How do you know if it is scar tissue pain vs. a flare?

[satterae]

Hello! I hope you are all doing well or on the path to recovery!

For about the past year (essentially since giving birth), I have had a dull ache in my RLQ. I have had two colonoscopies (went back for polyps), two CTEs, and an appendectomy (only surgery ever). The appendectomy removed almost all tenderness, but the dull ache remains. The scans show: Stable wall thickening and mucosal hyperenhancement involving the terminal ileum. This and my colonoscopy make my doctor believe I am still in remission. My doctor has put me on a budesonide taper, saying that if it helps, then it is active inflammation, and if it does not help, then it is scar tissue pain. I am a little concerned because some people don't really respond to budesonide I have read, and this seems not ideal for making serious treatment decisions.

I worry that:

1. If it is actually inflammation and we just follow pain management as she has suggested for scar tissue, the disease will progress.
2. If it is just scar tissue and we add azathioprine to my current Remicade (due to past fistula in TI, doesn't want me to go off Remicade), I am putting myself at increased cancer risks when unnecessary since that would not treat scar tissue.

So I am wondering, what does scar tissue feel like for you, and how did you get it diagnosed? Thank you for your thoughts!

 

[Lisa]

I had my appendix out years ago (1990's) and still get some pain if I move the wrong way - it feels like a pulling sensation most times. I also sometimes have an ache, especially after the pulling sensation/pain.

As far as flare - for me, I would get more of a cramping sensation/pain that would go along with eating and food moving through my intestines.....not a pain on a specific movement.

 

[Scipio]

I had my appendix out years ago (1990's) and still get some pain if I move the wrong way - it feels like a pulling sensation most times. I also sometimes have an ache, especially after the pulling sensation/pain.

A dull ache with a pulling sensation near the site of prior abdominal surgery is very likely an adhesion. I have adhesions on my left side that developed after an emergency splenectomy (long story) back in 2002. To this day I cannot sleep or even briefly lay on my left side without triggering nonstop aching/pulling sensation. Docs will not normally attempt to surgically remove adhesions because they almost always grow right back - often worse than before.

 

[satterae]

Thank you for your response @Lisa ! I really appreciate your description. This pain seems uncorrelated to anything, as far as I can tell. I have tried tracking just about everything I can think of. This is a dull ache (no pulling sensation) that will last for about a day, go away for about 1-2 days, only to return again for another day. It doesn't really seem to be responding after just finishing one month of budesonide, so I think my GI will say it is scar tissue. I still am skeptical it is scar tissue and wondering if testing for Remicade antibodies/trough levels might give a little more clarity.

 

[my little penguin]

Can you get an MRE instead /pill cam ?

 

[satterae]

Unfortunately, @mylittlepenguin, I am waiting for a GI clip to pass from a colonoscopy several months ago. It just keeps hanging around. I was hoping to get an MRI, but they had to switch it to a CT with enterography due to the clip. I have not asked about a pill cam, but perhaps I should do that. Thanks for the suggestion.

 

[Barbermb]

Hello! I hope you are all doing well or on the path to recovery!

For about the past year (essentially since giving birth), I have had a dull ache in my RLQ. I have had two colonoscopies (went back for polyps), two CTEs, and an appendectomy (only surgery ever). The appendectomy removed almost all tenderness, but the dull ache remains. The scans show: Stable wall thickening and mucosal hyperenhancement involving the terminal ileum. This and my colonoscopy make my doctor believe I am still in remission. My doctor has put me on a budesonide taper, saying that if it helps, then it is active inflammation, and if it does not help, then it is scar tissue pain. I am a little concerned because some people don't really respond to budesonide I have read, and this seems not ideal for making serious treatment decisions.

I worry that:

1. If it is actually inflammation and we just follow pain management as she has suggested for scar tissue, the disease will progress.
2. If it is just scar tissue and we add azathioprine to my current Remicade (due to past fistula in TI, doesn't want me to go off Remicade), I am putting myself at increased cancer risks when unnecessary since that would not treat scar tissue.

So I am wondering, what does scar tissue feel like for you, and how did you get it diagnosed? Thank you for your thoughts!

I have crohns and got diagnosed about 6 years ago, starting with a stricture in my small intestine and colon. It felt like constant pressure and burning when I ate or drank, until I could anymore. I stayed nauseous because my food stopped passing through, until I had to have surgery. Stay on your drs, if they don’t give you the answers you need then find another opinion. I’m not sure where you live, but Vanderbilt in Nashville is where my GI dr is and I’m so glad I found her. Azathioprine is to stop your body from being immune to the medication and should be given before you start. My last dr gave it to me after my medicine was already not helping me and Nashville even admitted they shouldn’t have done it in that order. I hope this helps!