Tuesday, 25 February 2014

Ok, so sometimes an anthill can turn into a mountain....

First things first- my CT was good, I'm NED for another three months! ( NED is No Evidence of Disease).
The operation. This is going to be long and a bit painful to read, but nowhere near as painful as it was to go through it. We got to the hospital on time, went to the outpatients and I was admitted, prepped and duly operated on, a short and apparently completely successful procedure. It turned out that I hadn't understood properly, and I did have to be in hospital for surveillance, and I was trundled up to Surgery B ward to a nice room at the end of the ward, obviously considered low risk. The only unpleasant thing at this stage was that the other occupant of the room was a woman with awful flu who looked extremely contagious and was also an absolute hole in the head. She spent half of every night trying to get her grown up children to get out of bed, come to the hospital and bring her fruit juice, or wandering about crying, or ordering Thai food and scoffing it all down noisily. Meanwhile, I started to feel sick, and after a few hours vomited. This can happen after an operation, but I didn't feel right, somehow. Gradually over the next few days my stomach swelled up and on Sunday I finally got a high fever and started to get edema all over my body. It wasn't painful actually, the doctors were surprised that my stomach didn't hurt. I gradually acquired a stomach tube, a catheter and an iv pole shoving loads of fluids into my system. Then I was sent for a CT which showed free fluid in my abdomen although the contrast medium hadn't got down to the anastamosis, so it couldn't show any leak. So, at about 9.15pm on Sunday I was rushed into a second operation.
What they found was a bit confusing; not classic peritonitis but mostly blood and clots, with no obvious place which was bleeding, while the intestines were suffering and bloated. So after spending a while looking for any possible cause, they decided to cut out the anastamosis and do a new one further on. Since my cecum was bloated and looked bad they cut just after it, so that I now have no appendix, a bright point! Then they did a thorough wash out of my stomach and closed up shop. I woke up the next morning with a 20cm incision and two drains, plus the original operation scar,plus aforementioned feeding tube, catheter and iv drip. I looked a bit as though I had been in a car accident!
Over the next few days I got all the complications; a respiratory infection, a nasty wound infection and to top it all, terrible diarrhea. The infections posed a problem for the doctors; I'm allergic to Zinacef, which means I can't have most of the antibiotics usually used to treat these infections. Here I actually had a lucky break, because in the end, after huffing and puffing, the hospital had to authorize Imipenem, a really good strong antibiotic usually held back as last line of defense treatment. After four days of that stuff I was really good to go!
So, I've been home now for nearly a week, and I am starting to feel really ok. The first few days were pretty difficult, I kept exploding every few minutes and was in the loo most of the day, no exaggeration! It was really liquid, and impossible to control. I went through plenty of pairs of pants, even though I am wearing pads, and I really couldn't do anything except poop, which is why I haven't updated the blog! Now everything seems to be slowing down a bit, and getting solider, which is lucky because my anus is really raw, even though I'm using zinc cream, pile cream and whatever else I can find.Aloe vera seems to help quite a bit. I'm following the MD Anderson program which is probably the most organised one, and I'm taking Metamucil as they advise- I asked permission from Professor Shpitz to take it. Metamucil probably helps a bit, and the low residue diet I'm on probably helps a bit more, and time probably helps the most. I can see the improvement; now it seems to be that a few minutes after eating I need to go and if I sit for a while it can be only once. If I get impatient and get off, I'm going to have to go back a few times, but after that series of poops I'll be ok for a few hours. I would like to get back to eating more healthily, but for now I don't dare. Thank goodness Marmite is allowed, at least I can get a few vitamins from that. Maybe next week I'll try a bit of lettuce or something, but for now I'm sticking with potatoes, rice, meat, fish and white bread. I did try some yoghurt this morning and the reception seemed to be ok, so that's good. I also managed a walk of  about half a kilometre! And helped Oren hang the washing up!
And talking of Oren I have to say that he has been spoiling me rotten. He cooks, does the laundry, brings me tea in bed and generally keeps my morale up. He says he is keeping score and that I will have a hard time paying him back- I hope I never have to pay him back in kind but I gladly would!


  1. Doesn't sound very nice, but at least you're on the mend!

    Do you have any idea yet how long you'll be in Israel?

    1. We're revving our engines and waiting to get the green light! I guess it'll be a month or so at least though.

  2. oh my !!!!! what an ordeal.... something I saved from the colon boards:

    Three days ago I had a fellow colorrectal cancer mate message me. She told me about lomotil. Said the urgency and rush toget to the pot would simply go away if I took it. I had some here that I never used with my bag as I liked my Consistency runny so I never used it. I took the Lomotil two days ago and OMG this woman I could kiss her face!!!! She was right those cramping spasm urgency feelings I was having that led me racing to the toilet as if I was running for gold are completely gone. I feel like instantly I have far more control over my bowels and my life then I did pre-lomotil!

    AND ALSO.....

    For the " fire in the hole " feeling I used Proctosone / Proctosedyl type meds from the Onc and my GP.
    They are available as suppositories ....
    OR topical creams .....

    1. Yes, you are right on both counts. I haven't used much lomotil, but I did take a couple on the worst days and it is a wonder drug. I am now getting much better anyway, much less diarrhea and more under control so I don't really need it. For the 'fire in the hole' I'm using a mixture of Procto-Glyvenal, zinc ointment and Hollister Moisture Barrier cream. It gradually settles down after a few minutes.

  3. Ouch. Hope your pooper is less raw by now, and thanks for being so unenglish in telling us all the details!