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Ulcerative Colitis
I was a patient of 6 GI Specialists and was hospitalized 12 times during the 3 years I had ulcerative colitis. Here are my condensed notes.
Good Foodavocadobanana berries butter cereal - groovy grahams, honey crunch & oats, oats & honey granola tea - chamomile (calming), peppermint (helps digestion/mild pain reliever), decaf/green tea cheddar cheese (when not lactose intolerant) cranberry juice ezekiel bread farina fish - cod, flounder, halibut, grouper, salmon, sole ginger goat cheese goat milk green tea grape juice hard cheese honey kiwi licorice (multiple beneficial qualities) meat - beef (lower fat content better), buffalo, lamb, turkey, veal, venison mozerella mushrooms (shiitake are supposedly good for autoimmune disease) okra olive oil orange (watch acidity) pineapple (beneficial to immune system but watch the acidity) Recharge (drink) Brown rice pasta scrambled eggs vanilla soy milk spelt bread (no yeast) spice - basil, cinnamon, majoram, nutmeg, parsley, sage, sea salt, stevia, thyme squash tangelo (watch acidity) watermelon yogurt (contains acidophilus) zuccini |
OK Foodcelerycheese - parmesian, ricotta, romano chocolate (has laxative qualities) garlic (causes gas, heartburn) gatorade grapefruit (high acidity) ice cream (causes gas) italian ice ketchup maple syrup meat - chicken, pork, tuna milk (causes gas) oatmeal (fiber content) orange juice/oranges (acidity) shellfish (calamari, crab, shrimp, lobster...) potato sour cream chocolate soy milk tomato juice wine |
Food to Avoidappleapple juice bacon beer calzone carrageenan (ingredient) corn cranberries egg nog fast food hydrogenated oils mint chocolate chip ice cream lemon juice margarine onion peanut butter nuts pepper pizza popcorn pringles teriyaki sauce soda soy sauce white sugar tomato sauce velveeta cheese wheat products (taxes system, made me tired) |
Supplements
- A naturopath created a tincture for me that contained: Licorice, Geranium, Wild Yam, Oat, Comfrey, Shepherd's Purse, Bayberry, Goldenseal, Una de Gato, Wild Indigo, Ioquat
- L-glutamine (I took 500mg Country Life brand)
- FYI (For Your inflammation) by Garden of Life
- Suprema-Dophilus (probiotic blend)
- Tyler Nutrizyme
- Natural Factors RevitalX - this stuff helped significantly
- Fish Oil (Omega 3 fatty acids) - unsure if this helped
- Chiropracty - Unsure if it directly helped the colitis but it did make me feel generally better
- Boswellia - no noticeable effect (I didn't try it for that long though)
- AMP (Aloe) - no noticeable effect and was expensive
- Goatein (Garden of Life) - no noticeable effect
- Primal Defense (Garden of Life) - no noticeable effect
- Never tried acupuncture or traditional chinese medicine for it
- Never tried VSL #3 (not yet available) - I did try this later on when I had the j-pouch and it helped
Anemia
You will probably become anemic if you have bleeding ulcerative colitis for long enough. Iron pills worsened the diarrhea and gave me cramps. Here's some alternatives I used to get iron.- Take black strap molasses
- Eat red meat
- Cook in an cast iron skillet
- Take folic acid and vitamin C to aid iron absorption
Drugs / Medicine
- Calmoseptine (ointment) - This is over the counter ointment helps out a LOT when things get irritated down there
- Asacol / Mesalamine (NSAID) - this was the best NSAID I tried
- Colazol / Balsalazide (NSAID) - didn't help me
- TPN (total parenteral nutrition) - I had this when I was really emaciated and the hospital refused to let me stay any longer. You get to wear this backpack filled with IV supplement bags that connects to a PICC line. The nutrition bags have to be refridgerated and are pretty heavy for an emaciated person to be carrying around. This stuff made me pee A LOT and messed up my sugar levels but at least I didn't have to worry about losing more weight.
- suppositories (NSAID/steroid) - Not only was this inconvenient and humiliating but it seemed to irritate the bowels and increase urgency
- Prednisone (corticosteroid) - this drugs SUCKS but is the best way to keep inflammation down
- solumedrol (IV prednisone)
- 6 Mercaptopurine / 6-MP / Purinethol (antimetabolite) - potentially really bad long term side effects and didn't really help
- Metronidazole (antibiotic) - this stuff tastes horrible; try not to let it touch your tongue!
- Flagyl (IV metronidazole)
- Cyclosporine - had an allergic reaction to this
- Remicade - never tried it (wasn't yet approved for UC usage)
- Dilaudid / Hydromorphone - the best pain killer you can get; an IV dose of this is pure heaven
- Levsin / Hyoscyamine (sublingual painkiller) - oral pain killers normally take upwards of almost an hour to take effect; you can put this one under your tongue and it takes effect within minutes.
- Atavan / Lorazepam / Xanax / Alprazolam (relaxants)
- Fleet Phospho Soda - you'll have to take this for a colonoscopy; this stuff will make you almost throw up! To make it easier to swallow I used to suck on a popsicle before taking it to mask the taste.
- Immodium - This provided some temporary relief from going to the bathroom so often when things weren't really bad
- antidepressants - I tried almost all of them; none of them really worked (I had a damn good reason to be depressed!) and had strange side effects
Side effects of Prednisone
Doctors are likely to put you on prednisone at some point if you have colitis. Prednisone is a horrible drug to be on, especially on the higher doses (30mg and above). Usually I would be tapered from 60mg when I got out of the hospital. Here are some of the side effects I experienced:- inability to sleep
- nervousness
- irritability / mood changes
- confusion
- puffiness in my face
- slight jaundice
- increased urination
- night sweats
- acne
- mild blurriness in vision
- calcium depletion / osteoporosis
- depression (from adrenal suppression)
- If you stop taking prednisone without tapering the dose you can go into adrenal shock.
Notes
- During the colitis I would get bouts of lactose intolerance. When I became intolerant I would eliminate all dairy from my diet. When I wasn't intolerant I still had to watch dairy products for gas (which is really painful).
- Excessively greasy and fried foods caused problems After meals my blood sugar would sometimes bottom out for some reason making me real tired. I would eat a hard candy to get the levels back.
- Painkillers and sleeping pills would make me bleed more
- Painkillers with codeine in them would lessen the frequency of bowel movements
- The least irritating toilet paper I found was AngelSoft and Charmin
- It is VERY important to take time to relax; stress will exacerbate the colitis. I would set aside time every day to do Reiki to myself to relax. I later became a Reiki Master.
- Watch out for developing Toxic Megacolon
- Taking antibiotics coupled with hospital stays can cause you to get a C. Diff (Clostridium difficile) infection (which I got at one point)
- Invest in a toilet seat cover to make your bathroom stays more comfortable; you can get them at Target or Walmart
Colitis Information
Main PageWhat is Ulcerative Colitis
Ulcerative Colitis
Ileostomy
J-Pouch
stopped all drugs....if you have not tried the goat kefir and yougart, you are killing yourself.....I had been hospitalized every year or two for 30 years.....now I feel like I'm cured!!!!
Dilaudid is great. It works well and from my research, has less risk of side effects/addiction than the other alternatives (like morphine). Watch out for doctors that don't want you to have it, though.
The biggest thing I've found is to steer clear of INSOLUBLE fiber. Soluble is good, INSOLUBLE is very very bad.
What sucks most about it is it's very different for each person. They say not to take NSAID anti-inflammatory pain relievers, but they work GREAT for me when I get flare ups.
"That which does not kill us makes us stronger" or it just makes you really, really weak until it kills you. Sorry, 22 years of this has brought me down a bit.
WHat are the simptoms?
Just got a juicer and I am trying Cabbage juice.
At the first symptoms don't waste time with "natural" remedies, go straight to an MD and get a prescription for a strong pharmaceutical anti-inflammatory like "Lialda". That will bring the flare under control in short order. Once things have calmed down you can make the transition to the natural remedies. Skip the yogart. Unless you can find one that hasn't been pasteurized it's worthless. Instead you can re-establish the intestinal flora with a good pro-biotic by "Jarrow". Next add 3 grams of the amino acid "Glutamine" to distilled water twice a day, stir it up and drink it down...it repairs the damaged tissue lining the entire GI. And finally, don't leave out DHA and the essential fatty acids including EPA. Best of luck to all who are living with this nightmare called Ulcerative Colitis (UC). You can beat it but will come back if you get careless.
Ara, sugar is my nemesis as well. In fact, sugar and coffee are the WORST combination period. Closely followed by too much Wheat. (in any form)
Elaine - I completely relate with being clear through certain times of the day and not others. I'm 28 now and have had UC since I was 23. I was undiagnosed and untreated for nearly 5 years. I just bled a bit and nothing more. Was when I became pregnant that I decided to finally go to the doc and get a colonoscopy bc I became much more symptomatic. (4 months pg at this point) I thought I had a Polyp or something, never even considered a disease, so it was 4 months pregnant on the table that I learned this. After, I was put on Asacaol but didn't take it because I had a hangup with taking drugs while I was growing a baby and for the most part I was ok. I caught C-diff in the hospital having my daughter and to be honest, it seems as if my body has never fully recovered from that. I'm a regular bleeder now (couple times daily) but I still don't experience diarrhea like most UC patients. I will just bleed a ton if I don't watch it and I do love my sugar. It's hard but I've switched everything to Blue Agave, cut out most caffeine and barely ever eat Wheat.. When I cheat though, it's like I fall utterly off the wagon, it's not a bite of something naughty, it's a bite .. followed immediately by binging on the 'anti-food'. Some psychological stuff going on there I suppose. I tend to be the worst in the morning, first thing then at night around 7pm. I have found a reason for this though.. Days that I eat only 3-4 times and NOT anything inbetween, I'm better. Days where I'm constantly eating little stuff all day long are the times my system seems to be overloaded. I can't 'pick', it's nit good for me, no matter how healthy what I'm picking at is.
Also, Marshmallow Root is great. The mucilage in it is healing to the intestinal lining while supporting the immune system.. which is a quandary to us for obvious reasons, but it seems to work fine with me. Oats in large amounts make me somewhat acidic (natural oats, stove cooked, plain w some Agave)but a 11/2 cup portion sits fine. I know it's not naturally good for my body however.
AVOCADOS people.. AVOCADOS!!! If you don't like them, try 'n try again. They are one of the most complete foods. Protein, Amino Acids, Vitamins & Minerals! They're great for when we're flaring and needing nutrients without anything caustic to our intestines. Just DON'T eat them with corn chips : ( I know I know.
I am taking Asacol now and it has never stopped the bleeding for me. The only thing that stops the bleeding is eating really really clean, like we said.. the equation is simple in theory.. no caffeine, sugar, 'scratchy foods', wheat products or 'skins'. (and for some, dairy) I do really well with rice (I like to mix in fresh cheese & whatever cooked or fresh veggies I want) 2% cottage cheese with whatever (dill, cucumber, pinch of sweetener, onion or fruits) and soups. Homemade soup has SAVED me so many times I'm learning. I keep some fresh made in the fridge weekly. The BEST for me from all angles has been my delicata squash soup. Roasted carrots, onions, garlic & delicata squash with thyme salt and pepper to taste.. blended with hand blender.. Voila! Instant, nutritious and easily digested food. Mix rice in for added sustenance.
Things that have helped me
-VSL #3
-Organic Foodbased Multivitamin
-Folic Acid (precautionary / protection)
-Cooking with a good Olive Oil, using it neat on anything I can
-Marshmallow Tea throughout the day
-Kefir (it is smooth, high in good fat and calories for when that matters)
-Exercise(when possible, Yoga, Spin)
I want to try the Glutamine & coffee substitute someone here mentioned. I tried Yerba Mate and while I LOVE the flavor, it just doesn't sit well with me. :( I also want to try Cabbage Juice, Goldenseal & Goat Milk Kefir.. We'll see.
First: Stop the diarrhea! Juice of 1/2 lemon..mix with 1/2 teaspoon baking soda..stir 'till foaming subsides then drink. Do this on rising and before retiring.
Second: Identify antagonistic foods and avoid. Your list is good first hand information.
Third: Restore and support the integrity of the immune system. Ulcerative Colitis is essentially an auto-immune illness which occurs when our own immune system, in the process of attacking undigested food within our gastrointestinal tract, attacks our own tissue lining that tract. By taking quality digestive aids with our meals we eliminate that danger. Completey digested food then provides the nourishment necessary for a healthy immune system.
At the heart of the whole issue is complete digestion and the nutritional benefits that go with it.
Hope this helps. Guy W. Sykora
Ive noticed for me that oranges/strawberries/oats/granola and anything with too much linoleic acid will bring about a flare. Search linoleic acid and ulcerative colitis on pubmed... theres a significant connection and then wiki linoleic acid to find out what fats to avoid. Any fats with a linoleic acid concentration of 15% or more might be too much. After following these guidelines, ive been symptom/pain free for quite some time....knock on wood.
And dont be afraid of the negative stigma with saturated fats; its baloney.
You all know what they are so I won't take you on that journey. Anyone out there having trouble coming off prednisone? If so, what are you now doing to stop your symptoms?