Mucus leak and total colectomy

Hi I had a total colectomy and "barbie butt" in 2019.because of a history of colitis followed by bowel cancer.If you read my bio you can see how I have got on since.then if you have any questions I am more than happy to share my positive experiance.

Kath

Nothing stops the mucous. It is a natural part of the bowel function. I wear pads to go out of the house and clean the area frequently to prevent infections. I also use a diaper rash cream. I haven't had the skin problems you describe. 

If you have a loop ileostomy, was it intended to be temporary? Since you still have colon, I would think so. You probably already know this but Barbie butt surgery means they can't reverse the ileostomy. 

When I had my surgery, there was a possibility that I would end up with a Barbie butt. I didn't but I was told that if I did, the wound could give all kinds of problems healing. This will not be easy. 

Hello Nicky009,

I had a loop ileostomy on my right side prior to colorectal surgery (which works so well I decided to keep it) and a colostomy added to my left side to act as a terminal to the severed colon. After the op I soon started to discharge mucus from my rectal stump. It was explained to me that it is not just your nose that creates mucus, it's also your eyes, small and large intestines, etc. and we are all the same. It is essentially a natural lubricant for certain functioning parts of the body. The colostomy produces a small quantity of mucus that is easily contained by a stoma cap, changed every 48 hours. The rectal stump felt as if I needed to use the lavatory, but in reality there was hardly anything there at all. The operation was 3 years ago and the rectum stopped producing mucus about 18 months ago, after getting slower and slower. The absorbent cap continues to collect and I guess it always will but both stomas are easy to manage once a routine was established, incorporating an adhesive enhancer and elastic strips.

I do hope that, as time passes so will your concerns. I believe that some of our concerns are caused by fear of embarrassment and humiliation in public and a loss of self confidence. If you had a runny nose no-one would give you a second glance. I have been in that place too but now the only time I have a concern is when flying abroad for more than a couple of hours. In which case I pre-plan by reducing food and drink in the run-up period. What goes in has to come out!!

Best

Dulac

I have a Barbie bum. I still have mucus and blood discharge after eight months. My surgeon isn't concerned,  he says I'm doing as really well considering my histology. 

I had papillon & 6x5 chemoradiotherapy before having the ileostomy and protectomy so it is taking me longer to heal. 

I don't have any regrets having had the latter treatment, ALTHOUGH sometimes I cry about my bottom as it does feel odd, no matter what anyone says, it feels strange and affects you mentally but I'd have it done again 100% . It is painful when you first have it done, not trying to scare you but it is. I found it very difficult for the first 6 weeks as you cannot sit comfortably also it gets easier by degrees. I went to a concert a week before Christmas and managed to sit for 2 hours with short interval.

I had the district nurses dress my wounds for months when I came out of hospital but I'm sure you would heal quicker than me.

7 months on I  use Always Platinum pads as I find they don't chafe and keep me clean. I also use Weleda calendula nappy cream which feels lovely as my sewn up bit feels dry and taut at times, and I have Westlab seasalt baths.

Wishing you well whatever you decide x

Hi Dulac,

Thank you for getting back to me, really helpful to hear your story as I have a feeling they might offer a solution like yours with a colostomy to collect the mucus . I have been doing some further reading about living with a rectal stump and it appears like some people suffer from continued inflammation in the stump with rectal bleeding which they manage by taking Mesalamine enema. Is this something you were told about? Has the consultant/surgeon discussed with you future plans to remove the stump? Do you have any other issues impacting your life because of the stump? E.g. not being able to sit for long periods of time

It is proving to be quite difficult to make general conclusions as it appears like everyone's experience is different with some people continuing to produce some mucus/blood and that is concerning as it doesn't quite solve the issue I face.

Hello MyNorfolkLife,

Thank you for your honesty and getting back to me, really appreciate it. Is the bleeding/mucus meant to be short term and only a result of the wound healing or did they tell you this will be something you have to manage for life? I am a little confused by your message as I am trying to understand what the source of the discharge is given everything is sewed up so I hope its the wound and you recover from that. It seems like the recovery time can be quite long is another theme I see.

I have been trying to read further online about the topic and some people appear to experience quite bad itching in then bottom area post surgery. Is this something you experience? Is there anything else that you experience on a daily basis which makes life challenging? I have to admit, I sit down for a fair amount of the day as a result of other medical issues so having this restricted in some way is concerning.

Thanks again!

Hi Katz51,

Thank you for getting back to me and sharing your story on your bio. Yes, it would be helpful to hear further from you especially about managing life with a barbie butt 6 years after surgery. Did you experience any issues around wound healing or discharge/blood? Any issues with sitting for long periods/itchiness in the area? How long did it take you to recover fully and how are you getting on now?

Thank you for your help!

Hi Nicky009 

I had a different surgery (total pelvic exenteration) so have had my rectum removed and have a permanent end colostomy with rectal stump. I just wanted to say that with this I have never had any rectal leakage-either discharge or blood. After I had recovered, I’ve had no issues with sitting at all-only those early weeks post surgery were tough, but I’ve also had my vagina removed and also have a vaginal stump, so my surgery was particularly big. 

Sarah xx

Hi.Nicky009

My butt took about 5 weeks to heal.the district nurse came about 4 times to dress it then left it to me to continue.

Initially it did feel as though I had a permanent"wedgie"but that feeling disapeared .I must admit it isnt the prettiest to look at but at my age Im not too bothered.

Because it is stitched up I have never had a problem with blood or mucus as there is nothing to produce it.

In the early weeks if sitting for a while I did use an inflatable cushion provided by the redcross and made sure to keep changing my position(never ever use a donut as it pulls the wound apart preventing healing)

Hope this helps

Kath

Ps.because I had colitis for 30 ish years prior to the cancer I find tne ileostomy so much easier than the dashing to the loo at short notice.very freeing and really no bother

I think my blood and mucus I have is because I have had chemoradiotherapy ( unsuccessful treatment as it made me incontinent)as well which made my pelvic area harder to heal ,my internal skin tears easily. You won't have that problem and will hopefully heal much faster than me.