Flaring again, please help

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Sara14
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Date Joined Mar 2007
Total Posts : 4538
   Posted 7/20/2009 10:19 AM (GMT -6)   
I started flaring again about a week ago and am feeling sicker than I have since first getting UC. I quit smoking 2 months ago and the first month and a half I felt like I was in remission. Then I had some major stress happen and I ate really crappy for a weekend (2 whole pints of Ben&Jerry's by myself...I know...stupid...) and now I'm bleeding again badly and waking up 4-6 times a night with the urge to go with more urges during the day. Usually nothing comes out but bloody mucous. My rectum hurts and my tummy keeps telling me I have to go to the bathroom even though half the time nothing comes out. Lots of gas too...

I started using Rowasa nightly again about a week ago when this first started happening but I am only getting worse. Usually, when I start the Rowasa I feel better within 2-3 days. I called my doctor and I guess he is gone for the next month. The nurse is checking with another GI there and is going to call me back with advice. I am scared though. Even though I had been mildly flaring ever since diagnosis, I had (sort of) forgotten how badly this sucks when it gets worse.

Should I ask for Cortifoam or keep going with the Rowasa for a few weeks first? I am scared of the Cortifoam sort of. I've never used it, but my GI seems pretty anti-steroids in any form unless absolutely necessary. Please give me advice. Thank you.
25 years old; diagnosed March 2007
Currently: I feel almost back to normal...could be in remission finally or very close at least?
Asacol, 4 tabs, 3xday; Rowasa nightly; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops; Ortho Tri-Cyclen


jewelknit
Regular Member


Date Joined Jul 2009
Total Posts : 32
   Posted 7/20/2009 10:23 AM (GMT -6)   
Get in to see a doctor to make sure nothing else is going on.

AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 7/20/2009 10:31 AM (GMT -6)   
I agree--get into see a doc, because it sounds like you probably need Prednisone to kick this one in the butt! Your symptoms sound a lot like my usual flare and the rectal meds only do so much--for me it is usually inflamed further up than they can reach so I need oral too. I have never used cortifoam so I'll let someone else speak to that. Good luck and feel better.
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


Sara14
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Date Joined Mar 2007
Total Posts : 4538
   Posted 7/20/2009 11:37 AM (GMT -6)   
Thank you for your advice. I wish my doctor was not going to be gone for a month. I've never been on pred and I'm scared to use it b/c my GI says once you use it once you typically need it every time to get a flare under control...plus all the side effects, etc.
25 years old; diagnosed March 2007
Currently: I feel almost back to normal...could be in remission finally or very close at least?
Asacol, 4 tabs, 3xday; Rowasa nightly; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops; Ortho Tri-Cyclen


seconder
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Date Joined Jun 2008
Total Posts : 610
   Posted 7/20/2009 11:39 AM (GMT -6)   
Quincy is pretty knowledgeable about ending a flare with rectal meds and without pred, so hopefully she'll come along soon.

I hate to say it, but it's the smoking. Are you so anti-smoking that you wouldn't start up again?

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 7/20/2009 11:47 AM (GMT -6)   
I am anti-lung cancer, heart disease, circulatory diseases, bad breath, bad smell, hacking cough, emphysema, wasting money, etc, etc, etc. that are caused by smoking; so I guess that makes me "anti-smoking." No, I do not want to smoke again and will not smoke again. Is it normal for it to happen 2 months after quitting? Like I said, for the first 1 1/2 months I felt like I was in remission and I have never felt in remission since diagnosis. Smoking never seemed to help my UC...I still got UC even though I smoked. I guess it doesn't really matter the cause.
25 years old; diagnosed March 2007
Currently: I feel almost back to normal...could be in remission finally or very close at least?
Asacol, 4 tabs, 3xday; Rowasa nightly; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops; Ortho Tri-Cyclen


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/20/2009 11:53 AM (GMT -6)   
I understand.
 
I've been in a flare for well over two years, and it started almost three months after I quit smoking.  As a smoker I ran marathons and, except for some minor flares, was in uc remission for years and years.  If my current treatment doesn't improve the colitis by next month, I'll start smoking again.  And I'm loathe to do it,  but having lived with the terribleness of this disease for this long, enough is enough. 
 
Having a couple of cigarettes might get you through to your doctor's return.  You've already quit once, so you know you can do it again.  This time, come up with a plan to quit smoking with your GI.
 
Good luck.

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 7/20/2009 11:57 AM (GMT -6)   
I'm sorry you're not doing well either. I can understand where you're coming from. I personally do not want to start smoking again. I know I would just have to go through all of this again at some later date if I quit again. Anyway, thanks for your comments and good luck to you, too.
25 years old; diagnosed March 2007
Currently: I feel almost back to normal...could be in remission finally or very close at least?
Asacol, 4 tabs, 3xday; Rowasa nightly; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops; Ortho Tri-Cyclen


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/20/2009 12:06 PM (GMT -6)   
Sorry you're not doing well. Maybe give the Rowasa a week or so more, and take a Probiotic if you're not already. Then, if things aren't getting better, maybe consider a quick course of pred to get things back under control. You've also got a LOT of other meds to try, so I agree with you about not wanting to go back to smoking.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 7/20/2009 12:11 PM (GMT -6)   
Thanks, fruitgirl. I used to take a probiotic but I stopped b/c I doubted it was doing anything. I will start it up again. Should I keep taking my fiber supplement or do you think that is irritating things?

Did the Apriso put you into remission? That's cool you only have to take 4 pills/day.

This really sucks b/c my boyfriend just finished college (he was living 9 hours away) and now he is staying with me for a while but I have to spend half my time in the bathroom. Sorry to complain so much.
25 years old; diagnosed March 2007
Currently: I feel almost back to normal...could be in remission finally or very close at least?
Asacol, 4 tabs, 3xday; Rowasa nightly; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops; Ortho Tri-Cyclen


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/20/2009 12:21 PM (GMT -6)   
I don't know about the fiber...I don't take a fiber supplement. Asacol + Rowasa + pred put me into remmission. I did a pretty quick course of pred and came off it without any real problems. Then tapered the rowasa...went to doing it every other night, then to twice a week. After about a month of that, I switched from Asacol to Apriso, mostly for convenience. I was having a lot of trouble remembering my noon dose, and I knew that missing it all of the time would increase my risk for flaring. Also, I was seeing undissolved caps in my stool a lot. I've been on it about a month now, and I am still in remission.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 7/20/2009 12:24 PM (GMT -6)   
Cool. Thanks for sharing. Knowing that someone was on a quick course of pred without any real problems makes me not worry about it quite as much if I have to go that route. I'm so happy for you that you're in remission. That's awesome.
25 years old; diagnosed March 2007
Currently: I feel almost back to normal...could be in remission finally or very close at least?
Asacol, 4 tabs, 3xday; Rowasa nightly; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops; Ortho Tri-Cyclen


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/20/2009 12:27 PM (GMT -6)   
You're welcome, and thanks! I'm so happy to be in remission, too. My son is nine months old now, and is so active and playful...I know I wouldn't be able to enjoy him like I want to if I were flaring. I did a pretty unconventional dosing on the pred...a lot of people on here disagreed with it. However, if you want me to share what my doc prescribed, I will.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 7/20/2009 12:30 PM (GMT -6)   
Yes, that would be great if you'd like to share.
25 years old; diagnosed March 2007
Currently: I feel almost back to normal...could be in remission finally or very close at least?
Asacol, 4 tabs, 3xday; Rowasa nightly; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops; Ortho Tri-Cyclen


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/20/2009 12:36 PM (GMT -6)   
Ok, so here it is:

40 mg for five days, split into four doses (breakfast, lunch, dinner, bed)
30 mg for five days, split into three doses (breakfast, lunch, dinner)
20 mg for five days, split into two doses (breakfast, lunch)
15 mg for five days, all at breakfast
10 mg for about a week (waiting for GI appt to discuss the next step), all at breakfast
10 mg every other day for about two weeks (wanted to wait to quit until I got through a two-day-long job interview that required flying just in case I had trouble)
Done!

I did have some trouble when I got down to 10mg, but not until I'd gotten a horrible, horrible, horrible case of food poisoning. I know it was that because my SIL and I both had it at the exact same time after eating at the same restaurant. I was having some trouble with diarrhea again, but managed to get it all sorted out. I actually think avocado helped get me regulated again. I've been great since!
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 7/20/2009 12:58 PM (GMT -6)   
     Fiber really irritates me while flaring, makes it much worse.  The only fiber I use is on my rice krispie cereal in the morning and it is called Red Mill ground flaxseed MEAL...ground into a powder so as not to harm the colon.  I need some fiber as I also suffer from diverticulosis.  Sort of a catch 22 here.  You can purchase this at the your local grocery food chain.  I buy it at Shop Rite.  You need to sprinkle only one Tablespoon on top.  I also use Silk instead of milk.  Stay away from caffeine and dairy and try to adhere to a low residue diet.
     I cannot stay away from prednisone when flaring.  It is the only drug which helps me into remission.  Not that I haven't tried not to use it though. This flare started right around Memorial Day and I held off taking the prednisone till June 11th.  I'm also on 100 mgm of 6MP, Colazal, Cort enema nightly and Canasa suppository in the a.m.  My UC is located in the rectum and just as stubborn as can be to treat.  Good luck dear.  Hope you feel better real soon.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


Rio in Maryland
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Date Joined Nov 2007
Total Posts : 891
   Posted 7/20/2009 1:21 PM (GMT -6)   
Sara, I agree with fruitgirl that avocados are a great food to have if you're flaring, so maybe that might help you if you want to keep your diet simple and eat easily digestible foods for now.

If you're going to need steroids, I think that it's better to get cortifoam before starting on prednisone, because it seems to have milder side-effects. However, that also depends on how bad things are and on how badly the doctor wants you to get the flare under control. For me, cortifoam seemed to take a bit longer than prednisone to have an effect.

Some time ago, I tried starting smoking again to see if it would get a flare back under control, but it
didn't work and probably made things worse for me. Also, it then took quite an effort to get back off them.

Also, I switched from metamucil wafers to metamucil smooth and found that to be easier to digest.

Hope you're fine soon.
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine (stopped), 4800 mg Asacol
VSL#3 & Primadophilus Bifidus, Metamucil
Vitamin E enema or Asacol suppository occasionally


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 7/20/2009 2:09 PM (GMT -6)   
Thank you Rio and Christine! I have had that ground flaxseed and liked it so I will try that again. I will also get some avocadoes. That sounds really good right now.

Rio - Do you still take the metamucil smooth even when flaring?

Thanks again.
25 years old; diagnosed March 2007
Currently: I feel almost back to normal...could be in remission finally or very close at least?
Asacol, 4 tabs, 3xday; Rowasa nightly; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops; Ortho Tri-Cyclen


jewelknit
Regular Member


Date Joined Jul 2009
Total Posts : 32
   Posted 7/20/2009 2:31 PM (GMT -6)   
The first 2 times I was on prednisone it knocked out the flare up. Side effects the first time were insomnia, craziness, hair loss... but the next 2 times the side effects were minimal. Unfortunately it no longer works and I'm now waiting for 6MP to kick in. Can't figure out what foods other than dairy. alcohol, onions annd broccoli exacerbate flare-ups. This flare up has lasted 6 mos and I'm losing my mind.

Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 7/20/2009 4:09 PM (GMT -6)   
Yes, I have taken metamucil smooth when flaring as it's very smooth, so unlike other fiber supplements, I don't feel it irritates an ulcerated colon. And bulking up BMs leads to fewer a number of BMs.

I think ground flax-seed meal might still have a rough texture, so I'm not sure how good that would be. I know it's a fine powder, but when I tried psyllium husk powder, before trying metamucil, it was ground down to a fine powder (from Whole Foods) and I still felt it. But if you can handle it fine, then that's great.

If you need a quick energy boost, then try juicing some veggies too - carrots, spinach, celery is a good combination.
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine (stopped), 4800 mg Asacol
VSL#3 & Primadophilus Bifidus, Metamucil
Vitamin E enema or Asacol suppository occasionally


quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 7/20/2009 4:38 PM (GMT -6)   
OMG...you don't need prednisone.

Tell me why you quit the Rowasa before starting them again since flaring?

I've started back on my nightly enemas because I was starting to flare again. I know I'll be on them for about 2 weeks anyway.....I'm pretty much back to normal, but my flare wasn't too bad at all, however, this time I had a bit of blood.

Please be patient Sara...some of the bms last night are probably caused by the lactose in the ice cream.  2 issues, but hope you enjoyed the ice cream. 

Regarding the metamucil...I used to use the Smooth...(.not the sugar-free!)....after supper , but I'm using the capsules now and prefer them much better.

Consistency is a good thing...and I would suggest that you make an appointment with your doc for when he gets back and use the Rowasa consistently until you start to feel better. Then start to taper.

I think the bottom line is how much effort you're willing to put into the patience department.

Oh, you could ask your GP to prescribe the Proctofoam...it's a lower % of steroid and you could maybe use it in conjunction (in the mornings) with the Rowasa.

You could also ask the doc maybe for some dicyclomine to help with some of the discomfort, maybe that will calm you down a bit and help slow down your colon a teeny bit.

If you show some improvement over the week or two..it's working....you may need to stay on the enemas nightly for a month before you can taper.
My longest on the enemas was almost 4 months nightly...it was a tough time, but again...my doc's reaction was "we'll do the stool samples to be sure nothing is going on...but be patient", and I was.

Hang tough...try to take it in stride as best you can, but your flare will not go away overnight. I think you just haven't learned how to use the enemas effectively as of yet.

I'm happy to hear you quit smoking...that in itself will add to the issue, but it doesn't mean you cannot get through this as well. It might take a tad longer.

quincy


*Heather* Status: flaring...Asacol 3 twice daily; Salofalk enemas nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

Post Edited (quincy) : 7/20/2009 3:43:06 PM (GMT-6)


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 7/20/2009 4:53 PM (GMT -6)   
Quincy! Hi! I was waiting for you. haha. Thanks for the suggestions.

The ice cream was over a week ago, so I don't think I'm still having issues from that. Sorry, I wasn't very clear about that.

I didn't stop the Rowasa completely but I had tapered down to about once a week. I was kind of lazy with it though and I had been getting a bit lazy with the Asacol...missing more doses than I should have. Now I know better.

Now I have been back at nightly on the Rowasa for about a week or so, but I"m getting worse instead of better. Usually I start getting better by now. Is it normal to get worse before better? I can be patient with them...I was on them nightly for probably about 3 months straight in the past. I can be patient but this is just scaring me because it's reminding me of when I was first diagnosed...going 15+ times a day with just bloody mucous coming out, and waking up every hour at night to go too. At least the pain isn't as bad as it was then. Do you suggest I take the fiber while flaring? Thanks again for your post and suggestions.

Rio - Thank you again, too. Juicing some veggies sounds good. Maybe I'll get a juicer. I am scared to eat or even drink water, which I know is not good.
25 years old; diagnosed March 2007
Currently: I feel almost back to normal...could be in remission finally or very close at least?
Asacol, 4 tabs, 3xday; Rowasa nightly; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops; Ortho Tri-Cyclen


quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 7/20/2009 5:08 PM (GMT -6)   
Hi Sara....I think it all depends on how your flare has progressed with the combination of you only being on maintenance of once a week Rowasa, forgetting pills and quitting smoking. The ice cream isn't an issue, I wish I was there to share it with you..lol! What flavour did I miss?

Getting worse before you get better...well, depends on the where or how high the flare is. It also depends on how many symptoms you might show related to the inflammation present.

You're learning.....humbling isn't it?

Is your UC throughout or limited?

Curious what you eat during the day.....and if your allergy drops as well as the Viactive have artificial sweeteners in them.

The fibre supplement can help bulk the stool a bit, but if the rectum is inflamed and you have pooled blood or mucus...that will trigger the urge to go. Dicyclomine can help.

Could you maybe purchase the herbal cigarettes??? maybe just the action of using them 3 times a day might help?

What do you have for breakfast??

quincy
*Heather* Status: flaring...Asacol 3 twice daily; Salofalk enemas nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


psychocolon
Regular Member


Date Joined Jul 2009
Total Posts : 118
   Posted 7/20/2009 5:47 PM (GMT -6)   
Sara,
I know it is hard to be patient with meds when you are in a flare. However, just to give you an example, I have been using Rowasa enemas nightly for almost 8 weeks now and am just now starting to pull out of my flare. Also taking Colazal and Asacol too. It came after a real stressful event and the flare has not been like any I had before.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/20/2009 5:56 PM (GMT -6)   
I didn't suggest she use pred now, just if things don't start getting better soon, after she starts a probiotic again and is also back on rowasa nightly. Yes, I used pred to get out of my flare, but I didn't use it until I'd basically been flaring for four months. I guess I was just throwing it out there as an option if she really needs it.

Also, Sara, you might really want to consider Apriso or Lialda if you're missing a lot of doses with Asacol. My doc thinks that a big reason people have flares is because they are lax about taking their medicine (whether it's intentional or not!). It's amazing how much easier it is just taking it in the morning. And, I feel a lot less incumbered by my UC. I'm not one who minds taking meds, so it's surprised me how much I like it.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).

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