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Ulcerative Colitis
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Posted 7/16/2011 10:09 PM (GMT 0)
Hi guys i know you guys know im trying to beat this with out meds but i have a question about meds?? I read that the doctors treat crohns diffently to UC and they use hurmia for crohn's. As i have never taken hurmia or remicade i was wondering why i see so many posts with UCer's using hurmia when i tought it was supose to be for crohns. Again its just one of these things if have read.

Also i have disappointing news i saw some mucus today and am now I'm worried that the stuff I've done is going to fail. I havent had any bleeding or any other syptoms that i used to get. I  still  have 1 bm a day or 2 but i am wondering if it is going to come back.

I am a bit tired of this diet as well. and if the UC comes back everytime i increase different foods what does that mean for me??

Posted 7/17/2011 12:01 AM (GMT 0)
Hm, well I originally diagnosed with Crohn's, but that changed to UC last year. I was being treated with Humira at the time that I was rediagnosed, and while I think the Humira helped some, it definitely stopped at a certain point. My GI didn't give a reason but he did say it's more effective for Crohn's patients and so its inefficacy made sense with my rediagnosis. But I am not sure of the specifics...hopefully someone else will know.
Posted 7/17/2011 12:48 PM (GMT 0)
not really sure ive seen people with colitis treated with it as well as crohns thats why im asking. i personally am trying to stay away from it. if i have to use the meds again i would use mesalizie and try to stay away from the higher meds but i was just wondering?
Posted 7/17/2011 1:23 PM (GMT 0)
Hellokitty,

If you don't want to take the high side effects biologics, which I totally understand as I do not and did not want to take them, you could  try LDN - low dose naltrexone. I would be glad to post some info for you. But here's research that was done on it:


Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

Posted 7/17/2011 4:33 PM (GMT 0)
ok thanks. I think that my mucus problem was caused by me eating fried food i dont do it that often but i ate chicken which i fried in almonds. I think it was too much for me and it made some mucus come back. I didnt see any today and i didnt have the fried almond chicken last night. i grilled it instead. my diet is so limited and has been for so long. no carbs at all except 1 apple and i know nuts do have some carbs in them so maybe i ate too much.


thanks for the report ont the LDN that was interesting. i would have to ask the doctors in the UK if the use it, i have heard that LDN works so if it comes back i will defintally look into it especially if i get bleeding. That scares me the most.
Posted 7/17/2011 5:59 PM (GMT 0)
Hellokitty,

Just so you know, there are LDN prescribing doctors in UK.

Glad you're doing better.

Posted 7/17/2011 6:58 PM (GMT 0)
I am a bit tired of this diet as well. and if the UC comes back everytime i increase different foods what does that mean for me??

Oh yes I understand about diet. It's been 18 months for me and while I am soooooo much better in daily functions it is so difficult not being able to eat foods I love: ice cream, cheesecake, chocolate, coffee, tea with caffeine, a candy bar, cherry pie, oh the list could go on because I love my desserts.

I had the worst morning/day in 12 months just last week. Constant BM's (no D though which was a miracle) which happened the morning after a shrimp scampi dinner the night before. I thought I had gotten past being sensitive to lemon...not. Garlic is also a problem which I thought was not a problem. Yes it is tough to stay on diet when I thought by now I would be able to branch out a little.

That's why I've started planning on FT (fecal transplant) this fall. In the meantime I'm going to try adding some other treatments to see if they help. I've started psyllium seed but got the wrong thing the first time so am waiting for the powder to arrive.

And next will try the nicotine patch. And maybe LDN but that will take more work to track down a prescribing doctor since my GI was not gung-ho on it.

My doctor thinks there's a possibility that these are IBS symptoms rather than UC. I think "What fresh hell is this?" Does it matter what the name is? Not to my colon.

Why is it that we are so attracted to foods that cause us problems? In the case of chocolate and coffee I know it's my brain that craves it even though it will hurt my colon. Feels like Dr. Jekyll and Mr. Hyde having a fight.
Posted 7/17/2011 8:22 PM (GMT 0)
I've started psyllium seed but got the wrong thing the first time so am waiting for the powder to arrive

Actually I found whole psyllium seed to be just as effective as the powder. I switched permanently to the powder because one batch of whole seed seemed to have some grit in it and I was afraid of chipping a tooth.
Posted 7/17/2011 8:32 PM (GMT 0)
Actually I found whole psyllium seed to be just as effective as the powder.

Lol. Guess I should have asked you about it. I got the seed because I have a coffee grinder and assumed it would be easy to grind it. Not. Those seeds are as hard as wheat seeds, just a few became powdered. I did mix up 10% semi-powdered seed and took it anyway.

Then I thought aha, I'll soak the seeds and maybe soften them up and then put it in the blender. 2 days of soaking and they still don't get broken up with blender-ing. They do form a gel however after soaking. I have been continuing to take the psyllium seed but ordered the powder because I think it has been somewhat beneficial and definitely not harmful.
Have cut back on the Citrucel amount also.

I feel like a mad scientist with my seeds and such. :-) Will report back.
Posted 7/17/2011 10:53 PM (GMT 0)
That's why I've started planning on FT (fecal transplant) this fall. In the meantime I'm going to try adding some other treatments to see if they help. I've started psyllium seed but got the wrong thing the first time so am waiting for the powder to arrive.


I think the fecal transplant is a good idea i would be interested in hearing how that goes for you. I do use psyllium husk i take it in capsules mixed with other stuff. Its from the program i am doing. To tell you truth when i was taking it in the pill it seemed to work really well.but  then i started using  a powder  (which is from the program)  and i struggled with it, again i had the mucus. The guy im using took me off the powerder as he thinks i am having trouble with digesting fiber. He will be using enzymes now on me. Which i think i need. I think my body lacks enzymes.

i feel though i should be allowed to get away with something more as i have been so strict for a year and a half. and before this diet i was sticking to raw (with some errors i must admit as i found it difficult)

all i eat is meat, eggs, geen veg, salad; and nuts and i do use alot of red peppers and onion. that is pretty much it. I did add some lime to my chicken which i have not had for the year and half. i have used lemmon and it was fine for me but everyone is different. i dont eat any carbs except 1 apple a day. Well i know nuts have some carbs in them. I havent had any breads rice,, pastas; potaotes, honeys; surgars; even sweet potatoes i havent had. . People at work are really surprised about the way i eat and how strict i am. I've pretty much had to tell everyone at work what is wrong with me as they always ask about the way i eat. so i just tell them now i dont really care if they know or not.

I think that if i could have any food i would have to make my own pizza again. with goats cheese. i used to love that. oh well..

Thanks for your replies it always helps me:) and thanks imagardener2 i feel that we are doing simular things it helps me not feel alone, thanks for your replie it really helps to have someone on the board who is doing the SCD diet :) .


any way

Posted 7/17/2011 11:15 PM (GMT 0)
imagardener2,

while I am soooooo much better in daily functions it is so difficult not being able to eat foods I love: ice cream, cheesecake, chocolate, coffee, tea with caffeine, a candy bar, cherry pie, oh the list could go on because I love my desserts.

Ditto to that! I miss ice cream, chocolate, chocolate ganache cake, really good bread... OMG - I'm salivating already just by listing these foods, haha... pavlov's dogs... not too far off, haha

Will your insurance cover the FT? I'm sure mine will not. Have you gotten a guestimate as to how much the whole thing will cost, just curious? It definitely seems like the way to go.

 In the case of chocolate and coffee I know it's my brain that craves it even though it will hurt my colon.

I don't know about coffee, as it makes me nauseous. But I think I read somewhere that the reason people crave chocolate is due to it containing lecithin, which the brain requires for functioning?

Posted 7/17/2011 11:18 PM (GMT 0)
Hellokitty,

Sounds like you are working with a pretty good holistic practionner. I gather he is not your GI? Sounds like his protocol for you is working.

all i eat is meat, eggs, geen veg, salad; and nuts

That sounds like my diet too, except I only eat egg yolks - no egg whites (can't tolerate them), and some fish too.

Posted 7/18/2011 3:17 PM (GMT 0)
That is interesting that you cant tolerate the whites Insofla i wonder why not. No the guy im using is not a GI. The GIs are not really helping. I just kept getting worse with them. I remember when i was first dignosed and they gave me the asacol and pentasa saying that usually the first flare is the worst. I remember thinking well that is not so bad i was only having some bleeding and mucus at the time. They really lied; that first flare was not the worst at all. Once this illness spreads it gets really bad. My flare in 2009 opened my eyes to what IBD means. Ive been doing natual stuff ever sincne that. IBD is scary. To be honest mentaly even though ive really improved my situation, I feel that i can not say ive got a permant illness. i cant say this is chronic. I have not accepted at all i have IBD. Thats why i keep doing things to get rid of it. i just can not accept that i have this. I dont know if that is weird or not? But after 2009 i will do anything to get rid of this. this is not a cool illness it really is not. I wont give up.
Posted 7/18/2011 3:36 PM (GMT 0)
Will your insurance cover the FT? I'm sure mine will not. Have you gotten a guestimate as to how much the whole thing will cost, just curious? It definitely seems like the way to go.

I seriously doubt it will cover FT but it will cover the c-scope (less deductible) because I am due for one. sas said that FT was $1000 over c-scope coverage but the GI has not returned my call yet. Perhaps cost will go up to cover legal expenses I dunno. Hope it's averaged out over several years worth of patients.

Since I am currently paying for all meds up to my $6100 deductible there is no difference to me between med cost and FT. I don't believe meds are doing anything and am willing to take the chance on FT for a better future.
I will also have travel and hotel costs because my local GI although willing to try it is not able because the facilities won't allow it.

I'm nowhere near meeting my deductible so all of the expense will be paid by me. Maybe I should try home FT first and see if it does the trick.
Posted 7/18/2011 5:59 PM (GMT 0)
up to you imagardener; i honestly have gambled money on alternative approaches. Its up to you what you think is the best way.
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