SCD--losing weight, questions.

Hello, I'm also on another forum about SCD, but would like to get some feedback here as well.

I've been on SCD now for 11 weeks, I have UC, and when I had my last colonscopy in August, the doctor started suggesting surgery/remicade. I've been balking and insisting on trying dietary changes first. He gave me a name of another GI doctor, so that I could get a second opinion. I went to see this doctor last week. This doctor was somewhat helpful, but as with my other GI doctor, he's not into dietary changes/doesn't think it helps etc. (this new doctor is a University doctor and at least seems a little more knowledgeable/scientific on medicines etc). I haven't decided yet whether or not to start seeing this new doctor, he's not in network for my insurance, so it'll be expensive to see him if I go that route. (on a side note, as I tried to explain SCD and the doctor insisted grains were okay/important, and saw the look on my face, he said "you're really sold on this, aren't you?")


Some things this new doctor suggested/advised. He didn't seem to think that surgery/remicade was quite as imminent as my current doctor thinks. (granted there was a glitch and my file was never faxed over or arrived to this new doc) He suggested trying a couple of different meds. (currently I'm on prednisone and imuran...I was on Asacol/Apriso, and just stopped it recently) He, along with my current doctor, wants to try to get me off the prednisone, which is fine, except whenever I get off, I flare/get sick. He suggested a different steroid Uceris and trying Lialda (similar to asacol) he also mentioned sucfasalazine. He also brought up the idea of doing some clinical trials (which would be free) and gave me a name/number to call, the drugs sound similar to remicade, but I haven't looked into it much to see what they are. (Golimumas and Etrolizuma G, something like that, anyone heard of them?) Basically, I think the suggestion came down to trying some of these other drugs first, if they don't help, then maybe try the clinical trials. (I did end up calling, and wasn't too impressed with what I learned)

Anyway, I'd like to hear some feedback from anyone who has/is using any of these drugs etc. I'm feeling rather discouraged/frustrated/confused on what I should do next. I'm still not gaining any weight, someone was actually concerned recently that I'm anorexic. I keep worrying that I'm slowly killing myself/being unwise by the fact that I'm not gaining weight. I still have diarrhea and bleeding after 11 weeks on this diet, and although I generally feel "okay" I'm starting to wonder if I will ever be "normal" again. I hate to stop SCD, and I really want it to work, but part of me wonders if I should consider taking a break from it just to get my weight up again, but then I think, will that really help? I wasn't really "gaining" my weight back when I was not on SCD, but neither was I losing.
I've been trying to follow the stages from pecanbread, but I wonder if I should just ditch this idea and start eating things that are SCD legal, because, at least I'd have more variety/food to eat. It doesn't really seem to matter what I eat/don't eat, because I'm always having D and B. I'm also a bit concerned with heading into flu/stomach virus season, that if I get sick, I'll land in the hospital, or quite frankly, if with the amount of weight I've lost, if it'll kill me.

I'm about 5.5 and have dropped to close to 96/97 pounds.

Did anyone else have D & B for weeks/months after starting SCD? We're not supposed to do nuts/seeds/berries until symptom free for 3 months, but what if you are never symptom free?

On the positive side, I had a lot of blood taken/tested in September, and as of then, all my vitamin levels, etc. we're good/normal. So I do feel confident in the fact that even though I'm thin, and least I seem to be nutritionally doing okay. This has been without taking a multivitamin too. Which brings me to another question. I just ordered some Freeda multivitamins from D. Wellness. Their site/package says to take 3 pills a day, when I looked at them on Lucy's kitchen shop, it said to take 1 a day. Is anyone taking these? How many do you take a day? Why is there a discrepancy?


I was not really wanting to try s boulardii, but I'm starting to wonder if I should, and just placed an order for it today.

Has anyone started SCD, stopped to get their weight back up, then started again? I just feel confused on what the best thing to do is at this point. I know I don't want surgery, and really don't want Remicade, but will I guess, try that before surgery if I have to. I just don't know if I should try these other drugs and keep with the diet, or stop the diet and try the drugs...

Any thoughts/input is much appreciated!

Amanda

Hi changingdiet2013.

I'll offer some suggestions based on my own personal experience and failures with diet changes.

1) Please fix your metabolism and get to a stable state before trying any diet. If you are fatigued and still bleeding, eat anything that your colon can can tolerate. If you are in a catabolic state, your body will devour anything, including refined sugars and grains.

2) Are you making bone broths for the gut? This is the staple of any diet, gaps, scd or paleo.

3) The SCD diet puts emphasis on fruits in the beginning - this is incorrect according to me since 40% of the population has issues with fructose. Try eliminating fruits and honey and see if that helps your bleeding in the initial stages.

If you weren't gaining weight before SCD then SCD is not the reason for your weight loss (from what you said).
You gut is not working well enough to use the food you are eating.

I had trouble getting better on SCD and I was very strict, but had just a little weight loss not anything like you.
If you haven't seen improvement in 11 weeks it's time to try something else. I failed with several diet mods before finding the one my gut liked and as StealthG said fruit, legal on SCD, was a big problem for me.

Have you tried keeping a food journal and seeing if any particular food is OK with your gut? When I was flaring it was hard to tell what was a bad/good but it's still good to try.

My go-to foods when gut is bad=chicken broth, protein/meat, well cooked carrots, cooked spinach and good oils (olive, coconut) by the spoonful or hidden in food. I also love butter on anything. The oils are good calories and help your body in many ways.

Nut butters can be OK but my gut dislikes heavy fiber so I never ate a huge amount of them, maybe you can. Good calories and good protein.

Have you used mesalamine enemas to stop the bleeding? I highly recommend these, speaking as a person who never got any success from oral meds. These actually work.

Don't expect doctors to support diet modification unless you are lucky enough to have StealthG's doctor who literally wrote a book about it.

S. Boulardii is very useful for preventing C. Diff and other bacterial infections. I think you should give it a try.

changingdiet...
Good that you are focused on diet.
SCD diet greatly helped my daughter with her symptoms, BUT fecal transplant is the one that brings her back to normal.
You are not gaining weight because your colon is still inflamed. Try soft pureed foods along with lots of broth.
Homemade chicken broth is very effective in calming inflammation. Its a long tedious job, but the effect is very impressive.
Ask a friend or family member to make it for you if you are exhausted and tired.
Here is how i make it...My daughter still takes 1 cup every morning instead of coffee.

Boil 1 largest soup pot with water to 3/4th of it..
Remove the skin of one whole chicken and wash/clean it.
Dry it with tissue and smash up nicely all the bones(this is very important) and flesh with the back of knife.
Squeeze some fresh lime and add salt to it
Add this to boiled water and let it boil for 2 hrs.
Meanwhile clean and chop 2 bunches of celery hearts and 6 or 8 carrots, 2 big red onion.
After 2 hrs add these vegetables to it and let it boil for another hour(by this time the amount will be reduced)
Last stage , add smashed fresh garlic(1 bulb) and ginger- smashed (2 medium sized roots).
Boil for another 1 hr or so until you can see the fatty layer on top.
Turn it off and let it cool down nicely.(I let it cool through out night)

Once cooled strain the entire soup and strongly squeeze out all the juice from the vegetables and flesh( little time consuming but worth it)
You will get 2 large plastic containers full of chicken broth.
I refrigerate it and this lasts for 3 weeks minimum.

Thanks for the replies/suggestions.

Amanda

Thanks, yeah really, prednisone never really gave me any of the traditional side effects...very weird. I'm convinced I get them more as I get lower on the drug...at least I feel more irritable when the dose gets low. I have a friend who is a nutritional consultant/certified etc, she lives about an hour away, I may go stay with her and her family for a month, and see if she can help get me on track.

I thought SCD might work, I felt like I initially had some improvement, but not sure if I really am, with symptoms still around and losing weight. Will keep it up for a bit longer/talk to my friend, and then go from there.

Thanks again!

Amanda