15 Years of Colitis and Medication Free For A LONG Time

Introduction:

I am a 44 year old mother of 2 children and I was diagnosed 14 years ago in 1997. I have been living with ulcerative colitis for 15 years (had it for a year before I was diagnosed.)

Over 15 Years of Colitis:

I spent the first 7 years after my diagnosis, depressed and on various meds that didn’t control the disease and only made me feel worse. I decided to do my own research and try to control my UC in a more natural way.

I have been off all meds since 2004

and have been in remission

with only the odd mild flare up.

comic Long Ulcerative Colitis Remission

I wanted to share my remission maintenance plan with all of you and to thank Adam for this website. I wish it had been around when I was first diagnosed! (note: I am not suggesting that anyone else go off their meds – just wanted to share my story and what has worked for me)

Don’ts:

1.  Sugar – limit sugar in your diet and eliminate it completely during a flare
2.  Soda/Pop – never drink the stuff
3.  MSG – Avoid foods that contain Monosodium Glutamate
4. Aspartame (brand names NutraSweet, Equal, Spoonful, and Equal-Measure) – so bad for you for so many reasons
5. Antibiotics – never take them unless you absolutely have to. My worst flare ever was causes by taking them. They will kill off all of the beneficial bacteria in your intestines
6.  Anti-inflammatory pain medications, commonly referred to as NSAIDs (Ibuprofen, Motrin, Aleve) – never take these, us plain Tylenol instead. NSAIDs  will stop your body from producing prostaglandin which helps line the stomach with a protective fluid (called gastric mucosa). I believe that taking too much of these can actually cause colitis
7. Processed foods
8. Smoked meats
9. If you can’t pronounce it – don’t eat it!
10. Meat tenderizers – don’t use them and don’t eat at restaurants that use them ( they contain an enzyme that breaks down meat fibers but they also break down you gut!)

Do’s:

1.  Drink LOTS of water
2. Eat lots of natural, sugar free yogurt (without artificial sweeteners – use berries or honey to sweeten)
3. Take 1 tbsp of Flax Oil every morning
4. Take a probiotic supplement everyday
5. If you are not allergic to bee products, take 500 mg of Bee Propolis twice a day
6. Get plenty of sleep
7. Practice deep breathing and relaxation techniques
8. Eat as much all natural food as possible
9. Try to laugh every day
10.  Stay positive!

written by Kathleen

submitted in the Colitis Venting Area




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19 Responses to 15 Years of Colitis and Medication Free For A LONG Time

  1. Adam
    Adam January 3, 2012 at 8:02 pm #

    Hey Kathleen,
    thanks again for your posting! I’ve learned alot from your experience.

    I was wondering if you have ever experimented with coconut water? I just started drinking it and love it, and was wondering if its something you drink too?

    • The Bird January 4, 2012 at 12:23 pm #

      Adam, do you eat any yogurt? Have you had an issues with milk proteins?

      • Adam
        Adam January 4, 2012 at 1:01 pm #

        Hi The BIrd,

        I used to make my own yogurt early last year, but I have stopped doing that, and haven’t had any yogurt for 4-5 months now. As for milk proteins, I definitely had all sorts of problems with milk before I stopped drinking it two years ago. Also, I have dramatically cut down on my cheese intake, so I don’t do much of that at all anymore, but a tiny bit of cheddar and some other hard cheese very rarely.
        HOw about you? Do you have any feelings towards milk products for your body?

        • The Bird January 5, 2012 at 7:51 am #

          Hi Adam,

          I know that milk products do not agree with me that much, so I do not consume any dairy at this point. I tried raw milk for a day, hoping that all the enzymes and probiotics that it contained would help but it did the opposite. Do you do anything for probiotics? Sauerkraut or pickled veggies?

          • Adam
            Adam January 5, 2012 at 8:24 am #

            Hey The Bird,

            I’m pretty much the same with milk stuff too.

            I did start taking VSL#3 probiotics about a month ago, but I never got into taking them daily like I was hoping to do to really test them out. Instead, I’d have one here and there. and I haven’t had one now for over a week. So I’m not the best person to talk to about them, but there are quite a few others from the site who have had good sucess with probioitcs.

            One person named Shelly really seems to have had a great go with them. As for sauerkraut or pickeled veggies, I don’t do much of that either. But hoping to get more into some sauerkraut since I miss that so much, but I’d probably have to make it myself since I don’t trust what the stores might be putting in it..

    • Kathleen January 4, 2012 at 7:10 pm #

      Hi Adam,
      I have not tried coconut water but I did experiment with coconut oil a few years back. I found that it had a laxative effect on me and so gave it up. I have read a lot about the benefits of coconut though and I think I will try to incorporate some coconut milk/water into my morning smoothie. (I am also a big fan of smoothies!)

      Thanks for posting my story, many of the points listed in my maintenance plan might be common knowledge but thought it might help those who are new to UC.

      PS – your cartoons are hilarious! Love them!

      • The Bird January 5, 2012 at 7:53 am #

        Kathleen,

        I’m very happy to hear stories like yours and I’m very happy that you have found a way to control your colitis without meds. Do you have Colitis or Ulcerative Colitis?

        You described your maintenance plan, what do you normally do during flare-ups? I’m trying and trying to get the current flare-up under control but it seems to be kicking my butt :) Any recommendations would be very much appreciated.

        • Kathleen January 5, 2012 at 7:55 pm #

          Hi The Bird,

          I have Ulcerative Colitis. I have been fortunate enough not to have had any bad flares for several years now but sometimes if I feel a flare coming on (I had a mild flare about 9 months ago), I do the following:

          – cut back on physical activity (you should rest as much as possible, take time off work if you can – that is if you are even able to go to work- your body needs all of its energy to heal itself so don’t try to be a hero!)
          – add 2 oz of Aloe Vera gel to my morning smoothie (my smoothies contain ripe bananas, blueberries and yogurt — you could just use ice or water to thin it out if you can’t eat yogurt)
          – increase my probiotic supplement ( I open the capsules and sprinkle them in my smoothies if it’s during a flare since the plastic of the capsule will likely just go right through me before I can digest it)
          – eat easy to digest proteins ( just like your body needs rest to heal itself, it also needs fuel/energy) – egg whites and fish are good options and the omega fatty acids in fish are also good for UC
          – avoid any type of stress (not always possible but it’s particularly important during a flare)
          – LOTS of water (filtered or bottled, no chlorine)

          Hope this helps, good luck and I wish you all the best with getting your flare up under control.
          Try to stay positive!

          Kathleen

  2. Rebeka
    Rebeka January 5, 2012 at 10:25 am #

    Hey Kathleen! So great to hear you’re off the meds! What were you first prescribed and how did you get off them? Did you try to go med-free before 2004 or was your first attempt successful? How was it initially?
    I would love to get off my meds too, in a few months maybe. My thinking is: I’ve had IBD for at least two years before I was diagnosed (Oct 2011) and I wasn’t constantly flaring, did fine without the meds for the most part. So now that I know what’s wrong with me, I’m hoping I can be off my medication sometime and avoid another flare with a maintenance plan like yours – mine is very similar.
    Oh, and the coconut products: I drank a lot of coconut water when my flare was bad, because of its electrolytes. Sometimes I cook with coconutmilk or add it to my smoothies. Don’t even know if the milk has any special benefits but I like it.

  3. Bev January 5, 2012 at 6:28 pm #

    Hi Kathleen,

    I too, have had ulcerative colitis (now pancolitis) for almost 15 years. I believe the flare up that I now have was caused by the strong antibiotic that I had to take a few months ago, when I had pneumonia. This is the worst one I have ever had, and took 12 asacol pills per day for 8 weeks, plus a pentasa enema every day for two weeks. Before this flare, I was on 6 asacol per day to retain remission. The extra meds worked, but as soon as I cut them down, the wosrt flare came right back. On my own, I have gone back up to 12 asacol and an enema every day again, but I can’t stop the bleeding or the pain.

    Three days ago, I decided to try a probiotic (2 pills per day), and funnily enough, alot of the pain has disappeared! My GI wants me to do Imuran and Remicade, which I absolutely refuse to do.

    What are you doing to keep yours in check? I would appreciate any help…

  4. Surfer Christine
    Christine January 6, 2012 at 2:57 pm #

    Hi Kathleen, so good to read you this morning! There is hope ;-) I think exactly like you; i’m 43 ,2 kids, battling this illness for about 20 years. First 10 years with loads of meds, i was scared and didn’t know better… Now living normal life ,no meds (except in bad flare ups,which seems to happened once a year,around the same time!) Been hospitalised the last 3 years for a week. Just got back yesterday from hospital.I’m on Pentasa and prednisolone. Oh,well, i hate taking it,but had no choice,as all my healthy diet,supplements,daily yoga and meditation didn’t cut it this time! Do you see a Gastroenterologist regularly for colonoscopy check up?I hear especially after 40,it’s a must to get checked every 3 years if you have flare ups. I’m booked in in 1 month.haven’t had one in 14 years!!! The thing is when i’m good,all the preps before colonoscopy aggravate my symptoms. Anyway,i just wanted to say that you’re on the right track and i believe that laughing more and feeling grateful and happy about your life does make a difference.So please ,less stress and more joy for 2012 !

  5. George in Napa January 6, 2012 at 3:50 pm #

    Hi Kathleen,
    Congrats on being med free! I hope that some day soon I can toss the meds for good.
    I am curious…. do you eat food that contains wheat?
    Thanks for all the tips that you shared.
    Best wishes,
    George in Napa

  6. Chris January 7, 2012 at 7:21 pm #

    Hi Kathleen,

    Could you share the recipee for your morning smoothie and what it does to help?

    Thanks

    • Kathleen January 9, 2012 at 7:37 pm #

      Hi Chris,
      My morning smoothie is pretty simple, I use 2 or 3 ice cubes, 1 ripe banana, about half a cup of frozen blueberries, 3 or 4 oz of natural sugar free yogurt (no artificial sweeteners), and 1 tbsp flax oil.
      This smoothie helps me because it’s full of vitamins and easy to digest. The probiotics in the yogurt are always beneficial for colitis plus the flax oil contains omega 3s which are known for their anit-immflamatory benefits. Blueberries are rich in polyphenols, which have an antioxidative effect. Studies have shown that the combination of blueberries and probiotics reduces inflammation-inducing bacteria in the intestine. If I feel a flare coming on, I also add 2 oz of aloe vera gel as well. I find it really reduces the cramping and aids in healing.
      Hope this helps.

      Kathleen

  7. Kathleen January 7, 2012 at 7:51 pm #

    Hi Rebeka,
    I was prescribed Asacol and took between 9 and 12 pills a day. I did go med free prior to 2004 because I got pregnant again with my 2nd child in 2001 and I didn’t feel comfortable downing all those drugs while I was pregnant. It didn’t really make a difference to me though because Asacol never really did stop me from flaring, it made my flares milder but that is all. So when I went drug free in 2004 it was not a big deal for me. The only other meds I have had we’re Salofalk suppositories but they didn’t help me either. Good luck and don’t be afraid to wean yourself off the meds to see how you do, worse case scenario, you just go back on them.

    Hi Bev,
    Yes, I definitely think that the antibiotics caused your bad flare – I have been there and done that and will never take them again unless it’s for a life threatening reason! And I am also not surprised that the probiotics are helping you, they are an important part of my maintenance plan. To keep my UC in check I follow the maintenance plan that I described above… Sometimes though I would get too confident after being in remission for years and I would think, “hey, I must be cured!” and then I would stray off of the plan and maybe eat some snacks containing MSG or processed foods and then I would get subtle signs that a flare was coming on and that would quickly force me back on the plan. Keep up with the probiotics for sure and if they continue to help you there will be no need to add new meds!

    Hi Christine,
    So glad that you have managed to get off the meds for the most part. If you have to take them every once and awhile, so be it, but if you can get by most of the time without them that’s awesome! And so much better for your body. Yes, I have a Gastro doc and see him once every 2 years for a colonoscopy. Like you, I also find that the prep aggregates my symptoms but I still go to get screened just to be safe. My GI doc has stated that he is amazed at how good my scopes look with no meds. Of course he keeps recommending that I take them but I keep refusing and he can’t really argue when he sees my results! Keep smiling Christine! ;o)
    Hey George,
    Yes, I seem to be okay with wheat, I have read a lot about all the reasons to avoid it, but I have not had any issues with it. Everyone’s body chemistry is different though just like some people have allergies and other dont. I do however stay away from wheat if I feel a flare coming on, just to be safe. Best wishes to you too, hope you’re doing well!

    Kathleen (katgrl2563@aol.com)

  8. Shelly January 8, 2012 at 6:13 am #

    Hi Kathleen,
    Thanks for your positive encouraging post. That’s pretty much my recipe as well. I’m 43, diagnosed at 15-symptoms as far back as I can remember and have been med. free-not exactly by choice since July-after an allergic reaction to Humira(which I have a few of the bazillion dollar med. sitting in my fridge as a reminder not to go on any more meds unless absolutely necessary!). I have been doing something close to SCD for over a year and a half. I have been thru all the meds. and am either allergic or intolerant to-including prednisone.
    It sounds like we keep pretty similar lists of do’s and don’ts so I was glad to read your positive post and see all the responses/questions. Do you follow SCD? I just follow something close. I use the prescription strength VSL#3DS and Lovaza for Omegas. I only occasionally add Flax. I just got some bleeding under control so I don’t like to make changes. I was also wondering if you’ve tried aloe, glutamine and/or boswellia? They are on my list to add if I need to. I’ve read a lot about people using them for UC. Right now I just am more careful with diet(I think the processed stuff with things you can’t pronounce is one of the biggest culprits) and increase the VSL to 2 Sachets(1800 billion bacteria total), and have a super-power smoothie pretty much every day(posted on the coco smoothie with Adam. I don’t drink alcohol-just makes me tired anyway! and I don’t eat out and am very careful at friend’s and families’ houses and watch food prep. like an eagle! When in doubt-I don’t eat it. Easy to decline and not hurt feelings to just blame the UC!! See there is a positive to UC. Oh, I walk on my treadmill every day (except for a bulging/compressed disc slowing me down a bit)! It is exercise and my de-stressor.

    I appreciate you posting and sharing your story and am looking forward to your comments back. Thanks and happy healthy New Year…Shelly

    • Kathleen January 9, 2012 at 8:54 pm #

      Hey Shelly,
      Yup, sounds like we both have very similar approaches. So sorry that you have had to deal with UC for so long (I thought 15 years was along time!) I’d bet that your allergic reactions was your body telling you it’s had enough of the meds. How have you been doing since going off them?
      I don’t follow the SCD diet but do abide by most of the same principles ( i.e limit sugar, no processed foods, no starchy food/white bread).
      I have tried the aloe gel and use it in smoothies if I feel a flare coming on. I really think it helps.
      I have not tried glutamine or boswellia. I haven’t tried VSL either but have made a note to try these for any future flare ups.
      I do drink wine occasionally but never during a flare or possible flare.
      That’s great that you walk on your treadmill daily! I try to stay active as well and go for jogs about 3 times a week.

      Thanks for sharing your experience as well, we can all learn from each other and it’s always reassuring to know that we are not alone in our struggles and triumphs in dealing with UC.

      Happy and healthy new year to you too! ….. and best wishes for a med-free and flare-free 2012 and beyond!!!
      Kathleen

  9. Shelly in Maine January 12, 2012 at 4:31 pm #

    Hi Kathleen,
    Thanks for your response. Sorry so long to get back. I hope you keep posting whether you make any changes and/or hopefully status quo! I appreciate sharing with someone who has more similarities. Adam actually originally did the diet survey so I could see if anyone was in the same/similar boat…kind of the gray area. I too can still eat bread/wheat-but limit it and mostly try to keep things gluten free. I do have cereal everyday with skim milk and my power smoothie at lunch.(discussed under Adam’s Coco Colitis discussion!)
    Anyway, hanging in there and hoping to stay med. free. Waiting for some real snow so I can cross country ski this year. (I’m lucky to live on a lake so I can do outdoor things and fun summer things like kayaking, etc.when I’m healthy enough.)
    Anyway, keep me/us posted. Good Health, Shelly(had to change my post name since there is another Shelly!)

  10. Donna R July 31, 2012 at 10:38 am #

    It’s so great to run across your site and get some confirmation of what I was hoping was the reason for my not having had any significant UC flare for going on 3 years. I finally realized that two of my biggest triggers were stress and antibiotics. I have been working on stress management, and taking the anti-depressant Wellbutrin seems to have calmed things down significantly, with brain-gut axis research pointing to a specific plausible mechanism for this response. Antibiotics have a clear relationship to initiating a flare for me, and I have asked my doctors to do whatever is possible to avoid a course of antibiotics, or to not use full-spectrum antibiotics at least which wipe out more strains of gut flora. For some conditions, research shows it is even possible to get benefit from taking a single dose of an antibiotic rather than a full course, so this is an option to research and ask your doctor about. These two changes appear to have made a significant difference. I went on a strict food elimination diet with blood testing and discovered that while I had a number of food sensitivities, they did not play as critical a role in triggering a flare as did acute anxiety, chronic stress, and antibiotics. When I have had unavoidable stress and can feel a flare starting, I have had good success with nipping it in the bud by using a protocol developed at the Cleveland Clinic which combines of high-dose fish oil, soluble fiber, and antioxidants which was found to be safer and causes fewer side effects than many UC drugs–patients needed significantly less corticosteroids to attain remission when using this combination. I also usually add VSL-3 antibiotics, if I can afford them, or start taking mega doses of another high quality probiotic. I also found research touting blueberry fiber as being especially effective. I have migraines and would often take Excedrin Migraine before resorting to stronger meds, thinking a small dose of ibuprofen here and there might not hurt, but I have observed otherwise once I decided to pay attention, so now I davoid NSAIDs at all costs. For those who need NSAID-type relief from joint inflammation or uterine cramping, you might want to look into 5-Loxin, a potent boswellic acid. I have become extremely interested in the antioxidant and amino acid N-acetylcysteine (NAC)which I have just started taking because has been found to be highly promising for UC and a host of other ills that are related to glutathione depletion. What I find especially interesting about NAC is its potent psychiatric benefits for a number of biologically-based nervous disorders, and this brings to mind the role of the so-called brain-gut axis which may be critical in understanding the true nature and eventual cure of inflammatory bowel diseases. I think sharing experiences and knowledge like this is such a wonderful service to humanity, and I am grateful to those like Kathleen who take the time and devote the energy to sharing of their hard-won wisdom, as well as those who help further the discussion. Thanks, everyone!

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