I'm getting slowly but surely back to a semblance of normal, as far as digestion is concerned, anyway. I now know for certain, after a lot of trial and error (mostly error, ouch!) that at the moment I cannot eat any vegetables at all, no garlic, no ginger and no chili, pepper or paprika. As long as I avoid those, life is reasonably good, and if I don't forget to take one imodium in the morning and another before lunch, and also take Metamucil with every meal, things are even better. I can go out for hours and not worry too much, and on Sunday we went for the buffet lunch at the Yacht Club here in Puerto Princesa and stayed for four hours after a large meal talking to other cruisers- I was fine! I can eat some fruit, like papaya, which is really good here, and bananas, so I can get enough vitamins not to get rickets!
On Monday I went to do my three monthly CEA test. I don't know how to react to the result, really. It was 2.14, which is an increase from the last test. Since finishing chemo I have had three tests, the first was 0.88, the second 1.36 and now 2.14. It looks as though the CEA is slowly creeping up, and if that is true it is bad news. But there are a few things which mean that I can't be sure of that; firstly, this is a different laboratory, maybe using a different test kit- there are several, and each give slightly different results, enough to produce results like mine. Secondly, anything which causes inflammation can cause CEA to rise, and it is certainly true that I have had an inflamed bum for a while.
This level of CEA is still not enough to be sure about, basically, so all I can do is either to wait three months and test again or wait a month and test again. I'm in two minds about what to do, and I guess I'll make my mind up on the spur of the moment. In three months I have to do a liver ultrasound too, although I could move it up. I don't know, I'm just confused what to think. I know if I talk to my oncologist he won't be concerned about this result. I just have to try to forget about it and get on with life, I guess. This is so typical of this disease, there is so much uncertainty all the time. Maybe that is the hardest thing.
Wednesday 7 May 2014
Thursday 24 April 2014
Ten Weeks (and a bit...)
This is the first time I can use the word 'good' to describe how I feel since the reversal operation. The last few weeks have been better and better, partly because I have started to use more Imodium. With the long trip to Chasamba, I took plenty of Imodium and had a good experience. I really didn't have any problems at all, even though it was 36 hours of travel, three planes and lots of airport time. As a result I have carried on taking it since then, playing around a bit with timing and amount to see what works. So, I've got to the point where 2 tablets first thing in the morning and another one some time in the afternoon seem to have the desired effect, which means that I feel safe to go out, usually have only two or three lavatory visits per day and no out of control rushes at all. I am still taking Metamucil, although I keep forgetting and I'm not really convinced that it makes that much difference. One thing which has helped a lot is that I have started having porridge for breakfast; my stomach really seems to like it and the silence afterwards is remarkable, no bubbling, volcanic eruptions or even squeaks! And, I had SALAD today! Only three spoons, just in case, but everything is ok so far. I was amazed at the crunch of fresh vegetables, I had completely forgotten how salad feels. Papaya is another food which is fine, I had half a medium sized one yesterday, and bananas of course too are ok, so I'm getting enough vitamins. I won't take vitamin supplements since there is some data which suggests that antioxidants help cancer cells survive. I'm still drinking lots of green tea too.
I can share with you now the fact that until a short time ago I really thought I had made a mistake having the reversal. I had perfect control with the ileostomy, and then suddenly, I'm shitting all over the place, stuck on the loo all the time, having a sore sore bum and afraid that that's how my life is going to be from now on... It doesn't help that doctors are vague about what to expect, and reading other people's experiences can be very scary too. Some people still have no quality of life years after reversal. I didn't want to post my fears because I did hope that I was wrong and that things would get better, and thank goodness, they have.
I can share with you now the fact that until a short time ago I really thought I had made a mistake having the reversal. I had perfect control with the ileostomy, and then suddenly, I'm shitting all over the place, stuck on the loo all the time, having a sore sore bum and afraid that that's how my life is going to be from now on... It doesn't help that doctors are vague about what to expect, and reading other people's experiences can be very scary too. Some people still have no quality of life years after reversal. I didn't want to post my fears because I did hope that I was wrong and that things would get better, and thank goodness, they have.
Sunday 30 March 2014
Seven Weeks On...
Just coming to write this update has done me good. Until I read what I wrote nearly a month ago I had forgotten how far I have come, and how much things have changed. I have had a lot of ups and downs in the last few weeks, the worst stage being a few days of really bad rectal pain, so bad that I was taking pain killers and Valium just to be able to sleep, and really felt rough. I suspect that may have been a flare up of radiation proctitis caused partly by having home made tomato soup- too acidic for my poor old bum, at least just yet.
My bowel is gradually starting to settle down, and I have also discovered a really good trick which seems definitely to help. I've only started this today, but it really has made a difference to me, so I'll pass it on; As you get better organized, there gets to be a certain time of day when your bowels decide it is OPEN time. For me this is after lunch, but everyone is different, and for some people it is after every meal. The problem for me was that I would start going to the loo after lunch and be in and out maybe 10 times or more until everything calmed down for another day, usually after 4-5 hours. This is draining, bad for your ass and very restricting, you can't go anywhere during this time, even trying to cook or do basically anything is difficult. I was taking Imodium with little effect. SO....the big secret is this- take one Imodium half an hour to an hour before the meal which gives you grief. It doesn't mean you won't go at all, (I was worried about this, weirdly!) but it does slow things down and make it all come together. Eureka! I have only been three times to the loo today! No-one who hasn't been in this situation can understand how much this means; I was getting so depressed and angry, I didn't know what to do with myself. One little tablet and everything is better.
I am back on the Metamucil by the way, I gradually built up from a teaspoon once a day up to three spoons and the gas is better. I am still not eating much fresh vegetables or fruit, except bananas, but I did have some cabbage salad and a few beans on Saturday, both considered potential trouble makers, with no bad effects. I would try to introduce more veggies, but it isn't really a good time now, because tomorrow we go on a big trip. Yes, back to dear old Chasamba, waiting for us in Puerto Princesa. It's a 36 hour journey, which means that my Imodium discovery is just in time. We leave here tomorrow afternoon and travel to Jordan by road, get on a plane to Bangkok, then Hong Kong, then Manila, then Puerto Princesa. Four flights, but thank goodness not much waiting in airports, which I hate the most, and the long flight is a night flight, so we can sleep. I hope. I have chosen seats near the loo, just in case.
I am so happy to be going home at last, even though this is my home too, and Oren's relatives have been very good to us. But Chasamba needs us, her keel plates need changing and her engine needs to be fixed, she needs to sail again, and so do we!
I will have regular check ups in whatever country we are in; my next one is CEA in May. So far my levels are; 0.8, 1.37. May will be the third since finishing treatment, and I'm obviously hoping for a low one, fingers crossed.
My bowel is gradually starting to settle down, and I have also discovered a really good trick which seems definitely to help. I've only started this today, but it really has made a difference to me, so I'll pass it on; As you get better organized, there gets to be a certain time of day when your bowels decide it is OPEN time. For me this is after lunch, but everyone is different, and for some people it is after every meal. The problem for me was that I would start going to the loo after lunch and be in and out maybe 10 times or more until everything calmed down for another day, usually after 4-5 hours. This is draining, bad for your ass and very restricting, you can't go anywhere during this time, even trying to cook or do basically anything is difficult. I was taking Imodium with little effect. SO....the big secret is this- take one Imodium half an hour to an hour before the meal which gives you grief. It doesn't mean you won't go at all, (I was worried about this, weirdly!) but it does slow things down and make it all come together. Eureka! I have only been three times to the loo today! No-one who hasn't been in this situation can understand how much this means; I was getting so depressed and angry, I didn't know what to do with myself. One little tablet and everything is better.
I am back on the Metamucil by the way, I gradually built up from a teaspoon once a day up to three spoons and the gas is better. I am still not eating much fresh vegetables or fruit, except bananas, but I did have some cabbage salad and a few beans on Saturday, both considered potential trouble makers, with no bad effects. I would try to introduce more veggies, but it isn't really a good time now, because tomorrow we go on a big trip. Yes, back to dear old Chasamba, waiting for us in Puerto Princesa. It's a 36 hour journey, which means that my Imodium discovery is just in time. We leave here tomorrow afternoon and travel to Jordan by road, get on a plane to Bangkok, then Hong Kong, then Manila, then Puerto Princesa. Four flights, but thank goodness not much waiting in airports, which I hate the most, and the long flight is a night flight, so we can sleep. I hope. I have chosen seats near the loo, just in case.
I am so happy to be going home at last, even though this is my home too, and Oren's relatives have been very good to us. But Chasamba needs us, her keel plates need changing and her engine needs to be fixed, she needs to sail again, and so do we!
I will have regular check ups in whatever country we are in; my next one is CEA in May. So far my levels are; 0.8, 1.37. May will be the third since finishing treatment, and I'm obviously hoping for a low one, fingers crossed.
Sunday 2 March 2014
The three week mark...
Three weeks post reversal, and things are still up and down. I had a few really good days with very few bowel movements and actual TURDS, something I haven't experienced for more than a year. But unfortunately it didn't last; I don't know what I ate or whether it had nothing to do with food, but I went back to what I can only describe as sludge. Sludge tends to be hard to control and also enjoys announcing itself just at unfortunate moments....
Then I think I made a mistake- Metamucil is supposed to help reduce diarrhea and form stools, so if you have sludge it makes sense to up the dosage, sound reasonable? NO. This is a bad idea. Remember this post, anyone who is on the same course as me, you will save a lot of toilet time. When you increase the amount of soluble fiber you are taking, you may find (as I did) that you suddenly get a lot of gas. And I mean A LOT of gas. Enough gas to fill a zeppelin. I'm just assuming, I didn't actually fill a zeppelin or anything, but believe me, I was scared to light a match indoors. And this is combined with aforementioned sludge. I think you get the idea. 'Wet fart' doesn't even scratch the surface, and this is happening six to ten times AN HOUR!!!!
I think on one hand the gas is a good sign; it means my intestinal flora have well and truly recovered from the beating they have had over the last year. It may not be a coincidence that I had some probiotic yogurt this morning too, maybe my bacteria are having a celebration. On the other hand, it's awful, and I'm back to the sore bum stage again. I have found out that water is the best antidote to the burning- washing really well after each mini-hiroshima helps a lot. Now my stomach seems to be calming down, and I think I'll try a day or so without Metamucil to see what happens.
On the positive side, I feel generally quite a lot better, no more fevers and the scar looks pretty good. So, it's like two steps forward one step back. That's ok, it could be one step forward two back, I'm not complaining.
Then I think I made a mistake- Metamucil is supposed to help reduce diarrhea and form stools, so if you have sludge it makes sense to up the dosage, sound reasonable? NO. This is a bad idea. Remember this post, anyone who is on the same course as me, you will save a lot of toilet time. When you increase the amount of soluble fiber you are taking, you may find (as I did) that you suddenly get a lot of gas. And I mean A LOT of gas. Enough gas to fill a zeppelin. I'm just assuming, I didn't actually fill a zeppelin or anything, but believe me, I was scared to light a match indoors. And this is combined with aforementioned sludge. I think you get the idea. 'Wet fart' doesn't even scratch the surface, and this is happening six to ten times AN HOUR!!!!
I think on one hand the gas is a good sign; it means my intestinal flora have well and truly recovered from the beating they have had over the last year. It may not be a coincidence that I had some probiotic yogurt this morning too, maybe my bacteria are having a celebration. On the other hand, it's awful, and I'm back to the sore bum stage again. I have found out that water is the best antidote to the burning- washing really well after each mini-hiroshima helps a lot. Now my stomach seems to be calming down, and I think I'll try a day or so without Metamucil to see what happens.
On the positive side, I feel generally quite a lot better, no more fevers and the scar looks pretty good. So, it's like two steps forward one step back. That's ok, it could be one step forward two back, I'm not complaining.
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!
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!
Tuesday 4 February 2014
Countdown to being stomaless....
So.... I was supposed to be stomaless by now, the operation being planned for Monday. But on Thursday I got a phone call from the hospital to say that they want to change the plan- instead of being in hospital for a day before the operation and a few more after, they want to do it as an out-patient procedure, and change the day to Thursday. I was actually really glad; the worst part of the whole thing is the hospital stay, and I will feel much better at home. It isn't far to the hospital, so if I have any urgent problem I can be there quite quickly.
I keep looking at my stoma in the shower and wondering what it will be like to be without it. I'm so used to it, I actually feel as though something is going to be taken away from me. How will I manage without it? This is a real concern, since I have only a small amount of rectum left. Things might get really wild for a while, I'm envisioning mad dashes to the loo, awful accidents in train stations, hours spent wondering whether I will be able to leave the rest room.... I hope it won't be as bad as that, but who knows?
The CT I did nearly two weeks ago is still not ready, I wish I had asked for it urgently. I'm fed up of waiting and although I try not to think about it I find myself checking my email ten times a day to see if it is in yet.
So this is a 'before' post. Next time I update I hope I will be after both these little ant hills that are looming like mountains!
I keep looking at my stoma in the shower and wondering what it will be like to be without it. I'm so used to it, I actually feel as though something is going to be taken away from me. How will I manage without it? This is a real concern, since I have only a small amount of rectum left. Things might get really wild for a while, I'm envisioning mad dashes to the loo, awful accidents in train stations, hours spent wondering whether I will be able to leave the rest room.... I hope it won't be as bad as that, but who knows?
The CT I did nearly two weeks ago is still not ready, I wish I had asked for it urgently. I'm fed up of waiting and although I try not to think about it I find myself checking my email ten times a day to see if it is in yet.
So this is a 'before' post. Next time I update I hope I will be after both these little ant hills that are looming like mountains!
Thursday 16 January 2014
Back to Reality....
After seven wonderful weeks spent in Palawan, Philippines, we are back in Israel for the operation to close my stoma. I had a really good time on Chasamba, and I know she needed our care urgently too; Oren and I worked hard almost all the seven weeks, chipping and sanding, fibreglassing and painting, repairing sails and trying to fix the engine. It was just what the doctor ordered, a complete break from cancer treatment, tests and visits to the oncologist; I wish we didn't have to come back to reality with such a bump. After a grueling journey of 36 hours by plane, plane, 7 hours in Abu Dhabi, plane, bus, bus and finally bus, we arrived home to a lovely surprise of a bed ready to hop into, hot water for a shower and a welcome from Oren's brothers and mother. We are both still jet lagged and have colds, but gradually are finding our land legs.
Today I went to get referrals for blood tests, a CT scan, chest x-ray and ecg, on Sunday I have blood tests done, on Thursday the CT, on the 26th pre op and on the 2nd of February I go to get my stoma closed. I am so used to it, it will be weird not having it. And probably inconvenient, to be honest. Oh well, here we go again!
Today I went to get referrals for blood tests, a CT scan, chest x-ray and ecg, on Sunday I have blood tests done, on Thursday the CT, on the 26th pre op and on the 2nd of February I go to get my stoma closed. I am so used to it, it will be weird not having it. And probably inconvenient, to be honest. Oh well, here we go again!
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