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Clothing advice please

Postby Twinkle7 on Thu Mar 06, 2014 5:41 pm

Hi, I was discharged from hospital last week with my first Foley and have been in bed ever since, so currently I am in nightclothes. Next week I have to travel in my wheelchair for a hospital appointment to discuss having a suprapubic.

I feel a bit silly asking this, but I really have no idea and am quite overwhelmed - what sort of clothes are good for wearing with a Foley? District Nurse & hospital Catheter Nurse couldn't advise me and we don't have incontinence nurses where I live.

My wheelchair is tightly moulded with a pommel between the legs, so I can't use a leg bag on my thigh, which is what it suggests in the booklet the hospital gave me - there isn't any room. I have a wide strap beneath my chest and another across my hips. For this first trip we are going to try and attatch a nightbag to the arm of the chair - how embarrassing. We capped the Foley off (on hospital advice) to come home and I wet myself.

I am assuming I would need to wear some loose fitting trousers and have the tube come up and out of the top, between the two straps, over the arm of the chair, or a skirt and have it coming out of the bottom and back up to the bag. Either of those would mean going against gravity, I'm not sure if that's a good idea.
I hope it's ok to be this personal, but I haven't even worn underwear yet, so I'm not even sure which way up/down I should put the tube when I do. Also, I think sitting on the Foley is going to be painful (I can only lay down at the moment).

My wardrobe consists of tight fitting leggins and t shirts, long jumpers & maxi dresses so I think a drastic wardrobe change might be necessary and I'm not sure my mental & physical health or budget are up to it!

I can't find any information or advice about this sort of thing - I wondered if anyone could share their experiences and tips? I am female BTW.

If I have a suprapubic am I looking at yet more different clothes?

Thank you for reading.
Twinkle7
 
Posts: 4
Joined: Thu Mar 06, 2014 4:39 pm

Re: Clothing advice please

Postby RosyHannah on Fri Mar 07, 2014 9:26 pm

Twinkle,

Sorry to read that you are feeling quite anxious at the moment, it sounds like you've been through quite a lot. Sending you my best wishes.

Whilst I cannot offer you specific advice (hopefully some of our forum users will read your post and be able to offer you help) I would suggest you speak to your doctor and ask that they help you find out the answers to your questions.

Please do not feel embarrassed asking any questions within our forums - getting people to talk is very important to us.

Do keep in touch and let us know how you are getting on - your journey may be able to help others in the future.

All the best,

Rosy
RosyHannah
 

Re: Clothing advice please

Postby Twinkle7 on Tue Mar 11, 2014 1:06 pm

Thank you Rosy.

Well I made it to the appointment! We put a draw sheet on the wheelchair in case of accidents and took spare clothes. We fed the Foley tube down through the leg of my pants and strapped it to the top of my thigh. I wore a long skirt and my husband rigged up a sort of hook arrangement, so we could use the nightbag resting against the footrest with the drainage tube running down the top of my leg, under my skirt. I put a blanket over that to cover my embarrassment. It was extremely painful and distressing, perhaps partly because I went from not needing anything like this to it being an emergency overnight and now I need permanent catherisation, but it meant we didn't have to cap off or hang a bag on the side of the chair and I didn't wet myself.

It was decided at the appointment that I am going to have a supra pubic next week. The Consultant was extremely nice - she thinks it will sit slightly above my wheelchair's pelvic support straps, then I would need to have the bag on my lap, just below my waistline. There may be an option of a leg bag, but we won't know until it's done and I've tried it out in the wheelchair. There probably isn't enough room.

I'm pretty scared about it and upset that it will probably be on my lap - I won't be able to have anything else on my lap I guess (like my handbag) and I am nervous about me or anyone else jolting or accidentally pulling it.

It does look like I'll need new clothes - it's not going to fit into tight leggins and fitted skirts. I'm still floundering on that one, I don't know what would be best. I'm assuming dresses will be out because of the hassle of accessing the bag. I'm hoping that someone else in my situation will have some ideas.
I'm going to a wedding later this year and the outfit I had ready will now not do at all, I am gutted about that. I want to look my best and not draw any attention to a bulge on my lap.
Twinkle7
 
Posts: 4
Joined: Thu Mar 06, 2014 4:39 pm

Re: Clothing advice please

Postby RosyHannah on Mon Mar 17, 2014 9:41 pm

Hey,

Just wanted to stop by and see how you are getting on now?
Did you manage to sort out clothing which made life a bit easier and/or are you adjusting to the changes now?

Sending you positive thoughts,

Rosy
RosyHannah
 

Re: Clothing advice please

Postby Twinkle7 on Thu Apr 03, 2014 6:25 pm

Thank you Rosy, I appreciate it.
The op was pretty traumatic but I'll spare you the details.
I don't think I can say I'm used to it exactly - there are so many different bags, valves, straps...
Different advice from hosp nurse, district nurse, continence products supply company and Gp, they pass me from one to the other, it's a bit of a minefield. As it's up to me to order supplies I put a reminder in my mobile about when to change valves, when to order bags etc, but then I was told I couldn't order two types of bag (calf and thigh) as the NHS would only pay for one type and that I had to use the leg bags for 5 days but a nurse told me not to because I have to take them off at night and not connect them to a night bag. That was contradicted by someone else and I think it's sorted now, but stupid things like taking weekends into account and delivery time.. boy, considering I was a P.A. and Office Manager a few moons ago, I seem to be the most disorganised person I know!
I've forgotten to open/close valves and got one stuck then pulled it so hard it separated and sprayed everywhere. Knowing how tight to make the straps is a puzzle; too tight and it digs in, too lose and the bag slips down my leg as it fills - as I found out today when I saw it sitting on my footrest next to my shoe! Feeding the tube out of the top of my jama bottoms and to the nightbag didn't go well, it pulled too much and the abdo strap wasn't strong enough to cope with me turning over in my sleep.
I'm definitely not used to having a hole in my belly - cleaning it every day and being nervous of pulling it. I didn't realise I'd have to keep it covered and that it would be permanently discharging. I have huge admiration for those who take it in their stride and manage so well. I watched some vids on Youtube and most talk about a new lease of life and freedom and it doesn't seem to bother them much.
As for clothes - so far I've got some very wide leg trousers and a couple of cheap elastic waist skirts and am still in my nightclothes a lot of the time at home while I am still trying options. I'm waiting for a free sample belly bag and bendi bag so I'd like to see what type of clothing would work with those before I get anything else. I have bought some BIG pants to accomodate the dressing and the tube - you could probably go camping in them :-)

I do hope some more members will come on and talk about their experiences. I don't think I can be the only one struggling.
Twinkle7
 
Posts: 4
Joined: Thu Mar 06, 2014 4:39 pm

Re: Clothing advice please

Postby chrisgreece on Sat Nov 22, 2014 9:35 am

Hi! I am having a suprapubic catheter for 8 months now and it's far more convinient than the Folley. I can wear pants and two pieces outfits, I just cannot wear maxi dresses unless I wear the leg bag. You can ask me anything you want. Just registered and I hope I 'll find some answers for my problem as well.
01/02 Cervical cancer diagnosed
13/02/2014 Cone ectomy
10/03 Hysterectomy
07/04 Fistula repair (failed)
18/09 Fistula repair (f again)
Bladder augmentation in 2015
chrisgreece
 
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