What is remission?

[sarahsoda29]

OK so here I am new to the whole Crohn's thing at this point. I was diagnosed in May, and still learning everything. Basically the whole diet thing isn't working...EVERYTHING gives me diarrhea....and then the next day I could eat the same thing and I'm fine. I'm on Balsalazide, and just finished my 2nd round of Prednisone. The first round I was on for 5 weeks (right after I was diagnosed), and then was off it for 2 weeks, then had bloody stools and the dr put me right back on it again. This time I was on it for 8 weeks. Today is my first day with NO PREDNISONE. But....nothing really changed while I was on it. I didn't have bloody stools and I gained alot of weight...THAT'S IT. I still had constant diarrhea, sore bottom, and no sleep. Still tired as hell, and still achy all over. I know most of these symptoms are pretty much going to be here to stay for me. Especially the Diarrhea. I know there's not much I can even do about that....and I know that writing down my diet to figure out what I can and can't eat isn't helping much...because I don't really know what triggers it....everything does! OFF Prednisone I go about 8 times a day, ON Prednisone I go about 5 times a day....so what's the point in even being on the Prednisone anyways if all it really does is make me get fat and not sleep? I'm hoping maybe there's something else I can do if I start to bleed again.

I guess I'm not really understanding at this point exactly what remission even is for us. Is it just....LESS diarrhea? LESS pain? If I can function day to day and go to work and be fine and just cope with the inconvenience...then amd I in remission? If that's the case, then I always WAS in remission....even in my worst pain back in January before I was diagnosed I was working 2 jobs. I was having the sweating stomach cramps but it would pass and I stayed put at work. I don't have those now, but I haven't since I got put on the Balsalazide. So....what do I need the Prednisone for? I'm frustrated that I'm 5'4" and I gained 20 pounds this last 8 weeks on it. I'm frustrated that I can't eat the healthy stuff it takes to lose weight. I'm frustrated that I can't sleep when that's also necessary to lost weight, AND help the Crohns. I'm frustrated I don't have enough energy to do light excercise to help both the weight and the Crohns. I'm pissed off I got it. AND I'm pissed off that I barely make enough money to pay for the medicine to take care it. Thanks for letting me vent. Any suggestions, words of advice, etc would be appreciated, because at this point I'm at a loss.

 

[Aussie]

Hi Sarahsoda, to answer your question, there are a number of ways of describing remission in IBD.

1. Clinical remission (easiest to achieve) - you don't have any symptoms from your Crohns, ie. your back to normal.

2. Biochemical remission - Normal CRP and faecal calprotectin.

3. Endoscopic remission (harder to achieve) - you get mucosal healing, ie. on colonoscopy, the inflammed mucosa has healed.

4. Deep remission - a combination of all three.

It sounds like you are a long way from remission. I know it might be a little controversial, but the evidence for mesalazine (including balsalazide) is very poor, there is a little evidence for sulfasalazine in mild Crohns colitis (no good in small bowel disease), so in essence you're not really on any maintenance therapy for your Crohns. Might I suggest talking to your doctor about achieving remission with exclusive enteral nutrition, will avoid the side effects of steroids, and then maintain that remission with Mercaptopurine. Or perhaps talk about biologic therapy which both induces and maintains remssion. Hopefully you'll feel a lot better when you Crohns is properly treated.

Best wishes.

 

[AuntieEm]

I'm glad you asked Sarah because I've been wondering the same thing. Thank you for the explanation of Aussie. Now to remember what "normal" is....

Auntie Em

 

[sarahsoda29]

Aussie thanks so much for that information...that makes a lot more sense to me! I do know that my dr had put me on the Balsalazide because he really wanted to put me on Azacol (sp?) but AFTER my insurance paid for it, it was $400 a month for me out of pocket, and I just simply can't afford to take it...so the alternative for me was the Balsalazide to bring down the inflammation...it's still $100 a month but at least I can manage that. In addition, the dr who did the Colonoscopy on me didn't completely look all the way through to the Ileum as MY dr had wanted him to, and so that was why he initially wanted me on the more expensive medicine...to make sure i was completely being treated, but I pretty much told him, "If you put me on that $400 medicine I'll just stay sick...that's my car payment!"...I have 4 kids to feed...I can't choose to pay $400 a month for a medicine and not afford to feed my family. So that's the story as to why I'm on a medicine such as this. I do go back for my checkup on October 2, so I'm going to ask him about what you suggested.

 

[sarahsoda29]

Aussie can you explain what you mean when you talk about "Exclusive Enternal Nutrition", and "Biologic Therapy"??? I will also look into talking to him about the Mercaptopurine you mentioned. Trying to educate myself before I go back in October.

 

[Aussie]

Exclusive enteral nutrition is a dietary treatment to induce remission, used a lot in paediatrics (doesn't stunt growth like steroids). Not quite as good as steroids, but no real side effects (unlike pred which has loads). It is quite restrictive, basically just specific nutritional drinks (ie. ensure, enlive, resource) and water. You take it for 6 to 8 weeks, it can start working within a few days.

Biologic therapy is injectional therapy that is an antibody against TNF (tumour necrosis factor). TNF is one of the major players in inflammation. We have Infliximab and Adalimumab here, you also have Certolizumab.

Btw Asacol is also a form of mesalazine, not much good in Crohns, definitely wouldn't be spending $400 a month on that one.

 

[sarahsoda29]

Thanks so much for the insight! When I first googled the Enteral nutrition all I got was information about using feeding tubes...and I definitely don't think I'm bad off enough for something like that. But I would consider doing the ensure type of drinks for a while if I need to. And I'm glad to hear that the Asacol probably won't help much either...takes the relief off the idea of spending the money on it. Sigh.

 

[CrohnsChicago]

Aussie thank you for clarifying!

I also was diagnosed in May of this year and am trying to wrap my head around this life of a "Crohnie" that I am doomed to live. lol.

I guess I should be working towards deep remission...if it is even possible for me...

 

[sarahsoda29]

U feel the same way...because according to the information above I have never been in remission. I started seeing symptoms over a year ago but just thought it was my 'bad system' until January when I couldn't do anything about the Diarrhea no matter how much Immodium I took...it always worked before!!!! Ever since January I've had issues. No change there. May was when they gave me a name for it, even though I had been doing lots of research and knew that's what they were going to tell me. So I wasn't shocked when my doctor called me himself to tell me....but that doesn't help the fact that now it seems I'm on a medicine that's not even what I should be taking at all. I literally just emailed all of this information to my doc directly to see what he says.

 

[sarahsoda29]

I meant I feel the same way...lol not U.

 

[AuntieEm]

I know I am so much better than 2 years ago but that I've never had "remission". There have always been some symptoms even on the trial drug but nothing like the other drugs they tried. Right now I feel I'm headed for a major flare and the trial ties my GI docs hands so have been reading up on dietary things to do. Plus I'm not forceful enough I guess with my GP. So will call tomorrow and get bloodwork ordered so I know for sure what I'm lacking.

Auntie Em

 

[mcmelly]

it is so refreshing to hear all of you tell whats on your mind i have all the same questions still on the steroids asacol ect. wondering about mmj if anyones doctor supports this have been doing alot of reading and it seems to be the way to go ! my doctor keeps pushing remicade! no way i can afford it! cant work yet its been almost two months not sure what to do! i am a waitress for 21 years at a very fast past resturant 8-10 hour shifts line out the door full time was alot of money now i sit scared as to how i am gonna feel tomorrow getting pressure to go back to work. I have a family to support just like many of you!! whats next!!?

 

[Rachel]

Sounds like you need better maintenance drugs! prednisone is not the answer. Diet probably won't help much if no drugs are working. You will be able to eat more once you get the inflammation under control. Be pushy and talk to your doctor. Good luck!

 

[Earnellzwifey]

Have you looked into getting help with meds cost through the company. My mom can't afford her insulin or liver meds and the company gives them to her for free for over ten years now.

 

[sarahsoda29]

So far no luck on getting my drugs through the drug company, because as it was stated before, I'm on Balsalaside, which isn't actually supposed to be prescribed for Crohns, only UC...and their manufacturer will only help if it's for UC...not only that but every coupon company I've tried only helps out if you DON'T have insurance which I do....so for now I'm stuck paying the higher prices. I did talk to my dr and told him I don't want to go back on the Prednisone and he wants to try Flagyl next????