Feeling like it is too soon for surgery (colostomy)

[Kirova]

Back story is, I had a spinal cord injury when my third DD was born 11 months ago and subsequently was operated on for cauda equina syndrome.

A lot of the physical issues I had have improved - like weakness in my legs and back pain, which has almost cleared up completely after intensive physio. But the aspect which hasn't improved much at all is that I have very little bladder and bowel sensation and function. It's possible to "manage" but it does affect daily life a bit and the bowel issues are particularly tricky. I've had frequent constipation, accidents, almost permanent stomach pain and upsets... Sorry for too much information!

At my check up last week, the consultant suggested a (potentially reversible) colostomy to improve management and my quality of life. I've got a week or so to think about it and I'm really in two minds... On one hand it feels like it would be a relief. On the other, I worry that it would be even worse and would make me feel "disabled". It has been less than a year and I wonder if it's just too soon to make a decision on something that feels so drastic?

Any thoughts would be welcome! I find it super hard to speak about to anyone in real life, so I haven't been able to have lots of chats. I'm sure my friends and family would be supportive but I'm just rubbish at talking about it out loud.

I have a bit of experience with bowel surgery- I have had a partial colectomy myself and have had further surgery from adhesions causing small bowel obstructions.

Also, DH has crohn's colitis and was offered surgery in the past but said he wanted to avoid it and got a new treatment so has managed to avoid it so far.

I think, well think about it carefully as it is a really major surgery and you could end up with adhesions like me. And a stoma which may be reversible.. if you are managing how you are you could come back to it in the future. Don't be rushed into it anyway.

Best of luck whatever you decide.

Friend of mine has uc - she says - ‘get a bag get a life… ‘ for her it has transformed her life and made her able to do everything she wants again. Hers is permanent and life changing.

very hard decision to make but I’ve heard of other people that see the bag as enabling not disabling… living with constant bowel issues utterly ruined their life and the bag freed them up once used to it.

good luck with it all.

Thank you so much for getting back to me... Those two posts pretty much sum up my conflicting thoughts and feelings!

On one hand, it feels like a big step and I'm worried about potential negative risks. On the other, I'm a bit fed up with how things are now. The management programme I do does work, but I'm constantly getting stomach pain and bloating, I'm always worried about having accidents, I now rarely do have accidents but I have to spend a lot of time and effort to avoid them.

I have learned to live with it but it's draining, and I'd love just not to have to think about it so much!

I had a cystectomy (bladder removal) & urostomy formed 5yrs ago. Different situation to yourself, but my life has improved a tonne post op. I argued that I didn’t want a stoma, despite my specialist saying it’d be the best thing going forward. For the most part, I wouldn’t be without it now.

It's a really big and daunting prospect. Are you able to see a stoma specialist nurse prior to surgery to see if they can address any queries or concerns you have and be able to put your mind at rest.

I know a woman who has one and she decided not to get it reversed later on. It just made her life better.

Good luck!

OP, if you have been attending specialist rehabilitation services, can you talk to different members (OT, physio etc) about your recovery since the injury, and what they would see as the reasonable possibilities for further recovery in the future.

A week or so to think about this operation doesn't feel like a lot (or a reasonable) amount of time for this kind of operation. Can you get a second opinion on it?

It's your body, your life, and I wish you all the best no matter what you decide.

Yes, I will see her next week - so I think that will be helpful. And they're used to talking about it, I guess, so it won't be embarrassing!

I have been hoping for some improvement, but realistically there has been little change post surgery and I still don't have much bladder and bowel function or sensation at all. I find the bladder issues easy to manage, the bowel problems are much more inconvenient and uncomfortable, and much less well under control too.

I really do feel like I've been trying hard and doing everything right! But it just doesn't go so well. I'm a bit tired of having stomach aches and upsets throughout the day, having to spend hours in the bathroom... I know there are worse things and I must sound pathetic. It was a birth injury and DD had a very traumatic arrival and was premature, so it was all a bit crazy and I don't know that I've fully processed it all yet!

Thanks for this! Yes, I have had conversations with them and they've more or less advised that the aspects which have improved (numbness, back pain, leg weakness and limp) will continue to improve and may eventually be completely back to normal. But because there's been very little change at all with bladder and bowel function, they don't think it's very likely to improve significantly at this stage.

Bless you. It sounds like you have had a really rough time. Bowel issues can be incredibly debilitating and to be in constant pain and spending a lot of time in the bathroom is obviously having a serious impact on your quality of life. You do not sound pathetic, you are absolutely allowed to feel the way you do at the moment and specialist nurses are there to give advice and support. The nurses are very matter of fact regarding normal bodily functions so there is no need to feel embarrassed. I hope they are able to give you the support and advice you need to help you make a decision about surgery.

I have had a stoma 21 yrs. Ileostomy though not colostomy. It gave me my life back. You sound like you are struggling at the moment and the stoma would potentially make things much much easier.
Having one isn't the worse case scenario at all.
I would never have had a reversal.

If it could be reversible why not try?
You might (I think will) be pleasantly surprised.
Good luck xx

And you absolutely do not sound pathetic

I have Crohns and needed an emergency ileostomy that was subsequently reversed 10 months later.

After the initial few weeks of acclimatisation, honestly it just became one extra normal part of my life. Within two months of being at death’s door I was on holiday in Wales. I admit that I knew where every accessible toilet in the area was, and I needed to use them too, but the freedom it allowed me otherwise was worth it.

I had more medical issues with the reversal than expected but I came through them and am 9 years past that, with completely normal bowel function.

I appreciate your medical issue is completely different to mine, but be guided by your consultant and nurses. They have your best interests at heart.

Thank you so much for all your kind replies. It's so nice of you.

I have to admit - and I try not to even really think this - I am struggling a bit. I'm always worrying about accidents, I'm always a bit uncomfortable or in a bit of pain with stomach cramps and bloating during the day, the whole "management" takes ages and I have to make sure I'm near a toilet for ages afterwards. I have to kind of actively decide that it's NOT getting me down, but I'm actually getting a bit tearful writing this because it has been hard. Especially with three young girls and being back at work!

I'll definitely go into conversations with an open mind next week.

Hi @Kirova@Kirova

Sorry for the double tag, wouldn't let me delete! Anyway... I had an ileostomy for a while, I had ulcerative colitis and had a sub total colectomy, besically hoiked out my whole large intestine. Honestly it was life changing. I had years of pain, unpredictability, accidents - sometimes in public - and not being able to go places, make journeys, lift anything (including DD) as as soon as I engaged my core muscles for anything it was a race to get to the loo.

The bag was great - I had some issues, leaks in the first few days and sorellness on the skin as a result, but there's a process of trial and error of different types and shapes of bag to find the right one for your body. So I don't want you to think 'oh, hell, it'll still be shit everywhere, just in a different location!'

It was amazing, honestly. I could go places, go a few hours between needing the loo (to empty it), no one knew it was there unless I told them. I did have to choose clothes a little more carefully to make sure the waist band was either above or below, rather than directly on the stoma, but that was it really.

A colostomy is a bit different (and easier I think) in that you still have your large intestine doing its thing, so you should only poo once ish a day, rather than an ileostomy that is constantly trickling away and neeing to e emptied 4/5 times a day.

What I found really really helpful was the stoma nurses were able to put me in touch with another patient that had had the same surgery and I could ask her all the questions (via WhatsApp) about actually living with the stoma. I would really recommend you ask the stoma nurses if they can do that for you.

Best of luck with it, it really is a big thing, but it can be absolutely life changing too.

I really hope surgery is transformative for you and gives you your quality of life back. We are here if you need us x

I follow a business on instagram called DinkyDownes which is ran by a couple and one of the mums has had a stoma recently due to a birth injury and often writes about it on her stories so may be worth giving them a follow. Good luck with your decision

@Kirova , did you see the thread a few days ago entitled
I have a colostomy - AMA
( ask me anything )?

It sounds like you've had a real time of it OP and probably still haven't got your head around it all. It's a hard decision to make and it doesn't feel like you've been given much time to get your head around it and make it. If there's the potential to reverse it then that hopefully gives you options for the future.

One of my closest friends had a very traumatic birth and ended up with a colostomy and stoma as a result. We met when our DD's were about 3 months old and I had no idea until she said something. She ended up having it reversed after about 12 months and has been fine since. Our DD's are 9 now and I she still struggles sometimes with what happened to them both.

Be kind to yourself OP and make the decision that's right for you. If you need more time to make that decision then try to be brave and say so.

Poor you @Kirova it sounds awful and you seem to be very brave managing such a drastic complication whilst downplaying the difficulties.

Have you heard of the Masic Foundation?

masic.org.uk/

They support women after birth injuries and you may find they could give you some helpful advice and support.

Good luck whatever you decide. It's major surgery and I don't think you should be bumped into making that decision against a short timeframe. Let your consultant know you want more time to think about it.

I had ulcerative colitis and now have an ileostomy, saved my life and gave me a life. Would never go back to how unwell I was before.

I think you need to ask some questions. I'd suggest. What is the purpose of it being temporary? It it hoped that bowel rest might improve the condition? What are the risks for reversal of the type of colostomy intended? What are the chances I will regain bowel function if its reversed? How long will I have it? Is any of my bowel going to be removed? Will I have any difficulty with absorption of food and liquid? Will I recieve dietary support and monitoring to ensure I don't have difficulty arising from poor absorption?

You don't sound pathetic at all OP. It sounds very difficult and upsetting and I hope that whatever you decide, things get better for you soon.

Ileostomy here , had my first on a temporary basis about 20 years ago due to emergency and it was reversed within six weeks - honestly I wish I had kept it as crohns never went into remission. I chose the second one in 2016 and there’s no way they are ever reversing it , it’s a cliche often used but it did give me my life back

Having Crohn’s disease, a stoma was always a terrifying thought for me, terrifying being an understatement! When they told me I had to get one I thought of every and I mean everything on how not to have it done. Operation went ahead and I can honestly say I wish I had done it years ago. It gave me back my life and it’s been absolutely fabulous!