Question for anyone who's taken Pentasa....kinda gross!

Hi,

I am new to this forum.It is a wonderful place and I'm so excited I found you all! I was diagnosed in 2000 with mild to moderate Crohn's in the large and small bowel. I took Asacol for a few months and started feeling much better. I then became pregnant and stopped taking it.  I haven't been on anything until a couple months ago. I started having terrible D. I practically live in the bathroom. I had a colonsocopy done this past fall and it showed no signs of the Crohn's. I then had a pill endoscopy done in March of this year and they found that most of my small bowel is inflamed and infected with the Crohn's. My dr. put me on Pentasa and I am having worse D and stomach pain! I didn't think it was humanly possible to have more D than what I already was experiencing. My question is this: Has anyone had the medicine come out in their stool? When I go to the bathroom, there are tiny white granules of the Pentasa in my stool. I feel like the medicine is making my stomach feel raw. It's almost like a burning sensation. Am I the only one that has this kind of trouble with Pentasa? Are there other options for treating the small bowel? 

Thanks!

Anna

abi if you are not feeling better on the pentasa, you need to tell your physician and consider changing your therapy. It is normal to pass the beads in your stool, but increased diarrhea and irritation have been reported while taking Pentasa. The other possibility is that it is not a strong enough drug, or it is not being delivered to the right place in your bowel to work.

I had a very similar experience many years ago. After my first resection I was placed on pentasa as a maintenance therapy. I began gradually to suffer the same symptoms. Every time I would go back to my doc, he would order more tests. The tests were negative, so in desperation i finally told him if there was nothing wrong with me it must be the pentasa and I stopped taking them.

For two years I took nothing and during that time I started having obstructive episodes. It was only when i was on steroids that I got relief, but still the tests didn't indicate crohn's. The obstructions just kept getting worse and more frequent. I was put on azathioprine but it didn't help the obstructive episodes and finally ( 12 years after my first surgery) I had a second resection. The site of my anastomosis was completely closed from scarring due to long-term inflammation. I know now that what I was suffering from was the disease, not the drug.

I have since gone back on pentasa, along with azathioprine and have had none of the same symptoms. I am now trying to come off pentasa since I am on my highest therapeutic dose of Aza.

Pentasa bothered my stomach too. Almost a burning feeling every time I took them, 4 times a day, so I knew they were causing the problem. My GI said that since I was on Imuran it was no problem coming off of them. Every time I go in, the nurses ask if I'm still on Pentasa, I guess its just normal to be on it, but my doc said I didn't need to try them again, if the Imuran isn't enough, then the Pentasa won't be much help either. He seemed surprised when I said they were hurting my stomach though. Maybe we should be notifying the fda about our side effects? Feel better soon!

Thank you all so much for the helpful info! I'm glad to know that is a common thing to happen! I actually called my GI dr. this afternoon to schedule another appt. to talk about the stomach pain and D. I am sick of spending all my time in the bathroom!

~Anna

Anna,

Welcome to the board! I am a "newbie" to the board too, but a long time Crohn's sufferer (30 years). I have been unsuccessful with many treatments over the years, until now. I was taking Pentasa 4 pills / 4 times per day, which did nothing for me. (Yes the “beads in the stool” are normal, as you now know). The only good thing about it is that I experienced no side effects. (I would guess that it would be a rare occasion for Pentasa to cause the side effects that you describe).

The only treatment that I’ve tried that really works is called Low Dose Naltrexone (LDN). Please read info about it and my posts on Crohn’s Disease Forum – "Penn State University and Crohn’s Disease" ....if you want to learn more visit www.lowdosenaltrexone.org.

As with everything, what works for one may not work for others but LDN has proven to be very beneficial.
See http://autoimmunedisease.suite101.com/blog.cfm/crohns_disease

LDN is not FDA approved and some docs will not prescribe it (off-label) even though it is “legal and ethical” to do so. Many of them overlook it as a treatment “option” and end up turning to the “most common” biologic treatments like Remicade and Humira. I feared the extreme side effects of those treatments and did some research. I found LDN and persuaded my GI to let me give it a try. So far (7 weeks on LDN) I have experienced tremendous relief of symptoms - from day one. (I was having diarrhea 10 - 20 times a day and a lot of pain before LDN and now I have it about 2 - 3 times a day and very slight discomfort - no pain). Each day seems to get better and better!

The great thing about LDN is that there are: minimal to NO side effects, 1 pill at bedtime, it is inexpensive, and it WORKS!

I am sharing my experience with you for information purposes only and want to encourage you to do all you can do to improve your quality of life.

I wish you well!

Kindest Regards,
Patti

its normal to have the beads in your stool. but the constant pain is not. i am on pentasa and it doesnt bother me, so tell your doc.