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Starting SCD While in Remission? Any Advice?

LiLiA-fullMeet LiLiA:

I was diagnosed with UC in 2009. Had one moderate flare-up a year later which was controlled by prednisolone. Symptoms then went into remission but I then had a terrible flare which started in August 2013. That month I had some horrible “accidents” away from home and ended in hospital 3 months later. IV steroids failed. The inflammation was so bad that I was going to the loo 20 times a day, crying from the pain of straining. My saviour was Infliximab. 3 infusions of this eventually led to my first proper poo in almost 4 months! I came off the prednisolone gradually and then developed terrible myalgia (severe muscle aches that made me feel 100 years old!) Started on Mercaptopurine in March 2014. Horrible side effects like nausea, food tasting very strange and continued fatigue, but I persevered and as my dose was tweeked, things got better. My symptoms are now completely in remission and I feel well enough to look for a new job.

Some more background:

I’m a cup half-full kind of person and always try and look on the bright side of life. During my recovery time I trained for and completed a 26 mile walk through the night to raise money for Cancer Research UK. It was tough but my stubborn streak got me through! I love swimming and go regularly. I also love cooking and baking, particularly for family and friends. My family would probably describe me as a “feeder” as I strive to be a generous host whenever they visit! I worked in the Wine Industry for a long time and wine is therefore another passion of mine. But I also love watching any TV relating to property! Perhaps my next job will be as an Estate Agent, who knows!

Symptoms:

I am currently symptom-free thanks to powerful Chemotherapy drugs. I am always grateful to have a normal poo and will never take that for granted.

Starting SCD While in Remission?

UC has changed my life significantly. When you’re going through a bad flare and just about to crap yourself because you can’t get to a toilet, it makes you feel like a baby that has no control over it’s bodily functions! The shame of having an accident is just horrible, plus having to explain to colleagues that may not understand why you have to go to the toilet so much is really embarrassing. I have both a loving partner and fantastic supportive family and friends, so I feel very lucky that I can be open about my symptoms and feelings with them.

My partner and I have been trying to conceive for the last 2 years and have recently discovered that my last flare could have caused the scar damage found in my fallopian tubes. That was very distressing but IVF may be an option, so I’m not giving up hope just yet. I know that I have to stay on drugs to help me stay healthy during a pregnancy but I would rather be drug-free to be honest. I’ve been doing lots of research recently about the SCD after reading BTVC. I was recommended this diet by a fellow UC sufferer who was on the same meds as me, but they eventually stopped working. He has been on the diet for 2 years and is now symptom and drug free. I would love to try this diet but wonder if I will feel any benefit, given that I am well at the moment.

Can I ask if anyone out there has tried the diet whilst they’ve been in remission and therefore when will I know if it’s safe to reduce my meds?

Ironically, I need to lose weight and I have never suffered any of the weight-loss symptoms that seem to be so common among fellow UC’ers! I put weight on while on prednisolone and therefore I feel that if I try this diet, it will benefit both my intestinal health and my weight!

Despite the terrible 18 months I’ve just had, I’m thankful that (at the moment) I can leave the house without having to take a change of underwear! I’m very mindful of that and will enjoy every worry-free journey while it lasts!

Current and Previous Treatments, Medications and Supplements:

Pentasa-varying doses from 2009 to present.
Pentasa suppositories- helped during mild flares.
Prednisolone both oral and IV- worked for the first flare-up, did nothing for the 2nd.
Infliximab (remicade) Infusions x 3-The only thing that finally sorted out my severe flare while in hospital.
Mercaptopurine- Chemo maintenance drug that has kept my symptoms in remission since March 2014.
Vitamin D supplements- I was found to be quite deficient when I first started taking mercaptopurine.

written by LiLiA

submitted in the colitis venting area




mercaptopurine, pentasa, SCD

10 Responses to Starting SCD While in Remission? Any Advice?

  1. Brenda W
    Brenda M January 8, 2015 at 4:31 pm #

    Hi Lilia, I wish you all the best. Thank you for sharing about the fibromyalgia muscle pain after prednisone. I also had these after affects. I didn’t know what was going on but I assumed it was from one of the meds. I’m so glad to hear it’s not from the Remicade as it is working for me. Take care. Love and peace

    • LiLiA
      LiLiA January 12, 2015 at 4:33 pm #

      Hi Brenda, thanks so much for your comment on my story. My dose of prednisolone was changed around quite a bit at the beginning of my bad flare, so I was eventually on it in varying doses for almost 6 months. A few weeks after I’d tapered to zero dose was when I noticed the muscle aches. My legs and arms in particular. My partner would have to pull me up from the sofa (couch) if I’d been sat down for longer than an hour and even getting underwear on or blow-drying my hair could be a major challenge! I spoke to my gastro doctor and he believed it was the steroids, not the infliximab (remicade) that probably caused the myalgia and that eventually the symptoms would ease. Mine lasted a good 6 months but I tried to help myself by standing, walking and swimming as much as possible to keep active (I even set up my laptop on a chest height cabinet so that I could not even sit down while on the computer!) It did seem to go on forever and I felt like I was 100 (not 40) years old! But it did get better. I’m so glad that the remicade is working for you, long may it continue and I hope the aches get easier soon, Take care.

  2. Adam
    Adam January 9, 2015 at 7:04 am #

    Hey Lilia,

    Thanks for sharing your story. I think you’re questions is such a great question about when to taper the meds and how would you know the diet is working:) Thanks for asking it.

    I have spent the last 15 hours thinking about it, and I haven’t come up with some magic bullet answer. Maybe there isn’t one…I don’t know.

    But…

    I would think of this just about the same way with regards to all sorts of new treatments that are added to what one is already doing. Something like this:

    First, take a good look/feel/whatever you want to call it, and be true and real with yourself about how your symptoms have been right before you add anything new. Take a look at the stools your creating in the toilet, it helps to understand where you’re at and what may be different…

    Second, if you start the SCD eating great. You’re probably read the reviews of the diet on the SCD Diet reviews page here: http://www.ihaveuc.com/specific-carbohydrate-diet-reviews/

    So you’ll see there’s all kinds of different point of views, many positive, some negative etc…

    But start to see if anything changes with your body. I would fully expect for you to stay in remission if you are already. And, after that, if you notice some improvement, even if its just slight improvement in your stools for example, or whatever else. Maybe you have super minor cramps that you just barely notice (for example) right now, but they go away after the diet changes…(that is exactly the case for some people which is why I mention even though they feel like they are in complete remission prior etc…).

    That is how I would look at the introduction of the diet. But FOR SURE, you should make sure your treating Gastro doctor knows what you are up to. Especially if there are certain medications you are taking which needs to be tapered on a certain schedule (like for the folks taking prednisone who wish to stop or don’t need anymore…)

    Please keep us posted LiliA and best to you in 2015:)

    – Adam

    • LiLiA
      LiLiA January 12, 2015 at 5:34 pm #

      Hi Adam. Thanks so much for your very comprehensive reply to my post! I’m not sure if I should be flattered or slightly concerned that my question prompted 15 hours of thinking time for you! Either way, I’m pleased that you care and that I’ve been introduced to this site (which is very good btw). Now down to the nitty gritty and my response to your suggestions. My poo (or poop as those of you across the pond like to call it!) is actually really normal at the moment and I’m very thankful for it. After reading the BTVC book I assume that, as I’m not in a flare right now, I should follow the legal list and avoid anything illegal. I also presume that as i have no cramping or diarrhea, I wouldn’t need to follow the basic diet (ie just chicken broth, eggs and dry cottage cheese etc?). I have an appointment with my Gastro Consultant next month and can only hope that he is open to the idea of me trying this, as the diet is a drastic change to what I normally eat (I would be what us Brits might describe as a “bread monster” and unfortunately I love my potatoes so I’m not going into this lightly! We don’t really have naturopath doctors here but I’m thinking of gaining the advice of a homeopath instead.
      Well, we’ll see what happens. I’ll keep you posted with my movements, sorry, activities, sorry progress/news (it’s so hard to avoid toilet humour most of the time…simple pleasures eh?) Thanks again Adam, L ;-)

  3. Katy January 11, 2015 at 1:00 pm #

    Lilia, I too, want to get off Remicade big time. I am supposed to have another infusion in a week and I don’t think I am going to set it up. My colonoscopy was in Dec and it looked good, except for some scarring. I am 85% SCD/Paleo, taking strong probiotics and am including fish oil and metamucil. I go see an IBD specialist this Wed but have a feeling he is going to support what my GI dr says to stay on Remicade. No offense to this dr or my GI, but I live in MIssissippi and I don’t think they think outside the medbox at all down here. I wish I could find a good dr that believes in diet and had a medical background too. Would love to stay in touch with you. We could compare notes.

    • LiLiA
      LiLiA January 12, 2015 at 4:50 pm #

      Hi Katy, thanks for your reply, it’s good to compare experiences, especially as I live in the UK. I’ve got an appointment booked for Feb with my Gastro specialist so I have no idea what his thoughts on diet are yet. I really hope he chooses to support my decision as I would really like to try this diet out,100%. Can I ask, how many infusions have you had so far and how are your symptoms at the moment? I only had 3 infusions and they really helped me, but it’s a strong drug and I’d rather not have to take it again if I can avoid it. (It’s not licensed in the UK unless for emergency cases like my last flair when everything else failed while I was in hospital). I’m assuming that if your last colonoscopy looked good, then you’re in remission at the moment, right? I’m also curious to hear about how you cope on the diet? I’ve always been (what we call) a bit of a “bread monster” and I just love potatoes! So I’m struggling to imagine my life without those things! When you say you’re 85% SCD/paleo, I’m interested to know what food you eat for the other 15%? Before I start the diet I want to gather as much info as I possibly can! Do keep in touch and let me know how you get on next week. L :-)

  4. shelly in maine January 18, 2015 at 5:34 pm #

    Hi LiLia…no matter what you have come to the right place. One piece of great advice that my regular Dr. (A D.O.) said was when you are in remission is the best time to try things. SCD is not as hard as it seems…after a while. Another great site to help is pecanbread.com and SCD lifestyle. How can eating better and real foods be bad for you? Our modern day dets aren’t even real foods and have ingredients you can’t even pronounce…so you shouldn’t eat them!
    You can read my story, but just know I’ve been through all the meds, Uc Lifer and am Med free. Vit D is awesome, fish oil, probiotics(good quality)
    Oh and to add to Adam’s while looking at your poo and diet…keep a journal of Everything so you’ll know what works, what idoesn’t, etc.
    Well wishes, Shelly

  5. Katy January 18, 2015 at 7:51 pm #

    LiLia-

    Sorry I haven’t replied earlier. What I mean is I still eat a few things that aren’t on the diet…like corn chips. They are gluten free but not SCD. I went to an IBD Specialist last week and he said the only things that have been proven (guess through the studies he sees) to have any benefit is VSL#3 at very high doses and Turmeric. He suggested 1-2 tsps daily of Turmeric. He did some blood work on me and a test to see how well the Remicade is working for me or if I have built up antibodies. I have been on Remicade almost a year now. I am symptom free and last colonoscopy looked good except for some scarring.

  6. Katy January 18, 2015 at 7:53 pm #

    Oh the IBD Specialist suggested 2000 billion a day of VSL#3 which is a crazy amount to me and would be extremely expensive. I take a 50 Billion Critical Care by Renew Life and have been pleased with it.
    Shelly – I am going to read your story, sounds great!
    My dr is checking my b12, D and iron levels.

    • shelly in maine January 19, 2015 at 5:43 am #

      Hi Katy,
      The VSL 3 DS has a prescription…900 billion per sachet/packet that’s what I use 2-4 packets depending. There are other natural things. You can read about Glucosamine(I only use occasionally…read Bev’s info, olive oil…Graham, etc, etc. I actually have 2 stories, but you need to know that once you stop Remicade you can’t go back on it. Are you at the regular maintenance dose? Anyway, so much info…I’m generally 95-98% SCD now and make sure my cheats are pure and gluten free like oats.
      Best, Shelly

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