Hello! I'm a 22 year old female Caucasian / Native American with a family history of immune diseases (MS, Lupus, RA, Thyroid, and Scleroderma) Very sorry for the wall of text, but I didn't want to leave out anything that might be important.
When I was an infant I had extremely bad projectile vomiting. I was admitted to the hospital. My doctor tried me on milk early. It didn't fix the problem, but it wasn't as bad, and saved me from surgery (was told there was a problem with where esophagus connecting to stomach, not sure the name, sorry). Since I was a baby, I've always had random vomiting (not relating to getting a cold or anything normal) though nothing alarming. Also, my skin has been really rough and itchy. I'd break out in hives for little to no reason. Otherwise, I was a pretty normal kid.
Around the age of 12 I hit a snag with a lot of fatigue. It wasn't feeling tired or sluggish all the time. Rather it felt like my arms, head, and legs weighed a tonne and I had to lay down. Also had chronic sinus infections. At 14 I was diagnosed with Chronic Fatigue and severe scoliosis which I had surgery to correct the following year. That same year (now 15), a few months prior to surgery, I began seeing blood in normal looking stool. Rather, blood in the toilet water. It looked like the entire bowl was bright red. Not being a fan of the doctor, I waited, and it went away. A few months later it was back with a vengeance. Extreme stabbing pain in the lower right abdomen, blood, diarrhea, anemia, and hunger. My doctor admitted me to the hospital where after a EGD, colonoscopy, barium swallow, and MRI i was diagnosed with crohns. The only thing noteworthy I remember about the tests were 1) i had severe anemia and 2) my insides looked like hamburger meat from the throat to my **m 3) a jello diet is no fun.
Since then, I've had lesser problems with diarrhea. It seems more a problem of constipation eventually followed a few days/weeks later by cramping/using the bathroom a lot and then, diarrhea. About once a year the bleeding will return and I go on prednisone. This always stops the bleeding. But, once I'm off it it just seems like a gradual decline from constipation/diarrhea > diarrhea > bleeding. The pentasa never seemed to help this at all. When I use the bathroom I get extremely painful cramping in my left side and it almost feels like I'm passing my intestines at times (I know this is not actually occuring, it just feels like it). Also there is an intense burning feeling from my insides to my rear end. About 50% of the time my stool will be very fatty or mucousy (over most of the stool), but I very rarely eat fatty foods and am very thin. I have had a standard blood test for Celiac and it came out negative.
More recently, within the last three years, I've started having problems with regurgitation. It occurs after everything I eat, sometimes for hours, even after consuming a tiny amount of food. I was put on Reglan and it seemed to help, but not totally fix the problem. However, the side effects were too strong. This is probably one of my biggest complaints lately as it makes eating very difficult. Drier food also tends to get stuck and cause the most problems. It feels like there is an intense pressure in my throat while eating which eventually comes up. And up. And up. After about 10-15 times having it come up again it becomes very acidic.
I've begun to have some difficulty remembering things that happened just a few hours ago or information given I cannot recall seconds after hearing it. A sort of "foggy" feeling and intense pressure. Though I think the last is probably more due to TMJ. My vision is also worse each year (enough difference for new glasses prescription), but both my parents wear glasses.
I have minor joint pains, mostly in my hands, hips, and knees.
I have been diagnosed with Reynauld's.
Been told by my dentist that my mouth is very dry and that my teeth are in poor condition due to both that and the acid from regurgitating so much.
My nose runs / itches daily.
I am still having problems with my skin. Generally, it is rough and itchy, sometimes even warm & painful. I will sometimes get psoriasis-like rashes (when i was a kid, my doctor told me this what what is was) that last for weeks. Most of the time I get either patches of flesh-coloured/pink raised bumps in a circle. Looks a little like higher goosebumps but only in a tiny spot. These disappear in a few hours. Or it will be a single, tiny, raised bump, sometimes red/pink, sometimes flesh-coloured, usually with a little blister on the top. Everything itches! I can't find anything in common with when these occur. I've been told I have anything from psoriasis to hives. Leaning more towards hives after literally watching these bumps come out during an allergic reaction to a drink. I also have some splotchy colouring on my legs that seems to get worse with tanning (was told this may be due to nerve damage from surgery).
The reason for my posting, is that my new doctor has told me he believes that I do not have Crohns. He's not sure what I have, but he does not believe it to be Crohns. Something about no structure damage to the intestine. I'm at a loss, my doctors seem to be confused, and I'm not sure what else to do. If anyone could please share ideas, I'm open to anything. Thank you so much!