Spasms, Canasa, The patch, “The Pill” etc…

Hi all! Just discovered this site… cool site! Sorry for long post, but I’ve got a few questions I’ve been wondering if anyone else has dealt with, so figured I’d just roll em all together if that’s not too confusing:

I’m a 40-something female, diagnosed with UC almost 15 years ago. After that first flare when I was diagnosed, I went into remission for 5 years, then another flare. Might have had one more flare the following summer (all my flares since that first have been summertime events.) During those years, I never used anything but Asacol, and Canasa & Levbid during flares.

Fast forward six years – i.e. to two years ago. Had the next flare, which was my worst ever – was totally debilitating and had to go on prednisone. The prednisone worked and I gradually went into remission for two years. Ever since that flare, my colon has been a bit more spasmy than it used to be. Doc thinks that’s just from IBS. However….

I started flaring again last week, a week after some surgery on my sphincter. Spect the surgery triggered it, especially since my horrible flare two years ago was a few weeks after a routine colonoscopy that the doctor said looked absolutely wonderful. So I think procedures in that part of my body trigger it, at least for me. But, whatever the cause, I’m flaring. Doc says he wants to do sigmoidoscope to evaluate me for the harder drugs. Given my history with problems after procedures, and that fact that I don’t want the harder stuff, I’m holding off for now, in favor of DIY…

Given that my bowel symptoms always get aggravated by monthly stuff, I decided to go on birth control pills that my Gyn had offered me for some of my female problems. I’m hoping that fewer hormonal swings might help. I’m also trying the nicotine patch. Many years ago, I accidentally discovered that becoming a closet smoker for a brief period of time helped my GI symptoms. Now I learn that this has been established. No way I’m going to smoke now – so I’m trying the patch. I’m guessing I should quit one of them though, as it’s probably dangerous to use the pill and the patch together. So far I’m only able to use the patch in small time increments though, as it’s difficult to tolerate, being a non-smoker.

I was using Canasa at the beginning of the flare, but it always gives me the runs and seemed like it might be making things worse – my problem is, I can never tell if it’s really making the flares worse or just giving me an annoying case of the runs. I asked the doc, and he said, try going without. Trouble is, the flare is so inconsistent, I can’t tell if it helps or hurts.

A big problem I’m having now is very noisy spasms. I have to start teaching classes in a week, and am worried about not only having to run to the bathroom, but also having my classes disrupted by my noisy colon! Levbid usually helps – but not always… .

teacher with colitis

So my questions:

1) Does anyone else have these noisy spasms? If so, what do you do to control it?
2) What have others’ experiences been with Canasa? Is diarrhea normal? Or does that mean my colon doesn’t like it?
3) Any success or failure stories with nicotine patches – or birth control pills?

Thanks for any words of wisdom!

My Medications:

I take Asacol for maintenance. I take Levbid to keep spasms & bathroom visits down when I get in trouble. Levbid works great! Most of the time…

Submitted by Hopskotch in the Colitis Venting Area

 




Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

6 Responses to Spasms, Canasa, The patch, “The Pill” etc…

  1. Heidi McDonald September 16, 2011 at 1:03 am #

    1. Taking VSL #3 (strong probiotic) has gotten rid of my crazy gut sounds. I had LOUD gurgling and gassy noises.
    2. Canasa stopped working for me after my colitis spread farther up my colon. I switched to Rowasa enemas which reach further up. That, with my oral meds seems to reach both areas of inflammation and really helps with that stubborn proctitis which is where my flares seem to start, and then went travel up.
    3. I’ve been on the pill for 15 years and it doesn’t seem to have effected me one way or another, but when I was a teenager and smoked, I did have long periods of remission.

  2. Nanda September 16, 2011 at 5:55 am #

    Hi,

    I would just like to say i understand your stress about teaching a class whilst on a flare up!! I am a student physiotherapist and have to go on placement in 2 weeks! i have no idea how i am going to cope with the fact i need to go to the toilet every second!
    I also tend to get my flare ups in the summer for some reason!
    I just wanted to ask you, what do you mean the nicotine was a bit too much for you to handle because you are a non smoker – does it give you side effects?
    And the only herbal way i have found to control my noisy spasms is to have black salt on everything that i find makes me gassy. You can get black salt from any herbal store!
    Hope that helps!

  3. stephanie September 16, 2011 at 7:09 am #

    I have had good luck taking Lomotil, helped with the urgency and frequency a lot. Good luck!

  4. Hopskotch September 16, 2011 at 4:23 pm #

    Hi Nanda!

    Thanks for the reply! I’ll look into the black salt. Re: nicotine patches: Apparently, if you don’t smoke, you don’t have the nicotine tolerance that smokers do. So I’d put the patch on (7mg – the lowest they sell) and get side effect: nausea, woozy, rapid heartbeat. From what I’ve read, this is par for the course – non-smoking UCers who’ve been successful in nicotine patch trials had to be weaned up by starting with very low dose patches. Or in some cases, apparently the side effects just outweighed the benefits for nonsmokers. I was trying to do like an hour a day with the patch… did it for a few days, but after last night I think I’ll call it quits for the patch. It makes me so sick that it obviously causes stress which in turn aggravates the UC. Also, FWIW I bounced it off the GI nurse at my medical group, and he says the nicotine studies have been debunked. I can’t find any mention on the web of contradictory studies myself, but just passing on that this is what he said.

    Re: teaching: When I have to teach during a flare, Levbid’s been the best thing for me to control the potty breaks. Be sure to bring a bottle of water though, as it sure does make your mouth dry. Also, in my case I know my worst potty runs will be in the morning, and possibly at night. Happily I’m able to teach in the afternoon, when it’s less of a problem. However if I have to be at a morning meeting, then I have to get up realllllly early so I can get the morning runs out of the way first… In some cases if I’ve felt that spasms or potty runs might disrupt a meeting, I’ve let the group know in advance I was having a UC flare and might have to step out. Even though I don’t like to tell everyone about my UC, I think getting that out in the open relieves enough stress that it’s worth it. That’s all with adults though… if you’re teaching young kids it might be more difficult to explain. Anyway, if you haven’t tried Levbid, I think it’s worth asking your doc about it. That’s been the main drug that’s made it possible for me to keep teaching the past 15 years.

  5. Hopskotch September 16, 2011 at 4:40 pm #

    Hi all! I wanted to hit Nanda’s questions separately, but thanks everyone for your responses! I’ll look into VSL#3. Have been taking Align (though I sometimes forget!) Looks on the web like some people like one better and some the other?

    Also – re: summer flares. I’ve read and been told by my doc that’s very common in UC patients – though apparently nobody knows why it is. Something in the air? Something people eat? I sometimes wonder if it’s just heat itself. I know my gut is sensitive to heat – even sitting with a laptop directly on my lap can send it into spasms.

    Re: Canasa vs. Rowasa. I had that same situation where my UC used to be just proctitis but now it’s spread to pancolitis. However, in previous flare they tried me on Rowasa, and it just seemed to aggravate it. The nurse said at the time some people get irritated by the action of the enemas. So I’m back to trying to see if Canasa will do the trick if the flare hasn’t spread too much… We’ll see…. (went back on it last night.)

    Having paid some more attention to my spasms the past couple days – they seem to be the process of my colon doing whatever it does that causes me to pass mucus, because they’re always followed within hours with several potty runs of mucus-passing. So I guess, the spasms are sort of the colitis-in-progress.. Last night, as I did one other night during this flare, I took a half a klonopin before bed. (They’re anti-anxiety pills, but were given to me for occasional insomnia.) The awful spasm-arama I was in the midst of calmed down for the night and I had a reasonably good morning and day so far today. (No mucus marathons, at least.) Whether it’s because it actually calms the colon muscles or because it calms down my stress (from the flare, which of course turns into a vicious cycle making the flare worse), klonopin does seem to do some good. Have a call in to my doc who prescribed them though, as you have to be careful about klonopin not to get addicted, etc…. so I’m not sure I should take it every night. But… another possibly useful thing…

    I’ll look into the black salt and VSL #3! Will ask the doc about lomotil too. Have some imodium, but was always a little nervous about taking during a flare. And thanks all for the suggestions!

  6. Hopskotch September 16, 2011 at 4:47 pm #

    Oh, one more comment about Levbid. Sometimes, GI docs say they’ve never heard of it. Apparently this is because it’s been so long since anyone has prescribed it by the brand name, younger doctors have never heard it. The generic names are Hyomax and Hyoscyamine. These seem to get fewer blank stares. :-)

Leave a Reply