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Scared

I’ve had UC for approximately 14 years. I’ve tried pretty much all of the meds and have been on Humira for about 6 months. I was in the hospital for 6 days in April and thought everything was now going well. I thought I was in remission. Went for my colonoscopy yesterday and was excited that I would probably hear good news.

My gastroenterologist said that he couldn’t even get started with my colonoscopy because there was a blockage about 30 cm up into my colon that the scope would not go through. I was then sent for a colonography. My gastroenterologist called this morning and said he is referring me to a colorectal surgeon. He said that due to progression on my disease I will probably have to have my entire colon removed.

Waiting for an appointment with my surgeon and my anxiety is through the roof. My husband is upset and worries about me entirely too much. I just need to vent to those who understand. Thanks for listening.

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

  • crystal.harper moderator
    4 weeks ago

    Shari, I’m so sorry for what you’re going through. While I haven’t had surgery myself, I wanted to share some information with you about what to expect before, during, and after surgery. Here is a link to some more info that may be helpful to you: https://inflammatoryboweldisease.net/treatment/surgery-overview/bowel-resection-surgery/

    I also wanted to share a blog post from someone who has gone through it so you know that the emotions you’re facing are completely normal. As Natalie wrote in this article, “short term pain, long term gain.” https://inflammatoryboweldisease.net/living/unknowns-of-surgery/

    I’m wishing you healthy days ahead. Please keep all of us posted on how you’re doing and I’m so glad you found our community to help you get through times like these! We’re here whenever you need us!

  • thedancingcrohnie moderator
    1 month ago

    I am so sorry you are dealing with this, this is certainly not easy and we are here to support you. So many in this community have gone through and are going through exactly what you are experiencing in this moment. You aren’t alone and you have tremendous support here.

    I personally have not had surgery and so wish I could give you some personal advice/share experience. However, you may find this article helpful. I will link it here: https://inflammatoryboweldisease.net/treatment/surgery-overview/

    I hope our advocates who have had surgery will chime in and share their advice. Definitely ask your doctor a million and one questions. Reach out to people on facebook and instagram who have had surgery and get advice.

    Deep breathes. You are going to get through this. I am rooting for you.

    Always dancing,
    Elizabeth (team member)

  • Mike S.
    1 month ago

    Hi ShariS,

    I know how scary this can seem, especially when expecting a different outcome. Surgery may feel daunting but please rest assured that your doctor would not recommend it lightly. They weigh the pro’s and con’s of every decision regarding UC and Crohn’s.

    I recommend openly talking to the doctors about how the situation makes you feel. Ask them about the procedure, like what is involved and why they feel it is necessary.

    Best wishes,
    Mike

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