Hi Memory. I am hoping to talk to you about your drug adverse effects. I was on Sulphasalazine and ended up with severe abdominal pain - I am now into 3 weeks after stopping the drug but am having a very severe flare up of the CC - with sensations that seem to me to still be related to the drug. I believe it did worsen things. If you're out there please respond. I'd like to know if you still have anything about your flare up that you feel is still related to or caused by the drug.
Mia
Memory- if you ar out there please read.
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a bit more to add
Memory- I have a lot of your same sensations. I have been doing a lot of reading about both sulphasalazine and it's counterpart Asacol- I found some abstracts where studies showed that both altered the microflora in the gut- in some instances ushering in c difficile, among other 'bad' bacterial overgrowths. I keep wondering if this is what happened to me. You may want to check out the fibrosing lesions that can happen on various organs as another side effect of these drugs too. The pancreas is one of those organs mentioned.
I see a doctor on Monday, and I'm bringing in print outs about all of these side effects to discuss with him- I had such a bad experience with the abdominal pain on that drug, that I've been scared ever since.
Mia
I see a doctor on Monday, and I'm bringing in print outs about all of these side effects to discuss with him- I had such a bad experience with the abdominal pain on that drug, that I've been scared ever since.
Mia
Hi Mia,
I have CC, but recently had a several month reprieve from all symptoms, no pain, no bloating, no diarrhea, no problems at all ( and I was eating anything I wanted, I wasnt on any type of diet ....I was taking pepto bismol caplets a couple times a day and a probiotic in the morning when this "miracle" occured ). Dont know if the probiotic and pepto was the reason for the reprieve or just a coincidence, because just out of no where one day I started being uncomfortale with a bit of a bloating feeling, so at a routine ck up I mentioned it to my family DR, she told me to go back to my GI DR...he gave me samples of Asacol and a RX to have filled.
I took the samples for a week and got sick as a dog, the diarrhea had returned with a vengence and it was many times a day...BUT the abdominal bloating and pain were the worst...worse than they have ever been, so I stopped the Asacol for several days to see if it was actually the drug making me worse or if my 'flare up' was just that bad...I decided to give Asacol one more try before I gave up so I had the RX filled ( thinking I hadnt given it enough time to work ... what a waste of money ) ... I took it for 2 days and finally just couldnt stand the pain anymore...I was having cramps and and was hurting so bad ( like never before in the entire 7 yrs I have had CC... it was so horrile that my husband was dressed at midnight one night and ready to take me to the hosp if I could have gotten off the floor due to the screaming pain I was in
) ... I then knew it was the Asacol...I told my GI DR I was not going to take it as I thought it was making me worse... he said " Yes, Asacol can exacerbate your issues " !! I have never had pain like that in my life !! I told him Asacol was evil and the drug from hell ...lol
I am sure it is fine for some ppl and causes no problems BUT I personally would never take another one of those pills...it just doesnt agree with me at all.
After stopping the Asacol I stared taking 2 entocort in the mornings, the diarrhea was gone in 2 days, the pain had stopped, the bloating is much improved but not totally gone ( I know it hasnt been long enough for the Entocort to entirely do its job )...however I was told by my GI Dr 2 yrs ago even with entocort there may still be bloating issues no matter what, BUT the severe pain caused by Asacol is gone, and I agree with you Asacol scares me to death !!
I did read while researching pancreatic cysts that they are not uncommon with colon disorders...I hope when I am re-tested in Feb the cyst is gone ( 6 mos is along time to wait I think, but I suppose it might take that long to see if it is going to change or disappear )...kinda makes me nervous...lol
Have you tried entocort for the CC symptoms ? In my past experience it helped while I took it BUT returned once the course of treatment was stopped...I am going to call my GI DR to ask if I can use entocort as a 'maintanence drug'...entocort does have some undesirable side effects for me, BUT at least I am not rushing to the bathroom a dozen times a day and am relatively painfree...so...it seems many ppl with CC. LC, MC etc.. are just caught between an rock and a hard spot...give 'ya one thing to help and it either makes things worse or causes side effects and other issues
You might want to mention entocort to your Dr when you go Mon and ask if it may help you with the CC...and please let me know what the Dr advises and what you decide to do...good luck, I hope you get some relief soon ....
Memory
I have CC, but recently had a several month reprieve from all symptoms, no pain, no bloating, no diarrhea, no problems at all ( and I was eating anything I wanted, I wasnt on any type of diet ....I was taking pepto bismol caplets a couple times a day and a probiotic in the morning when this "miracle" occured ). Dont know if the probiotic and pepto was the reason for the reprieve or just a coincidence, because just out of no where one day I started being uncomfortale with a bit of a bloating feeling, so at a routine ck up I mentioned it to my family DR, she told me to go back to my GI DR...he gave me samples of Asacol and a RX to have filled.
I took the samples for a week and got sick as a dog, the diarrhea had returned with a vengence and it was many times a day...BUT the abdominal bloating and pain were the worst...worse than they have ever been, so I stopped the Asacol for several days to see if it was actually the drug making me worse or if my 'flare up' was just that bad...I decided to give Asacol one more try before I gave up so I had the RX filled ( thinking I hadnt given it enough time to work ... what a waste of money ) ... I took it for 2 days and finally just couldnt stand the pain anymore...I was having cramps and and was hurting so bad ( like never before in the entire 7 yrs I have had CC... it was so horrile that my husband was dressed at midnight one night and ready to take me to the hosp if I could have gotten off the floor due to the screaming pain I was in
) ... I then knew it was the Asacol...I told my GI DR I was not going to take it as I thought it was making me worse... he said " Yes, Asacol can exacerbate your issues " !! I have never had pain like that in my life !! I told him Asacol was evil and the drug from hell ...lolI am sure it is fine for some ppl and causes no problems BUT I personally would never take another one of those pills...it just doesnt agree with me at all.
After stopping the Asacol I stared taking 2 entocort in the mornings, the diarrhea was gone in 2 days, the pain had stopped, the bloating is much improved but not totally gone ( I know it hasnt been long enough for the Entocort to entirely do its job )...however I was told by my GI Dr 2 yrs ago even with entocort there may still be bloating issues no matter what, BUT the severe pain caused by Asacol is gone, and I agree with you Asacol scares me to death !!
I did read while researching pancreatic cysts that they are not uncommon with colon disorders...I hope when I am re-tested in Feb the cyst is gone ( 6 mos is along time to wait I think, but I suppose it might take that long to see if it is going to change or disappear )...kinda makes me nervous...lol
Have you tried entocort for the CC symptoms ? In my past experience it helped while I took it BUT returned once the course of treatment was stopped...I am going to call my GI DR to ask if I can use entocort as a 'maintanence drug'...entocort does have some undesirable side effects for me, BUT at least I am not rushing to the bathroom a dozen times a day and am relatively painfree...so...it seems many ppl with CC. LC, MC etc.. are just caught between an rock and a hard spot...give 'ya one thing to help and it either makes things worse or causes side effects and other issues
You might want to mention entocort to your Dr when you go Mon and ask if it may help you with the CC...and please let me know what the Dr advises and what you decide to do...good luck, I hope you get some relief soon ....
Memory
Hi Memory.
I think we had quite similar responses. I too had severe stomach pain- it lasted about two hours, and then subsided, but fololwed with severe dyspepsia- bad bloating, nausea, gas, heartburn, cramping of a kind I haven't felt before, and 'anorexia'- that's what they call it- not like little girls who refuse to eat- but where I couldn't eat. Then when those symptoms subsided somewhat (though not entirely yet), I began a huge flare up which I'm still in. The big D MANY times a day- and at night too. I may ask about the Entocort tomorrow, but I'm even feeling a bit afraid of that.
Now- most of the pages I printed out were the sulphasalazine ones, but I'll try to do a link here to some that refer to Asacol. I'm NOT very good with a computer, so I not sure how to insert a link here. If I fail, I'll add the http addresses for you and the page titles so at least you may find it by googling.http://www.drugs.com/sfx/asacol-aide-effects.html
http://www.annals.org/content/110/6/490.extract
Ok- I probably did it wrong so here's some to google too:
Drug Information Online Drugs.com asacol side effects
MedHelp Gastroenterology Asacol adverse effects pancreatitis
eHealthMe Real World Drug Outcomes [url]http://www.ehealth.com/drug/asacol
Ok If I didn't do the Links right maybe some kind member will explain how to do it, and then I'll retry. (Anyone?)
I'll check back later Memory.
Mia
I think we had quite similar responses. I too had severe stomach pain- it lasted about two hours, and then subsided, but fololwed with severe dyspepsia- bad bloating, nausea, gas, heartburn, cramping of a kind I haven't felt before, and 'anorexia'- that's what they call it- not like little girls who refuse to eat- but where I couldn't eat. Then when those symptoms subsided somewhat (though not entirely yet), I began a huge flare up which I'm still in. The big D MANY times a day- and at night too. I may ask about the Entocort tomorrow, but I'm even feeling a bit afraid of that.
Now- most of the pages I printed out were the sulphasalazine ones, but I'll try to do a link here to some that refer to Asacol. I'm NOT very good with a computer, so I not sure how to insert a link here. If I fail, I'll add the http addresses for you and the page titles so at least you may find it by googling.http://www.drugs.com/sfx/asacol-aide-effects.html
http://www.annals.org/content/110/6/490.extract
Ok- I probably did it wrong so here's some to google too:
Drug Information Online Drugs.com asacol side effects
MedHelp Gastroenterology Asacol adverse effects pancreatitis
eHealthMe Real World Drug Outcomes [url]http://www.ehealth.com/drug/asacol
Ok If I didn't do the Links right maybe some kind member will explain how to do it, and then I'll retry. (Anyone?)
I'll check back later Memory.
Mia
Hi Memory.
I think we had quite similar responses. I too had severe stomach pain- it lasted about two hours, and then subsided, but fololwed with severe dyspepsia- bad bloating, nausea, gas, heartburn, cramping of a kind I haven't felt before, and 'anorexia'- that's what they call it- not like little girls who refuse to eat- but where I couldn't eat. Then when those symptoms subsided somewhat (though not entirely yet), I began a huge flare up which I'm still in. The big D MANY times a day- and at night too. I may ask about the Entocort tomorrow, but I'm even feeling a bit afraid of that.
Now- most of the pages I printed out were the sulphasalazine ones, but I'll try to do a link here to some that refer to Asacol. I'm NOT very good with a computer, so I not sure how to insert a link here. If I fail, I'll add the http addresses for you and the page titles so at least you may find it by googling.
http://www.drugs.com/sfx/asacol-aide-effects.html
http://www.annals.org/content/110/6/490.extract
Ok- I probably did it wrong so here's some to google too:
Drug Information Online Drugs.com asacol side effects
MedHelp Gastroenterology Asacol adverse effects pancreatitis
eHealthMe Real World Drug Outcomes
http://www.ehealth.com/drug/asacol
Ok If I didn't do the Links right maybe some kind member will explain how to do it, and then I'll retry. (Anyone?)
I'll check back later Memory.
Mia
I think we had quite similar responses. I too had severe stomach pain- it lasted about two hours, and then subsided, but fololwed with severe dyspepsia- bad bloating, nausea, gas, heartburn, cramping of a kind I haven't felt before, and 'anorexia'- that's what they call it- not like little girls who refuse to eat- but where I couldn't eat. Then when those symptoms subsided somewhat (though not entirely yet), I began a huge flare up which I'm still in. The big D MANY times a day- and at night too. I may ask about the Entocort tomorrow, but I'm even feeling a bit afraid of that.
Now- most of the pages I printed out were the sulphasalazine ones, but I'll try to do a link here to some that refer to Asacol. I'm NOT very good with a computer, so I not sure how to insert a link here. If I fail, I'll add the http addresses for you and the page titles so at least you may find it by googling.
http://www.drugs.com/sfx/asacol-aide-effects.html
http://www.annals.org/content/110/6/490.extract
Ok- I probably did it wrong so here's some to google too:
Drug Information Online Drugs.com asacol side effects
MedHelp Gastroenterology Asacol adverse effects pancreatitis
eHealthMe Real World Drug Outcomes
http://www.ehealth.com/drug/asacol
Ok If I didn't do the Links right maybe some kind member will explain how to do it, and then I'll retry. (Anyone?)
I'll check back later Memory.
Mia
Hi Memory.
I think we had quite similar responses. I too had severe stomach pain- it lasted about two hours, and then subsided, but fololwed with severe dyspepsia- bad bloating, nausea, gas, heartburn, cramping of a kind I haven't felt before, and 'anorexia'- that's what they call it- not like little girls who refuse to eat- but where I couldn't eat. Then when those symptoms subsided somewhat (though not entirely yet), I began a huge flare up which I'm still in. The big D MANY times a day- and at night too. I may ask about the Entocort tomorrow, but I'm even feeling a bit afraid of that.
Now- most of the pages I printed out were the sulphasalazine ones, but I'll try to do a link here to some that refer to Asacol. I'm NOT very good with a computer, so I not sure how to insert a link here. If I fail, I'll add the http addresses for you and the page titles so at least you may find it by googling.http://www.drugs.com/sfx/asacol-aide-effects.html
http://www.annals.org/content/110/6/490.extract
Ok- I probably did it wrong so here's some to google too:
Drug Information Online Drugs.com asacol side effects
MedHelp Gastroenterology Asacol adverse effects pancreatitis
eHealthMe Real World Drug Outcomes [url]http://www.ehealth.com/drug/asacol
Ok If I didn't do the Links right maybe some kind member will explain how to do it, and then I'll retry. (Anyone?)
I'll check back later Memory.
Mia
I think we had quite similar responses. I too had severe stomach pain- it lasted about two hours, and then subsided, but fololwed with severe dyspepsia- bad bloating, nausea, gas, heartburn, cramping of a kind I haven't felt before, and 'anorexia'- that's what they call it- not like little girls who refuse to eat- but where I couldn't eat. Then when those symptoms subsided somewhat (though not entirely yet), I began a huge flare up which I'm still in. The big D MANY times a day- and at night too. I may ask about the Entocort tomorrow, but I'm even feeling a bit afraid of that.
Now- most of the pages I printed out were the sulphasalazine ones, but I'll try to do a link here to some that refer to Asacol. I'm NOT very good with a computer, so I not sure how to insert a link here. If I fail, I'll add the http addresses for you and the page titles so at least you may find it by googling.http://www.drugs.com/sfx/asacol-aide-effects.html
http://www.annals.org/content/110/6/490.extract
Ok- I probably did it wrong so here's some to google too:
Drug Information Online Drugs.com asacol side effects
MedHelp Gastroenterology Asacol adverse effects pancreatitis
eHealthMe Real World Drug Outcomes [url]http://www.ehealth.com/drug/asacol
Ok If I didn't do the Links right maybe some kind member will explain how to do it, and then I'll retry. (Anyone?)
I'll check back later Memory.
Mia
ok my links and message didn't work. Sorry :(
Hi Memory.
I think we had quite similar responses. I too had severe stomach pain- it lasted about two hours, and then subsided, but fololwed with severe dyspepsia- bad bloating, nausea, gas, heartburn, cramping of a kind I haven't felt before, and 'anorexia'- that's what they call it- not like little girls who refuse to eat- but where I couldn't eat. Then when those symptoms subsided somewhat (though not entirely yet), I began a huge flare up which I'm still in. The big D MANY times a day- and at night too. I may ask about the Entocort tomorrow, but I'm even feeling a bit afraid of that.
Now- most of the pages I printed out were the sulphasalazine ones, but I'll try to do a link here to some that refer to Asacol. I'm NOT very good with a computer, so I not sure how to insert a link here. If I fail, I'll add the http addresses for you and the page titles so at least you may find it by googling.
Ok- I did it wrong so here's some to google :
Drug Information Online Drugs.com asacol side effects
MedHelp Gastroenterology Asacol adverse effects pancreatitis
eHealthMe Real World Drug Outcomes
I couldn't do the links right. Maybe some kind member will tell me how to do it, then I can put in some. (anyone?)
Sorry about my mess ups there.
I'll check back later Memory.
Mia
I think we had quite similar responses. I too had severe stomach pain- it lasted about two hours, and then subsided, but fololwed with severe dyspepsia- bad bloating, nausea, gas, heartburn, cramping of a kind I haven't felt before, and 'anorexia'- that's what they call it- not like little girls who refuse to eat- but where I couldn't eat. Then when those symptoms subsided somewhat (though not entirely yet), I began a huge flare up which I'm still in. The big D MANY times a day- and at night too. I may ask about the Entocort tomorrow, but I'm even feeling a bit afraid of that.
Now- most of the pages I printed out were the sulphasalazine ones, but I'll try to do a link here to some that refer to Asacol. I'm NOT very good with a computer, so I not sure how to insert a link here. If I fail, I'll add the http addresses for you and the page titles so at least you may find it by googling.
Ok- I did it wrong so here's some to google :
Drug Information Online Drugs.com asacol side effects
MedHelp Gastroenterology Asacol adverse effects pancreatitis
eHealthMe Real World Drug Outcomes
I couldn't do the links right. Maybe some kind member will tell me how to do it, then I can put in some. (anyone?)
Sorry about my mess ups there.
I'll check back later Memory.
Mia
Mia....thanks for the info, I will google those and ck'em out.
I understand how you feel about taking Entocort, I dont like to take it either, but I am willing to if it helps and gives me some relief...I have a issue with some of the side effects ( mostly worry about them I suppose as to them actually being serious )....the one I have the most trouble with is that it MAY lower the immune system ( going to try supplementing with Vit D to boost immunity ).
I know a little over a week ago I was in the midst of a horrible flare up ( made worse as I said with the Asacol )...and I would have drank turpentine if someone had told me it would stop that awful pain...lol...the Entocort has given me some big time relief...I hope you will talk to your Dr about Entocort, maybe he/she can help you feel better about taking it...keep me posted please.
Memory
I understand how you feel about taking Entocort, I dont like to take it either, but I am willing to if it helps and gives me some relief...I have a issue with some of the side effects ( mostly worry about them I suppose as to them actually being serious )....the one I have the most trouble with is that it MAY lower the immune system ( going to try supplementing with Vit D to boost immunity ).
I know a little over a week ago I was in the midst of a horrible flare up ( made worse as I said with the Asacol )...and I would have drank turpentine if someone had told me it would stop that awful pain...lol...the Entocort has given me some big time relief...I hope you will talk to your Dr about Entocort, maybe he/she can help you feel better about taking it...keep me posted please.
Memory
Hi Memory. I see my doctor tomorrow, so I'll certainly discuss it. My main problem right now is that I'm worrying about what is still wrong since taking the sulphasalazine. It's been over 3 weeks now since stopping the drug, and I still feel 'different' with this flare up - I have upper and mid abdominal crampy feelings, and still some nausea, that still haven't gone (these were never issues in all of my 10 years with collagenous colitis), so I keep worrying that something more concerning has resulted from the drug. I feel ok sometimes and think it's passed until I feel bad again. In any case- this flare is certainly a bad one.
I'm glad to hear you are on the way to feeling better.
Mia
I'm glad to hear you are on the way to feeling better.
Mia
Hi Ant,
Yeah I know the dosage is supose to be 3 entocort a day ( I have taken it before, a couple of yrs ago I took the prescribed 3 a day for 16 weeks )...I just recently started taking it again due to my recent flare up, I figured if 2 a day will make me feel better than why take the 3 until I dis-cuss resuming the treatment with my GI Dr ( i just was in such pain I had to take something and my Dr was on vacation last week, I could have talked to one of his associates but I want to talk directly to him since I am his patient ). I was never put on a diet, I was tested by blood and biopsy for food intolerances, however I am going to consult with him again on the diet maybe being a necessity...I plan to call him this week ...
Mia,
How long did you take the Asacol ? Did the increased symptoms start right away or did it take awhile ? I know for me I was in pain the first day I took it and for the entire 2 weeks that I was on it, with the awful side effects becoming exacerbated more each day. I dont really know how long it would have been for me to feel relief after stopping the Asacol as I started with the Entocort about 3 days after dicontinuing the Asacol...it took 2 days on the entocort for some of the symptoms to subside a bit.
Memory
Yeah I know the dosage is supose to be 3 entocort a day ( I have taken it before, a couple of yrs ago I took the prescribed 3 a day for 16 weeks )...I just recently started taking it again due to my recent flare up, I figured if 2 a day will make me feel better than why take the 3 until I dis-cuss resuming the treatment with my GI Dr ( i just was in such pain I had to take something and my Dr was on vacation last week, I could have talked to one of his associates but I want to talk directly to him since I am his patient ). I was never put on a diet, I was tested by blood and biopsy for food intolerances, however I am going to consult with him again on the diet maybe being a necessity...I plan to call him this week ...
Mia,
How long did you take the Asacol ? Did the increased symptoms start right away or did it take awhile ? I know for me I was in pain the first day I took it and for the entire 2 weeks that I was on it, with the awful side effects becoming exacerbated more each day. I dont really know how long it would have been for me to feel relief after stopping the Asacol as I started with the Entocort about 3 days after dicontinuing the Asacol...it took 2 days on the entocort for some of the symptoms to subside a bit.
Memory
Mia,
I'm sorry that I wasn't around to help yesterday, but I had to work, unfortunately. If you will look back at your 4th post in this thread, (post number 6, counting Memory's posts), I corrected the problem in that one. If you will click on the "Edit" button at the upper right corner of your post, you can see what I did - all I did was to take out the "URL" tag that you had added in front of those link addresses. You don't need to add them, because the system will automatically convert URLs into live links. If you add the "URL" tag, though, it confuses the php interpreter in most browsers, so that's why we couldn't see your text - our browsers didn't know how to display the text, because that "URL" tag, (in combination with the brackets that enclosed the tag in your text), is a php command, which confused the code interpreters built into the browsers.
Tex
I'm sorry that I wasn't around to help yesterday, but I had to work, unfortunately. If you will look back at your 4th post in this thread, (post number 6, counting Memory's posts), I corrected the problem in that one. If you will click on the "Edit" button at the upper right corner of your post, you can see what I did - all I did was to take out the "URL" tag that you had added in front of those link addresses. You don't need to add them, because the system will automatically convert URLs into live links. If you add the "URL" tag, though, it confuses the php interpreter in most browsers, so that's why we couldn't see your text - our browsers didn't know how to display the text, because that "URL" tag, (in combination with the brackets that enclosed the tag in your text), is a php command, which confused the code interpreters built into the browsers.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.