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.

4 thoughts on “On the other side of the curtain

  1. Laura (aka Stoma-licious)

    Lovely post. All so very true. I certainly couldn’t do it without my loved ones to support and be there for me. They are just as strong if not stronger than the ones living with the disease in many ways. I loved waking up from my afternoon snooze during my hospital stays to see that my mum had snuck in and was knitting or snoozing herself on the chair beside me. I am sure she could attest to those uncomfortable hospital chairs too!!

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  2. Lorraine Austwick

    Hi I have read your post and I can relate to your story I have had crohns disease for 43 years now and I too have been in and out of hospital I was in hospital in the 70’s and I overheard someone in another bed talking to someone she said she was surprised her hub and had stayed with her and that she was laid down all the time feeling ill and no energy and she had said one of her children to school and the younger one would watch her on the settee it was my story all over again . My daughter who was 2 at the time had seen me leave her with someone and go off on the ambulance she stated to say everyone she saw a ambulance it’s for hosser . And now 40 years later on both my daughters are still caring for me on my visits to the hospital.

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  3. Samantha Sawyer

    First thank you for your blog, my husband was diagnosed with acute serve ulcertative colitis in March 2014 and underwent a sub total colectomy after an 11 day hospital stay and having Toxic Megacolon. Our son was 3 months old at the time, and it was truly a scary time for us. Your blog was so helpful for me to be supportive to him, and also to understand more about living with an ostomy, as we had to learn on the fly! I told his surgeon your blog was my new favorite blog:) We will be celebrating 1 year of no surgeries on 9/24/15 as my husband had the reversal surgery and is doing well. Wishing you well on your next adventure, parenthood!

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  4. Jodi Kozar

    Well said! My dad had surgery for colon cancer and is getting chemotherapy now. It is very hard to see him go through this,but he is doing great. I’m always there for him. We found out he is a diabetic due to the chemo drugs,he wants no part in checking his sugar or giving himself his insulin,i feel very proud i can be of help to him. He has always been here for me,now it’s my turn.

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