Barbie butt pain

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 woke up having major pain. Probably could be phantom rectum but 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 thru this.  I am new to NC and hit my 90 days at my new job in a couple days for insurance to start. I am ready to go the hospital.

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.🤗

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.

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. 

Thank you for your feedback.  I am only thinking er 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 

You’re welcome. The ER would definitely get you seen sooner for sure but would be added expense with copays, etc, all so 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. 

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 gonna be comfortable for any length of time. 

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 can get cancer once everything is removed and closed up. What can cause the pain, etc.  I mean 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 breath. That thing came on quick and grew quickly. I was in for surgery within 2 wks once figured it out.

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.

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 ER they were able to see I have a hernia so I will need to have that taken care of.

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 realise that they were abscesses until about 5 years ago when I was hospitalised 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 

Hi Cari not sure where you are in NC but I am 4 years since my jpouch surgeries and I live out in Western part but travel 4.5 hrs to go to UNC CHAPEL HILL for my GI I was sent there by my local GI Dr

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 & 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 😊