Coping | IBD
YES, you can!
I’ve posted this picture before. It’s a little risque, but I feel the need to show people that there is nothing gross, dirty, or unattractive about someone who has Crohn’s disease or ulcerative colitis. We can even be attractive…or dare I say it, sexy! That large line from my belly button down is my scar from my total colectomy and j-pouch construction surgery. It’s quite long and it isn’t perfect but I don’t think there is anything unattractive about it. The small bullet hole looking scar is where my ileostomy was located, and that semi-colon tattoo is my way of showing my pride and humor during the tough times. Just because at times our disease causes “ugly things” to happen does not mean WE are ugly. I am not ashamed of my body and actually like it more after my surgery scars. Those scars represent a story, the story of a girl who lived years embarrassed about the things that her disease was causing to happen to her body. I made it through all that and I still continue to fight battles with my Crohn’s disease all the time and darn it, I’m proud. I’m one cool chick missing her large intestine!
One of my goals for the work I do in the IBD community is to teach females with Crohn’s disease and ulcerative colitis self-confidence. I don’t like that people outside of the IBD community view Crohn’s disease and ulcerative colitis as an “ugly disease”, but even worse is that some of us who have IBD think of ourselves or our disease as ugly. THIS HAS GOT TO STOP! What about you? Are you sitting there reading this bummed because you think you’re not attractive? Did your inner dialogue start beating you up about how much weight you’ve gained on steroids, hair loss, skin lesions, or any other nasty side-effect we experience? STOP IT. I am told over and over by the people who read my blog that they feel ugly and have been robbed of their self-confidence and self-esteem because of this disease. It makes me sad because I know those feelings well as I have felt them before myself. Our disease isn’t as “pretty” as other diseases because a large part of it affects our digestive tracts. The results being frequent trips to the bathroom, bowel incontinence, and embarrassing tests and procedures that take any dignity you had left. That combined with the side-effects of some of our medications leave it hard to feel confident and attractive. It’s not easy to talk about, we become embarrassed and ashamed, and soon our disease becomes an “ugly disease”.
So why do I care so much? I’ve gone through some real lows during the many years i’ve had this disease. I’ve been down to 82 pounds
and lost all the muscle in my legs so that I couldn’t even walk up the stairs. My hair has fallen out, my body has broken out in acne from steroids, I’ve lost teeth, and have been crippled by arthritis. At one point I spent a couple months wearing adult diapers at night not knowing if I would ever gain control of my bowels again. During those times I didn’t feel attractive at all and I had lost almost all hope at ever having a normal life again. BUT, I overcame it. The nature of our disease is that we will go through highs and lows over and over again. It can be exhausting, but at least I know that when I am experiencing a hurdle that there is a light at the end of the tunnel. In the past I was embarrassed and ashamed, now I am confident and outspoken about my disease because I know I have nothing to be embarrassed about and neither do you!
You have surgery scars? Flaunt them like I am doing in this picture with my fellow fierce fabulous confident friends who also have IBD.
Steroids caused weight gain? This won’t be forever, you can lose it.
You lost a lot of weight? It may come back. If not, pretend you model in Milan! :p
You have an ostomy? Who cares? Look how strong you are!
Acne from the roids? It clears up.
My point is, IBD does not make you ugly. Be proud of who you are inside and out and know that the lowest points of our disease won’t last forever. Sometimes the highest points won’t last forever either, so appreciate them while they are there. We are not ugly, our disease is not ugly, you have nothing to be embarrassed about. So what if you’re sick, if you have scars, if medication affects how you look, etc? There is only one you so be proud of her! Scars, ostomies, frequent trips to the bathroom, pain, and everything else that comes with having Crohn’s disease or ulcerative colitis does not an ugly person make.
-Sara
Sara,You, and all of the girls on this site, are a real encouragement. I’ve had Crohns for 13 years and just had an ostomy put in place last week. It’s been a hard week coming to terms with it, but it’s been reassuring seeing other strong, beautiful women out there living full lives. Thanks for sharing.
Hi Stephanie,Thank you so much for your comment. The adjustment period after ostomy surgery is a journey. Coming to terms with it is a process but you will get there and we will cheer you on the entire way. Just because you have a bag on your tummy does not mean you are unattractive, it takes away nothing from who you are! -Sara
I think we can all relate to being somewhere like this while having this disease, that’s why we are here. IBD definitely takes it’s toll on your self-esteem but it doesn’t mean you have to let it win. Keep fighting girl!
Stephanie, I echo the girls, it is a journey, but it is doable and livable and diva-able! Thank you Sara, Jackie and Charis – love to you all and thank you for your resilience and fabulousness!!
Stephanie, I echo the girls, it is a journey, but it is doable and livable and diva-able! Thank you Sara, Jackie and Charis – love to you all and thank you for your resilience and fabulousness!!
Completely agree with what you’re doing here. But men have the same, if not worse, problems with body image after surgery. You should make one of these sites for guys too.
Mike,I agree that we all go through these things whether we are women or men. I use my blog and facebook page to help both guys and girls. We started this site because the majority of people who come to us are female and they seem to be the ones who are usually talking about this stuff, the guys seem to be more quiet. I’d love to see more guys being open about their feelings and talking too. There are some plans for us to do something specifically for the guys in the future so stay tuned. It wont be a whole website but we have stuff to say to the guys as well. In the meantime feel free to visit all our personal websites and facebook pages, we are here for you too!
I think it’s because men are not generally told to talk about body issues. I also think, regardless of gender, there’s a stigma about talking about an ostomy. It’s “dirty.”
But I don’t really think it’s the dirty part of it that people care about. I think it’s the fact it’s a reminder of illness and that things don’t always go according to plan.
I am really curious what life would be like if I didn’t hide my bag. I spend so much time trying to make sure people (coworkers, friends, etc) can’t notice that I think it could be an eye opening experience to not hide it. I also wonder if not hiding it could help others–I know two people, one with cancer, the other with UC, who refused surgery and died–realize it’s what you make of it.
Also, because I live in SF and because I’ve always wanted to do it, I decided to run in the Bay to Breakers naked, with my bag showing (it is essentially a SF version of mardi gras) this Sunday. It’ll be a new experience that I hope is empowering. I do wonder if anybody will ask about it or be positive or negative. I’ll let you know after it happens.
You bring up very good points. Obviously i’m not a guy, but I do agree that guys are just trained to not talk about it. And yes, a lot of people associate ostomies as “dirty”. Which is all the more reason to show them off and show people that you can still be attractive, young, smart, etc. with an ostomy or with a disease. It’s awesome you are going to do this run. If you don’t mind I would love to hear all about it and talk about the reactions you get.
Sure. I’ll happily post a comment after the race. There’s not much point in trying to raise awareness if you don’t talk about it.
Completely agree with you on the part about others not realizing that people so young can have challenges. I had my surgery at 26 and one of the things that bothered me afterwards was when people said, “but you’re so young.” It was almost like a mini-wake for me. I’m 32 now. Now that I think about it, whether people connect my age and ostomy or not is what I’m most interested in.
Audrey,That is such a compliment! Thank you. The bad days are terrible and sometimes it seems like it will never end but good days will come around again soon. You’re definitely not alone in this that’s for sure. Hang in there lady, you got this!
Hi Sara,
I’ve been on prednisone for about a month, and so far I’ve gained about 8 pounds (2 pounds a week, zomg!), so reading this came at the perfect time for me. Thank you!
You’re most welcome! I know we have a great post coming up soon that is real encouraging for someone who has gained weight on steroids. 🙂
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Had UC since the second week of May 2009, (will never forget that!). Had about 9 months of remission from late 2009 to mid 2010 and gone through pentasa, prednisone (when I first got sick) azathioprine (which helped but didn’t fix it) and now have started methotrexate. I was completely having a meltdown after being put on methotrexate as that seems to be my last chance, short of being on drug trials. But after reading this surgery doesn’t seem so completely life-ending, still scary but there is still hope. I’m going to talk to my doctors about it and still hope the methotrexate or a combination of drugs works but if I have to have surgery someday I just want to thank you for this. All the way from New Zealand, thank you.
well done to you not got crohns but had a stomach ulcer which burst meaning major surgery hence leaving me with a scar from my boobs to my belly button but its part of me now im allive so its all good xx
Love your spirit, Sara, thank you. Would it be possible for you to send me the link to your blog? Thank you very much. Your Y/T vids are inspiring.I’m using my husbands email address for the present. Here it is:
leonardthefast@gmail.com
Thanks again and please keep up your good works and your indomitable spirit.
Nancy
You girls are beautiful xoxo 🙂
you look fine… keloid scars suck and no longer having a normal navel is a tad disconcerting , i have a j pouch .. they had to open me up as well.. it will be about 5 or 6 years before my scars are no longer raised and dark…