And the Journey Continues

laura-from-torontoIntroduction:

Hi, my name is Laura and I live in Toronto, Ontario. I’ve had UC for 15 years. I enjoy running, cycling and yoga and love to cook.

My Colitis Story:

I was in my third year of University when I first filled the toilet bowl with blood. I was pretty shocked by it and scared as hell. My GP told me that it was most likely stress and possibly hemorrhoids. I was prescribed some suppositories for my ‘ hemorrhoids’ and told to relax a little. After losing 15 pounds and numerous attempt at trying to get a proper stool sample (at that point I kept waiting for a solid) I was finally referred to a Gastroenterologist. One Sigmoidoscopy later, I was told I had Ulcerative Colitis. I had never even heard of it.

In the beginning, I was prescribed Asacol. I remember that I had to take 8 pills a day. It gave me terrible headaches and crazy gas. I started taking Advil and some form of anit-gas pill to alleviate both. A few months later I was admitted into the hospital. Not for my UC but for pancreatitis. Too much meds. It was very painful, but different from our UC cramps and pain. Two weeks later I left the hospital and stopped taking Asacol and stopped seeing my doctor. My decision. I like to think of this as my UC repression period. Not one of my best choices.

Fast forward 5 years. I’ve pretty much bled the entire time. Not filling the bowl, but always there along with my good friend mucus. My Iron levels and hemoglobin always stayed at safe levels. I had pretty much convinced myself that this was my new normal. Then the joint pain started. Looking back, it’s amazing to me that this is what finally got me to go back to my GI. Not the blood every day. If only I had a time machine.

After a colonoscopy, it was determined that my ulcerative colitis had gotten worse and inhabited more space on the left side of my colon, several inches. I was put on Sulphasalazine, 4 pills a day, and instructed to use a Cortifoam steroid. I pretty much lived this way for the next few years, but again, the bleeding never totally stopped. I had come to think it was okay to bleed a little and I was pretty lucky with the severity of my disease.

In July of 2009, my husband had a work accident. He suffered 2nd and 3rd degree burns to his face, arms and hands. It was an extremely stressful time. He was in the burn unit for a couple weeks and then had to recover at home for 3 months. Thankfully, he fully recovered with scarring to just his arms and a bit on his ears. Watching him go through that experience was the hardest thing I have ever had to do and I guess it manifested in a severe flare. December 31 (That’s right, New Year’s Eve) I was admitted into the hospital for what was the beginning of my 5 week stay. A new nightmare to replace the one I just went through.

I had never had a severe flare, so I handled it all wrong.

 

I waited way too long to go to the hospital.

 

I was going to the bathroom anywhere from 20-30 times a day. I had lost 15 pounds at this point and I couldn’t sleep in my own bed because I needed to be closer to the toilet. I thought I could handle it. My husband tried to get me to go, but I resisted until I could resist no longer. In emergency, they told me one more day and I would have been dead. They started pumping me with fluids. Everything was dangerously low, potassium, sodium, magnesium….I was completely depleted. I was put on IV steroids. They seemed to work at first but then both my husband and I caught the Norwalk virus. It was going around the hospital. Things took a turn for the worse. I dropped down to 94 pounds, and had lost so much blood that I needed my first blood transfusion. Once we filled up the tank I was told it was surgery or Remicade. For me it was a pretty easy decision. Remicade made me well enough to get out of the hospital. The thing with Remicade though, was that after I had weaned off the Prednisone I started getting infusion reactions. You name it, I got it. Not being able to breath (super scary), freezing to the point of uncontrollable teeth chattering and body shaking, itchy rash all over my body, and back spasms where I visibly convulsed in my chair. . I became an all day infusion with infusions of Solu-cortef and benedryl before hand to avoid the reactions. This worked well, except sometimes the benedryl would make me dry heave and then they would give my IV gravol. I was pretty much in a fog all day. The night of the infusion my muscles would ache all over.

In June of 2010 I received my second blood transfusion. I depleted all of my Iron stores from the flare so any blood I continued to lose was not being replaced. I started losing my hair. In the shower as I washed it, it just kept coming out. Luckily I have pretty thick hair, but by the end, my pony tail was about half the size. Around the front, I could see spots where there were little pockets of baldness. At this point I started getting Iron Injections. These bad boys have left me with permanent staining on both of my buttocks. My everyday reminder I guess.

In Feb 2011, I was hospitalized again.

This time, I was smarter

and went to the hospital

in the early stages

and therefore only had a one week stay.

 

It was determined through blood work that I metabolised the Remicade very quickly, so we double the dose. While in hospital, I was on IV steroids, then back on Prednisone again.

By August of 2011, I was experiencing the worst joint pain to date. It was everywhere. In my jaw, shoulders, elbows, wrists, fingers, right hip, left knee and both feet. I could barely walk in the morning or evening the pain was so bad. I had to wash my hair right after work since my wrist wrists were useless early and late. After a going to the bathroom in the morning I had to go into the shower since I couldn’t wipe properly. Ridiculous. It would start 2 weeks after my Remicade infusion and last until I was infused again. I was on the 4 week infusion cycle. I went to my GI when I couldn’t take it anymore and he put me on a 10 day Prednisone cycle to get me through. I did this every month again and again until December. I knew it was supposed to be a one time thing but when the pain started I couldn’t not take the Prednisone. Suffice it to say, my GI was not happy. In hindsight, I think I was suffering from serum sickness.

In December 2011, I stopped Remicade and started Humira. It’s early, but my joint pain has stopped. It so great to have the use of my whole body and be able to exercise and sleep properly again. Unfortunately, it doesn’t seem to be doing a great job in stopping me from bleeding. I’ve just started the SCD diet and am 8 days in. I am really hopeful that this will be the difference for me . I’ve always believed that diet played a huge part and have always been super clean in my eating. Fingers crossed this is the turning point. I’ll keep you posted.

written by Laura

submitted in the Colitis Venting Area




24 Responses to And the Journey Continues

  1. Adam
    Adam February 2, 2012 at 2:43 pm #

    Hi Laura,

    I think you are an AMAZING PERSON!

    It is incredible to hear all that you have been through in the past 15 years with this disease, and it’s even more amazing to know that you are still fighting it out, and I’m sure you’re going to win in the long run.

    That’s great news that you are seeing some relief from the joint pains with the Humira. I have a good friend who is also using Humira for his joint pains(he doesn’t have UC) and he’s been on it for almost three years with great success.

    If you have not really dove deep with diet so far, who knows, you very well could be added to the list of UC’ers who has a good experience with that too. Either way, I really wish you the best, you’ve been through so much.

    Best of luck to your husband too, that is really great news that he reovered so well from the burns.

    Kindest regards to you,
    Adam

    • Laura from Toronto
      Laura February 2, 2012 at 5:40 pm #

      Thanks Adam!
      I’m happy to tell you I am 12 days in now and I had a movement without blood!! Since you have been on the scd diet, I’m sure you remember that feeling. I was so happy. I had one after with a little blood, so it’s not perfect but a definite improvement. Huge improvement. I was disappointed at first because after the first week, I had not really seen any change, but this site, and the positive stories relating to it helped me stay the course. Now I have all the motivation I need to stay on it. I have been extremely diligent with it, followed the into for 5 whole days, and am still being very cautious with the food I introduce. It does get easier.
      This is such a wicked website. You rock.
      Laura
      p.s. I think I am experiencing side effects with the Humira, next goal, get off!

      • Adam
        Adam February 2, 2012 at 9:01 pm #

        Yo Laura,

        GREAT TO hear! That’s awesome the symptoms getting better!!! Made my day!

        Also, I just did a check, and you I’m pretty sure are the first person to use the word “wicked” on the site. There’s over 3 millions words on the site so you are the official iHaveUC “wicked” UC’er!

        I love it, take care,
        adam

  2. Swirlibra February 2, 2012 at 3:32 pm #

    I’m shocked. I thought my situation was the worst. I wonder if you actually know what parts of your colon has inflammation? I’ve experience the bleeding and pain and all, it really does get to you mentally. I don’t know what else to say, you’ve very lucky. Do keep up with the #spoonie people. It helps a lot to talk. I wonder if you talked to others while you were going through all of this? It sure does help. We can’t always listen to ourselves because we don’t always make the right choices under stressful times!!!! If things get worst for me, I’m thinking of a Jpouch. But i really don’t want one.

    • Laura from Toronto
      Laura February 2, 2012 at 5:59 pm #

      Hey Swirlibra,
      The last number I was told was 24 inches in. My last two scopes though (both done as emergencies), they couldn’t go too far because it was a bit of a war zone in there, and they had to abort the mission. I do know that it is primarily the left side with the beginnings on the right. I was also told that there was a fair amount of scar tissue.
      Yes, it does get to you mentally, but we all have to stay positive, the dark days do not last forever. I’m not sure about you, but I feel as though I have become a better person for having UC. With all the struggles, I have become more tolerant, patient and sympathetic to others. I also have more of an appreciation for the simple things in life.
      I totally agree that it is extremely therapeutic to talk it out. At the worst of times, I kept a lot to myself. Don’t get me wrong, my husband, family, and friends are amazing, and so supportive, but I didn’t really want to talk about some of the gross things that would happen, or let them know about how much pain I was in or how difficult some days were. The hospital for that long stay, and the Remicade infusion clinic were really my first opportunity to talk to others going through the same things. It was so easy to talk about everything, because generally, the others had experienced it as well, or some other version. What med’s are you on? Have you tired the scd diet?
      Laura

  3. Vicki Thomas February 2, 2012 at 4:18 pm #

    Wow – Laura – this is quite incredible. I’m really sorry you’re going through this. It sounds like you’ve done what most of us have done – ignored symptoms, tried to “tough” out a flare, waited too long to go to the hospital, been frustrated with our meds so stopped taking them, etc.
    I do have a friend who was very ill and has managed to keep herself in remission (and even get pregnant) while on SCD. I can email her and ask her if she will chat with you – let me know. Also if you want to join our support group page on Facebook- let me know. It is a private group so we can talk openly without worrying about people outside of the group seeing our comments. I’m on Facebook – Vicki Thomas, Ottawa, Ontario. Let me know.
    I’m sending you some healthy vibes. It is important to know that there is light at the end of the tunnel – this time last year I was recovering from my hospital stay where I was at my physical limit – having waited too long to go (and yes I ignored my husband’s pleas to get me to go to the hospital as well!) – but now I’ve been in a remission for one year. I’m taking only Asacol and luckily I’m handling it okay. So just know that things will get better.
    Sending you a big hug.

    vicki

    • Laura from Toronto
      Laura February 3, 2012 at 12:40 pm #

      Thanks so much Vicki. It’s great to hear that you have been in remission after being so sick. It’s also helpful to hear you’ve tried to “tough” it out as well. I look back and fault myself and think of how silly I was and if only…I guess that’s why it’s so important for the “newbie’s” to be proactive and never get complacent about the disease.
      I will definitely look your group up. I am 35 and would like to start a family, but am so apprehensive about being on the drugs. I still have some runway left so am hoping in a bit of time there can perhaps be a drug free pregnancy in the cards for me.
      big hug back.
      Laura

  4. Maggie February 2, 2012 at 4:28 pm #

    I can’t help it, I weep for you. I am also a UCer, had my worst flare right after Christmas. I recovered in just 2 weeks but it left a mental toll on me, that’s when I found this site. Entocort helped me and now I’m on methotrexate (arthritis) and Asacol. I’m getting headaches from it. I agree with Adam, you are an amazing person. I used to be on Remicade, stopped and started 2x. It really helped my UC but not my arthritis but I had to quit because of the cost. I will be starting Cimzia after my insurance approves it–it’ll be the 4th bioligic I’ve tried. I really hope the diet helps you, you deserve a break!

    • Laura from Toronto
      Laura February 3, 2012 at 12:51 pm #

      Hi Maggie,
      I’m sorry I made you sad. The good news is I am so much better than I was back then, and you will continue to get better too. It’s so tricky with the drugs, sometimes it feels like nothing works, but hang in. I hope everything works out with the Insurance and Cimzia gives you relief where the others have not.
      Laura

  5. Bbalanzd February 2, 2012 at 5:21 pm #

    Hi Laura
    I’m also from TO and it sounds like we were hospitalized at about the same time. I had my permanent ileostomy one year ago, almost to the day. My rectum was removed in October and I just went back to work yesterday for the first time after taking all of 2011 off to heal and get strong. When hospitalized I was given 2 blood transfusions, 2 infusions of Remicade and of course IV steroids to the max. Nothing worked and I continued to deteriorate. Dropped to 99 lbs. Despite all this I considered myself the “healthiest sick person” on the floor. This was my first and only flare so image my shock to hear that surgery was the only option. As I adjusted to the ostomy over those summer months I realized that it was not bad at all. I was thankful I didn’t have to deal with any meds or their side effects. I have some food sensitivities that I manage and I was exercising pretty intensely. I concluded the J pouch would introduce more problems than the few inconveniences the ostomy presented. As it turned out, my surgeon found that my rectum was too inflamed for the J pouch anyways. So no regrets about my choice. The thought of surgery is scary for sure and I realize it’s a last resort. But life with an ostomy has not stopped me from working, exercising and enjoying my family and friends. Good luck to you!
    Bbalanzd

    • Laura from Toronto
      Laura February 3, 2012 at 12:57 pm #

      Thanks Bbalanzd,
      It’s so great that you are happy and healthy again. Surgery is something I never thought I’d have to consider, I think we all have felt that way at one point or another. The hard truth of the matter is that it is always a possibility with this disease. It’s refreshing to hear about your good experience with it. Thanks for sharing.
      Laura

  6. Bev February 2, 2012 at 6:50 pm #

    Laura…You ARE amazing, like Adam said, and I am shocked…like Swirlibra. You have had quite a time. I feel for you, and your story made me cry, like some of the stories on here do.

    It seems that all we can do is hang in and cross our fingers, and wait for some sort of cure to ahppen. I have thought of colon removal, but then I think…what if a cure is found? My colon will be gone. I don’t know why that bothers me, but it does. It’s all so sad sometimes. I think a cure for this is going to be something so simple, like those fecal enemas that I have read about. Natural and simple…just replacing healthy cells from a healthy colon into our damaged ones. No dangerous drugs with all of the awful side effects.

    Anyway, I don’t know what to say other than I am sorry, and I am crossing my fingers for all of us to find lasting relief…

    Bev:)

    • Laura from Toronto
      Laura February 3, 2012 at 1:03 pm #

      Bev, I feel the same way. Something has to change. After being on this site I am starting to think the members of this lovely little online community are going to help each other more than the medical system does. Thanks for your msg.
      Laura

      • Bev February 3, 2012 at 2:21 pm #

        Cheers to that, my friend, cherrs to that!!

        Bev:)

        • Rebeka
          Rebeka February 3, 2012 at 4:54 pm #

          I want to chime in on that one: I also believe that a cure can be found and it will be something natural. The problem is that for the pharma industry there’s no money in cure… there’s no money in simple and natural. There is money in prescribing a month’s supply of Asacol for over $500 though! I also agree that we all help each other more than the medical system does. I feel like my doc is only there to prescribe meds and do the colonoscopies… been let down too much. But not by anything I’ve read and learned on here and from other sources!

          • Bev February 8, 2012 at 10:33 am #

            Yes, Rebekah, yes!! Please chime away!

            I have spent thousands on asacol tablets and enemas, etc. My monthly tab for asacol alone is about $400!

            You should have seen the gastro’s face when I asked to be referred to someone who will actually do fecal bacteriotherapy. And the ‘oh, I don’t know if healthcare or insurance will pay for it’ bullshit… to which I replied, that’s okay…I’LL PAY fot it…how much can a shit shake cost anyways? Us humans can make them everyday, for free, can’t we all???

            Natural IS cheap, and I do not want to think or believe that this is the reason not enough research is done using natural methods.

            I don’t know what else there is to say here….lol…let’s keep demanding what we want and need everynone!!

            Bev:)

  7. Mark February 3, 2012 at 4:20 am #

    Hi Laura:

    Thanks for sharing. I have had UC since 1988 when I was in my last year of college. I have not had as near a tough experience as you and wish you the best. Getting to the doctor as soon as possible is the right choice and has been for me as well. The joint pain is also what sent me back to get more intense treatment for my UC. Having to drag myself across the floor because my hip and knee were so painful I couldn’t stand, unable to grip a piece of paper because my hand and fingers were so sore, were real eye openers.

    I just discovered this site yesterday and am excited to start the diet this weekend and see how things go.

    I am thankful to have found a group that can share and support each other through such difficult problems and scary drugs. I am currently on Imuran and lialda

    Peace,
    Mark

    • Bev February 3, 2012 at 12:48 pm #

      Scary drugs! You said it, Mark…asacol, steroids, imuran, remicade…how are we supposed to really accept putting these horrors into our bodies??

      Anyway, my joint pain is so bad sometimes, I almost can’t believe it, and I can handle alot of pain. It’s everywhere, too…my arms, my knees, my hips, my neck and shoulders…and I have a doctor who doesn’t really believe anything that I tell him is actually related to the ulcerative colitis. I feel likle I am crazy at times, because the doctor just doesn’t want to hear it, or associate it with this disease.

      Sorry…I am venting! I sound so bitter, but I’m really not, I’m truly just frustrated and feel quite hopeless at times…

      Bev:)

      • Rebeka
        Rebeka February 3, 2012 at 4:59 pm #

        I understand, Bev! I don’t really think there is anything wrong with sounding bitter about the way UC is treated by most doctors. You live with so much pain, are such a strong person, docs don’t know. They don’t feel what you feel. I’ve always felt like I knew where things were wrong in my body, where docs had no clue or it took them long to find it.

        • Bev February 8, 2012 at 10:34 am #

          Thank you Rebekah. Thank you.

    • Laura from Toronto
      Laura February 3, 2012 at 1:08 pm #

      Mark, we are on the same page! I want to tell you that I am almost 2 weeks into the diet and have noticed major changes. You should definitely give it try. I followed it to the tee, it was difficult, but well worth it. Don’t be disappointed if you don’t see results right away, it took me until day 11 to see any real change, I know it’s different for everyone, but I was committed for at least a month.
      Good luck!
      Laura

  8. George in Napa February 3, 2012 at 11:33 am #

    Laura…. Hang in there with the SCD diet…. it does help…..A LOT.

    George in Napa

    • Laura from Toronto
      Laura February 3, 2012 at 1:10 pm #

      Thanks George, so far so great!

  9. Nena February 4, 2012 at 9:06 am #

    Hi,
    I am so sorry to hear about your bout with uc. Life is difficult enough and then some affliction hits and changes our lives forever. I will pray for you Laura.
    I was diagnosed over 5 years ago with complete colon uc. I had constant diarhea for two weeks with a fever of 102 that would not resolve with any type of tylenol or motrin. I was in and out of the hospital and told that i just had the flu. I was finally admitted because a chunk (excuse the graphics) of blood was in my stool. I was in the hospital for 4 days and they did a colonoscopy and found that I had uc. I was released and the next day i was having severe pain in my stomach. I had to diagnose myself. The rare part is that the inflammation from my colon spread to my appendicts and I had to have er surgery to get them removed.I was in the hospital for 7 days. This was horrible and devastating to me. Afterwards I was on a round of drugs (steroids colozal) after for about two months my dr. took me off and said i was in remission. I have not had any problems since that time. I did go and get a colonoscopy last year and it came out normal no polyps etc. I am praying that God will heal me.

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