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

Brand New Member to the Ulcerative Colitis Club: Rebeka

I’m 24 years old and I was just diagnosed a little over three weeks ago. Ulcerative Colitis, but the GI didn’t rule out Crohn’s 100%. Still feeling sick and confused.

I have had two episodes of bad diarrhea in 2009 and I sort of felt, that something was wrong. The doctors didn’t think it was anything other than a stomach flu. They prescribed me some antibiotics even though they did not find bacteria. The first episode just passed after about five weeks. The second one about six months later was much more painful and intense, that’s when the bleeding began. It freaked me out but the doctors were still pretty cool about it, scheduled me to see a GI three weeks later. I knew something was wrong, I had already done research and had brochures about Crohn’s Disease and Ulcerative Colitis, but the doctor was reluctant to do a colonoscopy initially (“probably just IBS”). I never got better, so he gave in. By the time the procedure took place I was entering remission I think, he barely found any inflammation and let me go with some more antibiotics.
This time I knew it was the same problem, when my diarrhea just wouldn’t go away. It was a really stressful time and that’s what I first attributed it to. But then I had to use the bathroom every hour and there was always blood. I lost all my appetite because I thought that food was doing this to me. I couldn’t get any food down without throwing up, I was drinking a lot to prevent dehydration but it didn’t work. I was running fevers. Finally I was admitted to the hospital with severe dehydration. They tested me every possible way it seems. At first they were excited about a possible parasite, and so was I. That would have been awesome! Or a bacterial infection please… But they diagnosed me with UC after a colonoscopy, because my entire colon was inflamed and there were ulcerations.

I was instantly put on prednisone, a few antibiotics and asacol. After the hospital (they let me go because I could eat again) I was hit with the high cost for the medication. I had to go on sulfasalazine, because I couldn’t afford the other drug. Two weeks out of the hospital, but I’m worse again, going about ten times a day, almost constantly on pain medication. I couldn’t wait for my first follow-up appointment with my GI. He determined, the sulfa wasn’t working for me and put me on another mesalamine. Still insanely expensive, but maybe their support program will help me. I hope they will, because I think the new medications work much better. I can tell after eight days that I’m improving. Less diarrhea, less pain, almost no blood. I’m afraid to be too hopeful.

But overall I feel so lost and overwhelmed. I lost even more weight, I am still not getting any close to normal bowel movements and I can’t sleep at nights. I don’t feel like I know what’s gonna come next. I was just told my hemoglobin was low. Last week I was running a temperature, which the doc attributed to a cold I must’ve caught. Who knows anymore. I used to be healthy, ate anything I wanted, was active, now I don’t recognize my own body anymore. Sometimes it’s like I see the light at the end of the tunnel but then I start feeling worse again. I’m so confused as to what to eat. The doctors (both GI and GP) said I should pretty much eat whatever I feel like but there is so much conversation about diet for UC. So many conflicting statements. I never felt that food really bothered my symptoms but now I don’t know anymore. I used to eat everything before this and I am pretty sure my disease didn’t just start… Once I am strong enough to do so I want to start yoga, I have been meditating a little too. I just don’t know about the food part. I used to always eat healthy, cook my own meals, avoid greasy stuff, fried stuff, avoided too much meat and too many carbs… can I just go back to that?

Ulcerative Colitis Medications:

Rightnow mainly Lialda and Prednisone.

Also on dicyclomine to control the cramping,

I am glad I’m on it because the pain was killing me.

 

Submitted in the Colitis Venting Area by Rebeka




mesalamine

9 Responses to Brand New Member to the Ulcerative Colitis Club: Rebeka

  1. shannon November 17, 2011 at 12:43 pm #

    Hi rebeka . Im a ucer an crohnie. Ohboy. Had this since 2000. Crazy ups n dwns. This disease is so horrible. Im sure u are finding out. I have been on this website for a few wks an love it. So many caring ppl. An your not alone. I thought i was but found many friends here. I just bought the scd diet so i hope it will be helpful an change stuff inside. Ive been dwn for 2 mo now an i feel so bad an insecure with myself. It does horrible things to your inner person. It rips away your pride at times. Your sexyness an makes u feel depressed. Thank god for this site. I wrote a few stories on here. Its a lonely disease. Shouldnt i or shouldnt i. An other comments. Ck them out an dont be affraid to let it all hang out makes u feel better. Take care shannon

    • Rebeka
      Rebeka November 17, 2011 at 2:02 pm #

      Hey Shannon,
      Thanks for your comment. I have been reading your posts, also the spiritual one. I have an aunt who practices chinese and alternative medicine and she says things like that all the time. It seems like when our energy levels are all synched up she can tell what’s going on inside of me. Prayer must have the same effect. Great experience!
      I’m also really glad to have found this website. I’ve just started to really research and do some reading, because the doctors just don’t tell me anything.
      I looked into the SCD but I’m still reluctant to do it, because I am a very passionate eater and chef. I will end up doing it if I can’t get my flares under control. Rightnow I put restrictions on my diet and I’m slowly trying out more things, like raw veggies and yogurt. I’ve always cooked at home and made things from scratch, so I’m hoping that just sticking to a healthy diet will do it for me. I hope that the SCD will help you and make you feel better. The UC DOES make you feel horrible… (the whole sexiness thing..) so sad, but what you gonna do? I am actually surprised at my own patience and strength sometimes. Just gotta try and stay as optimistic as possible. Good to have family who care.
      Thanks everyone for taking your time to read this.
      Hope today was an alright day for most of you!

      • shannon November 17, 2011 at 5:23 pm #

        Hey there. Glad to hear back from u. Ya drs are disappointing. Gd diets can help but i think when we are in a bad flare i think its gonna run its course. By my own exp. All the meds in the world dont stop mine. May help a bit but dont put me in remission.
        Well stay healthy. An as for my sexyness i kinda shut dwn while im sick. My hubby hates that.

  2. Peter NZ November 18, 2011 at 12:54 am #

    Hi,
    I remember the first few weeks being pretty freaky. Never heard of this disease before.
    But whilst it might seem overwhelming at first and it is easy to think the worst – try to take it easy, one day at a time and learn as you go.
    I’ve had this thing for ages and it never stopped me doing anything. Hey, I’d rather not have it but it is not the end of the world.
    Food?
    Who knows?
    All the best,
    Peter

  3. Jo November 18, 2011 at 3:06 am #

    Hi guys,

    Just wanted to add my tuppence worth. I’ve had UC for more than 3 years, and had a couple of bad episodes – once last year and once this year. The medication did nothing for me, although I never went as far as the Pred. I had seen my mother on high doses for her Leukemia, and it frightened me. After believing I could never follow a diet as strict as the SC diet, I finally started a few months ago, and while I haven’t been the most disciplined in terms of taking it slowly, I am gradually starting to see results – much less blood and down to 1/2 BM a day – woh!

    To be honest, I love this diet so far. It’s so healthy, and actually I enjoy the cooking challenge. I used to be a carb queen. I could have eaten a bowl of rice on its own and mountains of pasta. Now, it’s all about the protein, the veg, the salad, the fruit, and the yogurt. I’ve also been experimenting with almond flour and coconut flour, making banana bread and raspberry muffins, although coconut flour is my preference. I’ve been getting much more experimental in the kitchen, and frankly this might be the making of me. My skin is glowing, my energy levels are going up to the point I might be able to go running again, and my rosacea has completely cleared up. Just need my hair to recover now.

    Good luck to you all, and yes, this site is great! It is a lonely disease in that no-one really understands unless they have it, so these forums are brilliant for helping you to cope and for ideas.

    Have a happy, healthy weekend all!
    x

  4. Rebeka
    Rebeka November 18, 2011 at 11:57 am #

    Good to hear you are feeling better and I’m happy the diet is working for you, Jo! I want to try to make the banana bread or raspberry muffins too, because I miss sweets so much. It’s an interesting time, experimenting with foods, new meals…
    Have a great weekend!

  5. Lara
    Lara November 21, 2011 at 9:47 am #

    I also was recently diagnosed. The first couple weeks were really rough. I spent a lot of time in bed watching Judge Mathis. And I bugged everyone on the phone at my doctor’s office because I didn’t know what was going on. It took some time before we found some medications that really seem to work for me. Try to be patient.

    Also, ask your doctor if he wants you on a special diet. He may know of something that will limit your bowel movements.

    The food issue has become a HUGE factor in my life. What I once could eat, now I can’t. :( Unfortunately everything is trial & error. But the days will get better. It just takes a long time though.

    • Rebeka
      Rebeka November 21, 2011 at 8:31 pm #

      Lara, thanks for your comment.

      I also bug the doctor’s office a lot. But I don’t really feel that they can help me, I have been close to go out and look for a new GI, I don’t really feel like he has good advice on how to deal with the UC (like when my GP’s office calls “your hemoglobin’s low, what’s going on?” well I don’t know…I have bloody diarrhea “okay we’ll fax the results to you GI” and no one ever called back to tell me whether I’m anemic now or what. Just did another bloodwork today and I’ll call them all again in a few days)

      Anyway, I feel that I’ve learnt an insane amount just on my own through research and trial and error with food. When I asked the GI about diet he pretty much said “eat whatever you feel like eating” maybe because I told him how my diet used to be prediagnosis. I don’t know.
      All I know is that I seem to be getting better slowly.

      Are you in remission now? What worked for you?
      I hope you have a great week!

  6. Merzad October 22, 2014 at 8:12 am #

    Hi

    I got diagnosed with UC in 2012 but it wasn’t much. I almost ate everything. It got worse in May 2013 and had to be hospitalized. I pretty much stopped eating everything and ate only limited food day and night. It improved but after having steroids for 4 months, its withdrawal effect took place which lasted another 4 months. My professional life went for a toss. Is surgery a cure for UC?? What are the chances of a successful surgery… n what exactly is done in the surgery??

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