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Flareup after 2 years in remission and FRUSTRATED!!

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Ulcerative Colitis
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Posted 9/6/2007 9:38 PM (GMT 0)

I am grateful for the last two years without symptoms of UC.  I should have contacted my doctor for a supplement medicine at the very suspicion of a flareup.  I honestly thought I was going to snap out of it, but alas, it has progressed into a place I certainly don't want to be. 

Anyway, looking back, I should have recognized that the canker sores I was getting in my mouth was an indicator of what was to come.  It took about a week before the cramping set in, and then another few days before the once-a-day trip to the bathroom turned into 5+ trips, complete with blood and diarrhea.  Ugh.

I guess since it's been awhile since I've had to deal with this, I'm not sure what to expect of the Canasa I'm now taking (1000mg supp at night).  I know it has worked in the past, but I can't remember how long it may take.  I am on 2400mg Asacol 2X per day, and that's the level that got me in remission.  I did the prednisone thing two years ago, but tapered off of it after having taken it off and on for 2 years.  Thank goodness I am no longer using that.  I don't plan to go back, if at all possible.

So, if anyone has any anecdotal information or experiences, I'd love to hear them.  My husband, who is currently deployed (but never really understood my situation) will be gone for another 2 months.  My two toddlers aren't much help in conversation either. :)  So, there's my sorry story for now.  Trying to see the light at the end of the tunnel.

Thanks for listening.

Posted 9/6/2007 10:30 PM (GMT 0)
Were you on Asacol at a maintenance dose during your remission? Or had you stopped all meds?
Posted 9/6/2007 10:49 PM (GMT 0)
Oh, yes, I stayed on the Asacol throughout. I haven't thought ever of stopping it. Heck, I didn't even want to change vitamins since it was all going so well. My maintenance dose was the one I mentioned above. My gastro said that whatever it took to get me to remission is what I would need to stay there. I could have sworn that after my colonoscopy last summer that he said to see him in 3-6 months since everything looked good and that maybe we'd decrease/take me off the meds. I must have been hearing things under the influence of sedatives! :)
Posted 9/7/2007 2:26 PM (GMT 0)
I too had a long remission (16/17 months) on an Asacol maintenance dose. I started to flare just as I was finishing my bachelors degree and was waiting to hear back from graduate schools...I can only assume the stress from my last round of finals and not knowing what I was going to do if I didn't get into school caused the flare. Anyway, I made an appt after a month of flaring, but didn't mention I was flaring...thinking that it was no big deal (they'll just have me up my asacol, right?). Bad idea, I call in May and they didn't see me until July. I went on Rowasa enemas for a while, and they worked, but when my GI told me to stop them, my flare came right back. I tried using them again to no avail. Its been a year and a month since then (steroids and remicade treatments in between) and now I'm on 6MP, with no sign of improvement just yet (only been 5 weeks, almost). I do however have a raging cold with a low grade fever that won't go away (never get sick)! :x For anyone else who has just started to flare, go see your doctor...asap!
Posted 9/7/2007 2:56 PM (GMT 0)
Snookers - sorry to hear you're in such a spot. The canasa can take a while to work - espeically if your running to the toilet frequently. How many per day are you using? I would recommend calling for Rowasa and using those nightly until you're over the flare, then tapering per Quincy's instructions. I might even use the Canasa in the AM (or around noon) to supplement. Then make sure to rest, rest, rest and stay hydrated! Rest could be interesting with two toddlers!

I agree - prednisone is something to stay away from!

Hope you're feeling better soon!
Posted 9/7/2007 3:41 PM (GMT 0)
"UC can flare up at any time!"-- words of my 1st gastro in 1980. It's a good idea to keep a supply of oral + rectal 5-ASA meds on hand at home always-- just in case. The doctor should be willing to update your Rx periodically so that you can get a new batch to replace what ages out. Best wishes for you to get back in remission ASAP. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 X 3 Colazal daily for July flare in descending colon; should be in remission soon)

Posted 9/7/2007 5:57 PM (GMT 0)
Has anything about your diet or supplements changed around the time you started having symptoms?
Posted 9/8/2007 1:11 PM (GMT 0)
The only thing I can put my finger on is the increased level of stress prior to my flareup. I had spent the summer with my two boys in another state with my parents (husband is deployed) and my flareup occurred shortly after my return trip (driving) across the eastern half of the US. I know I was experiencing anxiety at that time too. When I've been in remission, I can eat anything, and I mean anything! But, now, I'm obviously watching what I eat and drink. So, I know it was not a change in diet or supplements, but stress.

One thing that did change, is that I am now taking my birth control pills concurrently, skipping the placebos, so as not to have a period. My OBGYN said that is perfectly fine to do that. I changed that after this flare started, so I don't think that is it either. The change in hormones is minimal, according to her. I did this to alleviate the physical stressors during my period. cramping, bloating...the whole nine yards.
Posted 9/8/2007 1:49 PM (GMT 0)
Hi, I think that stress and hormones are a huge factor in flare ups.  I ususally flare 3 months after a stressful event.  I have flared after breastfeeding my first child and flared after giving birth to my second child.  The worst flares of my life!!!!  Prior to this last flare in May, I was in remission for 3 years on Salofalk 3grams/day and something called Primal Defense (probiotics), as well as slippery elm/marshmallow root and l-glutamine twice a day.  I am currently on Cyclosporin (yuck) and Imuran, I am hoping to get off the Cyclosporin in the next month or so.  If I can't stay well,  I am going to try the above mentioned treatment again before I go consider colectomy.  My advice to you is to try the primal defense etc...  it worked for me.

Posted 9/8/2007 2:57 PM (GMT 0)
I have tried the Primal Defense in the past, but I stopped when I got pregnant. My UC was mildly active during my pregnancy and the minute that baby was delivered, I went into remission! Funny how we all respond differently. I nursed him for 8 months with no flare at all....and then continued my remission for the next almost 2 1/2 years. My first child, on the other hand, put me in the worst flare I've had. That was shortly after being diagnosed in late 2002. So, it does become hard to second guess. I hope, koathecat, that you can find your solution!!
Posted 9/8/2007 3:36 PM (GMT 0)
I know for me stress affects my stomach, haven't tied it into any UC flareups yet, but I don't see why it wouldn't affect it.

My husband doesn't quite get it either, he just always wants to think I will be okay........I call myself a realist, he calls it pessimistic.

Hope you are able to get your flare under control!! Look into Rowasa, that helped me when I was first dx'd.
Posted 9/8/2007 4:38 PM (GMT 0)
Hi, just out of curiosity, what sex are your children?  I was fine with my boy (first pregnancy), and then sick with my girl (this latest pregnancy), I am convinced that estrogen plays a role in inflammation.  I wish that they would do some research on this, I think that there has been some research on the birth control pill (with estrogen) causing an increase in flare ups...  The other thing I was told is that prolactin is pro-inflammatory, which probably explains why I had to run to the bathroom everytime I tried to breastfeed my daughter!!!!  UGH!  I was diagnosed with UC over 13 years ago and have never been offered Rowasa...  I have been on Asacol, Dipentum, Salofalk, Cortifoam, Salofalk enemas/suppositories, Prednisone... 

 

Posted 9/8/2007 7:10 PM (GMT 0)
I have two boys. I have used Rowasa in the past, but for some reason I can't use it very well. For one, I can never seem to get more than half of the bottle used and then it seems that it's not long before what did get used has to come out! Retention hasn't been the best. Maybe I need some Rowasa pointers, because I do think it makes sense to use it in times of flareup. I tried that Proctofoam at one time too.
Posted 9/9/2007 1:07 AM (GMT 0)
Hmmm, so much for my estrogen theory!!!  LOL!!!  I wonder if Rowasa is similar to the Salofalk enemas, they are also difficult to hold when you are flared!  I also stopped taking primal defense when I got pregnant this time, but I think that I should start it again.  I am just scared to start anything new while still on cyclosporin.  My gut definately feels iffy these last couple of days though, feel like another flare is coming on...

Posted 9/9/2007 2:14 AM (GMT 0)
I agree as well, the Rowasa enemas are very hard to keep down when flaring, much harder this time around than last time I used them. I find that it can take anywhere from 2 to 6 minutes before the sense of urgency wears off (when laying down, standing after I take one is out of the question). Does anyone know if there are suppositories that are just as effective as the enemas?
Posted 9/9/2007 12:50 PM (GMT 0)
I am taking the Canasa suppositories and they have worked in the past, but I think unless your disease is limited to the very lowest part of the colon, the enemas would probably be more effective. I may call and ask about the proctofoam again, as that may reach a little farther than the suppositories, but is not as liquidy as the enemas.
Posted 9/9/2007 7:17 PM (GMT 0)
Yeah, I have left-sided UC. I hate the feeling of the enemas and trying to keep them in for two hours is difficult at best. If it works though I'll take it over immunosuppressants any day. I've been off of 6MP for almost 48 hours now and I've still got this come-and-go fever. :(
Posted 9/10/2007 2:23 AM (GMT 0)
Hi, Carlow, have you ever been on Imuran, or is 6mp your first experience with this class of drug???  Did your doctor do a bld test to see if you could metabolize the drug?  I am going to be starting it tomorrow and I am a little scared...  I have been on Imuran for over 12 weeks though and tolerating it well except for the hair loss....

Posted 9/10/2007 3:15 AM (GMT 0)
koathecat: I think I saw your post earlier about switching drugs. I meant to comment but I felt I didn't have enough experience (never taken Imuran), and I didn't want to be a downer. Yes, my GI did the TMPT test and apparently my enzyme levels (from my original blood tests before I was treated for my UC) were on the high side. According to him, he has had problems getting people "therapeutic" on 6MP when their enzyme levels were as high as mine. He recommended I keep taking asacol to reduce the enzyme level...although I never heard back as to whether or not it changed because of my asacol intake. Its ok to be a little scared to try the 6MP, I was. My doc told me I should know in the first day or so if I could at least tolerate it (I was told 3-5% of people are severely allergic, no way to test). Just give it time to kick in, my symptoms have noticeably improved (everything but urgency and pain when having a bm) in the last couple of days, irony for sure somewhere in there due to the fact that I had to stop treatment two days ago. Supposedly my GI wants to rechallenge me on the 6MP before considering switching to Imuran...so we'll see. I'm more looking forward to my remicade infusion next Monday. Anyhoo, I hope it works for you....it supposed to be very effective!
Posted 9/10/2007 2:56 PM (GMT 0)
Snooker: After taking my third Rowasa last night, since starting them up again, I suddenly recalled some helpful tips on how to take the enema. I believe the instructions tell you to lay in certain positions. The one I chose is laying on my left side with my right leg flexed about perpendicular with my waist...kinda like making a figure 4 out of your legs. I then wait for about a half hour to 45 minutes to make sure I don't have a bm or gas, because if you do and you try to take the enema its a disaster. Anyway, the real key is to relax when you take the enema. The last two nights I would clench after about halfway through taking the enema because the urgency to go was intense. The clenching, I've discovered, only makes it worse. Instead, after about halfway though when the urgency comes, I deposit the rest of the Rowasa as quickly as possible while relaxing, well, my sphincter (sorry, don't mean to be so detailed, but it is necessary). I also try to focus on relaxnig the muscles that surround the lower part of my colon...it sounds counterintuitive I know...but for me it helps quite a bit. I still have a sense of urgency, but its not nearly as intense or lasts as long as when I deliberately try to hold it in. I usually stay in that figure four position for about a half hour, then I lay on my stomach so the enema can reach farther into my colon. I usually move several times in my sleep too, so it gets good coverage. I Hope this helps!
Posted 9/10/2007 5:09 PM (GMT 0)
Hey, Carlow! Thanks for the tips! It has been so long since I have attempted it, and actually, I think I was pregnant at the time, so everything was all mashed together anyway. That is definitely my next step if the Canasa doesn't seem to work. I think the relaxation part was my problem....mind over matter, I suppose. Thanks again!
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