Well it is official now, I'm a part of your family

[mikenova]

I had a pill endoscopy done on Monday. It wasn't bad but different than I expected. I had to drink clear liquids the day before like the colonoscopy but no prep other than that. I swallowed the pill at 8:30 and they attach a computer to your waist and about 8-10 electrodes on your chest and stomach. I didn't realize it would be that complex. They tell you not to sit around all day and to move around so I went to the mall. It was kind of awkward because this protruding device was on my lower half. I had a jacket and left it closed. It will blink blue when it is getting data and red if it isn't so they tell you to check the light every 5-10 min. About 2 hours later you can drink and 4 hours you can eat a small meal (no problem for me since I eat practically nothing anyways). I went back to the office at 4:30 and waited for the red light to blink to signify the 8 hours was up and they took off all the devices. I passed the pill yesterday about a day later or so and it didn't hurt at all.

I got a call from my doctor and the pillcam showed moderate ulcers in my small bowel. The most likely cause is Crohns. I told him I haven't taken anti-inflammatories for a long time other than some Tylenol cold a few weeks back. The fact that my presentation is typical for Crohn's and my symptoms are very common with Crohn's makes the diagnosis almost 100% certain.

He is worried about side effects so he is starting me on a drug called Pentasa at 500mg 4 pills 2 times a day. Has anyone been on this? Experiences?

I'm sorry to be part of your family, but thanks for making me feel welcomed regardless. I look forward to talking to you all more in the future.

All the best.
Mike

 

[amor151]

welcome to the wondeful world of crohns then! pentasa is a relitavely safe drug which most people are on for life. i believe it is an anti-imflammitary and doesn't have many side effects thankfully. i am also on pentasa 2 500mg pills 3 times a day and have had no side effects from it at all over the 6 months ive been on it.

hope finding you have crohns doesnt affect your christmas! all the best with the disease and if you need any advice this is the place to be

Henry

 

[Guest]

hi & welcome mike

i'm just trying to achieve the right dose of pentasa myself - i hope it helps relieve your crohns symptoms. i've heard really positive reports on this medication.

dingbat.

 

[D Bergy]

Welcome to the family. They say you cannot pick your family and this sure is evidence of that as no one would volunteer to be in this one.

I hope the Pentasa works for you. Please keep us posted on the results.

Being you are part of the family, I will forward my Christmas list to you. (just kidding)

Dan Bergman

 

[lizzyfan]

Welcome my fellow Crohnie!

 

[jobengals]

hey man, welcome

i'm on another form of pentasa called lialda. It's time released so I take it once a day. I hope you find the medication helps you feel better, and remember to try and stay positive through all this .... shit, so to speak. Having an online family who really understands you will help :smile:

 

[Kev]

Hi mike... welcome to the family... or at least the forum familiar family. wonderful christmas present. at least now you have a diagnosis, and know what you are dealing with. As for the 5ASA family of drugs, it's just an anti inflammatorie, and its not known to have any major side effects. 4 gr a day is a fairly common dosage. I have been taking it for nearly 2 years now, and except for some migraines at first (remedied by changing from 2x 500mg 4 times a day to 3x 500 mg twice then 2x 500 mg at bedtime, AND eating 1st then waiting 1 hour to take my meds - per the manufacturers FAQ section re side effects at their website) i've had no problems with the drug. however, it wasn't enuff all by itself to stop my disease, and i've had to combine it with various other meds.

Yeah, joining our family is a mixed blessing... not joining wont' change your diagnosis... and participating here has helped me immensely, both in coping AND in feeling that i'm not alone with this disease, perhaps even leading me to a possible 'control' drug that I probably wouldn't have learned of otherwise. I hope that you derive as much benefit as I have from stumbling upon this site.

 

[mikenova]

Well my insurance wouldn't approve Pantasa but they did approve Asacol 4 pills 400mg 3x a day. The issue I'm having is extreme dizziness and headache especially when standing up. I'm having a hard time walking around.

Has anyone felt like this before on Asacol? The sad thing is my stomach feels a little better, but I can't live like this either. Maybe it will get better, or should I call the doc?

Thanks guys

 

[Kev]

Well, I got severe headaches (very similar to migraines) from taking my salofalk. I was told by the docs, the pharmacist, and the info pamphlet that came with them, to take them with food. but when I went to the Dr Falk website, they said to eat, wait 1 hr, then take them. I also switched (on advice of GI at the GI clinic) to take them (8 500 mg pills daily in total) in 3, 3 and 2 pill increments, with the last 2 at bedtime. Using both of these recommendations, my headaches (which came with aversion to light, sound and caused me some dizziness) went away. Been taking them like that for over a year now all A-OK.

As far as the excentricities (sp?) of insurance companies saying OK to asacol but not to pentasa (or any of the other brand names) who knows what 'their' rationale is. apparently all of the 5ASA's are still protected by patent rights, and you can't get a 'generic' low cost no name equivalent (at least not yet) so it may be something as simple as the cost of one is slightly lower than others. I dunno. sheer speculation on my part. My understanding of all of the 5ASA's is that they are literally nothing more than 5 times stronger aspirin (I used to be able to spell acetasalisylic acid, which is what ASA actually is, but not anymore, so I opt to use a brand name that everyone should be familiar with) to which is added a special coating to buffer it thru it's journey to the affected/targeted area of the GI tract. Which is why it's important to take it with plenty of fluids, to flush it past the stomach (where some people are sensitive to aspirin) and into the GI tract where it will hopefully release itself and do some good treating the inflamation. By itself, taking 5ASA for treating this disease is like taking any aspirin for a severe viral infection. it won't stop or slow the disease, it simply helps moderate/mollify some of the outstanding symptoms. Think everyone on here who is taking it more or less agrees it really doesn't do anything 'major' in treating the overall symptoms. that doesn't mean you should stop taking it. It may not do anything great for you, but it shouldn't cause major harm, and it just might help (a little). I kept taking mine, even while on LDN, for those same reasons. Even tho it didn't do any great shakes for me in the past few years.

 

[cindypat]

I have just started taking Pentasa 500mg, 2 pills 4 times a day and am hoping that this one is going to work. I had to pay a $100 co-pay because it is not a preferred drug with my insurance co., but I am willing to pay it if that is what makes me feel better.

 

[TheyCallMeRC]

I took Pentasa a few years ago after Asocol didn't work. I don't remember the exact dosage but I do remember it was 4 pills 4 times a day( 250 mg ea. ??? ).. That was 16 pills YUK !!!!! Going to give Remicade a shot this coming week...

 

[Shane]

Think everyone on here who is taking it more or less agrees it really doesn't do anything 'major' in treating the overall symptoms. that doesn't mean you should stop taking it. It may not do anything great for you, but it shouldn't cause major harm, and it just might help (a little).

Yep, I'd go with that. I tried taking just Pentasa (but, double my normal dose) after a cycle of Pred once. It did absolutley nothing in any noticable way. I gave it a week (it was awful) and then went back to the Pred. But, having said that, I'd never stop taking it, just in case.

 

[TheyCallMeRC]

You know, I will open up and be honest on this forum and say that I don't know if I gave Pentasa a fair shake or not.. I only took it for a month. Like I said above, I had to take 16 pills a day, and it got really old really fast, and I just didn't want to deal with it anymore. Asacol wasn't as bad, so I did it for a year.. But I am not a pill person so having to remember and then swallow those things just wasn't for me.

 

[Kev]

Two words... Pill calendar... Nuff said

 

[TammySue62]

Yep me too
Pentasa is more like a maintenance drug for CD people. I have been on it for years and still gag when trying to swallow those big suckers. You think that they could put some kind of coating on them so it would be easier to swallow.
Just my opinion!!!