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Asacol & left sided colitis

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Posted 2/10/2008 1:49 AM (GMT 0)
Any input on this would be appreciated........I started out with lower left sided colitis around 27 years ago.  Was on Azulfidine for many, many years.  Had a very long remission.  Stopped taking the Azulfidine.  In the past year and a half I started a real good flare again.  This time I am with a new GI.  She put me on Asacol, 9 pills a day.  I was finding that at least 3 of these were not dissolving each day, plus I was not seeing any improvement. My last colonoscopy showed that the colitis now involves 3/4 of my colon instead of it being "lower left sided" like it was when I was first diagnosed.  I asked my GI to put me on the Azulfidine.  I just started my 3rd month of the Azulfidine, also taking probiotics for the past month and mesalamine enemas every other night (down from every night).  I hope I don't jinx myself by saying this, but I have seen a very large improvement over the past week.  (keeping my fingers crossed)  A friend of mine has Crohn's and she told mer that her GI said that Asacol is not for people with left sided UC.  Maybe that's why it wasn't doing anything for me??  Anyone ever hear that theory?
Posted 2/10/2008 2:11 AM (GMT 0)
My GI has pretty much said the same thing. He said that sometimes the Asacol sometimes don't dissolve properly to help the left side. And that is why he switched me to Colazal which has a better chance of helping with people with left sided.
Posted 2/10/2008 2:16 AM (GMT 0)
thanks Red, interesting.
Posted 2/10/2008 4:09 AM (GMT 0)

I take asacol 800 mg x 6 daily.  I haven't had a lot of success with it in the last 5 years although until 4 mths ago I was taking only the 400 mg x 8 daily.  My doctor explained that, I am prescribed this med mostly to avoid the disease spreading any further up the colon.  But chances of it reaching the affected area, are slim.  That is the reason why he also prescribed the salofalk (mesalamine) enema, and suppositories. These rectal forms of the same med, should be more beneficial in reducing my symptoms as it is reaching exactly where the inflamation is.  Hope this helps you.

I havent figured out how to post my signature yet..lol  not very good with puters.

Tipoil..Dx 1987 = UC

Posted 2/10/2008 4:44 AM (GMT 0)
Tipoil, click on "Control Panel" at the top of the board, then click on "Edit Profile." The last entry on that page will be where you can compose your signature. Just type what you want (ten lines or less) and click on "Submit" at the bottom.

And welcome to HealingWell.
Posted 2/12/2008 3:14 AM (GMT 0)
Wow, now I'm TOTALLY confused. I have a similar story, dianosed 25 yrs. ago, took high doses of Pred and Azul then weaned off the Pred, took just the Azul, then in remissionn for the past 9 yrs. Then out of the blue I started bleeding and flaring. It was so weird, I though it was hems becasue I had taken Codine cough syrup and was constipated for a couple days. The Prep H didn't work so went to the GI doc and he said it was the UC and did a colonoscopy to confirm. I'm now on Asacol and then he added 20 Preds and the bleeding stopped. Last Thurs. he said I should stay on the Pred for one more month and then we would start a decline. He said I should stay on the Asacol for the rest of my life. Before the Pred was added I asked him to put me on Azul because it had worked so well before. He said Asacol was the same drug without the sulfa and that the sulfa causes bone marrow suppression. Soooo - I took his advice and stayed on the Asacol and then the Pred was added. Should I get a second opinion?

Posted 2/12/2008 7:41 AM (GMT 0)
Hi...you should be on rectal meds....I can't see why the pred was added.
Since you're on it and should soon be off it...do still consider to add the rectal meds.

We do talk about it often here....and I think a second opinion would possibly be a good idea.

Do your homework and learn about the meds used for UC...both oral and rectal..5ASAs....steroids, oral steroids and the immunosuppressants and biologics.

quincy
Posted 2/12/2008 4:59 PM (GMT 0)
Q - I asked my doc about rectal meds after reading about them on this forum and he said since I have LS they wouldn't go up enough to do anything. He said they are only for rectal problems.

Posted 2/12/2008 5:19 PM (GMT 0)

munchkindd said...
Any input on this would be appreciated........I started out with lower left sided colitis around 27 years ago.  Was on Azulfidine for many, many years.  Had a very long remission.  Stopped taking the Azulfidine.  In the past year and a half I started a real good flare again.  This time I am with a new GI.  She put me on Asacol, 9 pills a day.  I was finding that at least 3 of these were not dissolving each day, plus I was not seeing any improvement. My last colonoscopy showed that the colitis now involves 3/4 of my colon instead of it being "lower left sided" like it was when I was first diagnosed.  I asked my GI to put me on the Azulfidine.  I just started my 3rd month of the Azulfidine, also taking probiotics for the past month and mesalamine enemas every other night (down from every night).  I hope I don't jinx myself by saying this, but I have seen a very large improvement over the past week.  (keeping my fingers crossed)  A friend of mine has Crohn's and she told mer that her GI said that Asacol is not for people with left sided UC.  Maybe that's why it wasn't doing anything for me??  Anyone ever hear that theory?

munchkindd, I have lower left sided colitis. Was diagnosed with it back in 1986. I too was put on Azulfidine and took it for many many years. Had long periods of remission but did have rectal flares on occasion, including one flare in January 2007, other than that I have been in remission. I was put on Asacol 400mg after the azulfidine, 6 pills a day. Never had any problem with them not dissolving back then. I too at one point was on the enemas. I had a colonoscopy two years ago and it showed fine. Not a thing present other than small signs of colitis right above where my colitis actually is. I am now back on Asacol for maintenance 400 mg 4 pills a day. Am using Canasa 1000mg suppositories every other night. I too this time around have seen two whole pills in my stool one time, and a partial shell one other time. Been back on them since July 2007. And this was just two or three weeks ago that I saw two whole pills. My gastro doctor has not mentioned to me that the Asacol does not help left sided colitis. But he did say if I kept seeing pills to let them know as they would have to change my medicine.
Posted 2/13/2008 1:00 AM (GMT 0)

BTC said...
Q - I asked my doc about rectal meds after reading about them on this forum and he said since I have LS they wouldn't go up enough to do anything. He said they are only for rectal problems.

wow....I'm almost speechless ( nono yeah, right..lol!).   Do you think they would help considering UC starts at the rectum?

It doesn't matter how high it goes (and I emphasise that point).....and if you're only on oral 5ASA meds...it won't deal with the rectum. 

I don't know how any GI doctor would ever, ever, ever use the same bovine excretion excuse to patients who depend on their treatment to get better.

My theory of that is many GIs have already realised that many patients won't be faithful in using them...or the doctors are themselves butt med shy.

The "bottom" line is this......YOU must be proactive in YOUR care (I'm not yelling, just emphasising).  You have a responsibility to understand what can work for you and to not waste the time with a doctor who won't even prescribe you a first-line med to an area where the actual disease starts. 

I have witnessed resistance of many a member here who eventually use them and have found relief...be it months or years. 

Treat both ends...only makes sense....and through using it for 19 years, my UC has never spread, nor has it ever been as bad as my initial flare.  I have my doc to thank for that and that was a mighty long time ago where the idea was starting to be embrased.  Your doctor is a tad behind the times.

I hope you reconsider to request them rather than ask about them....at least you'll know.

quincy

Posted 2/13/2008 1:04 AM (GMT 0)
Asacol works quite well for left-sided UC if used in combo with rectal meds.
Lower left-side would be considered ulcerative proctosigmoiditis...which I have...but I've never been on a high dosage. I think it's possible that for the ones who see the pills in the toilet, the PH level isn't condusive to dissolving the shell. At least there are options available. Maybe the 800mg Asacol would work better??

quincy
Posted 2/13/2008 1:26 AM (GMT 0)

quincy said...

bovine excretion excuse

I just wanted to say that's a great phrase. Lol. And I totally agree with your post. It only makes sense that Rowasa would help everyone with UC, since inflammation starts in the rectum. I'm on Asacol and I know I had left-sided inflammation previously, but if it's not helping you maybe you could discuss switching to Colozal and adding rectal meds?
Posted 2/13/2008 1:37 AM (GMT 0)
Thanks...just wanted to keep it "clean"...and it fits in nicely with the poo theme..lol!

Any oral 5ASA meds by themselves will NOT deal with the rectal inflammation if its medication has already gone through 5 or 6 feet of colon....do the math conidering how much med is in the pills and how much is in rectal meds (concentrated in usually the worst inflamed area of the colon....last to heal as well).

Last to heal means more solid stool going through that area...yeeeowch! white knuckle rides on the toilet (literally feeling like one's butt is dry heaving at a high rate a gazzillion times a day) isn't  worth not using rectal meds.   I really wish more would try them....

And do I like using them?....no...I groan like Mr. Bean when I remember, but not a total waste of 10 seconds out of my life!

q

Posted 2/13/2008 1:51 AM (GMT 0)
I certainly hope Azulfidine does not cause bone marrow suppression.......Has anyone else every heard that?  I'll have to ask my GI and maybe do a little research myself.  Wouldn't it be so much easier if all the GI's had the same ideas about UC and the meds?  Butt........no pun intended, lol, that would make life too easy for us.

Posted 2/13/2008 2:49 PM (GMT 0)
Hi fellow sufferers,

 

I was diagnosed in May 2007 with left sided colitis up to the splenic felxture and was put on steroids which worked well at high dose, I was also put on Pentasa granules, it seemed to be going ok till I got down to lower dose steroids and then I had a flare again when I got to around 5 mg or less of steroid.  I was told to go back to the high dose of sterpoids again, am taking mesalazine enemas and Asacol.  I also take omega 3 in high does, vitamin E, Vitamin C, Zinc, DHEA, MSM, psyllium husks and VSL#3 probiotic powders.  I came down to around 5 mg of steroid and flared again and I have an 88 year old dad with cancer to look after and a 80 year old mother with dementia to deal with.  I am at the point where I have tried both immuran and 6mp with extreme side effects and was "offered" tacrolimus, I id research and saw the incidence of side effects were horrendound very high, maybe 50 to 75 % incidence of them happening.

I am here for advice abouyt surgery,  I am so low that I do not believe I can suffer any longer, I sweat badly, have bone pain, eyesight problems and skin problems when in flare up and I just have no will to live left.  Apparently they believe I had this for 4 years undiagnosed. I know this must  seem defeatest to you guys but I feel unable to fight any longer and am tired of life like this, I don't go out, am unable to eat many things and believe that it is not worth living like this.  I am now on Asacol as I couldn't swallow the granules, they made me puke.

Any help in what decision I should take ?.  I get very ill on the immuno suppressants and keep flaring when down to 5 mg of steroid.  I have now been on steroids since May 07 with just a 3 week break before I broke again.

I don't know how you guys have managed to suffer so long and admire you for your fight.  I am 44 and just feel beaten, depressesd and in great pain with suffering.

Please help if you can, I think I need to make a decision soon as I am unable to cope with the terrible suffering and lack of life.

 

Thank you in advance

 

 

Julian, Bristol uk

Posted 2/13/2008 4:37 PM (GMT 0)
Hi Julian. Taking care of elderly, ill, parents is no easy task. Please try to get some help, not just for the UC, but for you. It would be very easy to get depressed, but you must keep up the fight. Take care of yourself.
Posted 2/13/2008 6:36 PM (GMT 0)
Julian, sometimes surgery isn't about needing it for physical health but for mental too. If you feel that this has interferred with your quality of life then yes, I think that you should persue the surgery angle. There are 2 different types of surgeries. One is have the whole colon removed and live life with an ostomy bag or there is the J-pouch. This is where they remove your large intestine, create a new colon out of a portion of your small intestine and reattach it eventually to your rectal walls. www.jpouch.org

Please hang in there. Are you on any anti-depressants right now? If not, it might not be a bad idea to start on one. It is extremely tough to deal with the elderly and take care of yourself at the same time - I'm going thru the same thing at the moment. Do you have anyone at all that can help take the burden of caring for your parents?
Posted 2/13/2008 8:04 PM (GMT 0)
I was initially started on Asacol, but just couldn't tolerate it. The D. was so bad I couldn't even leave the bathroom, and the pain was so bad I had to sit doubled over from the pain. My GI at the time switched me to Pentasa, along with Pred.

Fast forward a little over a year, when I changed GI's for cause. My new (and fabulous) GI told me he was puzzled as to why I was on Pentasa because it and Asacol weren't particularly effective for left-sided UC. He put me on Colazal and Rowasa. The Colazal helped, but the Rowasa had the same effect as the oral mesalamine. Steroid enemas didn't do a thing for me.

Anyway, my GI definitely prefers to use Colazal (Balsalazide) for left-siders.
Posted 2/13/2008 11:04 PM (GMT 0)

quincy said...
Asacol works quite well for left-sided UC if used in combo with rectal meds.
Lower left-side would be considered ulcerative proctosigmoiditis...which I have...but I've never been on a high dosage. I think it's possible that for the ones who see the pills in the toilet, the PH level isn't condusive to dissolving the shell. At least there are options available. Maybe the 800mg Asacol would work better??

quincy

Mine is present in the lower left side and rectal area only also. My last colonoscopy report stated possible signs of aspirin use. I told my GI I don't take aspirin, I take Tylenol only. He said Tylenol would not cause that. So that beats me where that came from.
Posted 7/22/2008 10:44 PM (GMT 0)
Now, on top of the female problems I am I think starting to see signs of a rectal flare. Great. And all of this since the end of June. For the past two days I've not gone to the bathroom like I have been before. Was having normal solid formed bm's until yesterday. Since yesterday I have passed a good deal of gas with what I have been able to do and have noticed a little brownish watery mucus all of a sudden, just since yesterday. I have been using the Canasa 1000mg once every other day for maintenance, should I up this to every night now till this heals? And I've also noticed a bit of odor with this stuff. I do hope this Klebsiella Pneumoniae bacteria that infected my urinary tract did not infect my rectum also, seeing as the bacteria is normally found in your intestines and is there to keep it healthy. I would think the antibiotic I am on would have taken care of that anyway.

Anyway, my question is, should I up my Asacol also back to the 6 a day from the maintenance dose of 4 a day until this feels better? Or does everyone think I am actually having a flare after being on both meds for a good while now. I've been using the suppositories since January 07, was using them nightly for 3 months and then switched to every other night per the doctors instructions. I was put back on the Asacol a year ago this month for maintenance. Is it possible to have a flare come up while on both meds? Or can I attribute any of this to the other female related problems I am having? After all, the female areas back up to the bowel and rectal area. I've been on an antibiotic for 9 days straight now and know antibiotics can wreak havoc on the intestinal tract, thus the reason for taking the probiotics. Thanks.

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