New here with a sickening occurance with Pentasa...

[Fuzzy_griffon_cheeks]

Hello everyone, ~shyly waves

My name is Elizabeth; it's wonderful to meet you! I never thought back in '01 when I was diagnosed (April 14th, 2001) I'd ever be on a forum for support but I had a lot to learn as a stubborn and self sufficient teenager back then. *hehe* I've since grown and gladly welcome this seemingly amazing place so !yay! for support groups and people who understand! =D ^_^

With that being said and before I go into massive detail about my story (it's a novel and at the moment don't have time to write it out), I have a pressing matter that I wonder if someone out there might have experience first hand.

I have been (unfortunately) familiarized with Pentasa, and not to my joy either. My doctor didn't tell me nearly enough about this medication and I found out about the pro's and especially con's far too late. My husband, the sweety, ran across this forum and the thread on Pentasa and read to me some of what he found; some of the symptoms and issues people were having; the ill effects etc. and I cried hearing what he read.

I started taking Pentasa (blue pill of death for me) back in about mid January on I think the 18th. I was on 8 pills a day; 2 pills 4x's daily (I took it every 6 hours) and after polishing off my first bottle of 250 and breaking into the second bottle, I came to my 3rd scheduled dose for the day on the 7th of February and couldn't bring myself to do it. My body was screaming no-no-no!!! No more!!! and I've learned since my pediatric GI doctor told me to be in tune and listen to my body that I'd indeed better listen to my body. So I didn't take the dose and stopped the medication.

I thought the Pentasa was working and it did I think for about 6 days total when the pain that I had been having suddenly returned and was slowly beginning to amplify. Well, long story short, my doctor of course said yeah don't take any more and lets take you off the entocort as well and put you on Humira. Okay fine, no problem. Once the insurance junk was all out of the way and boy was that a nightmare waiting for that to kick in (the fire in my gut was enough to make me want to slit my own throat it was so bad >,O). So after a month of agonizing waiting, I fonally got the Humira. I thought it was helping and really it is/has been as I've noticed it's been trying to fight the inflammation that's there but there's something that's preventing it from doing so--something that's still in my body that's continuing my inflammation. This something is I know to be, Pentasa.

After going back through my Crohn's journal ( I can not tell anyone how profoundly valuable it is to have one who has this disease), I realized that through the week of Jan. 30th to Feb. 5th, I had thrown up 3 times and all three times there was violent pain and nausea before hand and afterwords, I would find these weird--and large--bullet shaped white masses of bizarreness in my vomit. I at first thought nothing of it but as began seeing these same "lozenges" after starting the Humira (it's like it was purging it from my system) and after taking not of the taste of these things as if not before they would come up ~shudders~...I realized it was Pentasa.

After stopping this medication and being off it now for almost 7 months to the day (As of the 7th), I am still throwing these lozenges up. I have been in excruciating pain, the anxiety is like no other I've ever experienced, my body is beyond exhausted yet I still have to fight as I don't have a choice.

Is there anyone out there that hasn't passed these pills through their system like they're supposed to and kept them all hoarded inside them for months on end?

My stomach/GI tract doesn't grant clearance to things that aren't meant to be digested and in turn with throw them up, so it's a no wonder that this medication didn't work for me. I have a 2nd colonoscopy and endoscopy the 8th (this week) and my doctor is still convinced--even though he's determined through a test on one of these lozenges that they are inorganic--that it's just mucus. How can something my body produces--like mucus--be inorganic? He's very hesitant and rather hardened to the idea to acknowledge that it's the Pentasa which I'm still vomiting. The taste I get giving them back is the same taste I got while taking them and I always feel better after giving them back.

I'm at a loss and there's so much more I could tell you but this is already far too long (occupational hazard as a writer). So if anyone out there has a similar happening with their Pentasa, please..... I'd love to take a testimony or...something to my doc on Wednesday to help prove that I'm not crazy because if he finds anything in there in mass conglomeration, I want it removed desperately. I don't know what I'm going to do mentally or for that matter, emotionally if he finds nothing and I'm clean. =(

Help? Some insightful advice/experience? ....Anyone?

 

[Astra]

Hi Elizabeth
and welcome

I'm sorry, I have no idea about this!
Pentasa is my maintenance drug, I've been taking it for 5 years with no problems at all!
hopefully your scopes this week will determine what this is, and hopefully someone else may come along with answers.
glad you found us, lots of friends here for you
lotsa luv
Joan xxx

 

[Dexky]

Welcome Elizabeth!! I gotta say I'm with Joan!! My son has been on Asacol since Dec '09 and hasn't had any issues with it at all. It's the same medicine just formulated to release at a different location in the gut. I hope you find out what's going on and how to solve it soon. Good luck!!

 

[DustyKat]

Hi Elizabeth and :welcome:

I'm sorry to read that you are going through this. I have not had any experience with Pentasa but I personally cannot see that they could stay in your system for 7 months without being absorbed or expelled but I guess stranger things have happened. I wish you all the luck in the world with your upcoming tests and I hope you get the answers you need, please keep us posted on the results.

I hope you stick around as this is a great place for info and support. Welcome aboard!

Take care,
Dusty

 

[Crohn's 35]

HI Elizabeth :bigwave: welcome to the forum. I have never heard of Pentasa doing that to anyone and I have been on this forum a couple of years, your story is the first. The only person who was on here a while ago was taking B12 supplements that didnt break down and the Gi found about a months worth in her intestines. B12 is essential but you have to get the ones that desolve under the tongue.

Pentasa is also for mild cases. It never seemed to help me so I stopped taking them. Why be on meds that arent working. Maybe it is a generic brand? The most people ever see are granules in their stool but not throw them up.

I know you are probably nervous of having the Endoscopy and Colonscopy but dont be, just ask to be put out, some do some don't. That should once and for all let you and your doctor know what these "lozenges" are. Very bizaare I must say.


Glad your hubby was searching for you, he is a keeper, to be of a support for you, let us know how your scopes turn out,because I for one am very curious! Glad you are here.:ghug:

 

[Crohns08]

Hi Elizabeth,

I actually took Pentasa when I was first diagnosed and had no issues. However the second go around with it, my body could not tolerate it. Nothing to your degree though, my body would have immediate reactions to it and I would throw it up within the time it was supposed to release because I would see all the small white beads within the capsules in my vomit. I'd also in the mean time have nausea and very painful abdominal cramps. Needless to say, I am no longer on that drug!

 

[Rebecca85]

Hi Elizabeth, I'm sorry you went through such a bad experience. The pills are designed to dissolve at a certain pH level (not time released) so I guess if they got stuck and didn't pass to the right area they wouldn't dissolve. Also if you didn't have the right pH for some reason the pills wouldn't dissolve and then get stuck further down. But I would have thought you would have thrown them all up by now!

 

[Fuzzy_griffon_cheeks]

Thanks Joan. ^_^

So sorry about the late reply on this, >,O been havin' a time with recoup after the scopes (my body always throws a fit for a good week or maybe 2 depending).

That's good that you've not had any problems with it. My body is just excessively finicky and is good at the whole attacking itself and anything else it deems "worthy" thing. -__- My maintenance drug now is the Entocort which I've always done well on. Vasdev found a heated allotment of gastritis and oddly enough no weird globs of anything on the inside yet I have still continued to throw them up for a total of 104 now and counting. Being that the Pentasa never once passed through my system I know it to be the very thing I'm still throwing up now despite the bizarre anomaly of Vasdev not finding anything in there.

I almost wonder if because there's so much inflammation and as my mom wondered too, that maybe in the areas where the lozenges are present, the inflammation has bubbled around them so that it looks like a solid wall of tissue but really there's a pocket there concealing a WMD. lol All I know is that truth is stranger than fiction and that there have been some pretty bizarre happenings within the medical world of such things. @_@

I'm now weening off a started dose of 50 mgs Prednisone and am on the Entocort a long with hits here and there of AcipHex (when not purging the Pentasa) to manage the gastritis. It's still a slow battle but I'm glad to be doing far better than I was. ^_^ I'm back to cooking and doing household necessities again, yay!

 

[Fuzzy_griffon_cheeks]

Hey Dusty!

Sorry for the late reply, gotta love how life and whatnot likes to get in the way sometimes of ...life. lol

I know, you'd think that it would be impossible but when my body has this habit of attacking things it finds offensive--of which obviously it did with this drug @_@--it's no surprise to me that it horded them the way it did and is still doing. With the amount of pain that these "petrified" doses have caused, it often is enough to paralyze the muscles to even vomit because it can be so intense. I only know it's the Pentasa as while taking it, it never passed through me like it was supposed to. =/ It's only ever come up. -__-

As I told another poster, I almost wonder if because there's so much inflammation and as my mom wondered too, that maybe in the areas where the lozenges are present (even though my doctor didn't see anything), the inflammation has bubbled around them so that it looks like a solid wall of tissue but really there's a pocket there concealing a WMD. lol All I know is that truth is stranger than fiction and that there have been some pretty bizarre happenings within the medical world of such things. @_@

I'm doing better though despite the gastritis that was found and so am on Prednisone and Entocort again; both drugs I've always done well on. ^_^

(((hugs)))

 

[Fuzzy_griffon_cheeks]

Hi Pen!

Thanks for the welcome and forgive me flagrantly late reply on this. >,O Life's been happenin' too fast. lol

Gastritis was found but no lozenges despite the fact that I'm still throwing them up (lost 3 in the last 3 days and boy do I feel better) for a running total of 104. @_@ My mom and I have a theory that in the areas where the lozenges are present, the inflammation has bubbled around them so that it looks like a solid wall of tissue but really there's a pocket there concealing a WMD. This in turn could explain why Vasdev didn't see anything while in there.

And don't worry, I wasn't afraid of the procedures (had like 10 or so since '01--for me it's the norm), more so the possibility of evil findings. XD But at least the only evil finding that was there was a treatable condition being gastritis. I'm on pain meds for that too as boy is it unmerciful when it gets going. @_@

(((((hugs))))))

 

[Dexky]

Wow!! I can't believe it's still going on Elizabeth!! Glad you came back to update us!! Keep posting!

 

[DustyKat]

Hey Elizabeth, :bigwave:

Thanks for the update. I'm so glad you feeling better and getting some relief but sorry to hear the weird throwing up is still going on. Hopefully this will resolve itself in time.......may be when you've got no Pentasa left ay. Good luck!

Keep getting better, :hug:
Dusty

 

[kello82]

can i ask what are all the meds you are on currently? complete list?

and have you ever fished one of these things out of the toilet (or wherever you throw up) and examined the texture and overall characteristics of it?
lol gross i know, but sometimes its very helpful.

and also, i know its hard with all the horror stories that people share and ask for advice on, whether its a medecine, surgery or what....its hard not to get freaked out by them. but also think about the fact that people who take the drug and have no issues.....most likely arent going to feel the need to share their experience over the internet. you know?
not saying that the risks should be ignored, not at all, but its not worth crying over hun! everyone is soooooo different, and while other patients' experiences are valuable absolutely, the likelyhood of you having the same experience is quite quite low. maybe that will help the fears a little bit.

and also major other thing, if you indeed trust your doctor? know that HE knows of all of the potential downsides but in his best opinion, thinks that the benefits far outweigh the risks. it would be nice if docs were more open about the downsides of things and able to express their justification so we arent suprised later when an arm falls off and its like "ohhh yes that can happen with pentasa" (haha total exaggeration ) but you get what i mean.

 

[Mountaingem]

Hi! I had a similar experience when I started Pentasa about 12 years ago; my doc had no mercy on me and said "if you throw them up, take another dose." Nice, huh? He said I wasn't breaking them down because of the flare in the illium and prescribed prednisone with it. It took 6 weeks of vomiting/dry heaves and Compazine for the vomiting before the flare stopped. I haven't had this problem since;just occasional dry heaves.

 

[Fuzzy_griffon_cheeks]

Hi Toni! ^_^

I apologize for the late reply...life kinda got in the way and I was just..yeah. oo overwhelmed with all that had piled up with me not feeling good but that since has changed as I am feeling better, though still purging the nasties.

What's crazy is that I never had little beads present themselves; it's always been a perfectly formed, swelled version of the contents in pill shape, so as to suggest by body attacked it, hardened it and preserved it like a mummy of death. -__- lol The gastritis that in there now I'd say feels exactly like the pain that the Pentasa has caused..for all I know though it may not be the gastritis but just simply the left over Pentasa... I'm not sure and sadly won't be till all that stuff is out. ~sighs~ Oh well.

At least I know the Prednisone and Entocort is always a good match for the Crohn's. I hope and pray that my body won't decide to reject those to forms of treatment down the road as in some cases can happen because there the only things that work most effectively to date. XD

(((hugs)))

 

[Fuzzy_griffon_cheeks]

Hi Rebecca! ^_^ (((hugs)))

Sorry for taking so long in replying, >,< I'm terrible.

But at least I'm now doing better as Vasdev put me on some Prednisone and now additionally Entocort for maintenance.

Oh how immensely true that pH balance is crucial and for me, I don't even have much of anything being produced in the way of acid in my gut--no good or bad acid. XD This is even more so true while in a flare up so it surprises me not in the least that if the Pentasa requires a certain acidic environment to function and I didn't have that environment, that I had really bad troubles with it. -__- Oh well, live and learn.

I too would have thought that I would have gotten rid of them all by now but no...no my body likes to do things the hard way by means of throwing purging them up one at a time. >,O I've only ever lost 2 at a time once and that's it. Really I think it's the fact that they're so sticky and that they cause so much paralyzing inflammation that they can't come up any more frequent than they do. In the past (though not now) there would be so much pain I couldn't even throw up despite me desperately needing to so I'm thinking the inflammation its caused and causing prevents me from purging them out any faster. =/ All I know is that I will be glad when they're all gone. ^_^

@};-'-----

 

[Dexky]

You know Elizabeth, what Kelly says makes a lot of sense. Have you ever had one of the vomit capsules analyzed??

 

[Lisa]

They almost sound like tonsiliths.....do they smell really gross too?

Hope you get some relief soon......

 

[Astra]

Hi Elizabeth

Thanks for the update! Can't believe it's still happening tho?
I would get one of them and split it open, smell it, taste it even! Then take it to the quacks and demand an answer once and for all!
I've never heard of Pentasa doing this, oh and mine aren't blue neither, they are an off white and speckly!
hope you find an answer soon
xxx

 

[Fuzzy_griffon_cheeks]

I will Mark thanks! ^_^ :hug:

 

[Fuzzy_griffon_cheeks]

LOL Love you Dusty! You're awesome, thanks! :hug: :biggrin:

 

[Fuzzy_griffon_cheeks]

Hi Jeannette! ^_^

Yeah...gotta love the mindlessness behind that one. Oh you threw it up? Take more! =D No! =D lol I've got a better idea, how about we consider the reason why I threw it up... Like maybe the med isn't working, it's not strong enough because the inflammation is too bad or my body just doesn't like it. XD Oh well. We live and learn and sadly there's no way to know what a med will do unless we take it because it'll inevitably be different for each person. =P

 

[Fuzzy_griffon_cheeks]

...Suddenly it dawns on her fuzzy cheekiness that she can "kill 4 birds with one stone". XD

Okay, now for an epic response to all you lovelies... :biggrin:

Current medication list:
Prednisone 25 mgs at a 5 mg taper each week now till gone.
Entocort 9 mg daily (take 3 of them at 3mgs each)
10k units of Homeopathic strength Vitamin D in drop form
AcipHex 20 mgs for the gastritis though I haven't been taking it as my system has been doing a purge the last 4 days, haven't thrown up yet tonight but suspect another purge from the signals I'm getting from my body. I only take the AcipHex when I'm able to keep the food down.
Tramadol to keep the pain at bay from either the gastritis or the inflammation the mummified Pentasa is causing--if not both. XD
HCL-Prozyme a.k.a. hydrochloric acid from my homeopathic doctor so I can digest at least my breakfast (that stays down and if I'm lucky lunch but dinner, nope...forget it).
Uhhh, over the counter stuff of prenatals vitamins, lyzine, MSM (really a help on the joints), Claritin and salmon oil. Was taking calcium but I can't digest the calcium carbonate they like to put into it. -__- Talk about indigestion...

The Pentasa lozenges or rather naked white capsul contents that looks like a twinkie with "cream" (drier white tiny conglomerated beads of synthetic bliss) filling, have been examined by me multipule times. I have even in desperation ripped them from the toilet with a bare hand just to be certain of number count (this being when one came up unexpectedly and no gloves were readied and normally I would be wearing a glove). I've also pulled them from my mouth as I've filtered the vomit through my lips while throwing up just to ensure the number count--of which is currently sitting at 104. :eek2:

They smell like my stomach as some are white, off white, slightly yellow, some are stained, few are soft but most rock hard like hard silicone--these ones I'm guessing being the ones that have been there since February. -__- They break open and when washed off, kinda like a terry cloth in texture. Spongy and just plain abrasively weird.

Yes, a lozenge has been taken to Vasdev long ago to test hence the mention in my first post of him getting inconclusive results and saying as the lab techs said that it was inorganic and most likely mucus. But at this last appointment here the 7th--last Thursday--I let him know that in no way had they passed through my system like they had been designed to do and that this whole time they'd been coming up, causing pain from about day 5 after taking them. He now I think understands a little better as for some reason I just couldn't explain like that in simple/blunt enough terms before hand. ~face palm~ Because yes, he too has said that they should have been expelled long before now (yeah do tell lol) but they haven't. First thing off the bat my body or rather the Crohn's attacked it and that was it. >,O It's been quite the battle since then. I keep one in the fridge for reference and if you want I'll post pics of it or a fresh one...or if I still have the pics from the last time I displayed one broken in my gloved hand, those ones. ^_^

And Kelly, I'm not totally sure where you're going with this:
"and also, i know its hard with all the horror stories that people share and ask for advice on, whether its a medecine, surgery or what....its hard not to get freaked out by them. but also think about the fact that people who take the drug and have no issues.....most likely arent going to feel the need to share their experience over the internet. you know? " But I'll do my best to answer.

I cried when my husband found the thread on Pentasa on here because it was pure relief; I had an answer...I wasn't crazy for having the issues I was with the drug like I was beginning to think, and it was pure comforting joy to know that I wasn't alone with the nasty battle. Though I knew no one else would have my exact symptoms or issues with the drug I posted becuase I understood how valuable the experience of my battle would be to someone should they have the same problems. It was posted for potential empathy and comfort as well as an inquiry to see if by chance some had indeed heard of holding onto the suckers for so long. >,O

When I first posted this thread several weeks ago, I cannot tell you the kind of anxiety I was going through. I had no answers, Vasdev wasn't wanting to think that it was still the Pentasa as there were things he didn't yet understand that I had failed to get across to him (my fault), I felt like I was being forced to accept that I was crazy because no one else could fathom my internal battle. I was afraid of the procedure not giving me any resolute answers and when I woke up after the fact and was told nothing was found, I was devastated and couldn't stop crying because either I was indeed crazy or I had purged the last before the scope. I thought I was condemned untill I reminded myself only time would tell if more would come up. No one would truly be able to understand that over all anxiety unless you were me as amen to you words Kelly, everyone is indeed different! And everyone with Crohn's is even more vastly different because what effects one won't effect another.

But anyway, after the scoping, my system was in WWIII because of that internal "rape" and the pain, bloating and after effects had me not doing so well... I was also still throwing up more lozenges but after loosing one the 4th of this month, it's like an additional burden has been lifted as I immediately saw health changes. I've since lost 4 from then and continue to speedily get better so I know this has to be getting close to the end, especially considering my hair isn't falling out like it was. :eek2:

And I know Vasdev knows of the pro's and con's to meds but as a doctor who's always keeping up to date on drugs, it's easy to forget to mention pill specs when talking to the patient and it's easy for us as the patients to forget to ask those key things because of that trust. XD So it's up to us to do our research if not just give it a try because we all know what works for one won't necessarily work for another and the only way to find out sadly is by trial and error--and boy have many of us experianced lots of fun error. XD

And as a randome side note, with me, my emotions were the first to go before the Crohn's was diagnosed so I now have issues with pseudo seizures, devastatingly emotional mood swings that I have no idea when they may decide to hit and on those days all I can do is just cry. There's nothing else too do but that as it's how my body copes, whether I want it to or not. -__- I hate crying but I get to sometimes with this disease. lol Oh well such is life. => At least I am blessed to have my Bible, the novel I'm writing and my artwork to see me through the trials of Crohn's for I know there are some that don't have a much needed outlet through their strife or know where to turn. =/

And before I make this any longer I'll sign off and let y'all talk amongst y'selves.

 

[Dexky]

I'm glad it's getting better Elizabeth!! I don't think you're crazy but that's been one crazy experience!!!

 

[kello82]

And Kelly, I'm not totally sure where you're going with this:
"and also, i know its hard with all the horror stories that people share and ask for advice on, whether its a medecine, surgery or what....its hard not to get freaked out by them. but also think about the fact that people who take the drug and have no issues.....most likely arent going to feel the need to share their experience over the internet. you know? " But I'll do my best to answer.

I cried when my husband found the thread on Pentasa on here because it was pure relief; I had an answer...I wasn't crazy for having the issues I was with the drug like I was beginning to think, and it was pure comforting joy to know that I wasn't alone with the nasty battle. Though I knew no one else would have my exact symptoms or issues with the drug I posted becuase I understood how valuable the experience of my battle would be to someone should they have the same problems. It was posted for potential empathy and comfort as well as an inquiry to see if by chance some had indeed heard of holding onto the suckers for so long. >,O

When I first posted this thread several weeks ago, I cannot tell you the kind of anxiety I was going through. I had no answers, Vasdev wasn't wanting to think that it was still the Pentasa as there were things he didn't yet understand that I had failed to get across to him (my fault), I felt like I was being forced to accept that I was crazy because no one else could fathom my internal battle. I was afraid of the procedure not giving me any resolute answers and when I woke up after the fact and was told nothing was found, I was devastated and couldn't stop crying because either I was indeed crazy or I had purged the last before the scope. I thought I was condemned untill I reminded myself only time would tell if more would come up. No one would truly be able to understand that over all anxiety unless you were me as amen to you words Kelly, everyone is indeed different! And everyone with Crohn's is even more vastly different because what effects one won't effect another.

ohhh no no i wasnt being critical of your post or anything not at all! i misunderstood and thought that you got upset when first coming across the thread because the side effects that other people had scared you and i didnt want you to be scared of things like that, you know? but now i get that it was tears of relief, i gotcha now.

 

[Fuzzy_griffon_cheeks]

ohhh no no i wasnt being critical of your post or anything not at all! i misunderstood and thought that you got upset when first coming across the thread because the side effects that other people had scared you and i didnt want you to be scared of things like that, you know? but now i get that it was tears of relief, i gotcha now.

Oh I figured you misunderstood as there were something in the original post that were vague, which was totally my fault. XD My head really wasn't together when I wrote it...it was too encumbered with despair. -__- All I said was I cried but not about what. *lol*Being specific helps believe it or not. :ybiggrin:

I wasn't even sure at first when I read your post how to take what you said as I was misunderstanding on my end too. >,D So I figured I'd just stay neutral and see; couldn't tell if you were trying to comfort or mildly scolding. How easy it is to misinterpret things on line. @_@ So I always try to be careful how I respond if I'm unsure.

And don't worry, I don't freak out with stuff I read on the net concerning meds because I know how one person reacts won't be the same as how someone else might. And how true that has been with me and the Pentasa. ~falls over~ So far I've given back one glob a night since last Friday evening, for now a running total of 108. -__- (I counted wrong on the last post it should have been 105--even I can barely keep track without the help of my journal). This has definitely been an emotional week; my body can't tell if it's coming or going. *giggles*

 

[Fuzzy_griffon_cheeks]

I'm glad it's getting better Elizabeth!! I don't think you're crazy but that's been one crazy experience!!!

Yes, I can haz get off ride nao and haz cheezburger that stayz down? lol

Man this week has been one for the books. Been givin' back these suckers every day since last Friday and my body is just really thrown for a loop because of it. Its relieved but very neurological from the cleansing purge. @_@ I've been going to bed every day this week at about 9 am only to rise anywhere's from 1 to 2:30 pm because my body, and my head, just can't center themselves--in some cases because they're too happy. Tuesday night's purge I think it was, left me so happy that I was wired and in no way could I go to bed. >,O I really hate it when that happens. LOL Oh well....tis just been my luck this week. Thank goodness for the weekend though, maybe I can recalibrate. ~falls over~

 

[lynx]

Hi Fuzzy just wanted to say i hope things smooth out for you and wow interesting post. I have been on asacol for 5 years and have had some issues with the drug but nothing to this extent...on my last coloscopy done in the hospital though i saw the pictures and in one of them there were two little asacol pills stuck to the side...LOL. I thought it was hilarious and had to double dose on my morphine cause i was laughing so hard it was killing me.

Its interesting that the tests were inconclusive and they came back saying that it could be just mucus. Is there anywhere else you may take one of them and get it tested? And great idea on the journal...i may have read that you should do that somewhere here but you drove the point home. I should probably start one as I have a hard time remembering ...just about everything. Hope you feel well soon.

 

[Mountaingem]

Hi Jeannette! ^_^

Yeah...gotta love the mindlessness behind that one. Oh you threw it up? Take more! =D No! =D lol I've got a better idea, how about we consider the reason why I threw it up... Like maybe the med isn't working, it's not strong enough because the inflammation is too bad or my body just doesn't like it. XD Oh well. We live and learn and sadly there's no way to know what a med will do unless we take it because it'll inevitably be different for each person. =P

Yeah, that attitude was my first intro to what some doctors consider "care" lol. It's like when you're in pain and they're like, "So what painkillers do you want?" And I'm going, "How about running some tests to find out what's causing the pain?" Seems like common sense right?:ybatty:

 

[Fuzzy_griffon_cheeks]

Hey there linx, mountain gem and everyone,

Sorry about the long over due reply. >,@ I've really been havin' a hard time over the past few months. My body is wearing down and flippin' exhausted. That vile Pentasa is still coming up for an ongoing tally of 141 lozenges. :yfaint: Physically, emotionally and mentally, I'm just taxed to no end. My body's finally getting chronically neurological and has been causing a lot of mild, ongoing seizure activity. And that neurological activity is what's really doing me in. I can't sleep when I have a "hot" head so I end up being up all night when there's "less" stimulation around me and won't go to bed till I practically drop from exhaustion. That in part is because I'm physically not able to get myself into the bathroom and taken care of before bed so I can go to bed.

My precious husband is becoming just as taxed from my health as I am. I'm barely able to take care of him. He's exhausted usually when he gets home from work--air craft mechanic--and so because I love him so much and want to just naturally, I take care of him even when I can't physically muster the strength. I plod through making dinner despite.

Not getting the rest I need is killin' me. MY short term memory and comprehention is shot. I can't even focus hardly to work on my novel--I want to desperately--and barely have strength at times for my artwork (I draw and color).

It would also help if I had an immune system: I got sick last October/November with the icky weird bug that was floating around and haven't been able to get rid of it because it's viral not bacterial. It's mutated several times and now it's to the point where even Kyle (hubby) has it and keeps randomly rearing its ugly head and fatiguing him even more. Course it obviously doesn't help that he stays up late just to spend time with me, because then he doesn't get the sleep/rest his job really requires. We can both barely take care of one another but yet we do it anyway...no one else to do it so we're elected. XD

I'm luck too that my mom is living with us as she helps when Kyle can't, she too is having a hard time with all that's been going on with me this year. She's already got enough on her plate as it is... =/

Oh yeah and before I forget linxs: I could have a lozenge tested at OHSU but the results I doubt will differ. ~going back into my journal~They've been in my system since January 15th and stomach acid is good at stripping away important signatures of pills in this form--it digests for pete's sake, that's its job! lol After my last appointment with Vasdev a couple months ago, I told him that none of the Pentasa had passed through me while taking it. That seemed to change the view a little bit. Within 5 days my body had already rejected or rather attacked it.

And after finding out it require a certain ph balance to work, that explained everything. After being diagnosed, my good acid shut off and the bad was on overdrive...then, the bad shut off too so there was hardly anything there for me to digest with. This doesn't work if you plan to take Pentasa apparently. ~face-palm~ I'm taking hydrochloric acid every day and that's really helping to get these suckers up and out, but my body can barely handle the purge neurologically speaking. It's so stressed. I want things to be done but I know they won't be for another few months. Supposedly as per the math of my records, there's 190 some-odd pills that should be inside me and I've already lost 141. I need to go through and average the monthly purge number...not that I want to know but yet at the same time.... :yrolleyes:

So yeah, this is what's been going on. So sorry I haven't been active on here. Mentally, I just can't keep up, it's too much.

 

[jboi85]

...
Tramadol to keep the pain at bay from either the gastritis or the inflammation the mummified Pentasa is causing--if not both. XD

My consultant took me off Tramadol while I was last in hospital, as he said, 'it causes terrible cramping in Crohn's patients, with diarrhoea, constipation, and nausea'
Instead I was prescribed Oxycodone, which I find works well enough, if you can put up with the 'floaty' feeling and the incoherent sentences that come out of your mouth because it makes your head go a bit curly!

It may have been just me though, because I was in with a suspected blockage, but it may be worth talking to your GI to make sure?

I don't really know, I'm no expert, far from it, and I'm not trying to worry you, but maybe it might be causing some grief?

 

[Fuzzy_griffon_cheeks]

My consultant took me off Tramadol while I was last in hospital, as he said, 'it causes terrible cramping in Crohn's patients, with diarrhoea, constipation, and nausea'
Instead I was prescribed Oxycodone, which I find works well enough, if you can put up with the 'floaty' feeling and the incoherent sentences that come out of your mouth because it makes your head go a bit curly!

It may have been just me though, because I was in with a suspected blockage, but it may be worth talking to your GI to make sure?

I don't really know, I'm no expert, far from it, and I'm not trying to worry you, but maybe it might be causing some grief?

Oh no worries my dear. ^_^ And that was then. I have since stopped taking it (probably been 2 months almost 3, not sure of the time) because I was allergic to it. I was given tramadol in it's place and was allergic to that too. I do the same thing with antibiotics, my body hates them and I always itch to death with them. -__- I never had pain from the Darvocet but rather it knocked out my pain rather quickly. Was on it about a month I think before switching.

The pain I have now is random and not too often, but when it hits, it hits. >,@ I never had troubles really with the Tramadol either other than it wasn't really strong enough. Darvocet also just got taken off the market period as it was apparently doing some really bad things to people and causing SEVERE side effects.

 

[carrollco]

Hello fellow writer! I have written three books through my illness with Crohn's so don't give up. I admit to being a type A personality so to reign myself in when I'm ill is difficult to do.

Don't give up on writing because you're sick. Just keep on hanging on. You're the second writer I've come across and I'm beginning to wonder if Crohn's is more common among creative people.

Keep your chin up. You are young enough for a miracle to come along in the future.

Warmly,

Louann

 

[Fuzzy_griffon_cheeks]

Hello fellow writer! I have written three books through my illness with Crohn's so don't give up. I admit to being a type A personality so to reign myself in when I'm ill is difficult to do.

Don't give up on writing because you're sick. Just keep on hanging on. You're the second writer I've come across and I'm beginning to wonder if Crohn's is more common among creative people.

Keep your chin up. You are young enough for a miracle to come along in the future.

Warmly,

Louann

Well hey there Louann, ^_^

Don't worry about me not finishing anything I'm writing; this is a project that's been in the works for 12 years so it's not going to be forgotten. It's a very special book that I have to have at least 50% mental clarity to be working on as the topic is a delicate one of which is guided by God. I haven't even had the 50% that's needed.

For example: Last week I think sometime, I had gone in to go to the bathroom and as I'm sitting there trailing off in thought a moment, I look down and see the water is yellow and I think...wait...I don't remember going to the bathroom but I know I had to go. o,O That's pretty bad if I can't even remember if I peed or not, yet I had the evidence! LOL So it's those days I don't even bother to write. -__-

It's even harder to write when I get 1/4 of the amount of sleep I need because of neurological activity...which has been the case as of late (the passed several weeks especially though it's been most the year). If I'm already writing and getting beyond tired, that's one thing (thought it's bad XD) but if I'm already exhausted, I can't muster the mental strength to do so. It takes more energy than one realizes. So when I can't write, I brainstorm, and that's pretty much 24/7. *hehe*

Besides, if I stopped writing I'd have a whole list of people who would be knocking down my door in protest. They know how much work has gone into the book (hurts my head to think about how much), and being I'm writing it for the people, no way in crud am I gonna stop. And as weird as it sounds, the Crohn's in a way, is a type demented miracle being if not for the blasted disease, I wouldn't be able to work on my story as much as I have because I'd be working all the time. I can't work for immediate compensation so instead I work for belated compensation--at my own pace.

Besides it's just one more excuse for God to show his might and work his wonders. He's seen me through this far (haven't yet even posted my full story of Crohn's) so I know he'll continue to do so as he refines me through all these charming trials. But at least I know they're not in vain. It's much easier to get through the stupidness of this disease when knowing it's negative effects are for a greater purpose; refinement of character (and in my case, also greater dwelling and reliance on God). ^_^

((((hugs))))

~Elizabeth

 

[crazycanuck]

Hey there Im really sorry for your troubles and unfortunately no experience with pentasa but just wanted to stop in and say hi welcome to the forums and offer my support.

 

[Fuzzy_griffon_cheeks]

Hey there Im really sorry for your troubles and unfortunately no experience with pentasa but just wanted to stop in and say hi welcome to the forums and offer my support.

Hey crazycanuck! ~waves~

Sorry for such a long time in reply....I just have not been able to keep up with messages of any kind as time goes by. -__- I'm still sick with the whole Pentasa ordeal but I'm hoping things will change come maybe next week as I have a new doctor to see. MY husband's work decided to change insurance providers (stupid astronomical premium amounts) so switched to Keizer. ~sighs~ So now I'm hoping that maybe fresh eyes will be able to learn something if not be able to fix my on-going problem. =/ I'll post again soon with what all goes on as I know some here would probably like to know. I really should do an over all update as it is...come on butt, get yourself in gear! lol