Understanding and Measuring Parastomal Hernias

Beach Boy, I recently had an abdominal CT scan and the report just stated parastomal hernia but did not indicate the size of the hernia. I see in your post you stated you have a colostomy with a mild parastomal hernia. How did the doctor determine the size of your parastomal hernia?

CT scan revealed I developed a peristomal hernia; my surgeon agreed but offered no further commentary about it.

The "mild" description is from my personal observation. I can flatten the hernia out by wearing a support belt. If I'm performing anything physical, I wear a support belt.

Thank you!

Hello TNMontan,

Hey,

My understanding is that when one lies down, a 'retractable' hernia is able to flatten out. If there is still a significant bulge or a part of your bowel remains "non-flat," then the chances are that surgical intervention may be required. It is also true that where multiple surgeries have occurred, a buildup of scar tissue resulting from each surgical intervention results in increasingly dense adhesions, which by their nature, become difficult to separate, thus putting the bowel in an increasingly vulnerable state.

Also, a hernia is best determined early rather than left untreated and allowed to cause further problems later, unless there are good medical reasons to balance which indicate otherwise.

As regards determining the size, position, and behavior of any herniated part of one's body, this can only be determined in detail via an MRI scan. If such a scan is performed, then the clinician who orders the scan specifies what type, area angles of view, etc., and thus the radiology department staff will submit a full report to your clinician, which, of course, the patient is able to view, coupled with looking at the films/collected footage on screen. This info, with the help of the clinician, may be interpreted so one does understand, through the interpretation of a medic who can accurately 'read' and report (i.e., the radiologist clinician) what may be revealed through scans, i.e., the benefit of informing data to aid understanding.

Also, I humbly observe that size is sometimes not the main issue; more so whether your working of the bowel is compromised and how best to manage the going forward can be the main determinants in my humble experience.

Hope this helps. Guesswork alone, or patient 'self-feeling' alone, will not aid an understanding of size. And if your clinician is not forthcoming, get a second opinion or insist on being shown and understand the data before agreeing to operative or dismissal of a physical need you may have.

Good luck. Don't be bashful in asking questions; most medics will share when they understand you are taking an informed participation in your own healthcare. :-)

[BTW - a CT scan may be informative; an MRI scan can add information not evident through a CT scan alone.]

BW

Jayne

Best wishes

My cat scan revealed the size.

Words of Encouragement from Ostomy Advocates I Hollister

My cat just stared at me

Jayne, thank you for your reply. Just a bit of background on me. My original gastroenterologist, whom I had been seeing for years (colonoscopies and upper GIs), I had recently complained about abdominal pain. He just brushed me off with, "You have complained about your stomach for years!" and then stated he had to get off the phone because he had 40 more people to call with results. Then I ended up in the hospital with severe pain, diverticulitis, and vaginal fistula. I had lost so much weight and was extremely weak. They had to build up my strength for me to even undergo surgery. My surgeon, who did the colostomy surgery and is well-known in his field, said it was the worst case he had seen. He said he was shocked that the biopsies came back negative. He removed the sigmoid colon, a small upper portion of the rectum, and created the stoma. Now, getting back to the Abdominal CT scan. Because of my feelings about my original gastroenterologist, I went to a new group/new doctor. He ordered the CT scan. When I read the report, I called his office to see if he would look at the digital images and tell me the size of the parastomal hernia. His nurse called me and said he said NO and he said for me to just make an appointment with him. We are a 5-hour round trip to his office. Anyway, I said no! He did send me a letter. It stated parastomal hernia - NOTHING TO BE DONE! My original colon surgeon, who also said last August he would not talk to me about reconnecting until a year later, does not do hernia repairs, and his office suggested I see a hernia surgeon. I have an appointment Monday, July 8 - yes, a 5-hour round trip. I have been so VERY disappointed in medical professions since this happened to me last August 2023. I sincerely appreciate your response to me. What is IMH experience? I'm just not medically inclined. I was an IT specialist before retiring.

Was he scanning me?

The hernia would be in the hands of the general surgeon who knows how to fix parastomal hernias. However, now you have to be able to get copies of that scan to that surgeon so he can see exactly what's going on, how big, etc., or they may just order their own. It's better to go to a teaching hospital where all doctors work together and can see everything in your chart no matter which doctor. It saves a lot of headaches trying to get scans over to another outside doctor.

My little weasel scans everyone. Unlike medical CT scanning, her CAT scan looks for one thing... Kibble. Her diagnostic criteria: "EKC" Every Kibble Counts. Utilizing advanced feline vision sensitivity, a speck of kibble on a human registers with her like a peristomal hernia on steroids.

Once during feeding time, a bit of kibble fell and lodged on my shoe. An hour later... there she was... intently staring at me as I lay loafing on the couch. Her advanced olfactory sensors picked up telltale whiffs of... kibble. Summoning up her CAT vision, a quick scan revealed exactly where the wayward kibble lay, hidden by a shoelace.

She advanced... pawed the kibble loose, then joyfully munched the fruits of her labor.

Hello again TNMontan 9721

IMHO/E = In my humble opinion [with a small o, i.e., not a professional opinion] and IMHE means experience [experience of a lay patient, i.e., not professional experience]..

;-) [smiley face with raised eyebrow]

I too, am no medic - thus anything I express can only be from a patient's understanding according to my experience.

That said, like you, IT and Design is my own background - thus NO PROFESSIONAL MEDICAL OPINION IS EVER EXPRESSED BY ME.

I am sorry to learn of your experience - especially from the response from the clinicians who have been dismissive of your inquiries by one-line responses. Clearly, this is not helpful; in fact, in itself such written response is disrespectful and singularly unhelpful..... [although it may be viewed as a shorthand communication between medics - as a sort of rating of urgency/priority]: Clearly, I am not au fait with how the US medical health service works - so far as I understand - in general terms - you guys have health insurance - and as such it would seem to me that any practicing clinician should be aware of DUE DILIGENCE and, whilst may have their own individual protocols in dealing with their business, must surely be rated according to their patient/surgical outcomes and their own professional bodies [i.e., rules as to medics' conduct/procedures/protocols].

Perhaps it may help for you to revert to your General Practitioner [or whatever the equivalent is in the States] i.e., your primary health care professional - who may help and be able to recommend a good hernia surgeon with whom you may consult [i.e., recommend through knowledge of good feedback from other patients] - just a thought.

I wish you well - KEEP ON INSISTING UPON ANSWERS - FEAR OF THE UNKNOWN accounts for so much unnecessary stress - we all deserve courtesy and IMHE it sometimes takes the patient a lot of perseverance to arrive at an informed place from whence one can proceed with confidence.

The bottom line, it seems to me, is: Always BE OPEN in one's THOUGHTS - Think the best and try and forgive the worst - but realistically stand your ground - in the overall scheme of things - it would seem that Gratitude is important - and generally those folk who are not able to respond to genuine care or concern, eventually learn to improve ..... In the meantime, BELIEVE IN YOURSELF and always know that others too have their own challenges which are not always apparent.

Most medics give of their best within the constraints in which they operate and so long as greed or an untenable business model does not rule their Practice then patients will be able to have a balanced confidence in professional ability and care, both of which are paramount in going forward with confidence - for BOTH the Medic AND the Patient.

GOOD LUCK - VIRTUAL HUG

Jayne

Best Wishes from across the pond [ocean] ~ ~ ~ ~ waves from the UK

Jayne