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Crohn's is back!

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Crohn's Disease
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Posted 5/2/2014 4:19 PM (GMT 0)
I had a re-section on March 24th, just 5 weeks ago last Monday. Had some cramping on Tuesday, so a follow up CT scan was recommended. Just got the results - "active crohn's" has returned! Is this possible? Anyone else experience such a dismal failure? BTW 40 cm of small bowel was removed. Surgeon's comment after the surgery was that all of the diseased bowel was removed.

David, aka Mr. Positive
Posted 5/2/2014 4:57 PM (GMT 0)
Welcome to the forum, David. So sorry you've had such a rapid recurrence. It does happen! What is your treatment plan?
Posted 5/2/2014 6:14 PM (GMT 0)
Treatment Plan: I had been on Humira for about five years after the first hospitalization for an obstruction. I had another obstruction in 2012. about 6-8 months ago I began a "flare". Predisone treatment did not help while I continued on the Humira. At the time, my GI made the comment that "the medical treatment program had failed" and that it was time for surgery. After lengthy discussion and some debate I agreed to it - and so here i am, no further ahead and minus 20 inches or so of my intestines.
They are trying to get me into see my GI as soon as possible. A few questions now are - should I go on predisone, start back on Humira, try something different like remicade or cimzia or whatever. Any thoughts?

Thanks in advance for any input!
Posted 5/2/2014 7:03 PM (GMT 0)
Ask your surgeon how he knew for sure he got it all out?  Ask him if he had a pathologist in the OR with him to analyze samples of intestine in realtime as he was cutting so he knew for sure he is getting all the crohns?  I bet you will find out that he did not do this.  That is why you have active disease still left inside you.  Sloppy surgery!!!

Many suregons are arrogant and think they know everything, and they assume that they can  get it all just by looking with thier eyes, or just by cutting out a lot intestine in hopes of getting everything.   In all actuality, there is no way of knowing for sure if you got everything unless there is a pathologist right in the OR that can analyze samples in real  time  so he can tell the surgeon when the sample come back clean and free from disease.  This is the ONLY for the surgeon to really know he has cut it all out.

My cousin had a resection three years ago where they took out 6 inches of illium and the valve, and her surgeon had a pathologist in the OR with him while he was cutting.  The surgeon would cut small portions of intestine upstream and downstream of the diseased intestine and give it to the pathologist to look at.  He did this utill the pathologist found no more active disease.    At that point the surgeon  knew he got everything and closed up.

To this day, my cousin is symptom free of CD . 

Posted 5/2/2014 9:10 PM (GMT 0)
It may be true that the surgeon didn't get clean margins, but I think the rate of recurrence of Crohn's is pretty significant, which is why people with Crohn's are not candidates for J-pouches. It may just be a crap shoot (ha, no pun intended) as to how long a remission you get with surgery. It is certainly worth discussing in great detail with the surgeon.

Since you failed Humira in the end I don't know whether that's an option for you. There are other biologics out there as you noted. I would guess that your disease is refractory to steroid treatment based on what you wrote.

I would also say that you probably needed this surgery just to avoid another obstruction, so let's think of it that way.

You might consider dietary approaches to managing your disease. Have you ever considered SCD or even TPN?
Posted 5/3/2014 1:38 AM (GMT 0)
Crohn's re-occurring 5 weeks after surgery is not unheard of, but supremely unlucky: most people get a few years of relief at least.

There's probably no point in trying Humira again: I'd try Remicade or Cimzia next. Or even Tsyabri, which at least works against something other than TNF (Humira/Remicade/Cimzia are all TNF-blockers).

As for Prednisone, it depends on why it failed. If it was because you had scar tissue, nothing would work for that, including steroids. But if it failed because you are steroid-resistant (some people are), then no amount of taking Pred will ever make it work.

SCD diet might be worth a try, if you can bring yourself to do it: I cannot. Life is miserable enough as it is, but if you're prepared to make the sacrifice, it might help your Crohn's.
Posted 5/3/2014 9:19 AM (GMT 0)
I would recommend Remicade at this point. You might have great success with it, and you should consider it quickly before the active disease starts doing it's damage. If you can get the disease under control, you can avoid having scarring, that would certainly lead to another obstruction.

The success rate with Remicade is the highest of the anti-TNF's we have right now.

It is truly unfortunate that you didn't get a longer remission following surgery. I have a friend that had a resection, and the disease came back within a year, just like what you went through. She had a second resection, removing considerably more small intestine, and has been symptom free without meds for 12 yrs.
Posted 5/3/2014 6:26 PM (GMT 0)
Hi Mr. Positive:

My son had a resection in October 2011. When he had a colonoscopy a year later there were some ulcers at his resection site (terminal ileum). He was put on a 6 months of entocort and his colonoscopy in 2013 was clean. He also takes 6mp and Asacol for maintenance meds.

Hope you can get things under control soon.
Posted 5/4/2014 1:38 AM (GMT 0)
David I'm so sorry. Yes, it does happen but it's really disappointing to go through all that and have this happen. -Joy
Posted 5/4/2014 6:23 AM (GMT 0)
This is exactly what I fear about surgery. When I was diagnosed with UC I at least had hope since I knew they could remove my colon and I'd be cured. Now that it is diagnosed as Crohns I'm like darn surgery is a temporary fix at best. I'll avoid surgery until I really have no choice.  The good news is that new drugs are coming. vedolizumab(similar to tysabri but safer) will be out this year. Xeljanz will be out soon also. Both are different than the usual TNF inhibitors like Humira, Cimzia, Remicade, Simponi.   There is hope I guess
Posted 5/5/2014 7:32 PM (GMT 0)
Very sorry to hear Mr. Positive that the Crohn's has returned so quickly. Others have provided some good advise that I'd follow through on.

scum1, I had a lower bowel resection, not an option and it had been the best thing I've ever done when it comes to relief from the disease. I had an awesome, much needed 15 years or so of relief. No one can be accurate as to why or when the Crohn's disease may return, if ever. Everyone is different when it comes to the disease, so if you decide on the surgery, you may also have long term relief from it. Which I truly hope would be the case.
Best wishes to you both.
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