Ulcerative Colitis Tips


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No Signs of Ulcerative Colitis At All

Bio:

Diagnosed with UC in 2009, but had it about a year before that. Grew up in Canada and spend most of my life there. Became a US citizen and have lived in the United States for ten years. I have a 17 1/2 year -old son, a 15 1/2 year-old daughter and a five 1/2 year old daughter. My children were all born within two months of each other. I live in Minnesota, I’m 44 years old and I have another post which was my first one when I was trying to decide between removing my colon and Remicade injections once a month or so. The doctors thought (at Sanford in Fargo) I would need either of those as I was very ill for about six months and hospitalized, lost weight and was not responding well to the medication they were giving me, which was various forms of medication such as Lialda, Asacol, Rowasa, and Balsalazide.

Wendy in hawaii

Wendy in Hawaii

Symptoms:

Currently I have almost no symptoms except when I eat too much or something too harsh for my body.

Wendy’s UC Story & Update:

The doctor (surgeon) said that I should see a psychologist/psychiatrist because I was so scared to go forward with the surgery to remove my colon. The doctor’s assessment alarmed me as I did not think I was overly scared. I thought surgery was not a great idea, but I was investigating the idea as I was so ill for so long I was becoming desperate. I ended up (to make a long story short) going to Mayo Clinic. The doctors and patient advocates refused to refer me to Mayo Clinic but I just went ahead and made my own appointment without a referral. Lucky for me, I have awesome insurance. Mayo’s conclusion was that, after a CT scan and colonscopy, I showed no signs of UC at all. I should keep doing what I was doing and if I experienced any issues to call them and they would treat me from there. I treated myself with Hawaiian Astaxanthin, Kyoto Chlorella, Spirulina Micro-Algae, Calcium and Vitality 6 from Melaleuca (Vitality 6 conta ins various vitamins and probiotics, calcium again and other things. They didn’t think I needed to see a pshychologist or psychiatrist and that I did the right thing. I do watch what I eat very closely though. I rarely eat meat, I do eat eggs, I do not eat large meals, sometimes I eat things that are bad for my UC, but I am very careful about it. Just thought I would update you on this situation. I was also allergic to the medications they were giving me at the doctors (Lialda, etc.). Found that out through Mayo Clinic. So, I would encorage people to really pay attention to what they are doing with their doctors. They do not know everything. However, if you’re really ill, do what you have to. I did take prednisone when I had to, otherwise I may have never gone into remission.
Where I’d like to be in 1 year:
Maintaining my health as it is.
Colitis Medications:
I treated myself with Hawaiian Astaxanthin, Kyoto Chlorella, Spirulina Micro-Algae, Calcium and Vitality 6 from Melaleuca (Vitality 6 contains various vitamins and probiotics, calcium again and other things.

written by Wendy

submitted in the colitis venting area



Vitality 6

33 Responses to No Signs of Ulcerative Colitis At All

  1. Lizard July 4, 2012 at 7:18 am #

    Wendy,I am so happy for you:)
    Have a wonderful day with your family:)

    • Wendy
      Wendy July 4, 2012 at 6:36 pm #

      Thank you Lizard :) Happy 4th of July to you as well.

  2. Bev July 4, 2012 at 3:49 pm #

    Wendy! For real, girl??

    That is absolutely fabulous!! I thought that you were really sick not that long ago! How great is this??

    I could not be happier for you. I wonder why you show no signs of UC at the moment. So very wonderful…and interesting!

    Cheers, and happy American holiday!!
    Bev:)

    • Wendy
      Wendy July 4, 2012 at 6:35 pm #

      Hi Beth!

      Yes, I was really sick. I was on this site all the time trying to figure out any iota of hope to get info to make myself better. And now I AM better!! I was pretty sure it wouldn’t happen, but it did. I went to Mayo thinking I would get a good surgeon to remove my colon, but about two months before I gradually started feeling better. It was so gradually though, I wasn’t even sure I was getting better. Happy 4th of July to you :) Thanks.

      • Bev July 5, 2012 at 7:28 am #

        This is all just so great! I thought it was you…from before, in another post on this web site!

        That astaxanthin is something I’ve heard about in that it apparently can help stop the bleeding that we sometimes get with UC. I’m getting some me of that, for sure, and I’ll add it to my repetoire of probiotics, l-glutamine, and bananas! No more meds for me…

        Cheers Wendy!

        Bev

  3. OrdinaryWorldWhereRU July 4, 2012 at 4:45 pm #

    I am curious how you found that combo of items to take. I tried looking up the first two items in the list and cannot yet find any research or data. I have found it for sale but that’s all so far. So I am curious about how you found those items, what you learned about them, where you learned about them, etc…

  4. Wendy
    Wendy July 4, 2012 at 6:25 pm #

    This guy I know from church told me about this stuff. He also gave me a blessing (I’m a member of the Church of Jesus Christ of Latter-day Saints), but he suggested the Astaxanthin, which I find made a huge difference (the most difference out of everything). I quoted the stuff from an email from him below (I copied and pasted all the stuff in quotes).

    “This particular article is referring to a study done onmice. Seems all studies are done on mice. Not sure if it works on humans, butit is a start. This research was somewhat recent, so that is good. Astaxanthin isone of my favorites.

    http://mobile.nutraingredients-usa.com//Research/Astaxanthin-shows-benefits-against-colitis-for-mice-at-least

    Do you take fish oils? There are a lot of crazythings people take for colitis, but some of it is just folklore. A web site I oftenuse for natural health remedies can be found here:

    http://www.naturesnook.net/ns/DisplayMonograph.asp?StoreID=7A7848F68DF34ED6A44B61B627AA38DE&DocID=allergy-inflammatoryboweldisease

    The information comes from Natural Standard, which is ascientific and peer-reviewed source for natural remedies. To get access totheir information, you need to pay big dollars. Nature’s Nook (the website I gave you) somehow gives us access to their wealth of information.Natural Standard grades natural products based on the scientific literaturethat is out there. Scroll down to Integrative Therapies, which should give asummary of some natural remedies and what is known about their effectivenessfor colitis.”

    Here’s another one from him:

    “One thing I forgot. I drink Aloe Vera, and it is quitebeneficial. It actually helps the body better absorb the vitamins and nutrientsyou take, so it does not directly address the colitis issue (http://www.lilyofthedesert.com/in_the_news).The best brand is Lily of the Desert – I get the gel form and put it inwater and swallow it down. Kind of nasty, but I do it anyway. Ijust googled it quick and came across this…

    http://www.bastyrcenter.org/content/view/694/

    Like I said, there are a lot of different “solutions”but you just have to see what works for you. Everyone’s body isdifferent.”

    Here’s another email from him:

    “Another supplement that is quickly becoming one of myfavorites is astaxanthin. This is becoming very popular. You should researchit. A lot of top nutritionists recognize that this and Spirulina are greatnatural sources for key nutrients. I did find this interesting article onastaxanthin. I guess if it works for mice, it might work for humans.

    http://mobile.nutraingredients-usa.com//Research/Astaxanthin-shows-benefits-against-colitis-for-mice-at-least

    As an added note, make sure you get quality stuff. The toprecommended brand for both is nutrex Hawaii. Here is the site.

    http://www.nutrex-hawaii.com/

    Hope this all helps you. It helped me anyway. Plus the Melaleuca Vitality 6 vitamins and watching what I eat. Some days the same thing that didn’t bother me will hurt though, so it was very difficult to figure out what to eat. I can’t eat applesauce for example and that is a big one suggested by people I’ve seen. I also can’t eat meat most of the time… did today though and I’m fine.

    If I find more emails linked to articles or resources where studies are done on these supplements, I’ll post them on here.

    Best of luck to you with your UC. And Happy 4th of July!

    Wendy

    Wendy

  5. Wendy
    Wendy July 4, 2012 at 6:30 pm #

    Ug. I wrote a LONG list of resources and it didn’t publish! I’ll try again.

    Mostly quoted from a guy who gave this info to me. He’s also my home teacher.

    Another supplement that is quickly becoming one of myfavorites is astaxanthin. This is becoming very popular. You should researchit. A lot of top nutritionists recognize that this and Spirulina are greatnatural sources for key nutrients. I did find this interesting article onastaxanthin. I guess if it works for mice, it might work for humans.

    http://mobile.nutraingredients-usa.com//Research/Astaxanthin-shows-benefits-against-colitis-for-mice-at-least

    As an added note, make sure you get quality stuff. The toprecommended brand for both is nutrex Hawaii. Here is the site.

    http://www.nutrex-hawaii.com/

    Are you feeling any better? It will probably be sometimebefore you see the effects (some people did not see any improvements), but itis worth a shot. The Spirulina, Chlorella, and Astaxanthin that I suggested youlook into are mostly just natural “superfoods” that have very powerfulhealth benefits, so it is not like taking harmful medications with scary sideeffects. In fact, most vitamin supplements (that are fabricated in the labs)are potentially dangerous and not very effective (that is why I likeMelalueca and their Oligo technology). Most vitamins are just isolated compounds.What they fail to recognize is that it is all of the nutrients working togetherthat provide the health benefits – which you can only get in the “wholefood” form.

    Even though these supplements are mostly plant-basedproducts stop taking them if you have adverse side-effects.

    Aside from the ones I mentioned, I take a ton of supplementsthat seem to work well for me – most are plant or animal-based productsfor the reasons I mentioned above. Not sure if I shared this article withyou on astaxanthin. This particular article is referring to a study done onmice. Seems all studies are done on mice. Not sure if it works on humans, butit is a start. This research was somewhat recent, so that is good. Astaxanthin isone of my favorites.

    http://mobile.nutraingredients-usa.com//Research/Astaxanthin-shows-benefits-against-colitis-for-mice-at-least

    Do you take fish oils? There are a lot of crazythings people take for colitis, but some of it is just folklore. A web site I oftenuse for natural health remedies can be found here:

    http://www.naturesnook.net/ns/DisplayMonograph.asp?StoreID=7A7848F68DF34ED6A44B61B627AA38DE&DocID=allergy-inflammatoryboweldisease

    The information comes from Natural Standard, which is ascientific and peer-reviewed source for natural remedies. To get access totheir information, you need to pay big dollars. Nature’s Nook (the website I gave you) somehow gives us access to their wealth of information.Natural Standard grades natural products based on the scientific literaturethat is out there. Scroll down to Integrative Therapies, which should give asummary of some natural remedies and what is known about their effectivenessfor colitis.

    If I can find anymmore emails from this person I know with studies I’ll also post them. the above is all copied and pasted emails from my Home Teacher from Church.

    Happy 4th of July to you. I hope all goes well.

    Wendy

  6. Wendy
    Wendy July 4, 2012 at 6:37 pm #

    Oh, I guess the original one DID post!!

  7. Active UC'er July 6, 2012 at 9:20 pm #

    Hi Wendy – I’m just wondering. How did they determine you were allergic to Lialda?

  8. Wendy
    Wendy July 7, 2012 at 6:51 am #

    I don’t know. The doctor at Mayo Clinic just told me I was. I can give you some of my guesses (but they are just my guesses). I think the reason is that when I took the medication I could barely get out of bed because my joints ached so much – all of them – ones I didn’t even realize I had. I would just curl in a ball and think about how to get out of bed and when I stopped taking it, I would be far better. That’s what I told the doctor, so that must be how they determined I was allergic to it.

  9. cas127 April 26, 2013 at 5:01 pm #

    Wendy,

    Came across your story when Googling UC and Astaxanthin.

    I came across Astaxanthin when I noticed that the day after eating plain shrimp, my UC seemed to get better. A little Googling pointed out that shrimp contain a lot of the powerful antioxidant Astaxanthin.

    Now I take the Astax in pill form (Source Natural – 2 MG) and it seems to help – but not as much as the plain shrimp do.

    Interestingly, I found another treatment by pure accident/dumb luck – melatonin.

    Had never heard of it as a UC treatment but between taking melantonin and astax daily, I have been able to completely eliminate mesalamine – which I had been taking for 14 years to only middling effect.

    The fact that both melatonin and astax are potent antioxidants makes me wonder if there are biochemical mechanisms to UC that most Drs. don’t really know/think about.

    • Wendy
      Wendy April 29, 2013 at 8:22 pm #

      I think there’s a lot the doctors don’t know about and I’m going to try that melatonin for sure. My daughter occasionally takes it to help her sleep so we have some in the house and she doesn’t take it anymore. I will not eat shrimp though… disgusting.

      The doctor at Mayo actually told me that a lot of those drugs are placebos and don’t really help. They agree with my method especially if it is working. I think a lot of people react differently according to their particular type of UC and it is difficult for doctors to come up with a blanket “cure” for everyone outside of removing your colon.

      Thanks for letting me know about the melatonin. And the shrimp, even though I won’t eat that.

      • Maria May 13, 2013 at 3:02 pm #

        Hi Wendy, just curious about how you’re doing now? It looks like this post was written awhile ago.. I just started taking the astaxanthin today, so hopefully itll stop the bleeding for my UC. Im also on a mesalamene suppository, vitamin D, L-glutamine and will soon start on a probiotic.

        • Wendy
          Wendy May 14, 2013 at 1:12 pm #

          Currently I am in a flare. I think it is from eating things I knew were bad for me but I was doing so well, I thought I could. Apparently I cannot. I was pigging out on nuts, flax, protein rich things. I shouldn’t have been doing that. Every time I ate it it made my guts worse. I am slowly trying to get better. I also stopped taking my vitamins and supplements full-time, I would take it every second day on average, once. I should be taking it three times per day. I’ll try to remember to post again to let you know if I get better.

          • Maria May 15, 2013 at 8:56 am #

            aww Im sorry to hear you’re in a flare. I do the same.. once I see improvements, I tend to stray away from what I know is good for me and start eating what Im craving instead (which is usually the bad foods for me).. It definitely takes will power to stay away from those darn trigger foods that we know dont agree with our colons.

            Hope you get our of this flare asap, wishing you the best..

  10. Wendy
    Wendy May 15, 2013 at 9:00 am #

    Thanks. Yeah. Weakness of willpower. It’s so difficult not to eat something you know is usually bad for you when you feel great. Thanks. I’ll try to remember to post if I’m better. I usually drop writing on this site as soon as I’m better! When I’m in a flare I am glued to this site.

  11. Wendy
    Wendy May 15, 2013 at 9:01 am #

    It’s good to hear I’m not the only one that does that! Eats what I should’t knowing I shouldn’t. I feel so immature doing that, but it tastes so good!

    • Jill August 9, 2013 at 10:04 pm #

      Dear Wendy,

      Since you wrote you do not eat red meat what is you iron source? what is you current HBG level?

      thanks so much,

      J.

    • Maria October 16, 2013 at 9:07 am #

      Hi Wendy,

      Just checking in to see how you’re doing. Did you manage to get yourself out of the flare? I purchases some spirulina (NOW brand) but Im kind of hesistant to try it out just yet. I have recently started on a few natural supplements and am feeling alot better than I was a few months ago. Very closely watching my diet, but still bleeding, however, no urges to go or tissue/mucous. Have never suffered diarrhea (was more constipation), but I am noticing now that I am getting cramping in the abdominal area (never experienced that with UC at all until just before I started the supplements). I am on no meds whatsoever, and although the bleeding has been slowly getting less and less each day seems like, its still there. I would love to NOT see it everyday when I go to the bathroom…

  12. Wendy
    Wendy October 20, 2013 at 8:45 pm #

    It’s going really badly as far as Ulcerative Colitis is concerned. I stopped taking the supplements, which I am fully aware is monumentally stupid. Anyway, my stomach hurts all the time now. There is no break. I usually weigh 155 and now I weigh 128. I just ate dinner and cheesecake for dessert after not having eaten for two days, which is crazy I know, and I went to the washroom 15 times in the past two hours. I can’t see how I will avoid losing even more weight. If I get below 118 I’ll go to the Mayo Clinic if our insurance still accepts it.

    Jill, my iron was a little below normal before, and now I’m sure it is even more below normal. I’m taking an iron supplement per day though, so maybe that helps. I am trying to take the supplements again. I got a part-time job which is quite physical. I really enjoy it, but my stomach aches all the time and if I get too physical, it hurts even worse. I push huge shopping carts around (in groups of nine carts) for the job at times and I’m so weak now, I can barely push them. The customers tease my (which riles me considerably) but I don’t say anything and try to be good natured about it even though it is a tremendous struggle. The rest of the job is very good, but again, my ulcerative colitis gets in the way. If it wasn’t for that, I would have such a great time at work. I never told them I have UC otherwise, they certainly wouldn’t hire me. If I have to go to Mayo Clinic though, they are bound to discover something’s up. I haven’t actually felt hungry in about three months. When I start eating though, I realize food tastes good and I eat an entire meal like a regular person. Well, probably less, but close. This sends me into a horrible attack always. I just feel crazy. I feel anorexic when I’m not eating and I feel like I’m asking to be ill when I am.

    I went to dinner with my friend I hadn’t seen for a long time last week. She gained quite a bit of weight. I obviously lost even more than when she saw me last time (about a year before that). At dinner, I didn’t want to eat the meal for obvious reasons. We always eat out about once per year. So I looked incredibly rude. “Oh, I couldn’t possibly eat any more than a few nibbles” while she packs away an entire dinner. It looks really bad. So I forced myself to eat half of it (actually tasted awesome once I started eating and I would have had the entire thing if I wasn’t so aware of how ill I would be afterward). That dinner made me lost about five pounds over the next couple of days of violent crapping.

    My friend’s dignity is intact, and I’m even LIGHTER. I still appear OK, but it is at the point where if I lose any more weight, it will start looking unattractive. I look a tad bit unattractive right now (weight wise, I’m not talking wrinkles and gray hair and droopy eyes and stuff). If I lose more weight, it will become progressively more repulsive to gaze upon my body. It will be a thing where you gasp because of the shock of seeing another human being so thin. I’ve done that before when I’ve seen grossly thin people. Maybe the very young can still look good doing that, maybe, but when you’re approaching 46, it becomes challenging.

    I do eat red meat, when I don’t have ulcerative colitis, so pre-2008 I would eat it. I never liked it particularly, but it was fine. Acceptable, if someone else cooked it. Unless it was a roast and I cook a fairly good roast in the slow cooker. I would eat it now if there were no repercussions to doing so.

    Anyway, I am struggling to pull myself out of the hole before it is too late. I will take whatever drug they want to give me if it gets bad enough, maybe. I can say I really hate hospitals to the point of maybe I would rather die. They don’t even do those things to you in prison what they do in the hospital. I so despise it.

    We’ll see what happens I guess. If I could only remain loyal to my supplements and vitamins I might stand a chance. Prednisone doesn’t work on me, a week in the hospital with IV steroids barely worked on me, and all medication I’ve taken I’m allergic to. There’s more I can try and I can try Remicade, but the side affects of Remicade are cancer and lupus to name a few. Who the heck wants to inject their body with that crap?

    Anyway, that’s how it’s going right now. I’ll read your story again, I just had to reply before I forgot to totally.

  13. Col October 21, 2013 at 12:41 pm #

    Hang in there, Wendy. You pulled yourself into remission once! I’d say start by getting back on track with your supplements. Sending you healing vibes and best of luck.

    • Wendy
      Wendy March 4, 2016 at 8:57 pm #

      Sorry :( I took so long to reply. I tend to ignore anything about UC when I am well, and when I am sick I am obsessed with it. I slowly began taking my supplements again and I got better. I definitely have UC still, meaning I have a bad stomach ache and issues if I eat a full meal and not just little snacks, but if I control it, I am good. NO drugs! Thanks for being kind to me and rooting for me. I did end up going to Mayo Clinic. They didn’t do anything because they know I don’t like it. They gave me a colonoscopy and said I didn’t need to remove the colon and sent me on my way. Any time I wish to remove my colon they will do it for me, but a sit stands, they said, I would probably be ok but to call them if it gets worse.

  14. Wendy
    Wendy October 21, 2013 at 7:03 pm #

    Thanks Col :)

    • Peter November 16, 2015 at 8:19 am #

      OMG. Go vegan and checkout YouTube. There are so many videos now on how people cured UC. Looks like animal products are a big problem and Cabbage juice can be a solution.

      Best wishes

      • Wendy
        Wendy March 4, 2016 at 8:58 pm #

        I will look into it. I almost gag thinking of Cabbage juice, but it’s amazing what I can eat if put in a blender and added to other things. Thanks. I may do it. I am agreeable to alternate solutions as I’ve had great success with supplements.

  15. Maria October 22, 2013 at 9:51 am #

    Im not sure if you mentioned it preveiously, but Im n my lunch break so just quickly snanned your update. I notice that you mention eatinv cheesecake. Have you tried an elimination diet to see what types of food are irritating for you? Ive come to realize that I cannot do dairy and sugar while Im in a flare, so right now Im eating strictly meat (only organic) and some veggies, egg whites, and some fruit (mainly blueberries). i make my own ice cream using coconut milk and its just as good and soooo ridiculously simple. Im basically following some of the guidelines from the pale, gaps, and scd diets and along wiht taking my supplements. Things are going pretty good, still abit of blood, but the cramping is getting less and less each day. I did lose 20 lbs in a span of 2 months when I started my elimination diet, and like you, I hate it..I would LOVE to gain it all back and then some, but Im at the point now where Im slowly testing out foods to see if I can start integrating them slowly back into my diet (today was abit of avocado, so far so good..).

    wishing you all the best.

    • Wendy
      Wendy March 4, 2016 at 9:01 pm #

      I don’t understand the elimination diet. I have heard of it a lot. I will have to google it. I do eat avocados lately and my body likes them!! I just actually started that this week, so it is a long way from when you replied to my comments, but I am always working on it. I just don’t do UC research when I am feeling well, which is foolish, but I am just so busy. Thanks for the tips. I am going to do it now that I am feeling well. I know that when I am sick I don’t want to try anything. I can handle a sore stomach at the moment.

  16. Ethan June 11, 2015 at 11:52 am #

    How are you doing now Wendy? I’m trying spirulina and chlorella now.

    • Wendy
      Wendy March 4, 2016 at 9:04 pm #

      I use both of those things, spirulina and Chlorella. They are amazing. I am doing really well. I can even get fat from eating. I still react badly to eating anything too much, usually can’t eat very much at restaurants or family dinners, but I can snack a lot on little things.. not high fiber though. Thanks for the inquiry. It’s really nice people comment on here. I feel so isolated when having issues and I also feel like no one really understands, but thinks they do. Only another UCer gets it!

  17. Salsaflamenca March 3, 2016 at 2:49 pm #

    Hi Wendy,
    I hope that you have been able to get out of the flare without the help of any heavy drugs but even if you did, I read stories where people get off remicade and such and it really helps when your colon is not cooperating.
    I am on remicade since december and I am hoping that one day I will be able to stop it but lets see. I am trying different kind of supplement and watch my diet so closely that I dream that I eat sugar, cakes, crepes, burgers…. so tough. It is probably the candida I have which is controlling my dreams, who knows?!? (I asked to be tested for candida and apparently I have it)
    Good luck to everyione with this UC…

  18. Wendy
    Wendy March 4, 2016 at 9:11 pm #

    I did get out of the flare without drugs. Thanks for asking. It is never fast and so gradual that I am still in panic mode for a while. It is so difficult to tell what is going on when having a recovery period. It’s so slow. Even now my stomach hurts if I eat too much of anything or something high fiber, like a salad or high fiber cereal, or fruit. I also fart a great deal with these things, and bloat. It’s not good because I have to go to work! In general though I am not dropping weight like mad and I have to actually watch it so I don’t get too fat! I am addicted to hot chocolate because it doesn’t bother my guts at all. Very bad stuff for my body seems to agree with my colon: hot chocolate, raman broth, chicken broth (the fake stuff – no grease at all), puff corn, but of course, I eat whatever I want and deal with issues. If I’m having difficulties, I just eat the bad stuff and give my guts a break. I try to eat the supplements, but I am horrible at it. It’s like I’m asking for it (another attack). I tend to talk on this website for hours when I am having a bad attack, but when I am doing well, I never look at it! Same as my supplements I will try harder though. I don’t want another attack. I think I am going to try that vegan thing like another person suggested on here and I may try the elimination diet. I just work a physically labor intensive job and I need food when I need it. I hope your candida is cleared soon. I also do not like the doctors around here. I never go unless absolutely necessary.

  19. Holly January 13, 2017 at 5:33 pm #

    Hi Wendy,

    I’ve been following your story and was wondering how you have been doing since coming out of your last flare? I’ve started taking Spirulina and Chlorella and I’m hoping to see some good results.

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