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

Hello @claudiabrende

I am so sorry to hear that you are still dealing with these difficult to diagnose problems, but I am glad to hear that you have an appointment scheduled at Mayo next month. They have some wonderful doctors that use a team approach and I hope you report back after your appointment there.

Are you currently taking antibiotics for your infections (UTI and kidney)? Do you have anemia from the blood loss?

I look forward to hearing from you again before your appointment at Mayo next month. What is the date of your appointment?

Teresa

I am so sorry you are going through this! I can only imagine how you must be feeling. If you are concerned the situation is life-threatening you should get help immediately.

I am very disappointed by your difficult journey. After all you’ve done, I would gat a copy of every test and go to a different physician.

@claudiabrende

Welcome to the Mayo Connect community. I am a Volunteer Mentor and am not a medical professional therefore I cannot make medical diagnosis or medical solutions to problems. I can and do share my knowledge, experience, and thoughts with you and others here.

From what I read in your post, your health is waning and yet your team of physicians can't find anything wrong with you. If I were in your shoes, I would find other doctors to see if they can find the problem. If you don't have a gastroenterologist, you will need one since your stomach is where you feel the pain. If at all possible, the Mayo Clinics in Rochester MY, Jacksonville FL,and Scottsdale, AZ are considered the top diagnostic experts. Most insurance coverage works at Mayo. If you can get your doctor to call and get an appointment for you, that is usually the fastest. Or, you can go to the top of this page and click on, "Request Appointment."

If you don't mind, further information about your health would be helpful, i.e.
1. Do you take any medications? If so, which ones? (include over the counter medications, vitamins/food supplements)
2. How long have you been having your symptoms?
3. What tests have your doctors run?
4. What kinds of doctors have you been seeing?
4. What have you been doing to try to relieve the pain?

Your problem may be environmental, or a simple issue that has been missed, or it could be very serious. Without a proper and complete examination of your issues and physical condition, no diagnosis can be made. And, as you know, you remain in pain and worrying about what is wrong. Perhaps others in the community can make additional recommendations or give further information. I would like for @hopeful33250, @travelgirl, and @IndianaScott to chime in here if you have additional information that will help.

Gail
Volunteer Mentor

@gailb Oh, thank you so much for responding to me, and yes I feel frustrated and unheard by some of the doctors in town besides my regular doc and GI doctor. Its been going on for over a year but the last 4 months have been pretty bad with a large intestine infection in April after a colonoscopy, a week later I ended up testing positive for Giardia, before that I had such a severe kidney infection I was vaginal bleeding, and a few weeks ago tested positive for C.Diff for both A and B toxins. It was getting better but now I still have rectal bleeding with increased stools and severe nausea and Zofran or phergan is not helping. They have done a hida scan, gastric emptying study, ultrasound, CT scan and nothing much is showing up beside backed up stool with small bowel loops and fluid filled small bowel loops, Inguinal lymph nodes, mucus, x-ray showing rapid small bowel transit of 30 minutes. I just need so help and insight and have never joined any support group but I'm desperate. They have me on probiotics, a reflux med, abdominal cramping med, nysanta PRN.

@claudiabrende Wow girl so sorry. Sounds like you have a lot going on. I completely understand the feeling of being desperate. That is how I felt too when I had gotten sick with H-pylori. You just want to get back to normal feeling better ASAP enough is enough. It wasn't fun. It took months for the antibiotic to kick in and make me feel better.
Did they do an Endoscope on you at all? I didn't see that mentioned above. Cause I had a slew of tests done when I first got sick everything was checking out A-OK. Except for an Ulcer in the cecum and a few swollen lymph nodes in my chest.
When I look back a lot of how I was feeling had to do with the unknown of what was next? Besides the fact that my stomach hurt, my chest hurt and my throat was on fire from the acid reflex backing up. When you have a lot going on, it is down right miserable.
If I were you, I would get all my records and get second and third opinions. Even if you love the Dr's, it is always best to get 2 or 3 opinions when your feeling that bad, that long. It took me 3 Dr's and 2 yrs later to start feeling better again.
Somethings even after you finish the medicine it takes a while for the body to adjust to not being sick.
I wish you the best..
If you don't mind checking in from time to time it would be great to hear how you are doing?
Hang in there though, I know it hard but it takes time for our bodies to heal.. Try and stay busy, that is how I got through feeling horrible.
Jackie

@travelgirl You just gave me. Thank you!! They did an endo down my throat in April. They did find some inflammation, mucus, and bacteria in my intestine. I do have the honor to go to Mayo but not till September. I feel it's really starting to mess with and I just get depressed. How do they test for HP? I was even considering Whipple's Disease or ZENs.

@claudiabrende

I have had gastrointestinal problems for the past 3 years. Lots of pain in my upper stomach and chest. After my endoscopy, I was told I had esophageal inflammation and gerd (I don't feel heartburn, just pain). I now take Omeprozole, twice a day as needed. It helps me tremendously. I had gastric bypass surgery 4 years ago, so I think it's connected to that surgery. I've also had two duodenal ulcers and a hiatial hernia which was repaired. I take prebiotic as well. The ones my gastroenterologist recommended are Life Balance brand, Alpha Dolphilas. They work great. My problem comes and goes, so I don't take my medicine or prebiotic all the time.

My mother died from pancreatic cancer, so I have big fears about that illness. I know that affects my pain level and increases it. See if there is anyway your doctor can get you into Mayo sooner. I'm hoping the best for you. You're very young and have lots of good living ahead of you.

Gail
Volunteer Mentor

@gailb Me too! I was told I have acid reflux but no heartburn and my Aunt is battling pancreatic cancer, my father passed away of bladder cancer, and colon cancer in my family. I asked my doctor last week if he could try and get me in sooner bit said I had the earliest appointment. Maybe I'll just call Mayo everyday. Lol

@claudiabrende so sorry to hear of your problems ,frustration I am a retired nurse and there's alot of good advice here In particular find a new endocrinologist Ok I would look into a hematologist also .He can check your blood