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Crohn’s a sucks

I was reading about all these people on facebook that had Crohn’s and their stories, and my heart just breaks. I was diagnosed with UC at the tender age of 25. I was cute and thin and had never been sick a day in my life except for the yearly cold. Needless to say having bloody diarrhea, severe stomach cramps, urgency, hospitalizations, surgery, you name it just ruined my life…at the time… and my marriage…and I was pregnant with my first and only child. I was a mess. I had two 6 week stays NPO at Cedars Sinai (fantastic hospital btw, and the staff. WOW). It was hard. I had two surgeries because my colon was gangrene, then I had an ileostomy and a colostomy bag. A few months later another surgery to put the bag inside. I felt like a human pin cushion, ugly, scarred, in pain, sick and totally ANGRY and sad. My husband at the time pretty much thought I was faking it because in his words…one minute you are fine and the next you are suddenly sick… Yes, I get this sentiment even today at 52 years old, even though the sentiment is delivered nicer. I can understand its hard to grasp. It’s such an elusive disease. But I digress…. I ended u with avascular necrosis in both hips from the prednisone, and a 50 lb weight gain and stretch marks on my hips and butt. That’s because the meds put the weight on me in just one week. NO LIE. I got moon face, the sweats, the mood swings, you name it. So, I ended up at 26 now with a total hip replacement. That’s a whole other post.
I was sick for about 5 years and then miraculously I went into remission for over 20 years. Then…. one day I got a bad “cramp” pain in my side and it was so bad I went to urgent care. They sent me to ER. I ended up in the hospital for 2 1/2 weeks and now am told I have CROHN’s….. HUH?????

So, since 2013 I have been sick pretty much off and on every other day, miss tons and tons of work, get leave without pay all the time since I’ve exhausted my leave and am so angry, depressed and frustrated with this I can’t believe it’s happening again. I have been divorced since I was about 30, gave birth to a perfectly healthy (thank GOD) and amazing son who is now an EMT, studying to be a Paramedic Fireman… He says he got into this profession because of me, and because he wants to help people. He’s a very compassionate person and I am super proud of him. Unlike his loser father who basically said “I don’t want a sick wife”.. what a prize, huh?

But I continue on, even with hospitalizations, every day nauseous, pain all over my body, sores, and pain. I think the worst part is that I am always completely exhausted tired. Anyone with this disease will know what I am talking about. I can’t go anywhere for fear I will have an accident or won’t have a bathroom close by. It makes it hard on family members and friends because I either cancel or just decline an invitation. It’s no way to live and it’s very lonely. when I call in sick, I get. “oh, your stomach again?”.. Yes, my stomach again.. I know my employer wonders why can’t you just get this fixed. I see stuff on TV maybe that would work for you. SIGH…

Sorry this is so dang long and probably depressing. I have left out so many things, but nobody really wants to know or hear every little thing I have had to go through, like changing my iv’s daily because they can’t get a vein. Or because my vein collapses and my arm swells up like a balloon with fluid, to having to put a Hickman catheter in my main artery to get a vein, which ultimately landed me in the ER for a staph infection. Or the times I almost lost my baby because my blood pressure dropped so low, I almost died. I had so many meds, pain meds and so on pumped through me, I thought my son would come out deformed, retarded or with an arm growing out of his neck.. lol.

I went months drinking ONLY Ensure, that was fun. NOT. Even now I have to watch what I eat and it’s taking me years to get the prednisone weight off. Every day is a new beginning and I always have hope but I wish people really knew the real struggle I go through every day. It’s so hard to just put on a happy face and pretend like everything is alright. I have pain and nausea every day, I take lots of meds for other things. High blood pressure, High cholesterol, Diabetes, depression and I even have sleep apnea. I’m a real prize and it’s very lonely not having someone in my life but I have given that up. I’m a mess, who would want me?

I am trying hard to keep hope, happiness and health in my life.. I can only take it one day at a time. I have this fear that this disease and/or all the complications will take my life at an early age but I hope I am wrong. I have a lot to live for still… God bless

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

  • Laurent
    9 months ago

    Everyone should read this, this is exactly how living with crohn is…

    For me in short,
    3jears home now, the boss kicked me out at work when I was sick home at25y old and I needed to move out of my home and search for an other… Every treatment they have, I have had.. Not to mention several operations…

    It just suck but you have to go on, day by day

  • magsmom65 author
    7 months ago

    I just read your reply.. How are you doing these days.. Poor us and our dang struggles with IBD.. Nobody really knows what we go through unless they actually go through it, you know?

  • angeliquecruiz
    1 year ago

    God bless you #Warrior
    I have crohns and it is just miserable.

  • magsmom65 author
    7 months ago

    same to you I hope you are doing well…

  • Brooke Abbott moderator
    1 year ago

    Hi Magsmom65,

    I want to thank you for sharing your story. Please don’t ever feel that you can’t share anything here or that no one will want to read it. We absolutely want you to share your stories with us! That is why we are here!

    I can tell you that you are not alone in having multiple conditions. Most of us with IBD also live with a form of depression and other chronic conditions. And please don’t ever think that you are unlovable or unwanted. EVERYONE, and I mean EVERYONE has something. No one is perfect. And there is someone who will see past all of the physical things that don’t matter…if there isn’t someone already who does see you for who you are. And loves you for who you are.

    Yes, the best thing to do is to take it one day at a time. That’s what I do. I just take it one day at a time. And I try to find the love and light in each day /situation.
    xo
    Brooke
    (inflammatoryboweldisease.net Team Member)

  • magsmom65 author
    7 months ago

    thank you for your kinds words and support. when I was first diagnosed with UC in 1990 there was literally no information about IBD and what little info there was, people were too embarrassed to talk about it.. who wants to discuss their bowel movements, right? I felt so so alone, the only ones that were my support were my parents, thank GOD for them. Going an hour and a half to Cedars Sinai for appts and literally stopping 10 times to go to the bathroom, they never complained or said anything like “not again” like my husband at the time would say. I even had a doctor say it was all in my head and I was doing it for attention. great!! But I digress, CCFA was my only avenue for information for the longest time but it was not interactive or like a support group. I needed this when I was younger.. so I thank God that it’s here now. I don’t feel like a loser, or a freak, or that I am the only one going through this. I really thought that when I went into remission for over 20 years my prayers were answered. unfortunately it came back and seems to be staying and now I have Crohns… ugh..
    In a lot of ways this disease has ruined my life but what can I do..life isn’t fair unfortunately. I just hope they find a cure soon.. It’s a terrible disease to have in so many ways. But, thank you for this forum, it’s a lifesaver. Truly.

  • SusanHU
    1 year ago

    Hi @magsmom65 – thank you for taking the time to share your story! A lot of what you’re sharing sounds very familiar in our community so I hope you find some support and solace here! We’re all behind you and thinking of you on your journey. Please let us know if you have any questions or if we can help in any way!

    Susan (InflammatoryBowelDisease.net Team Member)

  • magsmom65 author
    7 months ago

    Thank you Susan, this forum is wonderful I just wish it was here 25 years ago. I really was so alone in my struggles and lost a marriage over UC, not to mention my colon..but then again it was a lousy colon to begin with.. lol

  • Pam.Kingsland moderator
    7 months ago

    Ugh, I’m so sorry to hear how much you’ve struggled @magsmom65. But, I’m glad you’re here with us now! We’re all here for you. Sending hugs – Pam (team member)

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