Just Starting SCD BUT Seeing Backward Steps Already

Hi, Adam and fellow UC-ers.

I have never done anything like this before, so am a big newbie!

I have been so private about this disease for the past ten years,

but have kind of reached a breaking point.

And now it seems I talk about it endlessly. ;-) Anyway, I have UC, was diagnosed 10 years ago. I have been on steroids – A LOT. This past year has been dreadful, and I’ve basically been in a constant flare, treating with prednisone. And lots of it (did I mention that?) My doctor, who I’m not thrilled with, wants me to start Imuran. I am terrified of this for several reasons. So, have been staying on the prednisone and hate, hate hate it. But I can’t seem to get off, as once I do, the bleeding and cramping starts again.

I have JUST learned about the SCD diet (yes, in 10 years no one has ever mentioned it!) and started it almost 3 weeks back. I have not cheated at all, but basically went right into the full thing, eating most legal foods, since I was not in a bad flare up at the time, as things were still being controlled by the steroids. I’ve been feeling pretty good, and really proud of myself for sticking it out without cheating (I’m not a very disciplined person.) But, the past few days the bleeding has returned, and seems to be worsening. I am so frustrated because I don’t know 1) if the diet will work for me, and 2) how long I can let this go without upping the pred again. Or worse, Imuran. I know it is a process, and want to be able to let myself go and be on this train…but the fear is kind of overpowering. Does anyone out there have any words of advice – or comfort – for someone who is just not sure if the diet will actually work? I want it to, and will commit to it. But I feel like after 2.5 weeks eating so well my body should not be going the other direction, you know?

Thank you, Adam, for this excellent site which I have also just discovered. It really is comforting to know that others are out there dealing with this horrid mess too.

 

Submitted by “GLT” in the Colitis Venting Area

 

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5 Responses to Just Starting SCD BUT Seeing Backward Steps Already

  1. Catherine
    Catherine Radley November 20, 2011 at 12:29 am #

    Hi, I went through exactly this with starting SCD while on massive doses of pred about a year and a half ago. I thought it was all going great until I tried to transition from pred to another steroid – it was meant to have less side effects, but didn’t have any effect at all – and then massive flare within days.

    I don’t understand why, but it really seems that your gut doesn’t necessarily heal on pred. It masks the symptoms but some of us are not lucky enough for that the result in healing. What SCD intro diet does, is give everything time to heal properly. That’s why it doesn’t seem to work to just jump into eating SCD legal foods.

    When I started SCD again, doing intro properly, in October last year, my flare calmed in days and was healed in weeks. Same thing again earlier this year after a bout of food poisoning triggered a flare. Within 6 weeks of the flare starting, I had a colonoscopy and was told I was in remission. No signs of colitis at all!

    So, long story short, I’d suggest you do the intro diet, and phase into the full SCD. You can get a great explanation of how to start off here (http://scdlifestylebook.com/).

    Good luck,

    Catherine

    • Gwen November 20, 2011 at 8:58 am #

      Hi, Catherine – Thank you SO much for your encouraging response. Also, to backtrack, *clearly* I am new at the posting thing since I didn’t even say my name! Urgh. I’m Gwen, am 36 years old, and was diagnosed at 25. I take a LOT of asacol (400 mg x 12 pills/day.) I have been on pred for basically the past year and a half now, as high as 70 mgs for probably a longer period of time than is good. I have a beautiful 3 year old daughter, and want to have another soon. Thus my increasing panic over the threat of Imuran.

      I agree with you about their effect – it just doesn’t seem to do much anymore. So I am back to chicken soup, eggs, yogurt, and broiled meat patties for a few days. I remain hopeful (though it is sometimes hard to tell) and really wnat this diet to work. It is just hard to stay positive when the bleeding is back.

      I can’t tell you how much I appreciate your comment. Thank you so much — can I assume you are in remission now? That is wonderful!

      Many thanks,
      Gwen

  2. Jo November 22, 2011 at 3:17 pm #

    Hi ladies,

    I just wanted to comment here too. I’ve had colitis for 3 years, only badly in the last year and a bit. I started SCD 3 months ago and haven’t been very disciplined about going slowly, therefore have had ups and downs. However, last week, I was feeling brilliant, in fact was on here saying so. I thought I had made it!

    Silly girl. I have had really bad cramps for the last few days – you know when you’re so bloated you feel like your belly’s a barrel (and I’m only small)? And waking up with stomach ache and yet not running to the loo, almost feeling constipated – strange for me.
    So, all I can conclude is that I’ll have to go back to the intro diet and do it properly this time – phasing legal food in very gradually. It’s so hard when you start feeling better and hungry and the fruit is right there, as are the home-baked coconut flour muffins.

    I really need to get this under control as we’re embarking on IVF again in the new year (after 2 failed attempts), and it’s not going to work unless I can get my inflammation under control. Chicken soup, here I come (again).

    Good luck both! At least we have a great support network here – cheers Adam!

    Jo

  3. Gwen November 22, 2011 at 6:29 pm #

    Hi Jo – Really appreciated your post. Somehow it just lifts my spirits to hear from others who are sharing this experience — its a powerful thing! Thank you!

    So, I am on day 2 of going backwards and doing the intro thing again. And the D has been worse the past two days. Is that die-off? Or am I just the one person that this won’t help!?!? I am really hoping its not that…I just don’t know how long to keep going before I say this isn’t working, you know? Patience is not my strongest virtue.

    I’m sorry to hear about your regression. I really hope starting over works for you – for us! I hear you. I am so sick of the soup and there are all these recipes out there for yummy baked things! I am actually kinda excited about the SCD cooking – when everything is on the table so to speak! I have had a terrible cold the past couple of days which I think has actually helped b/c I don’t want to eat as much. ;-)

    I also wanted to say that I am right there with you on the pregnancy thing. I, too, want to have a second child, and I want to do it now! But I am so worried b/c of the colitis, and so afraid that I’ll have to do some horrid medication while pregnant (my first pregnancy was absolutely smooth-sailing, thank goodness. I didn’t have a flare until she was almost 4 months old.) I realize that you are having the double worry of whether or not the IVF will take, before even getting on to the worries of pregnancy with UC. (How many times do I use the word “worry”, seriously.) I really wish you all the best with the IVF, and hope that everything goes beautifully for you.

    Thank you again for writing — will you keep me/us posted on how the diet goes for you as you start back with the soup?

    Gwen

  4. Jopoppy November 23, 2011 at 4:27 pm #

    Hi Gwen,
    I think you’ve just got to be really patient with the diet and give it at least a month before judging whether or not it’s going to work. For me, I get the feeling that it just controls symptoms rather than help us heal completely. I really don’t mind the diet, although i’ m not confident in my ability to stay plain. I think fruit is not agreeing with me at present, so that’t what I have to avoid for a few weeks and see how I go. Have you tried making the yogurt? It’s great,especially with a dash of honey & vanilla essence. I’m considering investing in some digestive enzymes too, although mixed reports on whether or not they’ll help. I’ll try anything to sort it out to be honest – looking into acupuncture and possibly reiki(spelling?) healing. I’m so desperate to be a mum & I’m 36 too, so time is ticking on.

    Good luck with everything, and yes, let’s stay in touch with our back to full health progress!

    Take care,
    jo

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