Are you currently on meds after surgery

[bandbmom]

My son had a terminal ileum resetion on March 21. He has done really well since the surgery and is feeling much better. His doctor told us in the hospital that he wouldn't be on any medicine now. He plans on doing a colonoscophy in six months and if there is any evidence of Crohns at that time he will start some form of therapy. Should I be concerned about this, or is this a normal course of action after surgery? Of course I want his remission to last as long as possible. But, on the other hand I don't want him to be taking a lot of medicines for nothing. Sometimes the medicines scare me as much as the disease. I just wondered what other doctors do in this situation. Thanks!

 

[nogutsnoglory]

I think it's pretty typical to wait a while after surgery before starting any new medication to give the body adequate time to fully heal. As to whether he needs to go back on medication, I think he will likely need maintenance therapy but just observe symptoms and do that scope at 6 months to make that determination. Certainly if there is no active disease there is no reason to take these very taxing medications.

 

[alex_chris]

I think it's pretty typical to wait a while after surgery before starting any new medication to give the body adequate time to fully heal. As to whether he needs to go back on medication, I think he will likely need maintenance therapy but just observe symptoms and do that scope at 6 months to make that determination. Certainly if there is no active disease there is no reason to take these very taxing medications.

Actually there are two schools of thought.

If you had inflammation before surgery, surgery itself might cut away the most effected parts, but the place where bowel parts are removed and patched together are of course inflamed post surgery. I had a discussion with my GI back in 2003 when I had surgery and he explained to me that he immediately puts his patients on aza or 6mp after surgery to preempt any inflammation coming up linked to the surgery.

I always thought the reasoning for going on immunosuppressives right away made sense. Specifically because aza/6mp were originally designed to keep inflammation/adverse immune system reactions in check post-surgery, e.g. for organ transplantations.

 

[Clash]

bandmom, I'm going to tag Mehita and hopefully it will bring her by. I think her son just had surgery and they were supposed to wait as well but I think the inflammation has returned and they are now starting a short course of pred and AZA, so she might have insight on your questions.

 

[Mehita]

Unfortunately, we waited and it was a mistake.

My son had a resection in January. It was the only area of active Crohn's and everything else was clean so his GI said he wanted to wait until 6 months post-op to do scopes and see how things are going. One month after surgery he had the best labs ever... no inflammation and all the numbers were good, so we decided to just keep him on Pentasa and would discuss maintenance meds again in the summer at the 6 month mark.

In April he caught a cold. It triggered something and he went downhill pretty quickly. Within two weeks he was in a full blown flare and miserable. We just had scopes yesterday which confirmed his horrible lab numbers and he's starting a short course of pred along with Azathiopurine today. So, in total, we made it 3 months before the monster was back.

At the time we really were thinking his Crohn's was of the mild variety and we would be okay waiting 6 months. As alex_chris said, there seems to be two schools of thought on this. DS did not have inflammation prior to surgery so we took the conservative approach, but it backfired on us.

In retrospect what would we have changed? Probably nothing. We really had no reason to and like you, the meds scared me. Maybe request monthly labs to check for inflammation until the 6 month mark, just to be on the safe side? Maybe have scopes at 3 months versus 6 months? Really, there is no harm in that, right?

Here are some links that you might find useful:
http://www.wjgnet.com/1007-9327/11/3971.pdf
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773309/
http://www.medpagetoday.com/Gastroenterology/InflammatoryBowelDisease/12695
http://www.practicalgastro.com/pdf/May11/CollinsArticle.pdf

It's just such a crazy disease. My new motto? Expect the unexpected! Keep us posted.

 

[Scaryman]

My son had a terminal ileum resetion on March 21. He has done really well since the surgery and is feeling much better. His doctor told us in the hospital that he wouldn't be on any medicine now. He plans on doing a colonoscophy in six months and if there is any evidence of Crohns at that time he will start some form of therapy. Should I be concerned about this, or is this a normal course of action after surgery? Of course I want his remission to last as long as possible. But, on the other hand I don't want him to be taking a lot of medicines for nothing. Sometimes the medicines scare me as much as the disease. I just wondered what other doctors do in this situation. Thanks!

I thought ALL crohns patients need one form of medicinal therapy post surgery as it 90% of the time it comes back to the surgery site. Least I was told that by a leading Crohn's expert as well as a parent who has our lovely disease.

 

[bandbmom]

We had the colonoscopy done last week and there was microscopic evidence of the Crohn's coming back. So, his doctor wants to put him on Cimzia or Humira. We found that out yesterday (on his birthday) and he left today for college - wonderful timing! So, on his way to college with his car packed full, he had to go to the doctor's office and get a chest xray and blood work. And, tomorrow he gets to find the Health Center at school and have a TB test done. :stinks:

 

[DustyKat]

Hey bandbmom,

Sarah was undiagnosed at the time of her surgery and had never seen a GI. So about two weeks post op the GP made contact with a GI and she was started on her maintenance medication after consulting the GI over the phone.

Matt remained on the Imuran post op just as he had been taking pre op.

With my kids they were deemed to have moderate - severe disease and although surgery put them immediately into remission there was a general consensus amongst all doctors seen that the aim of long term post op care was to do everything to maintain that state of remission and so prevent not only a return of inflammation but the need for any further surgery full stop.

So sorry to hear that he has inflammation present mum but catching it early will hopefully provide him with a very good outcome. Good luck!

Dusty. xxx

 

[Jessy]

I will be having the same surgery in mid September and the plan is to start on Cimzia shortly after the surgery. I think it is best to be on some maintenance drug following surgery since surgery isn't actually a cure and in more cases than not the Crohn's returns - usually right at the surgery site. I will also be starting the SCD Diet in hoper to maintain a long remission.

I can also see your reservation and desire to keep your son off meds. One thing you can do is be diligent in monitoring his progress and remission, that way you can jump into medication at the first sight of a flare. Good luck!

 

[annawato]

I think post op maintenance meds are essential. Ops only heal for awhile. The latest thinking among GI's is to put patients on biologics as early as possible to stop crohn's causing more and more damage in the bowel. I guess cost is the only thing for them to consider but in the long run it may be cheaper for the health system than repeated ops and failure of other meds.

 

[alex_chris]

I think post op maintenance meds are essential. Ops only heal for awhile. The latest thinking among GI's is to put patients on biologics as early as possible to stop crohn's causing more and more damage in the bowel. I guess cost is the only thing for them to consider but in the long run it may be cheaper for the health system than repeated ops and failure of other meds.

True. The thinking in the last 15 years or so has been to put people on maintenance meds from day one after surgery. I started with aza right away. Considering aza is designed for the very purpose of post surgery inflammation control (in organ transplantations) that also makes a lot of sense. A surgery always leads to inflammation at the part of the intestine where you are operated on.

 

[bandbmom]

Have any of you on Cimzia or Humira had any trouble with infections? My son has lots of sinus infections already, so that also scares me.

 

[annawato]

I had no trouble with infections whilst on humira or remicade,. I have been on prednisone for a long while and that would add to the risk of infection.
Your son may be prone to sinus infections because his body is busy fighting the crohn's.
But then I'm not a doctor so thats just conjecture.
I hope all is going well for now anyway,
:heart: anna