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Kidney, Bladder and GI Issue
SORRY ABOUT THE LENGTH BUT I AM DESPERATE I am a 65 year old female, I am a life long athlete that has been forced to stay in bed in order to survive and not burn more calories than I can consume.
Seeking input regarding a severe, progressive gastrointestinal condition/ accompanied with Gross Hematuria that Urologist and GI Doctor both say are unrelated despite happening together every time.
Is reproducible but has not been explained despite doctors running the same labs and scans over and over.
Core symptom pattern:
Began in May 2025 after being hospitalized for a bowel block. Was released without ever eating anything. Which was strange because with every other bowel blockage, when nasogastric tube was removed they had me eat, pass gas and bowel movement before release.
I have severe abdominal pain (8-10/10) and pressure triggered by UPRIGHT position (standing/sitting)
Able to achieve some relief when lying down so I have spent 11 months in bed to avoid repeat symptoms.
In addition, pain begins shortly after eating even small amounts (2–3 bites)
Associated with early satiety, then nausea and then vomiting.
Nutritional impact:
~56 lb weight loss
Currently unable to sustain any oral intake without severe abdominal pain.
NJ feeding tube recently placed but have not been able to move above 38ml feed because of Nausea and Pain.
Additional symptoms:
Sensation of internal “pulling downward” when upright just under sternum to above belly button.
Diarrhea, Vomiting, Dizziness and a few times passed out
Always accompanied by episodes of gross hematuria following upright activity with supporting pictures of RED urine and clots
Abdomen to back escalating pain
Prior workup:
CT abdomen/pelvis, Gastric Emptying Studies with no documentation of symptoms while doing the study. MRI, MRCP, EGD: reported as normal
ER Visit that resulted in Exploratory Laparoscopy w/ Findings of Difficult Cholecystectomy for Acute Cholecystitis w/ Adhesionlysus of liver, gallbladder, lymph node and tissue. (No gallstones)
ERCP with biliary sphincterotomy (Sphincter of Oddi/ no sustained relief)
CT angiography:
1. No acute vascular abnormality identified.
2. Intra and extrahepatic biliary ductal dilatation. This is somewhat prominent even for a patient status post cholecystectomy. If there are clinical or laboratory findings of biliary obstruction, MRCP or ERCP may be useful for further evaluation.
3. Asymmetric hyperenhancement in the region of the porta hepatis surrounding the intrahepatic ducts. This is nonspecific and could relate to some degree of acute or chronic inflammation or infection. Ascending cholangitis, asymmetric enhancement versus from prior surgery are possible considerations.
Infiltrative neoplasm such as cholangiocarcinoma is possible but unlikely.
If ERCP or MRCP is not performed in the short-term, I would suggest that the patient receive either hepatic protocol CT or MRI/MRCP in 3-6 months.
4. Small sliding hiatal hernia noted (not felt clinically significant)
CYTOLOGY, NON-GYNECOLOGIC
Final Diagnosis
Urine, cytology:
* Atypical urothelial cells (AUC) (Paris category 3)
* Specimen adequacy: Adequate for evaluation
Key concern:
First GI - said I had GERD but dispute no progress with any meds ignored all other symptoms
Urologist seen in January and told me to repeat in May, is not concerned/ because no infections
Second GI was brought in by surgeon as he felt first GI did not diagnose correctly and left me untreated for 9 months despite unintentional weight loss.
Second GI Dr, eventually passed me off to PA as he only sees new patients.
This PA, her clinical notes left out important info when she sent referral to Mayo Clinic/AZ
She has since deleted said clinical notes and rewrote them. (I have screen shots of both)
My symptoms are highly positional and reproducible every time, yet all imaging has been performed supine, where symptoms improve or resolve.
I am concerned about a missed dynamic, positional, mechanical, or vascular compression disorder that may not be visible on standard imaging.
Before feeding tube my daily intake consisted of one 8oz bottle of Ensure that took me 2 hours to drink,
1-2 crackers and chicken broth with 1 tablespoon of rice in it. One-16oz bottle of electrolytes took 56 hours to sip and finish.
Looking for guidance on:
Conditions that are position-dependent
Whether upright or dynamic imaging could reveal abnormalities
Appropriate specialty referral or diagnostic pathway
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So sorry you are dealing with so much. If you subscribe to AI ( you really will need a paid plan to have an in-depth analysis) you can enter every single thing in the narrative you provided doctors’ notes and test results. If your prompt includes a directive to ask you questions before replying you might get a useful response.
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We did get a Premium ChatGPT account. Which helped me push for a surgical consult.
AI was what told me I needed to ask for upright diagnosis. But I am not sure how that can be done as the CT Scan personnel here, tell me that is not a thing right now.
This is also what we found on an AI Search:
An intestinal blockage that occurs only when standing is likely due to a positional issue, such as a hernia or intussusception (telescoping bowel). The most effective way to diagnose this is with an upright/standing abdominal X-ray or an upright CT scan
(Mayo Clinic +1)
We tried to get into Mayo Clinic but according to my doctor’s office I was turned down for a GI appointment and told I should get an appointment with a Back Specialist???
I don’t feel like my body can sustain this much longer, which was why I came on here for help and reading to see if anyone else had a gravity affected issue.
Since I can no longer edit my post, I will add a reply telling people they can ask questions. Definitely a learning process.
Thank you so much for your input! 🙏
I am an open book at this point. I will answer any questions, comments or criticisms.
Honestly I am open to anything.
Never been a dramatic person, but this… well this has taken me to a place of feeling like no one cares anymore.
I have spent eleven months seeing my body change into something I no longer know what to do with.
I have days where I force my husband to go play golf and clear his mind. Then I get out of bed and attempt to do laundry, shower etc. By the time he returns home I am in a bad way.
I can no longer urinate, pain in my upper middle and right under rib cage, vomiting bile and honestly I feel like something is tearing downward inside my abdomen. (Even though I have severe gross hematuria I have never had flank pain or kidney pain)
The pain/pressure is identical to when I have had bowel blocks.
Three times I have let my husband take me to the ER and three times they tell me this is not an Emergency so I have refused to ever return there.
Sorry to keep going on, I just keep thinking I cannot be the only person that is experiencing this.
....I feel for you, my life has turned around too with other illnesses and I long for the past.. and worried about future: I do not know much about your problems but one thing , and maybe I missed it, if they cannot do a CT scan whil eyou are standing up, can they do an MRI while you are standing up? J. I went to our emergency dept yesterday and it was not an Emergency, i waited til I saw on line not too busy... was prepared towait hours... it was cos i dont have dr and walkin clinic gave me stong meds for something and I am not supposed to take them..(another story).. I said I realize its not an emergency but coudl you help... they were great and I know it was not as serious and complicated as your issues, but maybe try again, or is there another local hospital or one not too far away where you could go: wishing you the best... hope you get some help on here.. J.
After using AI, my husband and I are convinced I need a standup CT or something like it. I have been told that the state I live in does not have anything like that. (It is one network medical team) We found that Mayo Clinic supposedly had a Standing CT Scanner. But I do not know for sure.
My issue is definitely gravity/mechanical related. I have had a feeding tube for 4 days now, but I can only run it at 45ml per hour, which means it has to run 24/7 to help me not lose anymore weight. It has helped with the headaches I have had for the last 11 months but not the pain/pressure in my belly.
Where we live there is only one network of medical professionals all connected to the ONE hospital each county has. We do have a new network trying to come into the state but it has been a very slow process.
We had coordinated with family members to use their RV to get me to Arizona’s Mayo Clinic’s and we were so hopeful. Unfortunately Mayo rejected me and I honestly believe it is because the referral they received was so poorly documented that they felt this was something that could be handled locally. I know this because after we were declined, we got the clinical notes and my symptoms were so poorly documented. My husband who was at every visit with me, was stunned that a medical professional would be so bad at chart notes. A patient’s life depends on the information being accurate. Especially in the state I live in, where every doctor has access to the same notes.
One thing I have realized by reading all the post on this site is that Gross Hematuria can be something that just happens and that lots of people have had it for years. The other thing is that there are people in worse shape than me that are still alive and looking for answers.
I was at the point of believing my doctors truly did not care about me and I must have done something wrong. But like someone else wrote. There are many medical professionals that are just too busy to solve medical mysteries.
Thanks for taking the time to share your experience with me.- -KC
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