Forum

Botox, bladders and SPC's

Hi folks,

I hope people are enjoying the unseasonal bank holiday weather

Lots of people seem to have SPC’s of which I’m one. I had mine last August and haven’t looked back sinse. I had botox at the same time which doesn’t seem to be common?. Having the botox means I pretty much can’t go the normal way. I have the occasional sneeze problems but that’s it.

I wonder if it is offered at the same time to everyone or was I the odd one out? My surgeon put in the SPC while I the botox kicked in with the hope I could go back to ISC but I don’t want it to go. I have got used to it and not having to get up twice in the night to go to the loo is so much better.

It wasn’t without it’s drawbacks as a ‘day case’ turned into 2 nights and then a re-admission as I bled a lot. Even so I’d have it again in a heart beat. I see my surgeon in two weeks for a check up but there seems to be not much sign that the botox is wearing off. They recconed it could last anywhere between 6 12 months and nearly 10 months later all is well.

I guess I just wanted to see what others have had and there seems to have been comments about leakage that i’ve not really had.

Enjoy the sun if you have it,

Sara

Hi Sara Hope you have enjoyed the sunshine today too? I had my SPC fitted just last week and the consultant did say that he would do Botox if I leaked uretherally! He wasn’t keen to do it at same time and said we’ll see how things go? How has it been for you? What was the 1st change like? I’m a bit anxious about that in 6weeks time! A lady I spoke to in hospital had a dreadful time at her 1st change…;( Linda x

Hi Linda,

I’m enjoying the warmer weather thanks.

My first change was fine, the subsiquent ones have not! The first was done in hospital and I took painkillers. The recent ones are done by the district nurses and they have a habit of just turning up on the day without any warning so can’t take anything. My stoma is quite small and my next change will be to a smaller catheter so hopefully in future it won’t be so painful.

Have you been twisting the tube, does it move in and out a little? It made me feel a bit queezy the first few times but it helps prevent any adhesions.

I’m so glad I had the botox at the same time, their reasoning was it would have been just one procedure. I had a lot of haemorrhaging after that wasn’t picked up early so ended up with massive clotts in my bladder. The SPC blocked so I ended up with SPC and large urethral to wash it all out. Apparrently redheads are prone to them?! Having said that I don’t want to put you off, it has made a huge difference to me. I feel so much more in control of my trips to to loo.

I hope this helps but ask any questions if you have them,

Sara x

Hi Sara Thanks for your reply. The nurse did say move the pipe around but I still feel very sore at the moment. The wound is scabbing up now and I’m dreading the pipe sticking to it!! I will like you do take painkillers before changes! The clots you got sounded horrendous…what a carry on. What WAS it like to wee normally??? How long did you leave your original dressing on for? Linda x

Ooooh, you 2 are scaring me now.

luv Pollyxx

Hi Linda, I didn’t have any stitches with my spc and so no scabbing. I was able to twist it from day 1. Mine wasn’t especially sore either. The nurses told me to leave it uncovered almost immediately but I was a bit nervous of that. I guess it took me a month to feel ok about it. Are you cleaning the site? What with? The whole post surgery bit was very scary, mostly coz the wanted to send me home and I refused as the spec wasn’t draining properly. If I’d done home like I was I’d have been in a right state! I think we are good at knowing our bodies and need to stick up for ourselves a bit more. As it was they sent me home too early. I don’t think my story is the typical Polly, the outcome was worth all the hassle I went through. I will have the Botox again if I need it coz it’s made such a difference. Sara x

Hi Sara I just wipe the site with cotton wool and plain water. I still haven’t really turned the pipe as it seems to be sticking!!! Yuk!! Glad it took you a while to feel ok about the wound. Keep thinking I must be a right wuss about it!! Linda x

Yes, you 2, i will think more about the benefits I will enjoy for years, after the initial post op time has passed.

Weeing far too often and urgently these past couple of weeks.

luv Pollx

Linda, You’re not a wus at all, lets face it, we have a foreign body sticking out of our body and we girls are ‘supposed’ to face away from the loo and we shouldn’t be able to wee stood up! I’m so lucky to have a boyfriend who isn’t squeamish about these things! Took the whole thing in his stride and has even changed the dressings when needed. Saline might help the healing process, that’s what the nurses used when I was in hospital. I use saline wipes now. Remember… You are always braver than you think yo are. Love. Sara x

Hi Sara Thanks for that…my hubby is very hands on too. He has changed the dressings and has tried to move the pipe… Will have to try and get saline to wipe the wound. They just told me to use water in hospital. Linda x

l found it best not to cover the site - and the baby rash cream Bepanthenom [think that is the spelling] is good to keep the surrounding area healthy. You will get ‘braver’ with it and try gently turning it. For the cath change you will need Cathogell - you get it on prescription. lt numbs the area - lsogell is another. Make sure the district nurse removes all the fluid from the balloon -she should take her time making sure she gets out the same amount that goes in. l have the glycerine fluid put into mine - When she is about to remove it - just take a huge breath in and let it out slowly as she removes it. Quite often it is out before l realise it. Never Never use a latex cath - as the bladder really does not like these and tries to react against it. The silicone ones are best. And a short female cath - the less tubing you have the less likely you are to get a kink or blockage which then makes you pee urethally. You have all heard of D-Mannose tablets. lt really does help keep the bladder healthy. l find all sign of sediment [ which we all get whether we have a spc or not] has cleared up. D- Mannose is the concentration of the good guys in cranberry juice without having to drink gallons of it.

lts like everything we dread but familiarity makes it easier. Do insist on changing every 4/5 weeks. Any longer it can be mmore difficutlt as the cath tip can get a bit crystalised.

l was so glad l had my SPC when in hospital recently. As anyone having hip/knee surgery were catheterised automatically during the op [ urethally] - l coped well - just had to ask for the ‘mens’ cardboard urinals to empty mine into.

All the best girls

Fx

Frances , so pleased you are back on here. How did your op go? How are you managing? Thanks for the advice, I really am very worried about the change! It blocked last night and I wet myself…fortunately I still have intermittent catheters so hubby use one of them to relieve me. Nurse been to do washout and all seems well!! Keep doing your exercises! Linda x

Linda, lf it blocked and you did not pass urine urethally - it could be that the catheter is too far in and actually blocking the uretha. By gently turning and pulling back a bit will help- you will soon get to be a professional. Just standing up straight and walking about can sometimes sort things out.

Yes, back at home - and back on my Tramper.

Fx

I was able to get rid of 300mls by using the intermittent catheter. Can’t walk around but I did stand up the best I could and nothing drained. Bit too squeamish at the mo to twiddle with pipe! Will keep an eye out. Hubby away to pick up my D-Mannose! Happy tramping… Lx

Hi Campion, Thanks for the bepanthen ( how ever it’s spelt!) tip. Sara x