I'm hoping it's Crohn's or colitis rather than colorectal cancer.
My grandmother had CR cancer, but she was elderly when she got it so no one in the family gets screened for it under 50. Thanks for listening!
Torontogirl