HELP! :( Recommendations for this flare + SCD people I need you!

Hello all --

This is long but I just want people to know what I've tried already. Sorry for the novel, there's a "too long; didn't read" at the bottom if you want to just get to the point.

I was on 4800mg of Asacol daily since my diagnosis in May 2013. I was originally on Imuran (100mg) as well but when it started working in my system it also made me vomit constantly every day so I had to stop it. I flared again after I stopped the Imuran (Feb 2014) and I began Humira (every 2 week injection) in the middle of July 2014. It took a while to work, but at the end of August I finally noticed it - which was wonderful because I had to go away for school in September.

While at school I had 5 incredible weeks - no symptoms, Humira worked great (I had gone up to the same school in Fall 2013 but had to drop out after a Dr prescribed me cipro for a UTI and it gave me C. Diff which kept me out of school & in the hospital for too long to catch up).

I went home for Thanksgiving in October (Canadian lol), all was great, had some symptoms the day before I left but I attributed that to eating two Thanksgiving meals in a row (I tried to be careful but you know the temptation when you're feeling fantastic). The morning I went to leave for my flight back to school I ended up with a kidney stone attack (my third in a year - I believe from dehydration. They're very small and don't last more than about 2 hours but if you've had one you know how killer they are). It almost seems like this kickstarted my current monster flare. I went back to school and couldn't make it to a single class and chose to leave again and come home (I was in the nursing program and if anyone if you have done that you'll know how grueling it is and you can't miss anything, plus I had practicum. Also if my immune system is down, spending time around sick people in hospitals isn't such a good idea).

Now I have been flaring off and on constantly since diagnosis - this five weeks I had was the longest I'd been "in remission" for. So I decided to take out my only constant factor as a test - the ASACOL. By the next day I saw a relief in symptoms (no bleeding, not as much urgency, etc). I was so excited! My specialist wasn't too happy but he said if that's what worked then he couldn't argue and he booked me for a colonoscopy a week later to see my inflammation.

Colonoscopy showed quite a bit of active inflammation but I tried seeing the glass half full and wanted to believe that maybe my inflammation had been worse before, and stopping the Asacol was healing my gut and it was just a process. My specialist said it was possible and agreed that I should stop the Asacol either way (seeing as I had kept flaring anyways, it obviously wasn't helping much).

Since the scope I have been flaring nearly worse than I was when I was first diagnosed. My specialist put me on a double dose of Humira (so now I take it every week), but it has been 8 weeks and NO alleviation of symptoms. I had to receive a blood transfusion (2 units) two weeks ago (was dizzy, cold, heart murmur, weak, etc). One of my major symptoms has always been nausea and vomitting and that got so bad that even Ondansetron/Zofran didn't work. I actually have been using THC - controversial I know, but heck I could get way higher off the pain medication I receive - as a method and it is the ONLY thing that works (please note that I'm not recommending cannabis I don't think I'm allowed on here?) My nausea and vomitting has been so bad that I can't even keep down sips of water most days, let alone any food if I even wanted to - luckily my Dr was completely OK with it and actually prescribed me lab-made and government patented THC "capsules" (Nabilone). He also prescribed me 50mg of prednisone for 5 days and told me to stop no matter what (because my mom had come with me and begged him for a C. Diff test out of desperation) and to come back and see him after.

Well the prednisone worked AMAZING. I hate it though because in the last 20 months I've been on it probably 10 months off and on so I really didn't want to continue it any longer (so the 5 days was a fair deal to me). So my mom suggested we try the Specific Carbohydrate Diet because we've exhausted so many options, but never tried a massive elimination diet like that (I once eliminated gluten, dairy, eggs, and citrus by suggestion of my naturopath - who I no longer see lol no results - but noticed nothing except a bit of stomach pain from dairy, which I normally avoid except for cheese anyways).



TL;DR: Been flaring for freaking ever, finally trying SCDiet.



I'm currently on Day 4: we have done everything proper - made our own yogurt, organic free-range eggs, bought grass-fed chicken and beef, homemade soup stalk, and 100% Welch's grape juice (watered down) - I hate jello so I nixed the gelatin. Now I waited until today to eat the yogurt because we were borrowing a dehydrator from someone to make it. I also added HALF a banana into my diet.

Well holy smokes. All I ingested today was half a banana and about 2 small bites of yogurt (the yogurt immediately made my stomach gurgle) and my symptoms are back full swing. I've ran to the bathroom about 5 times so far, with bleeding and all (which had stopped with the prednisone). Thrown up twice. Mild abdominal pain/discomfort. I weighed myself 5 minutes ago and i am 96 pounds.

My question to those who have done it: should I stop? Am I in too bad of condition to do this, with my weight being so low? 96 pounds sounds super low but my normal is about 105 and I've been sitting at 100lbs during this flare (I was 85lbs last year when I was diagnosed). So really it's not THAT bad I haven't lost 20 pounds or anything. I keep reading this diet causes a lot of weight loss (most people listed that as a pro) and there were actually quite a few who said they actually needed carbs to stop themselves from flaring. Do I contribute this to die-off or that my body hates bananas and dairy, and the bleeding just to me being no longer on prednisone and I just need to give it time? I don't have too many cravings for things because I've felt so nauseous today so I'm not looking for an out (although some chicken soup and soda crackers would be nice ) I would actually like to continue the diet to see how it goes but I don't want to be stupid about it either.

I see my GP tomorrow. I'm asking anyone here for help with the diet thing because as awesome as my GP is, he continually rolls his eyes at diets. He actually tells me to go to McDonalds to build my weight up (uh - that can make healthy people feel sick, let alone someone midst a flare haha).

THANK YOU any and all who can contribute. My e-mail is on my profile too if anyone cares to answer that way.

I tried SCD several times over the years and saw some positive results but not enough.
In the end, after trying many name IBD diets, it came down to testing each food to find a food plan that didn't make symptoms worse.

My current diet which makes my gut happy is eating meat and low-fiber veggies. Fiber, especially insoluble fiber, is a big no-no for my gut. I am also gluten-free and almost grain-free. After doing this long process it became clear that IBS was also part of my gut's problem and many foods/spices have to be avoided too: tomato-based anything, seafood, chocolate, lemon and citric acid, fruit juices and most fruit. Now that my gut is almost healed dairy is OK in small amounts but not yogurt (I was a boss at making SCD yogurt and loved it). In bad old days dairy caused gas and urgency. SCD says banana are OK but my gut did not agree.

What I suggest is keeping a journal of food intake but do not examine it daily, look back over the week and see if there's a pattern. Make homemade chicken and bone broth with soft veggies. Eat protein and see which veggies you can tolerate. Add good oil wherever possible for calories (plus olive and coconut oil are anti-inflammatory). Look up "resistant starch" threads and eat potatoes as french fries and potato salad, both high in RS.

This is not an overnight miracle but after 30 days if you see improvement you'll want to continue.

Also use mesalamine enemas for healing, helped me greatly with bleeding in combination with diet modification.

Final note: my gut also dislikes most supplements including psyllium in any form. Many here LOVE psyllium and get benefits from it, we are all different.

Post Edited (imagardener2) : 1/9/2015 8:31:43 AM (GMT-7)

"Several of us, including me, fare better eating McDonalds than by eating "healthy" food "

and yet according to you, you have never not been in a flare since dx - have you ever tried NOT eating macgaggles ?

Thank you all for your input! Although some of the suggestions I've already been doing (bone broth, no grains, etc).

I think what I've discovered from reading a lot of reviews is that even the people that say SCD is their saviour, haven't REALLY stuck to the complete diet - they've altered it, or didn't ever eliminate ALL grains, or skipped the intro diet, etc etc. In which case it's not really SCD, it's just another elimination diet done differently lol so the science behind it doesn't really make sense to me because no one is really sticking to what they are telling you to do.

I think I'm going to the hospital tomorrow (I need to give it one more day). I'm running to the bathroom now eliminating only blood. I drank a bit of bone broth and it made me feel even more sick. I'm going to see my GP later today but all he will do is prescribe me more prednisone I'm sure - which I have tried and tried and tried. And yes, it works but only in the moment for me. I think it's time I begin looking at Remicade as another option. Obviously doubling Humira is doing nothing :(

Thank you all!

I think Gary has a point about McDonalds.

Generally speaking, a vast majority of Americans have gut flora profiles adapted to the SAD (standard american diet), so it makes sense that some UCers do better on McDonalds and other processed foods. During flares, I think it is important to get nutrition through any means possible, including fast food if one can tolerate it.

Are these foods preferable? Absolutely not since we know there is a link between the western diet and colon cancer, but it might be of benefit in the short term to give the body calories.

Changing our innate gut flora profile involves an immense amount of work. It may take time, but with the help of probiotics, FMT and other tools, I think it is possible to eat a variety of foods without issue.

My suggestion for you would be to ditch the SCD and look into eating clean. The SCD was a starvation diet for me, but it has sound principles. Gluten free might be of benefit to you since most modern wheat is problematic and laced with glyphosate. Other healing foods include kefir, bone broth, egg yolks, potatoes and rice.

I also recommend adding in safe starches like rice, potatoes, beans, plantains, etc so you feel full and do not lose anymore weight. It's turning out that the resistant starches in these above foods are important for gut health.

Also, listen to your body because that is the most important thing when it comes to foods. What works for others may not work for you.

Good luck.

"I can only assume that you used this screen name because you thought I had your other screen name on ignore. "


LOL !

yes gar, you are absolutely right - i am consumed with everything having to do with you - my whole life is centered around you and your needs - every thought and action i take are driven by thoughts of you -


"I believe it is against forum rules to use two different screen names."

and what you believe is :

a. wrong
b. none of my concern


LOL !


sorry OP - i'm done - didn't mean to hijack your thread -

Just to update: I think I'm going to heading to the hospital tomorrow. I'm going to talk to my GP, but I think it might be best. I was up all night and can't stop bleeding - I know people say it's not as much as it looks, but I got the blood transfusion 2 weeks ago and I've been bleeding the same since (except for the 5 days I took pred) and last night it completely escalated to the point where I'm just running to the bathroom with only blood. Might be time to talk about Remi.

www.gastroendonews.com//ViewArticle.aspx?ses=ogst&d=In+the+News&d_id=187&i=January+2014&i_id=1026&a_id=24751

Article short version=people on SCD had much more diversity of gut bacteria than non-SCD guts.

It was a small study of 40 IBD patients, half in each group have Crohns and half have UC and these people followed SCD, the control group of 20 (half UC/Half Crohns) did not follow SCD diet.

The study did not measure clinical disease activity, only gut microbe variety.

Let's not forget though that many have tried all kinds of diets such as SCD with no success. It's one option out of many. Just as certain meds work in some and not others, so goes diets.