Drs unable to diagnose sister's extreme abdominal pain. Ideas?

@abosier65 Chronic Mesenteric ischemia usually causes pain after eating. The patient usually loses a significant amount of weight as they become fearful of eating. My mother-in-law was undiagnosed as she refused to see a doctor for a year of barely eating due to postprandial pain. Then she ended up in the ER in pain and vomiting. Imaging showed what they thought was a blockage and they waited 24 hours before doing exploratory surgery. By the time they operated, they discovered most of her intestine was dead from lack of blood flow. It is basically like a heart attack to the intestines. It is caused by atherosclerosis and plaque buildup.
It is a pretty rare diagnosis. But I had my husband get checked for it with an ultrasound and MRI with contrast. He does have narrowing of his mesenteric arteries. But no pain after eating. Two vascular doctors said there is no need for him to follow up again unless/until he ever develops pain after eating. They said his collaterals (smaller arteries) were carrying enough blood.

@trishcnwma
Hello,
I found D Mannose some time ago on Amazon.
At the first inkling of a UTI, I take 1 or 2. The dosage is 3.
Just once a day. It helps tremendously.
And I need it very infrequently.
I was also drinking orange juice AND coffee every morning.
That was causing bladder pain.
I stopped the OJ & have 1 cup
of coffee.
Tomatoes can be a problem for me.
It seems anything acidic will cause problems.
Sometimes we have to be Sherlock Holmes to figure out what it is that is causing problems.
My nurse practitioner would order an antibiotic with a UTI but I haven’t had to take any in a long time.
There was no discussion of diet or anything.
I figured it out on my own.

The issue is redundant / tortuous colon. It took two weeks (nearly all in the hospital) to get a formal answer. The process was unpleasant, incomplete (two failed colonoscopy preps), and required a Medicare appeal.

Now I need advice on advocacy / acceptance (as in, how much is too much advocacy/worrying).

1st hospital stay:
Began in the ED when I brought my sister in and said that she presented with symptoms of a partial bowel blockage. A CT was completed that showed a swirl pattern, indicative of an intermittant volvulus formation. General Surgery was consulted and denied any reason for surgery (appropriate). My sister had been in pain (now extreme) for months and said that I would not allow dischage without knowing the underlayig issue. She was admitted. Attending thought it was the existing UTI and too many scripts for diagnosed UTIs without bacteria. I argued the swirl pattern / twisted bowel and he ordered a gastro consult. I stated my case to gastro and they agreed to a colonoscopy to 1) rule out a malignancy and 2) to see if they could determine if they could see a twist (they said something about a floppy colon). Colonoscopy scheduled for that Friday with prep started 2 days prior. 2 rounds of prep failed (with 2-3 nurses required for each void for dementia patient with extreme mobility issues and a history of falls), the colonoscopy was canceled, attending wrote dischage and said she would require outpatient prep/colonoscopy. He agreed that advocating for in-patient prep was reasonable and messaged gastro who did not show before the end of day Friday. Home prep with just me for support was dangerous and I filed a Medicare appeal that kept her in the hospital until Monday when I was able to negotiate in-patient prep and colonoscopy.

Hospital stay 2:
In-patient prep and colonoscopy the following week after discharge. Patient due for admittance on Sunday for Tuesday procedure. I brought her to the ED on Saturday as bowel movements had stopped 10 days prior and now she was not passing gas. She was seen and admitted 1 day early. Prep was begun Sunday mid-day with some reserve (1/4 liter to be completed the next day). I helped since I was at the hospital (as I had done during stay 1). Still no bowell movement Monday morning. A new CT showed colonic ileus and that frightened me. The floor doctor was unconcerned. Gastro on-call was messaged; they came, were concerned, ordered a new CT which was not completed until Monday at approximately 7PM. A second liter of prep had been ordered and the night nurse began working to complete prep with patient. Night nurse had 4-hour shift and her progress notes indicated only 2 cups were drunk. I read the notes just before midnight and called the new nurse to check on prep status - she said she tried but the patient did not want to drink the prep. I said that was not an option and offered to return to the hospital to help, which was refused. Desperate to ensure a successful procedure on Tuesday around 8AM, I asked to speak to the doctor to see if he could tell me the cutoff date for prep completion. No call back. I called again around 6AM Tuesday and was told prep was incomplete and patient still had significant stool. I asked to speak to the floor doctor to confirm procedure status and see if gasto was looped in and was told that the floor doctor would not be able to talk to me. I called the admin for the doctor scheduled to do the procedure around 7:30 AM on the way to the hospital (she had given me her cell # and said she would be working at 7AM). She paged the doctor who called me to say that the procedure was on and would likely start in an hour. He knew there was stool but hoped to see enough to deny malignancy and confirm issue.
In the end, they performed a limited sigmoidoscopy. Notes: "Preparation of the colon was poor. Stool in the entire examined colon. Non-bleeding external hemorrhoids. No large masses noted on this severely limited examination. No specimens collected. Return patient to hospital ward for ongoing care. Will discuss increasing bowel regimen with patient's sister as her primary symptoms are likely due to severe chronic constipation."

I was VERY unhappy as the last two weeks were very stressful for my sister and results were poor due to poor hospital prep/coordination (IMO). I requested additional time in the hospital to allow for more colon clearing and for a physical therapy consult since she was extremely deconditioned from bedrest-only during stay 1 and collapsed in the driveway when we tried to get her into the house upon her arrival home. The fire department had to bring her into the house.

Thank you if you read all of this very long post. On to questions --
1) am I justified in my "helicopter sister" calls, etc. or was it too much?
2) Is my frustration at the outcome justified? It took me at least three months dragging her to specialis visits and hospitals to get to the suggested diagnosis and I feel like there is still a long road ahead with too much potential pain for a mobility-challenged demential patient.

If you understand dementia, you know that all of this pain and hospitalization was traumatizing and takes patients down a notch.

Thanks!

@trishcnwma
It must be traumatizing for both you and your sister.
I definitely understand why your sister doesn’t want to drink the prep solution.
Can they give the solution with an NG tube?
Were enemas tried or suppositories?
It’s going to be difficult to totally clean her out since she has chronic severe constipation.
I think the first step would be to discuss with GI ways to get her cleaned out. It may have to be both in hospital and at home.
Maybe she could get a home nurses aide to help with the procedures at home?

Thank you.
Her sigmoidoscopy was done yesterday. I requested a final
X-ray today to confirm that the stool is clearing approximately, and that there is no blockage or inflammation. She had a PT consult that didn’t go all that well but we’ll try walking her again today. If all goes well, she’ll be discharged. I have to do even more to manage her food to prevent constipation and am busy working on that.

Im just wondering if I’m the worst helicopter advocate ever or if others would do the same as I’ve done.

I’ve been managing her medical for a few w years and have always been the one to research and diagnose all of her illnesses, so I’m a bit😊 controling…more so as her cognition worsens.

@katemu thank you. I took her for a CTA (abdominal arteries) with contrast a few weeks ago and she was cleared for ischemia. I’ve been taking her everywhere to get the root issue.
We finally know it’s redundant colon, likely from prolonged constipation. She eats fairly well - lots of veggies, fruit, yogurt, Ensure, mostly chicken or pork for meats. I need to work up a meal plan for a high-fiber diet and try to get probiotics that help keep things moving.

@trishcnwma And maybe try something like Mira lax in her morning juice. The doctors told me to use it daily or every other day so I don’t end up with serious constipation because I also have exocrine pancreatic insufficiency. There’s no taste and it dissolves quickly and easily.
Is your sister not able to advocate for herself?

No, she has dementia, which is getting worse, and other medical issues.

Yes, the gastroenterologist said I must give her Miralax daily and put her on a high fiber diet. I read that there are specific probiotics for motility issues and am researching that more.

@trishcnwma more is not always better. Learn about types of fiber, use the MiraLAX, maybe add a stool softener if it doesn’t help, trust the docs and try their suggestions for a period of time. It’s very easy to go down a hole with all the supplements and suggestions. Not all probiotics suit all situations. Take care of yourself! You’re a good sister ❤️

@trishcnwma You are having a difficult time with your sister.That prep.is hard to take.Any time that I have had a colonoscopy I just drink it down fast taking a glass every ten minutes.That is easier said than done with a person who has alzheimer's.The Mira Lax in juice sounds a good idea.Good luck with the care of your sister.