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Ulcerative Colitis
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Posted 3/23/2014 5:43 AM (GMT 0)
Hi everyone!

Just found this wonderful forum with a bunch of great advice on it! I was diagnosed with mild UC in December after having symptoms for over a year. I've been on nightly Salofalk suppositories since then (anyone else on Salofalk?) but honestly don't find they've done much for me. One major questions I have about UC but haven't asked my doc yet is can it get worse if it's not getting better? I feel very fortunate to have a mild case, but stress over the thought that it might get worse over time. Plus it doesn't help that I've basically been in a flare up since October 2012. Is that even normal? lol!

I know diet and UC is a touchy subject. I've recently gone vegan and gluten-free, but not much has changed in the few weeks I've been testing it out. I was just reading up on SCD and might give that one a shot next. I'm crossing my fingers that the "cure" could be as simple as diet change...

Anyway, just wanted to say hi! I look forward to posting on here and reading all your helpful advice. So happy to have found a forum filled with individuals going through the same thing as me.
Posted 3/23/2014 6:22 AM (GMT 0)
Hello and welcome. Some people have better luck with diet than others. I would never say it's a bad idea to take on a vegan diet, I love the idea but I personally don't know whether I could do it myself. best of luck to you of course and I give you a ton of credit for having the discipline to give up all animal products. I was using Canasa for quite some time, I still use them quite often. Canasa is the equal o salofalk suppositories but they are manufactured in the US. They are 1000mg suppositories. I like them a lot and they kept my symptoms at bay for quite some time when I was first diagnosed with procititis. They problem is that over time, if your inflammation goes beyond the rectum they will nto treat that area. This doesn't happen to everyone, some people never have inflammation beyond the rectum and for those people, salofalk suppositories can be alll they need but many times, things can proceed over time and salofalk isn't enough. I haven't had luck with diet as a healing agent but others have. Hopefully you respond well to diet and you don't have consider other treatments. Happy you have found us and best of luck :)
Posted 3/23/2014 7:54 AM (GMT 0)
Welcome to Healingwell!

Salofalk did nothing for me. If you're not improving then get new meds. Theres always a chance of it getting worse.
Posted 3/23/2014 1:31 PM (GMT 0)
Yes UC can get worse. At this point if the med you are on hasn't given you any improvement then you need to contact your GI for the next course of action. You may have better luck with enemas instead of suppositories. Is your UC only in your rectum?
Posted 3/23/2014 1:45 PM (GMT 0)
It might getter better before it gets worse but there's nothing standard about this disease. Being on suppositories only is kind of a weird treatment plan unless you just have proctitus but even then I would treat with more than suppositories only. You really should be on other meds, particularly if you don't feel the suppositories are doing anything. People here talk about going in and out of flares but I have been in a constant flare for 3 1/2 years (since diagnosis), although it has gotten better and better throughout that whole time. Sometimes it can get worse for some, especially during periods of high stress. I am a big believer that diet modification can greatly help UC but I'm not talking about specific diets, I'm talking about eliminating or controlling foods that you find cause you problems and that is different in every individual.
Posted 3/23/2014 2:10 PM (GMT 0)
Thank you all for your responses! After telling my GI I didn't notice much difference on Salofalk, he prescribed me cortisone foam but I found that only made things worse. It's only been two weeks since that, but yes I do need to call and let him know.

My UC inflammation is apparently only in the rectum. But my current GI is not the one who did my colonoscopy and the one who did it said he was unsure what I have but that inflammation is present in the rectum... that it "might" be UC. Anyway, my story is a little odd! But that's that.
Posted 3/23/2014 2:31 PM (GMT 0)
You should be on oral mesalamine.
Posted 3/23/2014 2:37 PM (GMT 0)
Thanks, Gary! Maybe I'll mention that to my doc, or at least prod him about other options. He seems pretty adamant about Salofalk, saying it's the best med for me now with little side effects. But if it isn't working, it isn't working.
Posted 3/23/2014 2:50 PM (GMT 0)
You could always try mesalamine enemas. They would go farther into the rectum and left side but if the scope you had is correct and it's just in the rectum, the sallofalk could help. are you using it at night or morning or both? The problem is that inflammation can spread so you never know whether the scope was done before the flare up progressed. Oral tablets aren't a bad suggestion if the rectals do not help.
Posted 3/23/2014 3:00 PM (GMT 0)
Using it just at night. And very true about the inflammation spreading. I have another colonoscopy set for July with my current doc, but I'm itching to get it bumped up so he can finally see what's happening in there.

With all of these meds, I'm just terrified of side effects. At least Salofalk is local and doesn't really get into the blood stream.
Posted 3/23/2014 3:19 PM (GMT 0)
Why not try using it morning and night? That may help :)
Posted 3/23/2014 4:01 PM (GMT 0)
I also think you should be on oral mesalamine, I was also diagnosed with mild UC, and I have been doing really well on a low dose of Pentasa, with no horrible side effects...something to think about.
Posted 3/23/2014 4:17 PM (GMT 0)
Thanks so much for the advice, guys! Poppie, I will definitely keep that in mind for my next chat with the doc.
Posted 3/23/2014 11:09 PM (GMT 0)
I second the mesalamine enema suggestion. Try them first, nightly for a month or 6 weeks and then if there is still no improvement you can ask your GI to go on oral meds.
IMO don't jump on oral meds straight away.
Have you been tested for STDs? Certain ones can cause proctitis. Google it.
Posted 3/24/2014 8:02 PM (GMT 0)
I am also on Salofalk but the enema (4g) rather than the suppositories. I found it a great help. I was also on Pentasa (4g/day) and found the combination of meds stopped my bleeding immediately and reduced the pain very quickly too.

I have just seen a new GI and he has changed my meds to Salofalk granules. He told me that the Pentasa tablets release in the right side of the colon and these newer Salofalk granules are seen to last all the way through to the left side of the colon and even as far as the rectum. I have left sided colitis to 40cm. I wasn't looking forward to changing to granules as I'd gotten used to the Pentasa tablets and the routine but the granules are a breeze, I take 3g in the morning and forget about it for the rest of the day!! (they are also vanilla pudding flavour - delish!)

Best of luck with your new doc, I hope it goes well. My new GI is insisting on doing a new scope himself this week as he prefers to diagnose meds from his own tests and results which I thought was good and thorough, hopefully your doc will bump yours for you too.
Posted 3/25/2014 2:24 AM (GMT 0)
Conquer UC, thank you for the tip! I have been tested, but good to know certain STD's are a cause. I had no idea!

Caycro, thank you for the info, as well. All things to keep in mind and suggest! Hope things with your new GI goes smoothly. I agree, having the doc know what's going on first hand can only help! Best of luck to you!
Posted 3/25/2014 3:48 AM (GMT 0)
Welcome! LOVE the name!

Don't have anything to add but wanted to say hi :)
Posted 3/25/2014 3:51 AM (GMT 0)
Hi! And haha thanks, embersglow1!
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