Hey Everyone,

How are you doing?

It’s been a long time since my last post. Too long in fact. Time has been against me as well as my mental state! Oh, and my physical state as well! It seems some days are great and others are just downright awful!! Anyway….the topic for this post is about retractions and prolapses of the stoma, both of which are unpleasant experiences.

Information in this post is sourced from the book “Fecal & Urinary Diversions Management Principles” as well as my own personal experiences.

Up until mid July, I had only experienced retractions,and then for whatever reason, my ileostomy prolapsed. It prolapsed about 20cm (7.8 inches), and excruciating pain accompanied the prolapse. The term prolapse means the telescoping of the bowel through the stoma. There is no definitive length to a prolapse, which can vary in length between 12.5 to 33cm (5 to 13 inches), based on those figures, mine was mid-range. I can assure you though it felt like my WHOLE innards were tumbling out

In the days leading up to the prolapse, I’d been experiencing a niggling pain at the “top” of my stoma, that  is to say that looking down on my stoma, if it were a clock it would be 5o’clock. On the day, this pain was getting noticeably worse. Each time I bent over, or forward, when I straightened up, this pain was really catching. By days end, it was really quite severe. Id eaten a little bit of tea, and was in the loo, when I started experiencing super severe upper abdominal cramps. I noticed that my pouch had filled with liquid. Uh oh…please not an obstruction! Please not an anything!!!!!

When I emptied the pouch, as I undid it, and the liquid poured out, so too did my ileostomy!! I nearly died! I removed the pouch and couldn’t believe what I was seeing. (I got photos of it to send to the surgeon, but I don’t think it appropriate that they be displayed here!) There was my ileostomy…all 20cm of it! By this time, the cramping still hadn’t abated, and I was sweating and clammy. I was trying to think rationally…not easy when you’re in shock!

Not only did the length shock me, but the diameter as well. It was extremely enlarged. I had a go at reducing it. This means that I attempted to gently push it back inside. I guess because of my state, I wasn’t able to do so. It was difficult to reduce though and the pain was still intense. I called for an ambulance as it is my only means of transport into the hospital, and I knew I needed some serious pain relief!!

At the hospital, I saw the Dr on call. She had a look at the stoma, attempted to reduce it but also ran into difficulty.In addition, this was the first time she had seen a prolapsed stoma, so no doubt she was a little bit nervous!  A decision was made to call in the “head honcho”. He came in to see me,prior to coming in, he  had phoned through to the surgical team at the larger hospital informing them of my presence and diagnosis. He wanted to let them know of me in case he couldn’t reduce it and I would have to travel the 100km to have it surgically repaired. He managed to reduce it after about 1/2 hour of gently putting pressure on it and distributing the oedema that had occurred. It was also starting to become a dusky colour instead of the nice healthy red that is often associated with a stoma.

I was kept in hospital overnight, NBM to rest the bowel, and ease the cramping. Also the Dr wanted to make sure that it wouldn’t prolapse again. If it did, I was going to be sent to the larger hospital. I’m sure I hardly moved all night, just in case I prolapsed again!!

Since that first prolapse, I have had eight more since…The next couple weren’t as long, and were quite easy to reduce. Each subsequent prolapse however got longer and longer, until, it was about the same length as the first one. The most recent prolapse, which I’m happy to say was been about 6 weeks ago, was as long as the first one. The unusual thing with that one was it was quite hard to reduce. After I reduced it though, it prolapsed within 10 minutes of me standing up. The second attempt at reduction was again, not without it’s difficulties. This time, I laid down for about 20 mins, unfortunately within 10 minutes of getting up, it prolapsed AGAIN!! This was the third prolapse within 1/2 hour!!! This time I stayed in bed for the rest of the day. I was too scared to get up, and besides, I had a lot of pain.

Since the last episode where I had prolapse after prolapse, I have experienced the same pre-cursors but without the prolapses! I’m hoping that this is a good thing but I can’t really be sure…I guess time will tell.

Now to the opposite end of the spectrum…retractions…

A retraction is when the stoma disappears to at or below skin level. I too experience retractions, in fact, I experience retractions way more frequently than I do prolapses! My ileostomy, when it retracts, retracts from the “top” (closest to my navel) in. My retractions are also accompanied by a “ripping” sensation, and they tend to fully retract so that all I’m left with is a hole on my stomach!

Retractions tend to occur more frequently with ileostomies, that is not to say that they don’t occur with a colostomy. I wonder if they occur with a urostomy, and other stomas? The main problem associated with retractions is the inability to maintain a seal on the pouching system. This is because the output undermines the flange seal, in turn breaking down the adherent. Output then sits on the peristomal skin which if not addressed as soon as possible, will lead to a breakdown of skin integrity.

For me personally, I am always unsure as to what size to cut my hole on the flange. If I cut the hole to fit the stoma, my output will run under the flange seal as soon as I lie down or my output becomes to thick!! Of course, I’m alerted to this by that “crawling” sensation on my skin. On the other side of the coin, if I cut the hole to large to fit the semi-prolapse I experience – well-YUP – you guessed it…output leaks onto the skin and burns it. It’s a catch 22 for me and I’ve  tried lot’s of different methods, pouching systems, glues, rings, seals and so on to try and stem the retractions and maintain skin integrity. In fact, I think I’ve become a stomal therapy nurses’ nightmare!!

At present I’m wearing a convex pouching system.The purpose of the convexity is to put minimal pressure on the stoma so that it will spout nicely into the pouch. I’ve trialled several different brands – and the most effective/comfortable one for me right now is the Coloplast 2 piece convexity Sensura style. Several months ago, I was wearing the one piece Convatec convex brand. For whatever reason, it seems that my needs change and I have to make sure that I try not let my skin get badly excoriated. If this means having to change my appliance brands well so be it. The companies are continually working at modifying appliances, so I find it a good idea to phone them every few months and chat with them about upcoming appliances. They are more than willing to send samples for you to try.

The causes of retractions will vary from person to person.It does seem to result from tension on the stoma. The following factors can contribute to tension: A short mesentery; Thickened abdominal wall; Excess scar tissue/adhesion formation; Obesity; Inadequate initial stomal length; Improper skin excision; necrotic stoma; and mucocutaneous separation.

My stoma retracts at any time – day or night – regardless of ANYTHING! As soon as I lie down on my bed, it retracts and it is just a matter of time before I experience leaks. To date, I haven’t read of any other ostomates who have had this trouble as regularly as I am experiencing, but my ileostomy has a mind of its own. It retracts (and now prolapses) as it feels. I always make sure that I have PLENTY of appliances with me when I leave the house.

One day, I hope that research will be undertaken to find a sure fire way to prevent retractions and prolapses. I’m more than willing to be a guinea pig for any trial.

No matter how many times I experience leaks because of my retractions, they still affect me mentally as well as physically. I feel helpless and hopeless, dirty (after all, I have just sorta crapped myself). Sometimes I find that  I tend to fall into a bit of a depression as I just have such an uncertainty when I leave the house. Although I lay claim to having tried “everything” – if anyone out there reads this this and has suggestions, PLEASE let me know know what they are. I AM WILLING TO TRY ANYTHING!

Whilst this has been a personal journey entry, I’ve tried to incorporate a little bit of education in here as well. Hope you’ve enjoyed and learnt something from my journey….we are not alone in this…

Have a great day,