New member looking for advice

A long while ago I supported a pupil with their stoma and we used a stoma band which came in at different depths and different levels of support. I know M&S do the underwear and I imagine they will expand their range over time but it might be worth trying a band in the first instance to see if that works for you. 

I am not an expert in the field but also have a friend who recently had a stoma and she purchased both the underwear and a band to see what felt good for her. 

Maybe get a coupe of options to begin with to find what works for you. 

Hope that helps a little 

MelanieRose

Thanks for taking the time to reply. That's useful advice and I'll certainly look into it.

Silly thing is that in a couple of months I'll be sorted and probably wondering what all the fuss was about. 

Thanks again.

Regards,

Mike

Hi Mike,

I'm a bt late to this. I'm female and use M&S pants now and find them a cut above others I have used over the years, plus cheaper, well made and easily  washable. By now you may have found other suppliers but, if not, if you Google there are a number of them. Or ask your stoma nurse.

I think the M&S mens' may seem highwaisted but you may find that is to cover the bags - some stomas are quite high. You'll know by now how you feel about yours.

One thing to bear in mind is the elastane content of the material from which they are made. During chemo I had a reaction to the drugs and found pure cotton was more comfortable for me as I am allergic to latex. That is less important now so I am OK with the M&S one - higher content -  even in this heatwave. The elastane helps keep the bag on even when a bit overfull. Others manage with ordinary underwear  perhaps with a waist belt that attaches to the loops on the side of the day bags. You can get a free sample from your bag supplier or your stoma nurse can add the belts to your prescription.

Hope this helps. And you might find the bladder cancer forum useful too. There are many of us on there with urostomies. Plus the Urostomy Association website if you haven't already found it.

All the best,

Latestart

I've just discovered this forum. I had a colostomy and urostomy fitted during an 18 hour TPE surgery on May 6th. I've been looking for something to hold the bags in place, mostly during sleep. I read your comment, googled stoma band and it's exactly what I've been after! Just wanted you to know how useful your comment was to this newcomer. I'd been toying with the idea of making myself something like a stoma band out of a pair of tights, but now I don't have to. Thank you. 

Hi Wurble. and welcome to the stoma group.

I’m glad you’ve found us, and hope you’ll continue to find it helpful to be here.

I also had a TPE-there aren’t many of us who’ve been through it, so it’s good to have you join us. 

Your surgery is pretty recent in the world of TPEs-how are you getting on with your recovery now? I hope all is going well for you-I found it did take a long time to feel fully recovered.

Sarah xx

Hi Sarah.

Thank you for your lovely, welcoming message. I'm sorry its taken me so long to reply, I've had a few rough days. Despite these bad days my recovery is going very well. I was fortunate that I was very fit before the surgery and that has really helped me. 

I am walking again, albeit slowly and painfully. But I was told, straight after the surgery, that I had foot drop in my right foot and that it was permanent. However, I had been trying to get my foot moving and have had some success to the point that I can now walk, at home, unaided. When I go out I use crutches, mostly as a precaution. I've fallen over a couple of times (right by the checkouts in a busy supermarket!) and it's most embarrassing. 

As well as the TPE I had an inch taken off my coccyx and sciatic nerves partially removed from both legs. Along with the nerve damage this seem to be where most of my pain stems from. But, I'm alive and that was by no means a given.

I had my surgery at St Marks hospital in London and this really was my last chance. It all started with colon cancer which quickly spread to my liver. I had 50% of my liver removed last year. Unfortunately while I was recovering from that operation the colon cancer grew to become inoperable. My oncologist (in Bristol) sent my details to St Marks in the hope that they could do something. They could but it was pretty drastic. I had a hard decision to make. I decided I had nothing to lose. Without the op I was going to die.

So, after a week of radical radio therapy, 23 rounds of IV chemo, 10 hour liver surgery and 18 hour TPE surgery I have, at last, been declared free of cancer!

I love this forum, though I'm a bit of a Luddite. I hope one day that I can help someone somewhere with my story. I think it shows that despite the odds it's important to never give up and to try and stay positive. I did and it got me through and gave me a second chance at life. I'm a very lucky man.

Sorry for the long winded response, I just wanted to lay all my cards on the table.

Thanks again, Sarah.

All the best.

Dom (short for Dominic) X

Hi Wurble,

You've had a lot going on I can see. Well done for persistence.

Falling is a nuisance I agree and here's how I've (mostly) avoided it. After my op (cystectomy only) I quickly moved from crutches to 1  stick to walking poles. I started to use the poles originally years ago in the Alps where they were great on rough paths up and down slopes. I've had musculoskeletal problems for many years and more recently osteoporosis and now, since immunotherapy, peripheral neuropathy, but have kept fairly fit throughout by walking daily at speed - not as fast as before but better than a creep. I found crutches or stick didn't help with balance and slowed me down. 

Straight after the op I realised I had to straighten up - I looked as though I was dodging the next potential blow!  The poles helped keep me upright - and I've continued to use them in the years since because as well as that you can open you chest,  walk faster and swing your arms in a more or less natural way. If you do decide to use them I suggest poles with springs in them (damped) as they protect ankles, knees and hips. I have had a (temporary)  dropped foot and that used to be quite jarring without the poles.

I hope your progress continues and your fitness improves quickly.

All the best,

Latestart

Hi Dom

It’s really good to hear from you again-my goodness what a huge amount you’ve been through! 

TPE recovery on its own was definitely not linear in my experience-sometimes it felt quite up and down in the more difficult days post recovery. My odds of survival were put at 30% but I’m  glad that my surgeon discussed that with my partner and left me out of that particular chat! I would still have gone ahead, despite not being a betting woman, because I’d still have believed in that 30% as I had complete faith in my excellent surgeons. I’ve had that important second chance at life, and I’ve never regretted my surgery. 

Two different hospital doctors have told me that they see better results through treatment and recovery from patients who maintain a positive attitude, so I did try to keep that up. I was not in a good place physically at the time of my TPE as two months prior to this I’d had open abdominal surgery to attempt a radical hysterectomy (which failed) and had 25 staples in my wound which was newly healed when I was opened up again for the TPE. My cancer had become very aggressive and spread over my womb and bladder so I was in a significant amount of pain  waiting for the TPE to happen. 

I can’t imagine the extra difficulties you faced in having some of your coccyx and sciatic nerves removed. I discovered that problems I was facing with my hip were not correctly identified and were ignored in a scan I had for a further unconnected surgery in 2023, so unfortunately now I’m in a situation where I have severe osteoarthritis in both hips, knees and my lower back. I need at least a right hip replacement but it’s too risky for me to have this as the chemo for my cancer gave me a pulmonary embolism, and I had a stroke 2 years ago.

I have much less chance of surviving having my hip replaced than I had of surviving the TPE, and I think I’ve probably taken enough risks now not to go ahead with a surgery my orthopaedic surgeon says I’d be lucky to get through. 

It’s very frustrating to get through so much and know that my arthritis will not improve but will get worse. However, I still manage to on holiday abroad with assistance and cope with help in my daily life. I do rely on my powered wheelchair when I go out, but I’m lucky to be here at all! 

I hope you’ll keep interacting in the forum despite being a Luddite! It can seem difficult to find your way around at first but gets easier. There are not many of us who’ve had the TPE, and stories of hope and positivity are very much welcomed here. 

I hope your recovery continues to go well-I found it crucial to accept that it’s not a quick process, and not to let the difficult days pull you down. My surgery was 6.5 years ago now, and it’s incredible how much our bodies can adapt to a very new way of life.

Sarah xx

Dear Sarah,

I'm sorry to hear of your problems with hips, back and knees. You sound as if you have worked things out but I wonder if you have ever talked with a good Pilates teacher? Mine saved me.

I was lucky enough to meet.such a woman (before the cancer) at a time over 20 years ago  when I was in  terrible  pain in those areas.

She taught me to strengthen my joints and I got a good supportive mattress and a couple of special back chairs to be able to keep walking. I also studied the Axander Technique to improve my posture.

Over the years, I have accumulated 5 or 6 different back problems but am very mobile,  mostly pain free and most people don't realise there is anything wrong with my joints.

And when it recurs I can generally fix things myself. Luckily, after better treatment for osteoporosis, my bones are not too bad -  I don't have any spinal fractures. And the osteoarthritis is under control too with walking, 

That's lucky as sadly my teacher has now retired but the things she taught me, especially to strengthen my core and pelvic area still work. I found it hard to work on my core after cystectomy but now have reached a level of confidence to allow me to do matwork and begin to think I could restart  reformer. 

I won't go to an ordinary class for either type - they're usually too full and the teachers can't check every one. But I did find a one to one teacher for matwwork and possibly also another for reformer.

I have been reviewed several times by arthritis specialists and, apart from a spontaneous hip fracture, as I walked along the street (the original osteoporosis pills failed) I have not found I needed their treatment. My titanium hip is symptom free.

I hope to keep this going for the rest of my life. And perhaps you might be able to get some support in the same way. 

All the best,

Latestart

Hi Latestart 

Thank you for all your advice. Yes, in answer to your question, I have spoken with a Pilates teacher who owns and runs a local studio. 

The situation with my hips especially is that my right hip is bone on bone, so there is no cartilage there. As I’m sure you’re well aware, that can’t be reversed. My pain levels are less than they were, but I still do have significant pain which I’ve just learned to live with. I can do some leg exercises as directed by my physio after I had my stroke, but that’s it at the moment.  

I am unable to go on to the floor, which I appreciate might be a simple move for others, but not me. Even if I were to get on the floor, I wouldn’t be able to get up again! I cannot walk at all unaided nowadays. I can get around the house slowly on two sticks or my crutches, but cannot walk at all without them, not even a few steps.

After discussions with the tutor, it was clear it would not be possible for me to do any classes, and one to one was not an option as the issue is me not being able to go on the mat. 

It seems that your mobility is very good and you can do a lot of walking, which is great, but unfortunately I cannot. You are lucky to be able to do this and live mainly pain free. I’m afraid that’s not my reality. I cannot walk without assistance, I hear my knees clicking with every step I take on my sticks, and if I try to do too much, the pain is unbearable. 

Perhaps if I had been told about my scan results earlier I could have been able to do more to help myself or have a hip replacement, but I had no idea of the severity of my condition because no medical professional told me my results. Now it’s too late.  I’ve got past that now and accept what’s done is done, but I cannot have unrealistic expectations of what I can do, or how this will progress:the surgeon has been very clear on that. 

It would seem that our situations are very different, but thank you for taking the time to offer constructive advice. 

Sarah xx