I Met My Surgeon Today To Make A Decision On Reversal Surgery… And My Heart Feels Broken

I’m writing this blog post without the intention of posting it. I’m not sure if I’m ready to, but hopefully by the end of this post I’ll feel a little bit better about my situation. I was scared to write today, for the pure fact that I am extremely emotional, and after just a couple of hours sleep last night – very tired.

As most of you will already know, I met with my surgeon today, to discuss reversal surgery. I was extremely nervous and couldn’t fall asleep last night until around 5am, and ended up getting up at 7am to go for my consultation.

I was nervous because I assumed I’d be making my decision today, on whether to go ahead with further surgery or stick with my stoma until I knew exactly what I wanted to do. But it turns out, today was a huge information overload. Information that truly broke my heart.

And as I sit here, trembling, trying to keep the tears back, I feel angry, and lonely, and hurt. I was really hoping for some good news today. All I wanted to hear was that I was healthy. I was pretty sure I was going to go ahead with my reversal, to avoid the “what ifs?” but I’m more scared now than ever before.

I know it may seem like I’m dragging this piece out but I can’t bring myself to actually type out what I was told today. But I’m going to try my best. I’m sorry if it doesn’t all make sense but I’m struggling to get my head around it all. And to those of you reading this, with all due respect, please, PLEASE don’t send me messages telling me your “sisters friend was told this and she is fine” or that “other people have it worse”. Just please. I know that I am not the most unfortunate person in the world, and perhaps somebody you know has been through a similar situation. But this situation is unique from my surgeon to me, and is information for my body only, not a generalisation on what could have been. I appreciate every lovely comment I get, but I’m struggling to get my head around all of this, and really don’t need other thoughts and conclusions running through my mind.

Anyway.

Today, I nervously entered my surgeons office, getting ready to hear about plans for a reversal. Instead, he drew a couple of diagrams and gave me examples of two reversal surgeries. The preferred surgery is where I am just joined up from small bowel to rectum, compared to the more complicated J pouch surgery. He said for my body, this would be safest and easiest.

2

But.

It turns out I may still have active colitis in my rectum, and with this surgery, there is a 70% chance I will flare and become sick again. In which case, they will then have to remove all of my rectum and perform another surgery on me.

And, I mean, I can deal with that. I’m scared, but I can deal. I need to prepare myself to become sick again and expect any occurring risks.

What I couldn’t deal with, and what I wasn’t expecting… is this…

After explaining the complications and the health risks. The surgeon then informed me of something else. And I can’t help but scrunch my face up in anger and devastation as I tell you, that today, as a girl who has only just turned 20, who has undergone emergency surgery for an ileostomy bag after being misdiagnosed for so long, has now been told that most likely, my only chances of getting pregnant will be through IVF.

The adhesion’s in my abdomen will make it too difficult for me to conceive naturally, now.

I understand people have IVF and it is a common procedure. But it was one thing I just wasn’t prepared for. And I don’t know how to deal with this because I never thought I’d have to. It really hurts. It hurts so much to be told that I won’t be able to conceive naturally. I’m sorry if it sounds selfish to anyone, but I can’t get my head around it. I’m literally sobbing, I just feel completely lost. I just wanted some good news. I don’t understand why I can’t just have some good news?

Of course I am grateful that as far as I know I can have children. I don’t want to sound selfish or ungrateful to those that aren’t able to. But for me, this news was hard. I hadn’t gone there with the intentions of this being a part of the conversation. For me, I feel like I haven’t been given the chance. A chance that one day I would’ve liked to have taken, a chance to try for a baby… naturally. I feel like I’ve had a part of my womanhood taken away. Maybe these feelings will change. And once again I really don’t want to cause any offense. But, it just feels like, every silver lining has a consequence. I can be healthy with my ileostomy bag, but I have to deal with leaks, burnt skin, soreness, swelling, and pain caused by clothing I don’t want to throw away. I can have a reversal, but that means a huge chance of ulcerative colitis coming back, of which will result in a more major surgery. And ultimately, this experience will leave me unable conceive without IVF.

I feel scared and I feel like I can’t trust anything anymore. I’m scared I’m never going to get over being ill, or in pain. I worry I’ll never feel “whole” again.

Will somebody please just pray that I will eventually come through this?

Please?

I don’t feel better yet, not from writing this anyway. But at least it’s out in the open now, instead of all bottled up. I’m just hoping time will heal.

My video: What Is Beauty?

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11 thoughts on “I Met My Surgeon Today To Make A Decision On Reversal Surgery… And My Heart Feels Broken

  1. Carlo says:

    “They are pretty sure this will eventually happen.”

    Did they give you a time estimate? 5 years? 25 years? 50 years?

    What is right for you… now?

    Like

  2. ellenwoolley says:

    It’s so hard to read this, I am in pretty much the exact same position as you in terms of options for reversal and I don’t have a clue what to do either. I’ve decided to take 6 months to think things over and hopefully I will have accepted my stoma more by this point.
    The fertility issue to me was devastating but there is more than one way to be a mum.
    Stay strong and brave and NEVER apologise for your feelings!

    Like

  3. mandy says:

    dear hattie, i have just read about your sad news on your reversal, never ever apologise about how u feel, u have gone thru so much and yet u r so young, it really is not fair, please try to stay strong i o easier said than done, i have everything crossed for, and pray that one day very soon u get some good news u so deserve, always in my thoughts sweetheart xxx

    Like

  4. Benedikte Wittenhoff says:

    Oh sweetheart – it isn’t selfish. You’re feeling bad and you should. This IS personal and IS a good reason to be sad. I know things could be brighter or darker, either way it will never be a bad reason to cry. I hope the best of luck to you

    -Rose Marie

    Like

  5. patsygazaleh says:

    I’m praying that you have strength to get past this, learning that when God closes a door, He opens a window. You WILL get better. This will get easier to deal with.
    This diagnosis doesn’t mean you won’t have children, what it means is that you find a way, in only your unique way, to have the life you need. Do not give up.

    Like

  6. Lisa says:

    You have every right to all of your emotions. Prayers for you on all fronts. Never feel bad about how you feel, it’s healthier to feel it and deal with it than to keep it locked inside.

    Like

  7. Jo says:

    I have been my self being told the same news I know how horrible this is I just wanted to send you a hug and say how brave you are for posting this story x

    Like

  8. Zoe Rothwell says:

    Sending big hugs to you sweetie, praying for a positive outcome for you from all of this. You still have a lots of big decisions to make. Take some time to try and process all this information and talk it all through with your loved ones. Keeping you in my thoughts and prayers. Wishing you all the best in whatever you decide. Xx

    Like

  9. Caitlin says:

    I’m so sorry to hear that you have to go through this too… I was told the same thing, but was told by my surgeon that if I stuck with my ileostomy until I want to try for a baby then I would have more of a chance to conceive naturally but it would be preferable to give birth via c-section, so that’s what I’m going to do. Its all of the scar tissue from the reversal surgery that makes it the most difficult, plus the added pressure of your own health and diagnosis. If you need to chat, just holla xo

    Like

  10. Karen says:

    Am praying that all goes well for you. Take time to think and get it all into perspective. Am for you adventures taking place soon your abseiling. You are not alone xx

    Like

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