Recently Diagnosed for Severe Pancolitis ( UC) - Please share !!

I am an Indian decent living in San Francisco, wondering also is there any Indian dishes I can eat that is SCD friendly.

On - May 31st, 2013, after suffering for 3months and being on 8-diiferent anti-biotic trial and error by doctors finally through colonscopy I was diagnosed with severe Pancolitis (UC). ost cuI am on High doses medication, seems like bleeding is stop and diarrhea is now almost to 10-12x vs 30+ a day. well, I also did a lot of research and following the SCD diet based on “Breaking the Vicious Cycle by Elaine Gottschall” I had to accept the fact it’s hard to follow but we need to do what we need in order to recover from this unwanted disease, also I start to learn how to cook and make my own yogurt using Yogourmet maker.

I wish each and everyone for faster recovery and thanking you in advance for sharing your experience to educating me more on this disease, well reality is that UC isn’t what my life is about. now, It’s just part of it(-: now I just have to get better and move on with life.

Iqbal – San Francisco.
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Medications:
Prednisone 60mg (tapering now on 30mg)
Asacol 800HD 2tab 3x a day
Canasa (bed time)
Omeperazol 40mg 2x a day
Lopermide 5mg (2-3 tab 3x a day or as needed
VSL#3 DS-(20 Pack) – Prescription Only
Non-dairy Saccharromyces Bolardii+Mos probiotic,
Theralac (bio-Replenshing probiotic),
Vitamin D,
Omega 3 fish oil, and
B12.

I would recommend focusing your energy on getting better, and a lot less on what you are eating. As diet modifications are not a cure all for everyone with uc, as for a lot of people (like myself) diet modification did absolutely nothing at all for the state of my uc and the symptoms of it. Given I am talking diet mods when my uc was not currently flaring.

That said, when you are flaring generally avoid things that are spicy, have lots of fiber, and drinks that are alcoholic or caffeinated. Once you are done flaring then you can resume eating those foods without issue. Right now bland foods are your friend.

Thank you Tornado6, iPoop and imagardener2 for your valuable feedback, well I am loosing weight, and always feeling so dizzy with no energy, too afraid go out due to the diarrhea and sitting and laying down at home giving me frustration and anxiety attack with sleep deprivation. Talk to doctor a few minutes ago and he is going to prescribed another medicine "lorazepam" to help me sleep. I am getting medicine cloud in my stomach. not sure what to do and what not do - getting so confused yet determined to get better with no hope.

I admire you all for your bravery for handling this disease and I am yet to learn how to cope with this.

Hi recently diagnosed with PC.
I've had UC for over 25 years and kept it under control all that time by watching carefully what I ate.Around Christmas 2012 we had a lot of visitors and Ilet my guard down completely followed holiday for a month where I continued to eat food Which I knew I shouldn't .Result is I ended up very sick and mucous and blood upto 20x daily.Colonoscopy revealed pancolitis .started on Prednisolone 50mgs am now down to 1mgm I have formed stools no blood feeling great but I have been following the PALEO DIET very strictly for a month and I know for sure, without any doubt, that the PALEO DIET has made all the difference .Its given me back so much energy and optimism, no urgency or discomfort at all.It takes a lot of time cooking lots of meat and veges, but big pots of chicken and vege soup or a leg of roast lamb can keep you going especially if you plan ahead and freeze meals.
Keep doing your research..best wishes

Iqbal N said...
I am an Indian decent living in San Francisco, wondering also is there any Indian dishes I can eat that is SCD friendly.

On - May 31st, 2013, after suffering for 3months and being on 8-diiferent anti-biotic trial and error by doctors finally through colonscopy I was diagnosed with severe Pancolitis (UC). ost cuI am on High doses medication, seems like bleeding is stop and diarrhea is now almost to 10-12x vs 30+ a day. well, I also did a lot of research and following the SCD diet based on “Breaking the Vicious Cycle by Elaine Gottschall” I had to accept the fact it’s hard to follow but we need to do what we need in order to recover from this unwanted disease, also I start to learn how to cook and make my own yogurt using Yogourmet maker.

I wish each and everyone for faster recovery and thanking you in advance for sharing your experience to educating me more on this disease, well reality is that UC isn’t what my life is about. now, It’s just part of it(-: now I just have to get better and move on with life.

Iqbal – San Francisco.
--------------------------------------------------------------------------------------------
Medications:
Prednisone 60mg (tapering now on 30mg)
Asacol 800HD 2tab 3x a day
Canasa (bed time)
Omeperazol 40mg 2x a day
Lopermide 5mg (2-3 tab 3x a day or as needed
VSL#3 DS-(20 Pack) – Prescription Only
Non-dairy Saccharromyces Bolardii+Mos probiotic,
Theralac (bio-Replenshing probiotic),
Vitamin D,
Omega 3 fish oil, and
B12.

I have severe pan colitis. I was in the ER a few weeks ago and the CATSCAN was so bad they took my drivers license threatened to catherize me if I did not pee and were not happy when I said I was still leaving and not being admitted to a bed.

I got some prednisone and vicadin's and went back to work and back on the RS diet, bleeding stopped in days and I got a tornado of stuff done at work and at our new home. It is now time to taper down so I dropped last week from 60 to 25 and will clean up the 'comfort' foods and begin getting ready for prednisone zero.

With all I learned from 3 flares over the last 12 months after a 2 year remission I expect another 2 year remission is in the bag but targeting a 5-year remission.

I agree 110% with Ipoop. When flaring less is more. Keep it simple, bland low fat and low fiber. Do not eat foods that pass whole or insolubles like nuts seeds or corn..Stay away from raw veggies eat rather cooked carrots and mashed potatoes.

If your thinking about SCD maybe it is not a good time to do it.

But are you flaring aguywithuc and eating RS? I am suggesting what he should do when flaring. I tried beans and it is a no go for me when flaring. Thats me anyways. When I was not flaring I was fine with RS but in moderation. I guess he can only try and if the foods in RS dont bother him sure go for it. I agree the research is behind it and plan on eating more of it when better. But for now I simply tried and cant.

Post Edited (twiggs) : 6/26/2013 12:24:59 PM (GMT-6)

twiggs said...
But are you flaring aguywithuc and eating RS? I am suggesting what he should do when flaring. I tried beans and it is a no go for me when flaring. Thats me anyways. When I was not flaring I was fine with RS but in moderation. I guess he can only try and if the foods in RS dont bother him sure go for it. I agree the research is behind it and plan on eating more of it when better. But for now I simply tried and cant.

"But are you flaring aguywithuc and eating RS?"

If your asking if I flared while on RS absolutely not.

1. Exited RS diet after fastest pred taper ever
A. Exited due to conversation with GP after firing GI, was trying diet to eliminate anemia
B. I made bad decisions this should have Merged both RS and anti-anemia diet
C. Ate regular ice cream on daily bike rides with daughter
D. Went on vacation and was bent over digging rock/dirt to install 5 Topiary evergreens into box on slope
E. Inflammation increased from physical compression while bent over digging

2. Realized how stupid exiting RS is when bloody transit time was 6 hours - no time left for RS to ferment into SCFA butyrate

3. Needed power tools to correct my bad decisions
4. Hospital ER allows scheduling from home and waiting there, arrived for ER appointment got CATSCAN
5. Lots of hassles leaving, but did leave with pred and vicadin and needed GP to get full taper amount
6. Not going back to GI who is sending me letters now about the ER trip
7. Power tools to slow GI transit time and put RS back to work
A NOW - Librax, Mebeverine, Prednisone
B Was also applying pepto bismal, immodium, hycyamine
8. Within a week bleeding stopped and transit time was normal so jumped back on RS diet
9. No longer passing beans they were working their magic
10. Lifting weights, putting on muscle and mountain biking daily and tennis with daughter daily
11. Put in massive effort at work 3 all nighters got pay raise and huge projects done for summer
12. Work life slowing, home is totally transformed in terms of landscape, 3-car garage oraganization, trees planted and inside its seems even bigger due to more mad mad mad prednisone organizing and transforming.

Steak and Navy beans
Eggs and Navy beans
The chili is a constant staple.

Wheatgrass resolves anemia quickly and the grass fed beef, organic bonless chicken thigs and steak totally eliminate anemia.

Will eat Navy beans .89 cents a can until the day I die. With butter tastes great, in chili tastes great.

I was one of the first people to pimp psyllium seed powder it works but tastes like dirt.

Beans allowed last taper to be fast, they are allowing this one to be fast. Was 60mg 5 days ago, and then 25 mg Monday, huge day taking daugther to eye doctor and twisting his arm for another MRI after intense day at work so went up to 30 mg to get thru the day but I am ready to come down at a good pace and get it out of the way as I feel pred stiffening arteries interfering with bodybuilding and mountain biking. Test chightness on hill climb over 30mg but not under.

Also on 7.5 mg blood thinner
Also on vasodilator

aguywithuc, So maybe I should try some navy beans? My transit time is 12 hours. I do rememeber eating peas and saw a few whole come out but that was before when I was recovering. I may give it a week from now a try but want to thank you for sharing that with me. I have to wonder though do the beans give you gas? and does that make you worry or feal nauseous? I am just a little worried about the excess gas I guess and if it will make me feel uncomfortable. I guess I could start off eating a little every other day to see how it effects me. I assume that the canned beans dont need soaking to remove some of the gas effects? Do you always cook them? or eat them straight from the can? I also read that fresh greens also a good form of RS.

 Again I read that green bananas are great for RS and would think that they are easier on the gas level to eat. I do eat a banana everyday sometimes they are greener than the others. I guess I can buy some really green ones and get them only 3 at a time so I eat only green bananas. Have you tried green bananas and what do you think using them as an alternative to cooked navy beans? OM has some conflicting studies that says that cooking them removes the RS. See below for list of RS quantities in foods. It may be as easy as eating a semi green banana daily and not rish the gas effects of the beans. Bananas are highest..

Examples of naturally-occurring resistant starch[8]
Food	Serving Size	Resistant Starch (grams)
Banana, raw, slightly green	1 medium, peeled	4.7
High amylose RS2 corn resistant starch	1 tablespoon (9.5 g)	4.5
Oats, rolled	1/4 cup, uncooked	4.4
Green Peas, frozen	1 cup, cooked	4.0
White beans	1/2 cup, cooked	3.7
Lentils	1/2 cup cooked	2.5
Cold pasta	1 cup	1.9
Pearl barley	1/2 cup cooked	1.6
Cold potato	1/2" diameter	0.6 - 0.8
Oatmeal	1 cup cooked	0.5

Post Edited (twiggs) : 6/27/2013 8:48:24 AM (GMT-6)

twiggs said...
aguywithuc, So maybe I should try some navy beans? My transit time is 12 hours. I do rememeber eating peas and saw a few whole come out but that was before when I was recovering. I may give it a week from now a try but want to thank you for sharing that with me. I have to wonder though do the beans give you gas? and does that make you worry or feal nauseous? I am just a little worried about the excess gas I guess and if it will make me feel uncomfortable. I guess I could start off eating a little every other day to see how it effects me. I assume that the canned beans dont need soaking to remove some of the gas effects? Do you always cook them? or eat them straight from the can? I also read that fresh greens also a good form of RS.
Again I read that green bananas are great for RS and would think that they are easier on the gas level to eat. I do eat a banana everyday sometimes they are greener than the others. I guess I can buy some really green ones and get them only 3 at a time so I eat only green bananas. Have you tried green bananas and what do you think using them as an alternative to cooked navy beans? OM has some conflicting studies that says that cooking them removes the RS. See below for list of RS quantities in foods. It may be as easy as eating a semi green banana daily and not rish the gas effects of the beans. Bananas are highest..

Nice data :)

When I researche it Navy beans came up very high on the list like 40, just towering over everything else that is RS. My experience confirmed that.

Prevously the pre-soaked and rinsed brand $2.00 gave almost not gas at all.
The cheapo .89 cent brand gave considerable gas but seemed to work better.

After the collapse from exiting RS diet plus other factors I was bleeding out 30 times per day/night catscan confirmed how bad it was PAN colitis and they took my drivers license and put a lot of tactics and pressure on me to admit into hospital bed for a week and promised strong pain meds.

I got the hell out of there with pred and back to work on planting trees etc - jees this was my spring vacation.

I quickly found out that I could not get back onto RS diet until the 6-hour transit time increased. Funny thing was that pepto bismal was so effective I was shocked, never would have thought that.

So one week into pred I restarted RS diet and have had beans every single day this flare rapidly calmed down because I used the 6 tools to slow the transit time and the Navy beans worked their magic.

To answer your question - for some reason I have NO gas on the cheapo but more effective non-rinsed beans this time. I have used both walgreens and vsl3DS daily so maybe I have more good bacteria that is able to process them, gas is supposed to diminish as your flora changes and RS is supposed to over time reset your flora back to pre-UC and correct it - quite the prize to be working towards.

My biggest issues is every time I eat anything I have to rush to bathroom sometime right in the middle of the food while consuming, rush to bathroom at least 2-3 times. I am not allergic to any food. seems like as prednisone tapering down symptoms are coming back. today is not a good day. I have gone to toilet 3time in a matter of 10minutes now having abdominal pain and feeling dizzy so affraid to eat anything.

Usually how long it takes to be comfortable after tapering down from prednisone - does anyone have experience? sorry I am getting so frustrated now(:-

imagardener2 said...
generally you only start tapering pred. if your flare is under control.

I agree. Things that help pred include

- avoid comfort ( which I am totally pigging out on ) or 'trigger' food
- mebeverine from canada
- librax
- immodium
- pepto bismal
- hyocyamine

These things can calm the gut, primarily librax and mebeverine is dual action

There is another one doxy something, not the antibiotic but a colon relaxer helps a lot and a neighbor woman says its all she took for UC and it handled it and eventually went away.

cortisone enema's will also reduce inflammation and cause it to stop emptying so often

Have you tried probiotics? Maybe after all the antibiotic therapy your gut is so depleted of goid bacteria and thats why you are still having the diarrhoea (even on pred). Maybe you also need something to slow down your gut like meveberine?

Have you been tested for C diff?
I do not recommend spices when flaring.

Also, i think Paleo/Primal diet is MUCH better for UC because it eliminates dairy, and allows legumes like chickepeas and beans (RS) as long as you soak them. Dairy, even if no lactose, can still cause issues in the digestive system.