Salofalk versus asacol...what has been your experience with it

Had GE appt Mar 3.11. It was a good short meeting. GE is young, open to other alternatives when I feel ready to. Referral to him was recommendation for a resection of colon. But since doing fine since last scope in April 2010, he says will not go with recommendation. And to get a colectomy out of my head, he says not any time soon. So relieved! But of course, may happen pending toxic megacolon or any signs of dysplasia. So I am good with that. I think we all understand the possibilities of this disease!

He felt I should increase asacol though but I mentioned that anything higher than 10 pills makes my kidneys hurt and I get the chills also. So he is recommending a switch to salofalk, that it is pretty much the same as asacol but the coating ingredients a bit different, as it is probably the coating ingredients that I get the reaction to.

So I'm asking you guys what you experience has been with this! Right now I'm doing about total 5 to 6 pills per day, 3inam 3inpm and it seems to be OK to tolerate so far.

I didn't get a chance to ask about the putting on weight question though. I see him in May 2011 for a scope. I figured to let him have a look there since he is a GE! Depending on how things are he said he usually has UCer's get a scope either every year or every 18 months.

Tell you more later....

I have been taking 2g/bidaily salofalk for quite some time, however I have just recently switched to imuran because the 5-asa doesn't seem to be working anymore. When I was first prescribed salofalk it worked quite well, hope you have a good experience with it. I never experienced any side effects that I can remember using this drug.

Yeah I mentioned that to my GE on Thursday when I had my appointment, she said since my UC affects my entire colon, it would only be treating a small area, and she didn't feel as thought it would be effective... I asked her if I had done everything "properly" up to this point, and she said yes and that the next step was imuran... what are your thoughts on this? I held of trying imuran for a few months to try and get things to settle down on their own without any success, prednisone seemed to be the only med which held any real benefits, but I don't want to rely on such a nasty drug all the time. Seems as though every 3-6 months I would have a nasty flare up, usually requiring hospitalization.

Yes, we did talk about the enemas, he said he is glad that I use them and they are helping me. He commented on my 3 page list and said wow, you are an organized patient and if he could keep it. I said yes, one copy is yours, this was to make things easier because he must see so many other patients and that I did it so I wouldn't forget certain topics as well.

Since I've had two major flares and a couple of minor ones, he said he wasn't too concerned at the moment because the asacol and enemas are helping. He said he has seen other patients that are having a harder time. He actually sounded a bit surprised that I've only used asacol only and only recently the enemas since 2004 and that I didn't use much steroids also. I said, yes, I hope that I don't need to but understand that if I do require I will use the steroids.

We also talked about if/when the surgery scenario ever comes into play, what would I prefer. I said the permanent ileostomy for sure, just to avoid any problems with j-pouches, etc., as things are different for other people. With my luck, I would probably have major problems. (I'm such a pessimist some times, drives me crazy!)

He saw the 6 pills per day though and felt I should be up a bit higher, hence the salofalk med change.

I'm still waiting for a gallbladder removal surgery date and getting skinnier! It's really p'ing me off! I can only eat certain foods and drinks. I miss milk and cheese and steak and butter and on and on the list goes. It's getting to almost be anything I eat makes the gallbladder have short bursts of pain!

UC is holding out OK, no blood or diarrhea since January 18, 2011 (stupid antibiotics!) they put you in a situation d*** if you do and d*** if you don't!

Q: We didn't talk about changing the enemas though as that did not cross my mind. Do you think that would make difference? I am sort of hesitant about changing the pills too but because of the increase of asacol at times, the reaction is not what I want. I see in your signature that you use the salofalk enema. As for the pentasa I'll have to research about that. I've never really read about it yet.

Oh yes, I almost forgot, I'm not on any vitamins at the moment because of a possible surgery (either emergency or booked). They want you to be off them for at least 10 days prior to. And haven't been smoking also because of this possibility also. So I am hanging on! Once I've recovered from the surgery my plan is to use quincy's meds/vitamins/fibre methods to maintain this d*** UC. Q, it sounds like this has successfully worked for you so far, so it won't hurt to try!

Later.....

Yes, I actually like him, I was very surprised to see that he was young, I was expecting a stodgy elderly doctor. It was the St. Boniface hospital. I hear that this is the better one to go to. I've never been there before, so I hope it is. Never been one to go to hospitals unless absolutely necessary.

He did say the salofalk is 500 mg and we didn't talk details about how much. Although I know we should take what the doctors prescribe, I usually go with less. For sure I went with less with asacol because of the reaction and that when not in a flare, they would make me so constipated. I know if a flare comes up, it would take a while for the medication to kick in if I had to increase it but what the heck, I'll have to work on it when a flare comes up again.

Yes, no prednisone since 2004 and hope (knock on wood) that I don't require it soon enough! That was one tough go last time. Again, I forgot to ask him, it was on my list, why they start out on prednisone at 40 mg/day right off the hop?! That stuff through me for a four week doozy before the shorter taper, I thought I would lose my mind!

I've asked if I can get the surgery done in Winnipeg, as the small town I'm in, doesn't have me scheduled yet! I hope the city can do it quicker and better? I heard some scary stories about some people getting sent to Winnipeg for ERCP because of stone lodged in the bile duct or pancreas either shortly after surgery or 2 weeks after! I understand that it happens though. Yikes...It's going to be 3 months on March 18th with the gallbladder off/on pain and eating bland foods and drinking lots of water. I'm going to weigh 115lbs soon! I don't like that. Oh yeah, I asked for blood work as well to establish a base line for this visit. This is only a second visit I've had with a GE, the other was in 2004 in Vancouver.

No, didn't stay long in the city, left about 3 p.m. just enough time for a quick visit to the casino and lunch. It's nice to get away for a quick jaunt now and then.

Glad to hear your appointment went well. It always feel such a relief, isn't it? You are definitely doing something right there, Quincy! And I hope to be following your methods soon after the gallbladder surgery!

katkat...Yes, St. B has a gastro clinic. It's a teaching hospital and I believe some research.

I don't know about needing an ercp, but you would if there are stones stuck in the pancreas or bile ducts. Hope they get them all and that you're not like my sister and make them all on her own without a gallbladder..lol.

If you get it done in the city...I would love to visit you

Hope you don't have too many bad gallbladder pain days!

Keep us posted.
q

LOL...yeah, the enemas rule! it's good you're having success with the Entocort. Is it a liquid or foam?

Nice you won't have to travel for the surgery and will be close to home. Easier to travel for c-scopes. So, Dr. Moffat will be doing the c-scope?

Curious what purge you'll be doing for the scope?

Do you have any antispasmodics? That might help the lower left pain..I suspect that it might be spasming. especially if your bms are formed. That area has to work a bit harder when it's got stool to move through...

If we can't get together before the scope, maybe we can do it in Sept during your follow-up.

Happy to hear things are doing a bit better.
q

That would be great....I'll contact Sherry regarding email to see if the May get together can work.

The Golytely ...sucks to do the gallon...but a sure clean-out! Bring a straw! At least you can eat that morning...no starving for days before. What time do you usually start it...5ish?

The enema...a pill in liquid? is that how it comes, or did the doc suggest you do it that way? wow, obviously I'm not so up on the enemas as I may believe..lol.

Kristi comes and goes...I'm assume she's doing well so isn't here often. Have you changed to the Salofalk yet?

q

Sounds like a good plan regarding meeting in May...

Oh...split dosage. Never did that before, but should be OK.
I've never had a late scope..always 8 or 9ish.

Hope the pelvic pain is related to something rather than nothing...again..can't suggest the antispasmodics enough..it might just take the edge off especially till your scope.

Ah, never realised there was mixing involved with the enemas. Now, that's dedication!!

Your dizziness....are you thinking it's from the salofalk? Did you just drop the asacol and then start the salofalk?

Do you take them on an empty stomach? They don't dissolve there...hope it's not anything else going on.

Good to hear the bm department is better.

Hope tomorrow is a better day...
q