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Ulcerative Colitis
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Posted 11/14/2009 2:36 AM (GMT 0)
Hey all,

First of all, I'm on the SCD diet right now. Still feeling pretty sick, but maybe I should get rid of peanut butter and almond flour? Is there a specific forum somewhere for people using this diet??

Second, I'm losing it. I'm currently on 30mg of prednisone, 12 asacol a day, 4 VSL#3, hyomax for gas, and canasa once at night. I'm still having bleeding, urgency, diarrhea, gas, etc.

Whats worse is that canasa is costing me 700 a month and I just can not afford it. My insurance sucks.. UGH its miserable having a pre-exisiting condition and being self-eployed.

The prednisone has me all sorts of messed up. I have severe mood swings. And have this strange feeling of loneliness all the time. I also have no idea if it is even helping at all.

I had a colonoscopy on my birthday a week or so ago. I have SEVERE irritation in my rectum and the end of my colon in general. I have a few small dots in the right side of my colon as well.

I just don't know what to do anymore. Some days are a bit better than others. I'll have urgency and it ends up just being what I'd call a wet fart... Other days its like blood just rains out of there... I have barely had formed stool since the colonoscopy. And to be honest my butt hurts!

This is all severely affecting my relationships and my work. I can not stand this disease!

Help?! Advice?? Forums for SCD??

UGH

Jeff
Posted 11/14/2009 3:01 AM (GMT 0)
I can't comment on an SCD forum. Did a google search turn anything up?
Do you think it might help to switch from Canasa to a mesalamine enema? I use a generic one and it works well, I think. I hope you find something that works soon. Also, have you thought about moving on to a stronger med, or do you want to give the diet approach a try for a little longer?
Posted 11/14/2009 3:06 AM (GMT 0)
I did do a google search and found very little for specific SCD forums. I did find lots of recipes though..

I was using the mesalamine enema for about 2 months and my doc said canasa is better now for where my inflammation is located.

There are thoughts of going to something stronger, but at this point I honestly can not afford it anyway... Meds are costing me over 1200 a month right now...
Posted 11/14/2009 3:13 AM (GMT 0)
Do you have insurance? If not (well, even if you do, look at it anyway, as you might still qualify for some programs), check out the website below. It has links to all the patient assistance programs for meds used to treat UC. Maybe you'll qualify for something!

http://www.needymeds.org/resourcepages/crohns_colitis.shtml
Posted 11/14/2009 3:21 AM (GMT 0)
I'm self employed and was using an emergency catastrophic policy just before I was diagnosed with UC last year. Now no other company will have me, so I have no script coverage, and can not qualify for any either it seems.

Thanks for that link, it looks very helpful!
Posted 11/14/2009 4:31 AM (GMT 0)
Is there any way you can prove you're poverty level because that's the insurance I'm on? It's better than catastrophic. I don't have a job right now and I keep my bank account low. Something to look into. You might have to tweek you're current financial standings.

Diets are a hit and miss because everyone's UC or digestive problems in general are all unique. I know for a fact that my gut would freak out with the SCD diet and that's before I even try it. I bought the book and read it and it makes sense to an extent but I also think certain people can digest carbs just fine, like myself. It might be best to shift your diet again. Try an anti-inflammatory diet.

Sorry to hear you're frustrated. The disease sucks but you gotta be patient and keep finding ways to help yourself. Good luck....
Posted 11/14/2009 2:06 PM (GMT 0)

Jeff, how long have you been on the SCD?

While I can't comment on the validity of that particular diet, as I had never been on it, for me, diet was the ONLY thing that helped me get well again, after 8 years of UC. I followed a diet that eliminated most foods that the SCD does, but it targeted eliminating   for a time foods that feed fungus (all grains, sugars (including natural whole foods high in sugar and carbs), cheese, mushrooms, peanuts, etc.) I also took natural antifungals (olive leaf extract and caprylic acid) which I feel was equally important to my getting well again. I don't think one can rely on expecting a diet change only to help. I was much worse after I started the diet than before I started. I almost wanted to give up. But, I learned that was my body getting rid of the toxins that had built up, and I was experiencing a "die-off" condition.

Each person's degree of symptoms and progression of the disease varies so much, one cannot say for sure which approach will be better than another, or predict how long before one will see results. It may take months. I say hang in there, continue the diet. Maybe stop the almond flour and PB. I could not tolerate many almonds when I was on my diet, and even now, I have to limit them.

As well, for me canasa didn't work as well as Rowasa.

Some studies have implicated fungus in UC symptoms (was for me), so you may want to investigate that route. Two such studies:

http://www.ncbi.nlm.nih.gov/pubmed/17203803?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA&linkpos=4&log$=relatedarticles&logdbfrom=pubmed

and

http://www.ncbi.nlm.nih.gov/pubmed/19439813?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA&linkpos=2&log$=relatedarticles&logdbfrom=pubmed


Post Edited (kim123) : 11/14/2009 7:13:38 AM (GMT-7)

Posted 11/14/2009 3:28 PM (GMT 0)
I'd quit the Asacol and switch to a much cheaper Sulfasalazine and see what happens.
Posted 11/14/2009 5:48 PM (GMT 0)
Thanks for the studies kim. I will look into an antifungal. I have done the SCD two times now. The first time I did it loosely for about 2 months and I did notice that I got worse when I went off the diet. This time around I have been on it for 2 weeks and I really can't tell if I am any better now. Its very very frustrating. I want to take my girlfriend out to dinner but I just don't feel I can eat anywhere. :(

What is sulfasalazine? I have not heard of that one yet!

Thanks,
Posted 11/14/2009 6:45 PM (GMT 0)
I would order the canasa from Canada. It is called Salofalk there and it's much more reasonable. You can probably get a months supply for well under 100. I can't remember the exact cost but I order it all the time.

I also get my meds for free through Patient Assistance programs. I am not sure if you would be elligible considering you have insurance. You usually have to be able to prove low income to get in these program but if you are married and make no money, you probably qualify. 

Posted 11/14/2009 9:52 PM (GMT 0)
SCD can be great for some UC sufferers but you have to start slow because some people can find things like nut flour and fruits irritating. I personally also had some trouble with probiotics in large doses such as vsl3 and they would cause me loose motions at times. I think probiotics work great for some people but they can also irritate the gut. in some individuals. It's best to start slow also.
Posted 11/15/2009 3:28 AM (GMT 0)
You might like to pop over to the Crohn's forum and ask about SCD forums there. We do have a few people on the SCD, and yes, there are forums. I can't remember the names of them myself, but the SCD followers on the Crohn's forum should be able to help.

You might also try clicking on the "dietary therapy" link in my signature, as you might be able to get some guidance there.

All the best,

Ivy.
Posted 11/15/2009 4:10 PM (GMT 0)
Let me suggest a book for you. I saw a story on the 700 Club about a young man who had crohn's and has avoided meds by following this book. I purchased it and have found it to be very good and much easier to follow than the SCD although it is similar in a lot of ways. The book is call "The Maker's Diet" by Jordan Rubin who's story is in the book about his battle with Crohn's disease. Again, much easier to follow than the SCD and it makes a lot of sense to me.
Posted 11/16/2009 7:49 PM (GMT 0)
There are several allowable foods on the SCD that shouldn't be eaten or should be very limited early on when symptoms are bad. Almond flour is one of the things folks like to go crazy on, but can be irritating when you're still so inflamed. Some others are raw fruits and veggies, beans, nuts and dairy. Everyone has different experiences. Start keeping a food journal. Track what you eat and what your symptoms are for a day or two afterward. This will help you identify foods that may be problematic for you personally.

In addition, I didn't do well on Asacol and there have been others on this forum who've had the same problem. Sometimes it helps to tweak your meds. The older ASA drug, Sulfasalzine (Azulfadine) works much better for me.

I'd say for most folks who are sick enough to be diagnosed with IBD, diet ALONE may not be sufficient. For me, it was dietary changes along with probiotics to rebalance gut ecology and supplements to reduce inflammation and heal the gut that worked. Also, keep in mind that natural/alternative approaches are not quick fixes... these things take time. The body didn't become so ill overnight; healing won't come quickly either. Meds can help you get over the hump, though, while you're waiting for the natural approaches to kick in.

Here's a forum link: http://curezone.com/forums/f.asp?f=38

Posted 11/20/2009 6:47 AM (GMT 0)
An update-

I stopped eating nut butter and almond flour and I am feeling a TON better.

I am barely getting sick now. Blood is getting less every day. I'm still not 100% and I am not having very solid BMs, but I am really getting better.

The food sort of sucks, but its not so bad. Lots of scrambled eggs, lots of browned meat with allowable tomato sauce and cooked veggies.

I need some good ideas for allowable food! :)

Thanks everyone.
Posted 11/20/2009 7:17 PM (GMT 0)
Paul Nison and David Klien say that nuts should be avoided when healing. today i feel amazing. i take one day at a time though
Posted 11/20/2009 7:23 PM (GMT 0)
Here are some of the foods I considered my always safe, fall back foods: very ripe bananas, canned peaches and pears, baked apples and pears, various organic flavored applesauces in the little snack packs, tender white meat of chicken and turkey, mild white fish, scrambled eggs and omelettes, organic chicken and turkey franks. Well cooked green beans, English peas, carrots, baked winter squashes with butter and cinnamon, peeled and steamed zuchinni and crookneck squash. Loved to make homemade beef and veggie stews in the crockpot. Another meal favorite was slicing up franks and peeled zuchinni and browning in a skillet with olive oil.

Glad to hear you're feeling better. Always trust your gut and keep a food journal. What works for other people may be problematic for you. I never was able to tolerate the SCD yogurt or DCCC, although others swear by it.

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