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Feeling really discouraged; is this a moderate or severe flare?

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Posted 10/2/2008 5:01 PM (GMT 0)
Hello all--
I am feeling really discouraged today.  I've been in this flare since mid-August, and on my new med regimen (12 Asacol a day and 1 Canasa at night) for a couple of weeks, and don't feel like I'm getting any better.  I've started writing down exactly what's going on, and so I can say that, since midnight this morning, I have had 5 episodes of D (it's noon now).  The blood seems to be decreasing, but in general, not much seems to be improving.  Or, rather, it seems like things are getting better for a day or two, then it's back to this kind of stuff.  Do I go back to my GI, or wait a while longer to see if the new meds work?

I know that my symptoms are much more manageable than many others', and that my medications are still on the mild/low end of the spectrum, and I would like to keep them there if possible.  But this is the pits, and it makes me very nervous to have to go stand in front of my students for 3 hours at a time!  I just wonder if this will ever get better.  It feels like this (as well as some other life stressors) has taken over my life!  I walk down the aisles at the grocery store and just see big fat "NO"s everywhere I look.  I haven't been working out as much as I like because I either lack energy, don't feel well, or am nervous about being in the middle of a run with no loo in sight.   I haven't slept through the night in a long time.  I am also losing whatever humor I had about this situation!!!!  ARGH.

Sorry.  Just needed to get this off my chest to people who get it.

TusMom

 

Posted 10/2/2008 5:10 PM (GMT 0)

have you gone on prednisone yet? I am thinking that your doctor might be a gradual treater, so he is slowly working your meds up. When I first got diagnosed it was at 12 asacol a day right at the beginning, and even then they said it would be 2 months before I saw improvement.  I was bleeding so much that once the biopsy came back they put me on prednisone to stop it. I don't know if that is a good thing because I just got diagnosed in August myself.

(((((((((((((((Big hug)))))))))))))))))))))))))))) just want you to know I care and I think this too shall pass.

Posted 10/2/2008 5:19 PM (GMT 0)

Thanks, SunshineonmyFace. 

No, I have not gone on prednisone yet, and don't want to, especially after reading some of the accounts of it here.  But sheesh...the worse I feel, the more I think I'll try whatever it takes.  (I'm still holding out on that Specific Carb. Diet for my third-to-last option, though, because it seems so hard to manage.)

It's funny how having a chronic disease can, at least for a while, play with your sense of yourself.  I never would have thought I would have been a chronic-disease-sufferer...not because I'm so virtuous in my habits, but just because you don't think about it.  And now it's what I think about almost all the time!  My mom has recently been diagnosed with stage four pancreatic cancer, and although I am OF COURSE concerned about and involved with her situation, lately, I've just been wanting to feel better myself, first and foremost.  Then I can deal with the rest of it.

Sigh.  Anyway, thanks for your thoughts and support!

Posted 10/2/2008 6:33 PM (GMT 0)
Tusmom
i too am in a flare and cant get out. I have been bleeding for two months, cort enemas, Rowasa and Canasa. I started the SCDiet with about 30 different supplements. It is my 10 year anniversary today and i cant even get off the couch. I am right with you on the frustration and ARGH!! My poor kids just want to see my laugh! I have a colonoscopy scheduled for next Tuesday. i am thinking she is going to suggest Prednisone but after reading here i too am scared, so many side effects. Hang in there, if we have positive attitudes and stick with it, we have to get better :).
Posted 10/2/2008 6:45 PM (GMT 0)
If it were me, I'd be asking for the prednisone. It works, and sometimes asacol is not enough. Rowasa can't reach all areas. I have found either the medicine works right away or it's not going to work.
I hope you feel better soon
Posted 10/2/2008 7:06 PM (GMT 0)

Toriblue--

I'm sorry you're having to spend your anniversary on the couch.  These flares take so much away from us, and it just seems so unfair.  How is the SCDiet going?  Sometimes I'm convinced I'll try it, other times convinced I won't.  But desperate times call for desperate measures, I guess. 

Peety--

I think I just need to get back to my GI and see what she thinks is the next step.  Did you have trouble with the prednisone, in terms of side effects or tapering off, when you used it?  I'm seeing a holistic MD next month (I've been seeing an acupuncturist for years), so maybe he'll be able to test for food issues, too.  At this point, I'd be happy to hear I have to go gluten-free!

Thanks!

Posted 10/2/2008 7:21 PM (GMT 0)
Hmmm, maybe you could try gluten free now and see what happens....couldn't hurt.

I get the side effects from prednisone, they are weird (pounding heart, minor teeth aches, ravenously hungry, moon face, a little blurry vision) but for me they go away once I'm down to 10 or 15 mg. And I've been taking it for flares for more than 20 years. But some people seem to have more serious, permanent effects. I monitor my kidneys and bones, and I'm OK. I have good healthy genes, maybe that's why. And I'm not the hysterical type.
Posted 10/2/2008 8:26 PM (GMT 0)
     I've had UC for ten years too.  Back or rather...still on prednisone, saying still because I've only been off it for a total of four weeks since April.  I have osteoporosis and high blood pressure.  Never get much of a moon face.  I do have terrible insomnia and cannot seem to sleep at all without the ambien cr.  Hate taking another drug but it beats pacing the floors at 2 a.m..  Funny prednisone does NOT give me an appetite and I read on here that it does that to many people.

Posted 10/2/2008 8:38 PM (GMT 0)
OMG...you do NOT need prednisone!

How many times were you going to the bathroom before the doc upped the Asacol?

From August till now .... how have your symptoms changed?

Do you have urgency and or rectal pain with bms?

It's possible that part of the problem is that you're on too high a dosage of Asacol.

You should also be using the retention enemas at this point...or if you don't want to try that yet...use the Canasa more often.

Oh...are you using probiotics?

You should consider to add a fibre supplement to bulk up the stool a bit.

quincy

Posted 10/2/2008 8:51 PM (GMT 0)
She might do well on prednisone, some of us do. Relax.
Twelve asacol is not too high of a dose when you're trying to control a flare. It saved my colon more than once.
Fiber supplements would be catastrophic for me when I'm flaring.

So, everyone is different!
Posted 10/2/2008 9:07 PM (GMT 0)
I too was very worried about taking pred but I was in a flare for seven months and tried everything else.  Canasa, Lialda, cort enemas and combinations of all three - I kept getting worse and worse.  I finally was put on pred and felt so so so much better.  I did have some side effects but they were so minor compared to the cramping, bleeding, sleeplessness, urgency, etc...  I just tapered completely off and the side effects have completely disappeared although I am having a few symptoms again and am worried I am headed back to a flare...I will go back on the pred in a flash if needed!  NOTHING else helped me at all!

Posted 10/3/2008 12:55 AM (GMT 0)
Thank you, everyone, for your thoughts.  I will probably go back to my GI soon to get her perspective, see my holistic MD and find out what he has to say, and then head back to my nutritionist.  Nutrition has to be key, but I am so confused by reading various books and programs; some of them give exactly the opposite advice.  Too bad there's not one single, defining test that would lead to one single, definitive "cure."

Quincy, I'll get back to your questions later; right now (having just gotten out of the bathroom after a miserable experience, with a slight feeling like I might also throw up; oh, such gory details), I need to go sit down and rest for a while.  But thanks for the thoughts.  I'll be back in touch.


TusMom

 

Posted 10/3/2008 2:27 AM (GMT 0)
TusMom, I am seeing a naturopath also (holistic doctor) and she said there were times that prednisone were needed. I don't know if you need it or not. I think that the reason you are taking a little longer in healing is because your doctor is a slower treater, that doesn't mean it's a bad thing!! I just brought up the prednisone because without it I have heard it can take 2 months before you build enough of the asacol in your system to see results, on it's own.

I also have to use a suppository, on top of my Lialda.
Posted 10/3/2008 4:16 PM (GMT 0)

Well, if I must try the prednisone, I admit I'm feeling a little better about it.  I'm also feeling better because I was actually able to sleep through the night!  A small but important victory!  But, quincy, here are some answers to your questions:

--trips to the bathroom before increasing the Asacol: I can't say for sure, as I was not keeping track as I am now.  But maybe a total of 4-6?

--change in symptoms since August:  when this flare originally started, I was attributing it to something else, so wasn't looking at it with a UC eye, so to speak.  It wasn't until after Labor Day, when I found this forum, that I convinced myself it was a UC flare and not endo-related.  But I think the diarrhea has gotten worse, along with urgency and cramping.  But then it gets better (even before I went to GI in mid-Sep, I thought it was getting better), then worse, then better, then worse.  More blood, less, more, less.  I do not feel the back pain I did at one point, but I don't recall having trouble making it through a trip to the grocery store a month ago, either.  I don't think the Asacol increase or Canasa has changed much of this.

--urgency or rectal pain with bms?  urgency, yes, rectal pain, a little, not much.

--probiotics?  yes, with meals, as well as Digestive Advantage (day 3 now),fish oil, Forvia vitamin.

--fiber supplement: the last time I tried some Benefiber at bedtime, I had quite a day the next day!  But I've had similar days since without the fiber, so maybe it had nothing to do with that.

Thanks!

TusMom

Posted 10/3/2008 7:06 PM (GMT 0)
     Doesn't it just get to all of us?  Everyone soooo different.  Prednisone is the ONLY drug which helps me.  I am not at all happy about this and neither is my doctor.  Been on it with this last flare since April.  Only off it for a grand total of four weeks, not back to back either.  Off it two weeks last week of July and first week of August....flared....back on 30 mgm, tapered, off it for two weeks in beginning of Sept...flared again.  Doctor put me on 40 mgm with a taper of 10 mgm every five days.   Seeing him on Monday...again.  You can see by my list below all the crap I am taking for this.  By the way, fiber does a big negative number on me while in a flare.  Makes symptoms much, much worse.
Posted 10/3/2008 8:25 PM (GMT 0)

Hey Christine1946--

Sorry to hear that you can't keep those flares gone for good sans the pred.  How frustrating.  Have you ever tried the Specific Carbohydrate Diet?  I've read the book, and *if* she's right about it, it seems the SCD is the "cure."  But who knows if she is?  And there is so much conflicting dietary advice it becomes paralyzing to me. 

Here's hoping your gut calms down and you get some good news at the doc on Monday.

TusMom

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