5 years: The resentment anniversary?

It has been 5 years since I had my surgery to get an ostomy. It’s funny, I’ve been looking forward to this day because 5 years seems like such a good marker of time. And my ostomy has made such a profound impact on my life, that I felt like it would be a time to celebrate. Five years of not living with active Crohn’s disease; five years of being able to take part in the activities I want to; five years of not living in fear of finding the closest bathroom. But this has ended up being an interesting anniversary for me.

If you look back at my previous anniversary posts (One, Two, Three, Four), they are mostly filled with gratitude and hope. This year, I feel a bit more resentful and not wanting to celebrate my ostomy or what it has given me the past few years. I have not gotten into it yet on my blog, but I will soon tell you the full story of my second pregnancy and the complications that I have been having due to my ostomy. In a nutshell, I just returned home from spending a week in the hospital due to a pretty severe intestinal blockage. It’s actually pretty amazing that I did not end up requiring surgery in order to relieve it. Currently, I have a catheter inserted into my stoma to help ensure it does not collapse or get squashed between my uterus and my abdomen. It’s painful. It’s uncomfortable. I feel exhausted.

And now I am on a nearly entirely liquid diet, which is not only boring, but I’m hungry pretty much all of the time. Plus, I’m worried about getting enough calories during the day, not only to support myself, but to support my baby, too, who is not due for another 11 weeks. Top it off with a 2-year-old who I am home with much of the time and just don’t feel I have the energy to keep up with him, and it’s also difficult to move too much without hurting myself.

Suffice it to say I’ve been feeling pretty sorry for myself recently. I think I’ve been going through a mourning period of having to let go of the plans I had for this pregnancy and the hopes I held onto for a spontaneous birth close to my due date. I had wanted to spend these final weeks relishing the time I have with my son before he’s joined by a sibling and enjoying our life as a family of three. But none of that is going to happen the way that I had planned.

But you know, I’ve also realized that life usually does not go the way you planned. I am not the first woman to deal with complications during pregnancy or concerns about taking care of her other child. I also see how blessed I am that we’ve been able to handle the issue with this catheter, despite how uncomfortable it is. I am blessed to be home with my family, able to move around, and I’m not confined to bed rest at the hospital for weeks, as many women deal with during pregnancy. I am blessed to have amazing family and friends close by who have dropped everything to help us out and make sure that we have everything we need.

So instead of being resentful today, I am trying to focus on the many positives that I have going on in my life: I have a beautiful new baby on the way that I am so excited about and my ostomy played a huge part in me being able to do that, other than dealing with the blockage issues I am healthy, I am not confined to a hospital bed, I have amazing support to help me get through the coming weeks. And I know whenever this baby arrives and in whatever fashion that we will cherish the time we have together. When I think back to when my son was born, and the four weeks I had expected to continue being pregnant, I am thankful for that extra time we had together. And I’m glad to live in an area with some of the best doctors and hospitals who I know will take the best care possible of my little one, no matter what happens.

This anniversary is a little different from the ones previous, but it may end up being one of the most significant ones I experience. Life is not always going to go the way that you want, and it has a way of trashing many of the best laid plans, but that doesn’t mean that all is lost or that we should just give up. My ostomy has given me a great 5 years, and I look forward to what it will allow me to accomplish and experience in the future, despite the discomfort it may be causing me for the time being.

20 thoughts on “5 years: The resentment anniversary?

  1. David Gardiner

    Congratulations ! I too , remember ‘anniversaries’ , & the 10 year anniversary will be in October since I had my ‘ op ‘. I’m basically retired , except for a few small jobs as a self-employed signpainter & I participate in several strenuous sports.
    I also do a few hours volunteering each week at my local Ostomy Association & have made many new friends .

      1. Stephanie Hughes Post author

        Dorothy, try posting on my FB page. There are usually more people who will come across your questions there!

  2. Jaime Cortes

    Hang in there, Stephanie! Women can experience complications during pregnancy without having an ostomy. In 11 weeks, you’ll have another wonderful and healthy child. Your pregnancy would have been much risky and difficult for you and your babies without your ostomy. Once you deliver your baby, it’ll be business as usual with an ostomy.

    We look forward to reading your blog updates in a near future!

  3. Peter Evans

    If you are in Houston I’ll gladly spend a few hours a day with your 2 yr old. They can wear you out when you are healthy. I shall now get involved with local ostomy group to see if I can help. If nothing else, your stories help and motivate us all. Thanks.

  4. Molly

    Stephanie I of course don’t have an ostomy but I had very difficult pregnancy’s. Two of the three were very hard and scary. My love and thoughts to you and you will get through this! You do have the best ever family support systems. Our beautiful babies are so worth it all. 🙂

  5. Donna

    7 years for me this week and I firstly forget. Then I am sure squirt got his revenge as my skin broke down had very loose output but still had to work so went overboard during week trying to thicken it. With no success till yesterday when had a very painful blockage which I had to work through till he point I considered going to hospital. Yep I’m still greatful but also pretty fed up! I won’t forget in future lol

  6. Lori M. Carlson

    I’m so sorry to read of how things are going for you! There will be good years and days ahead of you, I’m sure. You helped me remember that while things are bad right now it’s not forever, and there’s a lot to look forward to. We can still eke out a happily ever after despite it all.

    I was diagnosed with parastomal pyoderma gangrenosum in October, then in February with pre-diabetes. I still don’t know why I’ve lost about 30 pounds in about a year for no reason. One thing for sure, life with an ileostomy is never dull!

  7. Nyree

    Thank you for your posts — hope you have a good post-delivery recovery and a healthy baby. Sometimes I wish I still had my colon and not have to deal with the bag all the time but then I remember how awful it was to live with ulcerative colitis.

  8. Matthew Dobos

    Happy Anniversary Stephanie! https://www.youtube.com/watch?v=DINuAWoxy4Q

    Ostomy Anniversaries I understand, but I can’t relate I had a my “permanent” ostomy at surgery #13 for IBD, and that’s just way too many dates for me to remember! 😉 I’m so glad to read all these posts! Especially the ones regarding your pregnancies because it’s nice to see this disease didn’t keep you from the joys of being a mom. One more victory, among many, but each one counts!

  9. Dorothy Vautour

    SO soory to hear you are having a hard time. wish there was something i could tell you. i had ostomy for two years and my life was a nightmare ever since. it wa given to me for ibs you imangine? well im still the same bloting taking all kinds of meds and my whole life resoles around it . if i ahve a good day and manage to empty my bowel then im happy but not for long, so this is on going i dont know the end just that they are runnig out of laxative to give me,im going to try acupunthure you never know eh ?

    1. Stephanie Hughes Post author

      Hey Richard, I am doing alright. Still have a lot of concerns for this pregnancy but overall things are good. Thanks for checking in!

  10. Rachel

    Stephanie, I commented on your last post and thought I’d update you. I could’ve been writing your most recent post myself. I too spent a lot of time in hospital and with a catheter around the beginning only my third trimester, and I spent the final 9 weeks of my pregnancy on a liquid diet (very happy to make suggestions if you’d like them, email me!). I’ve had my ostomy for 13 years and never once resented it until being pregnant.

    My daughter was born exactly one week ago and, despite concerns of growth restriction, was in the 33rd percentile for birth weight in the end. Today has been a hard day as a first time mum, but she is still perfect.

  11. Whitney

    Hi Stephanie,
    I’m 29 weeks and a few days and was discharged from the hospital a few hours ago after my first blockage. Can you share any smoothie / liquid recipes you’ve been relying on? I’m trying to figure out how to get the calories and nutrition baby needs with a mainly liquid diet.
    Thanks in advance and congrats on your second little one!

    1. Stephanie Hughes Post author

      Whitney, Congratulations on the pregnancy! But I’m so sorry you’ve dealt with blockage issues, too. So what I’ve been doing is juicing to consume some veggies without the fiber. Carrots, celery and apple is the easiest and tastes pretty good if you’re not used to juicing. I also keep a lot of Boost on hand to fill the protein gap and using whey powder and spinach in smoothies. I’ve also been trying shakeology recently to get some good nutrients without all of the filler stuff that the other drinks have in them. As far as solids, I’ve been sticking to very low fiber. My rule of thumb is if it’ll dissolve in water, then I’m ok with eating it. Unfortunately, this mostly applies to junk food, but I have had no further issues since my hospitalization. I hope that’s helpful. Feel free to email me if you want to chat more! And good luck with the rest of your pregnancy!


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