Skip to main content

Hey everyone just curious if anyone has experienced this. I have been experiencing the absolute worse pressure right at my rectum along with the "normal" pouchitis abdominal cramping. It sometimes feels like gas pressure but even when the gas is manipulated out the pain is still there. This has been going on for weeks. I can't stand up strait and deep breaths just seem to add to the pain. My abdomen also feels like it has been majorly stomped. It got so bad about 2 weeks ago that I went to the ER. Which I never do. Nothing crazy showed up on the X-Rays or the MRI. The ER put me on prednisone . I hurt so bad though that I took it. It did absolutely nothing but make me feel crazy. So I was refered to a GI who took me off the prednisone and put me on Cipro. Which I have taken a ton of times. I started to feel a little better on the Cipro. I could stand up strait but thats it. I also got scoped while on the Cipro and they said my pouch looked okay but they took 5 biopsies that I'm waiting to hear on. So I did my cycle of Cipro and within a day of being off it all came back. So in a panic Im taking the Cipro again while I wait to hear from the GI. I'm beyond thankful I don't have the butt burn!! Cause thats the worst!!! But this pain takes my breath away. It takes me minutes to be able to sit during which time I'm having to focus and use breathing exercises to keep it together. I dont eat crap food and have been on a liquid or soft foods diet for over a week. I've lost close to 20 pounds in a matter of weeks. And I dont have 20 pounds to lose. Any ideas on what could be causing this? They said they didn't see any strictures when they did my scope. 

Replies sorted oldest to newest

Boy, with pain like you describe I would be a real squeaky wheel and not let up. No way that this is anything to dismiss. I am not saying that is what you doctor is doing, but sometimes imaging misses things that are serious. I had similar pain and it turned out to be a presacral abscess. However, I did have a low grade fever with it that eventually spiked to 105. That got everyone's attention and an emergency CT found the abscess. Actually by then, the surgeon could feel the abscess behind my pouch via digital exam. It was the size of a grapefruit.

 

Jan

Jan Dollar
Jan,
Thank you gor your response. Im going to ask about this. 2 years ago i had a grapefruit size complex ovation cyst that had to be removed along with my left ovary and tube. The feeling in my lower back is alot like that. I have had a low grade fever and am having a really hard time breathing. My abdomen feels so tight. Like everything is being pulled in. Along with horrible hip pain. Being that the doctors office is closed today i may be in the emergency room tonight and in touch with the dr office tomorrow. But I'm pretty comcerned. Im even taking pain meds to take the edge off. So i have can stand up. I normally dont do the pain med route cause of the consapation issues it can cause. But I'm not in any way having that problem roght npw.

a
S
It may also be good to note i've also been having tons of menstrual issues at the same time. Weird unexplained buildup in my uterus and odd fluid build up. My periods have been lasting around 20 days with maybe 9 days in between. OB has no idea and wants to do a D&C which scares the crap out of me since theres obviously something major going on in my body.
S
I had a similar Experience and it also turned out to be an abscess right above my tailbone.  They didn't find it until they did a CT. I only developed a low grade fever and had to push for them to figure it out. It was painful to put any pressure on it, so sitting was almost out of the question, but if I did have to sit then when I would stand back up the pain was crippling.  Good luck, keep pushing for answers. More often than not we have to be our own advocates.
S

I would not wait until night time to go to the ER If your doctor's office is closed. Go to your primary doc or even OB, or urgent care. I went in around noon for an urgent care visit to the surgeon (had to see the on-call surgeon) and we were up past midnight in interventional radiology dealing with this, and it turned into a 12 day stay.

 

Jan

Jan Dollar
I was able to make it through the night but it was rough!! I was could actually semi comfortably move around then as soon as i got some food in my system i was down for the count. It seems like when my pouch is empty its not as bad. But as soon as it gets anything in it i'm down for hours! Sitting is by far the absolute worse!! Have a call into my GI. Waiting to hear back
S
Biopsy results came back with no malignant areas. So still no resolution. Still in horrible pain. While at a follow up for another issue (another complex ovarian cyst) the OB located a abdominal fluid buildup but stated this is out of her area. Called GI office to inform them of this. I'm supposed to get a call back in the morning. Could and would an abscess cause a fluid buildup? How does it show up on imagining?
S

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×