Retracted ileostomy stump causing discomfort and skin issues - seeking advice

Hi fellow ostomates,

I have had two surgeries in the last two years. The first was for the removal of my colon, and the second was for a proctectomy (removal of the rectal stump). I had no problems with my ileostomy stump for a year, but when I had my second surgery, it was found that I had two hernias. My small bowel had adhesions, some ulcers, and a small portion was resected. When I woke up from surgery, I found that my ileostomy stump had retracted inside. Now, I find it difficult to stop the pancaking under the bag, and the skin around the area is very sore. I have tried a special powder and hydrocortisone cream. Has anyone else had this problem with the stump retracting in? (I am having surgery to bring it back out. Does this work?) Also, any ideas on how to prevent the skin from being so raw around the stump? I would appreciate any help. My last dilemma is that since the surgery, my small bowel has been highly active, and I am constantly emptying my bag. I am on Imodium, but this worries me because I don't want the stool to become too thick and cause a blockage. Any suggestions?

Hello stomafart.  First of all let me congratulate you on a truly inspiring pseudonym.

I don't have any of your physical problems but I did use immodium for many years and found that I needed to take it in liquid form so that I could adjust the dosages very precisely. In order to achieve accuracy I used a syringe to measure the amounts being used on a daily basis. This way I was able to monitor output and adjust the dose to suit.

I hope this is helpful.

Best wishes

Bill

Hi Stomafart,

Yes, they do, don't they? Sometimes it can be very awkward. When it happens, I just smile and walk away. None of your problems are new to me, and all will come out right in the end. Do you use Coloplast bags? If so, you will find little white stick-on tabs which are designed to cover the filter while showering. If you use them continuously, they stop pancaking. I have never found Imodium to work. If you think about it, if you have a very fast and liquid output, as I do, there is no time for Imodium to work. And more often than not, it just ends up in the bag. I'm on my 3rd stoma now, and it is quite long so that it cannot retract completely. And I don't get as sore as I used to because less fluid gets to the skin when your stoma no longer retracts completely. Coloplast makes a skin barrier wipe or spray, and although it says not to be used on broken skin, it immediately soothes the burning and helps it heal more quickly. Where in East Sussex are you? I'm in Chichester, West Sussex.
Best wishes for your new stoma,
Marilyn

Hi Pussycat,

My proper name is Jenny and I want to change this as I had a lot of wind on first having the op, it should have been Napoleon Stomafart but I hate it now (I call my bag 'Sainsbury' now instead as it is a bag for life. Anyway, thank you so much for your advice. Why did you have to have a 3rd stoma?
I won't bother taking the Imodium as it didn't work before. Also, I am on tablets as the bowel is highly active and the salts etc. are replaced by these tablets which makes sense.
I do use Coloplast bags and wondered why I had the little white stick-on tabs, and I will give them a try. My biggest problem is that I work as a Surgical Care Practitioner, and when I am in theatre with my surgeons, I have to stand at a twisted angle when we do laparoscopic gallbladder surgery. By the time we have finished and I am ready to sew up the patient, I know that I have pancaked under the bag, and this happens every blinking time.
Thank you for your advice, and I will give it a whirl. By the way, I come from Hastings, so not so far.

Hello Jenny

I am having the same trouble as you with sore skin around the ileostomy stoma. The ostomy nurse suggested barrier cream. It's called Cavillon or something like that. It's very expensive but available on prescription from the NHS. In Surrey anyway, which should be no different in Sussex.

I am also having trouble with what's left of my sigmoid colon and am very worried about having to have a proctectomy - it's giving me nightmares. Do you have any tips?

The background to my trouble is an ileo-rectal anastomosis for Crohn's Disease in 1982, which caused no trouble until I had an accident involving a fractured skull, ruptured anastomosis, peritonitis, multiple organ failure, septicaemia, etc. in 2009. I awoke from the operation to find they had given me an ileostomy. My worst nightmare had come true. Things were going really well until a few months ago, but now it feels like Crohn's Disease has returned - an even worse nightmare!

My real name is not Cecille, by the way.

Living with Your Ostomy | Hollister

Hi Cecille,
Just found your message. You are entitled to have the cavalon sticks or spray on the NHS. I get mine from the company that I get my bags from. My stoma nurse has been great and we use the company called Homestyle Positive and they are brilliant. All my bags are cut to size, and I get the following all free of charge - air freshener, wet and dry wipes, black bags, cavalon sticks and spray, adhesive remover spray, aloe vera powder, mattress protector, etc. You are entitled to this and should talk to your stoma nurse.

The proctectomy was not too bad for me. Everyone heals differently and I had to be opened as I had adhesions, 2 hernias, and a bit more of the small bowel taken away. My surgeon was not willing to do laparoscopic work as I had so many problems from the first op. I decided to have the ileostomy as I had enough of being ill, running to the toilet (in my job it was difficult), and all that goes with UC. I was told I had Crohn's for many years but as there is a thin dividing line between UC and Crohn's, it was decided I would have an ileostomy. 10 years ago I would have said no way, but I work with the surgeon who performed my op and I had full trust in him.

Please don't worry about having the proctectomy. It was OK, I was always in control with painkillers once the stitches were out. I have no problems from the bum end and it did not take long to heal considering it is an unnatural thing for the bum to be sewn up, so sitting pulls a little, but you would be off work for about 2-3 months or maybe sooner.

I hope this has helped and I call my bag 'Sainsbury' now as it is a bag for life and there is no lining up for the loo anymore or begging to go first and getting stressed.

Regards
Jenny

Hiya
Only just seen your June message and it's now October 16th! Many thanks for the interesting info. I am just waiting things out at the moment and am feeling very indecisive!
Warmest wishes
Cecille (not my real name)