Confusing CT Results and Uninformed Hernia Diagnosis

The results are in and somewhat confusing to me. I have a parastomal hernia. But the scan reader said it was slightly bigger than before. Which means they have known for about a year now that I have had a parastomal hernia and no one told me. No one. And they only list one incisional hernia, not three. So what is the deal? Why did no one tell me before that I had a parastomal hernia for a year? I am going to have a word with my surgeon. And it isn't going to be a nice word. So it was a year ago 2.6 cm with a sac of 4.4 and now it's 2.7 cm with a sac of 5.6 cm. They called that a small increase. But when my surgeon was talking about incisional hernias, she was saying 2.3 was big. So how is 5.6 not big? I don't really understand all this stuff. I wish I did. I wish someone had told me I already had the hernia; I wouldn't have been so worried about getting one. Because if you already have one, you are already doomed. I don't know. I guess I am kind of mad.

Hi infinitycastle52777,

I'm sure you'll find plenty of support from the large community here. It's frustrating when communication breaks down, especially with something as important as your health. It sounds like you're dealing with a lot of mixed messages about your hernia. It's definitely worth having a detailed conversation with your surgeon to get clarity on your situation. Understanding the size and implications of your hernia is crucial, and you deserve to have all the information. Don't hesitate to ask for a second opinion if you feel it's necessary.

Congrats on being part of this community! You'll find lots of support, information, and some really cool people who can relate to what you're going through. You're not alone in this, and we're all here to help each other out.

But the surgeon should have known I already had a parastomal hernia. It should have been in her initial report a year ago. I mean, she claimed to have found 3 incisional hernias and she was all about them.

That's doctors for you; they don't always tell you everything. I've had it a few times over the years with various health problems, and again very recently, when the doctor doing the procedure told me one minute before administering a general anesthetic.

I don't blame you for being mad and upset. I would definitely have more than one not nice word for your surgeon.

Nobody tells you anything unless you ask. I am a two-time cancer survivor and learned this years ago, but apparently, I forgot what I learned because after my emergency colostomy this year, I was very confused, with no instruction, no education, and had a very complicated, prolonged recovery period, which made everything worse. I did have a few ostomy nurses who I am sure said a few words, but I was too sick to listen.

When I asked my surgeon if I had a hernia (I lifted up my shirt to show him), he said, "Yep, you do," and he glanced at my chart to see if I had gained any weight, which I had not, and told me to be sure not to because it would most definitely make it worse. I explained I had been very careful not to do any strenuous exercises, not lifted anything heavy, etc., and I didn't understand how I ended up with a hernia. He then said any movement that involves your abdomen can cause one, reaching, bending, stretching, leaning, etc. I could not believe my ears. Then it all came rushing back. Nobody tells you anything.

Now that I have made this all about me, I apologize and, as others have advised, I would definitely get a new doc. I did.

Hey, Castle. I’m so sorry you have to deal with confusion with your doctor. I am in the same boat at the moment. I can surely empathize.

I had my proctectomy/end ileostomy 11/18 and they denied an infection, sent me home. I ended up at Beth Israel in Boston, and they treated my infection. When I saw my surgeon next, she still denied me having an infection. Crazy.

I think if you can, get another opinion. I agree, they make up specific margins , and when you pass them, they widen the margins so you’re never quite in “need” of their services. 
Is the hernia causing any major issues? What can be done about it right now?

Breathe and stay calm. Easier said than done, but try to stay focused on what you’re trying to accomplish. Don’t yell at your surgeon, they all know each other and will tell each other about it. Trust and believe. 
Next thing you know, you’re Elaine from Seinfeld and no doctors listen anymore. ☹️

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Lee, can you get copies of all your testing?

Believe me, what's printed on those reports says more than any doctor will tell you. Plus, it's in writing, so you can shove it in their face saying, "It's on here and you never told me!"

Also, getting your records arms you on the aggressive side to ask your doc, "Hey, what does this mean?"

Once it's in writing, like ringing a bell, it can't be undone.

Very timely topic. I saw my urologist yesterday. Waited 1.5 hours past my appointment time while he took people who arrived after me. Finally got to see him and asked about the urine leak that he refused to give answers about on the phone. He's like, "What leak?" Are you kidding? The one in the report from the kidney scan you ordered. The test result we are meeting to discuss.

When confronted, his response was that this test isn't accurate and ordered another test. Never told me anything else about the test results or an ultrasound that had also been done. Left the room in less than 5 minutes.

I swear he didn't even look at my chart or test results before he came into the room and was completely unprepared to discuss anything with me.

Had I not gotten the test summary report and read it myself, I wouldn't even know there was a problem with the urine and would have continued to believe the pelvic drainage was only from the small bowel. I doubt he would have followed up at all. It's like we have to become our own doctors. Ridiculous.

Sorry to sidetrack this. Hopefully, you feel less alone in this but just as angry. Appropriate anger can be useful. You go, girl.

Wow, 1 minute before having anesthetic, that is really wrong. How can you trust someone when they keep things from you? I want to trust my surgeon, but really, she kept this from me. How could she not know? She had the scans in front of her. She showed me the incisional hernias; how did she overlook the parastomal hernia?

How do you know what to ask, though? I was so blown away by her telling me I had 3 hernias that I didn't even think to ask about a parastomal hernia. Actually, a year ago I didn't know what one was. So how could I know to ask? She should have explained it to me. If it was not so important at the time, she could have told me that. But the reason for the first scan a year ago was that I was having pain when bending over, and the pain was above my stoma, not in the midline where the three hernias she found were. I can't believe your doctor had to have you lift up your shirt and show him you had a hernia for him to say yes. He should have known. And should have warned you that it isn't just strenuous exercise that causes them. I am in the process of losing weight, and I think that is making my hernia look more pronounced. I am not sure. I was hoping if I lost some weight, it might make things better. Also, my surgeon said that to operate on the three hernias she found, I have to weigh a certain amount. So I have been aiming for that goal. I am so close now, but now I don't want surgery.

Wow, you had an infection so bad you ended up in the hospital, and the doctor still denied you had an infection? That is crazy. How do you deal with a doctor like that? I think doctors have a lot of nerve treating people the way they do. My surgeon is a general surgeon, but she has done all my surgeries, including saving my life. But I really wish she had been upfront with me about the parastomal hernia a year ago. I would feel more prepared now. I know she is going to say let sleeping dogs lie for now because it isn't causing me that much of a problem and only causes pain if I move certain ways (which I try to avoid doing)...but it just would have been nice to know. Honesty is the best policy, right?

I can only get reports of the impressions of the doctor looking at the scan, I can't get the scans themselves. That was how I found out they saw the parastomal hernia a year ago. Because it said on the doctor reading the tests report that it was changed from the previous scan. Meaning, they saw it before. And no one thought to tell me.

I always have to wait at least an hour when I see my surgeon. It's a given. I hate that about it because it is an hour's drive there and then waiting an hour for her and then an hour's drive home. It makes for a long day, especially when I have an afternoon appointment.

I can't believe that your doctor was so unprepared to talk about your case. I hate it when doctors are like that. You would think they could open a chart. And if they ordered the test, then they should know the results and believe the results, not just order more tests. In the meantime, you could get very sick. What is your doctor playing at? And less than 5 minutes is not enough time to spend with a patient.

I am sorry your doctor treated you that way. It's irresponsible and all kinds of wrong.

Hi Susan. I'm sorry you had that treatment with your urologist. Can you find another?

"Appropriate Anger." I like it.

Did you sock it to him? You had a right to do that. Call him out on this test he ordered that was "not accurate." Better yet, call the insurance company. Tell them not to pay for it or get reimbursed. Sick the insurance company on his ass; it will certainly change his attitude.

No. We don't have to become doctors.

We become fierce advocates.

This guy needed a kick.

He basically just walked in and out. He would be replaced in a heartbeat if he treated me that way.

Google reviews count. Add a comment on his review.

When you left his office, making a scene might discourage his patients.

I tolerate zero doctor bullshit.

We are older. We can get away with it. We are not punks. We know our stuff.

This guy just doesn't give a shit. Fudge him. Move on or make it clear to him his behavior needs an adjustment.

You can also report him to the medical profession.

I have good insurance, so I can afford to bounce to another doctor.

So your insurance does factor in seeing specific doctors.

Be your own advocate. You have to.

Get your medical reports.

And if you can see another doctor, do so. Yeah, easy for me to say.

He tosses poop your way? You toss it back!

I drive an hour each way for the appointment so yeah, 3.5 hours out of my day and also my husband's. (Chemo induced peripheral neuropathy keeps me from driving myself.) I think the thing that annoyed me the most about the wait was that people who came in after me were seen first. I was 15 min early for my appointment there was no reason to to take people who arrived 30 min after me first. But I digress... 

I'll defend the ordering of the original test a little in that we weren't looking for a leak with that test. It is intended to show kidney function. But there was an unusual finding that lead to the leak observation.  Nevertheless I highlighted this finding to the doctor's staff and asked that he review it before my appointment.  The response I got was a request for the films (all he had was the report). I sent the films and got told it wouldn't be discussed until my appointment.  Why couldn't he have ordered the additional test without seeing me? I could have been tested and had those results in the 5 weeks I waited for the appointment.  

Meanwhile I have an abcess caused by a small bowel fistula that requires a drain and IV nutrition severely limiting what and how much I can eat by mouth. We are watching drain output as a measure of whether it is healing and urine in the location of that abcess tells me we are wasting my time. Most of the volume is likely urine. 

One thing is for sure, as soon as we resolve these surgical complications I am switching urologists. I will be pressing my colorectal surgeon to do any follow up surgery instead of this guy. 

Sorry to derail your topic. It seems I am hotter about all this than I thought! 

You actually can get a copy of your images. By law, you are allowed to have a copy of everything and anything, from X-rays to MRIs, doctors' notes, hospital notes, surgical notes, etc.

Oh boy, I'm sorry and I think we all can relate to this one so you're definitely not alone. Ditto on the request for your records, to which you have a right. Is a "scan reader" like an online portal with your medical results? My head spins when I read some of mine; I find some results hard to interpret and need to hear them out of the mouth of my actual doctor. I would request to speak to this surgeon when you're calmer, write down all of your questions ahead of time and write down what they say. You might begin by phrasing something like, "I know you're busy and I really appreciate your speaking with me. I need to understand these results so that I don't aggravate this hernia. It would be very helpful to me to be able to break it down, ask questions, etc." I know it sounds a little brown-nose-ish but it's helped me and I think you're more apt to get a productive conversation with the answers you need. And if they start out in the conversation as defensive, you won't.

Your reference to Elaine on Seinfeld is hysterical yet true. Thanks for the chuckle. 

You are so right! How could you have known what questions to ask?  You couldn’t. I didn’t know what a parastomal hernia was either. I just googled “what is this bulge beside my stoma”.  That’s how I found out what it was.  
I am so sorry you are having to navigate all of these issues. Hang in there and know you have friends here who understand your frustrations and challenges and will lend their support and offer encouragement. I personally am so grateful to have found this site.

Since I don't drive, it is also time out of my mom's schedule to take me to the appointments. So I understand what you are saying about it being your husband's time too. I am always 15 minutes early for appointments no matter what time they are or where they are. It is terrible when they tell you to arrive 15 minutes early and then you wait an hour beyond that to be seen.

You are right; you could have done the further testing in the time you were waiting for an appointment to see your doctor. If he had been on top of things, he would have ordered those tests for you to get done before you came in.

That is scary about most of the volume being urine and nobody is doing anything about it? Someone is seriously negligent there.

You are right to switch urologists as soon as you can. You deserve better. Definitely.

I know I can I just don't know how to go about it. I also am not actually going to be able to read the CT, it's not in my educational background. I won't know what I am looking at.

Yeah a year ago I wouldn't have known what to ask to find out I had a parastomal hernia. The only reason I knew about them is from this site. Thank goodness for this site. Otherwise I would still be clueless. If I hadn't though from stuff on here to ask my surgeon about having a hernia, then I would have never had the CT and I would have never known that she should have known about it a year ago. 

I wouldn't worry about getting the images themselves unless you are seeking a second opinion. The images are read and interpreted by a radiologist who produces a short (about 1-2 pages) summary report. Get the summary report. This will tell you what the radiologist is seeing and most doctors rely on this report. You can then ask the doctor about the findings and what they mean for you. I find it much less overwhelming than the images would be.

I suspect the summary reports from the 2 CTs are inconsistent. The incisional hernias seen the first time are not in the second report. The doctor didn't take the time to compare the reports and notice the discrepancy. So you can point it out and ask what it means.

The summary reports give findings in a rather dry and matter-of-fact way. It's the doctor's job to interpret how that information impacts your health. By knowing what was seen, you will know what to ask about.

The one page short summary is where I learned that they knew that I had a parastomal hernia before this scan. I just can't believe that my surgeon didn't know that from the previous scan. I even told her I was having pain when I bent over above my stoma not in my midline. I don't know. I feel confused.