CD suddenly migrated to left lower quadrant

[Mark in Seattle]

For the past 30+ years my CD has always been in my LRQ in my terminal ileum. I've been resected there twice. Now for about a month I've had intense pain in my lower left quadrant, exactly opposite from where I normally have my pain.

I've consulted with a couple gi's locally, and recently had an MRI enterography on a new T3 machine, which showed no inflammation, which totally surprised me. I will be scoped tomorrow, and my GI said he'll try his enteroscope to see if he can go farther than my anastamosis to see if he can visualize any upstream inflammation.

I'm just soliciting advice on how to strategize on this problem. I'm only on a mere 10mg/day prednisone. If I try the hard Asacol pills somehow they really hurt my left side. I know it's raw and swollen, I had some blood in the toilet recently.

Another GI is recommending Humira. I feel like it's urgent that I get onto some other treatment above/beyond pred. Not sure I'm willing to commit to Humira though. The biologics just make me nervous.

I can't seem to tolerate AZA any more, in spite of the fact that I tolerated it years ago. I want to ask my GI to give me 6mp to see if I can tolerate that instead.

I've been advised to have my anastamosis surgically revised due to it's kind of tight and somewhat inflamed. But now with the sudden pain on my left side I'm afraid to let the surgeon venture into me and have him find another couple feet of inflamed small bowel to remove in addition to the couple inches of anastamosis.

I've thought about maybe tyrying the pill cam, and maybe the dummy pill beforehand, assuming tomorrow's scope doesn't reach far enough to see what's going on.

My other concern aside from losing a couple more feet of bowel is potentially having 2 separate anastomitic sites if they take a separate segment out of the left side. That just seems like double trouble living with 2 anastamotic sites.

Any & all comments welcome. This is getting me down thinking about it. Feel like I need an aggressive approach to try to calm it down before it permanently changes the composition of the bowel tissue.

Thanks!

 

[Jennifer]

Scar tissue can cause pain as well if its not inflammation. I've been on 6MP for years (before and after my resection) and have done well on it. What about using Entocort instead of Prednisone along with adding another med like 6MP? I agree that avoiding another surgery by use of medication is a better option (unless things are really bad, we'll just have to see what the tests say). My GI didn't want to put me on Humira just yet because it gets injected straight into your body and there's no filtering like you body can do with the meds you ingest. So I understand why you don't want to go straight for that one. Seems like you're at a point of having to wait and see about the results, possibly more tests and see what your GI thinks will actually work. Sorry if I wasn't more help.

 

[Mark in Seattle]

Thanks Crabby, I've used Entocort in the past. It did not put me into remission, and it helped somewhat with the pain. 9mg of Entocort seems to quell the pain for 12-18 hours. I'm kind of trying to figure out how I might transition from pred to Entocort/6mp. The challenge I have is that everytime I go below 10 mg my pain level becomes pretty unbearable. I don't think it's ok to do both Entocort & pred taper at once. So that's another one to figure out. Thanks for your ideas!

 

[heidit68]

Hi mark, you are correct in assuming not to take Entocort & Prednisone at the same time as they are both steroids. Entocort is not as harsh at prednisone. I currently take Imuran daily & Entocort to control the flares. Has your dr discussed Remicade with you? If the Imuran/Aza discontinues to work for me then that is the next step of meds per my GI at the digestive health specialist for south king county, wa.
I hope you find something that works for you ASAP!
Take care:hang:

 

[Jennifer]

You can take Entocort and Prednisone at the same time. You're usually tapering off of the Prednisone and switching to Entocort or taking them at the same time to get a really bad flare under control which is what I did before my resection.

 

[Mark in Seattle]

Heidi,

Do you mean the place in Tacoma? I see that Klaus Mergener is listed on the roster there. He came to work in Seattle for about a year, and then left. I was surprised. He seemed pretty good.

I've been dealing with a couple of gi's. One is more of a researcher and he advocates the biologics. I have anxiety over meds since my body often reacts negatively to many meds. As such, I inquired about remicade vs. Humira, thinking that any negative reaction might last longer with Remicade since the infusions last longer, and he agreed. He also said that Humira is their top drug with patients now. So in my mind if I decide to do biologics I'll try Humira before Remicade.

The other GI I'm dealing with will scope me tomorrow, with the intent of ruling out colonic (since it's left-sided pain this time) irritation, and see if he can see upstream a bit. He's not quite as gung ho about biologics due to the potential cancer, etc. So I really don't know what he will advocate after the procedure. But this GI is at least familiar with dosing 6mp, whereas the researcher GI only deals in AZA and would not lookup how to dose 6mp for me, and this is the main reason I wanted to see this GI.

 

[Mark in Seattle]

Update - had my scope today. My GI said he was able to use his enteroscope to get 3 to 4 feet above my anastamosis and saw no evidence of inflamaation. My MRI Enterography from just 2 weeks ago showed no inflammation. And yet I have gurgling, all-day squeezing/cramping/pain on my left as though there's a problem on the left. My GI told me today that the pill cam would not fit through my anastamosis due to it being too tight. His recommendation was that I go in for surgery to have my anastamosis revised to make it a little bigger. He said that if there is an inflammatory process on the left, it's more than 4 feet upstream.

Anyone have an opinion on how to proceed? There's still some question in my mind about inflamation perhaps more than 4 feet away from the anastamosis.

Thanks!

 

[Jennifer]

What about a small bowel series with barium or a CT scan? Or does the recent MRI make those tests useless? Is it possible to try Humira before surgery or are you trying to decide between the two?

 

[Mark in Seattle]

I've had too many radiation tests; I'm not going to do any more of them. I doubt a sbs would show inflammation if the MRI didn't.

I'm reluctant to try Humira if I really need a surgery. I'm told that Humira is not good for surgery because you don't heal up as well.

I don't know what the answer is this time. Gonna have to think about this one.

If my anastamosis wasn't so tight, I'd love to do the capsule endoscopy to know for sure what's up.