Misdiagnosed Symptoms: A Cautionary Tale for Chronic Illness Patients

This past winter, I thought I had a stomach virus, as many in the area were complaining of one. Mine just would not clear up. Have had Crohn's for 50 years (!) and an ileostomy for 42 years. You'd think by now I'd be smarter than I was. Long story short, I let it go on and on. Finally, a friend took me to the emergency room of the local hospital about 3 weeks ago, after all of the diarrhea I'd been having, along with just feeling horrible.



Guess what? I had Salmonella poisoning! And I went into total kidney failure due to severe dehydration. I had been pumping fluids, but as I told my doc, I could have drunk the Grand Canyon full of electrolyte fluids to no avail. I will say the doctors did not listen to me when I kept telling them "THIS IS NOT CROHN'S." I had no pain at all, just constant bag fillings.





I was in the hospital for two weeks, blood pressure bottoming out, just exhausted and sick.



Currently, I am trying hard to get nutritional levels back where they belong, and have gained back a couple of pounds. I can't believe after all of these years, I did not recognize an emergency when I had one. Have dehydrated in the past, but it's been a long time. I guess complacency was my greatest problem, as I've been fairly healthy since my 5th revision 16 years ago.



I hope you're all a bit smarter and more attentive than I was! Now I'm back on the dreaded Prednisone, tapering once again, because my small bowel was so inflamed. Getting doctors to really listen to me was a problem as well. I'm not one to hold back and as I told one of them I've lived longer with this than you've been alive. I begged for diarrhea meds stronger than Imodium (which is useless). They kept saying they couldn't check the diarrhea until they found the cause, thus making it all drag out even longer. They tested me for C-Diff four times. I do volunteer at a local hospice, and am exposed to a lot of very ill people as I do work with the dying patients.



I don't know about where you live, but locally we now have "hospitalists" who come and take over your case. It was horrible. I do not like the trend in medicine at all. My doctor finally came in and took over. The "hospitalist" who did not know me at all was with me maybe one day and rotated within less than 36 hours. Doesn't give them time for anything but a list of symptoms.



I asked if I needed to call my hospice in, and they told me I was entirely too spunky. That made me feel better.



Just take care of yourselves and don't be as dumb as I was this time around! Good grief. If I make it to December, I'll be 70 years on this Earth. Apparently, I needed a good wakeup call and a more than gentle reminder of what can go wrong sometimes.

Lily, I'm 63 and I was 39 when I had my cancer surgery (which resulted in my colostomy).  Throughout the interim, it has been a journey full of twists and turns (including 4 hernia surgeries and more than 12 colonoscopies).  



I'm not sure that everyone around me is fully aware of what's implied but, given that it was cancer, I'm much happier "on this side of the grass":  I pick-up the grand-children after their school.  My daughter is 36 today and my 34 y.o. son is coming to do some repairs to the house today.



As you might know, in Canada, our medical care is covered by the government *.  When I turn 65 and old age security kicks-in, my medications will also be covered.  Life is not so bad ...



* I'm really unclear why Americans are fearful of medicare!!

Thank you for posting this much-needed reminder. Because we ostomates are the patients who often cause our physicians to scratch their heads and/or roll their eyes, we many times hold back when we know something is terribly wrong. Holding back is why I am an ostomate in the first place.

I am sorry you had to get so ill before they took notice and very glad hospice wasn't the end result.

For 3 months now, I have been complaining to my PCP and GI and they just kept putting me off. I have severe, off and on pain in my lower right quadrant. They just kept saying (the GI was much less attentive than my PCP), "Well, you know it's not diverticulitis! That would be pain on the left side with fever and vomiting."

Four years ago, as they wheeled me into the OR for exploratory surgery because I had less than 24 hours to live, I still had NO fever OR vomiting. I reminded my PCP of this last week when the pain was so bad I went to the ER. He immediately ordered a CT scan which I had been asking for since the pain began.

The results were given to me yesterday. I have typhlitis, which I didn't even know was a condition, much less as serious a condition as it is. My PCP started me on two antibiotics, but I'll be honest, I'm terrified. Wikipedia said the mortality rate for this untreated condition is 40%. If the antibiotics don't do their job in 7 days, I will likely have to have a right hemicolectomy.

I was just going to sit back and let the antibiotics try to do their job, because like you, I'm weak, tired, nauseous, and sickly after three months of this pain and the accompanying symptoms of typhlitis. But after reading your post, I called the Radiology Department here and had them immediately fax the CT scan to my GI at the Mayo Clinic and called my PCP to fax yesterday's progress report and most recent labs to him. If I do need surgery, there is no doubt in my mind, I will not survive if I have it done here. We have one GI here in town and he appeared squeamish at just the thought of having to do a colonoscopy through a stoma. He's new, just a kid, and younger than my son. I'm 62 and hope to be around another couple of decades. Since I almost didn't make it in 2009, I have a new appreciation for life and all that comes with it, bumps, clouds, debts, etc.

So thanks for the reminder and keeping us in the loop. I learned two new medical conditions in the past 24 hours. Had I not been so insistent about getting a CT scan (one of many over the past 5 years), we would still be in the passive stage regarding pain that comes with few other symptoms.

I've attached the links to these two terms for newbies like myself.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1963806/

http://www.mayoclinic.org/tests-procedures/colectomy/multimedia/right-hemicolectomy/img-20007591

Take care and God bless you. I pray your full recovery will be quick in coming. Loretta