Ulcerative Colitis Tips


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"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

Went From Mild UC to Severe UC

Introduction:

Hello everyone, my name is Kimberly and I am 34 years old. I live in Hawaii, I am married and have a 9 month old daughter. My family is the reason my life is so wonderful; they are the reason I can deal with having Ulcerative Colitis and strive to get better!

I was diagnosed in 2001. In 2000 I started seeing blood and mucous in my stools everyday. A year of this went by before I finally saw a GI doc and had a colonoscopy. I was diagnosed finally and at the time had no idea what I was dealing with.

My Symptoms:

Right now I am just getting over a flare that started in August. I am having about 3-5 bowels a day that are just barely moving away from being diarhea. I see just a little blood but am much better than I was just 5 days ago.

My Story:

From 2000 to 2009 I had occasional flares with just blood and mucous, with 3-5 bowel movements a day, but no diarrhea. I would say during this period it was just a nuisance to have UC. I could still pretty much function as normal, I just was a little tired from losing the blood and just had more urgency to go. In 2009, I had my first severe flare. This flare brought me to the ER with diarrhea 10-20 times a day, blood, fever, inflamed eyes, and chills. I was put on prednizone and after a couple months went back to almost normal. I then went into remission, had a baby, but in may 2012 a second severe flare came about. This time I went straight to the GI doctor and got on prednizone right away, but after stopping the meds in June, my flare came back even worse in August. I was back to bloody diarrhea 20 times a day, only this time I went back on prednizone and it only helped a little. I went down to about 15 bowel movements a day. My doctor request ed for me to go on Remicade. Unfortunately it took over a week for me to get it. In the meantime I ended up in ER again with a fever, painful hemorroids, chills, and lots of pain. I spent 4 days in the hospital and it was so scary! They were just pumping pain meds, antibiotics, steroids, and finally the remicade in my IV. I felt like I was never going to get better and my heart was just fluttery. I had been sick like this for over a month and it was so painful to go to the bathroom.

About 4 days after remicade I finally started to slow down and get better. Now I am at about 3-5 bowels a day that are less diarhea more normal and less blood. I have my second remicade shot next Tuesday.

They are fighting my flare aggressively, with not only remicade but still prednizone, endocort, imuran, and canasa.

The plan is to get down to just the remicade

in the next couple months.

Being on all these meds freaks me out. It freaks me out too taking the Remicade and Imuran which shuts down the immune system! I know that is what is needed for me because of the nature of this disease but it is scary.

At my last colonoscopy in August of this year, they saw a lot of inflammation and even saw some in the small intestine. The GI doctor says there is a chance I may have crohn’s instead of UC. But all these years I have always been told UC.

I also must point out I love food and I think it may be my enemy! And here I take these meds that make me want to eat more! I am trying so hard to deal with this. I often wonder how others with my problem do with this?

Where I’d like to be in 1 year:

I want to have a second child in a year, so even though my GI doctor is saying I may need to be on remicade for years, I will likely want to be off it after a while so I can have another baby. And I’m not really sure I want to be on a medication like that for long term anyway, if I can avoid it.

Colitis Medications:

I started on Asacol and Rowasa as ways to handle my flares. Moved on to prednizone for my first bad flare, with Asacol and canasa. Now for this flare, prednizone, endocort, imuran, canasa, probiotics, and remicade.
It was scary that prednizone worked until this last flare. But it seems either the imuran or remicade is now working. I hate taking all the meds but am so relieved to feel better.

written by Kimberly

submitted in the colitis venting area




severe

15 Responses to Went From Mild UC to Severe UC

  1. Adam
    Adam October 2, 2012 at 10:42 pm #

    Thanks so much for sharing your story Kimberly. I really hope that you can get things squared away and move forward with the awesome goal of having another baby, and I’m sure you will.

    And don’t sweat the food urgers, totally normal if you’re taking prednisone. If you want to read more about side effects from those crazy little pills, I conducted a survey with a bunch of people from the site not too long ago on prednisone side effects and quite a few people mentioned increased appetite (which quite possibly your doctors mentioned to you or you already know about) but either way, the link to that survey is right here: http://www.ihaveuc.com/prednisone-prednisolone-use-side-effects-survey-results/

    thanks again for sharing Kimberly!

    Aloha,
    -Adam

  2. Tom
    Tom October 2, 2012 at 11:19 pm #

    Hi Kimberley

    Glad to hear you are getting better. I can relate to most of your story especially on the prednisone front. I was first prescribed it after my first colonoscopy in june, a 40mg dose reducing by 5mg every week. Got down to 20mg and a huge flare erupted. Couldnt control it by increasing the dose so ended up in hospital for 11 days. Eventually something called Ciclosporin got me into remission in hospital and then i left with a 25 tablet a day plan.

    I was told at the time that the next step if i were to flare again would be infliximab which i believe is like remicade

    im suffering from the side affects so badly at the minute that im considering elective surgery just to get it over and done with. Im only 23 but am so tired i cant work a full day due to fatigue caused by the 6mp im taking and have high blood pressure Caused by the steroids and im startkng to feel the rumblings of a flare coming on as i drop my steroids to that elusive 20mg.

    I hope you get back to normal soon and i wish you good luck with the baby plans!

    Keep us posted on the drug front

    Tom

  3. Lisa OH
    Lisa October 3, 2012 at 9:56 am #

    Hi Kimberly. I can completely relate to a severe flare coming out of nowhere (you can read the whole gory story here: http://lisakapp.blogspot.com/ ). In Dec 2011 I was diagnosed w/UC and it got severe FAST!! I was on all the drugs – prednisone is evil, evil, evil. And it didn’t work for me all that well. I was also on Remecaid, which didn’t work either, so surgery was my final option as my colon became toxic w/in 2 mos of diagnosis. I am currently healing from the 2nd of 3 jpouch surgeries. The last one will be in late Nov sometime. I have to say, I am SO SO SO SO glad that yucky colon is gone and all of those crazy meds are out of my system. I feel fantastic. I’m glad the Remecaid is working for you. I have heard great things about it from pple who have experienced success with it. I hope you continue to stay healthy!! Tom, I’m happy to answer any questions you have about surgery. I have absolutely no regrets so far!!

    Sending healing thoughts to you:)

    Lisa

  4. Richele
    Richele October 3, 2012 at 10:32 am #

    Hi Kimberly!
    I’m sorry you are so sicky right now :( You know, the thing that sucks about all of this, is that there isn’t a cure all. What works for one person, might now work for another. Some people swear by having their colon yanked…I, however am not a candidate for Jpouch surgery and am just not ready to give up on my good ol colon at my young age. Diet seems to be the best route for me. But man, that freakin prednisone makes it darned difficult to make healthy food choices. I remember all too well. It’s the most depressing drug I’ve ever been on…besides Imuran. Yuck.
    Currently I am flaring too. And I am desperate to get back on track. But man, it’s so much easier and quicker to flare than it is to recover, right?? Sometimes it takes forever, only to start slipping back again. *sigh*
    I’m about to go crazy on some probiotics, low residue diet, SCD (there are links to this diet on this website)…I’ve gotta do something, cos Remicade terrifies me, Asacol and Colazol don’t work, and I’ve developed an allergy to steroids.
    So there you have it. Geez! I hope you find a solution to your pain soon. And can get on with making another baby part of your “happily ever after” story.
    Best to you,
    Richele

  5. Bev October 3, 2012 at 4:22 pm #

    Wow, Kimberly, you have definitely tried all the drugs in the UC carousel!

    I, too, am so afraid of those immune supressors. Our (we Ucers) immune systems seem to be more over active than people without auto immune diseases, so I guess those drugs are given to us to slow the immune system down. It just doesn’t seem right, does it? I had an awful reaction to pred so I was only on it about 4 days. I did refuse to go on the imuran and renmicade when the specialist suggested that I should. She was not amused….

    I hope I never have to. Somehow, using a good probiotic and L-glutamine, I got myself into remission. I cross my fingers every single day that I can retain it. I am currently on no meds at all.

    The very best of luck to you, whatever you choose!

  6. joanna October 3, 2012 at 5:41 pm #

    i know how you feel girl! last year when i was in the hospital with my first flare, the doctor put me on cipro, flagyl, canasa, prednisone, 6mp, remicade, prilosec, and zofran. to this day, i have no idea what was helping because i was on too many things at once. i feel doctors take advantage of patients when they are at their weakest. it’s not good ethics in my opinion.

    i hope you will be able to get off of these drugs eventually. if remicade helps, stick to it. remicade failed me after 5 infusions, so now i am trying paleo/scd and different supplements. i’m still on 6mp which has also stopped working. my doctor just likes to feel like she’s doing something.

  7. KimberlyHI
    Kimberly October 4, 2012 at 7:23 am #

    Thanks for all your comments! It’s nice to feel a little less alone in this battle. I just got my second dose of Remicade on tuesday. OK so far, I do feel like I’m catching a cold or maybe getting allergies, a little stuffy and sore throat. I am feeling much much better as for the flare though, it has become more manageable, so I can actually leave the house! :)
    Lisa, I think surgery is long away for me I hope, but it seems scary! I guess when I think of having my colon removed and whatnot I think that I will not function normally again! But it sounds like you are doing really well, and maybe it would be better than taking all these drugs all the time! Tom, infliximab and remicade are the same, and really I was pretty hesitant to be on it. I don’t want to be on it long term like the doctor says I should be. And they have me on remicade and imuran so really which one is working? The side effects of all this stuff is so horrible!
    It seems like we all are able to control our flares for awhile then suddenly our meds stop working.

    • Bev October 4, 2012 at 7:44 am #

      That’s right Kimberly. The meds all seem to eventually stop working. Then, our only choice left seems to be colon removal?! Does this not seem right to anyone else but me? Does colon removal always have to happen eventually?

      I wish we all knew the future, I really do. I get freaked out when I hear person after person recite the same M.O.! First, we get diagnosed…next we try every drug out there, because they all stop working…then, finally, it’s into surgery…is the script prewritten for us already and nobody wants to tell us? Is the writing always on the wall? OR, can we help ourselves, naturally, without all the harsh chemicals that are in the drugs?

      Does it depend on how severely damaged our colon is? Or, just how severely damaged it is at the time taht nothing else ‘medically’ is working anymore? The colon seems to heal (go into remission) and flare (become inflamed with ulcers). What if surgery is performed before we’ve tried to heal it one last time, naturally?

      So many freakin’ questions. Nobody has the answers. It weighs very heavy on the mind. I just had to vent on this…

      • Tom
        Tom October 4, 2012 at 7:58 am #

        Yes the meds do seem to stop working

        Ive been told and have confirmed this by way of my own research that since being hospitalised and treated with ciclosporin, my chance of needing colectomy in the next 12 months is 50%.

        Now given these awful odds is it worth trying the drugs, experiencing alot of nasty side affects, possibly developing hypertension (got it already, thanks pred!), pneumonia, renal failure, liver problems, fat face, osteoperosis, all for a measly 50% chance of keeping your colon! I dont even really like my colon that much to be honest!

        So my question is taking into consideration the above, would it not be better to opt for surgery when healthy and not in a flare than risk the complications associated with emergency colectomy and possibly the other drug unduced afflictions?

        Thats what im battling with at the minute in my head.

        Kimberley – glad you are now well enough to leave the house. Keep us posted!

        • Bev October 4, 2012 at 8:12 am #

          Tom, I hear that.

          So very much to ponder.

  8. Richele
    Richele October 4, 2012 at 8:38 am #

    I like what Joanna said…”my doctor just likes to feel like she’s doing something.” That’s it in a nutshell, this is what our Dr’s are trained to do. They are not trying to ‘cure’ us, they are simply putting a band-aid (awful meds) on our symptoms. Which is why I feel there must be a way to heal naturally!

    • joanna October 4, 2012 at 10:07 am #

      totally, richele! at my last appointment which was monday, i told my doctor that 6mp has been doing nothing and i’ve been on it 2 months this time. my doctor said “well, let’s just keep you on it anyway. i know it won’t give you remission, but i can’t just have you doing nothing.”

      wtf? so basically all of my diet changes and supplements are considered nothing to doctors? seems like it. so let’s keep taking a poison to make my liver sick again (did this the first time i was on 6mp). basically, i’m just waiting for high liver enzymes again and then i’ll have to stop it. so frustrating!

  9. Baker
    Baker October 4, 2012 at 12:14 pm #

    Kimberly, I’m a new poster here, I’m hoping Adam gets my first (and very wordy) post up soon. I’m one week away from my first J-pouch surgery. I both very nervous and excited. I was on Remicade for just over 2 years and at first it was wonderful but then like everything else with UC is started to lose effectiveness and I became steroid dependent again, with all the ugly side effects. I’ve never been to the ER, even during bad flares, so I consider myself lucky. I do sympathize with you and the other posters regarding is colon removal a forgone conclusion for many people with this disease?

    I haven’t posted it yet but I plan on writing up my experience visiting the Mayo Clinic in February of this year for my 3rd opinion and testing. I’ll try to get it up this weekend. They did two tests to try and make sure that my disease was indeed UC and to see if I had any risk of Crohn’s. In particular since I was contemplating surgery. They did and I’m quoting here “An IBD serologic panel showed a positive neutrofil-specific antibody (ANCA) and a positive IgA ASCA antibody”. Unfortunately I was positive and they told me I am at higher risk for Crohn’s like symptoms even after my j-pouch. They said all patients are around 5%, in their estimate with the positive test I would be at 10-15% chance. Even with the fact I have never shown any signs of inflammation or ulceration in my small intestine during multiple colonoscopies.

    They also did “An MRI enterograhy showed left-sided ulcerative colitis, and there was no evidence for active inflammation in the small bowel.” That was a new test for me as well.

    I am nervous about going through the J-Pouch surgery only to develop Crohn’s like symptoms but at this point (you can read my full story) it is worth the risk for me.

    Good luck!

    • KimberlyHI
      Kimberly October 5, 2012 at 12:12 am #

      Hi Baker, I will keep an eye out for your story! Surgery is so scary to think about. I hope it goes well for you! Well I will be in your boat too if I have surgery, I too have a chance of having Crohns but it seems my flares are normally in the UC area so it’s hard for the doctors to say. I think I just had my 4th colonoscopy and it was the first one where they saw an ulcer in the small intestines. What a drag huh?

  10. KimberlyHI
    Kimberly October 5, 2012 at 12:18 am #

    Richelle and Joanna, I agree, same boat here! Here I know the prednizone is doing nothing, the Entocort is doing nothing, hence why I now am taking imuran and remicade, but they want me to stay on the steroids anyway. Apparently they think it is helping in some way even though I was not getting any better until I started the imuran and remicade.
    Well I am now in process of switching GI docs so maybe I will get a second opinion in and see what the new doc thinks. It’s like I really want to see what will happen if I am just on remicade or something, I really feel all the other meds are just worthless at this point, but I guess I feel obligated to take them because the doctor says and I sure as heck don’t want my flare to go back to where it was! Ugh!

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