Still in pain but supposedly in remission.

[ktp112]

I'm finally getting over all the Crohn's struggles I've had over the past year and a half, but I'm still having pain. I had a resection surgery a little over a year ago and am currently on Pentasa. Over the holiday I saw my GI doc who ordered a CT scan and colonoscopy to see where the inflammation was at a year after the surgery. The results came up negative and he said that there was no inflammation to be seen. However, I'm still having pain... specifically cramps when I wake up in the morning and occasional sharp, Crohn's-y pains that are happening in a different spot along my GI tract than where the surgery was. I expressed my concern to my doc but he said it was probably something else or was just in my head... Is it possible for me to be having continued problems with my Crohn's despite nothing showing up on the tests? Thanks in advance for your responses!

 

[Jennifer]

Hi ktp112, I'm glad you're doing much better.

Sorry to hear that you're still having pain. There are a few causes that I can think of. One could be increased gas (it is possible for more bacteria to get trapped at your resection site which can produce more gas), can you have your doctor check for bacterial overgrowth (SIBO) by doing a breath test?

Another possibility is that you may be dealing with scar tissue. Even though there's no inflammation scar tissue makes your intestines more narrow which can cause pain when food, drink and even gas pass through.

Lastly, it's possible for inflammation to come and go rather quickly so it's possible that it was minimal to none when you had your CT scan done yet may have returned not long after the test. See if your doctor is willing to check for inflammation in your blood (CRP and ESR) and stool (faecal calprotectin).

Keep us posted.

 

[kristihelene]

I agree, rule out everything Jennifer said! If everything comes back normal, I'll share with you what I just learned at my GI appt. My GI is a leading researcher for IBD. They just completed a study that found that over 50% of crohn's patients who are in endoscopic remission (they score crohn's 0-4; 0-1 is considered endoscopic remission) still have pain, nausea, fatigue, frequency, cramping, etc. So know that should everything continue to come back "normal", know ITS NOT IN YOUR HEAD! Half of us are with you!! The problem is they don't know why our symptoms are still there without the presence of active disease. Good news is there is they are now researching what is causing this and what can be done to treat the pain! Keep advocating for yourself! Know you're not alone! Get answers! But if there aren't any, focus on finding out what you can do to treat the pain. Pain management counseling can help for dealing with the sharp pain; and stress management can help with the more constant pain. Make sure to have good sleep routines, and keep a food diary to see if there's something causing your pain to be worse or better. You can always trial antispasmodics, probiotics, etc to help too!!

 

[Lisa]

My husband was having pains a couple years ago, bad enough they would stop him in his racks and/or even drop him to his knees - he had no history of IBS/IBD ...I talked him into going for a scope (he was due anyway for his age) - and his results were clear...no cause found.....AND they eventually went away. In his case, I think they were largely caused by stress and were his bodys' way of reacting to that.

If you are still having pain with no obvious symptoms, there could be something 'hidden', or you could be having spasms - which would not show on testing I'd think....I do know that phantom pains occur - not sure if that could be a cause too?

 

[SarahBear]

Unfortunately, I still have stomach problems and am considered to be in remission as well. Fortunately, my problems are much less frequent and severe than they were when I was flaring. Most of my symptoms are triggered by food/drink or stress. Might this be true for you, as well?

I do seem to have other conditions that could be contributing to my problems, so please don't take your symptoms to be "normal" because of my response. I would definitely follow the steps in Jennifer's post above.