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Hi all,  I have painful gurgling sounds in my belly, usually between my navel and pubic bone. They do not sound like stomach growling, but more like a quiet draining sound, like when a swirling leaky sound.   The pain afterwards is terrible and lasts at least a couple of days.  Recently, I've had almost colic-like pain in the same area.  Excruciating pain, then a rest, repeat.  That area is very tender to the touch. 

Has anyone experienced anything like this?  Any ideas what it could be.  Just had a CT Enterography 5 weeks ago and it looked "good".  23 year old pouch, Crohn's diagnosis 2012, 2.5 years on Remicade, now on Xifaxin and Pentasa.

Thanks so much.

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I have had the same problems since the day after my takedown 6 months ago. I am going through the same pains you are describing, I have tried everything from eliminating dairy, gluten, & extra sugar, with no results. I have tried Beano, Gas-X and they seem to make things worse, I also avoid carbonated beverages. I am not on medication and am convinced the pains are from UC/Chron's. The biggest relief I have found so far is laying on my stomach and releasing gas, use caution however. Can anyone else give input? I am stuck in the same boat and it is miserable. I do have a small pin-hole sized leak that is healing and being watched, that's the only explanation I have been given related to these pains so far. 

My doctor suspected a leak, I have done nearly endless research on these pains and it all pointed toward a leak. My doctor had me go in for CT scans with contrast that I drank, digested for an hour and then they perform pelvic CT scan. When the leak was first detected, they put me on two strong antibiotics to prevent an internal infection for a few months however now I am just stuck dealing with the leak. It’s a leak at the site of connection. however anytime anything passes by liquid or gas.. I experience these pains. I suggest avoiding coffee, sugars, dairy, maybe gluten... Anything that causes gas, even a piece of candy.. will cause you enormous pain later on (My biggest enemy has been sugar-free anything, any fake sugar causes serious gas). Seriously, try releasing gas laying down.. that has been my only temporary relief! Ginger tea and hot baths can help with this. Also the the less I move around the more I tend to experice these pains, get your body moving. A short walk once a day can help digestion a lot too.

A leak should definitely be ruled out, but the pain may also be due to adhesions.  I have them in the area of the stoma, and I have had partial obstructions in the past. The gurgling noises can be quite loud and every so often, I am aware of stool passing through the area and it is momentarily painful.   For adhesions, surgery is usually only done as a last resort, as any abdominal surgery can lead to more adhesions so you may only end up exacerbating the problem.  I hope you can get it sorted out!

I don’t think a leak should “definitely be ruled out” I would have the CT scan done. What makes you think it should “definitely be ruled out”? I just had a sigmoidoscopy that showed inflammation,  but no adhesions so you are not necessarily correct. Original poster, it could be either or.. maybe even something else. I wouldn’t rule anything out however, leave that to your doctor. 

Hi everyone, I'm the original poster regarding this topic.  Just an update...please stay with me. I've had my pouch since 1995.  There have been a few bumps in the road over the years, the last one was in 2012.  I was sick for months and no one could figure out what was going on.  I crashed one night, so much pain, throwing up, and a 103 fever.  I spent the next 21 days in the hospital with a spontaneous perforation. I was placed on Remicade, lasted just 2 years before developing antibodies.  I didn't start a new biologic and have done fairly well until this summer.  Over the summer, I felt like hell, just unwell.  I had low-grade fevers and my SED rate shot up from 34 to 57.  It dropped to 41, back up to 62, now at 47. The CRP level was also elevated.  By the fall, the fevers abated.   In November I was hospitalized with a partial obstruction.  It was terribly painful, but my pouch still worked during the 5 days, so I thought that was odd.  After that cleared with fluids and med,  I had an MRenterography three weeks ago which showed nothing, no inflammation, no strictures, no obstructions-nothing., basically no active Crohn's. I still don't feel right.  Why in the world is my SED rate 47 and I have tons of pain in my belly and pelvis, also in my lower back.  It's deep, burning pain and lots of gurgling.  My gastro of 25 years just retired last week, so I have a new guy in his office.  My colorectal doc said that SED rates are not that important and that 47 may just be my "new normal".  It ran low 30s for the past 5 years.  I do have lumbar spine issues, arthritis, joint disease, and disk degeneration.  I also had bilateral hip replacements in 2008 and 2012.  I know it's a lot to take in, but it's to the point where I just don't want to go to the doctors anymore because it's exhausting. Everything I experience is real and very tiring.  So sometimes I just feel like doing nothing  which is not a good attitude.  But I'm so tired.  I'm a 500mg Cirpo and 2000 mg of Pentasa daily.  If anyone has the time and interest to help me think this through, I would SO appreciate anything you could do.  Thanks, Happy New Year.

Last edited by Joey A

Joey-

Sed rates alone aren’t very helpful, but your deep, burning pain isn’t normal, and they may well be related. Does the pain always go along with the gurgling? Do you have more gas than before all this started? 

One possibility that comes to mind is that you may be having brief obstructions around an adhesion, which stretch the intestine painfully. Even after they clear things could hurt for a while. This explanation fails to account for your fevers and elevated sed rate, though.

I guess you might have an intermittent leak or fistula that failed to show up on your CT and MR enterographies. That fits the fevers and sed rate elevation better, but can be very tough to pin down.

I hope you can find a doc willing to help you figure this out!

I've gathered all of my records from 1994-present, and it's a BIG pile of papers!  At the University of  Rochester, there is a IBD Center where they will provide you with a second opinion. I would send in my records, and then they review and decide which doc would best suit my needs.   It's only 1.5 hours down the Thruway.  I thought since I've been with the same two docs for 25 years, maybe a new perspective would be a step forward. Do you think it would be a positive thing to pursue?  My gastro just retired last week.  Thanks for your time and Happy New Year.

Joey, you can’t know in advance if it will help, but it’s pretty clear that the current perspective you’re getting is unsatisfactory. Even if the Rochester folks can’t fix you up, just having made the effort can be an important part of the process we go through. In addition to the medical records, I suggest you try to reconstruct your fever and pain history into as clear a timeline/pattern as you can. Good luck!

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