Fluid pockets causing severe stomach pain - anyone else experienced this?

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1346
royalrosepdx
Nov 12, 2020 7:13 am

I have had some complications with severe stomach pain. I was recently admitted to the hospital for pain control. Imaging shows that there are fluid pockets that press on other organs. I am curious as to if I am the only one that has experienced this issue? I was told at first that it was a gynecology issue and that I have large cysts on my ovaries. The gynecologist says that is not what the other doctors think it is. I was then told that the scar tissue from multiple surgeries provides the "pockets of fluid" because there is no place for the fluid to move and cannot be reabsorbed as it would do with a "normal" person. The way they remove the fluid is with an interventional radiologist, and they aspirate the fluid with insertion of a long needle and suction it out. There has been a liter or more of fluid each time. I have had this 3 times in a year. This last time was the most painful experience in a while. The hospital assigned a gynecologist to oversee my care in the hospital. I have had cysts in the past, and the imaging didn't show a cyst; it was described as pockets of fluid causing massive pressure to my uterus and intestines. Instead of doing a laparoscopy to have a look-see, they tell me I just have to get the fluid removed as needed. If this is not a normal thing for other ileostomy patients and there was no ovarian cyst, then what is happening?

Bill
Nov 12, 2020 8:08 am

Hello royalrose.

Thank you for sharing your situation with us.

I am sorry to hear about your problems and am even more disappointed to say that I haven't a clue as to what might be going on for you. However, I will be following your post with avid interest to see if there are any answers to your questions. 

I hope you get some constructive replies and suggestions.

Best wishes

Bill

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Past Member
Nov 12, 2020 5:24 pm

Hi Rose,

All I know is when they did my surgery I had two drains because the amount of fluid that was used? It took a very long time before it started to stop coming out of the drains.

Maybe a second opinion is in order?

I hope you will get some definite answers soon. Please update us... Mountain

w30bob
Nov 12, 2020 6:16 pm

Hi Royal,

Whoa!... You got a lot going on there, girl! I'm not sure, from the way you describe it, if you're saying you have fluid pockets forming in your stomach... or your intestines. But the red flag for me is when doctors of different specialties can't agree on a cause. That tells me you need another opinion or two. With today's pretty darn good forms of imaging our internals, there's no reason why docs can't agree on what's going on. Obviously, finding a good radiologist is the first step, although many overlook this and assume reading a scan is pretty straightforward. I've found it is NOT. And in radiology, experience matters. So the first thing I'd do is make sure I have the BEST radiologist interpreting the scan results. Don't be afraid to ask for a second opinion from another radiologist. If you poke your doctors enough, they'll tell you who the good radiologists are... and who are not so good. If your docs are satisfied with the radiology report... then bring it to other docs for a second or third opinion. All these docs have preconceived notions about what ails you... and they're looking for things THEY can treat you for. Trust in any doctor has to be earned... not given. There are FAR too many sub-average docs (and even downright hacks) out there, so always get at least a second opinion on something as complicated as what you are describing. I think that the famous Oregonian (Mtnman) is spot on... get another opinion! And keep getting opinions until YOU'RE confident they know what's going on.

Regards,

Bob

Lily17
Nov 13, 2020 12:42 am

Hi, RoyalRose.

I have not heard of this in an ileostomate, but have had my own gynecological issues, including (more benign) cystic ovaries. Unfortunately, I have no experience in a situation such as yours to offer experiential advice. However...

What concerns me is that you don't have consensus between medical professionals. I agree with the others: second, third... fourth?... opinions are needed. See both GIs and Ob-Gyns, along with getting more re-readings of the imaging by experienced radiologists.

Please let us know how your situation progresses. I hope you're able to get more satisfying answers - soon!

Lily17

 
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w30bob
Nov 13, 2020 2:43 am

Yeah... what she said!

;0)

Bob

lovely
Nov 13, 2020 3:26 am

Hey, RoyalRose, sounds like you have been through a lot. I am not an ileostomate, but just wanted to say I hope you can get the right answers soon. I know it has to be very fluctuating. Please let us know how you are doing. Best wishes and stay safe.

Lily17
Nov 13, 2020 4:31 am

Very cool, Bob, as I had initially thought to reply to your initial post, "Yep, what he said!"

"Great minds...!" :)

Lily17

royalrosepdx
Nov 17, 2020 5:07 am

I will have more information after December 10 hopefully. I see my gastroenterology surgeon that did 2 of my 3 surgeries on that day. I have asked for a hospital advocate to help keep the doctors in perspective about this issue. Thanks ostomates for your concern.

w30bob
Nov 17, 2020 6:01 am

Hi Royal,

Before your meeting on the 10th, call those doctors' offices and request a copy of the surgical report each doctor wrote after each of your operations. Doctors are required to document exactly what they did during the operation into a surgical report (for both peer review and insurance purposes) that you have a right to see. Get each report before your meeting and read them. If you don't understand anything, just circle those portions and have each doctor explain those circled portions to you during your meeting. Keep those reports in a secure location in the event you need to have surgery by someone different in the future. Any of your current docs could retire, leave the country, drop dead, etc......and your records would be gone. Even if you can't understand any of what's in the reports, you'll have a hard copy that can be explained to you later. Everyone should have copies of all their operative reports, but few do.

Regards

Bob

PamTX
Sep 11, 2023 4:24 pm

Royalrosepdx, how did this get resolved? I have something similar that is a peritoneal inclusion cyst. It is common for women who have had prior abdominal surgery. They can drain it but it often returns. I am going to an oncologist ob/gyn Dr who is currently monitoring it. It has remained the same for the last 6 months and has not caused me any pain... yet. The only reason they found it was because I was hospitalized for an intestinal blockage last Feb. and this cyst showed up on the CT scan.

krisrox
Mar 12, 2024 11:47 pm

I have had this issue for the past 5+ years. They're called peritoneal inclusion cysts. I had mine surgically removed the first time, and it grew back a year later. I used to get them drained of 2+ liters twice a year, until 2 years ago when the interventional radiologist severed my epigastric artery, which caused me to go into cardiac arrest with severe internal bleeding. Now I have 5 platinum coils in my artery, and I'm lucky to be alive. I get them drained only once a year now because the trauma of that experience still haunts me. Also, my colorectal surgeon said, with every drainage, more scar tissue forms, and then the cyst becomes loculated, creating more cyst pockets which are harder to drain. My next drain is coming up in the next couple of months. I try to wait until I can't bear the discomfort anymore. It's a rare condition, and I've been told that there's no long-term solution at this point other than continuing to get the drainage done through interventional radiology. I hope after all this time you've been able to find the answers you've been looking for. Take care, hun 😉.