allieinwonder
Moderator
- Joined
- Oct 22, 2010
- Messages
- 1,002
Hey guys....
So most of you won't know me, but I was a regular member of this forum years ago when I was, like you, frustrated and undiagnosed. I ended up diagnosed with Behcets disease, an autoimmune vasculitis (inflammation of the blood vessels) in December of 2012. Slowly but surely I stopped coming around, which I regret because I love to help others who are in my past shoes, frustrated and desperate for answers. I also want to help others who might have Behcets disease, and have a hard time because A) doctors aren't well versed in Behcets, especially in the USA and B) it is a disease that doesn't primarily effect the gut, but there are patients like me whose disease mimics crohns very well, especially in the beginning.
Some more background: I have chronic abdominal pain, right below where my left ribs end. I had bacterial bronchitis a couple weeks ago and was on antibiotics for it. I was on Humira in 2017, and was doing very well on it, but my new insurance this month denied my prior auth for it, so my last dose was mid-December.
Anyway, I'm back because I need some GI issue support. Last Sunday, my left abdomen next to my belly button started hurting severely. Pressing on it made me feel like I was going to pass out. 24 hours later I was in the ER getting a ct scan and was diagnosed with constipation. I was confused as I had been having regular bowel movements the week prior, normal ones actually (which aren’t normal for me, mine are on the smaller harder side). I went home and did as they said: miralax, colace, lots of water. I also made sure I ate healthy and added a probiotic yogurt. 5 days later, and 8 BM’s later, I’m still in severe pain. Same place. My hydrocodone, when I give in and take it (I know it isn’t good for the gut), isn’t touching the pain. I almost feel like I'm not absorbing it. In desperation I did an enema this morning, and a small, normal BM was all that came out. The pain has been severe, very much so when I move. I started sweating a lot/having chills yesterday but I have no fever. My legs felt like jelly last night and I have felt weak overall since the pain started.
Obviously I'm calling my GI on Monday, but I feel so defeated right now. I feel so unsupported by the medical community. I know its only been a week, but this pain is so severe that a week feels way too long. And calling my GI means I have to wait for the appointment, then possibly wait for another colonoscopy...that is so daunting. I feel like no matter how hard I try to get my health in order, something comes along and all my hard work feels like its for nothing.
So most of you won't know me, but I was a regular member of this forum years ago when I was, like you, frustrated and undiagnosed. I ended up diagnosed with Behcets disease, an autoimmune vasculitis (inflammation of the blood vessels) in December of 2012. Slowly but surely I stopped coming around, which I regret because I love to help others who are in my past shoes, frustrated and desperate for answers. I also want to help others who might have Behcets disease, and have a hard time because A) doctors aren't well versed in Behcets, especially in the USA and B) it is a disease that doesn't primarily effect the gut, but there are patients like me whose disease mimics crohns very well, especially in the beginning.
Some more background: I have chronic abdominal pain, right below where my left ribs end. I had bacterial bronchitis a couple weeks ago and was on antibiotics for it. I was on Humira in 2017, and was doing very well on it, but my new insurance this month denied my prior auth for it, so my last dose was mid-December.
Anyway, I'm back because I need some GI issue support. Last Sunday, my left abdomen next to my belly button started hurting severely. Pressing on it made me feel like I was going to pass out. 24 hours later I was in the ER getting a ct scan and was diagnosed with constipation. I was confused as I had been having regular bowel movements the week prior, normal ones actually (which aren’t normal for me, mine are on the smaller harder side). I went home and did as they said: miralax, colace, lots of water. I also made sure I ate healthy and added a probiotic yogurt. 5 days later, and 8 BM’s later, I’m still in severe pain. Same place. My hydrocodone, when I give in and take it (I know it isn’t good for the gut), isn’t touching the pain. I almost feel like I'm not absorbing it. In desperation I did an enema this morning, and a small, normal BM was all that came out. The pain has been severe, very much so when I move. I started sweating a lot/having chills yesterday but I have no fever. My legs felt like jelly last night and I have felt weak overall since the pain started.
Obviously I'm calling my GI on Monday, but I feel so defeated right now. I feel so unsupported by the medical community. I know its only been a week, but this pain is so severe that a week feels way too long. And calling my GI means I have to wait for the appointment, then possibly wait for another colonoscopy...that is so daunting. I feel like no matter how hard I try to get my health in order, something comes along and all my hard work feels like its for nothing.
