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 would try to see a dietician first. I will have a colostomy one day but I am putting off while I can. Reducing food intake and no food in the morning had massively helped me.

I can't add any info but there are a couple of fb digital content who have great videos about life with colostomy. I found kya jeub really honest and informative.

Thanks so much for all the helpful and very supportive advice. I really, really appreciate it - truly can't say how grateful I am.

I have seen a dietician and have followed various bits of guidance quite carefully, but I can't really afford to reduce food intake. Since I've had this issue, I've found it hard to eat enough because of the general discomfort and stomach upsets and my BMI (which was already on the low side because I'm just naturally a bit skinny) went down to around 15 or something like that. This is actually one of the main reasons that it's been suggested, because even though I'm doing my best I still can't put weight back on.

I'll definitely take a look at the instas and resources some of you have recommended - and the thread, which I haven't seen. I do feel a bit rushed in terms of the decision, but as far as I understand there just happens to be availability for the surgery so it would be helpful (although not necessary) to make a good decision on it.

I kind of try not to give it too much thought space. I feel like it already takes up a lot of my time and I don't want to spend even more time thinking negative thoughts about it! But at the same time, I'd love to get something resembling normality back, especially with three children and their various things to organise and get to, and being back at work.

You poor thing. You've been through a lot and absolutely don't sound pathetic at all. I can imagine how much it takes out of you, physically and mentally, having to manage this disability.

I wanted to make a point re you not having many people you can talk to openly about this. I have a serious (but totally different!) condition and have found Facebook groups for people with my illness to be invaluable. I would bet there are definitely groups for people with CES and for people with colostomy bags and you'd be able to talk freely with people who understand your situation and might be able to help clarify your thinking on this big decision. For me, as lovely as my friends and family are, there's just nothing like being able to talk to people who 'get it'.

As part of my illness, I had a major surgery to have an irreversible device put in my body to manage my condition. I didn't really have much say in it, as I was so ill at the time, but part of me wishes the medical professionals had given me more time to see if it would get better without this surgery. It's a big deal to have something so major. On the other hand, in my case, the surgery and device immediately solved the issues I was helping and enabled me to leave hospital and live a fairly normal life, which was something I longed for while so ill. So I can totally empathise with the two sides of your decision. Best of luck.

Have they ever suggest a sacral nerve stimulator? Many have them for bladder and bowel problems and incontinence. I have one as I was injured during the birth of my daughter.

They give you a two week trial before going ahead with the permanent implant. They can be great and it’s a very minor surgery.

You sound really brave.
Like many others on here I had an ileostomy for UC and then had it reversed 9 months later. It did give me my life back.
From what I remember a colostomy is actually easier to manage than an illiostomy and might really help you to live a less painful and anxiety inducing life.
My stoma nurse was the loveliest lady and I'm sure yours will be too. They know their stuff and she will be able to talk you through it .
I hope that whatever you decide your life gets easier.

What about an ACE procedure? Is that an option. You have a 'stoma' created so you can pass a catheter through it and wash out your colon that way. Not quite as invasive as a stoma. It would give you back some control.

Hi, I also have a spinal cord injury with neurogenic bowel. I have been told that eventually I will need a colostomy.

For now, I manage with medication (Prucalopride) and transanal irrigation. It involves flushing the bowel with water daily or every other day. It has been really effective for managing constipation for me, so could be worth a try before surgery as it is not too invasive. I use the Aquaflush Lite kit but the Peristeen is the most popular I think.

Also, if you are feeling like you can't talk about your condition in real life, I recommend www.backuptrust.org.uk. You can chat to someone else with a spinal injury as a one off or have a mentor

Thanks again for all the tips! @lyrebird1 I did speak to someone from Back Up a couple of times and they have been great, especially in the beginning when things were a bit overwhelming.

@BabyCloud unfortunately the sacral nerve stimulation isn't something they feel would be particularly effective in my case. Which is a pity, because it sounds like a way less invasive option.

@Toddlerteaplease I'll definitely ask about the ACE procedure - I wasn't aware of this, so thanks v much for the tip.

I have similar issues with my bladder (retention) and have to self-catheterise, but I find this pretty easy to manage. It's mainly about sticking to the schedule, because I don't get a lot of sensation so I could easily leave it too long. The hope was that things would gradually improve after surgery and I'd not need to rely on catheters, but there hasn't been much change. But it's not troublesome to manage, so once I got used to it, it wasn't bothering me much at all.

The bowel management is another story - I'd taken to doing it in the evening, which inevitably led to disturbed nights but meant that I'd be better by the morning! But DD3 is going through a bit of an extended night-time screaming phase right now, so it's not really practical for me to be stuck in the bathroom for ages during the night!

I'm so sorry that you're in this situation.

I don't think they should be pressurising you into making a decision quickly - as far as I can tell, it really isn't life or death, but more, how you're going to manage things going forward?

If I am right (I might not be, please tell me if I'm not), then it's ok to maintain the status quo for the time being, but you could decide at any point in the future to go ahead with surgery.

I suspect that going ahead with surgery would be the best thing for you, but you should be allowed time to make this decision (This isn't a cancer scenario where time is of the essence).

Good luck whatever you decide and when.

Yes, you're right, there's no urgent news to do the surgery. I think it's more from the point of view of there being a window of opportunity!

The one thing they have been insisted t about is the need to gain weight. But I'm really struggling with this, because I basically have a chronic stomach upset. This morning has been particularly uncomfortable and now I'm feeling both sick and a bit sorry for myself. But I'll be taking DD1 to hockey with DD3 in tow shortly, so I'm hoping for the best!

I remembered I'd posted this and just wanted to update since you were all so kind in sharing your experiences and advice! In the end, I did go ahead with the surgery - although not till December in the end. It has honestly been transformative. I do have the option to reverse, but quite honestly, I'm not sure if I will. I can't even express how much it's improved my life not having to worry about it all the time and spend hours on bowel management. I actually feel like myself again!

There was a hope that I might regain some function and sensation, but so far there isn't much improvement. I'm still having physio and the weakness in my leg and pain in my lower back is improving all the time, but I am still having to self-catheterise. One new "fun" development is that I've started getting occasional bladder spasms which are incredibly painful, but apparently this could actually be a good sign that my bladder is trying to work again.

Somehow I felt like everyone would be able to "tell" that I had the stoma, but it's really not like that at all. I do have a few tops I don't wear any more, but it's much subtler than I thought it would be.

So pleased it’s worked so well for you op. I know two people with stomas and both feel like you. One is a young adult and proudly wears cropped tops and bikinis with it on display, lots of positive comments too, and she reckons a great icebreaker in pubs, go figure!

My son has a neurogenis bladder. His is now mangaged by a mitrofanoff, a permanent channel made of his appendix tissue from his bladder to his bellybutton.

He gets awful bladder spasms, he finds oxybution helps (there are a few other meds you can try if this doesnt work), keeping very hydrated and sometimes catheterizing more often.

There is a ring of pain when using a catheter when you have fully emptied and you hit the bottom of your bladder. This unfortunately has to be done, as you know to prevent UTIs but can set off spasms. Taking the meds before emptying can help

Im so glad you have had such relief from your operation. I have a family member who has had the same op and felt exactly the same way.

I hope your bladder is waking up and you continue to mend. You have come through such a hard time and you are still going. You definitely rock!!!!

I had one for 10 months, which I then reversed. It gave my body a chance to actually heal, the difference in being able to sleep and recover was immense and I hadn't realised how much my body was struggling.

I had been getting up loads in the night and functioning with this constant low level anxiety, I didn't realise until it went away just how bad it had become.

So glad to hear it has helped OP, you have been and are being so brave facing so many medical issues especially with three young children to look after. Really hope that things continue to improve for you. All the best.

So sorry this happened to you. I also developed CES from childbirth 18 years ago. Thankfully I can now walk, albeit with a limp and numb feet, but my bladder and bowel never came back. I ended up getting a continent stoma for my bladder, but still have to do a pretty hideous bowel management program (IKNKN).
I do get problems with adhesions, and the bowel consultant suggested a loop colostomy, but I don't feel ready for two stomas.
I can't really advise, as I haven't figured this shit out myself, but wanted you to know you are not alone.

If you have Instagram look up Adele Roberts, she has a stoma albeit due to bowel cancer but is an inspiration. It may be available without an account but she will give you an insight into her experiences.

Hello!

Just to chime in, I have a reversible colostomy and I've had it for nearly 8 years now.

Try not to panic! It is a huge life change but if you decide to go for it, you'll soon find your quality of life is so much better and will probably see the benefits immediately.

I tried pudendal nerve stimulation prior to the surgery, but it sadly didn't work for me. Could be worth a try? Mr Chris Chan (Harley Street) offers it, and he is an amazing consultant in general too (if funds allow).

If you did decide to go ahead, the first few weeks will be horrible. Having to deal with loud, uncontrollable gas we mortifying, but this absolutely petered away to nothing once I had recovered.

They are downsides. It's not all sunshine and flowers. Colostomies are easy to handle than ileostomies (afaik) but overall, I'd do it again. I weight life, eat what I like and have a very normal life with one.

Happy to answer questions privately if it helps!

Good luck and let us know how you get on xx

Thanks again for the support and suggestions. I still have time to decide whether to reverse the colostomy or not, but from where I am now it's a "no". The reduction in anxiety and the discomfort and inconvenience of the bowel management has truly been transformational. (I can't say my sleep is much improved, but that is due to DD3, who has never been a good sleeper since arrival and continues not to be!)

I was lucky compared to some that I've never had many mobility issues with the CES. I still have some low back pain and a bit of numbness / constant pins and needles sensation in one leg, but I can walk fine (albeit with a bit of a limp/foot drag on worse days). I've never found the bladder management terribly problematic since I began to self-catheterise, but it would be nice not to have to! The main issue is that I have no sensation of being "full", so I do have to stick to quite a rigid schedule to make sure I don't get distracted with the kids etc and leave it too long.

That's so good to hear. ❤