Saw my doctor yesterday. We decided that my colostomy will remain permanent. Bottom surgery has already broken down, but she said we can wait to do the anus removal surgery until after the holidays. I'm still kinda numb, but there are no more options for fistula-related surgery on my bottom. So, I guess it is what it is. She said I'd have a better quality of life even at 43. I know a lot of people live normal lives with them, but when it's you, it's kinda different. That's why I love all my support groups. Guess I can't be called an asshole because I won't have one, lmao. #BarbieButt. I have to laugh about it, that's just how I deal, either joke or cry and wail about it. It's not gonna change the outcome. Thanks for all of y'all that replied, it's nice to have friends and support groups. I don't have any friends, just me and my 2 furbabies Jax and Jt. They love me unconditionally all the time.
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ShyIntrovert.... I'm really sorry that you couldn't get it reversed. Heck, I think back when I went through the surgery itself. It's not easy in the mind nor the body. I hope in time you will adjust, it actually starts with your acceptance. However, everyone is different, I will keep you in my thoughts. Hold up- don't give up. There is life ahead.
Take care
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Geekyjen,
Thanks for the reply. I will be seeing my doctor on Friday and mention Entyvio. I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared. The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade. Turns out I have been diagnosed with LUPUS. It is attacking my nervous system. I had ulcerative colitis in 1996 and they had to remove my colon. Had a J pouch for 10 years, until it started failing. I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently. I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared. I have had two hospital stays now because of the blisters and the paralyzing incident. I will be dealing with this forever now. I have just been working on acceptance.
I love this website because of wonderful people like you!
Betty
Thank you so much! I've learned that my colostomy is much easier than my ileostomy was. I have, in a way, gotten used to it. I can change it in 5 minutes. I don't have to worry about a sore tushy from my Crohn's disease flares or the worry of soiling myself at night. It's not set in yet, or maybe I've just come to accept it already. Just some negative Nancies, those being my ex-hubby and his mom. They said I'm too young to have it permanently and nobody would ever want to date me because of it. I'm not really interested in dating for intimacy, rather for just the companionship. Thank you for your reply.
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Your ex-hubby and his mom don't know what they're talking about. Don't listen to them! You can date again. There are understanding men out there. You just have to find them. You're young and you have your whole life ahead of you. It can be pretty much normal again. Believe it.
You can have a full life ahead of you and the Barbie Butt is not all that bad! It certainly alleviates a few issues and if you have to have the colostomy, why have the other problems as well if they will continue to be problems. Don't let the Negative Nellies or your ex's opinion matter, it is like you say, when it is you, it is different and they will NEVER know what it is really like to be you! There are a lot of us out there that lead full lives even though I am fairly new to this life, April 2018, I have adjusted. I am married and my husband is very understanding and even though he does not want hands-on with my ostomy care, he is there to take care of me in all other things! He has UC so he understands! Thank God he is the cook in this family! Lol well, if not, I might be skinny! Lol I have had my rectum removed and a permanent colostomy due to a neuroendocrine tumor and am glad to share with you any details you may have questions about.
Puppyluv
My Ostomy Journey: Jearlean | Hollister
Hi Shy,
I had my rectum removed at the same time as my ileostomy surgery (UC). My ex and family tried to make me feel like I was handicapped too. Do not listen to them. I went on to date and remarried. I am divorced now but not due to the ileostomy. There are still good men out there. Please don't settle for less. There are good guys on this site too. Do not isolate yourself. Reach out anytime. We are all in this together.
Rebecca
Thanks hun for the support. I'll be okay, I've been through hell and back but I'm alive!
I'm a shy introvert, too! And I've got a dog—Sassy. I like your attitude. With difficulties such as ours, it's always good to fall into a nice pillow of laughs. Amy
Yup! Gotta laugh or cry and sometimes I do both, but I joke about stuff. It's just the way I cope. I have a Dachshund Jax and a Tabby cat, JT. They keep me going for sure!!
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Hello Shyintrovert. Thanks so much for keeping us informed of your current situation, which I feel sure you are already adjusting to remarkably well. As for the relationship issue; By the fond look in their eyes, Jax and Jt look as if they have plenty of true love to give, so you probably will not need a human to compensate in that way. However, there are still many humans who have not forgotten how to act like animals in their human-human relationships, so don't give up entirely on the species, as one day you may meet someone who can match Jax and Jt for companionship.
Best wishes
Bill,
There will be positive karma from this site. I don't have any wondrous or new words...just a giant mental support hug now that I read your story. The doctor is helpful! In the end, your quality of life will be stable and having read your energy, you are going to thrive! Have a great day and breathe, it's all good!
Pat