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

My UC

57 year old with ColitisMeet Skip:

I’m 57 yrs old ,I’ve had lactose intolerance since I was 26 years old.  I have always been active & healthy .
I’m a Vietnam Vet & served in the US NAVY

Some more about me:

I’m still a kid at heart , don’t feel 57 until I look in the mirror :) I went to collage to be an art teacher,but unfortunately that didn’t happen ,life took me down a different road . I live in N.H. & have 8 grandchildren & 1 great grandchild !

Colitis Symptoms:

Right now I’m on prednisone started out at 60mg a day for three wks so my UC is calmed down .I don’t have a solid stool yet but I’m not bad . I went from 15-20+ times a day to 2-3 times a day .

My Colitis

Right now I’m on prednisone started out at 60 mg a day for three weeks so my UC is calmed down some what .but for three I was in the ER twice. I started with going to the bath room15-20+ times a day 24-7 till I was so dehydrated I had to go to the ER, I was told I had the stomach flu & sent home.The next week was as bad ,but when the blood started I really got scared and went back to the ER ,this time more tests and was told they thought it was UC .  The next week had a colonoscopy and was told I had severe Ulcerative Colitis.  I’m going 2-3 times a day right now, nothing solid but not bad. I really feel like the prednisone was a life saver. So now the Dr. Has me going down 5mg every week .so this week I’m on 55mg next week50mg a and so on till I’m off of them.Also at the same time he put me on apriso-mesalamine 375 mg 4 pills in the am .

I’m just so nervous that once the prednisone is done that ill be right back to where I was. I have also changed the way I eat now . I make smoothies every morning and afternoon, I’m getting more fruits & veg. then I think I ever have . I’ve cut out all fried food , and started reading everything I can on the Internet about what to eat and how to control a flare .   Seeing that I’m only a couple of months into this UC, I’m not sure what to expect, can I definitely expect to get a flare? Is mesalamine going to work? Should I have some prednisone as back up?

I’m going to visit my daughter in Taiwan for three months and I really think I should have some prednisone with me just in case, any suggestions ?

Colitis Medications:

Prednisone 60mg for three wks now reducing by 5 mg every wk . Also taking 375 mg 4 a day of mesalamine. Apriso
Also take a probiotic a day.

I feel like the prednisone was a life saver, though I am having side effects from it: puffy face, breaking out, sleepless nights, irritable, joints ache, but am willing to put up with all this to never have another one of those attacks again!!!!!!

written by Skip

submitted in the colitis venting area




14 Responses to My UC

  1. Angela February 3, 2013 at 9:33 am #

    Hi Skip!

    Prednisone is an amazing drug, but it does have it’s limits. The reason your doctor has you on the step packs of prednisone is to help limit its side effects and also to prevent dependency. Being on prednisone for long periods of time (years) causes your body to become dependent on it and makes it much more difficult to get off. I highly recommend talking to your doctor first about your concern of a flare up and about using prednisone because its not a drug you want to be self medicating with.

    I have had UC for 10 years (I was diagnosed when I was 14) and was on prednisone for 3 years straight and did become dependent on it. Your side effects are normal! When I first went on it, I gained 20 lbs in a matter of weeks (I was also severely underweight to begin with so I didn’t mind the weight gain) so don’t worry. Once you stop the prednisone the side effects will go away.

    Here’s what to expect. Everyone is different and responds differently to treatments, and it will take sometime to find what doses/meds will work for you, just stay positive! Yes there will be flare ups in your future but the meds will help control it as well as your lifestyle. Stay active! And keep reading up on the diets and these flare ups will not be anywhere near as bad, maybe a just a day or two when you don’t feel so hot. Minimize refined grains and sugars and anything with lots of preservatives.

    Also, artificial food dyes are hard on your intestines as is pop (or soda, sorry I’m from the midwest). My doctors also told me to stay away from NSAIDs (non-sterioial anti-inflammatory drugs) like aspirin, advil (ibuprofen), and aleve (naproxen) as they can irritate your intestines. Only take tylenol (acetaminophen) if you need a pain reliever.

    Also, my tips for being abroad (I was in Japan for 1.5 months, and England and Italy for a year). Stay with your diet! And take tums and anti-diarrheals with you. The change will make an impact on your GI track but it’s only temporary (first couple of days). Try to drink water out of bottles as you’ll be more sensitive to the chemicals they use to treat the water and stay hydrated. Take the anti-diarrheal sparingly. Its only for an extreme situation say if you get caught on a long bus ride or in a town where there’s no public bathrooms and ONLY if you feel you won’t be able to control it. I don’t like them as they’re only “bandaid” fixes but they’ll work in a pinch.

    Good luck! And stay positive! It’s amazing how much that’ll help you in the long run!

    Best,

    Angela

    • Skip
      Skip February 5, 2013 at 10:15 am #

      Hey Angela,
      Thanks for sending some good advice, right now I’m going through a bad flare up, Dr put me back up to 60 mg. of prednisone I was down to 35 mg.but all my symptoms came back ,pain ,bleeding ,many trips to the bath room,afraid to leave the house to go any where.
      I have changed the way I eat ,though it is hard. I gave up soda(pop) :)fried food and I’m reading every thing I can . Making smoothies.
      Once I get to Taiwan ill only drink bottled water ,they have a Costco there so that’s where my daughter shops. My Dr.has said he will give me some prednisone to take with me ,but I’m hoping to be in remission before I leave ,but right now it’s not looking good.
      I was reading another post on this site about taking 3table spoons of extra virgin olive oil a day helps with UC, I’m willing to try anything at this point . Thanks again
      Skip

      • Angela February 5, 2013 at 5:26 pm #

        Hi Skip,

        You’re more than welcome! The flares are always the hardest. Just hang in there!

        When you get back, talk to your doctor about immunosuppresants. It seems to be a growing trend that a lot of people are being treated with anti-inflammatory drugs (like mesalamine). Which seems more like a way to limit the symptoms than to treat one of the potential causes. I was never treated that way. When I was diagnosed I was told that UC is an autoimmune disease (your immune system for some reason or other can’t differentiate between your own cells and invading virus/cells and therefore attacks healthy cells). One of the tests for is an auto-antibody blood test. Immunosuppresors weaken your immune system so that it can’t attack your cells. Examples of these drugs are 6-mp and methotrexate. I was on both but needed Remicade instead (which is still blocks parts of your immune system). You just need to be more careful with people who are sick around you and you can’t get live or partially live vaccines (but that’s no biggie). Its worth a conversation at least with your doc as a possible different treatment route.

        Have a great time in Taiwan!

        Angela

  2. alex February 3, 2013 at 4:38 pm #

    hey skip good to hear your story. This disease can be really difficult, especially when you’re just starting out and trying to figure out how it all works. In my experience it works differently for everyone, so most of your questions unfortunately I do not have any definite answers.I guess my best suggestions would be to keep searching for all the information that you can can try different things, and find out which ones work for you. It’s a bit of trial and error.I personally have found the prednisone to be a double sided sword.also since you know you were going to be out of the country, I would do my best to research the procedure if you need to seek medical help well you were in Taiwan. It’s always better to be prepared. Talk to your doctor. Once again thank you so much for sharing your story, I think every time we tell our own story it helps us and untold others.
    Good luck,
    Alex

    • Skip
      Skip February 5, 2013 at 10:22 am #

      Alex ,
      Good advice about seeking out medical help if I need it once I’m in Taiwan. Thanks for taking time to help me get a grip on this god awful disease ,it helps that we can talk & vent and somebody will listen & understand .
      Peace !
      Skip

  3. Maggie February 3, 2013 at 6:34 pm #

    Hi, Skip. Alex is right about the prednesone but going on a trip out of the country, you should talk to your doctor and if pred helps you, maybe taking some with you would be a good safety net. That’s so cool you’re going to Taiwan! You shouldn’t have any problems with the food there I would believe, lots of seafood and vegies. Hope you have flare-free and awesome trip.:)

    • Skip
      Skip February 5, 2013 at 10:33 am #

      Thanks Maggie
      I hope to have a great time , can’t wait to see my two grandsons one is 5 the other is 6months ,and of course my daughter & son in law.
      I’m praying that I can get my UC under control before I go .
      Skip

  4. Angie
    Angie February 3, 2013 at 8:14 pm #

    Hi skip! Sorry to hear about your diagnosis but at the same time, welcome to the UC community! I’ve been living with UC for 10 years, and just travelled overseas for the first time this past summer. I made sure I spoke to my doctors (gastro and reumatologist) well before leaving. I expressed my concern and fears about being out of the US and they completely understood. I was straight forward with both doctors and asked specifically for a letter to be written from each of them outlining my disease, the medical protocol should something happen while in Greece, their contact information and the necessary drugs needed to be carried by me in case of an emergency (this was also in case I was stopped by airport authorities or authorities out of the country for clearance). I was especially worried because the only pain medication that works for my severe arthritis (due to UC) is not available in Europe. I also made sure a new prescription with plenty of pills was filled in time for me to carry them with me on the trip. These meds included prednisone, mesalamine (canasa), Norco, sulfasalazine, and venlafaxine. I DID end up having to use the meds during my 6 week stay! I was grateful I had them and that it kept me from having to seek medical attention while over there. Good luck!

    • Skip
      Skip February 5, 2013 at 10:27 am #

      Angie,
      Wanted to say thanks for your input it really helps. I think I’ll ask my Dr for a letter to just in case I need to seek medical help while I’m there . Hope all is well with you
      Skip

  5. Skip
    Edwin February 3, 2013 at 9:59 pm #

    Hi guys , thanks for answering me back . All your comments are helpful . Right now I’m down to 40mg of pred. & 375 mg of Apriso a day.
    Now I’m back on the can 10+ times a day . This is what I was afraid of. I’m hoping to try and get under control with watching what I eat !

  6. Skip
    Edwin February 3, 2013 at 10:11 pm #

    Hi guys , thanks for answering me back . All your comments are helpful . Right now I’m down to 40mg of pred. & 375 mg of Apriso a day.
    Now I’m back on the can 10+ times a day . This is what I was afraid of. I’m hoping to try and get under control with watching what I eat !
    I’m also getting al the side affects of the pred. now, puffy face , gained weight ,fingers cramping up,sore in my mouth,black& blue on my legs ,sleeping a few hrs. a night & grouchy! Maybe pred. isn’t as good as I thought !

  7. bev February 4, 2013 at 11:22 am #

    Hey Skip (Edwin)

    You should DEFINITELY incorporate a 50+ billion strain probiotic into your daily routine. Every UC person should. I had no idea about good bacteria until I had UC. I never believed in probiotics until I started taking them. Best think I EVER did for my UC, bar none. I managed to get into remission just on that, although it does not work for everyone, and I am on NO medication wjatsoever, after taking mesalamine for 15 years straight. It stopped working for me a long time ago, but I kept taking it because the doctor said that I MUST!

    Anyway, long story short, take the probiotic first thing in the morning, empty stomach, and then try not to eat for at least an hour afterwards. If you have to eat first thing in the am (as some people seen to have to do), then I suggest taking the probiotic either at bedtime, if you haven’t eaten two hours prior, or get up in the middle of the night and take it with water, then go back to bed!

    Cheers and all the best,
    Bev:)

    • Skip
      Edwin February 4, 2013 at 1:40 pm #

      Hi Bev , thanks for that info. was wondering what brand of probiotic you use ! Today is a bad day for me , bleeding heavy, back and forth to the B/R 10 + times . Called my Dr. Now he wants me to go from being weened from 60mg of prednisone to 35mg now he wants me to go back to 60mg for two wks. Then to start to ween down again . I hope he knows what he’s doing cuz my body is going through a lot of side affects. Peace!!!

      • bev February 4, 2013 at 1:54 pm #

        Hi again, Edwin,

        What your doctor is doing is so typical…the doctors are all the same. They all tend to follow the same protocol. The med merry-go-round. We’ve all been through it. It took me 15 years on the meds, with alot of advers side effects, to finally help myself. The doctors all do the same thing…namely, try one drug, it stops working, up the dosage, it stops working eventually, try another drug, and the same thing happens over and over again. Unfortunately, UC does not respond to ANY meds for very long, and in some cases not at all!

        I take a probiotic called ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. One caprule per day. Costs me about $40 per month. A freaking bargain compared to what I spent on 15 years worth of meds!! I was such a non-believer of all things natural…but I have changed, now. I wish I would have tried probiotics FIRST…not 15 years into this godawful ‘condition’. What did I know, I guess. Sad, though, that we all go through mostly the same myriad of meds and 100% of us never get ‘cured’ to the point where we can live normally again. I think you can only attain and retain true remission by finding what NATURALLY works for you. Each one of us seems to be different in this UC journey, YET ALL of us stop responding to the meds…uncanny, huh?

        Just to let you know, I also take fermented L-glutamine powder, every day, mixed with a bit of juice (for taste) which heals the mucosa of the colon. Body builders use it for muscle repair, but it did absolute wonders to stop the UC bleeding, which is the ONLY symptom that the probiotic did not take away.

        Cheers and please do try these two things, or just the probiotic if the bleeding is not an issue after a couple of weeks on it…you might be surprised! Prednisone is a terrible drug to be on in so many ways…

        Bev:)

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