Please Help – Using SCD But Still Have Pain and Blood

Introduction:

I’m the husband of a pregnant girl with UC. Trying SCD with some success, but still having pain and blood even though stools have hardened. please help.

My Pregnant Wife’s Ulcerative Colitis

I’m pretty desperate here.  My wife is 15 weeks pregnant and in what would SEEM to be the tail end of one of her worst flares ever. We think it was brought on by all of the nausea and vomiting from the pregnancy. While she was going through that, her doctor. recommended she eat lots of foods that “nourish” the intestinal walls such as overcooked white rice and to drink lots of ginger ale, etc. to settle her stomach. So, I think (given that everything she was ingesting was pretty much as “illegal” as it can get on the Specific Carbohydrate Diet) that all exacerbated the severity of her flare like 5-10-fold. we’ve been trying the SCD while her doctor bounces her from drug to drug.

In the downtime between each drug, her stools have hardened, but then each new drug has always made her go back to more, bloody diarrhea. So, with the scd being the 1 constant, we’re convinced it’s working and, at this point she’s pretty much only on the predisone med-wise.  She’s having good, formed stools, but still having LOTS of pain and bleeding. we’ve cut out dairy and have her on a probiotic that’s scd-legal.  Just not sure why she’s still having the pain and bleeding and I’m afraid her gastro is going to push [more] to get her on the cimzia shots, which we’re fearful of for her sake and the baby’s.

What really sucks about all of this is I think

the steroids is really affecting her mind.

I thought roids make people overconfident, but in her case they just seem to make her more angry and desperate. Is it normal, when on the SCD, to have your stools harden, but still have the seemingly worse pain and blood? If so, how long does it typically take for those symptoms to go away too?

Thanks in advance for whatever insight you can give.

Medications:

She’s been on asacol, a generic of asacol, then back to asacol, lialda, a couple of others and her dr. is pushing her to get cimzia shots. she’s currently [at the moment] only on predizone though.

written by “AMC-C-Bad”

submitted 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.

cimzia

6 Responses to Please Help – Using SCD But Still Have Pain and Blood

  1. amc-c-bad December 27, 2011 at 11:26 am #

    BRIEF UPDATE: I forgot to mention that she’s now on Balsalazide (and the Prednisone). Her morning pain seems to be *gradually* lessening each day. Her blood in stools seems to also be decreasing as well (some stools have none). Most of her stools are varying degrees of “partially formed” (but in the middle of the night it’s almost all liquid, accompanied with LOTS of gas and pain/cramping). Given this update and everything I wrote in the post, on the surface, it seems like she’s improving overall, but she does have more frequent bowel movements (like 6-8/day vs. she was down to like 4/day a week or so ago). I personally think it’s because she’s eating a little more, but not totally sure. However, this pain she’s experiencing is so demoralizing, not to mention her body’s working overtime to grow a baby and, with the SCD, it’s tough to get enough calories for her and the baby so she’s been losing weight. We’ve cut out dairy for the last week or so and that doesn’t seem to have done much of anything. Just still trying to figure out where this pain is coming from and we’re now wondering if she might also be fighting an infection. Anyone have or know anyone who’s had similar if not the same experience? Thanks in advance for whatever insight you can offer.

    • Amos Wilkinson December 27, 2011 at 4:49 pm #

      Hey amc. Sorry to hear about your wife. Glad to hear SCD is helping a little. The SCD has definitely helped me out a lot. I was diagnosed with pancolitis initially 9 years ago and the SCD keeps me off the scarier drugs I’ve been on like prednisone and 6-mp etc. Often I’ll end up with formed stools on SCD but some mucous/blood occasionally. This to me means most of my colon is working but I’m flaring in the distal end (proctitis). This may be the case with your wife. The SCD may be helping (formed stools) but its that distal most end that’s being stubborn. See if your doc can prescribe her Canasa (1000 mg) suppositories at night and/or rowasa (4g) or cortifoam enemas if the canasa doesn’t do the job. It helps to tread the colon from both ends and the suppositories/enemas are much less toxic than oral prednisone. If your doc doesn’t listen or care, get a new one. Hope that helps. Good luck.

  2. Amos Wilkinson December 27, 2011 at 5:09 pm #

    Forgot to mention you could also try adding a probiotic if you haven’t. I’ve tried tons. Saccharomyces Boulardii has helped more than any of the others I’ve tried. Jarrow makes the cheaper one (have her take one 3 times a day) or you can buy Florastor. Good luck.

  3. George in Napa December 28, 2011 at 4:07 am #

    Hi amc-c-bad,
    Sorry to hear about the UC problem that your wife (and you indirectly) are having.
    I can tell you from my own experience that prednisone does affect a person’s mind. I am usually a very mellow guy, however if I take 30 to 40 mg of prednisone (per day), after 3 or 4 days I turn into a grouch and start snapping at people. It drives my wife nuts. Two months ago when I was at 40 mg., I became pissed off simply because our cat was looking at me….. how dare that cat stare at me!

    When I am taking a lower dose (15 mg or less) my mind starts to return to normal. My biggest problem at the lower dosage is insomnia……yeah, its 3 a.m. right now…… I would love to be in bed right now sleeping. (I have been at 10 mg. for about 10 days).

    I also do the SCD diet. It does not put me into remission but it makes my flares less severe.
    I hope that things start to improve for you guys.

    George in Napa

  4. LA Nicole
    Nicole December 28, 2011 at 3:21 pm #

    Being on Prednisone a year ago made me CRAZY. I was so fat and angry. And I couldn’t sleep, which seemed extremely anti-thetical for one’s body to heal oneself.

    I can’t sleep right now without getting up 3-5 times in the middle of the night with horribly painful gas and cramping and what I call, bloody and mucous-y “coffee grounds”, but at least I’m not crazy angry and uncomfortable from the steroids.

    I am rooting for your wife, and us all, that we find what we need to live well and happy and – to be able to to go to the bathroom – normal, healthy human functions, without pain and anguish!

    Love and Light to you and your family.

    Nicole in LA

  5. amc-c-bad January 3, 2012 at 12:41 pm #

    Thanks all for your support and comments. We tried the Canasa, Amos, but it didn’t work. We started on an SCD safe probiotic and prenatal vitamin and hope that’s helping. No way to really tell with so many variables in the get-this-flare-under-control mix and no time to really give any 1 thing its own few days to test/see. We gave in and started the Cimzia injections because at this point she just needs to get this under control asap and start putting on weight for her and the baby’s sake. We think it’s working as her symptoms have shown improvement. With so many variables in the mix though, it’s hard to tell what’s doing what, exactly, and she still has some symptoms of a flare. So, we’re just trying to keep to the diet, with some exceptions to get more calories in her, and seeing where these injections take us. Her dr. might wean her off the roids which I think will help immensely with the mental battle which no doubt fuels the fire. Fingers crossed.

Leave a Reply