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A Love Letter to my Permanent Ileostomy

Dear Ileo,

I’ve wanted to write this for a long time, but I wasn’t sure what I wanted to say…You came into my life when I was struggling so much and not at all sure I was ready for you and little did I even understand at that time, you saved my life in two different ways! For that I am eternally grateful.

Let’s be totally honest…you’ve been challenging and there have been times when I wondered if I could live with you for the rest of my life. But, in the end, I truly knew that I could and that whatever issues we faced could be worked-out with mutual patience and support.

There have been times when I was less than happy with your behavior: you messed up my clothing and challenged me in some of the most interesting public places, but, after the initial stressors, we laughed and laughed at the craziness of it all. For that, I do need to thank you for helping me to identify and remember the important things in life. You showed me what I was able to accomplish, and gave me back my life. There aren’t enough words to say thank you for all of this.

You saved my life. Not only had my Crohn’s damaged my colon and lower small intestine beyond saving, my life was in jeopardy and then they found an aggressive rectal cancer that would have metastasized had it not been removed. You gave me back my life twice and because of you, I was able to continue working, marry my wife, earn my doctorate, and travel. Having you in my life afforded me the opportunity to meet some of the most amazing ostomates, many of whom have now become good friends.

Our relationship has truly helped me realize what is important in life and having you has reminded me that I am not a victim or ‘just a patient’ but an incredibly resilient woman with strong determination and highly developed problem-solving skills.

So, if I don’t tell you on a regular basis, thank you for being such a truly integral and important part of my life. I am forever thankful to have had you enter my life in 1999. Happy 23rd anniversary! Together, I hope that we can help others to learn the importance of having this relationship in their lives, too.

Forever and Always…Jeanne

4 reactions 1 comment

Hi there.... Was curious what to expect after ileostomy reversal surgery. I have heard people need diapers?



I am so sad right now. I just want someone to understand; to hear me. So I’m glad I found this app today. Thank you for giving me a place to get my thoughts out of my head.

It was supposed to be a great, fun-filled day. But my crappy mood caught me off guard and then I put everyone else in a crappy mood. I am so irritable and angry. My husband doesn’t really understand.

I finally went back in for treatment (therapy) about a month and a half ago. I was feeling better but then today everything just seems like it’s caving in on me. I am sad. All I want to do is eat or sleep. I let everyone down. Or at least that’s how it feels. I let myself down. I wanted to do all the things I had planned but I just couldn’t.

I know I should forgive myself, take it easy on myself. But that’s so much easier said than done. Why? Why is it so hard?? Why can’t I just take a short walk? Why can’t I carve a pumpkin? Go to the store? Take my son to the park? Why can’t I just sit with the family and watch tv?

I imagine if anyone on here reads this, you can probably relate. But most others can’t. They just want you to be happy for all the good things in life and be grateful for all God’s blessings. Well, I am thankful for the wonderful things in my life. I am grateful for the blessings I have been given. This illness, though, prevents me from seeing and remembering those things. My depression pulls me down and hides me away and chokes me like a monster at the bottom of a pool holding a chain tied to my leg that it yanks on and down I go. I sputter to the top and see the light only to be pulled back under.

I’ve been tied to this monster for 37 years. There are times in my life when I’ve been in control of the beast. Yet we never part. If it’s not in control, it’s always there just lurking out of site.

I hate it. I hate this illness. I hate my depression. I hate that when I had stage 3 rectal cancer two years ago, I told everyone and that was ok. I hate that I have to be so selective about who I tell about my depression. It’s not fair. It’s not right.

Thank you for letting me get that out of my head. I actually feel a bit better. My tears have stopped. I can breathe again. #Depression