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HELP! Canasa permanently???

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Ulcerative Colitis
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Posted 3/18/2017 2:48 PM (GMT -5)
HI everyone I need some opinions here. I am currently taking Balsalazide and Uceris for a flare of my proctitis and colitis. I was also on canasa but was told to stop it a week ago. I noticed a few days after I stopped it that my symptoms were coming back and now I feel horrible. I called the on call gi dr which is not mine but he said to go back on the canasa and stop the balsalazide. He said the balsalazide could be causing my flare up because other mesalamines have done that in the past. I took lialda and apriso both in the past and they both caused me to flare. He said that I may just have to take canasa permanently instead of pills since they seem to help and the pills may not be getting all the way down there. Which I would be fine with but my gi dr told me that I cant stay on suppositories permanently and I need to be on a pill. Who do I believe? My gi dr wants me to try the immunomodulators and I don't want to and just want to try the canasa and see if that helps. WHat do you think I should do?
Posted 3/18/2017 3:01 PM (GMT -5)
I have never heard that you can't stay on them permanently. Maybe others will offer different opinions, but they are very safe and topical. i would have been overjoyed if my UC was well managed long-term with Canasa alone. I hope it works for you!
Posted 3/19/2017 5:04 AM (GMT -5)
I would stay on balsalazide and canasa indefinitely. They are both perfectly safe for indefinite, longterm maintenence use. Both docs are nuts for telling you to stop your meds.

If that combo isn't enough after 3-4 weeks then yes take immunomodulators. I've been on them for 3 plus years and have had no side effects from them.
Posted 3/19/2017 10:12 AM (GMT -5)
The dr on call told me to stop the balsalzide because it seemed to bring on my flare.
Posted 3/19/2017 10:20 AM (GMT -5)
I have no proper words to express my utter disbelief in your doctor's prescription and use of medications. Is he a gastroenterologist?

What's the location and extent of your UC?

Have you everr been on retention enemas?

q
Posted 3/19/2017 10:34 AM (GMT -5)
I have up and she said a little bit higher. But when she did the sigmoidoscopy she couldnt see it just when she did a biopsy. A fee months before that i had a colonoscopy and they just said it was up. The only reason i got the flex sig was because everytime i stopped the canasa my symptoms woyld come back. Thats why i feel like i just need to take canasa daily since it helps whe i am on it.
Posted 3/19/2017 10:36 AM (GMT -5)
My gi says that i shouldnt be on canasa on a daily basis but the gi dr i spoke to yesterday from the same practice said i can jyst take canasa daily. So im so confused on who to believe
Posted 3/19/2017 11:21 AM (GMT -5)
canasa is fine daily. the problem is that it sounds like your inflammation extends beyond the area canasa treats. If canasa keeps you healthy, great, but if you have a flare up and it goes beyond the last few inches of the rectum, you will likely need to take something to stay in remission. for now, i would use the canasa daily. i used to use it 2x daily.
Posted 3/19/2017 11:53 AM (GMT -5)
So basically what you are saying is i can stay on canasa daily and if my inflammation goes higher than the rectum i can add a pill version to treat the top and canasa for the bottome part. My dr says that the pill should be reaching the rectum but i dont think it is.
Posted 3/19/2017 2:05 PM (GMT -5)
I read the study that oral and rectal meds together work better than one or the other alone but that study was for UC beyond proctitis. It did not apply for proctitis only. I do everything I can to manage my UP with rectal meds only as I hate the oral mesalamines.

I am currently using Rowasa and Canasa and was hoping to use Lialda and Rowasa instead but my body does not like Lialda and I feel so much better when I don't take it. So I will be using rectal meds the rest of my life and pray that the mesalamines are all I ever have to use. I put up with gas and bloating but it's better than moving up the med ladder for the time being.

Get back on Canasa and use it twice a day if you have too. I did.
Posted 3/20/2017 12:39 PM (GMT -5)
Oral and rectal route is truly best.....you can alternate steroid rectal and mesalamine. There are retention enemas with a higher dosage.. 4g...and go from there.

Oral mesalamine will not treat rectum fully since medication wouldn't be sitting in there long enough.

Yes, you can use mesalamine rectal indefinitely, but at this point....i dont think you have a high enough rectal dosage.

Both ends...absolutely.

q
Posted 3/20/2017 12:44 PM (GMT -5)
Jusy saw my gi i am going to do canasa twice a day for a week and the do it once a day indefinitely and back on balsalazide. Hopefully with these two together i will start to feel better.
Posted 3/20/2017 12:44 PM (GMT -5)
Need to add that one doesn't just stop mesalamine. It should be tapered and eventually taken to a maintenance.
The supps could be a maintenance.....and twice a day could be an OK treatment, but if they don't quite reach and treat an area....then they aren't a successful enough treatment.

Is your frustration with your doctor or the understanding how the med process works regarding mesalamine?

q
Posted 3/20/2017 1:23 PM (GMT -5)
I started using IB Guard in combo with gas x to help with the bloating and gas that I get from Mesalamines.
It has been helping!

Quincy. Do you think the Rowasa PM and Canasa AM are sufficient for proctitis? I was on Lialda but get side effects from the oral pills. I was actually down to taking 1 Lialda a day because 2 is too much for me. My doc was okay with it.
Posted 3/20/2017 2:14 PM (GMT -5)
How many times a day do you take ib guard?
Posted 3/20/2017 3:02 PM (GMT -5)
So far I've taken them once a day but am definitely going to increase to 2x a day and then go from there. It helps to take gas x with the ib guard and you need to take it at least 30 minutes before or after meals.

If it continues to calm the spasms then I might try Lialda again although it makes me feel like I'm on another planet. When I first tried Lialda last fall it did increase my cramping and urgency so I thought it made me worse at the time. Now that the Rowasa is working to eliminate blood/mucous and produces formed Bm's, I know the cramping is not from a flare but from the meds or possible IBS etc. I am going to continue to increase the IB guard as I can tolerate it. I have reflux so have to be careful. Let me know how the balsalizide makes you feel this time and how you like the VSl#3. I tried it last year and it made me gassier etc.. Bloating is not something I've been able to concur but at least my tummy is calm.
Posted 3/20/2017 4:25 PM (GMT -5)
I am alot gassier with the balsalazide. But i will deal with that if i have too. I did lialda before and it made me flare. I am currently on amitriptyline for my ibs and i helps great with my pain.
Posted 3/20/2017 6:37 PM (GMT -5)
Does the amitriptyline help your mood as well? This whole thing has gotten to me and between that and hormone changes I feel depressed. I have a script for it but never filled it because I was afraid it would make me too tired. Does it stop the spasm pain and make it easier to pass the gas?

Also why not try Rowasa if your current plan does not work. I was on 2 Canasa and the cortifoam. Rowasa worked better than both of those.
Posted 3/20/2017 6:45 PM (GMT -5)
It helps alot with the spasms. It doesnt make me too tired. I take it at night so it helps me go to sleep. As for mood it can help with that but i didbt notice a change so my dr put me on lexapro as well. I never tried the rowasa but i am willing to try it if what i am doing now doesnt help. The canasa seems to work it is when the dr takes me off of it i seem to flare. So im hoping since i will stay on it and do the balsalazide i will be good. The balsalazide does give me gas but i can deal with that. I just dont want to go on the heavier drugs yet.
Posted 3/22/2017 9:46 AM (GMT -5)
Did lexapro do anything pro/con for GI symptoms? I know the amytrip can cause constipation. I asked by primary doc about lexapro and she said some patients get diarrhea from it so I was afraid to try it. I need something to help with the stress and lexapro has done wonders for my friend.
Does it help you deal better with all of these UC problems?
Posted 3/22/2017 10:47 AM (GMT -5)
I luckily didnt have side effects from the lexapro but my mom is o it and she did have some diarrhea. I asked my psychiatrist and she said probably the reason i didnt have the diarrhea is because im also on amitriptyline and that slows you system down. The amitriptyline has worked wonders on me with the pain i have for ibs. The only thing i dont like about the amitriptyline is i am eating alot more. I lost 30lbs with my ibs cause i had alot of diarrhea and pain once i got on the amitriptyline it helped with my diarrhea and pain and i also gained back all the weight.
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