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My life

When I was 14 I had a sore on my bum. I thought it was a hemorrhoid and of course as a 14 year old boy I was way too embarrassed to tell anyone. So I did what I thought was right and bought some cream. After months of the cream not working and the pain getting worse I decided I needed something stronger so I purchased myself some suppositories. For another couple months I gave myself suppositories hoping this would go away.

Well while in school one day my pants started to feel wet. I snuck into the bathroom creeping along the wall. There was something leaking out of my “hemorrhoid”. Oh my god I must be a freak I thought; I was so embarrassed I didn’t want anyone to find out. This kept happening for a while it started to get much worse to the point I always left the room last and started wearing longer shirts to hide the wet spots. I hated myself at 14.  I was a freak leaking liquids out of my bum. It started to leak so bad I started to wear my moms maxipads in my underwear. I couldn’t tell anybody – what would they think?

After about 1 year and a half I was scared and it hurt so much I had to tell my mom. It was so hard for me to tell her I thought I had a hemorrhoid and it was leaking. I was afraid to go to school because I was embarrassed of what was happening to me. I avoided any kinds of friendship I was a freak and someone could find out. After I told my mother she took me to a doctor who informed us that is was a fistula and was draining. But there must be an underlying issue that caused it. They first removed the fistula then came the colonoscopies and test after test. I finally was diagnosed with Crohn’s disease – the rest of my high school career went down hill from there.

I didn’t feel well most days and didn’t want anyone to know so I always kept a positive face on. I made it through high school, then into college with flare ups here and there and always trying different medications. After college I needed my first real surgery. I had a hemicolectomy. That went well for a couple years. I took steroids during flare ups and Asacol and Pentasa seemed to keep it at bay. After a couple years things took a turn for the worse. I started Remicade and that worked for a while, then I couldn’t afford it anymore and had to go back on prednisone.

I got married and worked hard my whole life in and out of the hospital flare ups every couple months, maybe once a year at least. I kept going trying different medications. Tried to go back on Remicade with my new health insurance as now I was married and all was great. I ended up going into anaphylactic  shock from the Remicade. I became allergic to it after starting then stopping. Well then came Humira. It worked.

At this point in my late 20’s I I had developed RA and needed the relief. I was getting cortisone shots but could barely stand the pain in my wrists. I still kept working never giving up on my family or myself. The Humira worked wonders for a couple years. I still had flare ups but no surgeries. A good day with Crohn’s consists of tolerable pain and nasaue. I don’t think I ever have a day where I feel normal. Whatever that is. Well suddenly I was having problems again. At 34 I needed an emergency surgery for an obstruction, it was way harder than my first. My age was catching up to me my body did not handle it as well. There where points where I stood looking up the stairs and just broke down crying because I didn’t have it in me to get to the top. I thought they cut my whole body in half, people die form this stuff in movies. Anyways it was hard.

I kept on the Humira and the occasional dose of steroids. Even when I’m well I still have flare ups at least once a year. And deal with it on a daily basis – it’s not something that comes and goes. It’s the monster inside of me that is always there. Now at 39 I’m dealing with another huge flare up. It’s been going on since January it has spread again to my jejunum. It started in my colon, took most of that out. It went to my ileum – removed most of that. Now it’s in my jejunum and preventing me from absorbing things correctly. I currently am on 24 hour IV nutrition at home. I have a pic line in my chest and carry around this little backpack everywhere I go. The CT scans since January and now have not showed any difference in the inflammation. Which says the Humira is not working and neither is the steroid this time.

At this point I don’t know what the doctors want to do. If they don’t try a new medication then I will need it taken out surgically. This is the first time in 25 years that I am actually afraid. I never miss a lot of work; even through the worst pain I will work. This time is different. I can’t work, my body ended up living off of itself because I wasn’t absorbing anything and I lost 12 lbs in a month. For the first time I am going on temporary disability from my job. I feel like I am letting everybody down. Most people don’t understand how hard it is mentally as well as physically to always feel like you’re sick and people deserve better than I can give them. Especially with my family. Some days I am so fatigued from work it takes all I can do to take off my shoes, let alone go outside and play with my kids. Those things eat away at me. I wish I had more left for everybody else. I will never be able to play with my kids the way some dads can. I can’t help my wife around the house the way she deserves. I try not to be negative – like I said I’ve never given up, always tried to stay positive. This time I just want someone to say it’s ok, for once I need someone to support me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • thedancingcrohnie moderator
    10 months ago

    Goodness, what a story. Hearing about what you went through as a child breaks my heart. Your journey has been hard and I hope today you are doing better.

    I know what it’s like to be truly afraid with the condition of your health. I can relate. There are times when you come to a point were it seems like all options are exhausted and that is so so scary.

    Sending you lots of healing vibes. Hoping you are doing well.

    Always dancing,
    Elizabeth (team member)

  • 3 years ago

    Rob, do you know that the thyroid an sugar level problems can make your mood swings very high and very low?

  • 3 years ago

    I feel your pain anguish and your frustration…having three children myself. the oldest is 20. youngest is 10. There have been years that Halloween’s were brought to me in a hospital with children dressed up.

    this past Mother’s Day was in the hospital. theres been Christmases in hospitals.

    and then during periods of remission you can do everything you put your mind to.

    and it’s when I feel my best that I push my every last moment and breath in my body to be the warrior that I know I can be.

    And I have faith in you as I do all people that during your good days just push yourself. please don’t say you can never do something. my fave gym tank top says never say never for a reason.
    Sure right now I can barely walk up the street to get my daughter from school and I feel like I’m walking as if I am 80 years old. however at the end of April I was doing pull-ups and getting ready for a spartan run which Is now on hold til next year and I have faith and determination that im doing it in 2017.

    so your body will heal. and do what you can with your kids and for yourself when you can. Just explain to them that right now daddy is not 100%. Daddy’s maybe 70% but daddy can do certain things and as soon as daddy is back to 100% you will go do The very active things that you long to do with your children and helping your wife and I’m sure that she understands and loves you no matter how much you can help. That’s what family is. Everyone has to help sometimes.

    Sending you positive love and light. Please. Go easy on yourself and honor the light within you. It’s not gone. The pilot light is still there. You’ve got this. Be glad you have a wife. I’m a single mom relying on a wonderful 20 year old daughter. My ten year old is slower to understand moms not able to do things. Like her field trip weds with a two hour bus ride and tons of walking while my new ileostomy fills up 8 oz every hour of liquid. But I’ll make it up to her in quiet time things together. You’ll be ok. They always love u for you dad.

  • melland68
    3 years ago

    Hi Rob,
    I can totally relate. While not exactly the same, we have shared a lot of similar experiences. I’ve had Crohn’s for 20 years and after flares every year or so and failing all medications ( I’m allergic to both Remicade and Humira) I developed several perinatal fistulas.. My Dr put in Seton drains which were a nightmare – diarrhea would pour out of the holes and I had no control. I had to wear depends and didn’t leave the house.
    After several Drs opinions I ended up having surgery to remove the colon and sew up the rectum and I have a permanent ileostomy. After the surgery I had multiple complications, including several abscesses and 3 blood clots. I also developed a strange, rare bacteria that causes abscesses so I’m on antibiotics for a year and blood thinners for the clots for 6 months. I was on TPN Until 2 days ago and they pulled my picc line yesterday. Yay – but I find myself very anxious that the abscesses will return.
    I should be happy but I’m just so tired all the time and I’ve lost 40 lbs – I have no muscle mass left! Oh and I got laid off while on LTD by a call from my boss in the hospital. I know what you mean about needing support – sometimes I just want my mom to come take care of me for a while – it’s exhausting putting on a happy face all the time. I have 2 kids and I feel like such a bad mom when I can’t go to their school events or drive them places.
    I think with time we are both going to get better – and hopefully some new medications will come out that work! Best of luck and I’m right there with you!

  • 3 years ago

    I have never been much of a “sharer”, as far as support groups, etc. I have always been willing to talk with anyone on a one to one badis, but not in a group.
    I joined a different group on Facebook, which I quickly left, because it was basically patients giving medical advice to other patients! Not good!!
    This site is excellent so far. It helps to know we are not alone, even though it can be very lonely. I feel like this group is here for the tight reasons…to share, offer kind support, give tips on things that may help, and just be here.
    We are all, unfortunately, on the same boat, but we can help each other to stay afloat.

  • 3 years ago

    PS: Sorry about the typos!! Needs to get my stylus I guess!

  • Stephanie Huston moderator
    3 years ago

    Good morning, Rob,

    I’d first like to parrot Dana’s sentiment – thank you so much for sharing your heartfelt story with us. We’re lucky to have someone of your experience as a part of our community.

    In fact, we found your story so moving and relatable that we featured it on our homepage as well as our InflammatoryBowelDisease.net Facebook page.

    Your story has received an outcry of support from the community as many have had very similar experiences and feelings but have not be able to put them into words. If you have not yet seen the comments, I encourage you to check them out here: https://www.facebook.com/crohnsdiseasedotcom/posts/975132195938286.

    Your words have touched so many other people managing IBD and inspired many to share their own stories in return. You are never alone with this disease!

    Warmly,
    Stephanie (InflammatoryBowelDisease.net Team Member)

  • author
    3 years ago

    Thank you Stephanie. Normally I have everything under control through thick and thin never wavered. For the first time I feel like I need support more than I can give myself. Its nice to hear others stories and know I’m not alone. In glad to help in any way I can. I also have developed gastroparesis RA hypothyroidism and am hypoglycemic. Also have Gerd. I don’t ever let anything get to me have always worked as a carpenter. This time my body is more stubborn than my mind lol. But for the first time I am willing to accept that I need a break. Talking to others makes me realize that it’s ok for me to take a break.

  • Dana
    3 years ago

    Hi Rob Russell!

    Thank you so much for being a part of our community and sharing your story with us! I am sad to hear about the fear and embarrassment you felt when you were younger, but glad that you were able to find out what was wrong and get help! It sounds like you have been through a lot and it has not been easy at all. I hope it gets better soon and remember you are not alone!

    Please feel free to come back anytime to update us on how you are doing, we would love to hear!

    Stay strong!
    Dana (InflammatoryBowelDisease.net Team)

  • Dana
    3 years ago

    Rob Russell,

    I am so glad that you reached out and found this community! There are many people here that are struggling as well and would love to link with you! Have you checked out our forums page for more opportunities to connect with others? Here is the link: https://inflammatoryboweldisease.net/forums/

    Best,
    Dana (InflammatoryBowelDisease.net Team)

  • author
    3 years ago

    Thank you Dana. I left some stuff out. I also have hypothyroidism and gastroparesis , and am hypoglycemic all derived from my Chrohns. I usually keep everything to myself but lately I feel like I’m going crazy and just need someone to understand.

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