Hi Vicki, your a lovely person and I'm about to get a SPC, and I appreciate your knowledge, take care,,,and thank you for your time.

Please do storage videos xx

Thanks for this video. I’m going to get a spc in about a week. And have it for the rest of my life. (That’s what my urologist told me I needed) And I thought my life would be completely different from now on. I mean I already have a urethral catheter and it hurts like hell. So my only question is: does an spc hurt as much? (I don’t mean when you insert it, but after you get used to it) Thanks again ❤

Hii can i know your phone / message number ..we are in the sama condition

Do you have chronic infections?

Thanks for this and really appreciate the positivity

Hi I had a SPC fitted this March size 18ch have you ever suffered with the valves flip flow falling out. I had my catheter down sized to a 16ch after advice but the prossy valves fall out and know the leg bag connections are starting to fall out. I was just wondering what you can advise. Thanks for your advice about twisting my spc catheter I twist my catheter every day and especially when I have a shower. Thanks ever so much for sharing your videos I really appreciate your help. 👍

What kind of clothes can you wear with a suprapubic catheter? I’m getting one on the 14th

This video is not helpful at all 😒

Oh my God I got a super feed of catheter years ago. It was horrible. The pain was so bad after they did it . I also had a complication where your body creates like crystals in the track and they would stick to the catheter and when they would pull it out, it would rip it away. It was excruciatingly painful. I had a problem, and I went to the hospital for a test, and they radiologist exploded the balloon in my abdomen, and I was crying and in a fetal position and it absolute at me and they sent me home and I got to my driveway and the catheter fell out because they exploded it, I called the doctor and they’re like 45 minutes To get to this hospital that was across town because the track will close. For whatever reason the never heard of this would not take me seriously by the time I got there they were waiting outside. They wrote me into the ER. They told me it’s too late to go to the operating room, I had like people jump on top of me they pushed it through by abdomen with some type of instrument that was extremely painful. They literally read it with me away, kind of and I can remember the nurse saying just wait a second. Let me go get her before you do it and they didn’t.. I also was at work and I had trouble with the leg bags. They kept falling down and it was embarrassing as hell I did up for the plugs though if anybody is doing this, I suggest you do the plugs with a clamp and I eventually did learn how to sell and I am so glad I did, compact Klass compact catheters they look like I just shove them in my pocket. They’re perfect. They’re not too soft. Not too hard. They have special lubricant on them already. Definitely definitely try. Them

So young yet so wise. Thank you for your kindness, sympathy and understanding for all us who are going through a very worrisome journey. You have allayed so many our fears, and helped give us courage to face the trials and tribulations of upcoming events. I am 78, and like many gentlemen of my vintage, I will soon have a TURP operation, to restore free flow. At present I have an indwelling catheter, and after only a couple of weeks, my kidney function is bouncing back. This augurs well for the operation. Post op I will have a SPC for some time, and this video has bucked me up immensely. THANK YOU.

i was born with spina bifida, can't do that walking thing, i have to have my second op for a urethral stricture in August, ive been using intermittent catheters for nearly 30 years now, it wasnt great at first but now its just one of those things i just do, having indwelling or SPC's has been mentioned but im not a fan of the idea, im good with the way i do mine, put it in, do my business, take it out, and throw it away, single use, not much chance of infection etc. so at least for now i'm sticking with it.

I have had my spc and was told nothing it’s been so scary I’m always sick and got told I’m a square peg in a round hole which was very upsetting. I’m also in a wheelchair so I find it doesn’t drain cos I’m always on my tummy. I’m 60 years old live in Australia and have no one to talk to about my situation

What led to your stoma bag. I had a fusion T12 and l1. Since then intermittent Catheters, as well as poor bowel control. I think I am not managing the bowel well as I keep my self slightly constipated as to not deal with the constant smearing. 😢

The ladies dig my SPC! 😜😂

I've had my catheter for 25 years and what they don't tell you is that accidents can still happen! Rare but it still happens

I get mine this coming Tuesday and I’m terrified and scared bc I’m going in a twilight

Hi this was very helpful. Im asking for a mate of mine whos having a suprapubic catheter placed due to having a urethral stricture. Hes a bodybuilder and wants to know whether he could continue lifting heavy weights because he was told he may have the catheter for quite a long time and because hes trained for a long time he is able to lift quite heavy and light weights dont affect his muscle growth.

Thankyou for this video!! I have to make the decision in 4 to have this procedure done. I am so scared. Your video has given me hope!

I thank you for being so brave. I am a cardiac nurse currently not working or functioning in life due to intestinal failure. I will be getting an ileostomy in a month. I'm learning from amazing people like you. I did not have many patients with stomas so you have no idea how helpful this is. PLUS I appreciate your real talk 😊

They don’t tell you anything

Aww babe, im sat here watching you break your heart, and mines breaking for you, 😢😢💔 i wish there was something i could do for you. I know how much you want a baby from all the videos and you would make an amazing mum. And that child would be lucky to have you.

Hi hunni, I've just found your videos and omg girl, your a true warrior with everything your going through, and you are helping me with my catheter situation so much, as the NHS and urology people I see, they have not helped me with anything just fitted it and left me to figure it all out on my own. 😢 so I just want to say a massive thank you to you. Xxxx

I’m 80 yrs old and about to commit to a Supra pubic catheter after living with an in dwelling one for four months. Glad I watched your video

Brilliant video. That’s what i want to see ……reality. This makes me less nervous for my stoma. Thank you. ❤

Thank you. ❤ for posting this. I’m having my Illeostomy in 4 weeks time so I for one appreciate videos like this! 💕

I share your pain n the retention and the urgency. It’s taken me 6 years to get where I am now, which is with a urethra catheter in until I can have the SPC. I tried all the medications and finally had urodynamics they said I had great pelvic floor control, it was almost too good, I have a bladder, cervix and rectal prolapse which doesn’t help like you I have a very narrow urethra not helped by the prolapse. I had a full bladder at 100mls and had to pee at 40/50 mls. They offered me Botox which they said had a great success rate with and maybe 1 in 1000 would find they had retention but they would teach me to self Catherise. Unfortunately because my spine is collapsing and the prolapse I couldn’t self Cath so my husband was taught to do it, the nurse teaching him tried three times and then decided I need a smaller one so I had a ten which is paediatric, he got it it in first time😝⭐️ and for the last 12 months has been doing it for me. Unfortunately I was the 1 in a 1000 wouldn’t you know, and it made the retention worse but I still had the urgency. Like you I’d sit on the loo bent over double literally pushing a wee out like having a bowel movement….not great for the prolapse, I’d eventually after about half an hour or more literally have a dribble, get back into bed and 10 minutes later be back on the loo having to go again. I was getting 2/3 hours sleep a night if I was lucky, it put my blood pressure up, I’d feel really sick and depressed and the sleep deprivation really messes with your head. So I really had to rely on my husband to catheter me but he’s working, I’m not and I didn’t feel it fair to be waking him up a hundred ( not literally!) times a night so I struggled on. It’s been fine him doing this whilst he’s working from home but he’s under pressure now to go back to the office at least once or twice a week and I explained this to my Urologist. I had never heard of an SPC and at first it sounded a drastic move but also the answer to everything. When I had the hysterectomy in December I had a catheter during the surgery and initially they said they keep them in for about 6 hours after the surgery but because I’d had a perforated bowel (which wasn’t their fault I had masses of adhesions on the bowel and bladder and it took 4 hours to sort them out on top of doing the full hysterectomy!), I needed up five days in Critical Care and we decided rather than having to keep getting a nurse to Catheter me every time just to leave it in. As I said previously I should have been listed for the SPC in the next couple of weeks but because I ended up having a laparotomy opened up from navel to bikini line I’ve got to wait for a few months for everything to heal. When they took the staples out 10 days post op the wound opened up in a few places the worst being in the suprapubic area🤦‍♀️ so that is going to make things a bit longer too. It never rains if it can pour!

Hi I’m waiting for an SPC and I was listed for my pre op yesterday but unfortunately I had a hysterectomy which turned into a laparotomy with perforated bowel and lots of adhesions which needed removing just a week before Christmas. So unfortunately I’ve had to postpone the SPC but having struggled for the last 6 weeks to wee, I’ve had a urethral catheter inserted this Monday just gone from the District Nurse as I’m still having wound dressing changes every week following the surgery. I’m getting really bad bladder spasms which are horrendous but I’m determined to try and stick it out, thankfully I have oramorph which does help mostly. I have a couple of questions please which I’m a bit confused by, I’ve asked the nurse and got one answer and looked online and get various different answers! No surprise there I suppose! First question at night I’ve been told I attach the night bag to the leg bag and I keep the leg bag attached to my leg all night. Is that what you or others do? Secondly when I have a shower they told me to use the night bag 😮, does that mean I take the leg bag off and attach the night bag to the catheter port, or do I just attach the night bag to the leg bag like you do at night which means the leg bag fabric backing gets wet?!! When I asked the nurse she just said you only take the leg bag off to change it. So I’m really confused on that one. Lastly what do you and others do with your leg bag? At the moment I’ve just used the fabric Velcro strap just at the top of the bag on my thigh, but I’m voluptuous! To put it nicely 😉 and it either keeps slipping down and then tugs on the catheter which I think might have been part of the bladder spasms or I have to have it done up quite tight which can be uncomfortable especially at night. I’ve seen on Amazon fabric leg “bags” which hold the bag inside and also ones with waist straps and shoulder straps. Do you or anyone have any experience or advice on what works well? Thank you for your time, it’s really helpful hearing from someone like yourself who has had experience of both things , Nurses and Doctors can only tell us so much and without experience it’s hard for them to know or understand. I have multiple complex health issues and I often think it would do Drs and nurses good to actually “try out” having various treatments done to them so they understand what it’s like, having a urethra catheter in if only for 48 hours would give them much insight into just what it feels like.!

Blessings in an abundance of the faith. I salute you. 😘🙏Grace and peace be unto you and to this place. Thank you. God bless you. 😊Will you believe and receive Jesus Christ as your LORD and personal saviour??? I do. 😊

Hey I have a question are you available?

I am dying to try this open tip catheter but I do not want to spend that much money on a bunch of them when I only want to try one and if it helps and I believe it will, I’ll go ahead and spend the money to buy enough for six months

Thank you so much for this video, I didn't even know it was a thing till a few days ago, I see a few lads in my ward with them and it seems to be a hassle healing process. I broke my back 8 weeks ago. Love from Scotland

Thanks for being very frank and thanks for all of your advice. I really appreciate it. I've had a really bad year in 23 till present.

Thanks for this helpful video. I change my SPC with no pain relief other than the local anaesthetic in the lubricant. I'm thinking of asking if I can try entinox and am ewondering if you had to argue a case for this? Do you have the Entinox at home?

God bless you always my dear stay safe stay healthy always be happy ❤

Due to her lack of volume and heavy accent and endless rambling I didn't get much !

You are such a Sweetheart, you tell it like it is. Yes We All "':;. It does take a lot, but the Information is So Important. Also we who have Ostomies have them for so many different medical reasons and I have learned to follow my own path. A suggestion is when trying to open a bag, wet your fingers then open the bag.

What a great informative and down to earth vid…. Im a Man ,,, I’ve had a Catheter stuck up my Co*k for 8 months with no end in site as to what’s happening. I can’t sexually relieve myself and intercourse is not poss… It’s painful to walk, sit or get up… I was never told about a Supra, but it seems like I could have some kind of sex life again…hopefully find a Partner too as the loneliness of being alone is Excruciatingly lonely and extremely frustrating… BRILLIANT INFO thanx

Thank.u

Wow. What a journey. You are so brave. I'm a 52 y o male who has just had a SPC fitted after complications due to a urethral stricture during my radical prostatectomy. Weirdly, I am starting to think this a piece of luck as my SPC seems less uncomfortable than a urethral one would have been. Anyway I was given much info about the SPC so your videos have been helpful. Thank you.

Yeah yeah yeah stupid biiiiiitch - my fav sentence in this video🤣 Me vs all my pumps and priming tpn shit🤣

WOAH HANG ON YOURE UNDER THE SAME IFU AS ME AS THE PREGNANT CONSULTANT IS THE EXACT TIME MY CONSULTANT WAS PREGNANT; is it dr first name S surname D?! Everyone hates her but legit I absolutely adore her and I totally understand why everyone hates her as they’re used to Richard (my Aussie bae) or Dr G who I have a love hate relationship with, the first ward round after he’s been on clinic duty he’s absolutely horrible to me and makes me sob my eyes out (we have the exact same conditions and im autistic too, my 1st admission with them was the last 7 months of a 15 month admission at Brookfield (in Chelmsford don’t touch it with a fucking barge pole they’re 75% of the reason I have ptsd, Addenbrookes IFU is a very love hate place, so many EDS’ers love them but hate st marks and Addenbrookes is closer to me so similar to you in Kent I have arrangements there that I stay on any ward except M4 their IFU as I’ve self discharged 3 times from there septic because im so traumatised and I will not go into their vascular access unit as it’s where my most significant trauma happened, they have 3 consultants, Dr W, Dr M & Dr S, W&M hate each other so always have different opinions (you can imagine that when you’re Tpn Dependant🙄, but tbh I’d take both of them in the same ward round over having to even go down a corridor and pass Dr S, a lot of people love her but every time I see her she does more and more damage) tbh like with Dr ‘shitty Suzanne’ but truly she really is 50/50 and when you had this bad time she was pregnant with Chloe, she’s currently pregnant again and won’t be back until absolute minimum January which I’m honestly devastated over as im so poorly atm bcos I can’t get st marks to listen to me whatsoever because I keep getting ward rounds with “consultants” that don’t know me admit I’m too far out their level of power and even the similes bits need review from either Dr G or the aussie bae so each time they say ‘we’re putting you on their high priority list so I promise it won’t be a waste of time as it’ll be them you speak to… that was this time last year when I saw ‘shitty suzanne’ although for me and my parents we love her and she is honestly brilliant if you have an autism passport so: if you Google Addenbrookes hospital autism passport (PDF) you’ll get a print out few pages of A4 paper and that alone filling that out has totally turned a 180 on my care like they every time im admitted it’s stuck in the front page of my patient folder in both the doctors folder and also in the nurses folder Then make sure you get them to put a sticker on the front that says ‘anyone who has contact with Emmie must read autism passport before interacting with her’ and each time you meet someone new say to them just to make sure you have read my autism passport haven’t you because we haven’t met so it’s really important (i also keep one to hand to physically give it to them in front of you I’m so sorry you’ve had really horrible experiences recently, I’ve binge watched a fair few of your SPC videos as I had mine done on the 18th and sadly having aEDS vs hEDS which people just assume I have because of the wheelchair, PEG, JEJ, Hickman, TPN dependant (well in theory idk wtf has happened to st marks since this time last year but I’ve literally been at an emergency MH assessment today because im not coping and I’m so far past my breaking point it’s unreal, im just thankful that my mum is a nurse (last 3 years alone she’s done a palliative care ward and now Colchester General Hospital A&E nursing where she’s at atm so if you ever find yourself stuck there’s a LOT of people in their hospital now that know about Ehlers Danlos because I was a nightmare for 6 months and they had no choice but to learn and the few that didn’t landed the teenager that’s a few months younger than me and her family coming over to me as my pump was alarming and both of us were/are autistic and they thought I was just so tired from being so poorly that I’d slept through it but nope apparently the red button was hit and the dreaded red trolley with all the entire ward staff were working on my crash call and I woke up fully 7 days later in intensive care (id started showing signs of stirring on day 3 but they kept me sedated for another day until I was fighting through it so they eased it off slightly and I woke up to my mum and my dad either side of my bed holding my hands and I was told they’d been taking shifts so one of them was there 24/7 despite me obviously having 1:1 nursing and there’s now a hospital policy that under no circumstances can i legally return to Langham ward😅 no loss they were horse shit anyway, my first day ever with an NJ tube a bank nurse ignored what i was saying AND BOLUSED 700MLS DOWN IT IN LESS THAN AN HOUR, I found out after leaving ICU that although that’s not what but me there they had to use so much narcan as langham had been overdosing me with oxycodone for 3 months and I never knew, I’d only ever had my fentanyl patch and oramorph before but langham were TWICE DAILY CRUSHING SLOW RELEASE HIGH DOSE OXY TO PUT IT THROUGH MY NJ, ALSO GIVING MY LIQUID OXY THROUGH MY NJ AND HAD A HIGH DOSE OXY PCA yet that wasn’t actually what put me in ICU, that was my mental health’s work but the board of directiors and the CQC blamed langham ward for as well as 3 drs, one was sacked entirely and his license pulled, the other two had to do extensive training on restricted/monitored licenses so they couldn’t do anything without another dr being with them watching and getting approval for super basic stuff meanwhile I went to an endocrine ward which Eastthorpe are the G.O.A.T of Colchester general wards but A&E are insanely good with EDS & co-morbidities so fully recommend there (just avoid langham🤣) pretty sure I’ve seen you at st marks before though! My it is @emmiexrose and @utterlyemmie but at one point I had a few different CI related accs but after 10 years I’ve lost count😅🤣 sending you so much love, drop me a DM and I’ll send you my number as I’d love to chat properly!!! So much love doll🤍✨🤎

Are you able to lay on your stomach comfortably with your SPC?

How often does it need to be changed

Hi just curious about your spc because i was thinking of itt as an option bec i sometimes have bladder problems but i am scared of the bladder spasms and infections i have to ho through if i will have spc...tnx a lot

Is it painful?

Thank you for the video, my Urologist suggeted a suprapubic catheter, after Interstim and botox combinded, along with a pessary did not work. I am now even more convinced that I do not want to have one. My bladder was fried by radiation which added to my grief.

That looks painful

Thank you for doing these videos! I have MS and two years ago had to get an SPC. I have gone through a lot of the growing pains on my own, but I have found a few of your videos recently that have helped me adjust even more.

Ngilu 🥺