First trimester of pregnancy with an ostomy

I am a few weeks past the first trimester now, but I wanted to go back to discuss some of what it was like for me those first 12 weeks (or 13 or 14 weeks, depending on who you ask) of pregnancy, some because of the ostomy, some just in general.

What I have experienced so far:

  • I’m sure you all are very aware of my hydration issues and they have only gotten worse since getting pregnant. I have had the hardest time with drinking enough and even when I do, I still feel pretty parched. I know it’s only going to matter more going forward as my skin stretches and I have lots of things my body needs to produce for the little one.
  • Thankfully, I have not had to deal with morning sickness! But I can only imagine that would make the hydration issue even more severe.
  • I have, however, been eating lots (and lots) of food. I’m to the point now where I’m pretty much hungry all of the time… Kind of reminds me of being on prednisone, when the only thing I could think about was food. Because of this, I am also emptying my bag a lot more often than usual.
  • It is difficult to find the right foods to eat. Fruits and veggies, fruits and veggies! That’s all you hear that you need to be eating more of and we all know how difficult that is for ostomates. I was eating a lot of apples for a while, but then I started getting very thick and firm (albeit fairly fragrant smelling) output that I was afraid of causing a bigger blockage.
  • Oh my gosh, I’ve been so tired! For a few weeks there, I could hardly make it through a whole day without needing a nap.  And I took quite a few. (Growing a human is hard work!) Now that I’m into the 2nd trimester I’ve gotten a bit of my energy back, but still not quite 100%.
  • pregnant baby conceive ostomies advice tips tricks stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomyI’ve already had a few people feel the need to touch my belly (thankfully all family, so far) and make comments like, “I think I can see a little something.” Then I have to reply with, “Nope, that’s just my ostomy bag.” (Face in palm.)
  • I’ve noticed in the last few weeks of the first trimester that my ostomy bag had not been sticking as well as it usually does. I don’t think it was from my belly growing, because there hadn’t been much change in that area at that point. And this may be something that is totally unrelated to pregnancy, but I have to wonder if my skin has changed or something like that.
  • joy at getting to see the little peanut and hear his/her heart thumping away!

Things I am nervous about in the future:

  • This is one of those, “only someone with an ostomy” things, but one of my biggest fears is how being pregnant is going to affect my stoma. My surgeon did an amazing job with mine and it’s right in the perfect place and the perfect size and everything, and I am concerned about it never being the same again.
  • I am thankful that all of my doctors have told me that I should not have to worry about any challenges or differences because I have an ostomy, except for the fact that my intestine could get in the way at times, especially during the third trimester. I know this can also lead to blockages as my belly grows, so I’m not sure what to expect in the later months as the baby gets bigger.
  • So far, the only unwelcome belly touching has come from my family, but I know that for someone reason, people just want to touch a pregnant woman’s belly, even one they don’t know. (I’m sorry, but when is it ever OK to touch another person’s stomach without their expressed permission??!) And having an ostomy adds in a whole other level of concern about people touching your belly.
  • This is honestly not a major concern for me, at this point, but in the back of my mind I have thought about how this might affect my Crohn’s disease. I’ll continue praying that it stays as it has been… quiet.

Things I am excited about in the future:

  • One thing I didn’t realize before getting pregnant is how rarely you actually get to see the baby. In the first trimester, I only had one chance to see the little one and he/she was teeny tiny and then we got to hear the heartbeat a few weeks later. So I’m super excited about getting to see the baby again and this time when they actually look more baby-like!
  • I have felt lots of movement in my stomach in the past, but I know feeling a baby moving around in there is going to be completely different! I can’t wait until he/she is big enough to actually feel.
  • I bought maternity pants and it’s like they were made for someone with an ostomy. They’ve got a stretchy belly band at the top, so I’m looking forward to getting to wear them. I may never wear normal pants again after this!

For anyone who has been through pregnancy with an ostomy before, what was your experience like? For those who have not, what are some of your concerns if you decide to do so?

Here’s a little more about my experience getting pregnant with an ostomy.

21 thoughts on “First trimester of pregnancy with an ostomy

  1. Magan

    Welcome to pregnant life! I got a good size hernia from my precious daughter and now I wear and support belt. Very not sexy might I add. So many folks thought they could “see her head” and go to touch me, immediately having an awkward look. Of which I’d confirm when I told them that wasn’t her head but thank you for reminding me I need to empty.

    Reply
    1. Stephanie Hughes Post author

      Hah, yes, I’ve seen that look already 🙂 And thank you for sharing. That’s definitely something I will keep in mind and try to look out for, especially as the little one gets bigger!

      Reply
    1. Stephanie Hughes Post author

      Thank you, thank you! While unfortunately I think hydration is going to be a constant struggle, but now and after baby is here, I’m trying hard to not let it be an issue.

      Reply
  2. Melissa

    Congrats! What maternity pants are you wearing?! I recently found out I’m expecting and we were told 4 years ago that I was infertile -due to Crohn’s and surgical complications during my ostomy surgeries- and I think I’m still in shock! Can’t wait to hear about your journey and hopefully calm my nerves about a growing belly and CD issues 🙂 Thanks for sharing your journey with us all!

    Reply
    1. Stephanie Hughes Post author

      Congratulations to you, Melissa! That is so exciting. I love that you are proving them wrong 🙂 The pants I bought are A Pea in the Pod brand, but I would think that any pants with the full panel would be the same. I haven’t tried any with the partial panel, but they might be just as good, too. I’m looking forward to the rest of this experience, and I’d love to hear about yours, as well, so please continue to reach out and update us!

      Reply
  3. Furrykids Papp

    Congratulations Stephanie, how exciting! I wear maternity jeans and I am not pregnant – they are great support for the ostomy bag and very comfy! Still have a lot of tricks to learn, since I am still a rookie ostomate :)! I will keep you in my prayers that you continue to remain healthy through your pregnancy!

    Dianne

    Reply
    1. Stephanie Hughes Post author

      Love that you wear maternity pants, Dianne! I honestly never thought about it before, even though I have the maternity band by itself that I wear all of the time. Thank you for your prayers.

      Reply
  4. jennj43

    Congratulations!! I so wanted to have another child, but after getting a stoma, I was so scared. Just 2 weeks ago I had a full hysterectomy so now I don’t have to worry about accidentally getting pregnant or keep thinking about it. I wish you well and look forward to many updates!!

    Reply
  5. RainbowCatcher

    You’ll get more energy soon. I was a few weeks into the second trimester before I started feeling more normal. Also, I might be an exception to the rule, but no stranger ever touched my belly, and I got huge (think 9 lb baby born a week late on a 5’3″ frame) so there was plenty of belly to touch. I’m excited for you and this journey you are on–I’ll be praying that your Crohn’s stays quiet!

    Reply
    1. Stephanie Hughes Post author

      Thank you so much! That means a lot. And I sure hope I can follow suit and avoid the unnecessary touching! I hope you and your little one are doing well 🙂

      Reply
  6. Shari

    My daughter is turning 1 in a few weeks and pregnancy with an ostomy, while challenging at times, was not nearly as bad as I thought (in my head). My ostomy nurse was a god send – once my stomach started growing I saw her pretty regularly to change up my ostomy products. I am an avid 2 piece system person, but by the end needed to use a one piece system. Take advantage of those free samples!

    Your right, hydration is key – I’d get sick of water and do infusions to make it interesting and tasty!

    As for strangers touching your belly, my advice, touch theirs back! I was simply amazed by the brazenness of a complete stranger touching my stomach, but then couldn’t stop laughing when she had the gall to be offended when I returned the favor. Best of luck to you!

    Reply
    1. Kim Frazier

      First, congratulations on your pregnancy! I have had Crohn’s for over 17 years and just recently had my surgery so neither of my two pregnancies were with the ostomy. That being said, I feared that my Crohn’s would flare up while I was pregnant and luckily both times I never felt better. I had a vacation from my Crohn’s symptoms and got to enjoy just being pregnant. It was awesome! So it’s definitely possible to have a good pregnancy even with Crohn’s so I’ll pray that all goes well for you!

      P.S. I must be super weird because I loved people touching my belly! lol

      Reply
      1. Stephanie Hughes Post author

        Thank you so much, Kim! We are super excited. It’s so good to hear about your good experience with Crohn’s while you were pregnant. So far, so good for me. No complications or Crohn’s symptoms at all. And I am praying that it’ll stay that way. (And yes, you may be the only person I’ve heard say they loved people touching their belly! 🙂 )

        Reply
  7. Fran

    Congrats! I am 17.5 weeks and I haven’t been able to find any good websites on what to expect, or potential issues.

    Reply
    1. Stephanie Hughes Post author

      That is so exciting, Fran! Congratulations to you, too. It’ll be awesome to have another mama on here to possibly share some of your experiences, as well!

      Reply
  8. amanda

    Ive had 3 pregnancies with crohns disease, 1 of them with an ileostomy. Worse pregnancies ever, made my crohns constantly flare up, with my 2nd pregnancy having an underweight baby. 3rd pregnancy was not as bad but towards the end very painful as i got bigger and my ileostomy prolapsed, didnt go back to normal after i gave birth. Was not allowed a section due to scar tissue from previous operations. Crohns flare up was that bad it set off labour in my 30th week but luckily it was stopped. I would’nt hesitate to do it all again, they are worth it.

    Reply
  9. IamMrsMorrison

    Im now 16 weeks.
    Like yourself I havent had sickness and the tiredness is normal for all ladies I think.
    So far Ive had no change health wise relating to my crohns and just hope things carry on this way!
    Pregnancy wise I had a huge sub chorionic haematoma discovered at 8 weeks but this resolved at 13 weeks and Ive been great since x

    Reply
  10. Taylor Kaszian

    I was born with a tumor on the bottom of my spine causing me to have a neurogenic bladder. I had a vesiscostomy when I was younger and they put the stoma into my belly button, so I do not have a bag. It has been so hard for me to find good research on all of this. Here I am 16 months of trying to conceive. I don’t know if there is scar tissue or something in the way and causing me to not conceive. It is all confusing. My doctors don’t even know if it is a good idea to even get pregnant. They said that if I have a vaginal birth everything will be fine. If I have to have an emergency c-section then my bladder and a few other organs will become damaged. Would love to know more about your pregnancy and everything! I am so tired of going to all of these different doctors and nobody knows what to do with me nor wants to even try.

    Reply

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