Ulcerative Colitis Tips


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My 40th Birthday Gift…Ulcerative Colitis

This is Who I Am:

I am a 42 year old female who was diagnosed with UC about a year and 1/2 ago. It has been an ongoing struggle and I can honestly say I have not been in remission for the entire time, until I recently started Prednisone.

And Here’s My Colitis Story:

When I was first diagnosed I was told I had proctitis and only about 20% of cases become more widespread and develop into Ulcerative Colitis. Unfortunately the suppositories only worked for a short time and I went back to be re-checked. I moved on to enemas and Lialda. They both made things better for a couple of weeks and then slowly my symptoms started up again. Finally the MD suggested a sigmoid. The sigmoid, which was quite painful :(, showed that the ulcers were now beyond the rectum and that indicated true UC.

I finally started on 40 mg’s of Prednisone and titrated down over 8 weeks.

I felt great on the Prednisone

and did not have any bad side effects,

except a little weight gain.

Now that I am off the Prednisone, all my symptoms have come back with a vengeance. I guess Remicade is the next option, but I am not looking forward to being on something long term. I am going to give a severe change in diet a try before I move onto the Remicade.

Scheduled for another colonoscopy this month to see how extensive things have gotten. Can’t wait to prep for that :). Good times! I don’t usually share this stuff with anyone, but I just have no one who understands and is willing to talk. I am married with 3 kids but everyone is so busy and caught up in their own life that its hard. My husband is an insulin dependant diabetic, so he has his own challenges. I hope to find some support in this forum.

I have always been healthy, exercise regularly and maintain a good weight. I have been zapped of my energy since I had this diagnosis and was wondering if others have had the same experience. As a result, I don’t run regularly like I used to. I have gained some weight and would like to exercise, but with all the symptoms, I find it difficult. I also work about 60-70 hours a week and spend the rest of my time with the kids. Looking for a way to increase my energy level. The Prednisone was great for that, but short lived.

Thanks for the site and any support or comments

would be welcome!

Submitted by PHILLY in the Colitis Venting Area, feel free to share your story too!

 




16 Responses to My 40th Birthday Gift…Ulcerative Colitis

  1. Adam
    Adam November 5, 2011 at 6:08 pm #

    Hey Philly,
    Thanks for sharing your story.
    I really hope you get to see and feel some relief really soon no matter what you try, whether that be Remicade or diet or something else. There are plenty of people who get good results from all sorts of different treatments. It seems that you and me are similar with little or no benefits from the mesalamine meds. i think they were actually hurting me instead of helping me, but I’ll never know for sure.

    One tip that I have been telling lots of people lately is to think about your diet in terms of food, but also drinks as well.
    I believe in hindsight that one of my biggest problems after I was diagnosed was my “ability” to drink 128 ounces of gatorade per day. I thought all the gatorade was for sure a benefit since all the sports people and athletes pound it all day…but now I don’t think so at all. Too much sugars in there that my body just can’t handle. Anyways, there might be some things you can change up drink wise very quickly that may show you some improvements too. I also, stay away from milk 100%. Haven’t had milk in quite some time now, and that has seemed to help heeps. Take care and if you have any SCD diet questions, i’d be happy to try an answer them for you. that’s the diet i follow.
    all the best to you Philly!!!!:),
    Adam

    • Bryan November 6, 2011 at 3:34 pm #

      Philly,

      Your definitely not alone I can’t get off the Prednisone either. They want to put me on remicade but there’s a high risk of infections when your on that long-term too so until they come out with a cure its going to be a on going battle, but people here will lift you up and make you feel a little better

    • Elizabeth November 7, 2011 at 7:41 pm #

      I’ve tried soy milk blended with banana’s to give it the sugar thats natural, any of the soy drinks with chocolate or vanilla already in them aren’t nearly as bad as some of the other drinks. Soy drinks bring the energy back, protein is The most important thing I think about when I get to that stage of not being able to even walk.

      Good Luck,
      Liz

      • Adam
        Adam November 9, 2011 at 2:01 pm #

        Hey Elizabeth, I had for the first time last night coconut water, wow, pretty darn tasty. Maybe you can get some from the coconut trees there in Florida? Anyways, just an idea, was thinking of you. laters, adam

  2. JamieIsLame
    JamieIsLame November 5, 2011 at 6:18 pm #

    Hey, I’m sorry to hear you got such a bad birthday present, if someone gave me ulcerative colitis for my birthday, I think i’d ask for the reciept :P

    Don’t worry about remicade yet, after Lialda and Enemas, they’ll put you on imuran or 6-mp before they try remicade! also, if remicade isn’t possible for you (ie. you can’t go to the hospital every 8 weeks) they might be able to give you humira injections instead! don’t jump the gun yet, leave it up to the doctors!

    I was on 40mg tapering down over 8 weeks too, I started to get worse and worse, but now at 5mg, my bm’s aren’t completely solid again, but I’ve stopped bleeding! maybe try take aloe vera and Omega 3, 6 +9 supplements, I honestly believe they’re what stopped the bleeding for me!

    Good Luck :)

  3. stacy November 5, 2011 at 6:28 pm #

    I’m so sorry you are having a rough time! My first year was very tough. I was diagnosed about a month after turning 28. I have it almost 3 1/2 years now. I still flare briefly every few months, but I’m doing so much better after making changes to my eating. I hardly ever eat out anymore. I don’t drink alcohol or soda. I stay away from salty and greasy food. It works for some, not for all. Uc is a learning journey. You have to try a lot of things to see what works. For me, exercise is my top treatment. I do it 4-5 times a week. I’m healthy and have energy now. It was not always this way so I am grateful everyday. Work hard and don’t give up. You can control this disease without it controlling you!

  4. betty November 5, 2011 at 6:54 pm #

    I truly understand how ur feeling..tried te meds out there my body rejects them so my next step is remicade & like you. I’m not ready to make that lifelong commitment.I take mega vitamins I was doing good until I got a flu shot (which is needed since I work in a nursing home)now I’ve put myself back on prednisone & restart this game again..good luck as u know all of our diets are diffrent so you’ll have to figure what works for you 2

  5. Hel November 5, 2011 at 10:21 pm #

    I really felt for you reading your story. I’ve had UC fir 24 years, diagnosed at 23. And I’m still learning now about what helps and what doesnt. Like Adam I find the SCD diet helps me. And re. His drinks comment, I found giving up coffee helped me and milk too. Mesalazine makes my UC worse and I can’t tolerate azathioprine( imuran?) been steroid dependent fir many years which has given me other health issues. Now trying infliximab ( remicade) as last option before surgery. Hope you find something that works fir you, and soon. Xx

  6. tuxedobird November 6, 2011 at 6:07 am #

    Be careful with Prednisone. I took a lot of it in my 20s and have osteoporosis in my 50s because of it. you may haveo slow your life down a bit. Many of us are Yype A personalities but ypu have to give yourself a break or you will be no good to anyone including your kiddos.

  7. Hopskotch November 6, 2011 at 11:38 am #

    Hey Philly! Another vote for watching the beverages. I like Diet coke and coffee, but they don’t like me! Artificial sweeteners can aggravate things, as can caffeine of course, but I think even decaf coffee bugs me a bit. I’ve also got a crazy life with long work weeks and travel (though no kids.) Yeah, it’s tough when flaring alright! (And drinking diet coke to stay awake, ouch!) I try and make sure to schedule non-physically active down-times when I can (reading, watching movies rather than shopping or hiking, e.g. This of course might be a lot harder with kids!) Also, make sure you are drinking enough water. Getting dehydrated makes you more fatigued, so sometimes just downing some extra water makes a noticeable difference. The best thing though really will be to get the flare under control. I find I can function reasonably well with a mild flare, but when it’s bad and I’ve got the fevers, that’s when fatigue really interferes.

    Re: exercise: have you tried swimming? I swim regularly whether I’m flaring or not, and I discovered it really helped me feel better (physically and psychologically) in my current flare. I also found it more flare-compatible than walking or running, which would have me racing for a toilet in short order. I find I sometimes have to cut back on swimming because of the flare, but I do as much as I can.

    Random tip re: colonoscopy prep: The stuff you drink tastes awful, but a GI nurse once tipped me off that you can sweeten it with (non-red) Crystal Light. Check with your doc’s office, but works great for me – if I start gagging on the stuff I just add more. There’s no getting around the prep potty marathon, but since you have UC I imagine you are pretty used to those already. :-) Feel better!

  8. Charis November 6, 2011 at 4:25 pm #

    It’s good that you found this site! You are definitely NOT alone!
    It sounds like you’ve got quite a lot going on between the UC, your job, and your family. My advice to you regarding exercise is this: Even if you can only carve out five minutes a day to go for a short walk (it doesn’t matter where – it could be back and forth in your living room!), you’ll feel better at least mentally because you did “something.” And you CHOSE to do that. UC has the ability to completely consume our lives if we let it, you have to take back control starting somewhere. I found that once I started doing small things each day to be active that I ended up having more energy as time passed, even if my symptoms were getting worse, and I was then able to be active for longer periods of time. It’s a slow process.

    I hope you find relief and energy soon.
    -Charis-

  9. Bec November 6, 2011 at 8:37 pm #

    Hi Philly,

    Great to read your story and others alike.

    I too am in my 40’s (just turned) and have 4 children aged 15 to 3 years. I was diagnosed with UC about 2 years ago. Though like you, more contained to the Sigmoid area. I have been on Mesalazine, orally and enemas which didn’t stop the flairs. The enemas did help though I really don’t like doing them. Not very romantic either! I still sometimes have to if things are quite flairy and sore!

    About 3 months ago i started on prednisone with azathioprine. (Imuran)
    The prednisone worked and it was such a relief not to be rushing to the loo and not bleeding!Though when I came off the prednisone after 4 weeks the flairs came back. Even though I am taking Imuran and I will be on that for about 5 years. My GI and I are (with regular blood teats) hoping to get the Imuran to the right level for me, which is just a matter of keeping going and again blood tests. I’m now up to 200mg of Imuran a day and am still bleeding with rushing to the loo about 5 times a day.

    I am finding that I am lacking energy at times. (hard to tell if thats UC as well as being a busy mum, I do 5 hours paid work week) I am going to start looking at my diet more by starting to eliminate coffee (I love coffe this is my vice, so this will be a hard for me!) diet coke etc and see what happens. I have downloaded the SCD so will have a read.

    Philly I find with the ‘busyness’ of being a mum and UC getting ‘you’ time is just so important and for us all! Great to hear your stories.
    Bec

    • Erica November 7, 2011 at 7:52 am #

      I was diagnosed at 40 as well with FABULOUS UC like you! Isn’t it great? NOT!! My story is… I refused meds jumped on scd which worked for about 9 months to keep me symptom free. Then the blood started creeping in little by little until it was alarming me with panic…..I started another protocol which I learned a lot but to no avail. Then I ordered AMP Florcel which stopped the urgency and bleeding…..on top of that I started the vIT E CURE. Now it’s been a month and 12 days with NO MORE Bleeding, no urgency, no muscos, no pains or pressure in rectum with inflammation like I used to feel on a daily basis… This has worked for me thus far and I couldn’t be happier!!I hope you get relief soon…and try not to let it consume you . I understand!!KEEP FIGHTING EVERYDAY!! :)) Please email me if you want to talk more…noonpiper3@cox.net

      • Erica November 7, 2011 at 8:06 am #

        Philly…. Also I was mild to mod UC at time of diagnosis. Doctor said I had UC in 2 seperate places in colon… kinda rare. Rectum and cecum (beginning of colon). Docs don’t know and can’t predict outcomes of this terrible disease. I have been to two previous GI doctors and this last one from UT SOUTHWESTERN here in Dallas (Specialist) best of the best and I never went back and decided to stick to my way…. I will fight this damn disease tooth and nail. I will only go back if last resort but don’t plan on it…..God willing! ( Only procedure I’ve had is 1 colonoscopy) I guide how well I’m doing by how I feel…. not buy another colonoscopy….it wont change what is there or isn’t… I feel the best I’ve felt this last month due to AMP and vit e..ONE or both completely changed inflammation in my body. What works for one may not work for another….

  10. Mike S. November 7, 2011 at 11:28 am #

    Hi Philly,

    As you can see, you have a ton of support here. I hope you got at least SOMETHING for your birthday that you really wanted! I have had UC for over 30 years, and my last flare up was a couple of months ago and that lasted about one month. Luckily I did not have to go back on Prednisone. Glad you are able to work. Is it hard to get out of the house for you? It is me, especially in the mornings. I take Immodium when I can get it, takes awhile for it to work but it eventually does. Can you exercise at home? You can do a lot with a pair of dumbbells and a flat bench. I used to be a competitive bodybuilder back in the day and after my kids were born in ’98, I started to buy my own gym equipment as I was calling home in between sets just to see how they were doing. With just a flat bench (can also be an incline/decline/flat combo), you can do pullovers, dumbbell presses, sitting shoulder presses, one-arm dumbbell rows, dumbbell squats (standing in front of one end of bench, squatting down til butt touches bench then back up), sitting dumbbell curls, crunches, tricep kickbacks, dumbbell extensions, dumbbell flyes, and even more …) I tried to incorporate at least 1-2 exercises per bodypart. Hope this helps you and remember, this is just for strength and muscle tone. Don’t forget to walk for aerobic activity. Anyone can do that. These, along with diet and you can hopefully get back to where you want to …

  11. Blu November 10, 2011 at 6:22 pm #

    I have had proctitis since the age of 31 (9 years ago). Have only had 3 flares since the initial diagnosis (they ALL have occurred in April and all after I have lost more than 20 pounds, which my doctors claim is all just strange coincidence). Every time I have a flare, my doctors insist I try mesalamine, because they insist it works on almost everyone with proctitis. Like Adam has mentioned, I have a sneaking suspicion that stuff makes me even more sick, but have no real proof of it. But, they don’t want to put me on Prednisone if something safer will work. So, we play this little game where I dutifully take stuff I don’t think is going to work, until I get so sick, they put me on Prednisone, which actually stops my flares. I am one of the few people that actually loves Prednisone. I will take the moon face and the weight gain any day, over spending half my life crying in the bathroom because it hurts to go and the other half of my life in a mad race to make it to the bathroom in time. I am currently tapering off Prednisone after having the worst, most painful flare of my life, since April (of course).

    Check with your doctor, but I think what has helped given me energy back is taking prenatal vitamins (which have more of the types of vitamins/minerals that a woman who might be low in Iron would need) and also a probiotic. I also have realized that I need more sleep when I’m in a flare and it’s just not something I can compromise on, or I will feel worn out and not be able to function properly.

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