Post surgery maintenance meds

[nogutsnoglory]

Has your GI always put you on post surgery maintenance meds if they cleared out all diseased bowel?

I'm scared either way. I don't want to take this potentially dangerous immunosuppressant medication but I also don't want to get back to the place I was and risk losing another inch of intestine.

Thoughts?

 

[tiloah]

My GI put me on no maintenance meds post surgery. I have a follow up colonoscopy in a couple of days (exactly six months out from op) to determine my future course of treatment. If there's inflammation we will restart meds, if not we won't. Honestly I feel like since surgery doesn't cure Crohn's you should always be on maintenance meds. If they don't find inflammation I'm not sure what my next move will be.

 

[nogutsnoglory]

I'm leaning towards doing the colonoscopy to see where I'm at too.

 

[DustyKat]

This is part of what I wrote in a thread last year...

Now this is where my personal beliefs come into play, and I say that simply because not everyone has the same opinion as I do. 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. Sarah's surgery put her straight into remission and she has stayed there 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 Imuran as a preventative medication 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 asthmatic attack.

Another point I think worth mentioning is while ever Sarah has Imuran in her system then should the need arise to increase the dose she does not have the waiting period for the medication to start taking effect.

Since then my son has been diagnosed and has also had surgery, in April. He is also on Imuran as a maintenance medication and is solidly in remission.

I hate that my children take these drugs every day of their lives but like you I also don't wish to revisit those dark days I went through with my daughter 5 years ago, we came within a whiskers breadth of losing her.

Dusty. xxx

 

[tiloah]

My GI told me they used to wait after surgery until somebody had symptoms again, at which point it was almost always too late. I would definitely at least recommend a f/u colonoscopy.

 

[tiloah]

As far as the strength of the meds and side effects are concerned, I am far more concerned about the effects of this real disease that it is KNOWN that I have than some extremely low chance of a drug harming me. Out of control inflammation is known to cause cancer (and probably at higher rates). This is how I feel about it.

 

[Grant]

Its looking likely that I will have to have another stricture removed & last week I said to my specialist that due to the disease coming back quickly(within weeks) after my last two surgeries I would really like something very soon after surgery as prevention otherwise I feel & fear I'd just be in the same position again in 12 mths time. He agreed & aims to keep me on Humira fortnightly right the way through-suits me down to the ground.
Surgeons in particular have a "your cured" attitude, which is a tad daft.
Regards
Grant

 

[nogutsnoglory]

As far as the strength of the meds and side effects are concerned, I am far more concerned about the effects of this real disease that it is KNOWN that I have than some extremely low chance of a drug harming me. Out of control inflammation is known to cause cancer (and probably at higher rates). This is how I feel about it.

It's a good point! I guess I'm also concerned about picking up any random germs. I got shingles a few months ago and totally attribute it to my weak immune system. But as far as cancer it looks like we are likely damned either way.

 

[tiloah]

It's a good point! I guess I'm also concerned about picking up any random germs. I got shingles a few months ago and totally attribute it to my weak immune system. But as far as cancer it looks like we are likely damned either way.

Oh I'm sorry you had shingles! That is so awful. My sister had shingles while she was in college from the stress.

Were you on an immunosupressant at the time?

 

[tiloah]

Its looking likely that I will have to have another stricture removed & last week I said to my specialist that due to the disease coming back quickly(within weeks) after my last two surgeries I would really like something very soon after surgery as prevention otherwise I feel & fear I'd just be in the same position again in 12 mths time. He agreed & aims to keep me on Humira fortnightly right the way through-suits me down to the ground.
Surgeons in particular have a "your cured" attitude, which is a tad daft.
Regards
Grant

Yes! Surgeons definitely have that attitude. I think it's because they have been trained to "you take it out, and it's all better." Also in six months when you get sick again, they have no idea because you go back and see your GI, not them. They live their life happily thinking they've "fixed" their patients until you're back scheduling another procedure. Hehe. My surgeon mentioned I might be cured and I was all "Hmm, wouldn't that be nice."

 

[scl]

My GI and surgeon both recommend that I go off all meds after my recent surgery where they removed a small portion of bowel and repaired an ileosigmoid fistula, but every case is different. The reason for their suggestion is that I have had mild symptoms (only chronic diarrhea) for 30 years and it wasn't until earlier this year that I was diagnosed when suffering a blockage.

The docs think I am a "slow cooker" as far as inflammation goes. They think I might go another 30 years (by that time I will be 84 years old!) before running into trouble.

I will have a colonoscopy 6 months from surgery. If that is clear, I will have another a year later. Eventually, it might be every two years. They said they can find microscopic signs of inflammation with colonoscopy, long, long before symptoms appear.

I'm comfortable with that and I would like to avoid drug side effects. I have always eaten a very healthy diet, but will adjust it to better control inflammation.

I think these choices come down to age, severity of disease, past surgeries, etc. Good luck to everyone in making the best choice for your unique situation.

 

[nogutsnoglory]

Oh I'm sorry you had shingles! That is so awful. My sister had shingles while she was in college from the stress.

Were you on an immunosupressant at the time?

Yes I was on 6mp at the time. Shingles stinks! I am seeing my GI today he probably will recommend I take 6mp or a biologic I don't know what to do ahhh.

 

[tiloah]

Well I hope whatever you and your GI decide, it works well for you. Remember your doctor can't prescribe you a drug without your consent. Also, whatever decision you make doesn't have to be permanent. If you try a drug and it doesn't work out you can always stop taking it. If you try going med free you can always start taking something.

Good luck!

 

[stickman7755]

Im on Imuran after surgery. Like most sane people, I would prefer not to be on any drugs, but the side effects are nothing compared to what you have to go through during a flare and I would like to prevent another surgery as long as possible.