Lots of stomach pain after switching meds

[Swirl]

So 3 weeks ago I got taken off Pentasa and put on Mesalamine Enema and Asacol. Last week I called my doctor and told him I've been feeling a lot of stomach pain during the day and all through the night. I told him it felt like it did when I came off Pentasa 3 times last year. He's thinking its the Asacol so he said to skip the last 3 pills. So I just take 3 pills twice a day. Been doing it for a week but still have lots of pain. Some gas too but everything else is normal now.

So what needs tp happen now is me going off Asacol and back on Pentasa right? I'm in a lot of pain that I can't sleep. I wake up every night in pain. I see combining pentasa and asacol has damaging side effects after doing a google search, is there other non steroid drugs I can take with Pentasa? I know the Mesalamine enema is temporary. If that's the drug that's making everything normal (remission almost), I know I'lll need another drug soon.
I'll be going back to Pentasa in the morning and calling up the doctor to let him know I need to go back to Pentasa and see if the pain goes away. I have 3 bottles of that left.
This colitis is painful.

 

[Rebecca85]

Just out of interest, why did you stop the Pentasa if it was working for you?

As far as I know, you can only take (orally) one of each kind of med at a time. Pentasa and Asacol are 5-asa meds. I think the only non-steroidal meds that could be taken with Pentasa are immune suppressants (eg azathioprine, 6-mp) or the biologics (humira, remicade, cimzia etc). All the 'mild' drugs are different types of 5-asa so can't be taken with the Pentasa.

 

[Swirl]

I was in a flair and already had a GI appointment. Haven't been to GI in around 6 months. Pentasa was the only drug I was on but needed something stronger that wasn't a steroid. I was also losing a good amount of blood and needed it stop. OK so I'm stuck with Pentasa it seems. Unless something kills off the pain and keeps me in remission.

 

[Fuzzy_griffon_cheeks]

I hate Crohn's.....it's so different for every person out there and every treatment works so differently as well. -__- From my raunchy experience with Pentasa and being that Asacol and a few others are all in that same category, I would say that it's the Asacol that's giving you all the pain (I have a feeling that I know of the kind of pain you're having and yeah it'll wake you up out of a dead sleep). Taking less won't fix the issue. Not taking it will. lol

Have you at all tried having ginger tea; making it straight from the root not the powder??? It's a natural anti-inflammatory, and many times for me it has soothed the fiery gut pain. I don't know if it would work for you as we're all different, but those natural sources of healing and/or pain relief, can be quite affective. And it's another means to find possible peace when all other man-made remedies fail battling the Crohn's.

 

[Swirl]

I took Pentasa for a few days afterward and it went away. Then i switch back to asacol because everything else went to hell lol. Now the pain is returning. I'm about to switch back to Pentasa and tell the doc once again. he had me take less asacol but no difference.

i try ginger tea but it doesnt help anymore. I try organic ginger tea and raw ginger root cut up and smash in hot water as a tea.
It does make my stomach feel a bit better but it doesn't take away all the pain.

I came off Pentasa 3 times last year and felt this same pain.
I'm also going through the process in trying a clinical drug that's hook up to the IV. Its some Bio drug. no steroid.

Pain is similar to a headache but in your stomach. after awhile, maybe a week. it hurts even more and lasts much longer.

You still have the pain now or is there a medication you're on that's helping?

 

[xJillx]

So, Swirl, it sounds like Pentasa is the drug you need to stick with. No more switching it up; you have found what works. And if you have a flare, add in the enemas until you are feeling better.

I hope your gut pain settles down soon.

 

[ameslouise]

Hey Swirl - I'm with Jill (as usual!) and it sounds like Pentasa is the key. I would really question your doc as to why he keeps saying you need to come off it if every time you do you have issues.

Hang in there -I hope you can stay on it and it continues to work for you!

-Ames

 

[Swirl]

Yeah I do need to stay with Pentasa. Last year I first took myself off Pentasa because I didn't notice any difference. I had flairups and I never notice it working. But then I notice it just worked for pain. And I also thought I had the side effects of that drug which is the same side effects as the disease. But it seems like Asacol is working for everything else. Last time I stopped asacol and started pentasa again I had another flairup but without pain. If I stay on Pentasa, I might always have to take the enema which I don't want to do.
I don't like these choices but the pain is horrible. But I'm also starting a clinical trial for a new drug through the IV and they just want me on Asacol. Been on Asacol since the end of April. Been off Enema for like 2 weeks except one day last week.

 

[Fuzzy_griffon_cheeks]

I took Pentasa for a few days afterward and it went away. Then i switch back to asacol because everything else went to hell lol. Now the pain is returning. I'm about to switch back to Pentasa and tell the doc once again. he had me take less asacol but no difference.

i try ginger tea but it doesnt help anymore. I try organic ginger tea and raw ginger root cut up and smash in hot water as a tea.
It does make my stomach feel a bit better but it doesn't take away all the pain.

I came off Pentasa 3 times last year and felt this same pain.
I'm also going through the process in trying a clinical drug that's hook up to the IV. Its some Bio drug. no steroid.

Pain is similar to a headache but in your stomach. after awhile, maybe a week. it hurts even more and lasts much longer.

You still have the pain now or is there a medication you're on that's helping?

I also noticed you mentioned that maybe you thought the Pentasa's side effects were like that of your symptoms.... That's is actually one of the side effects: a worsening of your condition. If you're in tune enough with your body you'll be able to tell what's natural, what's Crohn's, what purely medicine. I'm able to do this and while I was taking the Pentasa I discovered that it was in fact worsening my condition. Sadly...I'd gone through a full 250 count pill bottle and part of another 250 count bottle before realizing that it was actually the drug that was making me sicker. Though I write in a journal every day these issues, I didn't put two and two together till it was too late.

I was so focused on getting better and so emotional from seemingly getting worse over the month that I didn't notice even in my journal entries (yeah, figure that one out lol) that by day 6 of taking Pentasa, my condition was worsening and by day 9 I was in much greater over all pain than I was before taking it, though I still didn't correlate the two just yet (I wasn't supposed to for the time being). After (wow, just counted the days and it's way less than I thought it was @_@) taking the Pentasa for 23 days I couldn't do it a moment longer and stopped February 7th. I learned then a little over a month later after vomiting up an emulsified though preserved Pentasa that it was in fact that was the cause of my pain (body attacked it and hoarded it inside me).

Most of last year was coated in that dull to severe "headache in your stomach" but when eating, and always on Saturday's (Sabbath's for me), that ache would quickly change to a boiling bonfire much greater in magnitude than I ever thought was possible. I had that ache before the Pentasa but with the Pentasa, it just inhumanely amplified it. The pain would not only linger but it would pulsate as such and contract. -and heaven forbid I should have to have a BM because WWIII would then break out in my gut so violently, I'm surprised I'm still alive because I wanted to kill myself the pain would be so bad. >,O I hope you haven't experienced that level yet but if you have, know there's someone here who can sympathize. ^_^

Indeed, the ginger does help and then sometimes isn't enough. But I found last year that drinking aloe vera juice to help with the pain would sometimes knock it out on the first gulp. It seemed to be stronger than the ginger though I really think our bodies--rather the Crohn's--takes notions as to what its going to decide will work and what won't. But the aloe for me was awesome and I drank it straight, not mixed with anything. I also found that quinoa (a grain) was soothing (it felt creamy in my stomach though it's not creamy lol) and antioxidant fruits as well made into a fruit soup.

I so hope you get to feeling better soon though... I don't have any med right now that's helping me (though I'm on Entocort and tapering off Prednisone) because anything that's administered is trounced by the effects of the Pentasa. The Pentasa has to be removed first for any sort of treatment to work. If not for that, I'm treatable with Prednisone and Entocort, as well as homeopathic "drugs" (my homeopathy doc calls it nutrition), but the natural supplements she gives me are reeeeeeeeeaaaallly expensive as insurance companies don't recognize homeopathy as a legitimate medical practice, so I have to pay for that out of pocket and I'm not made of money.

There is one thing I know that has worked for my pain and it's hard to do, but attainable. For me it's not thinking about me when the pain happens but instead thinking about what I can do for others, how I can help them and make them feel better (i.e. show them God's love and character). I've silenced violent pain and tears by picking up my laptop while in a bout of pain that always doubles me over, and responded with encouragement to a friend's ordeal: almost immediately the pain stopped. Sometimes it doesn't always stop but will lesson to manageable; I can do manageable. But I know this won't work for everyone.

So before this gets any longer (this is ridiculous in length--sorry! >,<) I'll cease my rambling and let you respond. :biggrin: Hopefully some of this is useful though.*hehe*

 

[Swirl]

OK thanks for that. Keeping a journal would be so helpful but I

still fail to do that.

I never had the pain I felt before I was ever on Pentasa. But

my condition was getting worst before I was on medication.
I experience the wanting to kill myself because the pain was

too much. It's like something cutting my insides.
My brother was capable of doing that and did it. He dealt with

chronic back pain from a broken back he suffer years ago and

the painkillers wasn't much help.

I still have yet to try Aloe Vera juice. I read about it a lot

but never remember to get it.

Whenever I feel that sharp pain, I can't do anything but lay on

my bed and roll around.

The mind over pain I believe can be very helpful, I know

there's people that practice this and are able to go through

great physical pain. But when I get in uncomfortable

situations, its hard to stay positive. That's something I'm

still unable to do and is the only time I question the man

upstairs, medications and everything else.

I don't want to rely on medications, and I don't think medication will always work. I especially hate how its hard to know if its the medication that's making me sick or not. After this clinical trial, I'll only continue to try Asacol or Lialda. I felt awful being on Presnisone after the second or third week on it.

I wonder if this is a disease where you'll always have issues. Everybody usually have other issues with IBD. I got reminded of that from my last doctor last week.

So I really don't know if Pentasa is good or not for me. I just took 2 500mg at night when I felt awful, but only after 4 or 5 hours of asacol because I think Asacol is helping with everything else. Pain seem to have gone away.
It seems like the longer you're on a drug the worst off you are when you come off it.
Less drugs the better.

 

[Swirl]

Ok i brought Aloe Vera Juice from CVS, its made so it doesn't smell much or taste that awful. Stomach started hurting like always around dinner time so i drank 4oz then another 4oz and the pain went away. I don't know for how long this will work but for now everything is good.

 

[Fuzzy_griffon_cheeks]

Stomach started hurting like always around dinner time so i drank 4oz then another 4oz and the pain went away. I don't know for how long this will work but for now everything is good.

Oh I am so glad that aloe works for you!!!! I'm just ecstatic!!! That is AWESOME! :hug::kiss: ~dances excitedly~ It's definitely a surreal feeling taking one big drink and feeling the pain just melt away. ^_^ I had to drink it even while I ate just to keep the pain at bay. :tongue: Although that's interesting your pain presents itself always around dinner--so that's evening/late afternoon??? My pain always had an on set anywhere from 3 pm to about 5 pm; normally about at 4:30/5pm. Sometimes I'd wake with the pain in the morning so breakfast would sometimes suck. XD Just keep drinking it I guess till it stops working, or if it even does! Hopefully it wont. ~crosses fingers~

And if the pain you feel wasn't there before the Pentasa, then yeah, that SO has to be what's causing it. >,O I never had pain like that before Pentasa either so within this last year and a half I finally know what "Crohn's pain" is. I also never could roll around on my bed or the couch as every movement was beyond description it was so bad, although in truth, once the pain hit me, I was paralyzed so it didn't matter. lol All I'd do was just lay there screaming randomly as sharp contracting pains hit me and shook violently. I don't miss that. @_@

Indeed it can be very hard to stay positive unless you have a meaningful reason. It's also good to question, just don't give up hope. You'll still have your moments of despair (I do), but I know my pain, trials and struggles isn't in vain: If not for what I've been through since last January, I would not be able to now sing and still be happy while having an episode. God rewired my focus and my direction. And what's even better is that because of my illness's trials, it's helped to shape not only my character to what it is now, but my husband's character as well; into what I always knew was there. It took seeing me in this condition for him to not only come out of himself more (being more attentive and the likes) but be humbled (and me too for that matter). I have people tell me that because of what I go through and how strong they see me, that I give them hope for their own battles. Right there, that makes it all worth it.

It's as my signature says: "I may carry a cross that would seem unfair to many, but with God's grace I accept it; for I am burdened so as to teach and encourage others through my suffering. That is my lot." And through my trials, I was even able to help you with suggesting the aloe! So my Crohn's isn't in vain. Sucks to have it yes, but in some twisted way, it's made me better character wise, and that I wouldn't change. ^_^

And YES!!!! @_______@ The less drugs the better! -Amen!!! My body is kinda getting to the point where it wants nothing to do with any drug, natural or prescribed; it just wants a rest and I don't blame it. lol I need a rest! ~falls over~

Yes this is one disease that you'll always have issues with as it will flare here and there and when you don't want it to...which is at any time. lol I also don't blame you for not wanting to rely on the meds as they can only work just so much before the seem to just not work any more. Humility I think is one of the best psychological drugs for this disease as where your mind is focused while battling Crohn's is everything. We (Crohn's patients) react to stress 300 times greater than someone who doesn't have it so we definitely have to watch where our mental state starts to head.

We'll get through it somehow or another, and just remember to take it one day at a time and hope for the best. Find a healing outlet with a hobby and lose yourself in it for a few hours each day, anything to help the stress and find peace. Are you still having good luck with the aloe juice? I hope and pray you are!:hug:

 

[Swirl]

Yes I've been drinking it everyday, it makes my stomach feel normal. I can continue to take Asacol for everything else now and not worry about Pentasa for the pain.

Usually after about five minutes or so my stomach starts to feel better.
I brought 1 gallon of it.

I get this slight pain in the morning but its the type you feel a bit but can manage to do anything and not have it stop you. I feel ok by the Afternoon. The worst one

usually starts around 5,6, or 7pm. I had this since a year after I had UC problems. It sure isn't because of dinner since it happens before and after it.

I would think some drugs make it hard to come off on purpose.
I did used to think this is how so many people continue to take the same drugs.
That really awful pain you felt is horrible. It feels like the biggest needle.

You're right. It can really help shape someone's character. For something so serious and personal as this, It seems as if it can truely build you up as a person.
I like the teaching and encouraging of others through my suffering part. That's how people bring up their kids. You make sure they knew your mistakes growing up or
they'll repeat.

I seriously need to look at a career in health. Doing research about these stuff and helping others feels great.
Now I can see how people can enjoy their work.

I so badly want a violin. Electric and Acoustic one. I plan to lose myself with that soon. Nothing more relaxing then violin music.

Oh I went for this colonoscopy type of exam today. It was about 10 minutes. I seen the ulcers on the videocam monitor. The doctor said that its just in the

rectum/anus part area. He gave it a 2 out of a 4 or 5. 0 being normal. I don't know why I receive pain in my stomach. It should hurt in my butt only! lol He took a

couple of samples. Cut part of the colon out for testing. The colon looks like a sponge. Some ulcers were white and others pink like it was bleeding. My Hemoglobin level was 10.5 hasn't change since November so I must also try iron from the IV since the pills makes me throwup.

 

[Fuzzy_griffon_cheeks]

Oh I deeply apologize for taking so long to respond, too much life and too many demands. ~falls over~ ...and kind of a wedding I'm helping with (yeah that's time consuming) but that craziness thankfully will be over with after the 3rd of next month. :yrolleyes: So anyway...

How are you doing anyway? Are you still using the aloe and is it even still working?

I hate the fact that there's just very few options for treatment for Crohn's/colitis, it's totally not fair. -_____- But, there is something that I ran across I think 2 weeks ago that apparently farmers and painters use all the time to clean their systems out of pesticides, harmful chemicals and whatnot which I tried for myself. My husband bought some of this stuff called bentonite and took some because he was quite ill from some wickedly evil chemicals in paint he was spraying at work. Well he took the stuff and immediately did a 180 where his illness and energy was concerned. He was quite perky after taking it.

I took it (and boy was it doing some trippy stuff to my energy field @_@) and wow....it pretty much felt like I had no flare up, no Pentasa still stuck in me, no ailment, no burden whatsoever. The stuff is incredible. I only took it twice and am waiting to take it again till after I see a doctor come the 1st of next month as with this stuff sucking out ALL bad impurities from the body, it confused my body that there wasn't any Pentasa there anymore, though there is.

But aside from that, Kyle (hubby) did some searching on the interwebz, and ran across someone with colitis who had used this bentonite stuff with psyllium husks (the husks can come in powdered form) and it apparently sent her into remission. I looked it up and wiki mentioned that it can do that with irritable bowel syndrome as well as stop diarrhea and a host of other things.

So ya know....if you're still having issues, maybe try bentonite (a volcanic liquid grey clay--or liquid grey black hole lol) by itself or maybe the bentonite with the psyllium. Though do your homework on the psyllium first, you need lots of water with it, as it, like the clay, will suck you dry but also can make you choke if you don't have enough water, so drink like a horse with it. lol I'd like to get some [psyllium] once my Pentasa issue is over with as purifying my system with that junk still in me doesn't really help me in the over all grand scheme of things. XD *hehe*

So anyway, I hope and pray you're maybe a little better considering the fiery ache I know you've been battling. :hug: