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Ulcerative Colitis
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Posted 5/27/2014 4:21 AM (GMT 0)
Hello all. New member on this site. I was diagnosed with U.P last October after my first colonoscopy. I had been having some rectal bleeding and had brushed it off for a few months (stupid I know). Luckily after my colonoscopy I got that flare under control by using Canasa and hydrocortisone supps prescribed by my GI. A month later I started flaring again and it hasn't been under control since. I've cut out raw veggies, whole wheat, raw fruits, and other things that my doctor reccomended, and have continued using the prescribed meds. I had a second colonoscopy earlier this month which seemed useless because it only confirmed what we already knew. Doctor prescribed cortenemas, which I've been using for 2 weeks now with no improvement, and maybe even a worsening of symptoms. Lots of blood recently. I feel like I'm back tracking in my treatment and I'm so frustrated by it. Does anyone on here live in the Charlotte, NC area and have a fantastic GI that they would recommend? I'm thinking of getting a second opinion, as my doctor doesn't seem to be able to fix me. He seems reluctant to try oral meds as of right now. Any help would be appreciated.

24 year old female diagnosed with U.P October 2013
Canasa supps
Hydrocortisone supps
Cortenemas
VSL # 3
Fish oil
Posted 5/27/2014 4:54 AM (GMT 0)
Seems really strange not to want to try oral meds....one of the first and safest meds to try are oral mesalamines (Asacol HD and the like). There's almost no reason NOT to try those....and you need some maintenance meds.

I'm not in the NC area but I'd definitely look for another GI.
Posted 5/27/2014 12:11 PM (GMT 0)
UCHater is right - you need oral mesalamine plus rectal mesalamine. If the cortenemas aren't making a difference, switch to retention mesalamine enemas, add oral mesalamine and then see if that helps within a week or so. If not, oral prednisone is what's next.

don't ever stop using your mesalamine meds again (assuming you get another remission).
Posted 5/27/2014 12:12 PM (GMT 0)
Usually oral Mesalamines like Asacol HD are the first thing they try. Strange. I'd find a new GI
Posted 5/27/2014 12:54 PM (GMT 0)
Doesn't hurt to try some oral mesalamines which are pretty safe but I kind of have to buck the trend on here. If all you have is proctitus, confirmed by two colonoscopies, I'm not sure how much the oral meds are going to help as they don't really reach down to the area where you problem is. You are making a mistake in thinking about finding a new doctor who can fix you. Might happen, might not. UC is a chronic lifelong disease which cannot be easily fixed, despite the fact that it worked temporarily for you the first time. You need to be your own second opinion by reading up on this as much as possible, learning it yourself. There is a med ladder and you need to decide for yourself which meds are or are not worth the increasing risks as you go up that ladder. In the end, if you want another doctor, that's not uncommon but I think you are being a little too naive with this disease to understand that switching doctors may not benefit you and, even if it does, you may be taking meds to control your disease that have many side effects you might not yet be ready for.
Posted 5/27/2014 1:16 PM (GMT 0)
Thank you all for your advice. I'm calling my doctor today. I'm not naive in thinkng I can be cured since I know it's a chronic disease. I just want some relief or something better than constant blood. We all know how scary it can be. After two weeks of cortenemas should I have some sort of improvement? Or am I not patient enough? I'm also changing my diet completely to a low residue diet to try to ease symptoms.
Posted 5/27/2014 1:43 PM (GMT 0)
tell your doc you wanna try an oral mesalamine like others have mentioned - if he balks, kick him to the curb -
Posted 5/27/2014 1:46 PM (GMT 0)
Just noticed you are taking fish oil. Are you absolutely sure it is helping you? There is much evidence that it can help some with UC but I've never really come across anyone who can categorically say yes, it is helping them. Most who claim that they feel fish oil helps them are those that are taking it along with several other things as part of a treatment plan but can't specifically say that that one thing in particular is helping them. The reason I asked is because fish oil can make some worse so if you're not sure it is actually helping you, you might want to discontinue it for a while and see if it helps. As far as the other stuff goes, I'm sure a different doctor might want to pull out some big guns to make you feel better but the big guns come with increased risks and side effects - something you might want to consider if it is worth it or not. Oral mesalamines are pretty safe but many of the other options come with more and more risks.
Posted 5/27/2014 1:52 PM (GMT 0)
Agree with the fish oil.... I know it seems to help in Crohns but found it possibly worsened my UC symptoms.

Also... enemas make me bleed. :(



What were your suppository doses during your last flare?
Once in remission did you still use some for maintenance?



I agree that an oral mesalamine may not help. And prednisone is a jump up the ladder I would try to out off a little longer. :)
Posted 5/27/2014 2:17 PM (GMT 0)
Absolutely would recommend some form of oral and/or suppository mesalamine for maintenance (typically somewhere from 2-5 grams per day broken up in to 2 or 3 doses throughout the day should help). As for getting the flare under control, your doctor may prescribe you some Prednisone which is a corticosteroid that is often used to help get flare ups under control. It does have some side affects (weight gain, water retention, increased appetite to name a few...your doctor should go over these with you before you start taking them) and these side affects are especially noticed when used long term, however for getting rid of a flare it usually works well and should give your body some time to heal, recover and get in to remission. The VSL#3 I have never personally used, but I've only ever read and heard good things about it. I would recommend you also try psyllium seed powder, or psyllium husk. This is a fibre supplement that has appeared to help UC symptoms in many different people. Unfortunately you'll have to do some trial and error to find what works best for you, but this website is a great help, and there are many other resources on the internet to provide you with additional information and insight as well.
Posted 5/27/2014 3:11 PM (GMT 0)
Everything that you have tried thus far is not working, so I do think you need to try some oral meds. If your GI is reluctant to give this a shot, I would look elsewhere.
Posted 5/27/2014 10:08 PM (GMT 0)
After playing phone tag with my doctor all day we had a chat. At first he wanted to put me back on prednisone, which I just tapered down from after being on it for three months, with no improvement. He gave me samples of Uceris to try for the next month. I'm remaining hopeful, although I see that it's not ideal for the long term. Fingers crossed! Thanks for all the advice. I'm really glad I found this site!
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