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Is this remission? What should I expect?

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Ulcerative Colitis
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Posted 2/13/2014 4:43 PM (GMT 0)
I was finally diagnosed with Inflammatory Bowel Disease, Ulcerative Colitis, Pancolitis on January 8th. They started me on samples of Asacol HD. It seemed to be improving things. When the insurance said no, they gave me samples of Lialda. I seemed to get worse till they doubled it. Then they tried me on samples of Pentasa.

Next they are talking Apriso. From what I read that is for when you are in remission. This is remission? I do feel WAY better. But, I am sure hoping I can feel better than this.

I have pain, low and on the left starting around 6:00 PM every day. Doesn't matter when I take the drugs, doesn't matter when I eat. Followed by loose BM. Maybe 3 or 4 times at night up and down. (This is NOTHING compared to before. Everything I ate went right through me, constant bleeding...) Very little if any blood. By 7:00 AM or so, I am feeling better. Really tired, taking long long naps. I have gained back a little weight.

They still have me on a low residue diet. Which seems SO unhealthy. I understand the concept. I have just always lived on a lot of salad and whole grains.

How good is good? What do I have to look forward to? Does it just take more time than I am giving it? Is there an issue with switching these drugs all the time. They are all sort of the same.

Oh, I also started taking probiotics again last week. (I had tried them before I had a diagnosis.) Just started some pineapple juice again... It says it has no fiber in it...

What about Balsalazide? It is WAY less expensive. Even once I have gone past my deductible, I still have to pay 30%. Apriso is going to cost me $161.75 a month ($261.75-$100 discount card.) That adds up! Canceled the Satellite and traded in both cars for a single car payment. Being sick is EXPENSIVE!
Balsalazide is 9 pills a day... I am taking 8 of the Pentasa now. Lialda is appealing on that point, but that will cost me $625.93 a month! (There may be a discount there, too.)
Posted 2/13/2014 5:56 PM (GMT 0)
Never heard of Apriso being just a remission med. As far as I know it is just one of the many choices of 5 ASA's. I'm suspecting that you landed on Apriso because your insurance denied all of the others, hence going from med to med to med. You are not in remission. Don't know about the low residue diet but I think you are better off stopping the salads and whole grains, maybe forever. What probiotic are you taking? Many people use the term probiotic loosley. Just saying you are on a probiotic isn't necessarily helpful. Most UC'rs need to use a probiotic that has at least 50 -100 billion CFU's. It's hard to find these in just a regular store. I would be careful of the pineapple juice. Many fruit juices can make UC worse. Everyone is very individual in these regards. Balsalazide is really a Crohn's med. In most UC cases, it doesn't reach the part of your intestines where the trouble is so it is often useless in us. The Lialda discount card will only save you $120, so you will still be paying about $500.
Posted 2/13/2014 5:56 PM (GMT 0)
I was dx'd with panny too - my gi gave me asacol, prednisone, and mesalamine enemas - that is pretty standard protocol - I did extremely well on that for a long time -

so I would question why you were only given the one med -

food is pretty individual - you just have to start somewhere and figure out what works -

same for remission -
Posted 2/13/2014 6:07 PM (GMT 0)
You definitely should be on rectal meds with pancolitis. Oral meds don't reach your rectum, and that is the hardest place to clear up the inflammation. And if you're not getting much better very soon, your GI should be starting you on a short-term course of Prednisone to try to induce remission.

In actual practice, while some medications are labeled as maintaining or inducing remission, the same drugs are properly used for both. Except Prednisone, which should only be used in short courses due to the severe side effects it causes when used for maintenance.

I started out with pancolitis, but it has been left-sided only for years. I was always on balsalazide except for the first couple of weeks, when I found I couldn't tolerate Mesalamine at all. Although it supposedly is best for left-sided, there are a lot of us here who are on it for maintenance.

Oh, and forget living on salad. Most of us can eat salads sparingly or not at all. When I was flaring it was not at all - the pain they gave me was intolerable. Now that I'm in remission, I get away with eating a big salad about once a week; more than that and my IBS (by-product of years of insult to my colon) kicks in and I'm in pain and in the bathroom. I love salad so much that I sometimes get myself in trouble with it!
Posted 2/13/2014 7:39 PM (GMT 0)
They said no rectal meds since that was where there was least inflammation.
Posted 2/13/2014 7:47 PM (GMT 0)
Thank you so much for all of the information and for getting back to me SO FAST!

They gave me bunches of samples to see what was going to work. I have to pay all of it at first. The insurance doesn't pick up anything until we hit a $6000 deductible. Then we pay 30%. So samples have been great. If something less expensive is going to work, PLEASE!

The Apriso website says, "APRISO is indicated for the maintenance of remission of ulcerative colitis (UC). APRISO is a once-daily 5-ASA that features INTELLICOR® delayed- and extended-release delivery—for the maintenance of remission of UC."

Which seems to be saying it is only for UC in remission.

Balsalazide is just SO much less expensive. I am glad to hear that it is working for Judy2.

Oh, I have certainly stopped the salad and whole grain... I just am whining about missing them. Tired of cream of wheat, rice, apple sauce, etc. Whine, whine, whine.
Posted 2/13/2014 8:08 PM (GMT 0)
not happy, i think you are confused about the meds and what remission is.

basically, when you are flaring, you get on a medicine and hopes it takes away your symptoms (remission). some people have to use prednisone but not everyone. prednisone should NOT be used to maintain remission. you want to be on a drug ALWAYS when in remission because that is what is keeping you there. people use lialda, apriso, balsalazide, 6mp, imuran, and biologics to stay in remission. there aren't separate drugs for flares and remission (besides prednisone). it's all just whatever works for treating your disease and then you stay on it for as long as you can.
Posted 2/13/2014 8:12 PM (GMT 0)
The Probiotic is something I bought at Sam's Club in November before I knew what was wrong with me.

Simply Right™ 4X Probiotic Digestive Care Supplement - 84 ct.

10mg of Bifidobacterium infantis SD-5845
15mg of a Proprietary Probiotic Blend of
Bifidobacterium lactis
Bifidobacterium longum
Bifidobacterium bifidum

I figure it can't hurt. If anyone knows different, let me know.

I read that Pineapple juice is good for this... "The bromelain in pineapple juice may also ease inflammation in digestive disorders, such as ulcerative colitis and Crohn's disease, according to a study published in the 2008 issue of 'Clinical Immunology.' "
But I have read a lot of contradictory stuff. I figured since I had it, I would try it. But if seems that is a bad idea, I will stop.
Posted 2/13/2014 8:19 PM (GMT 0)
And yes, you are really right Bananagirl, I am really confused.

So, remission means my symptoms are gone and I feel like me again?

Until I reach that to-be-dreamed-of day, I take a higher dose of one of these drugs.
Once I feel OK, I take the same thing, just a little less of it?

Since I realized this is what I have, I have read lots of stuff here and in books and if anyone ever feels normal again, I haven't come across it.

Of course, once you feel normal, you usually go back to your real life, so I am probably not getting a good overview here.

My grandmother had lotsa issues, then colon cancer and was pretty miserable till she finally had her colon removed. This is probably what she had. I was a little kid then and she was a pretty private person. 'Course after her colon was removed, she lived a healthy life and died at 88.
Posted 2/13/2014 8:33 PM (GMT 0)
Hi Not Happy, Welcome to the forum and sorry that you have to join our little club.

I would agree that you should def. try rectal meds (specifically Rowasa) to try and get the bottom healed up. It is the hardest most stubborn area to treat and it causes some of our most unpleasant symptoms. There is also Canasa, Cortifoam, Cortenema, Anucort hc (you may want to search these, all rectal meds). Even though you have Pancolitis, rectal meds are still the way to go imo.

Also, the oral mesalamine meds you are taking are all used to get into remission...once there, than you can sometimes scale back to a maintenance dose. So I would think of them more as all of the time meds, but you take more when in a flair up. Once you see which one works best for you...def. look into Rx assist programs. For example...my Lialda costs only $10/ month with the savings card that I got by contacting the company direct. There are some resources about this on here. I believe the other meds may have savings options as well. Shame that it is so $$ to be sick.

Also you may want to experiment w/ fibers such as Metamucil which I know seems strange but it will help for D as well as C. Go slow with it as well as any probiotics.

Let us know how you are progressing. Hopefully you will be in full remission asap.
B
Posted 2/13/2014 8:34 PM (GMT 0)
"So, remission means my symptoms are gone and I feel like me again?

Until I reach that to-be-dreamed-of day, I take a higher dose of one of these drugs.
Once I feel OK, I take the same thing, just a little less of it?"

almost. some people never feel like they did pre-UC. if you can get your symptoms manageable so they don't control your life, that's your goal. i think with some of the 5 asa drugs (like what your doctor gave you) there are flare doses and then you can decrease to the maintenance dose. with the other drugs like immunosuppressants and biologics, you stay on that dose that is working unless you get some weird side effects and have to lower the dose or stop it.

i think any food you can eat that is supposed to lower inflammation is a good idea. i follow an anti inflammatory diet, too. i took bromelain supplements for a few months but i didnt notice a difference in symptoms.
Posted 2/13/2014 8:43 PM (GMT 0)
Thank you!
I have the Metamucil that I had to take before the colonoscopy.

They said I should try to avoid fiber as much as possible.

So, is it good for now? Or is that something to try later?

Previous to this I was ridiculously healthy. Exercised regularly. Cooked everything from fresh ingredients, made my own bread. Never had to even think about my insides. I bought a book just to figure out what I had in there under my skin.
Posted 2/13/2014 8:44 PM (GMT 0)
(Also had to look up what "imo" meant.)
Posted 2/14/2014 2:51 AM (GMT 0)
When I'm in remission I feel total normal and healthy.
Posted 2/14/2014 3:35 AM (GMT 0)
My mom knows someone with UC who takes lialda and gets it for $10 a month she said using the card. I am not personally on this medication, I take asacol and it is $850 a month until I meet my deductible. Luckily my deductible is under $2000 so I have met it really fast, however its so expensive upfront. I hope this site maybe will help you, but I am just going off of a google search about the discount. I don't know any other details other than she got the card from the pharmaceutical company and only pays $10 for it. http://www.lialda.com/lialda-pharmacy-card.aspx

Good luck!
Posted 2/14/2014 1:49 PM (GMT 0)
The $10 only applies if you have a copay for meds. For example, if your insurance has a $35 copay for the medicine then Lialda will pay the $25 difference, giving you a cost of $10. Some plans, such as my old one, have zero copay and I had to pay the entire cost of the medicine up to my deductible (which was $6000). The medicine cost a little over $600 per month. The maximum discount on the Lialda card is $120 so if you are paying hundreds of dollars for Lialda, the most discount you can get is that $120, which still causes you to pay hundreds of dollars per month. Most insurance plans have a copay so most would pay the $10 but some plans don't have a copay so the $10 would not apply to them. Lialda isn't going to pay over $600 so you can get the med for only $10.
Posted 2/14/2014 3:59 PM (GMT 0)
Yep, garylouisville, that's me. Even after I hit the $6000, I pay 30%.
Good to hear that normal is possible, susans53.

I already feel SO much better than I did!

Thank you everybody!
Posted 2/14/2014 4:47 PM (GMT 0)
awesome new name !

:-)
Posted 2/14/2014 5:20 PM (GMT 0)
soystud, how long was it before you could go without meds?

I know I need them now. I tried for over a year to fix this with food (or the lack there of), supplements, etc. before I finally had to be practically carried in. I don't even remember talking to the doctor, although my husband says I did. He says I even made Star Trek jokes that all I needed was the salt since I came back to life with an IV of salt water.

And I understand the need for the low residue/low fiber diet right now.

I guess it's just nice to know that someone can actually go back to "good, healthy food, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with."

Good news! The sores in my mouth and nose and all over my lips cleared up this morning! I look so much prettier!
Posted 2/14/2014 5:32 PM (GMT 0)
nice to know that you can still joke when your body has hit the s*it fan !

I agree, that is good news - we should all look much prettier - although, I'm not sure my wife would agree to that for me ;-)

loooooooong time, to answer your question - almost 10 stinkin years - but hey, it is what it is - I'm just thankful it wasn't 20 -

don't get me wrong tho - if the drugs had kept working, I would still be using them - I was lucky to find out that going grain free was the answer to a happy colon -

I think i'll always have some lingering issues - just like being born with blue eyes - can't really change it -

keep smiling :-)
Posted 2/14/2014 6:28 PM (GMT 0)
for me personally, salad and whole grains cause nothing but trouble. i get my veggies by cooking/steaming them & having them with some rice & chicken stir-fry style.

you could try using psyllium husk powder to firm things up.
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