Considering a Colostomy: Seeking Advice and Experiences

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Csladybug
Nov 24, 2018 4:04 am

Hi everyone.

I must say I'm grateful for this forum and I feel like I've found myself in uncharted territory, and the idea that there's someone else who may have advice is comforting.

I'm 24 years old and have cerebral palsy. I have trouble walking and have weak muscles. I use a wheelchair to get around but am mobile and enjoy a normal life. For as long as I can remember, I have had urinary and fecal incontinence due to CP. For the urinary issues, I've tried everything: meds, Botox, therapies, sacral modulator, everything. I'm tired of the embarrassment this lends and the countless UTIs. I've come to decide to have a urinary diversion or Mitrofanoff in February and end this once and for all. I'm at peace with this surgery and am ready for the freedom I'll have.

But here's what brought me to this forum. On top of this, I've always suffered from worsening GI symptoms, mainly diarrhea and incontinence due to the variability of my symptoms and my weak muscles in that area. I've seen several GI's and the only thing they've found is that I have severely rapid motility (stomach emptying) and IBS, known as dumping syndrome. I know... ridiculous name. These symptoms worsen my fecal incontinence and are socially and physically draining. I recently saw a colorectal surgeon hoping he could help me with an alternative like an artificial sphincter or something. Sadly, he said those alternatives have been taken off the market and the only thing he could do for me was a colostomy. I was thrown off by this as I surely thought there was something else I haven't tried. I left that appointment thinking I'd never choose such a thing, but the thought has been lingering in my mind and the idea of never worrying about making it to the bathroom again is honestly appealing. Maybe I'd actually have more life to live freely than I've ever before? But maybe it'll give me more problems like bag leaks and obstructions?

If anyone can give me their thought process on their journey, I'd love to hear. Am I crazy for considering this? I realize many people don't have a choice in theirs, but if you could have chosen, knowing what you know now, would you do it again? Anyone have a similar situation to me?

Thanks for listening. Looking forward to the conversation ahead.

Angelicamarie
Nov 24, 2018 9:45 am

Csladybug... I read your post 4 times, each time I logged off to give it thought. You're a warrior now, for a different reason, but yet you are. Thanks so much for sharing!

By no means do I hold a medical degree. Reading your post, it appears you're out of options. I too had two choices, have the surgery or die?

If and when you decide what your decision will be and you return, I will be here to support you. I will keep you in my thoughts and prayers.

I'm sure you wanted to hear something else, but each journey is so different. But you're at the threshold, but have not crossed. Then and only then, I feel my journey might help! Good luck!!

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Bill
Nov 24, 2018 9:48 am

Helol Csladybug. Welcome to the MAO site and NO! you are not crazy for contemplating this and all the other options which might or might not be available to you. My own stoma came about from what the medics term 'elective' surgery, meaning I 'chose' to have it done. This, in no way reflects the angst and deliberations I went through to come to this conclusion. It certainly did not feel as if it was in any way 'freedom of choice' but more being forced into by necessity.

My story began with a botched operation on haemorrhoids which left me faecally incontinent. Like you, I tried all sorts of things to try to fix the problem and nothing worked. It is difficult to concisely summarise  living with incontinence but as you will know, it is not easy. The worst thing for me was the excrutiating pain, which I later found out was caused by the pressure of faeces on a prolapsed anus. Having tried unsuccessfully to sort that one, I reluctantly felt that a stoma would be the best solution to a bad deal. I made it very clear to the surgeon, that I wanted to irrigate (as I had been doing this anally for years) so he suggested a colostomy would be best for my needs.

I have had my stoma for quite a few years and can honestly say that I would not want go back to the way it was when I was incontinent. Yes! There have been few few adjustments to be made, especially in those early days when I was plagued with leaks and wafers falling off. However, having found practical solutions to those problems and settled down into a routine of irrigation and no output during the day, I cannot think of anything that would persuade me to not want my stoma. I have only one regret and that is that this thing should not have happened in the first place. After that, I have simply learned to live with it and make the most of a much improved lifestyle.

Best wishes

Bill     

Puppyluv56
Nov 24, 2018 11:52 am

Hi Csladybug,

Welcome to MAO! You have found a very informative and friendly site! Most of us on here did not have a choice in the matter and would not have survived had we "chosen" to not have our surgery! I had a rectal tumor but had had radiation years ago to the cervical so had thinning of the walls and even though chemo had completely taken care of the tumor, my cancer was a high grade, aggressive kind and never presents in the rectum so all my doctors and the tumor board all agreed the surgery to include a colostomy was the safest way to go. Not the best choice as far as I was concerned. I had not made my mind up until the last minute! To have gone through all that and still live, seemed wrong! So Betty was born in April 2018! There were many adjustments to be made but once you find what appliance works the best for you, life is good! Having a colostomy, you can irrigate and not have to deal with output except on rare occasions! Having fecal incontinence would have to be so much worse than wearing a pouch! I never had to deal with that but I suspect dealing with that would be horrifying! We all live full lives and do everything we used to do prior to surgery! We just have to plan a few minutes more due to supplies but you can poop away and no one will ever even know! Lol

Past Member
Nov 24, 2018 12:52 pm

Good morning CsLadybug,

I'd like to echo some of the thoughts already expressed here. You're right in saying that most of us had no choice in having the colostomy, but it isn't really a stretch to put you in the same category of having no choice. There are worse things than living with a colostomy...and fecal incontinence would be one of them to my mind. It is a major surgery, of course, and there can be problems with it, but things like leaking bags can usually be dealt with...irrigation being a great way to do so. One thing you might ask your surgeon before making your decision is if weak abdominal muscles due to CP might make you more prone to developing a hernia. Having a colostomy does make you prone to developing one of those and that might necessitate further surgery. That would be one answer I would like to have from my surgeon before I decided. It's all about improving quality of life and being as young as you are, you have a lot of life ahead of you to enjoy. My best wishes go with you in whatever you decide to do.

 
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freedancer
Nov 25, 2018 10:22 pm

I, personally, have only had two leaks so far. Both were because I was allergic to the skin barrier wipe they changed me to and the bag came undone. In your case, I think not having to worry about if or if not you can make it in time to the restroom would be a great relief to you. The only time I have to worry is if I eat too late in the evening. If I do that, I am up all night emptying everything out. My journey was not my choice. I ate supper one night and the next thing I knew, I was being wheeled into surgery. I spent three days in the Intensive Care Unit and 8 days in the regular surgery unit. My whole way of life switched on me in a matter of hours. My whole lower colon had just up and died with no reason. Even the doctor and pathology couldn't find a reason. Then, I suffered horrible pain for the next 7 months, lost over 40 pounds, and could hardly eat a thing. When I went back into the ER after a horrible 2 days of pain, I was rushed into surgery again and had a new ileostomy built as the other one had strictured shortly after the first surgery. However, that all being said and done, I am doing pretty well now. Everything is working great! I do hope we have helped you to understand a little more about this surgery and life afterwards. Good luck to you!

Csladybug
Dec 02, 2018 6:36 am

Thank you all sincerely for your responses! I feel more at peace with this decision and will proceed in the spring. Advice for the post-operative experience is welcomed. Grateful to have this community as I embark on a new chapter.

Puppyluv56
Dec 02, 2018 10:48 pm

Ladybug,

Hope your surgery goes well! I am sure it will and you will adapt to the new way of life quickly! It is all just another day in paradise! One we are all grateful to have.

Puppyluv