Thought I was getting better....

Hi, I'm brand new here. I often google things that land me on this forum so I decided to sign up!

I've been in a flare for a straight year... I can hardly take it anymore. I was on Sulfasalazine for the whole year. Sometimes I was taking Canasa, or Rowasa, then 3 different times I was on Prednisone.

This last year every symptom you know for Ulcerative Colitis, I've had at some time or another. Except the stomach pain. (Thank God!) The worse of it is, how many accidents I've had. Probably around 10 this past year!! Very difficult being in outside sales!!! :(

On Oct 31st 2014, after being on prednisone for the last time and it not working- they did a flex sigmoidscopy. It showed I wasn't really in a flare, I had some inflammation. They told me to just take Canasa and keep taking Sulfasalazine and things would get better. Well, that didn't work. So, December 6, I saw my doctor and she prescribed Asacol (the reason I wasn't on it before was because of insurance but by then I hit my deductible so I could afford it)

Well, it's Feb 6, and I've been on Asacol for 8 weeks. I saw some improvement by January, and now I'm back to all my regular symptoms. I can't even hold Canasa, or Rowasa more than a couple minutes! I'm at my wit's end here.

Any advice/help?! Thanks you!!


Noelle
--------------
Asacol 3- 2x a day
Multivitamin with Iron, Fiber
Been on Canasa, Rowasa, Sulfasalazine, Prednisone,
Recently started gluten and dairy free diet.

Sorry to hear this Noelle. This disease can be very frustrating with the ups and downs. It makes it hard to determine what works and what does not.

You are doing the right things. I would just encourage you to keep trying with the Rowasa and Canasa. Continued use of the Rowasa enemas every night seems to help a lot of people. I use Canasa in the morning if I am flaring bad and this helps to calm things down to allow me to hold the enema longer each night. You might only be able to hold the enema for a short time, but the hope is that as things calm down, you will be able to hold it longer and longer each time.

There are lots of other things to try as well...but they sometimes work for one individual and not another. I also find that adding a strong probiotic such as VSL#3 helps along with adding tumeric to my diet to help calm the inflammation in the body.

Hang in there!

I think your doctor is at fault for not switching you (perhaps cost of meds was a problem?) earlier to a different med. Of course you did switch and Asacol has failed after working.

This was my pattern also, meds have never done much for me but you have many more to try before you can say that. So the question is which Rx med should you try next and whether to move up to stronger meds like 6mp. I think the answer would be yes but you'll have do start researching what all your choices are to become a partner in your healthcare.

It may be too early to suggest diet modification to you but I'll do it anyway. Remove gluten (all wheat products) and dairy from your diet for 30 days and see if you have any improvement. Not easy but better to find out early if you have any food intolerances. No, tests are not 100% reliable for this. I had both tests, celiac and lactose and they were negative, but when I removed these from my diet I started getting better symptom-wise. YMMV.

I continue to take Rx but diet mod.has been my saving grace.

Best wishes.

edit to add: I read too quickly and see you are trying GF and dairy-free. Keep doing it and also get some new meds.

Oh my goodness, thank you for the all replies so fast.
Let me see if I can answer all these questions!!

Okay lets go back.... I was diagnosed in August 2011. It's been almost 4 years. I was diagonosed by full colonoscopy. At that time, I had ulcerative proctitis. I got married Nov 2013. And by January 2014 I was having major issues. (Maybe there's a coincidence in getting married! lol) I have to say though, I started taking birth control when I got married and I really, truly believe that had a major effect in the start of my flare. When I stopped taking it, things settled a little bit, but it's never fully gotten back to normal. I started taking prednisone In Jan/Feb.

Feb 17, 2014- 2nd Colonscopy- Now Ulcerative Colitis

By March/April things were okay- it seemed things would get a tad better- then they would get worse again.

In June, I had my first major accident ( in my car no less!)... and knew things were definitely not getting better. By July, I was on prednisone again (2rd time) and that helped and I started tapering off until I was done in September.

In September, I was 15 pounds heavier, was okay, but then she had me start taking prednisone again as I was not successful in going to the bathroom like I should be.

Okay, then by the end of Sept/Oct they had me to try Imuran. It made me sick as a dog, so they had me go off that. Then they started talking to me about taking Humira. But before they did that they wanted me to get the flex sig just to see what's going on. From that, they saw it wasn't really bad in there... and thats when she prescibed Asacol. I'm the one who actually asked about it. She didn't prescribe it in the first place because of how much it cost.

Also, through out the year I had my blood checked every 6 weeks or so. I had to get Venofer in February, and October due to low iron levels. Last I checked, all my blood was good and improving. That might say otherwise now.

I know that what may work for some, doesn't work for others...so I just need to find what works for me! It's a long assss process!

Yes, and this gluten and dairy free ( Paleo) it's only been 3 days lol. Nothing so far, but I have high hopes this could be very helpful. I've just read how wheat/grain is so hard on the digestives!!

Juststud- What's C-diff?

jaxtastic- I will look into the VSL#3. Thanks :)

Platinumpixie- I think you're right. And, Prednisone worked at first, when I started to taper, it would just stop working :(

Imagardener2- Yes, well the cost of it was a problem. I cant believe how expensive all this medicine is. I'm in a better position now to pay for some new prescriptions if they want to change it.

kazbern- The bottle says 800 mg... I'm not sure if I'm at the full dosage, I dont think I am..
Vitamin D is in the multi-vitamin I take. How do I get my vitamin d levels checked?? Just a regular blood test? Why do you switching from Asacol to Pentasa helped so much?

Thank you ALL so much. I should've joined this alot sooner. Hope I answered your questions!!

Post Edited (noelledaykin) : 2/6/2015 9:11:12 AM (GMT-7)

Cdiff mimics uc symptoms, but the cause is a bacterial overgrowth. Most gastroenterologists test stool to make sure a worsening of uc symptoms is truly that, and not cdiff.
www.m.webmd.com/a-to-z-guides/clostridium-difficile-colitis

That's kind of scary. :(
I have my next doctor's appt on Feb 12. Will ask.
Thank you!!