When your body fails you

I wanted to share something I wrote just 3 days before my son was born. This was after 3 hospitalizations for an intestinal blockage (which you can read more about here) and just 1 day before I admitted myself to the hospital for a fourth time and eventually would have labor induced. It was definitely not what I had planned and it took some time for me to come to terms with the idea of letting go of the labor and birth I had desired.

There comes a point with this disease that you start to feel like your body has failed you. For me, that point was a long time ago. Longer than I can remember. And I am very thankful that I haven’t felt that way in a long time now. But by the time I admitted myself to the hospital for the third time in as many weeks, all of those feelings started flooding over me again. And this time they were even worse because I didn’t feel like I was just failing myself, but failing my child, as well. My child hadn’t even been born yet and already I couldn’t take care of him. I couldn’t get him everything he needed.

And when the doctors started talking about having to take him early, because my body wasn’t doing what it was supposed to do, it scared me. I had promised myself from the beginning of this pregnancy that I would not be one of those people wishing the baby out earlier than he was ready. Because I know that they stay in there for a reason and that when he was ready, he’d come. I didn’t want to wish any negative side effects on him simply because I was uncomfortable.

FullSizeRender-4But I was also dealing with the fact that keeping him in could be just as dangerous. I had to stay healthy in order to keep him healthy. When things started going downhill for me, I had to take medications, stay away from some of the healthy, but hard-to-digest food I was eating, and spend long hours in the hospital, all of which could cause him harm. Still, the last thing I wanted was for him to enter the world surrounded by cold machines and being hooked up to tubes and wires. I have spent enough of my life there that I hope he never has to know that. I wanted the first things he knew to be me and his dad and how much we love him. I wanted it to be warmth and excitement, not being whisked away to a NICU.

These are feelings I don’t know how to move past. It’s a hard place to be when you feel like you can’t trust your own body. All I can do is pray and trust that God will see me through and will take care of my little one, whenever and however he arrives.

I cried the entire time I wrote these words, feeling so uncertain and scared. I am so thankful that God did see me through and He did take care of my little one who was born at a healthy weight, did not have to be hooked up to any tubes or wires and spent no time in the NICU. He came out to that warmth and excitement I had hoped for him. I’ll share the whole story with you soon.

So while things did not go exactly as I had planned, in the end we had a healthy little boy. And during the induction, my body stepped up and allowed for a smooth delivery. It’s like it knew it was time for him to be born. I guess it wasn’t as much of a failure as I had thought. 

On the other side of the curtain

I spent some time earlier this year on the other side of the hospital curtain. My best friend went in for emergency surgery. I was thankful that it was a day I was already planning on working from home, so I was able to drop everything to go see her when she woke up in recovery. It brought up a flood of emotions seeing her in that hospital wing, a little loopy from the anesthesia, but still looking beautiful.

hospital surgery recovery ostomies advocacy stephanie hughes bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomyThankfully, it was a successful surgery and she is doing great and was even able to leave the hospital just a few hours after the surgery. I spent those few hours there with her and her husband and the nurse who was monitoring everything.

This was one of the few times in my life that I was sitting in a waiting room, unsure of what was happening or going on with someone I really care about. When I went home later, I just crashed. I felt like I had been hit by a bus and there was nothing left. I tried to do some work the best I could, but mostly just curled up under a blanket on my couch and watched Gilmore Girls and eventually fell asleep.

It made me realize how much it takes out of you being the support for someone who is going through this sort of thing. I got a glimpse of what it must have been like for my husband and parents and sisters and friends every time I was admitted to the hospital and after each of my surgeries. It hurts me to think about all of those nights my husband stayed with me at the hospital, or when he had to return home while I was still there. I think about those 25 days I spent in the children’s hospital when I was 13 and can’t even imagine what that must’ve been like for my parents. And while It makes me sad to think of all they went through, it also makes me so thankful. I am thankful that I have such wonderful, loving people in my life that are willing to endure that and to be there for me, no matter how hard it is and no matter how much it takes out of them.

I realized at the beginning of the year that 2014 was the first year I hadn’t had surgery in three years and the first year I had not been admitted to the hospital in over five years. I had a period there where about every other month I was spending at least a night in the hospital, if not more. At that time, I don’t know that I could’ve imagined a period in life where I wouldn’t have to worry about when the next hospitalization might come.

Of course just a couple of months ago I had to deal with that again as I checked myself into the hospital 4 times in 4 weeks due to an intestinal blockage that was complicated by my pregnancy. By the third time I told my husband that I needed to go back to the hospital I could see how difficult it was for him. At times, I think it was harder on him than it was on me.

But during those times, both recently and in years past, through overnight stays and surgeries, I always had an army around me, helping to hold me up and get me through it. And now, I do know that I will never take for granted those people who have put their lives on hold and spent long hours waiting for news from the doctor on behalf of me or sleeping in the most uncomfortable chairs known to man.

Caring for someone with a chronic illness is not an easy thing. Those people have been through a lot. They live in a land of unknowns. For those of us who are dealing with an illness, we at least have a better understanding of what’s going on and we know our bodies well. But for those on the other side of the curtain, there’s little comfort they can find as they wish there was something more they could do, something to make the other person feel better. But they can simply sit and wait. Those of us with a diagnosis are not the only ones living with that disease. Our loved ones are impacted just as much sometimes, just differently. And these people are stronger than we sometimes give them credit for. I, for one, do not know where I would be without them. They give me strength to keep fighting and something worth fighting for.

Third trimester of pregnancy with an ostomy

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 urostomy third trimesterFor anyone who followed along with my pregnancy, you’ll know that the third trimester was not particularly kind to me. I had 4 separate hospital stays during weeks 32-35 for bowel obstructions (which you can read more about here and here), the last of which resulted in an induction and the birth of my son at just shy of 36 weeks.

Thankfully we were mostly done with all of the things that needed to be taken care of before baby’s arrival, but when the doctors first started discussing me delivering early, we jumped into high gear on wrapping up everything that was left to do. Here’s a little of what the final 3 months of my pregnancy were like.

  • I am happy to report that I did not have any major issues with my ostomy bags. They stayed put for about the same amount of time that they did previously without me really changing much in my routine. However, I’m sure this might be very different for other women, depending on how their stomach grows.
  • My stoma got huge! Seriously, it was kind of crazy how big it was. It was at least 20 mm bigger than it was prior to my pregnancy, so this is what changed most in my ostomy routine. I had to order larger size bags, because the wafers I normally use were not big enough. Cut-to-fit has definitely been the way to go, since I never knew quite how big it was going to be, and I just measured it every time before cutting.
  • Even though the stoma was a lot bigger, it was less prolapsed than it had previously been. During the 2nd trimester, I felt that my stoma was hanging out a little far. During the 3rd trimester is was still out far, but more rounded and looked basically like my stoma did previously, just twice the size.
  • Bowel obstructions are no joke. I definitely know now to pay more attention to what I eat during those final weeks, when baby and your intestines are running out of room. In any future pregnancies, I will probably restrict myself to a liquid diet starting much earlier.
  • Eating becomes a lot more complicated when you’re pregnant, because you have to consider not just what you’re eating, but what you’re feeding your child. This becomes even trickier when moving to a liquid diet. It’s difficult to get enough calories, while making sure you are consuming healthy calories, protein, calcium and all of the vitamins that you need. I had to start getting creative with the foods that I ate.
  • Hydration is so important!! I can’t stress this enough. I know I’ve had hydration issues for a long time, which were then compounded by getting an ostomy and have increased further since getting pregnant. It is so hard to stay fully hydrated, and I’m sure dehydration played a role in my bowel obstructions.
  • nst baby ostomyI started getting a bunch more tests done once I started getting bowel obstructions. I had a number of what’s called a non-stress test, which monitors the baby for an extended period of time, making sure the heart rate stays where it should. They have to wrap these straps around you, and almost all of the nurses were concerned about bothering my bag, but it really didn’t cause any issue for me at all.
  • The bag remained easy to empty. I was worried about the logistics of trying to empty it into the toilet, but found that it was really not any different from before. I just had to sit a little farther back on the toilet seat.
  • I mentioned previously that my ostomy became more visible through my clothes, and that definitely remained the case. Thankfully, there are lots of options to help keep it less visible, such as wearing flowier tops or wearing a maternity band.
  • Sleeping was not easy, no matter what you do. Pillows help, but my bag did get in the way sometimes, especially since you’re supposed to lay on your side and it can get squished. However, I did not have any actual incidents with it leaking because I was laying on it or anything like that.
  • I did NOT have a ton of people touch my belly. (Hallelujah!) And no strangers felt the need to do so. Not really a big fan of people touching my stomach at any time, pregnant or not.
  • Thankfully, my pregnancy did not really bother my stoma site. On occasion I got a kick over in that direction, but nothing too bad. Again, I assume this could be very different based on the baby’s position, but I’m glad to not have had to deal with it during this pregnancy.
  • Of course I did end up giving birth 4 weeks early, but thankfully the delivery went smoothly and my son was born perfectly healthy. I’ll share more on his birth in the future.

For any other mommas out there who have been through/are going through pregnancy with an ostomy, 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 and my first trimester and second trimester with an ostomy. 

Introducing Waylon

Waylon Alan Hughes was born on Friday, June 12, 2015, at 9:13 p.m. He weighed 5 lbs. 11 oz. and was 19 in. long. His gestational age was 35 weeks and 6 days. He was born as the result of induction after four hospitalizations in four weeks due to a bowel obstruction.

Hughes Family

He and I were able to come home after a three-day hospital stay and thankfully he did not have to spend any time in the NICU. He is perfectly healthy and was already back to his birth weight after just four days.

Other than the initial complication of the bowel obstruction, the labor and birth process went smoothly. I began immediately feeling better after the birth and my ostomy seems to be good as new!

For now, I’m just spending my time obsessing over this little one.

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