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

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Ulcerative Colitis
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Posted 6/28/2013 7:25 AM (GMT 0)
Yes dear Conquer I am taking VSL#3 DS-(20 Pack) – Prescription Only twice daily, Non-dairy Saccharromyces Bolardii+Mos probiotic, Theralac (bio-Replenshing probiotic) and also given a stool test but came negative. I am following SCD diet based "breaking the vicious Cycle" I do try to enjoy eating Paleo almond flour bread. Most definitely I will try the Meveberine not sure what this is so going to google now-:)

Wishing you all a wonderful peaceful well rested and painless good night!!
Posted 6/28/2013 9:30 AM (GMT 0)

Iqbal N said...
Thank you so much. Today is not a good day spend most of the time in a bed and rested. Right now my diet is mostly on organic grass fed no hormones meats and couple of vegetables as I eliminated all grain, no gluten, no dairy product accept legal cheese and cultured butter on organic almond flour bread and no sugar, I do drink carrot juice added with Pom juice and almost a bootle of Zico water a day along with 4-5glass of regular water.

Sounds good. Add Navy beans to eggs ( very nurtritous eggs are ) add navy beans to lunch add navy beans to dinner.

You also need to re-establish your gut flora balance. I am using VSL#3DS and I have to pay out of pocket and also using the walgreens cheapo '4x Probiotic'.

Consume 1-2 spoons of Psyllium Seed Powder blended rapidly in water and drank before it thickens. This will convert to healing butyrate in your colon, unfortunately it tastes like dirt. Clarification: This is "seed powder" and is smooth not "husk". Juice or whey protein helps. Only when you see no bleeding for a couple weeks can you add or switch to 6 husk capsules which are more abrasive, I take 6 per day, the fiber helps the good bacteria thrive and gathers your stools. Seed capsules fail for me, I get the $2.00 little bags at health store.

Butter on the navy beans makes them very attractive and butter itself has some conversion to butyrate.

Order some cortisone enema's. Pretty dang uncomfortable so I took the cap off asacal enema bottles which my body did not like but the cap was larger and rounder than the cap on cortisone enema's and drilled a hole in the end put on the cortisone enema and with cap insert. Result is instead of 'needle' uncomfortably jabbing me its more like a big round pinky finger, in empty fully into body, out done in seconds. Clean cap for next time. I don't like it but if i am awakened too much at night due to urgency this will help with a better night sleep and it will improve inflammation for the next day.

Get cans of spinach with easy open tops and just dig in, something in there helps.

Post Edited (aguywithuc) : 6/28/2013 3:46:17 AM (GMT-6)

Posted 6/28/2013 11:29 AM (GMT 0)
My comment on navy beans: not every gut can tolerate them, mine for example, which does not like much fiber or beans. I tried eating just a small amount of homemade and "soaked" navy beans unsuccessfully, got gas and small amt. of bleeding.

I will try them again sometime but just wanted to say this. Every gut is different.
Posted 6/28/2013 12:41 PM (GMT 0)

imagardener2 said...
My comment on navy beans: not every gut can tolerate them, mine for example, which does not like much fiber or beans. I tried eating just a small amount of homemade and "soaked" navy beans unsuccessfully, got gas and small amt. of bleeding.

The gut is supposed to change over time to better handle them, then the long term payoff is that the flora is supposed to get corrected to pre-UC.

I originally got gassy, funny how abandoning RS, flaring and 30 bloody bm's per day/night and nasty catscan later I am downing 1-2 cans per day of the gassy type but no gas. I reset my flora apparently with nulear devastation followed by VSL3DS, 4x Probiotic and Dannon natural ( and sugary ) pints of vanilla yogurt. I feel like I have been two different people.

Count out 10 beans, smuggle them into meals 3 times daily. Wait for no gas before advancing. I think the psyllium husk is helping my army of good bacteria along with the double probiotics. I the nuclear devastation blew out a lot of the bad ones.

Post Edited (aguywithuc) : 6/28/2013 7:24:59 AM (GMT-6)

Posted 6/28/2013 3:24 PM (GMT 0)
Hi,

My daughter follows SCD diet (now added rice).If you are a non vegetarian,Its very easy to incorporate indian cooking to this diet as most vegetables and spices are legal.BUT do not use the spices from indian stores as they all have colors added to it. Go with organic ,you will be  amazed to find the color diffrence esp with turmeric.

During flare days, my daughter had:

Breakfast: broiled fish, plenty of home made chicken broth( I squeeze and strain the juice from the flesh,vegetables,bones )

Lunch : butternut squash cooked with little turmeric, chilli ,salt ,pinch of cumin powder.Season it with thin slice of    garlic ,curry leaves and little turmeric.Puree it in blender. Top it with SCD yogurt.

Homemade turkey patties( Tastes like indian cutlets as i make it with lots of onions,garlic ginger and spices).Cooked (same as butternut method) and purred spinach as dip.I fried the baked/cooked patties in coconut/olive oil before serving.

Snacks: ripe spotted bananas

Dinner same as lunch.

U have to adjust/modify the spices and fibrous vegetables  according to your tolerance

My daughter's University of chicago GI ( He is well known) advised us to continue  Indian cooking as all the spices ,onions,garlic, ginger all have anti inflammotory properties.

Posted 6/28/2013 4:35 PM (GMT 0)
For the record I only use basic Navy beans in cans. Both varieties are effective.

Kuner's Navy beans - might only be available here in Colorado. $.89

Eden's Navy beans - rinsed and hardly any gas $2.00


This time even Kuners gives me no gas at all. 1-2 cans per day, in every major meal, great with melted butter or in chili which has lots of vitamin A as all around UC remedy.
Posted 6/29/2013 5:06 AM (GMT 0)
Thank you AguywithuC and Bloom for valuable information, I will go buy some of the things tomorrow and start learning and cooking, this is the first time in my entire life that I have to learn and cook my own things and not to mention shopping, never done before. Yeah, I didn;t know that at indian stores they carry colored turmeric. somehow I feel better today but D is came down 6 so far and almost 10pm here.

Also I would be interested in meeting folks who are happend to be on San Francisco area and have UC so atleast we can learn or better share our dishes with each other. I also find out a scd store and i ordered bunch of stuff from them as I can;t cook and don;t want to starve. ( http://www.digestivewellness.com/)

Have a good night to all and have a fantastic weekend !! - Iqbal
Posted 6/29/2013 6:23 AM (GMT 0)

Iqbal N said...
Thank you AguywithuC and Bloom for valuable information, I will go buy some of the things tomorrow and start learning and cooking, this is the first time in my entire life that I have to learn and cook my own things and not to mention shopping, never done before. Yeah, I didn;t know that at indian stores they carry colored turmeric. somehow I feel better today but D is came down 6 so far and almost 10pm here.

Also I would be interested in meeting folks who are happend to be on San Francisco area and have UC so atleast we can learn or better share our dishes with each other. I also find out a scd store and i ordered bunch of stuff from them as I can;t cook and don;t want to starve. ( http://www.digestivewellness.com/)

Have a good night to all and have a fantastic weekend !! - Iqbal

Old mike says teflon is connected to UC. So I threw out my teflon and bought white ceramic and love them, just as easy to clean and much healthier, ceramic over thick aluminun.
Posted 6/29/2013 1:31 PM (GMT 0)
Excellent tip AguywithUC- right time as today I am going for a major shopping. So far so good except I can;t sleep as every night I woke up 3-4 times and after 3am hard to go back to sleep. I guess this is the side effect from Prednisone. 7hrs and counting with no bowl movement make me happy so far and vey littl flare ( inflammation)

Keeping my finger cross and I will stick to the diet and medication for now. I have to give a credit to my Doctor who is monitoring and providing his guidance each and every day via email and phone call.
Posted 6/29/2013 2:01 PM (GMT 0)
A great article, Must read -

http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/
Posted 6/29/2013 3:12 PM (GMT 0)

Iqbal N said...
A great article, Must read -

http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/

Done with mine. Pimping drugs with 'sometimes fatal events' did it for me.

Need to line up default GI for scripts in case I falter so I dont need ER and GP - not fair to them but I think this flaring business is going to fade out of my life.
Posted 6/29/2013 3:36 PM (GMT 0)
more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/

That is an outstanding letter by a wonderful doctor. Wish he was my doctor.
Everything I read was true even though this is not specifically about UC.

I have had my share of poor and bad doctors and too few outstanding ones, but I've lived in small towns and the cream usually ends up in larger cities IMO.

I'm no longer looking for a miracle doctor to "cure" me, I've done the hard work to get into remission. I just want a doctor who respects my knowledge of my disease and re-ups my meds and doesn't hassle me to get a c-scope every year. Just looking for competence, not always easy to find.
Posted 6/30/2013 3:37 PM (GMT 0)
Yesterday was the best day for me since March 2013, I feel good, I had only two bowl movement and I eat good with no issue and wtached some tv and at night a good family movie, but this morning already ran to toilet twice hoping now it was not start all over again. well, I eat as below.

Breakfast = 2 eggs omelet with a piece of Paleo almond bread and glass of mix orange/Carrot and Zico coconut water.

Lunch = two piece of Chicken with steamed Zucchini, European Cucumber, spinach and Half Avocado

Snacks = Some roasted/unsalted Cashew, dry figs/apricot/home made yogurt

Dinner = By no later than 7pm. either 6oz rib eye or filet Mignon, same vegetables as lunch and glass of Zico coconut water. ( waiting for other supplement as folks recommended to arrive)

Finish the day with VSL #3 D, Vitamin D, a spoon load of Cod Omega 3 fish oil and prescribed medicine.

I guess slowly but surely I am getting control yet still feeling a little scared and trying to learn how to be calm and manage this disease.

Once again, I can not say enough THANK YOU to all of the folks who have contributed their experience and making me feel better in many ways that I am not ALONE. I wish you all pain free, healthy, prosperous life that we have to enjoy and appreciate he creature for all he does.!!
Posted 6/30/2013 7:26 PM (GMT 0)

imagardener2 said...
more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/

That is an outstanding letter by a wonderful doctor. Wish he was my doctor.
Everything I read was true even though this is not specifically about UC.

I have had my share of poor and bad doctors and too few outstanding ones, but I've lived in small towns and the cream usually ends up in larger cities IMO.

I'm no longer looking for a miracle doctor to "cure" me, I've done the hard work to get into remission. I just want a doctor who respects my knowledge of my disease and re-ups my meds and doesn't hassle me to get a c-scope every year. Just looking for competence, not always easy to find.

I am done with my doc and his large out of GI of the Colorado Mountains lets just leave it at that.

Now I just need someone to write prescriptions at my direction if I get in over my head, librax and hopefully not prednisone and of course UCERIS which my former doc repeatedly refused.

Iron infusion would be nice but with Wheat Grass and grass fed beef I do not think it will be necessary again.
Posted 6/30/2013 7:26 PM (GMT 0)

Iqbal N said...
Yesterday was the best day for me since March 2013, I feel good, I had only two bowl movement and I eat good with no issue and wtached some tv and at night a good family movie, but this morning already ran to toilet twice hoping now it was not start all over again. well, I eat as below.

Breakfast = 2 eggs omelet with a piece of Paleo almond bread and glass of mix orange/Carrot and Zico coconut water.

Lunch = two piece of Chicken with steamed Zucchini, European Cucumber, spinach and Half Avocado

Snacks = Some roasted/unsalted Cashew, dry figs/apricot/home made yogurt

Dinner = By no later than 7pm. either 6oz rib eye or filet Mignon, same vegetables as lunch and glass of Zico coconut water. ( waiting for other supplement as folks recommended to arrive)

Finish the day with VSL #3 D, Vitamin D, a spoon load of Cod Omega 3 fish oil and prescribed medicine.

I guess slowly but surely I am getting control yet still feeling a little scared and trying to learn how to be calm and manage this disease.

Once again, I can not say enough THANK YOU to all of the folks who have contributed their experience and making me feel better in many ways that I am not ALONE. I wish you all pain free, healthy, prosperous life that we have to enjoy and appreciate he creature for all he does.!!

Filet Mignon and Salmon is one way of out a flare for me. Lately I just cannot take the salmon 3 meals a day but it used to work for me.
Posted 6/30/2013 10:44 PM (GMT 0)
Same here, I used to eat Salmon all the time and since I been diagnosed can not eat Salmon gave me stomach sour and yeasty smell. also garlic is giving me trouble as well. Today is better so far only have one bowl moment in the morning.-:)
Posted 7/1/2013 4:45 AM (GMT 0)
This is what I found from Dr, Will sites.

What therapies does Dr. Weil recommend for ulcerative colitis?
Initially, patients should see practitioners of traditional Chinese medicine. Their modern approach includes acupuncture and herbal remedies in addition to dietary adjustment and, possibly, massage and energy work, an integrated solution that can yield very good results. Ayurvedic medicine, radical dietary change, and long-term fasting (under supervision) can also be helpful. A low fat, high fiber diet may also provide a benefit, but during the active stages of the illness, it is best to avoid raw fruits, raw vegetables, seeds and nuts because they will irritate the digestive system.

Here are some other measures that can help:

Avoid coffee, including decaffeinated varieties (which may still contain some caffeine), all other sources of caffeine and all stimulant drugs.
Avoid milk, milk protein (casein) and all milk products. Remove any products made with carageenan from your diet. (Read labels on soy products carefully).
Avoid products sweetened with sorbitol, xylitol, or other sugar alcohols.
Take slippery elm in the form of gruel: Combine one teaspoon of the powder with one teaspoon of sugar and two cups of boiling water. Stir well. Flavor with cinnamon and drink one or two cups twice a day.
Take turmeric in supplement form for its anti-inflammatory effects. Choose a brand that provides two grams of curcumin daily.
If cramping is a problem, take enteric-coated capsules of peppermint oil between meals to relieve the spasmodic component of inflammatory bowel disease.
Practice breathing exercises for relaxation.
Because stress can worsen symptoms, take a course in biofeedback or experiment with hypnotherapy and guided imagery to use the mind/body connection to heal the gut.
Consider psychotherapy or cognitive behavioral therapy to work on emotional conflicts that can exacerbate symptoms.
To address inflammation, increase your dietary omega-3 fatty acids by taking supplemental fish oil, start with one gram a day and increase slowly to two to four grams a day. If there is any increase in diarrhea, and cut back the supplement dose if necessary.
Posted 7/1/2013 2:15 PM (GMT 0)
RS diet is working for me, was 60mg pred 2 weeks ago, 20mg now, on 7.5 mg coumadin blood thinner but not seen blood in a month.
Feel I only need to taper for the adrenals as the flare is all but gone.
Cutout cherry coke, cut back lactose free ice cream, still eating almond muffins with coffee and sugary yogurt.
Filet mignon
Navy beans
Dark chicken thighs
oats-n-whey blended with c-monster and passion juice
eggs with swiss cheese
hash browns with olive oil then cooled before eaten ( RS )
psyllium husk
will increase psyllium powder and wheat grass powder
chili - grass fed beef, spinach,brocoli,caggabe,navy beans, packet chili powder ( lowrys ).
2 Raw Adrenals with coffee upon rising
20mg pred will happen after driving into office.
Posted 7/2/2013 4:35 AM (GMT 0)
I added the Lentil yesterday seems like gut is ok. But as I tapering down from Predisone, symptoms are coming back. I don;t have watery D but soft stool ( very very little each time) weekend was good 3-4 BM. Well, this week I suppose to be on 20mg down from 60mg but Doctor told me to stay on 30mg.

I will also go and buy the Navy beans to try to see if I gut can handle that.

Wishing you all a wonderful painless night!!
Posted 7/5/2013 4:13 AM (GMT 0)
Today is Thursday July 4th, I have been inside the house for past two days, struggling with BM as I am ok between 11am to 6pm ( taking prednisone 20mg tapering) but right from 8PM to 9am I am running to bathroom every 2-3 hrs some time back to back within 5minutes. so frustrated so irritated and now I am getting so anxious with abdominal pain and my eyes hurt when I close and feel like someone is poking with thorn. not sure if these are the side effects of medicine or WHAT? I am eating right based on SCD diet ( very strict no cheating) yet seeing symptoms are coming back that scaring the hell out of me.

Can someone please tell me what are the sign of getting better or going to remission as so many have been saying without specifying what those signs are.

Tomorrow I will be calling my doctors for symptoms I mentioned above to see what he has to say without prescribing me another medicine.

My RED WHITE and BLUE is booming in Toilet and I am so so so frustrated now than ever before.
Posted 7/5/2013 1:01 PM (GMT 0)

Iqbal N said...
But as I tapering down from Predisone, symptoms are coming back.

At 20 going to 10 tomorrow.

Please try :

Navy beans, half can with butter melted in
No sugar of any kind in any meal
No dairy no wheat
Wheat grass shots or powder
Combine wheat grass with psyllium seed powder, they both taste awful thats why I combine them :)
Vitamin A with D
Spinach from can
Hydration
VSL#3DS
Raw Adrenals 2 upon rising, pred after an hour

Also if your transit time is abnormally short less than 24 hours slow it down with Librax,immodium,pepto bismal this will allow the RS beans time to ferment.

Post Edited (aguywithuc) : 7/5/2013 7:05:58 AM (GMT-6)

Posted 7/5/2013 1:27 PM (GMT 0)
iqbal

could you please make a "Profile" (see upper left bar on webpage next to Log Off)
I can't remember what meds you are taking while you are tapering prednisone.

My gut could not handle the amount of fiber SCD allows with almond flour, definitely showed it's dislike. It's possible that yours is not in condition to process fiber foods while flaring. Some people use almond butter instead but don't go overboard there, it still has lots of fiber.

It's good your doctor kept dosage of pred at 30. No reason to lower it if you have these symptoms. I can't comment on the eye pain but tell your doctor about it.
Posted 7/7/2013 5:31 AM (GMT 0)
Thank you for guiding me to make my profile and I listed all the meds under "signature" area, not sure if that;s the place where i should have listed all the med or not.

Today was ok day and Doctor asked me to lower the prednisone to 20mg and continue with Canasa and Asacol HD 2tabs 3x a day. Somehow and someway not sure how I just have taken a 2mg 2tabs of Loperamide on early Friday night all day Friday I have a 4BM, Saturday only 3BM and today just one with little bit inflammation and abdominal pain very little. I am not eating a lot of almond flour except a tiny cookie that made of almond flour. I am on only eggs, meat, and live/fresh fish with zucchini, spinach and asparagus.

Keeping my finger cross to continue path of improvement and getting better, I have been at home since March-2013 and it;s time for to start going out and be normal as I am too afraid to go out.

Once again thank you so much for all the folks who are selflessly providing me their unconditional support and I do feel like I am not alone regardless of our virtual relationship.

This site is great.....so Thank you HealingWell.com
Posted 7/9/2013 4:45 AM (GMT 0)
Curious to know, if anyone have use the Homeopathic treatment, and what was the outcome/result?
Posted 7/13/2013 5:12 AM (GMT 0)
I wasn;t feeling well and having all sort of joint pains and abdominal pain. Talked to doctor and today he prescribed me MERCAPTOPURINE (6-MP) 50MG TABLETS as I am already on 20mg Prednisone down from 60mg. Not sure if there is an issue with MERCAPTOPURINE (6-MP) if taken with prednisone?

This is a one of the worse disease and it has been lover 100years not sure why Researcher and pharmaceutical company can not know what's the cause and why there is no permanently cure. So frustrating and making me so depressed.
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