What’s “normal” 4 years after an ostomy?

ostomy selfie stephanie hughes stolen colon crohn's disease inflammatory bowel diseaseHow can 4 years seem so short and so long at the same time? It seems like just yesterday I was scared and feeling horribly sick preparing for this surgery, but at the same time, I almost can’t remember what it was like beforehand. It’s been 4 years… 1461days, to be exact, that I have been living with my ileostomy.

The good news is, throughout that entire time, I have never regretted my decision. Yes, I have had times that I resented having to make the decision in the first place, or wished none of this had ever happened to me, but that’s not anything I can change. Based on where my life has brought me and the decisions I was faced with, I am so glad I made the choice that I did.

Living with an ostomy is a funny thing. Like anything else, after time you get used to it and you stop thinking about it all of the time. It’s like my phoenix tattoo I have on my forearm. phoenix tatI see this tattoo every single day. It is always right in front of me. Yet, there are many times that it will suddenly catch my attention and I will realize that I haven’t noticed it in a while. It has simply become part of the scenery of my life.

I feel the same way about my ostomy. Obviously, I have to deal with it every day, multiple times a day. It’s impossible for me to go a day without me thinking about it at all, yet I still find at times that I have “forgotten” about it for a little while. Or at least I haven’t paid any more attention to it beyond the usual daily maintenance. It, too, has slipped into the background.

Obviously it’s not like this every day. I still have times where it very loudly announces its presence in the form of a leak, or itchy skin, or a literal loud noise. But after 4 years, it’s so ingrained into me as part of my normal routine that it often takes something like that to make me pay a little extra attention.

And that is what my normal has become. I truly don’t remember what “normal” is—at least normal for the majority of the population. I don’t remember the last time I had a normal poop and I definitely will never have one again. And it’s thoughts like this that still freak me out a little bit. Never. It’s such a big word. It’s so… final.

Despite how much of a blessing my ostomy has been and how much it has changed my life for the better, I still struggle with the nevers and forevers. I wonder if I will ever get used to them. I don’t honestly know. Ask me in another 4 or 40 years and maybe I can tell you then, or perhaps I’ll still be wondering.

This is a major reason I try to simply take it a day at a time. When I think about my future, I don’t think about my ostomy. I’m not sure if it’s a good or a bad thing. I think it’s good because I’ve never wanted it to consume my life to the point that it’s all I think about and it’s a constant, painful reminder of how my normal compares to other people’s interpretation of normal. The fact that I don’t automatically think about it when I picture the future makes me feel I am holding to that. But I also realize that when I do consciously think about having an ostomy for the rest of my life, it still hits me kind of hard. It’s almost like there’s still this small part of me hoping that one day I would no longer have it. (Trust me, though, there’s nothing left in there. It’s not going anywhere!)

Even so… while it may be difficult imagining the rest of life with an ostomy bag, I will always be thankful for it and how much it has changed my life. The past 4 years have absolutely been some of the best of my life and I am so thankful that my ostomy has allowed me to live it much more fully than I had been previously. So I guess here’s to the next 4 or 40 or 400 years with an ostomy!

9 thoughts on “What’s “normal” 4 years after an ostomy?

  1. lciesinski

    I have had my ostomy for about 2 years now and I am aware that if I didn’t have it my quality of life would me very bad right now. I had pelvic mesh surgery about 6 years ago and the mesh had eroded into my lower colon and caused a blockage. It took me 2 years to find a doctor that actually found the problem and told me what I needed to do to fix the problem. I cried for days before making the decision and I will say it was one of my better decisions. After my surgery I lost about 45 pounds but since then I have gained about 50 pounds. I have tried eating properly but then I have issues with my stomach and ostomy. I have also tried to exercise but have found that when I do the normal exercises that my ostomy gets in the way when trying to do some of the floor exercises. I then get frustrated and stop doing them all together.

    I really do not have a support group because my family really does not want to discuss these issues with me so I find myself getting frustrated, angry, and depressed about the situation. I used to be a very strong person before the problems with the mesh and now the ostomy. I find that I have been letting the difficulties stop me from being the person I used to be. I am so overweight and out of shape that I don’t know if I can ever get back to my smaller, stronger self.

    If you have any advice or words of wisdom that you can give me I would really appreciate them very much.

    Lou Ann

    Reply
    1. Jayne Homsher

      Stop worrying and love life. Remember there are so many people that are sick. YOU ARE A SURVIVOR. Think about what you can do to help others and in turn this will help you!

      Reply
  2. Jayne Homsher

    I will have my latest stoma for 1 yr on May 26th this year. I consider myself to be a survivor of Ulcerative Colitis. I coded blue after my first ileostomy surgery after being stricken 3 days after my June 2014 surgery. Spent long time in coma in ICU then moved to nursing home rehab facility to get medical care and to learn how to walk and talk. Unfortunately that stoma died and.I got a ruptured abdominal walk from bad care abuse from the wound care nurse. Ended back in ER at the hospital and taken immediately to surgery. New stoma and repair to me did nit work. So third try for a working stoma occurred last Memorial Day week. I am hanging in there which is what we all to do. I now have diversion colitis diagnosis so I need to have my rectal stump.of 2 inches removed when I am well enough. I am a survivor and all of you too are survivors. Life is.a blessing for us fighters.

    Reply
  3. Anne

    4 Years ago I had a slight stomach ache (over and over again) ended up on Feb 29 2012 with a colostomy(A little over 1 month in hospital) 6 months later went back for the reconnection on Aug 29 2012 on 9/11/2012 that reconnection failed and back to the hospital to keep me alive came home later in the month with an ileostomy and the Dr. said it was probably for life. I adjusted to the colonoscopy because it had an end date. In the four years that I have had the ileostomy I never got accustomed to it or the idea of it. On April 6 2016 I had my ileostomy successfully reversed, no more bags…..that lasted until the 20th of April when I went back to the hospital after a whopping 2 days home and developed a fistula and it was back on NPO, TPN and I just once again came home. I hope this is the end of my colon story…..who knows.

    Reply
  4. lciesinski

    Great post and I really enjoy reading all of your posts! You are always so positive and it really helps me in many ways. How do you hide your Ostomy bag when you go out in public or do you hide it? I have bought some long shirts and pouch covers but a lot of times the bottom of pouch cover shows. I get funny looks from people when that happens but I don’t know what else to do. Most times I stay home because of it.

    Reply
  5. Rachael

    I have been FIGHTING for 17 years to do everything in my power to stop from having to have an Ostomy. I was 14 when I was diagnosed with a condition that would end with my developing colon cancer. 100% of people with my disease develop colon cancer. Still at this time I was young and very vein and the thought of having a bag was too much. So instead I was aggressive with having colonoscopies every 3 months to have all my polyps removed before they can turn cancerous and I develop colon cancer. So to make a long story a little less long. I waited and they made enough advances that I was able to have my entire large intestine removed and it wouldn’t require a an Ostomy so I jumped at the chance. Everything went pretty well and I was happy. Fast forward 2 years and my husband and I got pregnant and during the beginning of my pregnancy something was bothering my but I couldn’t put my finger on it. I also was suffering from morning sickness that was worse then I had imagined. I didn’t have any morning sickness with my first pregnancy. So I chalked it up to morning sickness UNTIL at 14 weeks I started having shooting pain in my stomach and rushed to the hospital. The first 2 times I went I was told everything I was fine then after several weeks of returning to the hospital they finally found that I had a full blown bowel obstruction. I had to be put on T.P.N. and pain medication to give my son the opportunity to grow enough that I could deliver a HEALTHY baby then I could focus on myself but not until I knew he was safe.

    I was hospitalized for three months had a lot of complications and even ended up in the I.C.U. with sepsis and we faced the fact that my son and I both might not make it. Luckily God is amazing and we made it to 34 weeks pregnant they knew his lungs were developed after doing an amnio so they decided he was healthy enough to deliver. So they could finally after 3 months operate on my intestine. It ended up being much worse then they had originally thought and 8 hours after I went into the O.R. I came back out super sick and in shock. My body had a pretty violent reaction knowing he is going to be doing something dangerous I am going to trust you but if you don’t I will kick your butt. The surgery went successful and I have been happy and healthy since that point. Until a few days ago. I am now back in the hospital with another partial obstruction but this time they have to operate because the scar tissue is so bad that they tried to do everything else to clear up my obstruction because the last thing I need is more surgery. More surgery = more scar tissue = me getting sicker and sicker. I am going to be having surgery sometime this week and it’s a real possibility that there won’t be enough small intestine left to reconnect my intestine. I may wake up from this surgery with a Ostomy bag attached to me. The very thing I have fought against for 17 years is now the thing I am explaining to the rest of my family isn’t that big of deal at all. Even though at 14 they were all able to convince me it’s not all about the quantity of your life but the QUALITY that truly matters. No one wants to live a life that has no quality. So my family felt they were doing what was best when I was 14 and I agreed with them. Thats what made it so hard for me to say I am going to accept this bag, I am not resisting because now it’s no longer about me. If I get cancer because I decided to take chances then the only people I hurt the most are my children. I would substitute the QUALITY of my life if it means I get to enjoy my life with my children. I want to not only watch them grow up but help them to grow up and become happy, successful, well adjusted Adults (Eventually, but they are going at a record pace and need to SLOW down) their happiness is paramount and if I have to live a life with less quality because I have to have a bag I will.

    The thing that I am most surprised by is the more I looked into it the more I read, and watched and learned. I realized that majority of people with a bag do not feel bad for themselves, they aren’t angry about it. In fact many are finally happy and I can’t tell you how many times have read that people wish they had done it sooner. I am in quite shock I really thought this was something that had a stigma attached and I couldn’t have been more wrong. It seems that more people then I could ever imagine live their life with Ostomy bags and they don’t feel like their quality of life is any worse then mine. Just DIFFERENT. Instead of me spending hours and hours in pain from eating I hope this will stop all of that, I hope that I will be able to like eating again. I hope that I can learn how to eat as properly and healthy as possible because these habits have to start with me in order for my children to learn that you have to take care of your body and a big part of that is diet. We don’t diet in my house because of weight or because of anything other then the fact that we know what we put into our bodies is what we are going to get out of our bodes. Now i will admit since I was diagnosed with Addison’s disease in September I hardly EVER ate at home or even ate at all. I avoided it until my blood pressure dropped and my blood sugar dropped and before I knew it was I was blacked out. We never found out what happened and what caused that scary ordeal but it was then I realized I wanted to improve the quality life we live for our children. So sometime this week I will wake up from surgery with a pretty big chance I will wake up with the thing I have been fighting for 17 years possibly on my stomach. It’s a hard pill to swallow but I am happy and I am super excited and I just am so happy. I can’t believe it I am so excited. I want to move in and get the house ready and of course get a nursery to come over and do it before I return home from the hospital so I can come home to a clean house that won’t make me want to clean before I will be able to relax. So I guess the reason I am sharing my story is that I am hoping that I can help at least one person in moving forward with the company we should always know. I am hoping that you were able to successfully read my story because I know I am on a lot of medications.

    I however have come to terms with Ostomys I no longer see them as the enemy in which would steal the quality of my life from me. When now I am hoping that it will take away the pain I have everyone I right. Maybe you have what I have. So far if you do it’s not bad enough they would do anything about it but we still need to get it done so we can at least see. Maybe if I continue to work with the school they will figure out exactly what learning disabilities my son has. We requested the school assistance with our son and his first year of school when I signed up and he didn’t even begin seeing someone until the end of the 3rd semester with only 1 semester left my son made so much progress that they went from holding up back to repeat to actually The most improved student in the class. I am so shocked and so happy and feel so very blessed. Now I see God working every where I go. I am hearing the works of God all around me when I hear laughter and love being shared. I have surgery coming up and I don’t know whats going to happen but I do know that finding your blog and watching youtube videos I have so many woman to thank because of them I am able to find the strength to do this and I feel this is one of the most informed decisions I have ever made about a music video or anything in general really. I have always had freedom with my songwriting which is fantastic but this caused something else inside me. This lit me up inside and the only thing I want to do is find a way to help others through something like this. Now like I said we want you to stay so we can see you resting and looking at your nails while barely listening to whats going on around you. We need to get our focus back. Stop looking out our phones or laptops, stop worrying about what needs to get done and just spend some time with your son or daughter and make sure you stop everything for a couple hours EVERY day to spend quality time with our children. This will not only strengthen you bond but it will provide that our children will be able to survive off the land like we have been doing it, but we have. So I am not really sure of my plan but I know it doesn’t involve taking risks like I used too. It’s about making sure I live life to the fullest with out risking it because I have way too much I want to live for.

    Last thing I want to say is I fell off the path of God and I know that the only way for me to get through these times is by putting my faith within the Lord and beginning for his forgiveness or resent. He simply “is.” but they my friends is for another day, another time, and let this be your sign that it’s time to change our unhealthy lifestyle.

    Thank you for this blog and all you are doing to help spread awareness.

    Reply
  6. Lynne

    Oh wow what can I say

    First I guess a little about me, I’ve been part of the crohns now for more than 25 years, I’ve had ups and downs, but about 16 years ago I started my surgery journey, after having some strictures removed things went a bit pair shaped and I ended up with my first ostomy, Colin, the colostomy, next 2 years later, we decided (me, my surgeon, and my IBD specialist), it was time to give my small amount of colon a bit of a rest so only about a year of my first ileostmy, Ivor, then I was reconnected, which was great at the time, because I was young and didn’t want to be different, and wasn’t handling things too well.
    10 years or really good health followed no flares, no hospital, just a pretty normal life!
    Then I hit the wall at the grand age do 47 I had what I call my midlife crisis, and decided I was 21 again and I could smoke and drink with the ‘young ones’ from work, I was having a blast, and I still see it like that, it was a fun time, but there was a recurring cramping pain happening, didn’t bother me much so just kept on going!
    So the last probably two years have made up for it and it’s been hell, in and out of the big house (hospital) too many time to recall, including a few with severe dehydration, luckily I don’t remember much about these, as I totally lost the plot, steroid phycosis, I’m really glad I don’t remember that one much, but went really nutty! Weight lose at the being of September I was 74k by the end I was 53k I was given this that and the other to try and managed to keep okish u til January of this year, I was the in the big house, for nine weeks whilst I was being fed by a tube for about a month before my surgery to build my body up ready, then the surgery was going to interesting as I’d been warned that I would most likely come out with an ileostmy but also a feeding tube as my bowel was such a mess.
    I had a wonderful surgeon who spent six hours undoing all the knots in my bowel, and I’ve been very lucky and still have a 120cm of bowel left, and a new friend Sidney(my Stoma)

    I have put all my weight back on, I take to many pills to slow everything down, and of course vitamin tablets and infusions for inflix, and iron and anything else I need!
    So now I don’t smoke or drink, my addiction is chocolate cake, and I’ve just taken up running or what I like to call being dragged around the wood by my collie x puppy!
    I laugh again, I happy, I go to work(a little less than before), I see friends, I still find it a bit difficult to be in places were there are lots of people, but I’m doing ok!
    Sidney has good days and bad but I’ve realised, that’s life!
    Crohns to me is like an old friend, that I see now and then, Sidney I see as a new friend and i openly talk about him, even if he can be a pain in the ass ha ha!

    I’ve written my story, because I do enjoy very much reading other people’s and how they cope because it gives me hope, understanding and leaves me feeling thankful!

    Thanks for reading, and I really do love this blog
    Xx

    Reply

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