In the initial months after ileostomy surgery, all I craved was normalcy. Life as I knew it had completely disappeared. Gone were the days of getting up and going to the office to work on a variety of enjoyable challenges like writing nature-education curriculum and leading hikes. In my free time, there were no more hiking, snowboarding or running adventures anywhere on the horizon. Instead, life revolved around the wiggly red stoma on my belly. My days played out around endless worries and looked something like this:
7 a.m. How am I going to get my appliance on while my stoma is spewing liquid output everywhere?
9:30 a.m. Okay… got the appliance on. Wait, is that skin showing between my barrier ring and stoma? Geez, maybe I should do it over. My output will certainly eat away my skin if it touches that exposed 1/8 inch. But will it destroy my skin more if I pull the wafer off so soon? I better just do it to be on the safe side.
10:30 a.m. I can’t believe it took me over two hours to get an appliance on and this second one still doesn’t look that great. I need to call Doug and vent about it or I will cry for hours.
10:45 a.m. I need to drink some water. I am already way behind on my liquids today and I haven’t eaten breakfast yet either. I am really not hungry, but Dr. Brown said I need more protein. Is a protein shake and eggs enough?
11:30 a.m. I have only been up for a few hours and I am already tired. Better go take a nap. Am I always going to have to sleep this much?
1:30 p.m. Is that just a regular itch or is it from output touching my skin? Man, this incision hurts. I am not hungry, but I need to eat with my pain pills. I better have some lunch. When are these pain pills going to kick in? Drat, maybe I should have just sucked it up and not taken the pills. What if I become addicted to them?
2 p.m. Why am I watching this stupid TV show? Shouldn’t I be doing something productive? I am just too tired. Dang, I forgot to order those Hollister samples again. I am too tired to do that too. I can’t believe I am about to take another nap. I am supposed to be going for a walk right now, not sleeping.
3:30 p.m. The neighbors must be wondering what happened to me. I am walking so slow and hunched over, but it hurts too much to stand up straight. Is this two-block walk through the park really all I can muster? I can’t believe how much this hurts. This used to be my warm-up walk before I ran five miles, and now I can’t even cover this short distance. And I’m walking as slowly as a turtle.
4 p.m. I miss Doug. I am so lonely stuck here by myself. When is he coming home from work?
5 p.m. Doug is home! Doug is home! Doug is home!
6 p.m. Is this too late to be eating dinner? I am supposed to eat before now, but that isn’t very handy. Is four weeks post-op too soon to eat steamed broccoli if I chew it really, really well? I am so hungry for veggies. What if I get a blockage? Or horrible gas?
7 p.m. Wasn’t that just the 12th time I emptied my pouch for the day? When is this output going to slow down! It is like water. Have I had enough liquids to drink to offset that?
9 p.m. Okay, time to take a shower. Can I get this appliance wet? I better tape plastic wrap all over my belly just to make sure it stays dry and doesn’t peel off.
10 p.m. Time for bed. I should lie on my right side all night just in case I leak. Don’t want to get stool into my open wound.
11 p.m. My back hurts. I sure wish I could lie on my left side but I am too afraid.
12 a.m. Better get up to empty my appliance just in case.
2 a.m. Better get up to empty my appliance just in case.
4 a.m. Better get up to empty my appliance just in case.
7 a.m Thank goodness it is morning but I don’t want to get up. I am going to lie here and cry for a while. Will my life ever be normal again?
And so it went for the initial couple months after surgery. I was overwhelmed and depressed that my entire life now seemed to revolve around my stoma. I tried and tried to picture what things would be like when everything settled down, and I actually learned how to manage my ostomy, but it seemed impossible. I couldn’t see beyond the hard times I was facing in those moments. It was particularly difficult to imagine how I could possibly ever do outdoor sports like snowboarding again.
I wish I would have had a crystal ball back then. Had I, I would have seen that I shouldn’t have worried so much. My ostomy output would settle down as my body adapted. I would figure out my systems and become more efficient with them. My incision would heal. Someday in the not so distant future, my ostomy would feel like a regular part of my life as I returned to work and went on outdoor adventures again. In the crystal ball, I would have seen the point I am at now when everything is so much easier. The normalcy I craved after surgery has been restored to my life.
Last Sunday was a beautiful powder day in the mountains, and Doug and I headed up to go snowboarding. I decided to film the day’s events and create a video showing a typical day on the slopes with my ostomy. I realize everyone’s experiences are going to be a little different regarding their emptying schedule, when they eat, etc. What I hope to show is that once a person adapts to life with an ostomy and gets their own particular systems down, life can feel wonderfully natural again.
11 thoughts on “Craving normalcy (feat. new video)”
Hey, just wanted to say thanks for all your posts. When I was getting down after the initial excitement of not being in near constant discomfort of my UC I started to wonder how I was going to do all the things that I loved to do before my illness took its toll and I found your site. It keeps me inspired.
Just as an aside, I’m sure you’ve figured out how to manage your night time output, but for those who haven’t, I got a supply of “high output” bags. These are about twice to three times the capacity of my normal bag. It has yet to fill in the night, and I’ve had some pretty bad nights. It also allows me to wash my daily bag out and let it dry, which seems to help a bit with the smell. I keep a high output bag for at least a month before getting rid of it.
Hope this helps anyone out there dealing with night time issues.
Anyways, thanks again for your blog.
Thanks for the great suggestion. I have never tried those. I do okay with making it through the night with regular sized pouches except when I am backpacking. For whatever reason this activity changes my output and emptying schedule, and I tend to get a lot more overnight output on these trips. A high-output bag might be just the ticket to avoid having to get up in the middle of the night to leave the tent and dig a hole to empty into.
A lot of what you touch on hits home. I too find myself worrying that what I eat will affect my output and emptying schedule. Why Gluten free food? Do you have a gluten intolerance?
I have a gluten intolerance. I actually found out about it around the same time I was officially diagnosed with UC in 2006. When I was having all the strange GI symptoms, my doctor ordered gluten antibody blood tests (tissue transglutaminase IgG and IgA tests) and they came back positive. She then sent me in for both an endoscopy and a colonoscopy (the endoscope to confirm celiac disease and the colonoscopy because I was having lots of blood in my stools which is not a symptom of celiac disease). The colonoscopy came back showing ulcerative colitis. The endoscopy came back inconclusive for celiac (couldn’t find blunted villi), but since my blood test was positive, my doctor felt I should follow a strict gluten-free diet for the rest of my life anyway. I always hoped being on a gluten-free diet would make the UC go away, but it never did. Still, I stay on the diet strictly, as I know that along with celiac, gluten is possibly linked to a variety of other diseases. Since I know my body produces antibodies to gluten, I don’t want to take any chances by ingesting it.
Also when do you empty your bag? at a 1/3 full, half full, or more?
I usually empty when it is 1/3 full. Sometimes I empty it sooner than that if it is convenient. That was the case in this video after lunch. It wasn’t close to being 1/3 full, but I emptied anyway just so I wouldn’t have to think about it until we were ready to leave the ski area in the late afternoon. Once in a while I have let it get 1/2 full if I was just not in a good place to empty, but knew I would be soon. That situation is rare though– it gets too heavy! Sometimes when my pouch feels full to the touch, it actually only has a little bit of output in it but a lot of gas. I hate filtered pouches because they get clogged in a couple of hours for me. I attach the little Osto EZ Vent ones that you can manually open to release gas. I really like them.
Heidi, Meant to reply to your new post and video last week . . . OK — your timeline on dealing with a new ileostomy describes my past experiences and thoughts exactly. I still have the overwhelming circuitous worries you depict about eating, emptying, exercising, appliance changes, etc. when I’m feeling bad, ineffectual, and depressed. Fortunately, the worries have largely diminished when I’m feeling better, thanks to you openly sharing your story, solutions, and hope. This post is spot on and likely resonated with many others. Well done . . . again.
You mention using EZ Vents . . . have they ever leaked? I’d like to try them.
Now the great part–your video! It’s seamless. Your and Doug’s talent shines through each frame. Really, it’s fantastic and most deserving of your recent award. Makes me so proud of you, the award and video . . . I think I’ll watch it again, having watched it several times already. Danuta loved it as well. Again, Well Done. So looking forward to what you come up with next. If there is anyway I can help get your videos and blog to more people, please let me know, I’ll do it. Ostomates everywhere need this feed . . .
Thanks Cary! Not sure what video is in the works next. Sometimes I fear I may run out of ideas, but then something comes to me:)
As far as the Osto EZ vents, I have been using them for 15 months now through snowboarding, running, climbing, backpacking etc. and have only had one accidentally open once. It happened when I sat down in a chair and my belt got caught under the little flap and popped open the vent. I have a feeling I didn’t have it closed tightly. Anyway, I smelled that it was open before anything came out so no disaster happened. I have never had the vents leak where they were attached to the pouch.
You do have to open the EZ vents cautiously, but they are placed right at the top of the pouch where there is the least chance of output sneaking out. Make sure to sit up when you vent the pouch and clear any output away from the top. I have made the mistake of opening the vent while I was lying down. Big mistake.
If you are using cloth covered opaque pouches, you must trim the cloth away from your pouch in a little circle so you are placing the vent right on the plastic. Then rub the spot with 90% rubbing alcohol on a piece of gauze or tissue until the sheen is gone from the plastic. This will allow the vent to adhere well. I also don’t recommend piercing the plastic behind the vent with a nail or pin… it makes the hole too small and it will clog with output and prevent air from coming out when you open the vent. Instead, get a small pair of scissors and cut a circular opening in the plastic behind the vent so that it is the same size as the vent opening (sorry… a little hard to describe in writing). This will make it less likely to clog. Sometimes it still does… I just roll up a tiny piece of toilet paper and clean it out when this happens.
Hope they work out for you.
Thanks Heidi for this new post. It really described the ‘journey’ well!! I hope you don’t mind that I shared it on my facebook. : )
hang in there! Ro
Thanks! And feel free to share any posts or videos on Facebook.