Abdominal pain, loss of appetite, weight loss, repeated infections

Hi, I'm a new member. I am very thin now from a drastic weight loss and chronic hemhorragic cystitis (fancy name for peeing a lot of blood) I had frustrating and painful gastrointestinal issues for a decade. The link between autoimmune disorders and infections is something I'm going to look into and ask my docs about. So sorry you're so sick. I am too and I hate it.

@joanelle77 I'm also sorry you have felt icky. So you have some of the same symptoms as me? I go to Mayo at the end of the month which I am thankful for. How are you now?

@gailb I ended up calling Mayo and they can get me in on August 28th. Yay.

@mamacita Thank you very much for your kind words. When this first started I went vegetarian for both health and personal reasons and as I continued to lose weight I felt I needed to add some meat back in. After that, any amount of food would cause tremendous nausea that I can only handle a few bits. I agree the worst part for me is not being believed(which luckily I do have some abnormal test to say otherwise, in a weird way) and not knowing but in a few weeks I will get to Mayo and I've been told I'll be in great hands.

@claudiabrende , you are indeed in very good hands. Prayers, smoke signals, good thoughts, and vibes sent your way.

@mamacita do you work at the mayo clinic or just offer support online?

@claudiabrende , I am a Volunteer Mentor. I am retired, and I enjoy helping other people as much as I possibly can. I found good people here who helped me when I joined as a patient needing some answers a couple of years ago. Now that I have more free time, I enjoy meeting people all over who have many of the same conditions that I do. We learn new information and gain understanding with Mayo Clinic Connect. I love it here, and I hope you have a wonderful experience here, as well. "See" you soon!

I am a middle school student with chronic pain from sickle cell anemia. Any tips on how to manage it as I get older?

I can’t comment on all the infections, but because of the gastrointestinal problems and weight loss, I would recommend that your gastro doctor order stool fat testing and fecal elastase to rule out exocrine pancreatic insufficiency. I’m assuming that you’ve had an abdominal CT scan by now, but if not, that should also be done.

Hey, not sure if this thread is still active or not - but, I too, am dealing with a lot of frustrating symptoms. For 2 years now (& progressing), I've been consistently nauseous everyday; a lot of times, 75% + of my day. They found a liver tumor last year, but are just closely monitoring it for now. I can't keep weight on, all my labs are "normal", CTA has already been done; no pancreatitis or endometriosis; an ovarian cyst w/in normal limits for size. Thyroid is normal, but metabolism is thru the roof; I'm not even active. Adrenals / cortisol is good, IDA (since birth), consistently low BP as of last few months, high heart rate w/ PVCs, pelvic pain / bloat...I've got a slew of other problems, but nothing related to this (as far as I know). I can't get in to see any of my Drs til June (GI included) and the nausea is over-the-top. I can't eat or drink hardly; I feel like puking a good portion of my day (sometimes do) and nothing improves; it only gets worse over time. Help! Any ideas or suggestions? I've tried numerous things already... 🙁 thanks y'all.