Active 37 Year Old Female – Newly Diagnosed and Ready to Get on With It

Introduction to Caroline:

I’m 37, married, and love to eat, laugh, workout, and hang with my hubby and our pets! I never get sick and so this whole thing has really thrown me for a loop. I am looking forward to feeling better soon.

Some more about me:

I love anything fitness related – CrossFit, yoga, running, dancing. I have always loved food and that has been one of the hardest things about this thing for me – I am looking forward to being able to enjoy my meals again without sprinting to the restroom. I am married to an amazing man – we have a houseful of rescue animals.

Current Colitis Symptoms:

Constant bloody diarrhea, tenesmus (I am so sorry I have had to learn what that is), fevers, not able to get any sleep due to getting up every 45 minutes. This little situation I have cooked up has also blessed me with some lovely hemorrhoids.

37 Years Old and Just Diagnosed

So, my stomach has always been fussy. If I get nervous, if I eat something weird, if I get stressed out, life changes – all of those things have always caused me a little distress and at this point, I am used to it. At the end of last summer, things got a little weird – usually I tend towards D if anything, but I kind of felt constipated and crampy. I also was passing a little blood and mucus. About 10 years ago I was diagnosed with internal hemorrhoids, so I figured that was it and it would clear up with a little better attention to my diet. By the way, I have been on the Paleo diet for the past year – probably about 80-20. I do so much better without grains, dairy and sugar, but every once in a while would enjoy a little something. Or a little glass of wine. :) I changed jobs and also figured maybe that was part of it too. The pain and cramping got worst, and so in December I saw my primary care doc. She figured I was constipated too, and pu t me on a regime of fiber, stool softeners, and hydrocortisone suppositories in case there were internal hemorrhoids. Well, this did nothing – but I still wasn’t that motivated to do much about it.

The weekend before Christmas, we were leaving to go visit my family about an hour away, and I was in so much pain that morning I almost couldn’t stand. I couldn’t go 10 minutes without having diarrhea, and it was bloody. I knew at that point something was really wrong, so that Monday I made an appointment with a GI doc. It wasn’t until after New Years, so I spent my holidays in the bathroom. My appetite disappeared and I started losing weight rapidly (I am 5’1, usually 114 pounds, and currently am 101). I was shocked when the doctor told me after talking to me for 5 minutes that I had UC. I actually got kind of pissed and was like, well, I think it’s just a hemorrhoid. He pretty much laughed at me and sent me off with a colonoscopy appointment and a prescription for Canasa. Which, I’m sure is a lovely medication if I could keep it in. When I got home, I read the UC packet he gave me and started crying because I KNEW I had it and he was right. Al l I could think about was how I would look with a bag. Exercise is my therapy and I haven’t been able to do it in a month, so that isn’t helping. My hubby read over the info and brought me back to earth -he has been a lifesaver. I found this site at that point and it’s been really helpful. I am also so thankful that my manager is letting me work from home – being at home is so much more comfortable to me. I get so worried and irritated when I go into the restroom at work and there are people in there brushing their teeth. OMG, GET OUT!! :)

So, my colonoscopy was this morning. My heart rate was super high, which I attributed to nerves, and I was running a fever of 101. The nurses were a little concerned I might have the flu, but my doc says I am so inflamed it’s becoming systemic. The procedure was a snap and he came back in to show me pictures. I had convinced myself it was just going to be rectal, but again I was wrong. It showed severe ulceration throughout, unfortunately. He put me on Cipro and Flagyl just to take care of any lurking bacterial issues, and started me on Prednisone – 40mg a day this week, then step down by 5 each week. I am nervous about side effects but hopefully 2 months won’t be too bad. I am glad everyone says you feel better so quickly – I am really ready for that. We go on vacation in a few weeks and I am hoping to be more fit to travel. I am determined to stay strict on diet to prevent this from happening again.

I love the stories here that give me hope – my mind is a scary, fearful place to be these days and I think the more I can stay positive the better! Any words of wisdom are welcomed – thank you to Adam for creating this site!

Colitis Medications:

Canasa – the nights I can keep it in it seems to help, but those are few and far between!
Prednisone – just started.

I have also tried acupuncture (which definitely has calmed down things for a day or so after, plus it just feels good). I also met with a naturopath last week who believes that my lifelong “fussy stomach” is actually leaky gut. Which seems so weird to me since I have been Paleo for a year, but it does make sense. He has me on a diet very similar to SCD and I am taking a gut repair supplement calle Repairvite, as well as a probiotic. Crossing my fingers – I am not a big western medicine girl but think this Prednisone is necessary.

written by Caroline

submitted in the colitis venting area




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14 Responses to Active 37 Year Old Female – Newly Diagnosed and Ready to Get on With It

  1. Caroline
    Caroline February 16, 2013 at 5:03 am #

    Hi everyone – it’s Caroline. :) Just as an update to the above – I am feeling a lot better! Not sure how much is the diet (it’s morphed more into a Paleo Autoimmune Protocol – same as strict Paleo minus eggs and nuts), vs the probiotics/glutamine/Repairvite/Vit D/fish oil, vs. the Prednisone.

    I have been lucky that I haven’t had any real side effects from the Prednisone and have been feeling good. I think the diet and managing my blood sugar may be the reason. I am only going about 3x a day, and this week started having solid ones for the first time in months – SO exciting and I am so afraid they will change…haha. No blood but still have mucus blobs – ugh! Go away already.

    My GI doc randomly called in a prescription for Asacol without discussing it with me, which I am not really interested in adding to the mix. I am feeling better and healing and want to get away from meds, not more of them. So I have an appt with a new GI next week that communicates more and hopefully will work with someone who wants to control this thing long term with diet and lifestyle changes. I hear good things about him so we will see.

    Besides getting a little frustrated and bored with eating meat, veggies, and some fruit, I am trying to find new recipes that will keep me enjoying eating. I am sticking to the diet 100% (with the exception of a little wine on vacation, which thankfully did not cause issues). The Paleo Mom website has great autoimmune Paleo info and recipes! I am also taking lots of yoga to bring better balance to my other, more aggressive and possibly inflammatory exercise.

    Which brings me to a question – I have read how exercise can decrease inflammation, but also increase it as well if it’s too vigorous, often, or if you don’t recover properly. I am wondering if my working out heavily (5-6X/week high intensity interval training, weights) could have contributed to this. My naturopath feels that it was part of a “perfect storm” – I would like to hear other’s thoughts and experiences.

    • j February 16, 2013 at 2:21 pm #

      Hi,

      Being diagnosed with a chronic illness is very upsetting. I have had UC for close to 40 years and I hope you will trust my observations. Imagine that you were diagnosed with diabetes which is also a lifelong chronic illness. You’d take the medicines your doctor recommended, wouldn’t you?

      Asacol is a safe drug for most patients and is clinically proven to be safer long term then steroids (Prednisone). It is used to not only quiet a flare of colitis but also to promote long term remission.

      I do understand how difficult it is to face this diagnoses. Hang in there. You are not alone and there is so much promising research that will help all of us with UC find relief. The nature of this disease is that there are periods of remission and then out of the blue,periods of flares. It is confounding because we all want to have a little more control of our health.

      I hope things continue to improve for you.

      • Caroline
        Caroline February 16, 2013 at 2:50 pm #

        Hi J,

        Thank you so much for your thoughtful response and well-wishes! It is so nice to not be alone in this, especially with people like you that have been through it for years – even though it’s not a club we were all particularly excited to join, haha. I would like to talk to the new GI doctor and get more information about Asacol before taking it – so if after that conversation it makes sense to take it, I will. I just don’t want to take it without having my questions answered so I have a better idea of what I am taking. In the meantime, I am enjoying every day of this near-remission and hoping it holds up! UC does make the good days a lot sweeter, that’s for sure. :)

        Caroline

  2. Ellen February 16, 2013 at 9:22 pm #

    Hi Caroline:
    I am sorry that you had to spend so much time in your bathroom during holidays.
    I understand how you felt that I was diagnosed 1 yr ago, and 5 months later taking Asacol I had sever flare and had to be hospitalized for 3 months during last summer and experienced the first time in my life that I could not eat 1 whole month and had to be fed via IV because anything I ate inflamed my colon (horrible feeling that you cannot eat anything even when you are hungry.) I lost so much weight (like 10 kg in 1 month time), and becase I am not married or anything, it really affects my work and the life in general. I think you are in much better situation that you have a wonderful husband to cry on the shoulder, where some people dont have that at all. I am thinking about operations to get rid of this disease. After what I went through, I dont want to experience hospitalization, takng dangerous drugs and I am strong enough after doing research that I am gonna just have to swallow the fact that I have UC, single and I just might have to get myself out there for dating guys with a Stoma, which would be tough but not impossible.

    Regarding Asacol, it is the safest medicine among all the other ones for UC. Asacol is the same as Pentasa but its a coated version and it meant to be activated in the large intestine. Only thing you should keep in mind that when you are having diarhea, it just comes out with your watery stool not being that effective. Next to Asacol, Pentasa, Sulfasalazine pill forms…but they have enema form as well. Steroids are dangerous and meant to be used only for the short term, due to its huge side effects and you have to follow your doctor to decrease the dose gradually (otherwise you can die by suddenly stopping the intake of steroids, please follow your doctor’s advice.)
    I dont think you should be that worried about Asacol. You should be worried when your doctor wants to put you on immuno suppresant, 6MP (like chemo), and Remicade (this is very dangerous but if you want to keep a colon you may not have a choice, allergic reaction can be controlled usually by a doctor who knows what he/she is doing)

    I guess my point is that your medicine Asacol is pretty safe, and there are a lot more medicine in the scale that are much more dangerous. You situation is much better that you have someone to take care of you, and you have emotional support, where some people dont.

    I also wanted to share that I have experienced a tough/stressful job, or divorce, or big event in ones life can be a trigger for developing UC. For me, it was a job. Another lady who had to have a surgery to remove a colon and temporary illoestomy, it was the divorce… I know someone who also developed a big flare (she was a nurse…), due to stressful situation at work for a extended period of time with little sleep.

    The life is filled with stress, and as much as I think the body is important, I cannot avoid stress and everytime I get stressed out and if my stomach is flaring, I cannot keep a job with being hospitalized all the time, so I am seriously considering a surgery (also I am on an immuno suppressant and I dont want to take remicade or any more dangerous drugs), and if j-pouch fails I am ok with a permanent illeostomy if I can keep a job and a happy life without a dangerous drugs. I just want to move on, working full-time, traveling, eating food I want, socializing with friends, get my masters…etc. For me, life is too short to be controlled by a chronic illness.

    • Caroline
      Caroline February 17, 2013 at 9:01 am #

      Thanks, Ellen – I am so sorry that you have such a rough go of it on your own! You sound like a very tough cookie – I hope you get to feeling better soon. I agree with you wholeheartedly that stress plays into UC – despite what my doctor said! I know that Asacol is on the lower end of the scale as far as risky drugs go, but just want to have my questions answered before I take it. I definitely do not have plans on being on Prednisone longer than I have to – I’m being tapered down 5 mg a week and only have one month to go! I pray that we are all able to find what works for each of us so we can live our lives the way we want – you are so right that life is all too short!

  3. Ellen February 16, 2013 at 9:29 pm #

    Caroline, regarding the maintenance medication Asacol and other relatively safer drugs, they can keep you away from developing cancer.

  4. bev February 17, 2013 at 8:48 am #

    Hi Caroline,

    I was diagnosed at the same age as you. That was 15 years ago. I too am an avid exerciser…almost 35 years now…and even when I was flaring, never missed doing it! I swear it kept me sane and not depressed. (I believe that if everyone got some exercise every day, nobody would be on antidepressants!)

    I am not a believer in the meds like others who have replied to your post. Quite the opposite, actually. I was on asacol for almost 14 years straight and did not even realize that it was causing me a myriad of health issues. The nausea, cramping, bleeding, hair loss, acne, aching bones and joints were all attributed to the UC itself by my good old doctor. I NEEDED to remain on this maintenance drug forever, apparently, no two ways about it. It would help fight against colon cancer too, apparently. Well, now, I call bull*** on that. As soon as I decided to take my health into muy own hands, I got better…I started a good probiotic, and started feeling so good, that I discontinued the meds on my own, as my doctor would never have advocated that! I added L-glutamine and a couple of natural anti inflammatories to the mix (vitamin D and astaxanthin to be exact) and I have never looked back. One full year now, in remission for the first time in all of those years, with NO MEDS. No more awful side effects…just feeling good and normal again! I had forgotten what that felt like actually…

    Anyway, I am not telling you or anyone else not to take meds or not to listen to their doctors…just merely to question everything! What will the meds do to me? Are they worth taking at all? How will they affect me? What may the long term side effects be? Will they stop working? (The answer to that is yes, unfortunately, they do all seem to eventually stop working for some reason). This condition needs to be managed by us….we all seem to need to find out what works for us. For example, I can eat almost anything, but I know that I have to avoid too much wheat at one time…otherwise, bleeding occurs. Trial and error…

    Welcome to the site…you will get alot of tips and advice, some of it conflicting…weed out the crap…you will learn how to do it!

    Cheers,
    Bev
    :)

    • Caroline
      Caroline February 17, 2013 at 9:08 am #

      Bev,

      Thank you so much for commenting – I love your story and always see your comments about your success in treating your UC effectively with the probiotics and supplements. So inspiring – I hope that things go that way for me! I take my probiotics, Vitamin D and L-Glutamine every day too. :)

      I have an aunt with UC that had a similar experience to yours with Asacol – she was going to have to be on it forever and felt that it was causing more issues for her. 9 years ago she decided to stop taking it against her doctor’s advice and manages her condition with probiotics/supplements, stress management, and diet. I am hoping that runs in the family -haha. I do truly believe that a leaky gut is at the root of all of these issues for me, and am working closely with a naturopath to try to fix the root of the problem. This first flare was so intense and I do believe that the Prednisone was necessary to jump me out of it, but am really hoping that making significant diet and lifestyle changes along with the correct probiotics and supplements will heal me long term.

      • bev February 17, 2013 at 10:16 am #

        I hope that it works for you too Caroline! Oh how I hope…I wish everyone with UC could find that natural ‘thing’ that helps them. Whether it’s diet, probiotics, a supplement…whatever…I’m so thankful that I did…I’d still be feeling absolutely horrible if I were still on the meds…it was a terriblw way to live every day…I do not want to go back to that place, you know?!

        Cheers
        :)

  5. shelly in maine February 17, 2013 at 9:39 am #

    Hi Caroline,
    I think the path you are choosing is well worth taking. You always have meds if you need them as perhaps a boost or backup. I think the naturopath is a great route. Dede Cummings wrote a great book in with her doctors including her naturopath….Living with Crohn’s&Colitis…i highy recommend it. You can Google her. She also comments on this site and has her own. She is a wealth of knowledge.
    I hope you are off all those antibiotics…they deplete ALL your bacteria, good and bad….so the probiotics are an extra MUST…and to piggyback on what Bev said..I wanted her to write first! Keep up the exercise just note if the too vigorous types aggravate symptoms sometimes and modify…just like diet! Keep a journal to help you track everything!
    Good health,Shelly

    • Caroline
      Caroline February 17, 2013 at 10:41 am #

      Hi Shelly,
      Thank you so much for the encouragement – I agree meds can be a good backup or boost! I will definitely check out Dede’s book – I appreciate the recommendation. I have really liked working with my naturopath so far and getting his take on things – I wish I had met with him earlier but who knew this was going to happen, right?

      Yes, thankfully I am off of the antibiotics! I felt so much better once I stopped those – they are no joke. I am enjoying getting back into exercising but am just having to be way more patient with myself and modifying a lot. Less intensity, more yoga for now seems to be the best thing for me right now. :)

      Thanks again!
      Caroline

      • shelly in maine February 17, 2013 at 12:37 pm #

        You’re Welcome…you have a great running start so to speak. You can only do what you can do…that’s why I love my treadmill at home complete with my own bathroom!! :-) Also, the SCD Breaking the Vicious Cycle book is good…helps to make more sense of the science behind SCD and paleo. The supporting websites are good, but incomplete.
        Hang in there. Knowledge is power. Keep researching…everyone’s UC/treatment is a bit different and you’ll have to find what works for you….which can also vary.
        Best, Shelly

      • shelly in maine February 18, 2013 at 5:02 am #

        Hi Caroline…just wanted to add the obvious of Adam’s book which comes with a great cookbook as well. Another great thing about Adam’s book, if you haven’t read it already, is that it is great for others to read and helps explain what you are goung through.
        There are a few good sites which also have some good recipes like -comfybelly which is for multiple diets.
        Hope things are going alright.
        Best and good health, Shelly

        • Caroline
          Caroline February 18, 2013 at 4:47 pm #

          Thank you so much for the recommendations – I will take you up on them! Comfybelly looks awesome and I had not heard of that one. I will have to check out Adam’s books as well!

          Hope you had a great day!
          Caroline

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