Barbie Butt Pain - Need Advice ASAP!

Aug 30, 2022 10:47 am

Hello all. I am just under three years past surgery where I went from a J-pouch to ileostomy and Barbie butt. Just two days ago, I woke up having major pain. It probably could be phantom rectum, but I also get pain in the lower back and some lower abdomen burning. I have had no issues here since 3 months after surgery where I became septic due to a hair in the closure causing a tiny hole. It hurts to sit, lay, walk. Feels like a lot of pressure just sitting there. Does anyone have any thoughts or have gone through this? I am new to NC and will hit my 90 days at my new job in a couple of days for insurance to start. I am ready to go to the hospital.

Aug 30, 2022 11:56 am

Hi Cari, it doesn't sound like phantom pain to me because it's covering a larger area. You said you're new to NC; do you have a GI there? Do you have any other symptoms? Fever? Maybe it's something that a round of antibiotics knocks out. At least get it checked out the day your insurance kicks in. You don't want it to become an emergency situation. Let us know how you do.

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Aug 30, 2022 12:29 pm

No GI yet, was waiting for the insurance as I am due for my biyearly endoscopy this year. No fever, some ostomy pain when bowel movement but not every time. And slight nausea after eating. I sit in a wonderfully uncomfortable office chair pretty much all day so needing a quick answer, why thinking ER.
Thank you for your feedback.

Aug 30, 2022 3:20 pm

I'm no medical professional but it sounds like too much pain to me, especially after having surgery quite awhile ago. I'd go see a doctor asap. Not sure an ER is the place as most there are not specific to what you probably need, GI and/or ostomy specialist.

Aug 30, 2022 3:26 pm
Reply to AlexT

Thank you for your feedback. I am only thinking of it as it would get me in quicker due to not having a GI yet. I am checking into GI's now and if my insurance is active yet. Thanks so much.

Living with Your Ostomy | Hollister
Aug 30, 2022 3:53 pm
Reply to cari.eaton1975

You're welcome. The ER would definitely get you seen sooner for sure, but it would be added expense with copays, etc. Also, they would probably refer you to a specialist anyway. You've had your ostomy long enough to know something isn't right with whatever your normal is. I'd call your primary care doctor, if you have one, and go to them first or ask them to refer you to a specialist. If you don't have a primary yet, I'd simply call a specialist. No need to have to go to multiple places to end up going to a specialist anyway.

Aug 30, 2022 4:00 pm

And I'd find a different chair to sit in at work or add a cushion or something (stand-up desk). I can tell in about 10 seconds when I sit down if what I'm sitting on is going to be comfortable for any length of time.

Aug 30, 2022 5:49 pm

Thanks for the advice. I added a cushion yesterday. One I still had from when I had my surgery.

Besides just normal ostomy issues, I have not had any issues until Sunday morning. I tried doing searches if I can get cancer once everything is removed and closed up. What can cause the pain, etc. I mean I just didn't want to blow it off but didn't want to freak out over nothing either. I am not a big one for going to the doctor if I don't need to.
I ended up with a desmoid tumor in my neck/throat and literally just woke up one morning not able to swallow which caused me to panic as I felt like I could not breathe. That thing came on quick and grew quickly. I was in for surgery within 2 weeks once figured it out.

Little Stinker
Aug 30, 2022 6:10 pm

Cari, that would worry me too. Regardless of what you decide, you may want to line up a GP and a GI doc and get acquainted once the insurance kicks in. Best of luck.

Sep 01, 2022 2:28 pm

Just wanted to give an update. Went to the ER and they believe it's an abscess. The doctor they referred me to doesn't think so but he is referring me to a GI doc so that is good. Taking an antibiotic and some pain medicine. But by going in to the ER, they were able to see I have a hernia so I will need to have that taken care of.

Sep 05, 2022 3:36 am

Hi Cari,

I just saw your messages and my first thought was an abscess. I have had a few abscesses since my surgery back in 2007. I didn't realize that they were abscesses until about 5 years ago when I was hospitalized due to severe abdominal and butt pain. I couldn't sit or stand without ending up in tears. Found out that I had a 6cm x 3cm x 2.5cm abscess in my abdomen. This required drainage in the OT. 3 months later I was back in hospital with another one. I ended up being referred from my small country town hospital in Victoria, Australia to one of the larger hospitals in Melbourne, Victoria.
I hope that you don't end up like me with complication after complication which has resulted in the specialists being unable to do anything further for me and I am now unable to work again.
I wish you the very best of luck and hope you get better soon

Sep 06, 2022 12:19 am

Hi Cari, not sure where you are in NC, but I am 4 years since my J-pouch surgeries and I live out in the western part. But I travel 4.5 hrs to go to UNC Chapel Hill for my GI. I was sent there by my local GI Dr.

Oct 12, 2022 3:52 am

Hi Cari,

I have the same problem. Quite a heavy painful feeling in the butt pelvis, like a heavy period pain and sometimes as bad as labour. My GI ordered a CT scan and it turns out that I have quite a large seroma in my abdomen. This is a fluid-filled sac that my body has made to compensate for having so many organs removed (basically to fill up the empty spaces!)

When it becomes too painful, I have it drained.

Hope this helps you.