When does surgery start??

[Datrigga1]

Hi, I'm new to the forum but have been diagnosed with crohns colitis since 2009.

During this time I have been on pentasa which didn't work, azathioprine which made me ill and am currently on Humira.

I have been on Humira for nearly 2 years now but have been going through a flare, all my blood work has come back normal yet a recent colonoscopy showed previous inflammation in my descending colon, a small patch that is active in my sigmoid and a patch that looks like it may start in my transverse colon.

I know the beloved NHS will try medical options first, but at what point would I be looking at surgery??

Any help would be great.

 

[valleysangel92]

Hello, welcome to the forum

The decision to have surgery is one that is unique to everyone, and every gastro and every surgeon will have different opinions on when is the correct point.

In many cases, surgery is deemed to be needed if either medication has failed, the problem cant be fixed with medication (eg. scarring), or the problem could become an emegancy if it is not dealt with quickly (eg. if someone has extensive inflammation that may be close to a rupture)

Sometimes, if someone begins to flare, a simple course of steroids will be enough to get it back under control. There is also the possibility of adding in another medication alongside humira. Pentasa rarely works that well alone, but it may be the small boost you need to keep things at bay if used along with humira. You could also add in mercatopurine (also called 6MP) which is an immuno-suppressant.

If needed, Humira can be upped to once weekly, or you could start on a different biologic, Infliximab is becoming more common in the UK but it is usually reserved for severe cases or cases where other medications have not worked.

If you have scarring, then no medication will deal with it, and then it becomes a choice between can you live with it or not.

I had surgery just 7 months after my diagnosis, my symptoms weren't responding to treatment and there was a worry of becoming steroid dependent as every time they tried to take me off them, my crohns would flare. I was also suffering recurrent obstructions which was a big concern to them.

I would say see what medications are available to you, talk to your gastro and decide how long your willing to give the medications to work (keep in ind that some take a few months to kick in).

I was told that around 75% of crohns patients have surgery at some point.. keep in mind that this is any type of crohns related surgery, including things like draining abscesses. Also keep in mind, that this means around 25% never need surgery for their crohns .

 

[Datrigga1]

Thank you for that valleysangel .

The last time I wad on steroids was for a flare in November and they didn't work. As I was told I have used them too often.

I've got an appt at the end of the month to get the biopsy results. I've been told that the only thing left to try would be 6-MP.

 

[valleysangel92]

Which steroids were you on? The common ones are Prednisolone, but there is another called entocort which might help you, they are more targeted and don't have the long list of side effects that pred does.

Im a little surprised that you havent been given the option of trying a different biologic, but they are expensive medications and we all know how much the NHS is struggling.. do you think they would allow you to try the 6-MP along side the Humira?

 

[Datrigga1]

I have only had Pred.

I did go onto weekly Humira in December and then they put me back to fortnightly until I see the consultant. They can then increase it or stop it.

I've always said to my IBD nurse that it's because of the cost that the docs want me off the humira.