Ulcerative Colitis Tips


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New to all this – S.O.S.!!

this is me in the middle, my dad and my daughter, taken about a year and a half ago.

this is me in the middle, my dad and my daughter, taken about a year and a half ago.

Introduction:

I’m a 51 year old New Yorker, with a background in theatre, but who works in finance, not a job I love but a realistic way to pay bills! Living in New York with a husband and child is not cheap… I have a 4 year old daughter that I conceived via fertility treatments and donor egg, so I’m holding up my end of the bell curve on motherhood. I like to think I’m doing a public service, making all those 40-year-old moms feel young! My husband has his own acting studio, so I stay connected through him to theatre.

Some more about me:

I am an extrovert, love to travel, and love my friends who are all way too scattered around the globe! I love to learn languages, love to read. I am a yoga lover, struggling to find time to practice. I spent years screenwriting and sculpting. I make my sculptures from found material – I love recycling junk into art. I’ve gotten better and better at screenwriting but have not sold or gained representation – a very difficult art. But at present I no longer have time for either of these… I’m searching for a way to keep my artistic spirit active – very difficult with full time work and a child! Can anyone relate to ‘losing yourself’ while your children are young? That’s me. Happily, raising a child is simply amazing.

Symptoms:

Now that I’ve started the Paleo immune protocol and a host of supplements like probiotics, etc., I no longer have the round, hard rabbit poops, and the many bloody mucous emissions. But my non-daily bowel movements, and mucous (sometimes bloody, sometimes not) are my main symptoms.

New to all this – S.O.S.!!

I just got diagnosed after my first colonoscopy because I turned 50, but also because I recently developed constipation, and some bloody mucous discharge. Additionally, within the last 3 years I have cut out alcohol (due to abuse), grains, oats and most diary (due to exhaustion responses which I took to be gluten/avenin/casein intolerance) and sugar (inconsistently, I admit). I’ve also had a foot fungus for several years which I have been sort-of keeping at bay with antifungal topical cremes.

Now that I’m reading about UC in depth, I see how all these things connect. And I see how I need to connect to an online community, because I am a bit overwhelmed with all the info, especially the conflicting info from the medical establishment vs. people who say I can live med free. I haven’t started taking any meds, I am trying diet first, doing the paleo immune protocol right now. But my questions are:

(1) For diet, do people recommend Paleo immune or SCD?
(2) My doctor says even if I’m symptom free without meds I can still have UC and be at risk for colon cancer. This would point to incorporating both diet changes AND meds (which I have seen recommended on some sites)- Does anyone have thoughts about this?
(3) Has anyone had the foot fungus I described that won’t go away, and does it disappear with the SCD diet?
(4) How long does it take to see a link between eating something bad and -let’s say- a bloody mucous? That day? Days? In other words, how do I know if there’s a connection?
(5) My symptoms started after I had my daughter, which involved a lot of fertility treatments, a donor egg and a c-section. Could these have contributed to the changes in my gut?

Medications I’m Taking/Taken:

I have been prescribed melsalamine, but haven’t started taking it. I don’t want to, but I also don’t want to risk colon cancer. Hoping this community can help me sort through all this.

written by Esther G

Submitted in the colitis venting area




13 Responses to New to all this – S.O.S.!!

  1. Adam
    Adam October 22, 2013 at 10:57 am #

    Thanks for being a part of the site, and thanks for sharing your story.

    As for Paleo diet, that’s a great diet, lots of people have had success with that. I myself follow the SCD diet and most of the people on this site who treat their UC with diet do the same (But not all). So, if you’re having success, GREAT!! Can’t beat success sometimes right.

    Your doctor’s response is common. My thoughts are: if you’re having success with diet great, if success comes with meds..great…if you feel better doing both…great. It all just depends on the individual. Drugs didn’t help me a bit (the maintenance ones) so I am solely doing the diet thing with success. Everyone’s a bit different.

    Haven’t heard talk about the foot fungus you referenced, probably hard to know if its related or not. I hope that clears up for you.

    Eating something bad and “seeing symptoms come back”…Sometimes days, sometimes hours. It’s always going to be different for each person here, and really hard to know FOR SURE.

    After having your daughter…were you prescribed any antibiotics? If so, maybe a relation… Also, I’d be interested if you had any family history (not always easy to determine)

    Best of luck no matter how you decide to move forward, and thanks again for sharing.

    -Adam

    • Esther G
      Esther October 22, 2013 at 6:16 pm #

      Hi Adam:
      Thank you for your response. So many Q’s….

      – what are main differences between Paleo AI and SCD? a few foods, or a major philosophical difference? (I will research, just wonder if there’s a simple answer.)
      – did you do any follow up tests to check if your inflammation was gone? Thinking about Don’s post, below.
      – foot fungus is GONE. i think it was the sugar. AMAZING.
      – i’ve had numerous antibiotics in my life, but can’t recall after having my daughter. My brother has proctitis as well, however he’s a doctor who is loyal to Western meds, takes his drugs without question. I can’t really discuss alternate approaches with him – he isn’t open to it.
      thanks for any thoughts!
      Esther

      • Adam
        Adam October 22, 2013 at 6:44 pm #

        Esther,

        Do some research on the differneces and let us know what you find. i’m for sure not an expert there (but dairy is a big difference)

        folow up tests I’ve done about a year ago, had a scope, which is documented here on the site in a video: http://www.ihaveuc.com/colonoscopy-results-video-how-is-the-colon-really-doing/

        Probably not worth getting into it with your bro, to each their own right…:)

        take care, and best to you,

        Adam

  2. Don
    Don October 22, 2013 at 12:00 pm #

    Hi Esther! I know how hard it can be to maintain your creativity while raising a family. I scaled my music dreams way back but always had an acoustic guitar handy and would play and write songs when I could. Having UC doesn’t help that’s for sure. Most of my time over the last 5 years has been spent on this condition, cooking, shopping, searching the internet, and quality time on the toilet. It’s very exhausting to say the least! I would like to answer your second question. For myself, even though my symptoms were gone I still had inflammation. That inflammation is not good and my GI doctor told me that if left untreated will almost always lead to cancer. I was on the SCD for many years but the inflammation was still present even though I was controlling my symptoms. I know this because I flared after going off the diet and eating only a few things that I should not have. I had a colonoscopy shortly after and the doctor told me that the inflammation was worse than before I started the diet. He said it was there even though the symptoms were not. I believe it too. It’s necessary to get the colon healed and I am not sure that diet alone can accomplish this. It didn’t for me but we are all different and I think it does work for some people. It takes time and patience to find what works for you. I recently did home fecal transplants and am hoping that will cure me. Time will tell. Good luck and I know you find lots of help here.
    Don

    • Esther G
      Esther October 22, 2013 at 6:03 pm #

      Thanks Don, I really appreciate your info. A few follow up questions then:

      – Are there people who do heal and eliminate inflammation with diet/lifestyle changes alone?
      – How do I follow up, having just had the colonoscopy – can I request another colonoscopy once I’m asymptomatic to see if the inflammation is gone?

      Just starting ViciousCycle, so maybe this is all in there…

      • Don
        Don October 23, 2013 at 9:26 am #

        I am not sure if you can totally eliminate the inflammation with diet. My experience was that the symptoms were lessened to the point where I thought I was cured but the inflammation was still there, just under the surface. You can always request a colonoscopy but the prep can be hard on you. It will take time for you to heal no matter how you treat this. The diet did work very well for me at first when nothing else did. I hope you get better soon. Take care,
        Don

  3. Caroline
    Caroline October 22, 2013 at 4:00 pm #

    Hi Esther!

    Thank you for sharing your story – I actually started with the Paleo AI protocol earlier this year when I was diagnosed. Over time, I was able to add some things in and became more traditional paleo, but now it’s morphing into SCD. I realized that some of the things that set me off were technically Paleo, but forbidden on SCD (plantains, sweet potatoes, dark chocolate). I think that if you are controlling your symptoms with diet, there is a constant moving target as your body will have ups and downs as it heals. One thing that has been helpful to me is keeping a food diary – I can usually recognize my patterns over time and adjust accordingly! It can be tricky to know what causes what – for me, my morning results are a direct reaction to the previous day. I have heard for some people it’s a little more delayed, but you will get a feel for what your body is trying to tell you.

    As far as the daily mucus goes – I still have it and am “technically” in remission. I do not have other symptoms and am continuing to feel better (lessening frequency and urgency). If I eat something I shouldn’t, the mucus might have a tinge of blood in it – but it’s nothing that I freak out over. I used to obsess about when it would go away but honestly, if this is as good as it gets I can work with that!

    I control my UC with a combination of diet, meds (Apriso) and VSL. I would like to wean off of the Apriso in the next year but my doc wants to scope me first. Eek – yeah, I’ll take the Apriso a bit longer, I think.:)

    Good luck and keep us posted!
    Caroline

  4. Esther G
    Esther October 22, 2013 at 5:59 pm #

    Hi Caroline:
    Thanks for your answer. Dumb question – what is VSL?
    Esther

    • Caroline
      Caroline October 23, 2013 at 6:17 am #

      No dumb questions, ever! VSL is a probiotic that is by prescription from your doctor (which also means your insurance may help cover it). It has been created for those with UC and pouchitis, and there are some studies that show it is helpful. It is NOT SCD compliant but I could tell a huge positive difference when I started taking it, so I have continued. There are many SCD-friendly probiotics – again, this is one where you may have to try a few to get the results you want.

  5. bev October 26, 2013 at 8:35 am #

    My question is…why will meds help to avert colon cancer??? I hear doctors say this all the time…but why will taking medication stave off cancer???

    I don’t believe it for a single minute…money in their pockets, that’s all…

    • Adam
      Adam October 26, 2013 at 8:46 am #

      Bev,
      I totally hear you. I’ve had this debate with my GI before as well (and I’m one of those who thinks their GI is “the best” (like some others right:))

      You know my stance on medications so no need to get into that, but my theory is that if you take a thousand UC patients who are taking medications to treat their UC, and follow them through their life to see who ends up with colon cancer (which is by no means rare with the general population as well mind you), and you take 1000 patients who are doing absolutely nothing to treat their UC…well yeah, I think its probably going to conclude that people using medication to treat their UC/maintain remission etc… will have a lower rate of colon cancer. Reason being, for some people, medications do help control UC, not everybody, but for some. And by helping to control UC with medications, the idea is that longterm inflammation is less, which leads science to conclude that the potential for cancer will/should be less as well….

      I hope you’re not rolling your eyes at me thinking, “WTF Adam”…but believe me, I’ve spent many an hours thinking/wondering and reading studies that state just what you mentioned. And I’ve tried to wrap my head around how this is actually possible. I think an even better study would be to determine if people treating with diet/probiotics/shaking lambs tails twice in the morning and evening yada yada…which large group of treaters of UC have the lowest rate of colon cancer??? That would be some good info to know. I just don’t suspect we’ll see that anytime soon, and if its not in favor of drug companies…I don’t suspect doctors will be privy to that type of info either (unless someone like you or me or anybody else who’s concerned with the overall picture busts it out at them:)

      best to you,
      Adam

      • bev October 26, 2013 at 3:49 pm #

        Yes…inflammation. Exactly, Adam. Some of us do need ‘help’ from meds getting the inflammation under control, because, like you said, inflammation is the cancer antagonist in UC.

        For those who can control and get their UC into remission naturally, then, I say, no meds necessary to avert colon cancer…but for those who cannot do it the natural way, then I see your point my friend!

        Roll my eyes at anything you say?? Never! You the man, Adam. The best :)

  6. bev October 26, 2013 at 8:39 am #

    Continuing with my ‘cancer’ risk thoughts…if there is no inflammation, and the colon is ‘healed’, then why is the risk of cancer any greater for UCers than for the general population?

    I think it’s a lot of malarkey…

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