Feel like changing my look/clothes to feel better - anyone else?

Hi Skinnylisa53 

Reading your post makes me wonder if you’ve accepted having a stoma, which might be your first step to feeling better about yourself. You haven’t said which type of stoma you have, so if you let us know then others with the same type might be more able to help you out. 

I have 2 stomas, a urostomy and permanent colostomy, and I’ve had them for 6.5 years. Without them I wouldn’t have survived, so I found it easy to accept that this was my life now.

I wear the same clothes I wore before stomas, and didn’t feel the need to change to anything different-my attitude was that I didn’t want to be defined by my cancer or my stomas, so wanted to feel as”normal” as possible. I’m obviously physically changed, but that hasn’t changed the essence of who I am. I’m still the same person, and no-one would know I have stomas unless I tell them, which I tend not to.

I was always a big wearer of black clothing, so nothing has changed there, and it helps in not being noticeable immediately if I have a sudden leak from either bag. However, I do wear white trousers in the sunshine/warm weather! If I’m out for any extended period of time, I always carry spare stoma supplies/wipes/bags etc and a change of clothes in my bag-just in case, because I feel more confident in being prepared for an accident. This has happened to me, but is very rare. 

I am the same person I was before surgery, and just think of it as having a different way of going to the bathroom. I’d love not to have stomas, but that’s never going to happen so I don’t waste time thinking about it or wishing for something that can never be. 

I’m not sure that changing the way I dress could change the way I feel, so I buy clothes I like and feel comfortable in. However we are all different, and if you feel that a different wardrobe might help you feel better about yourself, then maybe buy some new things and see how you go? 

Sarah xx

Hi thank you for your message x

i have a colostomy the main issue is the wounds from surgery too all the pain that has caused as well leaking from the bags into the wounds making adjusting so much harder 

I feel I have lost me and I think I need to find the new me with the stoma and adjust things which is hard 

I am a 53 year old Taurus and fiercely independent and losing control of myself and the ability of bathroom things is the hardest part to adjust to 

I think I will I’ve changed clothes which is making me feel better that for me is a big thing I love clothes and that giving me some of a new me back I think I will accept this I just need to heal and then I think I can get there 

It must be very difficult for you right now, still healing from surgery and the huge change which has happened in your life.

I only had my abdominal wound to deal with, and I didn’t have issues with leakage from either bag into my wound to cope with. It does take time for stomas to settle down as you heal, and mine certainly changed shape and reduced as I recovered. I found it important to make sure I had the right bags to stop any leakages, making sure that the holes were measured carefully, and I tried many different types in the early days. Now I’ve settled into a good routine with products which suit me and I feel happy with. 

Loss of control is absolutely a big deal, especially when you’re getting used to things. Suddenly you have no control over a function in your body any more, and things can be unpredictable in the early days especially. I hope that as you recover, it will get better for you.

If new clothes would make you feel better about yourself, then you should definitely try this. The physical and mental aspects of cancer and major surgery are closely bound up together I believe, and feeling good about yourself is hugely important. 

Sarah xx

Wow your so so kind and amazing I really appreciate your kind words 

I think I’m going to be ok it’s just hard in the beginning trying to be ok but I guess it’s ok to be just ok 

thank you again I will try and make it and your words have really helped me to push through this hard times 

I’ve been dealing with this for a long time, but I haven’t forgotten the early days post surgery when I thought I’d never feel “me” again. Some days were so incredibly hard, with 2 bags to manage and unexpected leaks etc when I was already exhausted. Many times I sat and had a good cry when I couldn’t imagine my life ever getting any better.

But you know what? It did get better as I got physically stronger again. I didn’t have to rely on my partner for everything and started to regain my independence again after being ill for such a long time. Some days after surgery I was so tired I couldn’t even get to the bathroom to brush my teeth and had to depend on my partner bringing me my toothbrush and a bowl in bed, giving me bed baths because I couldn’t get to the shower. 

They had to clean me up, change bedding, and basically take care of me like a child, and that was hard! I went from an independent woman with a demanding job to a shadow of myself with no confidence. I didn’t know how it would ever get better. But it did in time, and time is important to our healing.

It can be hard for us as women who are normally the carers and nurturers to accept that we are going to be weak for a while and need help. But it’s important to recognise and accept that  it’s not a sign of weakness to need help. I also had counselling, in fact I’ve had counselling more than once in the past few years, and I found a lot of benefit from that. 

I cut myself more slack now, and I hope that you might feel able to do that too, and not put too much pressure on yourself to be bouncing back to “normal” life. We hear the phrase the “new normal” often, but I’m not a fan of that myself. Life is very different for me now, and I have learned to adapt to it and accept it, but it doesn’t have to feel normal-I just need to get on with it and make the most of it.

Give yourself time and some grace to be kind to yourself, and don’t feel selfish doing that. You have been through a lot, and are still going through a lot, but it’s possible in time for things to feel much better.

Sarah xx

Thanks  

your journey sounds hard too knowing you came back is inspiring 

I also had been poorly for some months and more from January this year work stress had a fall mum did too so I was caring for her between working who were not helping or cared!

i was losing weight more than i could manage and bing very low weight i was feeling weak sickly and not me after hospital stay which was not good pressure to eat with threats of sectioning which I have never known other than helping people with this in my job so it was scary and left after that additional pressure I had a scan then and the tumour was detected but because I left I wasn’t told 

I was forced to go to an eating disorder clinic I was ok with that as I thought they may help me I was only 35 kilos and worried I was going checking weight having chats I was ok but eating more I went for bread fibre and then things started to become bad I want going to the bathroom at all and I was feeling bloated thinking I was then maybe allergic to gluten went gluten free and still thing to gain some weight 

I still couldn’t go the GP’s gave me laxatives powders not knowing what this could be !!?? 
5 plus weeks passed no bathroom still I had to go back to the hospital scans checks detected the blockage and a narrowing of the colon mention of stoma but they tire me on steroids for a week and I went to the bathroom 53 times in 3 days 

painful but a relief ok things are ok 

home on steroids for 4 weeks I was ok not but ok a sigmoidoscopy and of may told me the tumour is 30cm and is cancer a CT scan happened days later and 11june I got the results handed a MacMillan pack and admitted 

went through the operation so I although I knew what a stoma meant had no time to think  

operation was on the 13th woke to the bag and this huge scar in pain drowsy had a line of people coming to talk to me I was so overwhelmed the only kind one was the stoma nurse 

I saw it the en wow this is not great but it was overshadowed by this horrible huge scar 56 staples that was the lot!!! This I felt then I wish I had died I cannot cope 

I had to have 8 central lines in my neck and one central line in my left arm a catheter this was hard 

I was in. HDU nurses were amazing but I just couldn’t move from the pain and all the things attached 

days passed family came wasn’t sleeping so not happy at all

food was not terrible as I’m vegan nothing was on offer 

I decided ok I have to make the decision to slacken the reins and be vegetarian as the soups were banging 

I was being given 3-4 because I liked them the care was so good

moved to a lesser ward care remained great met some amazing people which I still have contact with that friendship and connection I treasured and still do 

home was looming I was desperate to go but also so so scared how can I manage 

the staples removed so painful the scaring awful all open and infected but still sent home 

no home care was arranged I had to sort once home how can I cope with the pain the stoma the wounds and gain weight I was

as mentioned 6-10 leaks a day horrible 

leaks lasted 4 weeks 

wounds remain here painful and since getting a two piece bag and base I’m managing that better the wounds I have to manage more myself 

one thing I find hard is the lack of sleep I’m going to the bathroom 15 times a night drain empty clean bed and that’s all night 

I continue this still and says when this is active is mental it’s like projectile is that normal !? Is the stomach pain normal as stingy and sore some blood too many help there would so appreciate 

I will be ok like other shave in the past and are themselves like me new into this situation 

I feel better to talk as I’m not ashamed of this I’m proud I survived so far anyway I just didn’t expect it to be so damn hard 

Sarah your inspirational and I genuinely mean that!!!

Dealing with two that just makes mine seem litttel I know you would not agree but I think that just for me though make me think Lisa get on with it!!!

I feel as you stated about the start and how hard that was for you and needed to have help and that was guard’s much as the surgery the pain and the adjustments which like me also I am finding hard as I am a carer for my elderly parents 

my dad is 80 and disabled and we have carer help morning and night my mum is 77 and does the in between bits (she has no sense of smell!!! Haha)

I was the one that cared for her doing the heavier load and any hi no she needed to manage other things and her rock so the reverse side is hard to accept for me!!

I am stronger even just 2 months passing and having the issues and wounds but the wounds have made the facts of having a colostomy less of a factor and as I only get a little help I have had to manage this all myself and that’s making me more resilient 

My mum has been incredibly supportive though and our bound has become very much more special and we have a 30-45 minute walk every day chat about nothing and everything and we have both felt the benefits from just that!!

I love that time and how much we have together made things better as I am still having tests and scans as a lesion/tumour was detected at the time also in my right lung which isn’t connected they tell me to the bowel cancer but need to rule out any possible cancer issues etc so it’s still very much a thing right now too

i was offered a place called beechwood house for therapy and counselling but for mum too they messed up forgetting her which upset me greatly as I want to go but can only feel ok with this if my mum has this too for me to be ok with this knowing she’s ok her safety is more important than me being okay tbh!!! 

I am a fighter as I had ovarian cancer at 21 had to have a full hysterectomy chemo and radiotherapy that was also missed for 3 years and diagnosed 3 days literally after my 21st birthday and then was stage 4 I got through that but being younger stronger as easier and had no real

issues after in life only adjustment y was not being able to have children I was and still ok with that to some extent as I have forged a great life travelled lived overseas so for filled lots of other things 

I think this hit hard because of the change I’m dealing with but reaching out on this forum and heating your story and journey you have almost given me that kick I needed and I’m now going to as ahank you to you make this work and learn to accept my life with this and really give my to make me feel ok 

I know I am different and the same all in one and that’s ok I have to hope the cancer is gone fully and I will heal the wounds will settle the scars so t concern me which is weird it’s the healing which is what I hate now as there painful a daily management thing over the stoma too 

can o ask if I am allowed does the multiple bathroom visits settle mine most days is like projectile and so much erratically too!!

I have ent had an accident yet but I’ve only been out short periods and the two piece I have helps now as I can manage that and the wounds separately now that helps hugely 

I have learned how to eat well too back as a vegan but this time I’m going to continue eating well concentrating on protein which is making me feel better and a new found love of food too which I never thought I would be and now I’m about 40 kilos which believe me is the most I’ve been since I was a teen 

I want to get back to working and I know I will maybe forge another career I don’t know yet I feel I have a hankering to do this but it’s time in need now to get things in prospective and I am slowly getting there!

I am so grateful just that you replied and makes me happy I will eventually get to a point where is my life now and this is part of me now 

thanks you for your kindness and just time xx

What a lot you’ve been through…it’s huge amount for anyone to try and cope with. 

It must have been overwhelming to get diagnosed and then have surgery so quickly-so much to come to terms with for you. 

The scars will fade in time-I can hardly see mine now, so I don’t really think about it except to remind me that I got through this and I’m still here. That’s a LOT of staples-twice as much as I had, and I didn’t have as many problems as you have experienced getting them out etc.

Are you managing to get any sleep with being up so often in the night to empty? My colostomy is not nearly as active as yours, so I have never been up in the night with it. I use a closed bag, so it’s not one I need to drain-I just replace it every time it “goes”. Normally output is much more solid with a colostomy than with an ileostomy for example, so I have no experience of it being projectile.

I did use a drainable bag after my surgery as things were very liquid, but that improved and I was able to change the type of bag to a closed one. Are the stomach nurses still helping you? Have you got anything like Imodium to help out even in the short term?

You should ensure too that you’re getting enough protein in your diet as this promotes healing, and if you’ve gone back to being vegan it might be helpful for you to get advice from a dietician on how you could make your diet as effective as possible for you. I’m not vegan or vegetarian, but limit meat, though I still focus on getting as much protein in my diet as I can. 

Lots of people swear by certain things to help thicken the output-dry crackers, porridge, marshmallows and jelly babies for example. It sounds like you would benefit from professional advice to see if things can improve, as it will be exhausting for you to be having to deal with so much bag filling and emptying. 

I often get stomach cramps just before my stoma works, but these are short lived and disappear quickly. The only time I see tiny spots of blood is when I’ve been cleaning my skin and maybe rub things a bit too vigorously. There are no nerve endings in the stoma, so it’s easy to do that without thinking. 

You should definitely be proud of yourself for getting through this, and coping. The stoma nurses either from the hospital or whichever stoma supply company you use should also be a good source of advice. My supply company has stoma nurses as part of their team, and if I need to I can speak to them for advice and guidance by video call or a phone call. 

Sarah xx

Thanks again x

the stoma is sore and some of the slight liquid makes this more so I think because it’s new and adjusting to me etc 

I think because of the issues I have had is that cause and effects me a lot sleeping particularly is not great and is am lucky to get an hour to two slots at a time so I thinks that makes things seem much more difficult at the moment too

the activity is so erratic is solidish if that’s a word but then runny too it’s hard when I can empty the bag clean and then settle but within minutes it’s going again and again and again for at lea 5 times over sometimes 15-20 minutes and that’s like  but the friend I was in hospital with has similar issues so we have a daily chats through WhatsApp and we have forged a real connection that helps us both so much 

is starting to look ahead making plans which I think is a positive thing I can now drive again that was hugely positive for me love my car missed driving and feel more independent just from that!!! 

people I see now all say I look better and that’s making me feel better and I’m on the right path now so I know I’ll get there eventually but your advice has helped a lot and again I am very grateful for 

Hi Lisa

I must have been writing my reply to you at the same time as you were posting, so they appeared almost at the same time!

Multiple bathroom visits-yes, they absolutely slowed as things settled down. At first it seemed never ending but it got much better when my appetite improved and I was able to eat again. I did lose a lot of weight initially as I just couldn’t  eat, and I was also projectile vomiting every day which was horrible. I got no warning, so my poor partner was constantly cleaning up everything-good job they are not squeamish about vomit or poo! 

I was really pleased to read you have such a good relationship with your mum, and getting out every day for a decent walk is very good for our state of mind. I had a different surgery to you, and it was 3 months before I had my first “proper” walk outside, using a Zimmer frame to go round a nature reserve. Until then I had only managed to walk a little bit outside my house with help, so you’re doing really well! 

Getting back to work might be a really positive thing to aim for-having goals is important. Just don’t push yourself too hard, too quickly. I left work before I was diagnosed with cancer as my mum was diagnosed and lived a long way from me. Work was not flexible about getting time off and I needed this so I decided to leave altogether. I’m glad I did, as I was able to go to visit my mum at short notice and this was more important to me.

I’ve never been able to work again, as I developed severe osteoarthritis and I need a wheelchair to go out now-commuting would be impossible for me. I miss it sometimes still, but I’m happy enough to be at home full time.

Sarah xx