So I am having a colostomy...

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laurachaps
Apr 09, 2014 8:44 pm

D-Day June 16th! I feel many mixed emotions about having a stoma - my father has had one for 10 years now, although he doesn't cope with it well. My 'outlook' is positive, but I know that can change when I actually have the surgery. I think I am going to be the 'I have a stoma and I am PROUD' person, and I hope this continues when I actually have one. I first got poorly when I was 14; over the years, I have been diagnosed with many things, but they finally have come to a decision that I have solitary rectal ulcer syndrome, which resulted in my colon collapsing! I needed to have ventral mesh rectoplasty surgery last year, but sadly it didn't work!!! I have two beautiful young children, and I hate how they have to see how poorly I am on a daily basis. My son (who is four) knows that mummy has so many problems, and I worry how it will affect him. Sorry if this looks like one block of writing - it won't let me space for some reason! I have named my stoma Elizabeth Anne after two fabulous Tudor queens, and I can't wait to have her!

Redondo
Apr 10, 2014 3:03 am

Hi Laura,
I have had my ostomy for over 40 years, since I was 20. I understand how scared you must be. I know many people who have one, and there isn't anyone that regrets having it because we all feel so much healthier. It saved my life, and I never expected to see 25, let alone 60! Once you get back on your feet again, your children will have a healthy mom to see them through to your grandkids.
Have faith and stay positive. For every negative feeling that you have, try to think of 5 positives that you will gain from the surgery.
You will be proud, and I am proud of having it, too. Your children will also be proud of how brave their mother is to have this surgery that will give them their mother back.
God bless you,
Connie

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Redondo
Apr 10, 2014 3:03 am

Hi Laura,
You might benefit from joining an Ostomy Group in your area. Usually, the hospital can put you in touch with one or you can research online. You might even get to go to one or two group meetings before your surgery. The group would be very helpful to you to get more information. Also, make sure that you get the area for your stoma marked for the best position that your stoma should be. This will be helpful to you for dressing purposes and for your ease and comfort.
Blessings, Connie

funnygurl
Apr 10, 2014 4:50 am
I have a permanent colostomy since 2004. You will handle your ostomy like you handle everything. Take it in stride and get on with your life. I have not found anything I can't do because of it. It is not the big deal I feared. I have a colleague who got the same diagnosis and ostomy 6 months before me and it controls her life and she is a fool. I can tell you are a damn the torpedoes full steam ahead kind of girl. You will be fine! Try different products until you find the combination that works for you. Everyone is different and it will take you a few months to feel confident. After that live your life! There is another on-line group called ostomyland.org that is based in the UK. That is where I started and I learned a great deal. There are also several private facebook groups that I can hook you up with if you contact me.
Bill
Apr 10, 2014 5:16 am
Hello laurachaps. Thanks for your post as it's good to have a reminder every now and then about how we felt before the ostomy. I find that on the few occasions when I get fed up with having one I simply remind myself of what it was like pre- ostomy and then things don't seem anywhere near as bad. It's a very fortunate person who can get through life without something going wrong and to my way of thinking having an ostomy is relatively minor compared with some of the alternatives. Anyway, I wish you well with you upcoming operation and feel sure that you will cope well afterwards. Just make sure you take it easy for the first few months and guard against hernias.By the way I live in Hitchin so we're not far apart. Best wishes Bill
 

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Yancey
Apr 10, 2014 8:56 am

Laura, you will feel so much better and just remember you are a beautiful person and a positive attitude is so important for success. I found that making funny jokes about my little buddy, Fred helps a lot. I have people at work hooting! I know you are scared, but you will be fine, survive, and be a better person for the whole experience!

laurachaps
Apr 10, 2014 1:21 pm

I'm just waiting to see a stoma nurse at the moment... long waiting time, but that's the NHS for you, lol! I think they will tell me where my stoma will be too, which will be interesting. I'm terrified of getting a hernia :/ With two young children, it will be hard to rest all the time! I feel a bit nervous sitting here waiting xxxx

Redondo
Apr 10, 2014 11:40 pm

Hi Laura,
It is very important to make sure that they mark the spot for your stoma. This will really help you with how you wear your clothes and how comfortable you will be. Plus, if it is in the right position, you will have fewer problems with any potential leaks. So, insist upon it for your sake. In 40 years, thank God that I have never experienced a hernia. Just stay positive and you will be okay. Let us know how you make out.
Blessings,
Connie

kbd
Apr 11, 2014 4:55 pm

Laura, you have a great attitude :-) I'm sure you will do well with a stoma. I wish I had not suffered so horribly for so long before having a colostomy. I wish I had gotten mine sooner. It will help you get your life back. Best wishes.

dragon2
Apr 25, 2014 12:05 am

Hi Laura, my son had a colostomy for 6 months and was still constipated. He is 10 years old. He now has an ileostomy, and we have our days of struggles, but your 4-year-old son will see his mum not well or poorly, and do you know what? He will be the most understanding and full of empathy child that you will know. For other children, this is hard to learn but not hard to live with because it's daily. Telling him, "Mummy's a bit sore today," is better than saying, "I'm fine," because they do know! That's the time to look at him with his friends; then you will see the empathy for others straight away. If you want to comment, that would be awesome! Cheers, Julie

Past Member
Apr 25, 2014 6:39 pm

Hi Laura,
Yes, I know how you feel, nervous. I didn't know anything about my operation. I just had stomach pain and woke up 3 days later with an ileostomy. If you want to know more, let me know, and I will tell you.
Hope to hear from you soon.
Regards,
Midgey

dragon2
Apr 26, 2014 2:26 am

Hi, Griffin's mum here, Julie!! All I can say is laugh at the mess that may happen at the start, try to change the bag before eating, and get your kids involved like warming up the bag inside their shirt for you. Then they have some encouraging experiences that can help you instead of seeing some of the pain you may be in, but what you may feel!!! I hope that makes sense. Oh yeah, Griffin wanted me to tell you that the actual stoma has no feeling, only the skin around it. He said eat bland food to start with and be careful of citrus food (pineapple has a lot of acid, more than an orange)!! Hipster track pants will be more comfortable than high ones!!! Oh yeah, just one other piece of advice: check with the doctor how far the stoma is from the tummy button because the further away the better, as we have trouble with his bag coming off in that area!! I hope all this isn't overload for you, but you take what you want out of it!! Cheers, Julie