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UC flareup or something worse?

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Posted 12/15/2011 10:18 AM (GMT 0)
I posted a thread a recently about my first UC flareup that started after I caught a cold. I'm still having the same symptoms with blood and mucous, although the bleeding isn't as bad as it was before I was given the medication. My UC is left-sided and my current medication is 4000 mg of 5-ASA daily (not 2000 mg as I said in my previous post).

Anyway, my question is this: is this a temporary flareup or has my UC somehow developed a permanent resistance to 5-ASA? I so confused right now, because up until this flareup began, I had been symptom free for two whole years when I started the 5-ASAs. I'm scared to death of being put on other medications and having to cope with a whole new bunch of side-effects, so I haven't told my doctor yet. :(
Posted 12/15/2011 2:12 PM (GMT 0)
Which medicine are you taking? Are you on any rectal meds?
Posted 12/15/2011 5:38 PM (GMT 0)
More likely not resistance, just undertreated if you're not on rectal meds.
q
Posted 12/15/2011 7:20 PM (GMT 0)
I agree you need to start the mesalamine or cortisone enemas immediately.  I prefer the hycort enema I find it more effective for getting things under control.  Many like the mesalamine.
Posted 12/15/2011 9:07 PM (GMT 0)
Yes, but I don't understand why this is happening in the first place. I've been on oral 5-ASAs (Pentasa/Asacol/Salofalk) for two years, and they were working perfectly up until this flareup started at the end of November. What changed? Is my UC spreading?
Posted 12/15/2011 9:41 PM (GMT 0)
Max, I don't want to worry you but I did build up resistance or 5ASAs became less effective. My GI said most people are not able to use meslamine long-term for maintenance of UC. She said it works for many for a few years but eventually the majority end up moving on to stronger medications. I don't know if this is true or if she just said it to make me feel better. Whatever the case, I had to start 6mp. I definitely wasn't under-treating with mesalamine, I was on the max dose + rectal 2x a day (even steroid foam for a while). I even tried switching to different formulations before I gave up on it as a treatment. On the positive side, I've been stable on 6mp for a while now and it's not so bad. I don't have significant side effects - the worst is probably vivid dreams and my UC is under control. I tried a course of prednisone before resorting to 6mp and even with pred + 5ASAs + rectal meslamine/steroids, I wasn't able to taper off prednisone without my symptoms coming back.

It happened to me one day out of the blue. I quickly went from one stool a day to blood, cramps, urgency, 10+x a day. It was a major flare with no indication it was going to happen & while I was on Asacol/Canasa.

Try not to stress, it's probably not the case for you. Get on some rectal meds, steroid & 5ASA if you need. I am sure you will improve. If not, there are options and it is common to have to go to a different option so it's not just you.
Posted 12/15/2011 11:49 PM (GMT 0)
I know you're only trying to help, but now I'm starting to fear the worst. I don't think I can get 5-ASA enemas without getting a prescription from my doctor, and getting an appointment with him might take weeks. I do have access to some rectal hydrocortisone foam, though. Would that work? How would I taper off it once I start it?

I've also been told that the body can develop an intolerance to certain foods overtime, just as I developed a mild lactose intolerance at around the same time I got UC, though I still drink half a cup of milk every day. At the moment I've got lots of gluten in my diet, and I was thinking that I might benefit from switching to a gluten free diet. Would that help at all?

Post Edited (Max89) : 12/15/2011 5:42:48 PM (GMT-7)

Posted 12/16/2011 1:21 AM (GMT 0)
If you use steroid enema's there is no taper necessary for using them for under 3 weeks- (per prescription and package insert)

Carlie

(I checked mine for you)
Posted 12/16/2011 1:49 AM (GMT 0)
They're foams, not enemas. I think they're meant to be used before sleeping, and stay inside the colon all night as opposed to enemas which only stay in the colon for 30 minutes. I'm still deciding whether or not to use them, though. I'm a little worried about side effects or making my UC even worse.
Posted 12/16/2011 1:59 AM (GMT 0)
I would call the GI and ask them to call in some mesalamine enemas. Depending on how your feeling, you may want to use the foam. If you're seeing red blood, chances are that you're a little inflamed in the rectum and the foam will help. Usually I do them foam for a few days or a week, until I feel like my symptoms are gone and then I use it every other night for a week and then every couple nights, then stop. Hopefullly that nips it.

Try not to stress, it sounds mild and I am sure my situation is not common. There are many here who have treated with 5ASAs for MANY years.
Posted 12/16/2011 2:11 AM (GMT 0)
Would getting rid of gluten and diary products help as well? I've got a lot of both in my diet at the moment.
Posted 12/16/2011 2:17 AM (GMT 0)
It never helped me but it helps some. It probably won't hurt.
Posted 12/16/2011 3:00 AM (GMT 0)
One last question by the way, the hydrocortisone foam is meant to be used every night for a week, and then every two nights for the second week, right? Did you also experience any side effects with the foam?
Posted 12/16/2011 3:34 AM (GMT 0)
I was on prednisone at the same time so I can't tell if I had side effects. I had terrible side effects from the prednisone already. I use things usually until my symptoms feel stable enough to taper. If it takes 2 weeks, I use it for 2 weeks, then go to every other night. If you have instructions from your GI, follow them. You can't use the steroid rectals long term but a couple of weeks or a month isn't long-term. I was using it longer than that and I am okay.
Posted 12/16/2011 1:08 PM (GMT 0)
Max89,

Foam can be used during the day and night its easy to retain so if thats all you have on hand use it at least twice a day.  Is it proctofoam or cortifoam the cort is stronger than the proctofoam. No need to taper foams.

Enemas are used in the evening and do stay in for the whole night not just 30minutes.  As you get used to them the longer you will be able to hold them in.

I find hycort to be very effective.

If you find you have a slight intolerance to lactose get rid of all the lactose and gluten is another culprit.  I have had great success cutting out these things.

Take a good probiotic at least 2 x a day to replace healthy bacteria in the colon.

If you have a empty enema bottle add a little warm water and empty the oil from vit e capsules into it and insert it in the evening.  The vit e helps to heal and stops the bleeding.

oral and rectal mesalamines along with hycort have been the only meds that I have ever been on since 1992.  The key is to identify your symptoms as soon as possible and start treating rectally before things get out of hand.  For me once my stomach starts gurgling after I eat I know something is wrong.

Posted 12/16/2011 6:19 PM (GMT 0)
puffed rice, it's cortifoam. Should I be worried about experiencing any side effects from it? This is going to be the first time I've used any steroids, and I've seen their side effects on other people having to use them for their UC or Crohns. Because of that, steroids scare me more than the UC itself.

Post Edited (Max89) : 12/16/2011 11:22:59 AM (GMT-7)

Posted 12/16/2011 6:45 PM (GMT 0)
Max I think using a steriod rectally is far less troublesome than if you were on oral steriods. I have used steriod nasal sprays and have never had problems that I would have with taking say predinisone. I would assume a rectal steriod would be pretty much the same.
Posted 12/16/2011 8:13 PM (GMT 0)
Max89

Steroids scare me as well I was given prednisone years ago during a bad flare and it is still sitting in the cupboard I refuse to take it.  I have seen the side effects that it causes and don't want any part of that.

Steroid enemas are a little different.  I use cortifoam often when things start to turn and have never experienced any side effects.  It is actually more effective than taking meds orally.  Hycort and cortenema do reach higher up in the colon and treat more area so depending on how severe your inflammation is it wouldn't hurt to use both(foam and enema).

I also take Mezavant 4 pills 4.8g daily.  So by taking the mesalamine oral and rectal meds i have been feeling pretty good.  I just need to pay close attention to symptoms and treat them immediately instead of waiting till its a full blown flare like i use to do years ago when i knew less about UC.

Posted 12/17/2011 1:33 PM (GMT 0)
Max89,

I agree with puffedrice, it is critical to keep inflammation down as much as you can, you can do that by:

  • adding rectal meds
  • cutting out all dairy, wheat, gluten
  • adding probiotics, like VSL #3
  • eating less anti-inflammatory diet
  • adding astaxanthin
  • adding omega 3 or krill oil
  • adding slippery elm powder (it's natures equivalent to the mesalamines)
  • cutting out all high fructose corn syrup (have to read labels it's in just about everything)
  • drinking lot of good water

Let us know how you make out.


 

Posted 12/20/2011 7:45 AM (GMT 0)
I've cut out dairy and gluten, and have been noticing less blood and mucous for the past few days. I'm still getting lots of constipation which is probably due to an inflamed rectum, so I got fed up and decided to cortifoam myself for the first time (even though I was saving this for the very last resort). It took me longer than usual because I couldn't find the orifice, but hopefully I'll see some results in the morning.

Post Edited (Max89) : 12/20/2011 12:50:23 AM (GMT-7)

Posted 12/20/2011 1:16 PM (GMT 0)
Max89,

Max, I'm glad you've noticed reduced blood and mucuous as a result of cutting out gluten and dairy.

Posted 12/21/2011 8:54 AM (GMT 0)
Keep on the good work max.
Did you manage to book an appointment with your doctor?
My doctor was the same i tooks ages to have an appointment however there are 2 options for you:

-your doctor can fax or mail you a new prescription to cover the time until your new appointment.

-GP are entitled to prescribe some meds too! I only thought it was the specialist who was entitled to prescribe my meds but i lived with a doctor last year and she prescribed me lots of them and said they are entitled.

I would go for the first option as usually the specialist is aware of the problem and waiting time and usually takes only 2 to 3 days by the mail!
Posted 12/21/2011 9:02 AM (GMT 0)
I've booked it in January, but that's fine since I want to give my new diet and the cortifoam some time to act. I'm hoping to get back on my maintance diet of 4000 mg 5-ASAs as soon as possible. The truth is that I'm not really looking forward to seeing my GI since I'm afraid he might change my prescription and give me something stronger.
Posted 12/21/2011 2:01 PM (GMT 0)
Max89,

I have always found that when I start to flare and I cut out the gluten/all grains I see improvements.  I'm lactose intol. so I dont eat any dairy but it has always made me feel worse.

Don't be afraid of the cortifoam, it's much better than taking oral prednisone.  You might want to ask for hycort enemas they reach higher up in the colon than the cortifoam.  cortifoam is great for using during the day.

Its good to have both in the cupboard just in case, and if symptoms get worse they are there before things get out of control.  Thats the key to identify symptoms immediately and treat rectally.

 

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