In remission for 10+ Years....Why Take a Bunch of Drugs?

[quackedpots]

I was diagnosed with Crohns Disease about twelve years ago, after having cramping/bloating/intestinal issues. My father suffered from Crohns as does one of my brothers. My symptoms were never off the charts horrible, compared to what I saw them go through, but I was on Pentasa/Pred for a little over a year. I decided to stop taking all the meds, and literally have had ZERO symptoms for over a decade.

When my husband went in for his routine colonoscopy in May, I told his doctor about my Crohns diagnosis, and asked if I should have another colonoscopy even though I've been symptom free. He seemed very concerned that I hadn't had one in so long and told me to schedule the procedure ASAP. So I did...I also had an MRI of my small intestine.

The findings were that 3.5 cm of my ileum are ulcerated and there is mild inflammation in my small intestine. I was told to come in and discuss my "options," but they really didn't seem like options at all. He prescribed me three different types of meds. The only one I can remember off the top of my head is Pentasa, but the total pill intake for all three would be fifteen pills per day. One of the drugs required a blood test to see if my body was capable of metabolizing it. He said we would do the drug therapy and then another colonoscopy in six months to see where we stand. If the drugs didn't work, we'd do injections.

My pharmacy called when they got the prescription, to tell me that the Pentasa alone would be $235.00 per month and one of the drugs that was prescribed, they could not even GET and I'd have to go through a larger pharmacy.

I have not started any of the meds yet because something in me is just screaming that taking that many drugs when I'm not having any symptoms is just ridiculous. When I asked the doctor what would happen if I didn't take them, he said, "Well, I'm not going to tell you that you'll get an obstruction, but it's a possibility."

I would love to hear what others think about this. At this stage, I don't think I'm going to take the drugs. I've been fine for ten years, and have had no symptoms. Why put all these drugs into a system that feels fine?

Also, do doctors get kick backs from drug companies?

Thanks in advance and blessings to y'all,

Teresa

 

[nogutsnoglory]

It's important to stop the ulceration from becoming scar tissue, once its scarred the only removal method is surgical. You may feel ok but it's important to be on maintenance medication, your insides are inflamed and could grow worse without treatment.

Doctors don't get kickbacks but they get many perks from big pharmaceutical companies.

 

[Tesscorm]

That's a tough call to make.

I can certainly see why you're hesitant to start taking drugs now. As NGNG said, scar tissues cannot be healed, only removed. However, that said, as you say, you've been fine for 10 years! :ywow:

Before going on the stronger meds, perhaps you can 'compromise'...

- can the Pentasa be covered by insurance? From all I understand, it's a pretty mild drug with minimal risk/side effects.
- look into Low Dose Naltrexone. Again, mild with minimal risk/side effect and very inexpensive. Only thing, there aren't a lot of studies in its use for Crohns (it's been used for years for other treatments at a much higher dose) so some GIs don't like to prescribe it without further proof it works for crohns. But, with the minimal risk and low cost, seems worth trying it.
- try to bring down the inflammation with diet and anti-inflammatory supplements.

And then ask if you can have further follow-up testing to see how things are progressing over six months or so.

But, keep in mind, while 'compromising', you are running the risk of scar tissue forming.

Good luck!

 

[Johnnysmom]

Statistically speaking, I believe you have a 10% chance of having such a mild case of crohn's that you can get away with little or no meds.

You have been lucky so far, so perhaps that will continue. That is a choice only you can make, you have to decide if you are willing to take that risk. But, I would really want to have regular screening done to make sure that the ulceration wasn't getting worse. I would recommend a Fecal Calprotectin test, every 6 months. That way if things did get worse, it might be caught sooner. I am also a fan of the back up plan. If you find yourself deathly ill in a year, what are your options? Have you researched and decided what treatment course you are willing to try? Do you have a good relationship with a GI?

I am sure you will find the right path for you. Let us know how you are getting along!

((((Hugs))))))