Considering colostomy

I am considering a colostomy due to fecal incontinence due to Parkinson's. When I mentioned it to my husband this morning, I think it gave him the willies. He doesn't even want to talk about it. I don't have a tremor since I have had DBS surgery for tremor in Parkinson's and would be able to deal with replacing the bag. Years ago, I worked in a nursing home and changed hundreds. I am so tired of the 'accidents.' Is there anyone out there that could encourage me/my husband and tell us the surgery would be worth it? It would give me back my dignity and independence, I believe.

This has to be your decision, but... I suffered from chronic constipation and lived on enemas (at least 2 a day) and laxatives every day for over 20 years. I had a ring inserted at the bottom of my colon, due to a prolapse, that almost made it almost impossible for stool to get through. This was 20 plus years ago. I finally gave in to a colostomy only 2 months ago. It has improved my life 100%. I am still learning, but getting better about keeping bags on for 4 days. I am no longer in pain from not going. I don't have to try to go whenever I see a bathroom. I can go on long trips now without worry. My husband is happy for me since he sees how happy I am now. When I clean the bag (which only takes about a minute, if that), the bathroom door is closed so he doesn't see it, but he is fine with it, and I did explain the entire thing to him. I hope you make a decision that will help your quality of life. You only have one life and you should enjoy living it.

Sandywr, Thank you so much for taking the time to comment on my post. It was very encouraging. Take care wishing you the best.

I agree with Sandywr... it has to be your decision... we can only talk about what has happened to us individually... before and after surgery... each one of us is different... you do not mention if it is your doctor who recommended colostomy surgery... It was hard at the beginning for me, but that passes... do research also... as at the beginning no one told me about irrigation... and well, that set me free... I found out about it on this site... as doctors I had were not aware of it... It has been 14 years now... I travel a lot now... in fact, I have just got back from a 2-year trip in my motor home going through the USA... I eat anything I want... I never have to worry about a mishap... as you see, the quality of my life improved by 100% after the surgery... Your husband will come around... as now he is in the dark... about it... get info... speak to an ostomy nurse... and usually, there are groups who meet who have had this type of surgery... they can offer support and information... check out your area for a support group... this will help you and your husband... information is everything to make the right decision... it is only a bag... remember that... if it sets you free to be able to do what you want when you want... then it is a miracle... remember that... all the best to you...

Thank you, WAB - I am so thankful that people are willing to comment. It helps a lot. The 2-year trip in the motor home sounds excellent. Something I've always wanted to do with our 5th wheel. Now I won't have to worry about traveling so much. Take care, and thanks again.

My Ostomy Journey: LeeAnne | Hollister

P.S. WAB I have not mentioned it to my Dr. yet. Am doing a lot of research first. I am sure he will agree with me under the circumstances

Have a look at this link, Jillian... lots of info and stories http://www.colostomyassociation.org.uk/index.php?p=150&pp=3&page=Tidings Magazines

Read as many topics as you can about this. I am not going to put my opinion or experiences - they are not as uplifting. There are upsides and downsides. Make sure you have a good discussion about it with your husband, it matters. My recommendation to anyone: if there is ANY other way to live with or fix your problem do not do this. You are the first person I have heard wanting to have it done without a doctor telling them it's the only solution. It is a very emotional experience in many ways.

Dr doesn't know about it yet, although it's been going on for some time.

Jillian, I fought for over 2 years trying to avoid letting the doctors do a colostomy (for all the wrong reasons!!!). I had radiation damage that left me with a lot of rectal incontinence, and I never knew when it would decide to spew. I had become afraid to leave the house, not knowing 'if' or 'when', and it was not going to get any better. I had no other choice, and there are ups and downs with it. I agree 100% with talking it through with your doctor, checking to see if there may just be another option out there for you. If there is not, it sounds like you are open to the ostomy, which a positive outlook is a jump on the battle. I have a much better lifestyle since my surgery; I go when I want, where I want, eat what I want...and I am even back to taking trips on my motorcycle...YA_HOOTIE!! The quality of my life is good (I am not going to lie, it took some time for me to accept). I am still here; the alternative without was not a good one for me. I wish you well with your choices, and I do understand what you are going through...xoxoxo

Go for it. I had my bag through cancer but still live a good life. It sounds like your husband is being selfish. Improve your life; if he loves you, he will stick by you. x

I lived with a colostomy for seven years and an ileostomy for 15 months. The first couple of months are the most trying because you need to learn how to manage the bag. Once you've got the right appliance and know the technique, well, you can forget about the bag altogether. I am now reversed completely and back to the usual method. Having the bags was easier in some respects than the normal method, believe it or not! Good luck, and don't worry; if the colostomy will make your life easier, don't wait.

Hi Jillian: After having rectovaginal fistulas, repairs, and eventually incontinence, and many years of Crohn's, I too had to have a colostomy and, in my opinion, the quality of life has improved. It is true you must make this decision for yourself and weigh the pros and cons. Although we may not always like what life throws at us, if it helps in some way to make life more comfortable overall, then it is certainly worth it. Wishing you the best in your decision-making and hoping hubby stands by you...no matter what!!!

Thank you for your encouraging posts. My husband is now on board with this. We are both going to the GI Dr. next week.

so happy for you and I hope it all works out for you

Please give your husband a great big hug and kiss for his acceptance and bravery to push on. My husband bailed due to squeamishness (and other factors). Yours sounds like a keeper! :)

One more comment from me... The day when I change my bag, I take a full shower totally naked with no bag. It only happened once, but The Dude decided to get a little active. My husband's response to me was - If you can poop in the shower, then I guess I can pee. He is pretty funny.

The GI doctor did a colonoscopy last week and set me up for an appointment with a surgeon he highly recommended on August 18th, so things are progressing along.

I hope it all goes very well for you and recovery is a breeze. Peace

Thank you!

Jillian, hope all goes well by God's grace. I am thinking about surgery myself; this life is hell! Anything to make life more pleasant must be the way to go. I have been diagnosed with Crohn's.

Chuckduck, God's grace has gotten me this far; I don't know what I'd do without it. Hope it goes well with you.

Thanks, Jill, will be praying for you.