Ulcerative Colitis: A Blessing in Disguise

UC: A blessing in disguise
“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”

– Eleanor Roosevelt

Don’t be fooled by my title – it took months for me to get to the point where I truly felt that my Ulcerative Colitis was actually a blessing and not a curse. Some of you may be nodding your head and know exactly what I’m talking about and others may be saying to yourself, “Is this girl joking? This is the farthest thing from a blessing”.
It was the weekend of finals week during winter quarter my freshman year of college. Finals week never fails to make my anxiety levels skyrocket. So when I started having diarrhea with pain and nausea, I figured I had either A) been really stressed out about my upcoming final exams or B) caught a stomach bug. I didn’t think much of it since it went away within a week. Fall quarter begins of my sophomore year and I start to notice I have bouts of diarrhea, lasting about a week, every few months or so. My family doctor referred me to a GI specialist and ordered a colonoscopy. The results came back completely normal and I was diagnosed with IBS. I went about my life with these random weeks of diarrhea with no pain or discomfort.
Then the blood started. My friends and I went to Las Vegas for my 21st birthday. I remember it perfectly – it was the day after I turned 21 and just had the best lunch buffet a person could possibly ask for after a long night out. I had to go to the bathroom shortly after and noticed blood in my stool. I told my friend and boyfriend about it because it really freaked me out, but neither seemed too concerned. Probably just hemorrhoids. I will never forget the drive home from the airport. I was in the most excruciating pain I had ever been in up to that point and literally thought I was going to poop my pants. My boyfriend and I were on a highway that unfortunately had a long stretch of no rest stops or gas stations. It was to the point where I wanted him to pull off onto a country road so I could go. I was in tears as I was doubled over in pain. My boyfriend became worried and wanted to take me to the hospital, but I said no – my stomach probably just hurts from the Vegas trip. Over the next 8 months I would continue to have on and off weeks of increased diarrhea, but almost always with blood. In May of 2010, my boyfriend and I moved three and a half hours away from home. I came home in early June for a wedding and drastically got worse in the first night I was home. Call it what you want – fate, luck, coincidence – but I know it was God’s perfect timing and plan for me. I had never been to the ER before and to be honest, I think I was scared of finding out that something serious was wrong with me. My Mom took me to the ER and after a rectal exam and blood work, they came in and said “Congratulations! Your blood counts are so low that we can admit you today!!” Thanks? I had a colonoscopy that determined I “probably had UC but showed signs of Crohn’s”. My biopsy was sent to The University of Michigan for a 2nd opinion and they confirmed UC. My GI and the nurses described my colonoscopy as “wicked” and “evil”. I was started on Remicade and IV steroids later that day. After 7 days in the hospital, I was released home, having no idea what to eat, how long it would take for me to feel well again, or what to expect. So naturally I got online and started researching. Word of advice to any newbies: It is good to research the disease, but do not do it so much and read stories that scare the life out of you. I read so much about Remicade and Prednisone, that my Mom and I made the decision to stop them and try all natural treatments and the SCD. While I do believe that some people can take this path and successfully manage their UC, but I am not one of those people. It nearly killed me and it is so important to listen to your body. I had nights where I didn’t know how to describe how I was feeling, other than that I “felt like I was dying”. I was hospitalized again in July and a surgeon, Dr. Klein, came up to talk to me about surgery. I refused. I had only been diagnosed for barely a month and you want to take my colon out? No way. Again, I was released 7 days later with a PICC line and TPN, only to be admitted again a few weeks later in August – this time for 14 days. I agreed to Remicade and Prednisone and promised my GI that I was in it 110%. I was hospitalized yet again in September for 5 days due to a C Diff infection and my steroid dose was bumped back up to 60mg again. By this time, my face was starting to swell, I was losing handfuls of hair, and started to get acne. I was starting to feel better – the Remicade gave me 5 great weeks of “normalcy”. A colonoscopy in December showed numerous polyps. Before even going in for this colonoscopy, my heart was telling me to bring up surgery again. So when I went in that morning, I already had my surgeon picked out and phone number. December 22nd, 2010 I had a protocolectomy, JPouch and temporary loop ileostomy created. It is now 8 weeks later I feel great! My surgeon is hoping that in 4 weeks I will have my takedown surgery, where they reverse the ileostomy and reconnect all the plumbing inside. Thank the Lord that I have a very close friend who had this exact surgery almost 1 year ago by the same surgeon. He has been a wonderful support and coach to me!
No one will ever know the pain that we experience. The long days that felt never ending will always remain in my memory. All the tears and sleepless nights when I cried because I hadn’t slept for more than 4 hours in two days because of the insomnia and countless bathroom trips. The feeling of having no dignity left when the doctors would come in and I’d be standing there crying because my Mom was in the shower at the time (who stayed with me all the time, bless her heart) and I had an accident on the floor while trying to get to the bathroom. All the times I had to press the call button for the nurse to come clean up my mess because I was just too weak to make it up in time to the commode that was not even 2 feet away from me. I used to pray, “Lord, it is okay if you take me tonight. Please put me out of my misery and pain. I have accepted that I could die and I’m fine with it. Death does not scare me. So please, I am begging you to just take me tonight”. I think I said that prayer multiple times throughout the day for a few weeks. The smell of blood that would literally just pour out of me is not a scent I will ever forget. I looked in the mirror and cried until I had no more tears left to cry because I didn’t recognize the person staring back at me, and I’m still not back to my normal looking self. As if it wasn’t hard enough to feel like a thousand knives are stabbing you in the gut, Prednisone had to make me look and feel like a different person. I watched my 5 foot 2, 103 pound petite frame drop down to 79 pounds in two months. I was in denial when 3 doctors told me that I was dying. Death was knocking on my door. One of my sisters came to see me in the hospital the second I was told this, in tears, because she thought she wasn’t going to see me alive again. I am an Aunt to 10 nephews and nieces and the hardest part was trying to hide my pain from them. But they knew I was sick. I didn’t look like the Aunt they always knew. I couldn’t run around, pick them up and swing them around in circles, or do much of anything anymore. It broke my heart when my 4 year old nephew told me that he was scared for me and he didn’t want my PICC line removed because it was “helping me feel better”. I missed 5 out of the 10 kids’ birthdays because I was in the hospital. Those are 5 very special birthdays to me that I will never get back.
So you’re probably wondering how I consider this to be a blessing. Well for starters, it brought me closer to the Lord. My faith and relationship with him is the only thing that got me through all of this. On my weakest days he was always there holding me in his loving arms and has never once failed me. I’m sure many people think I’m crazy when I say this after everything I went through. But he gave me a peace of mind that surpasses all understanding. I give him all of the glory. They say that patience is a virtue. This is a virtue that I’ve acquired that I wouldn’t have without my disease. My faith has been tested and I have only grown stronger in it. My Mom took off 7 months of work to take care of me. She stayed every single night and day while I was in the hospital, with the exception of 2 nights out of 41. I appreciate her more than I ever have and she has become my best friend. She unselfishly devoted her entire life to helping me and God knows I couldn’t have done this without her. I found out who my real friends are and who really cares. Sadly, I lost some friends and was disappointed by people I thought I was close with who just didn’t seem to care like I would care for them in this situation. However, I gained friends and have created friendships that are so meaningful to me. And those friends that were there for me – the ones that loved and supported me through it all – our friendship is even stronger and we appreciate each other more. I have met some wonderful nurses along the way that I will carry in my heart forever. Although I am still in recovery and have a few months after my takedown surgery, my passion for life has become bigger and I have never felt so alive. I have a list of things I want to do when I am able to again. I have more respect for my body now. The human body is a remarkable, resilient, amazing, incredible thing. It can literally adapt to more than you can imagine and they deserve to be taken care of. I am a better person for my Ulcerative Colitis. I danced with death at one point and I know what it feels like to be down to almost nothing. I have experienced humiliation and the feeling of being a burden, yet come out to be a more humble and loving person. I appreciate the small things in life that so many people take for granted every single day. Walking up a stair by myself, sitting up in bed without any help, picking up a child and holding them, crying tears of joy when my blood work results come back normal. I used to live a life where I thought I was invincible. I think that it is human nature for us to expect a healthy life free of complications. The world doesn’t owe us anything and we certainly live a life where we think that as long as we exercise, drink water, take our vitamins, and sleep 8 hours a night, that we will be healthy. This is far from the truth. Our bodies can turn on us and disease doesn’t care how young you are. I like to think that we are special individuals and that God picked us because he knows that we are strong people. I believe that we all get to a point in our life where we start to realize that it could always be worse. This may come gradually or all at once. But once you get there, you will have a sense of well-being and feel blessed to have overcome and endure everything that comes with this disease.

Allyson’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!! You Can Join too, click here for details

10 thoughts on “Ulcerative Colitis: A Blessing in Disguise”

  1. Thank you so much for your post. It was exactly what I needed today. I’m ‘on the mend’ thanks to Remicade but it’s a slower process than any of us like and I needed to remember the good that God is bringing out of this. I really appreciated reading about someone who has had so many similar symptoms and experiences with this disease. I don’t know anyone who has it or understands what it feels like, both physically and emotionally.

  2. Hi Allyson, awesome Colitis story. I’m so happy for you, its really a great happy ending UC story!! Congrats to you and your family.

    I’ve got a quick question, what happened when you tried the SCD dieting program? What made you decide to stop it?

    Best of luck to you in the future, I hope the next step is painless and further gets you back to a normal life!!

  3. hi Allison,
    read you story and felt the positive side of this surgery. my GI is telling me to get it done but somehow am scared as it is complicated major surgery . i am mother of two small kids and to get recovery time of such a long period seems like a big problem for my family. fortunatly you had your mom by your side but my family like my mom sis and bro gave up on me since my last trip to hospital. its too boring a chore for them i guess(lol). my husband is my only hope who is really caring but can’t take off from job.(just venting out.. plz donot mind).how much time exactly it took to recover after your surgery and how it changed your life? are you still on some life long drugs?plz explain post surgery experience if you can. hope its not too much to ask. i wish you speedy recovery.tc.

  4. Thank you for the comments and taking the time to read my novel!

    @ Shauna – How long have you been on Remicade for? It does take a while to work – it took me 4 infusions before I started noticing a difference. Such a long time to wait! If you ever need to talk about things, I am always here. It is hard sometimes because not many people can relate to what we experience.

    @ Adam – I will keep you posted on how my next surgery goes! I have heard that this surgery won’t be anything compared to the first one pain wise – it will just be me adjusting to the using the J pouch. I stopped the SCD program because my symptoms just kept getting worse. I had told myself that once I got it under control, I would try it again, but things obviously didn’t get any better. I have heard a lot of great success stories with it so I was disappointed when I wasn’t noticing improvement and instead was going downhill.

    @ Pernita – I am so sorry to hear that some of your family members haven’t been there for you. It is heartbreaking to feel like they don’t care. What meds are you on right now? I was really scared of surgery at first, but it eventually got to a point where my heart was telling me to do it. You will just know when it is the right time and thing to do. My quality of life wasn’t much. Since I have only had the first surgery, I can only talk about that from experience. I’m not going to lie to you, it was tough. BUT I had to keep telling myself that it was all going to be worth it. All the pain and days feeling like crap would come to an end eventually. My surgeon does the 2nd “takedown” surgery after about 12 weeks post op. So for me, that is in about 3.5 weeks! :D I was in the hospital for 9 days, but had a few tiny complications (lost a lot of blood and some heart issues – nothing too serious though) that put me in ICU for 3 days (which I don’t remember. They do an awesome job at managing pain). The first 2 weeks home I didn’t have much energy, strength, or appetite. Around the 3rd week, I was able to keep foods down and slowly introduce stuff back into my diet. Let me tell you – my first sub with fresh veggies was amazing!!! I can eat so much more now than I ever could with UC. At about 5 weeks into this, I felt great and had more energy than I can remember. The bag is an adjustment, but it is temporary – remember that. Sometimes I wake up now and forget I even have it. I would never want to live with it forever, but in all honesty, it has given me my life back. And I know that if someday I ever have to go back to a permanent ileostomy, it’s not the end of the world. Feel free to email me – eickmeier.7@gmail.com if you ever have any more questions or want me to go more into detail! Best of luck!!

  5. Ally, You are such an amazing person! Your story is so remarkable I was crying while readying it bc I know how amazing you are in person also! You are the best little twin! love you!

  6. Wow, what a great story! My UC is not as bad as a lot of other people on here, but I will admit it’s been hard and discouraging. I’m SO thankful that this website exists. I’m encouraged knowing that, although the road to recovery may be long, it won’t last forever. As I’ve said, a lot of other people here were way worse off than I am and are now living normal lives.
    THANK YOU GUYS for sharing. :)

  7. I know this post is a bit old, but I still wanted to reply anyway. I completely and utterly identified with almost everything that was said in this post, so much so that it made me cry. Coincidentally, I was going through almost the exact same thing (minus the hospital stay and surgery. Although, I almost was hospitalized but managed to bypass it.) at the same time in the year. We even share the same name.

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