Ulcerative Colitis Tips


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“I Have What?”

Introduction:

My name is Kristine. I’m an average 30 year old new mom and wife. I live in Milton Ontario Canada. I enjoy camping, running, working out, hiking, snowboarding, mountain biking and simply being around people I love. I have just given birth two weeks ago to my first child-healthy baby boy.
I was diagnosed 4 days ago with ulcerative colitis-not what I was expecting after having a baby!

My Colitis Symptoms:

I have terrible diarrhea, blood that was filling the toilet and gas that makes even the grossest public bathroom seem to smell clean. I experience cramps that would make Chuck Norris double over and back pain that seems to linger forever. I was becoming extremely tired and looked like hell. I lost 30 pounds in about 12 days which is awesome because I just had a baby, but not so awesome because it was not in a healthy way-crapping out all your food almost as soon as it hits your stomach is not a great way to lose the baby weight. I had no appetite and I was beginning to feel afraid to eat because of what was coming out of the other end.

My Story:

I have just given birth to my beautiful baby boy about two weeks ago. 3 days after, I started experiencing bouts of diarrhea, cramping and some blood. I mentioned this to my family doc at my post delivery visit but she said it was normal after having a baby since your body is going though so many changes. Ok, I’ll take her word for it. A couple days go by and the pooing is getting more frequent, painful and bloody.

I mean I was starting to fill the toilet with blood.

Not to mention going poo anywhere from 10-30+ times a day. I really started to worry so I made another appointment to see my family doc. I explained everything to her-again, I was told it was likely hemorrhoids and to use some over the counter product to get it under control. Another couple days go by and now I’m in serious pain, pooing almost uncontrollably, bleeding like crazy and scared as hell! I saw her again and this time I was crying and freaking out about the amount of blood and visits to the toilet I was making in a day. I told her no way is this normal or is it hemorrhoids! She decided to take a peek at my backside-she instantly stood straight up and said “go to the ER right now”. This really freaked me out. So I called my husband at work, he came right home and took me to the hospital. 2 hours after being in the hospital, I was told I would be having a series of Xrays done to get a better idea of what was happening inside my body. Once the results were in, I was told my entire bowel looked inflamed and need to have a colonoscopy done asap.

My head was spinning! I couldn’t believe this was happening. I just wanted to be at home with my husband and baby. Anyway, I was admitted to the hospital for the night, started an awful treatment of laxitives to clean me out (funny enough I thought I was cleaned out from all the pooing). Bright and early the next day I had the colonoscopy. I was so nervous about what was going to be found. Soon after, the GI doctor came to visit me and told me I had UC and 100% of my bowel was severely infected. I was shocked but relieved at the same time that they knew what was happening to my body. I’ve spent the last 4 days in the hospital recovering and started taking the medication to help ease the pain, swelling and bleeding. It’s been a roller coaster these last few days. I think I’m more upset being away from my husband and new born than finding out I have this nasty disease.

I’m happy I have found this web site-it’s made me feel not so alone and scared. It’s comforting to know that there are so many other people who live with this disease and are living fairly normal lives, doing things they’ve always loved doing. I’ve been doing a lot of reading and research the last few days, and to me it seems like a lot of success is being on a good diet, staying stress free and most importantly thinking positive. I’m going t o have to work on the staying positive, but I know once I start to get a handle on this, it will get better.

I’m afraid to go off the steroids and flare up again. I really hope my insides get better with diet before I’m off them.

Where I’d like to be in 1 year:

Hopefully in remission and living somewhat of a normal life with UC. Not afraid of having some kind of embarrassing accident and not always planning the closest route to a bathroom. I hope I can manage UC mainly with diet and not have to rely on drugs (although they seem to be helping me out at the moment). I want to be a positive roll model for my son, and be strong for him.

Colitis Medications:

40 mg/day prednisone (will be tapering for the next 2-3 months)
mesalamine (not sure of the amount)
Calcium supplement
Vitamin D supplemental
Multi vitamin
Iron

written by Kristine

submitted in the colitis venting area




mom

20 Responses to “I Have What?”

  1. Bev August 10, 2012 at 3:58 pm #

    Hi Kristine,

    Absolutely unbelievable! I’ve heard alot of UC stories on here, but never being diagnosed so soon after giving birth! How traumatic this all must be for you.

    Well, apparently, we are stuck with this disease for life. Hopefully the steroids will give you remission by the time you are off of them. After that, doctors will tell you that you NEED to stay on mesalamine (asacol, lialda) for the rest of your life to maintain the remission. For me, that did not work. They actually kept me bleeding and made me feel generally ill all of the time. I must have been allergic, but was on them for 13 years anyway, because the doctor said that I had to be! Anyway, I decided to take my health into my own hands because I was feeling so terrible on the asacol. I started a 50 billion strain probiotic (available anywhere probiotics are sold) and within two months felt almost 100% better! I’m glad I hung in there taking them and didn’t bail out too soon before they started really working. All of my symptoms disappeared, except for the bleeding. I also weaned myself off of the asacol (I was taking 12 per day!), against my doctor’s wishes. For that whole 13 years, I dutifully took them because I was afraid not to. My doctor scared me into thinking I would die without them, so to speak. I’ve been off them for six months now, and since then, also added L-glutamine (to heal the mucosa of the colon) and astaxanthin (a natural anti inflammatory) and the bleeding is gone now too.

    I am spending about $50 per month now. I was spending $500 per month while I was on the meds! And my doctor told me not to waste my money on natural stuff! I know that we are all frightened when something like this happens to us, and we let our doctors dictate to us and take the reins and the control. It’s normal. We are taught to trust doctors. After all I’ve been through, I’m not so sure anymore. I haven’t been back to my doctor for six months. I used to be there sometimes three or even four times in one month because I was feeling so sick all of the time!

    Just my two cents. I feel normal again. Like there is nothing wrong with me. Like I don’t even have ulcerative colitis. I’m just saying…

    Cheers, and good health,
    Bev:)

    • carmen August 10, 2012 at 5:39 pm #

      Dear Bev,

      I was very impressed with your reply to Christine, especially about the Probiotics.

      I have tried many Probiotics, but have not had positive results.

      Could you please tell the name of the Probiotics you have had success with, and can you purchase them in Australia, where I live.

      Kind regards,

      Carmen Spence

      • Bev August 10, 2012 at 9:59 pm #

        Hi Carmen,

        People always ask me what specific probiotic I take. It is called ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. Having said that, I’m not certain that anyone HAS to take that exact one. I think you have to take a probiotic that has 50 billion strains in it, and taht is recommended for things like UC.

        I doubt the particular one that I take will be available in Australia, although, you never know! If it isn’t, I’m sure that you can find a similar one. It’s important to ask a knowledgable clerk in a vitamin/health store what they would suggest.

        The most important thing is…how long did you try them before you deemed them not to work? I felt good changes within the first week, but nothing really significant for about two months! I almost stopped taking them before that, as well, because I thought they weren’t doing enough. Also, I highly recommend L-glutamine along with a probiotic. Bodybuilders use it to repair their bodies, and what it does for we UCers, is, it heals the mucosa of the colon. It stopped my bleeding. The astaxanthin is a natural anti-inflammatory, and I started that at the same time as the L-glutamine. The probiotic on it’s own did not stop the bleeding. The L-glutamine and / or the astaxanthin did!

        Cheers, and good luck!
        Bev:)

        • Kristine August 16, 2012 at 7:00 pm #

          Hi Bev, it sounds like you decided to take things into your own hands. Its refreshing to hear that there are other more natural options that are working for you. I’m hoping I will be able to live with UC virtually drug free one day. Good luck and keep healthy! :)

  2. KK-SCDer August 10, 2012 at 8:10 pm #

    Kristine,

    I’m so sorry to hear about your diagnosis. I too have UC, and I have had it for 8 years. I really recommend you start the SCD diet ASAP. The meds stop working after a while, I’m sorry to say. Even though all the doctors say that diet has nothing to do with the UC it’s obvious it does. I’ve been on SCD for 3 months now, and although I’m not anywhere near fully healed, I’m loads better than I was 3 months ago. I would recommend this diet even if it doesn’t work for me. They say it takes at least as long for your body to heal as it did to get sick, so it makes sense to start it sooner rather than later.
    Best wishes and good health!

    • Bev August 10, 2012 at 9:50 pm #

      Yes, diet can be important too!

      I agree!

    • Kristine August 16, 2012 at 7:09 pm #

      Thanks for the helpful tip. My husband just bought me 6 books all regarding understanding UC and the SCD. Im nervous as to what is going to happen once i begin tapering off the steroids. I’ve been cutting out heavy carbs, milk products and raw frits/veggies. Im joping to have this diet in full force asap hoping it will help. Thanks again and take care!

  3. Michelle from Arizona
    Michelle August 11, 2012 at 5:05 pm #

    Wow that is a story! To give birth and then be diagnosed with UC is really a doozy! I have been fortunate to have a relatively mild case and have been successful keeping my symptoms under control with a (mostly) SCD diet. Finding out what specific foods cause me problems has been very helpful. I also have started taking a probiotic and I think that is helping. I’m so glad that you discovered this website-there are so many people that have good information and it is great to know that others are out there with this disease. Hang in there and keep posting!

  4. UC Family Boy
    Uc family boy August 13, 2012 at 7:28 am #

    Hey Bev, have you tried VSL#3 or given it a go? It’s got 450 billiion . I was wondering between this and ultimate flora but this is quite pricey for some reason. VSL can be mixed with orange juice or water..
    At the moment I want to give probotics a go prior to my colonoscopy so I can see if it has an impact. I’m in remission – trying kefir, omega3 oils, starting some alea Vera. I want to eventually come off asacol but it is too early as I have just been diagnosed and don’t want to break my initial remission or annoy my (hardly helpful) doctors

    • Bev August 13, 2012 at 4:31 pm #

      Hey back Uc family boy!!

      No, I haven’t tried the much touted VSL. I have thought about it. Is it really expensive? That certainly has WAY more billions in it, doesn’t it? At this point, I don’t care how much probiotics cost…they saved my life!! The asacol cost way more. I think of all the thousands of dollars I spent on it over the years. Ouch. Maybe I should look into that VSL. The 50 billion-er that I am taking seems to be doing the job for now, but more billions can’t hurt, I figure. I believe that we UCers need the strong probiotics. No messing around with the weak ones!

      I understand about being a bit tense about discontinuing meds. I hear that! I took asacol for 13 years. It wasn’t until I got better on my own, that I decided to give them up. They were just doing nothing for me, so I figured, what’s gonna happen if I just stop taking them. Nothing bad did!! Oh how right you are about those hardly helpful doctors…lol. I think that’s the general concensus on this website, isn’t it?!

      Cheers,
      Bev:)

  5. Steve August 13, 2012 at 8:51 am #

    haha. If I had your doctors, I would enjoy annoying them but I would be sure to do so safely, either with the help of a holistic doctor and nutritionist or a traditional doctor who is willing to go off the beaten path…and then, if you do manage to control things, in time, get a scope and be sure to send a copy to your old docs enclosed with a letter showing them what works. :) Just what I would do.

    I can’t speak to VSL#3 but probiotics cannot hurt your situation. The only time I would not take them is if you have to take an antibiotic for any reason. Despite what a doctor might say, they will affect each other and may do some harm. Nothing too serious of course, but when you want to remain in remission it matters. Hope this helps. Steve

  6. Ashley August 13, 2012 at 8:32 pm #

    Kristine– your story is so similar to mine. I am 29 now. I was diagnosed 4 months after my 2nd child but at first was told it was just hemorrhoids or hormones. It took a 3 week fever and a hospital stay to just convince someone to get me in to see a GI. I was so frustrated. Trying to nurse my son, couldn’t eat/drink, losing weight, running fevers…Oh it was bad. But here I am 4 yrs later still making it! I just want to give you a little hope. I was scared (still am some days) but this disease could be so much worse. I Have 2 friends battling some pretty severe cancers right now and at most I have some pain/blood/diarrhea. Yeah, it gets bad sometimes but it is ok! If you decide to go the medication route, there are a ton out there that will help. I was on 4 different ones up until March of this yr. Long story short I got scared of some of the side effects and came off of 2 of them. I am still on the anti-inflammatories but am mostly trying to control this wi my diet. My doctors NEVER told me to start watching what I eat but lo and behold- what I eat, affects my intestines!! Crazy, huh? It took a lot of trial and error (still does) but I HIGHLY encourage you to do some research on the Specific Carbohydrate Diet (SCD). It has made a WORLD of difference in my life! Is it easy to follow? Not always but it is worth it. I am an extremely picky eater and never have liked vegetables. It is taking some learning on my part but I wouldn’t change it for the world! Another thing you might want to look into is low dose naltrexone. It is still a new thing but i am on it and doing pretty well so ar. if you want to talk, please please email me! ashley.atkins516 (the at sign) gmail (dot com). And please excuse the typos. I hate typing on my iPad :)

  7. UC Family Boy
    Uc family boy August 14, 2012 at 1:58 am #

    Hello Bev,

    So I think here in the UK we might have it the other way round- asacol seems to be fairly cheap; I think around £7 ($10) for 180 tablets.
    Ultimate Flora is £29 for 30 capsules ($45) whilst VSL#3 is £24 ($37) for 10 Sachet packs.
    I took my first Aleo Vera last night and I woke feeling good. It’s only been a day but normally I wake, have a BM and than maybe another in the evening. But this morning I feel ‘fresh’ if that makes sense (than I had some coffee :S )

    I read the VSL needs to be kept at maximum at room tempature for at the most a week but favored at a cooler tempt, I also read from another article that any probotics that require the right tempt to work is too fragile to be effective!!! soooo, who knows!lol.
    I guess it’s whatever works for us. I’m glad you are doing well off Asacol :-)

    • Bev August 14, 2012 at 6:39 am #

      Wow! Asacol IS cheap there!

      Isn’t that something about probiotics and temperature. I have never read that. I have heard that some probiotics were to be refrigerated. Mmmm. Also, I’ve heard that some don’t have to be refrigerated. Once again…more confusion…but we are used to that aren’t we?!

      I’m happy that you are doing well, too. That’s all we really want, right?

      Cheers, and keep on doing great!

      Bev:)

      • shelly in maine August 14, 2012 at 12:44 pm #

        Hey Bev & UC Family Boy,
        Just wanted to let you know what I have learned about VSL 3 which I Do take….it does have to be refrigerated-i’ve also read research that agrees about the refrig. ones as well -anyway..the one I take is the sachet with 450 billion per I take 2 right now…I worked up to that much, as this is how much my intestines seemed to require and I actually increased that when I was having a flare and iritis-which I made it through without meds!. I actually started with a product called metagenics recommended by my doc. That wasn’t enough and I tried the higher and more researched vsl-capsules and worked up those. I eventually found a site with the codes for the vsl 3 ds–that is double strength -with the codes you can get your doctor to write a prescription for that! :-) more affordable for me that way since I need those higher doses.
        Hope this helps and made sense.
        Good health, shelly

        • Bev August 15, 2012 at 9:52 pm #

          Cool! Thanks Shelly!

    • shelly in maine August 14, 2012 at 12:49 pm #

      Hey UC Family Big,
      Just wrote about the vsl 3 to Bev and you and wanted to make sure you saw it! :-)

      I have the website
      http://www.probiotics-lovethatbug.com/vsl3.html. There is a code for a doctor not sure if it is the same outside the U.S.?
      :-)

    • shelly in maine August 14, 2012 at 12:51 pm #

      Hey UC Family Boy, sorry about the stupid self corrector typo above!
      Just wrote about the vsl 3 to Bev and you and wanted to make sure you saw it! :-)

      I have the website
      http://www.probiotics-lovethatbug.com/vsl3.html. There is a code for a doctor not sure if it is the same outside the U.S.?
      :-)

  8. UC Family Boy
    uc family boy August 15, 2012 at 7:08 am #

    Cool, yeh I have checked out the link. looks good.
    I need to find what works and sometimes it is difficult to work out, especially as at mo I am currently OK – Difficult when there is no clear cut answer.
    Though this last week I been nursing a stomach ache and wondering if my symptoms are on there way back even though initially I never got the stomach aches..
    I guess I am thinking lets try some stuff and see what the scope says, though I know there must be some inflammation still.

  9. Brad August 21, 2012 at 9:48 pm #

    Kristine,
    I understand your fear and frustration. I’m in Toronto and have had UC for about 20 years. I’ve learned a lot about it over the years. I can tell you where to get some good probiotics locally and other tips if you want to discuss it beyond a post or two. Mainly because we are sort of in the same neck of the woods. Email me if you want directly at

    chezbrad@hotmail.com

    There are things you can do to help it, and it isn’t as bleak as it seems right now.

    Brad
    Toronto

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