Limbo - husband has an ileostomy and has been getting constant partial bowel obstructions for the past month. No seems to be doing anything. Really worried

My husband (42) was diagnosed with bowel cancer originally in 2018, so this has been a long journey. He has an ileostomy and has been getting almost constant partial bowel obstructions, for the last month. Hes been in hospital twice for 4-5 days but CT scans are inconclusive- probably due to scar tissue. 

No one seems to be monitoring his other than me. Hes just sent home for a few days then ends up back in again. He has no life and is basically living on the sofa in agony. I have two small children who dont even recognise their dad. Has anyone else experienced this? I am very worried that I will find him dead, either from a heart attack because his potassium keeps tanking, perforated bowel or suicide. No one seems to have any answers. Ll

  • hello kaye24,

    l can feel the pain and the worry from here. Following a stoma reversal l have had 6 episodes of the bowel blocking over the past 8 years and the pain is excrutiating. Yes taken into hospital, morphine and monitored until the bowel finally releases.

    Scar tissue from the rejoin, adhesions from the interference are pointed too as the reasons for the problem. Its a catch 22 situation if further surgery was undertaken since it could lead to more scar tissue and adhesions leaving you even worse off. 

    l have been told very clearly more than once, that no surgeon short of a life threatening scenario would be brave or silly enough to open me up again due to the complications doing so would present, That's not really what you would like to hear, but it is the reality

    The thing is that you have to get your head around the fact that the initial procedure was a life saving intervention that came at a cost. Given a second chance of life but with no assurance's of how that future could play out

    l hear your concerns regarding perforated bowel and is something that l aware of every time l head to hospital, l hear you when you when you say no one seems to have any answers, that may well be because there are not any for the lower percentage of us that are unfortunate enough to suffer from post op ongoing complications.

    In a perfect world there would be an answer, but,

    All l can offer is that placing stress upon yourselves is one sure way of triggering more episodes, easy to say, harder to do, so.understanding, accepting and coming to terms with your situation is the way l have found is my best chance of reducing these episodes whilst acknowledging the the chance of a further one, recognising the signs early and dealing with it at that time as early as possible, by taking Buscopan to try to relieve the cramping build up.

    Sorry if this seems like taking a wet flannel to try to put out a raging inferno, but its where you are at when dealing with a bowel that does not like any physical interventions and reacts poorly in the aftermath.. l could do the comforting soothing approach that would ultimately lead nowhere, but the one and only thing you can contribute that could make a difference where medical intervention is not possible is once again, stress reduction. 

    l hope your husbands situation improves and this current flare subsides, l well understand the worrying times this places upon your family,

    David

  • Welcome to Cancer Chat Kaye24, although I'm very sorry to hear about the near constant pain your husband has been in for the past month, and for the worry and stress this is causing.

    I can't begin to imagine how scary this must be for you and your family, especially with your two young children to look after as well, but we are here for you Kaye and sending you all our strength and support at this very challenging time.

    Caring for someone with cancer, as you already know, is very tough so it's very important to take care of yourself at this time. I know that's easier said than done but if you feel comfortable doing so, lean on your family and friends for comfort and support as I'm sure they wouldn't want you to be going through this alone.

    This current situation must be extremely difficult for you and your husband so if either of you ever need to talk to someone about any of this, the Samaritans are available on 116 123, 24 hours a day, 7 days a week. They are there to listen and will do all they can to support you both if things become a bit too much.

    If you have any further questions or concerns about your husband's situation, our cancer nurses are also available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

    I really do hope a solution can be found and your husband's pain starts to become more manageable over time.

    Kind regards,

    Steph, Cancer Chat Moderator