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

My Bathroom Has Became My Living Room And It’s Just Not Fair

Introduction:

I was diagnosed with colitis in July of 2012. My serious symptoms started in January of this year. We all thought it was a stomach virus because my symptoms came and left over a period of a few months. I was referred to a GI specialist who recommended a flexible sigmoidoscopy. It revealed the UC.

Some More about me:

I am a 29 year old single parent. I love to cook and eat so this UC is really taking a toll on me. Reading takes up most of my time. I’d rather be at home than out and about so that is the only thing that is on my side in dealing with this disease.

Colitis Symptoms I’ve Dealt With:

The symptoms that I have experienced so far are stomach aches, cramps, nausea, fatigue, headache, muscle aches, joint aches, gas, and bloody diarrhea.

My Colitis:


SOME DAYS ARE BETTER THAN OTHERS.
Good days are manageable but the bad days are sometimes indescribable. The bad days have me running to the bathroom at least 10 times a day and about 5 times during the night when I should be asleep. I can feel when it’s time for me to go during the night and I try to just go back to sleep and ignore it but that doesn’t work at all. I haven’t had any severe abdominal pains since I was diagnosed in July. But prior to that my pains would get so unbearable that I would have to visit the ER for pain relief. At the time I wasn’t officially diagnosed yet so the doctors at the ER didn’t really know how to treat it.

The pains would get so bad that I could do nothing but cry out. I was on Asacol and Prednisone for about 6 weeks after my diagnosis. It worked really well and sent me into remission. After that I was placed on Lialda and it completely reversed it. My symptoms returned with a vengeance. I had to have blood work done to check my blood levels. It showed that they were dangerously low and I was put on pure iron tablets and vitamin C to help the iron absorb. I am so sick of going through this. I am still learning about UC so it’s kind of hard to explain it to someone. I just tell them to google it. If I have plans to go out somewhere the only way to be sure I won’t have to run to the bathroom is if I don’t eat much. Other than the constant bloody diarrhea and fatigue, the worse part is missing out on important engagements. I have been late dropping my son off at school a few times because I was unable to leave my toilet. One of my biggest concerns is that I will miss out on my son’s sporting events because I am afraid of leaving my bathroom. It’s not fair and I can’t wait til they find a cure.

Medications:

In my opinion, the Asacol and Prednisone mix has worked the best for me. They say that Prednisone is not good to take for a long period of time, but in my past experience with it, more is better than a little bit. I read somewhere that red meat can aggravate a flare up so lately I have been avoiding it.

written by “Single Parent”

submitted in the colitis venting area




25 Responses to My Bathroom Has Became My Living Room And It’s Just Not Fair

  1. bev December 4, 2012 at 2:58 pm #

    Hi,

    My UC got worse on lialda (asacol) as well. I was on it for 13 years straight and teh doctor told me I felt so sick because of the UC. WRONG! I started a good 50 billion strain probiotic about 10 months ago, and the symtoms began to disappear. After about a month, I went right off of the drug, and I have never felt better. I’m not sure doctors know what they are doing in ‘treating’ this ‘disease’. I have healed my colon with probiotics and L-glutamine! I have been off meds for 10 months andf feeling great.

    It took me a long time with this disease to try something other than what the doctors were prescribing, because I thought they knew what they were doing. I knew nothing about UC so I just dod what I was told. I wish I had not waited so long to try probiotics. The doctors told me they wouldn’t help. they also said that I would have to stay on meds forever…what a crock!

    Don’t be afraid to take charge of your own health. Asacol and Lialda can actually make UC alot worse in some people. I was one of them!

    Cheers, and welcome to the site. It saved my life!! So may people talked about probiotics on here, that I eventually tried them! Life is so good now…no more urgency, bleeding, anemia, pain, etc…you should try them…they cannot hurt you!!

    Bev

    • joanna December 4, 2012 at 4:28 pm #

      definitely agree about the lialda! it made my proctitis go into full blown pancolitis. my doctor said it was impossible and it was just my disease progressing. i wish i had never taken it because i wouldn’t be as sick as i am now.

    • Single Parent December 5, 2012 at 9:50 am #

      I am new to this. What exactly are probiotics and where can I get them? Before I was diagnosed I used to eat Activia yogurt.

      • bev December 5, 2012 at 11:16 am #

        I hear that! I had no idea what probiotics were either than in yogurt for the longest time. There is not enough of them in yogurt to heal our ‘condition’, unfortunately.

        You have to buy probiotics at a vitamin/health store. You should get at least a 50 billion strain one. You take one capsule first thing in the am on an empty stomach with water.

        I take ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. They are amazing! My symptoms all disappeared within a few weeks, except for a bit of bleeding. Then, I was recommended fermented L-glutamine powder, which I mix with a bit of juice every day, and the bleeding also disappeared in two days! I was able to discontinue ALL meds and am now in remission and med free!!! 10 months and counting….after 15 years of no real remission on the meds!!

        Easy!

        Cheers, and get on the as soon as you can. It may take a month, but you will feel the difference!!

        • Single Parent December 5, 2012 at 11:51 am #

          Thanks!!

  2. KK-SCDer December 4, 2012 at 3:21 pm #

    In addition to probiotics, try modifying your diet. Try the Specific Carbohydrate Diet, GAPS Diet or Paleo Diet (I recommend SCD). All of these meds are not the way to go here. I’m sorry to say that eventually they all stop working. Your body stops responding to them. Probiotics and diet are the two most important things in managing IBD. Also consider looking into fecal transplant therapy and Low Dose Naltrexone as possible alternative medications. Personally, I am a strong advocate of the Specific Carbohydrate Diet — the goal of the diet is to starve out the bad bacteria in your gut and replenish it with good bacteria (this is where the probiotics come in). I went from 5-6 bloody BMs/day to 2-3 formed BMs/day with no pain in about 2 months. Letting your body heal naturally is a long process so don’t expect immediate results. Whatever you do, do not settle for these steriods and immunosuppresant drugs as your only means of improvement. Best wishes!

    • joanna December 4, 2012 at 4:30 pm #

      kk, did you take supplements as well as do scd/paleo? i’ve been doing it for 4 months and am still pretty sick. i just got out of the hospital because i needed 2 blood transfusions. my pain is just so bad and i’m at a loss of what to do. i plan on asking for humira at my next GI appointment because i’ll take the risk of those side effects just to feel better. i think i’ve tried every supplement there is as well as all the meds (humira is my last one).

      • KK-SCDer December 4, 2012 at 7:35 pm #

        Joanna,

        No shame in trying Humira, and hopefully it helps you. However, take the time that you are on Humira to continue with SCD. I am not taking any supplements, but I am extremely cautious with the diet. I am going very slowly on the allowed foods — one at a time to see if there is a response. I’ve found that eating the same thing several days in a row causes problems. What are you eating now? What’s your daily routine? Are you eating the chicken soup? Did you do the intro diet? SCD is a very bumpy road. I am nowhere where I want to be, so I definitely understand your frustration, but I think healing our bodies is a process. We have been sick for years, after all! Also, you should join the BTVC-SCD yahoo group. There are a lot of knowledgeable people on there who can help you out.

        • joanna December 5, 2012 at 1:16 pm #

          thanks, kk. my usual day consists of chicken bone broth, then a protein like roast chicken, salmon, or ground beef cooked in bacon fat/coconut oil. i usually put EVOO on top of this. i have roasted on zucchini on the side or some sauteed apples. dinner is usually the same thing. i just eat two meals a day and maybe a snack midday of kombucha. i don’t have much of an appetite right now. i did the intro diet for 4 days. it was very hard for me and i felt like crap- just terrible brain fog, dizziness, and headaches. i wish i would’ve noticed a difference in UC symptoms but i didn’t.

          my doc has been pushing humira for about 4 months now and i kept saying “oh, no, my diet will kick in eventually.” i think i’m just one of those UC patients that natural remedies don’t work great for. i was taking remicade for 6 months and that stopped working so i assume the same will happen for the humira. maybe by the time that happens my colon will be healed a little better. i just need some relief since i haven’t been able to do things/work since february.

          • KK-SCDer December 5, 2012 at 1:33 pm #

            Hi Joanna,

            One of the things that I noticed is that it is the little extra things that I do with food that often cause problems. For instance, are you peeling your zucchini and apples? One of the first ways that you should try apples is in the form of applesauce. Have you tried that? Also, I was adding coconut oil to my ground beef patties for about 5 months before I took it out one time and felt so much better. Also, by kombucha do you mean the tea? Because that is illegal on SCD. Perhaps roasted veggies don’t work for you. You may need to boil them and mash them up. All I’m saying is that everyone needs to experiment. Just because something is SCD legal, doesn’t mean it works for you. You should join the BTVC-SCD yahoo group. Also, it’s important to remember that, unfortunately, going off the diet is not going to magically make you feel better. So if you need to go on Humira and that makes you feel better, then by all means. But that doesn’t mean you should quit the diet. All of these meds just mask the symptoms and eventually you’ll probably be off Humira. Let the diet do something for you in the meantime. Best wishes! I’m sorry you aren’t feeling better and I wish you the very best.

    • Single Parent December 5, 2012 at 10:08 am #

      KK, my GI has informed me that if my blood levels don’t return to normal I will have to have a blood transfusion. He also mentioned a type of autoimmune steroid that is a possibility. Just the thought of being put on a medicine that weakens my immune system freaks me out. All I vision is walking around with a mask on my face and not being able to touch anything or anyone. Then he tells me that after I finish that steroid I will have to take another med to help rebuild my immune system back up. What I wanna ask you is they say that what you eat doesn’t effect UC. So how does that SCD diet work? I’m confused…..

      • KK-SCDer December 5, 2012 at 11:28 am #

        They do say that why you eat doesn’t affect UC. Step back for a moment and think about this… the part of your body responsible for processing food is damaged. It is not processing food correctly. Doesn’t it make sense that if you put in food which is already processed in the way that your body requires it would not further damage your body? (I don’t mean factory processed here, obviously). The theory of the Specific Carbohydrate Diet is that people with IBD cannot digest di- and poly-saccharides. Bad bacteria in our gut feed on these undigested sugars and overgrow, causing an imbalance of bad bacteria over good bacteria. The goal of SCD is to starve out the bad bacteria and re-populate the digestive tract with good bacteria. Here’s how I see things. The medical people are funded by the drug companies to prescribe their product. There is nobody who will make money on saying that diet is the cure, so no research is done on it. I decided some time ago that I can either trust the doctors, who tell me that there is no cure and I will be on meds my whole life, and these meds don’t even make me feel better, or I can take my health into my own hands. Yes, the medical profession says diet does not work. They have been taught this — its not their fault. There is simply nobody who would make a profit from a dietary change being the cure. Read the book Breaking the Vicious Cycle by Elaine Gotschall about SCD. It changed my life. I want to stress that diet is NOT a quick fix. Do not expect diet to help you in a week or even a year. Healing from years of damage is a long process. But it works.

        • Single Parent December 5, 2012 at 11:56 am #

          Ok your logic makes plenty of sense. Thanks!

  3. PeterNZ December 4, 2012 at 3:52 pm #

    try methotrexate?

  4. Pradeep December 5, 2012 at 12:56 am #

    Hi

    For those who are on probiotics & SCD diet.Does it provide symptoms relief only or your Colon is getting healed. What does colonoscopy shows?. Got to know that Glenmark & Sanofi have commenced 2nd phase trial for new medicine for IBD(GBR 500 molecule). Hope it provides some relief.

  5. Jen From UK
    Jen December 5, 2012 at 2:53 pm #

    I am awaiting the btvc book and am seriously going to start it as soon as I can! I’m sick of my bathroom too :-) I am new to the site and like you got some great advice, hope you get sorted soon x

    • KK-SCDer December 5, 2012 at 4:10 pm #

      That’s excellent news Jen! I wish you luck. There are great resources on the internet for those on SCD — check out scdlifestyle.com, pecanbread.com, and the BTVC-SCD yahoo group. I just want to caution you: please don’t expect to be cured in a few months. It’s a really long and slow process, with many many ups and downs. But you will get there! Best of luck!

  6. Jen From UK
    Jen December 5, 2012 at 10:45 pm #

    Thanks kk-scder, I’ve been properly flaring now since may and none of the drugs have instantly helped though pred did stop the bleeding within a week or so. I just want more good than bad days and am in for the long haul ;-) got to be better than living of white meat/fish, potato and carrot. With the odd banana and avocado and yogurt! I miss veg the most and am looking forward to eating salad again! I know there’s no quick fix.

    Single parent- hope you’re doing ok today?! I find the morning school run the most stressful thing ever… Will I be able to leave the bathroom in time today?!? Thinking of you x

  7. Lisa OH
    Lisa Kapp December 6, 2012 at 2:37 pm #

    You’re right it’s NOT fair. UC is simply horrible. Mine did not respond to any drugs, became toxic, so out it came. I’m waiting on the last of 3-step jpouch surgery. Anyhow, I DO believe that food has something to do with it. Spicy, acidic foods, caffiene and sugar always sent me over the edge. Also, probiotics are really helpful. I hope you heal quickly from this flare. My thoughts are with you:)
    Lisa

  8. Single Parent December 29, 2012 at 4:54 pm #

    Hello guys! Well so much has changed since my last time here. First of all let me start of by saying that I am still in my flare up. My blood levels are still dropping. My meds have been changed to 3 Lialda a day instead of 2. My prednisone has been upped from 20mg to 40mg a day. I am still on the iron/vitamin C twice a day. The only difference is that now I am taking 50mg of Imuran a day now also. This was changed just last week. The side effects have me feeling like I am going crazy. My throat hurts and I don’t know if it is a side effect or just the beginning of a cold. I feel crappy when I take the Imuran. The nausea has me lying in bed most of the time after I take it. My GI told me to take Dramamine for the nausea and if it doesn’t work to let him know and he will call me in some Phenergan. I’m not too happy about taking Phenergan because it makes you sleepy and I am already tired and fatigue so I don’t really need any help in that department. I have to return for blood work next week, then again 2 weeks after that, and back to the GI the day after that last lab visit. If my blood levels are still low I have to have a blood transfusion. The thought of that happening scares me but I guess I don’t really have much of a choice. I just wanted to let you all know what was going on with me now :(

    • bev December 29, 2012 at 5:47 pm #

      Oh boy Single Parent, how I feel for you! Those damned drugs…they are so nasty. I wish you did not have to take them. Please keep us posted, and, even tho it’s hard, try to stay positive.

      I’m so sorry to hear about all of this.

      Cheers…we are here for you:)

      • Single Parent December 29, 2012 at 11:04 pm #

        Thanks Bev! I am trying to stay positive through all of this because I have a 5 year old son to be here for but it is becoming so difficult to do that. He has grown accustomed to me spending so much time in the bathroom. He even knocks on the bathroom door and asks me if I am ok O:-) I am a Christian so I know and believe that God will heal me and make everything better but yet and still I am tired of going through this. Each day is a mystery to me. I never know how I feel tomorrow until I wake up that day. Sometimes I can go by the night before. If I wake up through the night going to the bathroom then chances are tomorrow will not be so good. I still hold on to my faith and believe this flare up will eventually end. I will be the happiest person in the world when ever it does~X(

        • bev December 30, 2012 at 8:09 am #

          I am with you…UC does make even the simple things in life so very difficult at times. I am so fortunate now that my son is an adult. Luckily, I did not have UC when I was raising him…that I cannot even imagine! I wasn’t diagnosed until he was about 19. He had already moved out thank goodness.

          That which does not ‘kill’ us supposedly makes us stronger? Geez…I’m not so sure!

          Cheers:)

  9. Single Parent January 1, 2013 at 3:00 am #

    I am going to try probiotics. That is the next “to do” thing on my list. At this point what else do I have to loose?

    • bev January 1, 2013 at 9:36 am #

      Single Parent…probiotics were the BEST thing I ever did for UC. Take them first thing in the morning, on an empty stomach with water…and don’t eat for at least half an hour.

      I think it matters WHEN and HOW you take them.

      I have been in remission for 11 months!

      The only thing symptom that lingered was the bleeding. I had to add L-glutamine to get rid of that. You may not have to, but if the bleeding doesn’t stop, try it!

      Please keep us all posted on how you get on.

      Cheers,
      Bev:)

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