Medications Post Surgery Did it change for you?

[SupportiveMom]

My 14 yr old just had ileostomy surgery Wednesday (July 15). GI is saying now that her colon is gone, and there has been no active disease in small bowel in 2 years she will be slowly tapering off meds one by one until she is completely off medications completely.

Anyone have this experience? If so how did it go? I am a bit scared no drugs will mean disease will come back.

 

[Susan2]

There seem to be differing opinions on this.

I was on Prednisolone before my proctocolectomy and ileostomy surgery in 2000 but tapered off it after the operation and have been on no meds at all since - 15 years. I have had no recurrence of active disease but it is important to understand that the Crohn's does not disappear and there is always the possibility of it flaring up again. It is important, therefore, to have your daughter's GI or GP keep an eye on it and to learn to recognise what symptoms to watch out for.

I have very thorough blood tests annually because it is easy for someone with no colon to experience some deficiencies in essential vitamins, minerals, etc.

How is your daughter coping with her ileostomy? There is a teenage section of this Forum that is private. She might like to join and talk to others in the same situation.

Wishing your daughter all the best .

 

[DJW]

I was off meds for 20 year (remission) after my ileostomy surgery. Only because of my fed up level with Crohn's was so high.

I did get lost of adhesions requiring surgery in that time.
About 2.5-3 years ago it was back. I'm on Remicade and imuran.

If the doc is discontinuing meds I'd request annual scopes and regular blood work.
But that is just my opinion.

Sending you both my support.

 

[Clash]

C's GI said with adults most GIs wait 6 mos after surgery, scope and then decide if medication is warranted, with kids (and CD) the disease tends to be aggressive and that meds are generally warranted after surgery.

After my son's ileocecectomy he went back to Remicade a few doses in he had reactions and high antibodies levels so we switched to humira. He was on mtx this whole time but since the Remicade wasn't working Due to antibodies and it took a month to get humira set up he basically was not medicated by biologics for the first 5 months after surgery.

A scope at 8 mos showed what looked to be pristine intestine in all areas including surgical site. Biopsies told a different story, he had active disease at the surgical site and a bit further up. He will have to ha e another scope in late October early November to see if perhaps humira has caught up and taken care of the cellular level inflammation. If not then we will have to make more changes, I'm sure.

 

[hawkeye]

I cut and pasted this from the other thread -

I've been off medication since my resection February 2014, there was no tapering, the surgeon said to stop the medication. There was a bit of a wait and see approach with the GI until the scope this past November, but with the clear scope he kept me off medication. I didn't have any (or maybe recent - don't really know where things were initially and I don't have access to my original file) activity in the small bowel.

 

[SupportiveMom]

Feeling a bit better that this might be the normal path if treatment. Now it look like I will have 2 extra Simponi dosages. Gonna hold off for a month before asking around to see if someone wants them. $3,000 is a lot of money to throw away!

 

[DustyKat]

My personal opinion: I think most would agree that Crohns is not curable at this point in time and therefore the aim is to gain remission and stay there for the optimum period of time. Resection surgery, for most, will put you straight into remission but I view Crohns as a disease that is lurking and waiting to strike when the time is right so if I can regulate that response to some extent then that's what I will do. I see any maintenance medication as a preventative much like Pulmicort is for an asthmatic, it stabilises your underlying condition so hopefully you can avoid or at least lessen the occurrence of a full on attack.

If this was the surgeon making this recommendation to you then I would say go to your GI for their opinion, but since it is your GI I would hold more stock with their opinion. That said I agree with what both DJW and Clash have said. If you decide to stay off meds then ensure that vigilant monitoring is done but I would still be ansty about not being on meds due to the more aggressive nature of Crohn’s in younger onset patients and your daughter’s disease fits this aggressive profile due to the early interventions that have been required. :ghug:

It is never an easy decision to make. You would think not being on meds would be a no brainer and something we would grasp with both hands…if only it was that easy!

Dusty. xxx

 

[SupportiveMom]

Thanks dusty. I never heard nor asked what happens posy surgery to treatment. I was blindsided by this revelation. Three years with this battle. The last thing I want is to relive these years again. I wish there was easy clear answers with this. I'm sure being off the meds would help with whatever is left in her growth & remaining health. But I have seen crohns cripple her where she can't leave the house for days. If there is anything I can do to avoid that again I will do it in a heartbeat.

 

[DustyKat]

I hear you loud and clear SupportiveMom. :ghug::ghug::ghug:

While ever there isn’t steroids in the mix I think you will find that maintenance meds nor no the surgery should provide her with a very good basis to now grow and develop. This is what happened with my daughter but in our case it did take a good 6-9 months post resection for Sarah’s body to get over the damage the Crohn’s had done, she was severely underweight, and for her body to adjust and start the growing process.

I would ask the GI the following before making any decisions:

Why are you of the opinion that maintenance medication is not required following surgery given my daughter has Crohn’s and not UC?
Although I understand that the diseased bowel has been removed what are your plans to maximise my daughter’s chances of maintaining remission?
How are you going to monitor her progress and how often?
At what point would you consider reintroducing medication?

Dusty. xxx

 

[Mr chicken]

I would ask how the Gi knows the lack of disease progression in the small Bowel was NOT due to the meds keeping it under control ....
The colon inflammation could have been the extreme and the small bowel was "ok " as long as there were meds

Any Gi will tell you the severity of the disease can vary through out the intestine ...