What is Right and What is Wrong??!?

[MiissKriisty]

Hi, my name is Kristy, I'm 25 years old and was diagnosed with Crohn's 12mnths ago, after 18months of tests tests and more tests. It is now believed that I may have been wrongly diagnosed at 16, as I have suffered from seizures, any many other inflammations that all tie back to crohns. Since being diagnosed I have have several surgeries for a perianal fistula, that doesnt seem to want to close up :ymad: I suffer daily from severe fatigue, anxiety, and sometimes depression, but my hardest battle is not knowing what is right and wrong?!?!?

I have been struggling to be 'okay' with the medication my specialist has prescribed (mecaptopurine), knowing some of the side effects they can have. My doctor is now looking to put me on either Humira or Remicade, due to the ongoing issues with the fistula, but these both seem to have worse side effects?.. I don't have a very good relationship with my specialist as he doesn't seem to be bothered with how I feel about any of it.

I've also recently looked at naturopaths, who have suggested that I can live a healthy life, not being on any of these drugs, but by sticking to a strict diet, as well as some suggested supplements from the natropath.

I guess what I am here for is to ask if there is anybody out there that is living drug free with this disease, and suggestion or recommendation on whether I would have better success of the fistula closing up if I was to start Humira or Remicade.

Thanks in advance

Cheers
Kristy

 

[Orchid]

The side effect list is possibilities, not guarantees. A lot of people here get their lives back when they start biologic therapy with nothing more than minor side effects. I'm on one myself, a medication called Cimzia. I inject it once a month and I have a minor injection site reaction, it gets red, swells a little, and I run a low fever for two or three days. Compared to the other drugs I've taken for CD and a boutique of serious illnesses it's a walk in the park.

 

[mindiemonster]

No, and no amount of watching my diet has ever allowed me to go without medication. That said, I know people who can - it really depends on the severity of your disease. When I first got sick, and I was told the first time that it wasn't a matter of if, but when, my colon is removed I found out a lady at my church had crohns disease. She'd only ever had one flare in her whole life and had controlled it with diet thereafter.

Honestly, I combine the two - diet control and my medications. Also, while the side effects are a possibility, they aren't for sure. The only major negative side effect I have with my current medication is slower healing time and that isn't normally an issue. When I was on Remicade, I took it for years before I got any side effects (hives). Unfortunately, that side effect also fixed it so I couldn't take Remicade anymore. I LOVED Remicade - it gave me back my life.

 

[DustyKat]

Hi Kristy and welcome to the forum. :welcome:

I am sorry to hear that you have suffered for so long without a correct diagnosis. :ghug:

Whilst it is true that some people can get by with dietary and lifestyle changes unfortunately they are few and far between and are starting from a mild disease rating. The issue you have is that the presence of fistula’s means you already have complications of the disease and as such automatically thrusts you into a severe disease rating.

What you need to focus on right now is getting yourself into remission and then further down the track you will have breathing space to refocus and see what other measures you can take to enhance your long term wellbeing. I know, as we all do here, the shock and fear that the thought of these drugs bring but untreated and under-treated Crohn’s comes with own set of risks that are equally scary. The biologics, Remicade and Humira, that you have mentioned are exceptionally good at healing perianal disease for most people and that would be no doubt why your specialist has suggested them. Having said that, it is imperative for your ongoing care that you have a specialist you trust and respect and that you can converse freely with. I see you are located in Townsville, is this where your GI is located? Are you able to get a second opinion there or travel elsewhere to obtain one? Our preferred GI is three hours away but I would travel to Sydney (600kms) if it was necessary. I understand that Townsville is much farther to Brisbane but is there somewhere closer if a Townsville opinion is not an option?

Do you have Crohn’s located anywhere else aside from the perianal area?

Dusty. xxx

 

[DJW]

Hi Kristy and welcome.

I want to send you my support.

 

[D Bergy]

I don't think either one is right or wrong. This disease is not that simple. What is right is what works for you. You will find people here that have achieved remission using any number of methods and those very same methods have failed others.

The cause of the disease might vary or to put it in other terms Crohns may represent several diseases or there could be several variations of it. The treatment likely to work can't really be nailed down until the precise cause or causes are known.

Try different things and use what works for you. If it works stick with it until it quits working. If not move on.

I have failed LDN and Imuran. Now I am treating myself. It is working so far so I will stick with it until it fails.

Good luck.

Dan