MRI indicated no sign of abscess/fistula--what now??

[i_eat_constantly]

Hi All,

About a 1 1/2 months back I was admitted to the hospital for a severe flare and developed a fistula/abscess over a 2-3 day span--an intra-abdominal fistula to be specific.

• I went on liquid only diet, then started TPN (no food or water, JUST TPN).

• I was also put on Ivanz to address the intra-abdominal fistula/abscess and was told there was a small chance I would react to it, but perhaps it would shrink a bit and I could start remicade.

Fast forward a month later and my MRI indicates everything is GONE. Doctors say that it could still reopen though and is likely in the process of healing/closing up.

So my question is, what has been everyone's experience with fistulas/abscesses in the abdomen (mine is in terminal ileum)? Do they stay closed, any odds or probabilities anyone is aware of?

To me this has been a miracle but now I wonder when I go back to real food, will this be reoccurring, or have I beat it so far.

Thanks.

 

[Grumbletum]

Hello there
I had a fistula/abscess from the TI to the bladder. I believe mine healed for a while too on the combination of meds in my signature. I had a clear scope after 3 Infliximab infusions and was kept only on Azathioprine for maintenance. About 6 months after the last infusion, however, it opened up again.
I'm sorry I don't know any exact statistics for them reopening, but I sincerely hope that yours has healed for good.

 

[i_eat_constantly]

Thanks for the response. Did your fistula / abscess open up after a flare or series of flares? While on remicade, did you maintain some kind of diet to control symptoms as well? Did you combine remicade / azathioprine together for your treatment (they are recommending the same for me)?

 

[Grumbletum]

Hi again
I had one major flare and it took about 8 months to get the Crohn's diagnosis as the bladder issues from the fistula are not all that common, but they were there right at the start of the flare. I'd been on Pred and Azathioprine then they added the Remicade to try and get persistant inflammation under control. I had an MRI at that point which showed the abscess had shrunk significantly, but the TI was still very inflamed.
I did feel really good after the infusions and had a lot of but not complete relief from the bladder issues.
I stayed on the SCD diet for quite a while when I was flaring badly. I'd identified by a process of elimination that sugar, caffeine and yeast were my worst triggers and the SCD seemed to fit in with that. It did give me a lot of relief, but when I had the scans, it hadn't done a lot for the inflammation. I have heard of quite a few people having success with TPN.

 

[i_eat_constantly]

Wow, that's interesting, you felt good but the inflammation persisted--this disease is really tough to control.

And really? Could you tell me more about people's success with TPN?

 

[Grumbletum]

You'll find some good discussions on the effectiveness of TPN here.