Forum

Incontinence - the bad one

Well after another horrendous episode of having no control and my bowels emptying with no warning (and I was at my 91 year old neighbours &didn’t make it to the loo ) I am being referred for a colostomy!

Whilst it is a bit scary to consider this as I am only 42 I think if it gives me confidence to go out again it can only be a good thing.

My hubby is a bit worried as it is not exactly sexy! But I think you can take the bag off for awhile and just have a “tap” without the bag? Please correct me if I am wrong. I am not worried but wondered if anyone has got one and could share?

Thanky kindly in advance! Julie x

My only experience is family members who I have needed to help manage their bag whilst poorly following other surgery.

Bowel incontinence has a habit of making people housebound to be on the safe side,and that is no way to live.Pads may be an option but only hide the problem until you can get to a loo and even the best fitting pads arent always reliable or discreet.

Having a colostomy has been a major life change for the people I know.It took a while to learn the new way the body is functioning but as with normal bowel motions patterns tend to develop which gives you increased confidence in managing it. Learning to live with the sounds it makes took one person longer.

From a sex appeal point of view I agree they have zero appeal but that can be got round.I know ##### used to cover hers with a boob tube or fancy lacy tops that hubby was happy for her to keep on. And despite bedroom acrobatics from the sound of it (things my hubby can only dream of with my legs) no the bag never burst.

colostomy nurses are very similar to ms nurses and if it is a route you do go down they will hold your hand for as long as you need them

all the best Pip

So sorry to hear this. I was referred to a gasroenereology specialist nurse by my continence nurse - the specialist nurse put me on imodium liquid to firm things up and then peristeen irrigation to empty every other day. She told me about another patient who was going to have a colostomy but avoided one by trying peristeen - have you talked to someone about alternatives before you go for this procedure? Things are still a worry for me but with a lot of planning, I can noe go out whereas at one stage I never thought I would after several really bad accidents. Good luck.

Hi Julie

Colostomy seems a bit extreme. As another poster mentioned-have u explored alternatives and decided this is the best option for you?

Check out Peristeen if you havent already-puts you in control

Ellie x

Ah thanks everyone very kind of you all to reply x I have been refused peristeen as I am not wheelchair bound! I know this PCT is dreadful!! I will plod on and see what happens next with the hospital but it is really life limiting to say the least!

Julie xx

l have been using the peristeen system for a few years - and l am not wheelchair bound - l am appalled that you have been refused - surely they could let you try it before going down the drastic line of a colostomy. l saw the peristeen system advertised in the Pathways mag- l then just telephoned them - and within about 10days - l had a visit from one of their advisers and an incontinence nurse - shown how to do it - and in no time got the hang of it . l can re-order any of the components by phone and they are delivered straightaway. All on prescription. l do take loperamide and codiene phosphate to ‘bung’ myself up as l have rapid transit. [can’t spell diarrehoa] So this shows the peristeen system is OK for those who are constipated as well my problem. My advice to you is just ring Coloplast - explain to them how you have been refused - you will find them very helpful - they will know more about this problem then your GP and MS nurse.

Best of Luck

F.

Ditto all that Champion says!

Ellie x

Hi, I just want to say that I think campion has offered great advice. i have looked into using peristeen, but have been able to cope by using co-danthrusate laxatives, lots ofhigh fibre foods and the odd movicol.

good luck.

luv pollx

Thank you, thank you, thank you!! You are all so wonderful and truly the best friends I could ask for!

Julie x

Have just emailed Coloplast via their inquiry form to ask them to contact me re- Peristeen! How brave am I xx

If PCT will not countenance peristeen, I am told there is a new suppository on teh market which is prescribable called Aralax - I have not tried them (I use peristeen) but am told they do a good clear out job and are similaraly used every two days.

Hi Julie

Peristeen will need to be prescribed for you-someone has to pay!

The prescription is for the equipment as there is no drugs involved. Some badages and dressings need to be prescribed-similar for Peristeen I suspect. So may be worth talking with your GP again-perhaps he/she can contact Coloplast for information. Theres a customer (patient!) info pack and medical staff one. My GP and I def got the packs anyway.

Good luck! Lets us know how you get on (if you are happy to share)

Ellie x

Dear Julie,

I put in ‘the most beautiful girl in the world’ to google and got - http://www.google.co.uk/#hl=en&rlz=1R2DKUK_en-GBGB348&sclient=psy-ab&q=the+most+beautiful+girl+in+the+world&psj=1&oq=the+most+&aq=1&aqi=g10&aql=&gs_sm=1&gs_upl=9547l7353563l0l7361344l9l9l0l1l1l0l563l2391l0.3.2.1.0.2l8l0&bav=on.2,or.r_gc.r_pw.r_cp.r_qf.,cf.osb&fp=24aaf5ff94bdaf71&biw=1024&bih=535

They (like you) are all human (I’m sitting here with a ‘catheter’)

Marcus.

Hi Julie

I think I would be asking for a second opinion and perhaps a full written explanation for the refusal so that I had all the facts.

Cheers

Moira

I Know a young teenager who is an about solute inspartion at 13 she had a colostomy. She leads life to the fully including attending ballet class & achieving a very high standard. She had different bags which are suitable for different occasions including flat ones for under her leotard and water proof one so she could go swimming, she was able to wear crop tops and hipster jeans.

At seventeen she has been able to have it reversed, as they think her bowel problems have calmed down.

I know this is something that nobody wants to have, with somewhat of a stigma attached to it, but it will not stop you doing anything that you wish to do.

Twist

Dear Julie, I wish I knew how this chat room works as I can’t even manage going on facebook without help from my 16yr old son!!! I’m going through just the same problem as you and I’ve just phoned Coloplast to order Peristeen dvd etc.!! I’m sure you’ll get everything sorted out and I’ll let you know how I get on too. Katie ps I’m 54 so really old but at the moment I feel anything’s better than this not feeling safe thing.

PPs know I shouldn’t have put dear Julie as not a letter and probably should’ve stayed anonymous!!

I want say a very big THANK Y0U to everyone who sent me advice and kind thoughts about incontinence thing!! I don’t even know if I’m writing this in right place for everyone to see or whether I’m replying to just one person by mistake. I spent two days crying after I had two “accidents” and thought I’d NEVER be able to leave the house again except undercover of darkness or with large paper bag over my head etc. I still have not been out alone yet but at least I know there are some options available that might help. Thank you all so very much. Ps I didn’t even know I had any replies on here til my husband showed me where to look yesterday. Sad or what?!!Katie

So I have had a bit of a brush off from Coloplast who referred me back to my GP I have subsequently seen my MS nurse and spoken to the continence nurse today. She is supporting the use of Peristeen just have to get the GP to agree to the cost which I should hope will be OK. Much cheaper than the colostomy so hope I will be able to get it!!

Thank you all for your support, means a lot! Julie xxxxx

Sounds like good news Julie!

Ellie x

I have been using Peresteen for several years. I used to use it when I could stand, but now I am in a wheelchair and I cannot manage it myself. My carer does it for me while I am in a hoist. It is not so easy, but we manage. Supplies can be ordered direct and are delivered next day. Coloplast are very good.