Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Losing My Life Over Colitis

Jen colitisIntroduction:

Hi y’all. I’m Jen. I was diagnosed with UC back in in January of 2012. I first felt ill in October of 2011, on my birthday actually. Thought it was food poisoning at first cuz had bad cramping, diarrhea, bloating, pain, nausea, and vomiting. It wouldn’t go away tho so ended up seeing Pcp 3x and two Gi dr.s who did c diff tests but came up with no results.

In January finally after 3 months of feeling awful and having blood in my stool, couldn’t sleep at night due to 9-10 bowel movements a night, and bad pain; I ended up in the hospital with bad anemia weeks later they stopped treatments and felt worse since. Tried lialda, prednisone, asacol, canasta suppositories, pentasa, 6mp, an now imuran.

Been hospitalized at least half a dozen times and had six colonoscopies.

Some more about me:

I’m 26 years old and have lost a lot of weight but so bloated I look pregnant and fat all the time. I love to play softball but the bending acerbates my symptoms. I just want to live a normal 26 year olds life.

Symptoms:

I’m currently in constant pain, gassy and cramping, bloated, blood with every stool usually clots, diarrhea every stool, nauseau if I don’t eat, and can’t hold my bowel movements when need to go. Have 6-10 bowel movements a night and 5-8 a day. But Dr. says that the imuran started April 5th can take 8 weeks to work.

Losing My Life Over Colitis

I’m so frustrated cuz my Dr. sent me home in pain, with blood, 15 bowel movements a day, diarrhea, and nausea cuz my blood work looked fine and so did my colonoscopy. This was Tuesday the 9th of April. I went home on the imuran and prednisone but hes certain that I will feel better on these meds but it may take months. I hate living like this and doubt that the prednisone and imuran will work. Been on prednisone during a flare up before and it makes it better but been on it straight since march and not feeling better at all. I don’t know what to do and becoming cranky and aggravated. I want to see a new Dr. and go to a new hospital but not sure how to advocate for myself so they don’t send me home again me being this miserable and having the same or worsening symptoms. Please help!

I feel like I will never have a regular bowel movement or feel comfortable eating out. Even going to the mall is so hard because of the fact that when I have to go, I have to drop everything I’m doing and find a bathroom. I’m embarrassed and feel unattractive around my friends and especially my bf. I used to be healthy as can be before this disease. Never had been hospitalized, could eat anything, and loved giving blood. Now they can never find a vein and have to put in a pic line when Im hospitalized to gets meds and to get blood out. I’m compliant with my meds and try to know everything about my disease but no one seems to listen. In the beginning they mentioned it may be beneficial to have a colostomy but now they don’t. I know I’m young but willing to try whatever may work so I can be me again and not defined by my uc.

written by Jen

submitted in the colitis venting area




9 Responses to Losing My Life Over Colitis

  1. Graham from England
    graham lee April 30, 2013 at 12:37 pm #

    Hello Jen,

    I am sorry to hear how difficult things are for you, UC can steal our youth.

    I was lucky as I realised smoking entirely stopped my UC symptoms shortly after I was diagnosed 14 years ago. I have lived well and in control ever since though I understand there could be a smoking related illness to come.

    This may be controversial and I would never tell anyone to smoke but if my UC gets that bad I will be straight on 4 – 5 per day. I would not quit until my diet, stress, exercise and sensible probiotic/supplement routine was established. I would then take extra virgin olive oil 3 times per day from the day I quit smoking. This works very well for me (and others) and its 18 months without cigarettes now. If you didn’t know, smoking seems to work for almost everyone with UC and some GI’s even propose it when all else fails, its temporary after all. I may be over stepping the mark here but you have options, not nice ones but options.

    There are two popular posts at the bottom of every page, UC/smoking and extra virgin olive oil, worth a read..

    Sorry to anyone offended by what I’ve said here, smoking gave me a life while I looked for the alternative, I will always be gratefull..

  2. bev April 30, 2013 at 5:13 pm #

    Hi Jen,

    I know how ‘shitty’ UC is. I’ve had the dreaded condition for over 15 years now.

    Graham has some wonderful ideas.

    Also, I am in remission for the first time in 14 years (for just over a year now) and am med free! Yep, med free. ALL of the UC symptoms are completely gone…the pain, the urgency, the bleeding, the nausea. I feel great!!

    I take a good probiotic every morning first thing, on an empty stomach (Ultimate Flora Critical Care by RenewLife in case you are interested) and fermented L-glutamine powder, every day, again on an empty stomach. The L-glutamine actually HEALS the mucosa of the colon! No meds heal the colon…and they have bad side effects and eventually stop working, if they even work at all.

    You can deal with and manage this condition without meds. You just have to do the work and see what works for you.

    Cheers,
    Bev

    • Linda July 5, 2013 at 11:21 pm #

      How long after you take this on an empty stomach do you need to not eat?

      • bev July 6, 2013 at 7:24 am #

        Hi Linda,

        The probiotic…wait at least half an hour to eat after taking it with water. I take the probiotic as soon as I wake up, and then I normally exercise for a an hour and a half (except Sunday…lol), so it’s easy for me not to eat then.

        The L-glutamine you just take on an empty stomach…I take it at about 11am, so I don’t eat for about an hour afterwards, at noon. I’m not sure you even have to wait to eat after taking it, but I do anyway, because I don’t want food getting in the way of it doing it’s job.

        If you take these things WITH food, they get interfered with and don’t work as well. I think that’s why a lot of people give up on them and think that they aren’t working. It matters when you take them. Might as well let them work, especially when you’re paying for them, right?!

        Cheers,
        Bev

  3. Polly
    Polly May 1, 2013 at 3:01 pm #

    Hi Jen!

    So sorry to hear about your current troubles… we’ve all been there, trust me!!! It will get better!

    You are going to find lots of great advice on this website… since you’re in the worst part of the flare, I’d recommend taking a quality fish oil supplement, a great probiotic, and Vitamin D!!!
    Boswellia is another powerful anti-inflammatory that a lot of people take, but I don’t have any personal experience with that one.

    As far as diet goes, many people on this site have found help from the SCD diet or the GAPS diet… there are all kinds of diets out there! I personally have a mix of a few… focusing on the anti-inflamatory diet. I pretty much only eat organic… and I cut out gluten, corn, soy, legumes/lenils, peanuts, sugar, fructose, alcohol… and yes, it’s a pain, but it’s kept me in remission for 5 months now (knock on wood)!!!

    Hang in there,
    Hugs from Minnesota,
    Polly

  4. Ken May 2, 2013 at 2:22 pm #

    Jen,

    Listen to what Graham and Bev say. I integrated their programs and it took me out of a long term flare when Asacol couldn’t. By following their advice, I have been in remission for 5 months now. I eat and drink pretty much anything now.

    Start the EVOO, and the L Glutamine, and the probiotics. Take them religiously and give it several weeks. Don’t give up if you have bad days in the beginning (I did). I had noticeable improvement each week, and finally no more bad days!

    Don’t be afraid to adjust quantities over time, or try new ideas.

    Personally, diet didn’t help me, but plenty of people like Polly have felt better by getting on a diet, which you can find tons of info on this site. Everyone responds differently with this disease though, so don’t give up if something doesn’t help you that helped someone else.

    I guess I’m saying that most of us on this site have had all the feelings you have now. I can really relate to your comment on being afraid to eat out. I remember finishing meals and hoping I could use the bathroom before I left, so I didn’t have to worry about the drive home.

    I wish you well, and know that relief is possible.

    Good luck,

    Ken

    • bev May 2, 2013 at 3:16 pm #

      Thank you, Ken, for telling others that these things really do work.

      Relief really IS possible.

      Thank goodness for people like you, Ken! For staying on the site and sharing your success with other sufferers.

      :)

  5. Jennifer May 6, 2013 at 7:38 pm #

    I also have had good results with L-glutamine and a good probiotic. I also drink Keifer every day. I have found by trial and error what foods trigger a flare. I was diagnosed last year and spent 2 weeks in the hospital. I do not want to go there again. I have had to make many changes in diet and lifestyle. I was formally a marathon runner and in great shape, but UC found me. I would try anything to get your flare under control and then carefully add things back into your life until you find your balance. One of the frustrations I have faced is that what works for one person does not always work for the next. It is a personal journey to your balance, but you will find really great information and support on this website. I wish you well. I hope to read a future post on how great you are doing. Take care.

  6. Mel May 7, 2013 at 4:21 am #

    I had the same trouble last year in hospital after a cocktail of drugs…surprisingly I got the best GI dr on the east coast,and all it took was ROWASA enemas…since my inflammation is particularly in my sigmoid colon it helped!
    Hope you find what works for you!! You’re not alone in this!!

Leave a Reply