Ileostomy Problems

 I am a 70 year old active male, happily walking 5 or 6 miles everyday, with some of the health problems that come with age. Unfortunately, I was diagnosed with bowel cancer 2 months ago and have had resection surgery 6 weeks ago. I now have an Ileostomy stoma.  This is causing all sorts of physical problems with pain of varying levels. Having accepted the problems of emptying and changing the appliance but have an ever increasing `Lump` that is around the stoma. Not sure if the is a rupture and concerned about this and the size (approx. 140 mm) and as it is larger than the adhesive area that fixes to me. This is causing pain as well, as the Stoma Bag hanging away from my body.  Pulling my stomach muscles as well as showing through my clothes. I`m not sure if this is caused by the type of Stoma Bag I have or requires some sort of support, in the way of a belt? The stoma is high up and well above my waist line so not so discreet. Anyone help on this that has experienced similar problems.

  • Hi there ... 

    Just seen you have no answers to your thread .. so wanted to say welcome to our little chat room..  

    I don't know who's had a stoma bag but sure someone here must have that and could help ... I'm a breast cancer lass ... so sorry, can't answer your question .. but hopefully someone will come along soon ..

    Failing that, you could ring the nurses on here ... number on home page .. or mcmillan they have a free phone too ... they are qualified nurses .. and they helped me early on ...

    Hope that helped a little ...  Chrissie x

  • Hi Virgil,

    6 weeks is still early days in regard to recovery from bowel surgery. 

    I too developed large lumps arond my 2 stomas, though they were not painful. One of them acouple of months ago though, did suddenly develop a hernia. As I was awaiting a planned op to remove some more bowel and redo my stoma for the fourth time (due to a stricture), I had the hernia done at the same time. That was just over 3 weeks ago, so I'm still in recovery too.

    The way to tell if it's a hernia is to observe the area while coughing. The increased inter-abdominal pressure will make a hernia protrude out a bit more. Obviously this should be a gentle cough. If you get any protrusion, this can gently be pushed back inside if it doesn't self-retract.

    That at least the case with mine and the way a doc confirmed the hernia.

    The lump around my other stoma, a mucous fistula seems to be just underlying fat being pulled away by the bag.

    Because you're experiencing some pain around the area, I'd advise telling your stoma nurse or your GP but remember, it could be post-op pain, bruising and such. I'm still experiencing pain/discomfort from my op, though it's not constant.

    I'm also in the process of trying to re-establish some sort of 'normal' bowel function, though it's been messed up for so many years, I've no idea what normal should be, for me.

    I do kinow that despite the practical problems I've had, mentally, I've always been completely at ease with having the bags. So much so that I'd be completely at ease changing it in a roomful of people, were I asked to demonstrate.

    Talking of support, there's some crackin' support vests that I got on prescription, much better than the corset type belt that I was originally prescribed. Again, your stoma nurse is the one who has to organise these for you. Worth getting as ostomates (that's what were called apparently) are 100% at risk for hernias.

    Taff

  • Hello Taff. Thank you for the response and explanation. Coughing at the moment is unfortunately agony, but I have tried a gentle cough. No change on coughing to size of lump, which is definitely still getting larger by the week? Now the Stoma bag after the operation when i had no lump no longer fitted and leaked. Now been changed in size and type 4 times. The one i have now is just managing to stay leak free `Fingers crossed` but will not last 24 hours and has to be changed daily, with some very near misses. Almost at my wits end and wish I had not had the operation, knowing full well the outcome of that. Thanks Virgil
  • Hi Virgil,

    Mine's a colostomy but I still change the bag daily sometimes twice. Can even be three times on occasion.

    The stomas can conitue to change size and shape and the opening can get smaller. Mine nearly closed over twice and each time it was redone, even when as aminor op, it knocked me back for at least six weeks.

    Changes can occur as things heal, with scarring and adhesions, which can be the source of pain.

    Since I had my last big op on the 6th Nov, the lump/raised area on that side is much diminished. That's the side I had a hernia repair too.

    The other side, with the mucous fistula has a largish lump but it appears to be all flesh/fat and loosely attached to the underlying muscles.

    A site that you may find useful is https://www.uoaa.org/forum/viewforum.php?f=2 

    It's American but well used and very helpful.

    One thing with bags staying on and leaking less is ensuring your skin is properly cleaned and dry. I usually clean the area with hot water and cotton wool pads or the complmentary wipes you get from your supplier. I then clean the area with  Brava skin cleanser wipe, from Coloplast, that seems to work well for my skin, which is particularly delicate. Cleaning is particularly important if you use the removal spray, as any residue will obviously lead to less stickiness. Also, using removal spray can help preserve the skin. Healthy skin is also a must, so change bags earlier rather than later. Some people seem to be having a competition to see how long they can keep the bags on. Don't see the point myself.

    I dry the area by putting a dry wipe over the area and rubbing my hand over it. Then gently wafting the area/dabbing with a fresh one while blowing gently. Only when the whole area is smooth to the touch, meaning it's dry, do I put a new bag on.

    Barrier sprays work for some people, though not for me as they cause a skin reaction.

    Please keep in touch and let us know how things go.

     

    Taff

  • Hi Taff, thanks for that information.I have spoken to the local hospital who try to be helpful. Due to a shortage of Stoma Nurses at the moment, it is extremely difficult speakiing to anyone. I am currently both in serious pain and sufferering from a number of bouts of Diahorea? I am unable to find out if this is normal, but having difficulty getting an answer. I now ever regret having this operation, knowing fully what the long term outcome would be. Just appear to be going around in circles. I speak to the hospital and they tell me to see my GP. I speak to my GP and they see have a word with the hospital? Despair at situation.

     

  • Hi Virgil,

    I'm at a bit of a loss as to what to suggest. It seems somewhat absurd to send somebody home from an op without a contact to call, in case of any problems.

    Is there a way you can contact your surgical team and see what they suggest?

    Alternatively, present yourself at A&E and tell them you're in agony?

     

    Regards

    Taff