If Not a Hernia, Then What?

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835
7dragonflies.hm
May 09, 2024 12:46 am

Hey friends,

So here I am, post colostomy reversal (10/23), post ileostomy reversal (2/24), and I have a bulge off to the side of my midline incision scar, opposite the old stoma site. I thought for sure it was a hernia. Got an ultrasound done, per my request, which indicated a hernia. Then the surgeon ordered a CT since that's what they would need if surgery is to follow for repair, and I guess a CT is more reliable for this. Well, the CT said no hernia. So... I'm confused. There's no pain and no bulge when I lay on my back. But when I stand and look down or sideways in the mirror, I can clearly see a bulge. Anyone have any thoughts on this? I have a consultation scheduled with a general surgeon in June for what I thought was going to be hernia repair, but I guess I won't need it if it's not that. I haven't heard anything back yet from the surgeon's office since the CT results came today but was just wondering if anyone had any thoughts to throw my way. I always appreciate you all and hope everyone is doing good. Hugs.

Heather

warrior
May 09, 2024 2:34 am

Access the CT scan info yourself. You have a portal to do this? Make a copy and bring it to the doctor's appointment.

You should not have to wait for that result or report.

It's a mixed blessing maybe if not a hernia. Ultrasound showed it but CT didn't. Very strange.

MRI next? A lot of osties have hernias without pain.

Please be careful deciding what's next. A second opinion might help too.

Good luck. Keep us posted, kiddo.

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7dragonflies.hm
May 09, 2024 11:15 am
Reply to warrior

Thank you, Warrior, for responding to me. Yeah, I pulled up the report yesterday. I don't quite understand, but I'm tired.

Itsme58
May 09, 2024 12:20 pm

Hello, maybe a PET scan should be ordered. Since the doctor and CT scan disagree, a PET scan will show more accurately what might be going on. You didn't say why you had to have an ileostomy or your colostomy. Should you have had cancer, a PET scan will be telling of any cancer that might be going on; it will highlight it. Cancer is drawn to sugar. I had rectal cancer. My cancer kept coming back, so the PET scan showed exactly where the cancer was. Just putting that out there. Hope everything goes well with your appointment.

DexieB
May 09, 2024 1:30 pm

Hi Dragonflies, that is very odd! I am seeing a surgeon in June to assess my new hernia, so please keep us posted on what you find out. IDK what I would think either if I found out this was not a hernia that I have, because I feel like there's no question in my case! Maybe yours is just swelling due to surgery?

I do have to say though that I'm not always fully confident in the CT scans... it did not see my perforation or the sh!t show going on inside of me when I first went to the ER in so much pain I could not stand up. My bloodwork, along with the fact I had just had a flexible sigmoidoscopy, is how my surgeon deduced I had a perforation and he said it was way worse than he thought it would be. So as for me, I do not put 100% of my faith in the CT scans, although I know they can be of great help - I'm sure your care team will look at both the ultrasound and the CT scan and make an informed decision. Maybe an MRI would be better? Let us know if you would. Hugs!

 
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warrior
May 09, 2024 1:46 pm
Reply to 7dragonflies.hm

Well, rest up... read it clear-minded when you have time. 

Just very strange, the conflict in results from ultrasound vs. CAT scan. 

7dragonflies.hm
May 10, 2024 1:23 am
Reply to Itsme58

Hey, it's me. I had a perforated colon and sepsis due to diverticulitis. I had to have a total hysterectomy because of adhesions from the infection and a portion of the sigmoid removed. I got the colostomy at that time, then had that taken down and replaced with a temporary loop ileostomy to allow the new connection to heal. I'm completely reconnected now as of February. I'll keep you posted when I get some answers... sigh.

7dragonflies.hm
May 10, 2024 1:26 am
Reply to DexieB

Hey Dex, yeah... perplexed here. I'm hoping it's just swelling, but something tells me it's been too long for that still. The reversal was at the end of February. I was wondering about you because I remember you said you now have a hernia. Are you sure yours is a hernia? I remember you had the coughing spell shortly after your reversal. Hugs

7dragonflies.hm
May 10, 2024 1:36 am
Reply to warrior

I looked at the U/S report again today and it said "possible" wide mouth hernia, whatever that is, but questionable diastasis. So... I'd already been researching what it could possibly be if not a hernia and stumbled upon something called diastasis recti. It's where the abdominal muscles separate on either side of the linea alba line down the stomach (happens after pregnancy, abdominal surgery, things that alter the integrity of the abdominal wall, etc.). I did the test on myself and think it's a strong possibility. The test being: lay on your back, bend knees with feet on the floor, put fingers on the abdomen below the belly button with fingers together pointing towards the feet. Then lift your head (slightly straining abdominal muscles). If there is about a 2-finger width gap along that line between the abdominal muscles, then it very well could be diastasis recti. Well, I've got the gap. This could also cause the bulge (on both sides). I may be convinced it's that, so I'm going to mention that to see what they say. Apparently, there are exercises, CAREFUL exercises, that can help rebuild, and I'm not sure about surgery to correct. Who knows at this point!!

warrior
May 10, 2024 3:01 am
Reply to 7dragonflies.hm

Wow... you found something. It's a starting point.

What gets me is you are the first to report something like this. Why you? Why now? Hmm.

Is it something we all should be aware of happening to us later on?

I'm just gonna lightly send you a bear hug.

7dragonflies.hm
May 10, 2024 3:08 am
Reply to warrior

Lol, I'd never heard of it myself, but it makes sense. And it is a thing. If you haven't had a chance to or if interested, Google it. Pretty interesting, and if I have stumbled upon something that can help any of us, then I'm elated!

Bear hug accepted and back at ya, Warrior ☺️

warrior
May 10, 2024 3:25 am

Well... I have heard of a big mouth bass fish... a wide track Pontiac... even... "open wide"...

But a wide mouth hernia?

This thing got a mouth? 😆

Going out to dinner as a single. "Party of two, please" 🤔.

Now I'm seeing Pac-Man...

Beachboy
May 10, 2024 9:08 am

I had multiple CT scans. They showed I had an intestinal infection, but not the cause, leading to emergency exploratory surgery that revealed hernia repair mesh, implanted 16 years prior, had migrated around my intestine and bladder. My colon was punctured, causing the unstoppable sepsis infection. Luckily, my bladder was intact. My surgeon was surprised to discover mesh was the cause. So, a CT scan isn't always the best diagnostic imaging tool. An MRI or PET should be considered if a CT doesn't show anything wrong, but you continue to be sick.

7dragonflies.hm
May 10, 2024 11:15 am
Reply to warrior

😂🤣😂 Right! When I read that on the report I was like "wutttttt??" Ok... Pac-Man, I see it too! Thanks for starting my day with a laugh!!

warrior
May 10, 2024 11:26 am
Reply to 7dragonflies.hm

Wa wa wa... blink.

7dragonflies.hm
May 10, 2024 11:26 am
Reply to Beachboy

Egad. Well, that's just terrifying. I didn't know mesh could/would move. I guess anything is possible. I agree on the questionable CT... I had one when I was first diagnosed with diverticulitis but heard no mention of a perforation at that time, not until almost a year later when it almost killed me from the sepsis. Tells me it must've been perforated from the first hospital visit since I never felt right after and continually sick and hurting for the entire year leading up to my stay at Mayo where my world was flipped upside down. The good news here, and knock on wood, but this thing isn't causing me any trouble or pain, other than being unsightly. Maybe they'll order another test for me. I posted a reply to Warrior on this thread about diastasis recti that I'm wondering about. 🤔

7dragonflies.hm
May 10, 2024 11:27 am
Reply to warrior

😅😁

DexieB
May 10, 2024 3:58 pm
Reply to 7dragonflies.hm

Ah yes, I have heard about Diastasis Recti - it can happen after surgeries or childbirth. Yes, I am 99.9% sure I have a hernia - from the coughing fits right after surgery. That telltale bulge along my incision line right in the middle of my stomach, and the way it retracts when I lay down. And if I wear my hernia belt it stays "in," so I do wear it all day but I don't like it. I'm terrified to do much of anything for fear it will get bigger (it's not really that noticeable to others right now, only me), or strangle off my intestines and then I'll need emergency surgery.

I've been very careful and wearing my belt all day, every day, because I hate how it feels when it pops out. I see the surgeon in June so he can shed some light on it hopefully - I'm scared of mesh repair because I have heard how it can migrate. That's the last thing I need! So I'll see what options I have on June 26. I set my appointment way out on purpose so that I'd have more time to heal. I'm probably going to put off any repairs if I choose to have them until closer to the end of the year (unless he says sooner the better)!

Keep us posted!

warrior
May 11, 2024 4:19 am
Reply to DexieB

Hi... I wear a belt 24/7. It attaches to the flange, plus a wrap around to support the bag. The belt does help curb that mound.

You didn't say if you had any pain.

There are several of us with that damn thing, and what we fear most?

The fallout after repair.

Yep, the failure known afterwards.

As long as that belt stays on, I feel I can do anything with no pain too.

Just saying.

DexieB
May 11, 2024 3:07 pm
Reply to warrior

Thanks, Warrior. No pain... just an uncomfortable fullness if it pops out. So I just rely on my belt every day!

I was warned my hernia could return. Funny thing is that it's a new one, not the one I had on my left side under my colostomy. So that was a twist I didn't expect, but I can't say I'm surprised after all the surgeries I have had. My grandma also had an ostomy, not for the same reasons as me, but she also suffered from hernias... so maybe part of it is genetics as well as a weakened abdomen from surgeries.

Guess I will see what the surgeon says about it all in June! Thanks.

7dragonflies.hm
May 11, 2024 4:12 pm
Reply to DexieB

Well, now that's interesting. My consultation is also on June 26th! I am hoping I get somewhere with it. I won't be seeing the surgeon who's done all my previous surgeries, as he's a colorectal surgeon. The upcoming appointment is with a general surgeon at Mayo. But at least he has access to all my stuff there. I'll keep y'all posted, and you please do too. Beachboy mentioned mesh traveling from his years ago, and I've heard of it too. An extremely scary thing for sure. I don't like this for any of us.

DexieB
May 11, 2024 8:49 pm
Reply to 7dragonflies.hm

Wow, what a coincidence! I am also meeting with a surgeon that my colorectal surgeon recommended. Will definitely keep you posted. 😊

amymariefred
May 12, 2024 4:56 pm

I actually am wondering about the same thing. My belly hangs lower than a few weeks ago. It's tender to the touch on the skin and clothes are super uncomfortable. It comes and goes. It's tender to palpation at times too. It's not painful but annoying. I just emailed my surgeon. I'm 8 weeks post-reversal. It disappears when I lay down too. Maybe I'll get an appointment to see her soon. Good luck and keep us posted.

bigskyshi
May 12, 2024 11:05 pm

I recently had a CT scan and it showed I did have not one but two hernias! Only heard about it through the 'Portal'. Don't have an appointment to see the surgeon till June! (Oh, and the doctor's office never called!?)

sallyjackson88
May 13, 2024 10:38 am
Reply to 7dragonflies.hm

Hi, I'm interested to know what you have as I have a 10 cm lump that has grown steadily for the last year, which is located to the left of my stoma. It is interfering with my output. It's definitely not a hernia, but it causes me a lot of discomfort. I've only had my stoma for 15 months. I've had scans, and I am now waiting for a date to remove the lump, but even the consultant doesn't know what it is.

7dragonflies.hm
May 13, 2024 12:09 pm
Reply to sallyjackson88

What kind of scans have you had? What results do they show? I'm interested to know what they will do if they don't know what it is. And if it's interfering with your output, that's not good, like I need to say that, lol. I hope everything works out really well and easily for you. Let us know.

7dragonflies.hm
May 13, 2024 1:13 pm
Reply to bigskyshi

Oh wow! Are they painful? It's crazy no one called to tell you. Where are they located?

7dragonflies.hm
May 13, 2024 1:18 pm
Reply to amymariefred

Ugh... these things. Well, I'm sorry you're struggling with it too. I'm sure they'll order a scan for you to see what's going on, and I hope you can get in soon. It's definitely not fun to be in the dark. Let us know what you find out, and good luck to you too.

DexieB
Jun 24, 2024 2:49 pm

Hello, I had my appointment with the surgeon that my colorectal surgeon recommended for my hernia (turns out he trained my colorectal surgeon, so I don't doubt I am in good hands). He basically confirmed what I already knew—that I have a large hernia, and he's wondering if I have 2 (the one that was fixed under my colostomy during my reversal may also be back). What I was not anticipating was him saying "total abdominal wall reconstruction," "probably open surgery," and "long recovery." Oh, and "large piece of mesh." He said this is his guess, but a CT scan (getting that July 13) will confirm and he will decide then if he can use the robot or not. I am very worried about open surgery and also mesh—he said he puts it between the layers, so it has less of a chance of migrating. Wasn't really able to tell me much more until seeing the CT scan.

I'm just so disheartened right now. I was hoping it would be the quick laparoscopic surgery like I had with the reversal—I healed so much faster. I really can't stand the thought of another major surgery right now—mentally and physically not strong enough.

The hernia doesn't cause pain, only discomfort sometimes—but I'm wondering if it is more due to my recent 10 lb weight gain...I've been going a little crazy after 8 months of not being able to eat much with my ostomy LOL. The hernia hasn't interfered with my bathroom habits at all luckily. He said my type of hernia rarely incarcerates/gets strangled, so I guess that's reassuring. But of course, he thinks I should get this fixed ASAP. I'm just not so sure. I've already missed 5 months of work this past year—this is hard financially, and hard to think about more pain after all I've been through.

I'm inclined right now to lose some weight, and then see how I feel in 3 months. Maybe it's something I can just live with until I feel more ready for another big surgery. So, not the news I was hoping for. Will update more after my CT scan.

 

 

 

Beachboy
Jun 24, 2024 8:51 pm
Reply to DexieB

Sorry to read your hernia update.

My colostomy doesn't bother me... it's the damn peristomal hernia that does. It's always something. A step forward, two steps back.

Praying you get some good news after the CT.