Ulcerative Colitis Tips


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Confused

Meet Lynne:

I am a 49-yr-old female and was diagnosed with Ulcerative Colitis seven years ago. I haven’t seen my dr in about 4-5 years. I haven’t need to.

Some more about me:

I live in Minnesota. I think too much. I’m an over thinker.

Symptoms of Colitis:

I am currently in a flare and have blood & mucus in my bowel movements, which are partially solid. Thankfully, I don’t have cramping (never have) and I don’t necessarily have urgency. I am not on any medication. I also have a burning tongue – a strange symptom I have not had before. Sometimes my throat burns, too – maybe even down into my esophagus.

Confused

In the beginning, I followed the Maker’s Diet. I’m wondering if anyone else has gone that route? Also, in the beginning, I took Asacol until it caused inflammation in my liver. Then, I used the enemas instead. One thing I noticed, early on, is that I would get better after I flushed my system. I needed a 2nd colonoscopy, & I got better after I drank the stuff & flushed my intestines. Another time, I was having some symptoms when I got a stomach flu & had diarrhea. I was afraid this would make me worse but, strangely, I got better. MUCH better, as in “normal”. Almost 4 years ago, I had a bad (for me) flare. I told my dr how I’d improved greatly after flushing, & he agreed to let me experiment. He prescribed me golytely. I drank it, flushed, & got completely better. I began to think my “UC ” was bacterial related. I was in remission for almost 4 yrs until now. I even went thru a divorce & ; got remarried -big life stresses & transitions- without flaring. I could eat/drink anything I wanted. Now, suddenly, I am flaring again. Of course, I decided to flush. I used the gatorade/miralax over-the-counter method. I didn’t get better – maybe worse. One week later, I did a salt water flush. Still not better, which makes me very sad. I thought I had a good option with the flushing, as it made me completely better numerous times in the past. Why not now?? Why? Is there something unique to the golytely that worked? This is very confusing to me. I’d sure appreciate any thoughts anyone might have on this flushing issue. I take quality probiotics 3 times/day to replace any good bacteria I may have flushed out.

I am also confused about my burning tongue, etc. Do I have GERD? Crohn’s & not UC? Do I now have an allergy or some food sensitivity? Sulfites? Gluten? The Maker’s Diet says to eat one way. The SCD says another. All options seem so restrictive. I’m not sure which way to turn. :(

Medications and Supplements

I am determined not to take medication. Asacol caused me liver inflammation, & I believe the next level of meds is way beyond what I need & has dangerous risks that come along with it. So, I’m trying to take care of this on my own. I don’t even want to go to the doctor, because I don’t want them to scare me by suggesting strong medications.

I am now taking probiotics, multivitamin, iron, vitamin B12 … all a desperate effort to get better & be as normal as I was just 2-3 mths ago.

written by Lynne

submitted in the colitis venting area




15 Responses to Confused

  1. Angela February 20, 2013 at 8:18 am #

    Hi Lynne,

    How were you taking the golyteyl before? What were you mixing it with? Myralax and golyteyl are similar. It may be the gatorade (if you weren’t drinking that before with your flush). Gatorade has artificial food colorings that can irritate your intestines along with other yucky things.

    http://money.msn.com/now/post.aspx?post=e7f448a0-cd39-411d-9299-1e1e77d079bf

    You might try mixing it with something else. Also, if myralax doesn’t work try magnesium citrate (also available OTC in the laxative section of most stores). It’s the old school way of pre-colonoscopy cleansing. Don’t get the red version again because of food dyes.

    As far as your throat and tongue…its worth seeing a doctor to check out. I get mouth sores before my UC flares/becomes active as your mouth and throat are all still part of your GI track. I also have slight acid reflux (I don’t take meds, I just am more careful with what I eat). Heartburn, acid reflux, etc. are more common as you get older so it may be unrelated to your UC. Just get it checked out, because if its GERD or even Acid Reflux you’d want to get it taken care of before it starts causing damage.

    Good luck!

    Angela

  2. Liz Newton February 20, 2013 at 10:39 am #

    Hi Lynne
    I am just out of my second flare-up and strangely enough I contracted a stomach bug during the flare-up which I too thought would make me worse but I find I am back to normal again! There must be a link to this, is it the bacteria that has cured me? For now, anyway.

    My first flare appeared to disappear very soon after a colonoscopy which may have been the ‘flushing’ you are referring too.

    Aside from a bit of a chocolate munch yesterday in celebration I am going to stick to the SCD diet strictly and hopefully keep symptoms at bay.

    Which pro-biotics do people take?

    Liz

    • Barb February 20, 2013 at 12:22 pm #

      Hi Liz,

      I suffered from a stomach bug last week which caused me to flare. Same thing happen last year around this time. I am currently back on the steroids 40mg and meeting with the Dr. next week about Imuran. Hopefully this will work.

      As far as probioics go. Bev seems to very helpful with information on this.

      Barb

  3. Justine February 20, 2013 at 12:22 pm #

    Hi Lynne,
    Iron supplements can cause intestinal inflammation. You might want to experiment with lowering the amount of iron you take or stop taking it for a while.

    From the Web MD website:
    “Intestinal inflammation, such as ulcerative colitis or Crohn’s disease: Iron might cause irritation and make these conditions worse. Use iron with care.”

    http://www.webmd.com/vitamins-supplements/ingredientmono-912-IRON.aspx?activeIngredientId=912&activeIngredientName=IRON

    Good luck,
    Justine

  4. Lynne February 20, 2013 at 12:29 pm #

    Update since my post: I did see my doctor & did have a colonoscopy/endoscopy. My stomach & small intestines are normal with no sign of celiacs disease. My entire colon is inflamed – a change from the past when it only had sections of inflammation. My flare got much worse after the intrusion of the colonoscopy & biopsies. My dr wants to put me on Imuran, since Asacol caused me liver inflammation in the past. I’m very resistant to Imuran. So, he prescribed me Entocort, which I didn’t want to take either. However, I recognize that my body needs help to get over this flare. I’m on day 5 and am really improving, thank God. Entocort is not intended for long-term use, just for about 2 months, and it specifically addresses inflammation in the colon – as opposed to the whole body, like predisone. So, it doesn’t have the side effects that predisone has. Entocort is crazy expensive, tho, which makes me want to cry. So far, I bought 14 days worth … for $540! Very, very hard to afford. I’m hoping for some patient assistance w/this.

    Angela, I am not looking to flush my system again anytime soon, esp since it didn’t work for me this time. My intestines have been through the mill (and i agree about the Gatorade). I am currently very weak from the increased blood loss during this past week following my colonoscopy, along with eating only minuscule amounts of food. I’ve been losing weight, so my clothes are all too big (which I like, kinda, to a certain extent). Liz, it’s very interesting to me that you’ve improved after system flushing, too. I agree that there must be something to it … perhaps something bacterial. I’ve been taking Complete Probiotics from Mercola.com. However, I just bought VSL #3 (learned of it at this site) and started them today.

    I really want to promote good intestinal health while I let the Entocort do its thing. My hope/goal is to get back into remission and take NO meds. I am making my own kefir now, as well.

    Do others here know about The Maker’s Diet?? Also, anyone here tried AMP Floracel??

    Currently, I’m having only bowel movement per day, mainly solid, and still showing some blood. It’s a big improvement. Still feeling kinda sickly, mainly weak. And still wondering if I’m sensitive or allergic to sulfites (thus the burning tongue?).

    • Angela February 21, 2013 at 7:43 am #

      Hi Lynne,

      Its probably not a sulfite sensitivity as its really rare. Sulfite sensitivity is more common in people with asthma (unless of course you have asthma) and would produce asthma like symptoms. It very rarely causes anaphylactic problems (which is when your throat closes). Nothing about a burning tongue. It could be caused by other problems so have it checked by a ENT (Ear, Nose, and Throat).

      Angela

  5. Lynne February 20, 2013 at 12:33 pm #

    Justine, I didn’t know that about iron. There’s so much conflicting information out there. I’ve heard some people say that taking iron helped their colitis. I’ve been taking it to prevent anemia. Had to stop taking it 7 days before my colonscopy, & I seemed to get weak & pale from the blood loss. So, I’m taking it again. Just don’t know what to do sometimes. :/

  6. joanna February 20, 2013 at 12:45 pm #

    do you think it could be acid reflux? I’ve never had a burning tongue before- just acid that comes up my throat from my gastritis. my UC always affects my stomach so it gets inflamed and makes it hard to swallow foods and I end up throwing up a lot.

    I know l-glutamine powder is really beneficial for your stomach. Have you tried this before?

  7. Graham from England
    graham lee February 20, 2013 at 2:13 pm #

    Hi Lynne,
    Like many here I share your desire for more natural solutions and also the fear of some nasty meds following a doctor visit.

    I noticed your comments on inflammation of the mouth/throat and wondered if EVOO may help? If you haven’t seen the post, Extra Virgin Olive Oil is working wonders on some with UC. It also has a powerful anti inflammatory which may soothe things. It does burn slightly when you take it (at least genuine EVOO should do) but so would liquid Ibuprofen if you drunk that.

    http://www.ihaveuc.com/olive-oil-is-helping-my-ulcerative-colitis/

    2 tablespoons per day is healthy for most people but 3 for UC seems to work.

  8. bev February 20, 2013 at 5:33 pm #

    Wow, Lynne, after reading your story it only emphasizes just how strange this condition really is!

    For alot of UCers, the colon preps make things worse, but I’ve heard the opposite as well, like with you. Perhaps the flushes aren’t working anymore, because nothing ever seems to work very long with UC. Meds, especially.

    I, like you, will not take meds again. I was on asacol for 14 years straight, in differing doses, and it stopped working and started making everything much worse, about half way through the 14 years. Of course, m y doctor said it was the UC, not the meds…so upped the dosage. What a cluster***!

    I wish I could answer your question, but I can’t even answer my own! I take a good probiotic, L-glutamine, vitamin D and asatxanthin, and I have been in remission on this concoction for almost a full year. Hopefully, it will continue. I know that all the meds eventually fail…hopefully the natural route I am on, will not.

    Cheers,
    Bev
    :)

    • joanna February 20, 2013 at 6:39 pm #

      bev, colonoscopy preps always kill me, too!! the last 5 or 6 colonoscopies i’ve had i didn’t even do the colonoscopy prep drink. i just fasted for 3 days and was all clear. i feel like UC is enough of a prep. already so it’s not even necessary to drink that crap.

      • bev February 20, 2013 at 11:04 pm #

        I hear you Joanna! I’m right there with you:)

  9. Lynne February 21, 2013 at 8:28 am #

    Bev, Do you take L-glutamine in capsule form? Graham, do you take spoonfuls of EVOO or mix it into something else? Is there a particular brand or quality I should use? Thank you both your words of encouragement. :)

    lynne

    • bev February 21, 2013 at 8:52 am #

      Hi again Lynne,

      No, I take fermented L-glutamine in powdered form, mixed in juice, but others on this site take it in capsule form, so either is probably fine?

      Cheers
      :)

  10. Graham from England
    graham lee February 21, 2013 at 8:35 am #

    Hi Lynne,
    I usually take 3 tablespoons per day (every 8hrs) but not with food, cant say why but seems to work best.

    EVOO quality is a problem though, a cheap bottle is less likely to be any good. It is suggested you cant make real EVOO 500ml under £4. A fairly cheap mass produced oil has been so good for me but the new “doubtful” bottle (same as before but discounted) has a strong oil taste compared to the expensive one. Many producers blend real EVOO with other or subsequent press oils which are obviously seriously lacking the vital ingredients we need. This is fine for taste on food and some argue more palatable but the content we are looking for should be a strong taste. Pepperiness, bitterness and a cough inducing burn on the throat are all signs of quality, especially the last one, if it doesn’t burn then bin it. EVOO also deteriorates over months and not years.

    Please don’t be put off by this as the rewards are there, its even better than smoking was for me!

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