Son is recovering but there are lots of ups and downs, especially with regard to the functioning of the stoma. It is obviously a case of getting used to it and realising that it is still early days and the intestines have suffered a great deal of trauma during the surgery, so they will not be working as easily, or reliably, whilst still swollen as they hopefully will in a few weeks. There was excellent news this morning though, the consultant phoned with the biopsy results and the inflammatory process was definitely ulcerative colitis, not crohns. That is excellent as it means that once son has recovered from this surgery and, fingers crossed, the ‘take down’ surgery he will be almost back to how he was 2 years ago and before his ulcerative colitis started.
Son’s moods are hugely variable, rarely relaxed, often quite short-tempered and frequently anticipating some complication. Every twinge is a possible sepsis, stoma not functioning for an hour, it’s obstructing, he is constantly undertaking a search for symptoms which may be indicating a complication developing. I suppose that he has experienced such a short, but intense relationship with ulcerative colitis, with suggestions that this drug may work, that diet will reduce the symptoms, but all ultimately failing dramatically, that he cannot believe that the operation will be a success. He has lost even more weight since the surgery, he refuses to weigh himself or have photos taken. He caught sight of himself in a mirror the other day, and was horrified by how emaciated he looks and so says that he doesn’t want any reminders of how terrible he looks. I think that it may be quite positive, especially if he gets down about his ileostomy, as he will be able to look back on the photographic evidence of how ill he was, and accept that his stoma has, quite literally, saved his life.
The stoma nurse visited today, and that was great, as she answered questions and reassured son, DIL and clucking Mother. She was also able to discuss the practicalities of ordering supplies, prescription charges and diet. Diet, what diet? Being a greedy little being I am oh so slightly jealous, no one has ever told me to eat high carb, low fibre food. A professional has never said to me ‘ I want you to eat jam doughnuts, chocolate, full-fat milk shakes and chips’, there again I have never been so thin that I find it painful to sit on a padded dining-chair.
Still no new grandchild. Stretch and sweep booked for Sunday
“jam doughnuts, chocolate, full-fat milk shakes and chips”. I can feel the weight piling on just thinking about it. I hope son soon starts to feel a bit better and stops worrying about what might go wrong.
My goodness. That’s quite a roller coaster you’ve all been riding. Surely he’s bound to better now that he’s in a familiar and comfortable environment. I’m glad it’s not Crohn’s- I’ve heard it can be quite difficult to cope with. I hope he settles into his new life soonest.
Hugs~ Amanda
tell your son, even if he didn’t eat a lot of the suggested menu – I took care of it here today – on his behalf. Seriously – glad the nurse’s visit answered some questions – guess you can only take it a day at a time now. But still thinking of you all…….
Still sending best wishes to your Son for a speedy and permanent recovery. Having been hoping that the baby would hang on a little bit I’m now really hoping that it decides to turn up before the stretch and sweep. Is there anything in the world more horrid than that?
Madsadgirl – Having all these naughty foodstuffs around is a terrible temptation, especially the marshmallows.
Bookwormom – We were so so delighted to discover that it wasn’t Crohns. It would have been so sad, lose your colon and still have a nasty, destructive disease.
mumof4 – Ah, but there is the flipside, no nuts, baked potatos, sweet corn etc.
Lucy – Stretch and sweep, horrid? Surely not! I just tell my women that it is uncomfortable. Okay, so I paint a rosy picture but it is better than an induction, all those needles, now those are horrid.
I can live without nuts! Stretch and sweep is not so bad either….much preferred it myself over being induced with drugs/needles etc.
Good luck with it all. I am excited for you and hoping it all goes well. You guys need some really good news your way.