As the title suggests I am not too good today. Yesterday, Saturday, was not a particularly good day for me, woke up around 2:30 and couldn't sleep after that so got up at 3. Boy does that make a l-o-n-g day of it. Managed to get through the day but in the evening I felt so tired I just about managed to read to my eldest boy and promptly fell asleep after finishing. I should have taken this as a sign that things were not right. Went to have a bath a bit later on as this helps with some of my problems, such as wiping your backside,( even with so called soft toilet paper the number of times I have over the last 6 months), makes you so sore it is like I would imagine using sandpaper would be. The bath helps with this feeling, but I fell asleep in the bath and woke up bloody freezing cold. Went to bed around 21:30 and fell asleep straight away. When I woke this morning I felt like I was coming down with the flu, not surprising as my eldest has been off school with a badly sore and swollen throat, the doc says it isn't tonsillitis but I wonder as the tonsils seem to be twice the size I would expect. Anyway, first trip to the toilet of the day was very urgent and had a lot of bloody mucus, that is to say both mucus with blood in it and 'bloody mucus!'. I have not had this much for a while so I may have to be increasing my prednisilone again, back up to 40mg a day. Just when I was doing so well and had got down to 15mg a day.
Anyway, my feeling on the ileostomy operation have not changed a lot, only thing I am wondering about is perhaps I should have the whole lot out and not bother with a temporary solution. If I can't get off the steroids now, what will happen when I have had the op and am using the bag instead? Something else to ask the surgeon and consultant I suppose.
In case you were wondering, I have not been dreaming about being chased by giant stomas yet, that is something straight out of a Monty Python's Flying Circus! I am sure only they could do it justice!
Sunday 29 April 2007
Friday 27 April 2007
Stoma nurse appointment
Hi all
Went to see the stoma team today, 2 nurses for 400 people on the Island. At first I panicked a bit, seems a VERY small team for so many people with ostomys then thought that perhaps this was a good sign maybe once the op is out the way and things settle down things go so smoothly that they don't need many people to support them!
I was shown a couple of videos, one on how people cope after the op and one on changing the bag etc. I hadn't thought about how liquid the bag contents would be, that came as a surprise I am ashamed to admit. It just goes to show how efficient your large intestine is, or rather should be. I was given a info pack and there is a good section in one book called 'hints and tips', right near the beginning it has a diagram of the intestine and compares it to a washing machine! What comes out of the small intestine is the wet washing before entering the large intestine, or 'spin cycle'!
Another thing that surprised me was how different a stoma looks when it is moving as opposed to a still image. On video it you can see how flexible it is but a jpeg makes it look a lot firmer.
I am going to be put in touch with a couple of people in my age range that have had the op, we are looking at a loop ileostomy according to the nurse from my notes, that is what I was hoping for really so good news there. The surgeon has been off on holiday this week so that is why I have not had contact yet, Lynne, my nurse, will see him on Monday and say that I would like it done sooner rather than later, actually she said 'get it done asap' so that sounds good.
Ruth, my wife, came in to the appointment with me and we both had equal opportunity to ask questions and we both saw the videos, both had a look at the bags available, 1 piece and 2 piece bags.
How do I feel now? Scared and comforted in equal measure; looking forward to getting off the bulk of the medication, as I will still have a colon I will still need some, probably still need the asacol but hopefully can get off the prednisilone.
The question now is how well will i sleep tonight? I am quite tired so perhaps I will get to sleep at a reasonable time but be plagued with nightmares about being chased by surgeons or large stomas! Not a pleasant thought, trust me!
Mark
Went to see the stoma team today, 2 nurses for 400 people on the Island. At first I panicked a bit, seems a VERY small team for so many people with ostomys then thought that perhaps this was a good sign maybe once the op is out the way and things settle down things go so smoothly that they don't need many people to support them!
I was shown a couple of videos, one on how people cope after the op and one on changing the bag etc. I hadn't thought about how liquid the bag contents would be, that came as a surprise I am ashamed to admit. It just goes to show how efficient your large intestine is, or rather should be. I was given a info pack and there is a good section in one book called 'hints and tips', right near the beginning it has a diagram of the intestine and compares it to a washing machine! What comes out of the small intestine is the wet washing before entering the large intestine, or 'spin cycle'!
Another thing that surprised me was how different a stoma looks when it is moving as opposed to a still image. On video it you can see how flexible it is but a jpeg makes it look a lot firmer.
I am going to be put in touch with a couple of people in my age range that have had the op, we are looking at a loop ileostomy according to the nurse from my notes, that is what I was hoping for really so good news there. The surgeon has been off on holiday this week so that is why I have not had contact yet, Lynne, my nurse, will see him on Monday and say that I would like it done sooner rather than later, actually she said 'get it done asap' so that sounds good.
Ruth, my wife, came in to the appointment with me and we both had equal opportunity to ask questions and we both saw the videos, both had a look at the bags available, 1 piece and 2 piece bags.
How do I feel now? Scared and comforted in equal measure; looking forward to getting off the bulk of the medication, as I will still have a colon I will still need some, probably still need the asacol but hopefully can get off the prednisilone.
The question now is how well will i sleep tonight? I am quite tired so perhaps I will get to sleep at a reasonable time but be plagued with nightmares about being chased by surgeons or large stomas! Not a pleasant thought, trust me!
Mark
Thursday 26 April 2007
About me
OK, who am I? Sometimes I wonder myself lately. Quite a lot that defines me I don't have currently. The most important things are still there, my wife and 3 kids have been brilliant while I have not been well; my eldest, Ellie, is 10, the two boys, William and George, 7 and 6 respectively. They have all been shouted at a lot, due to the level of steroids I have been on mostly but also in part due to how low I have felt. There has been no end in sight and that is depressing, but with surgery on the way I am a lot more positive. With every day being like the one before and knowing that the next day will be the same there is only so much you can take before everything everyone says gets taken the wrong way. Completely unfair of me I know, that makes it worse; I know it is wrong to tell the kids off for something that all kids do but it is as if I am inside my body with no control over the person doing the shouting. This is hard on everyone. But they are still there for me, I know I am lucky.
I run my own business, that is to say I am the business so being housebound since last November has trashed everything really. I hope that my customers will come back to me once I am back fit again, I am good at my job so hopefully they will be back, but if not I will have to think long and hard about what I am going to do. Maybe I will have to become employed by someone else, I must admit that if I was tied to a desk working for someone else I could possibly work some days, but as my job entails driving sometimes from one end of the Island and back again with few, if any, toilets on the way, and that is an insurmountable problem at the moment, it is just not possible. So, once the operation is done and I am well again I can get back to work and back to walking with the family and fishing again. Possibly get out on my boat again!
I run my own business, that is to say I am the business so being housebound since last November has trashed everything really. I hope that my customers will come back to me once I am back fit again, I am good at my job so hopefully they will be back, but if not I will have to think long and hard about what I am going to do. Maybe I will have to become employed by someone else, I must admit that if I was tied to a desk working for someone else I could possibly work some days, but as my job entails driving sometimes from one end of the Island and back again with few, if any, toilets on the way, and that is an insurmountable problem at the moment, it is just not possible. So, once the operation is done and I am well again I can get back to work and back to walking with the family and fishing again. Possibly get out on my boat again!
Lots of support out there
I have been wandering round the net looking for help and support so I can get some ideas as to what to expect over the next few months. My brother in law who lives in Adelaide found a crohns & colitis support site in Australia that has been very good, Crohns Disease and Colitis Support Group Australia and from there I found a fantastic ostomy help site, Ostomates.org. A light-hearted site but with a lot of extremely helpful & friendly people who have been through what I am about to go through and so they can explain things from a different perspective to the medical profession. I have got a lot of questions for the nurse when I see her on Friday 27th, just seen the date and that is tomorrow.
One of my questions was about my weight. I have put on a lot of weight due to not doing much and the fact that I have been on steroids for 6 months. One side effect of them is weight gain, basically I can't stop eating. So, eat lots + stay at home = 16kg increase in weight. This is the gain since I was going to the gym last summer, I lost a lot of weight due to the illness in the autumn so I guess I have actually put on around 25kg in all. I need to lose at least 17kg to get back to some kind of healthy weight, not going to get this off before the op though cos I can't get out on my bike or on long walks till after the op, a sort of chicken and the egg dilemma. The question was about how does the stoma react to weight loss.The main problem seems to be that the stoma should not change much but as you get thinner the shape of your stomach changes, pretty obvious really I suppose, so you have to go careful that you don't get leaks.
That is it for now, I will get some more stuff down before my appointment with the nurse I expect, will definitely post the after the appointment.
Mark
One of my questions was about my weight. I have put on a lot of weight due to not doing much and the fact that I have been on steroids for 6 months. One side effect of them is weight gain, basically I can't stop eating. So, eat lots + stay at home = 16kg increase in weight. This is the gain since I was going to the gym last summer, I lost a lot of weight due to the illness in the autumn so I guess I have actually put on around 25kg in all. I need to lose at least 17kg to get back to some kind of healthy weight, not going to get this off before the op though cos I can't get out on my bike or on long walks till after the op, a sort of chicken and the egg dilemma. The question was about how does the stoma react to weight loss.The main problem seems to be that the stoma should not change much but as you get thinner the shape of your stomach changes, pretty obvious really I suppose, so you have to go careful that you don't get leaks.
That is it for now, I will get some more stuff down before my appointment with the nurse I expect, will definitely post the after the appointment.
Mark
Tuesday 24 April 2007
Hi
Hi there.
My name is Mark and I have decided to start this blog as a sort of diary of my life as I get through having an ileostomy. I was diagnosed with indeterminate colitis November 2006 after having stomach problems for a while and despite a lot of drugs including a human / mouse antibody drug called infliximab I have not got better. Colitis affects the lower intestine and is one of 2 conditions covered by the term IBD or inflammatory Bowel Disease, not to be confused with IBS or Irritable Bowel Syndrome. It is called indeterminate because it may be Crohns Disease but it is not possible at this point to give a definitive answer. So, as the songs says, 'The drugs don't work' so I need surgery to sort me out. You do not 'recover' from IBD, the best you can hope for is a remission, for some people this lasts for a few months, for others it lasts for the rest of their lives. I am not one of these people unfortunately!
I am going to have an ileostomy, an operation that will give my large intestine a chance to rest for a few months. In order to do this part of my small intestine is taken through a hole, or stoma, in my stomach and faeces are collected in a bag that is emptied when full or when convenient. This is a bit scary at the moment but I must say that hopefully this will give me some kind of life back as I have been stuck pretty much at home since November, the only major excursions being stays in hospital and 2 trips to Southampton University to my Open University tutorials. (I am studying a computer degree, currently studying a course about object oriented programming using Java. I have another blog going, not updated too often at the moment though, Can I learn to program Java?
I am using my 'dead time' to study but lately I have let things slip a bit, it is hard to study or do much at all when you are constantly running to the toilet and each day is the same as the one before and you know that the next day will be the same again! This is why I am glad that the surgery is going to happen. Just need to wait for my name to come to the top of the surgeons pile.
That will do for now, I will be updating this daily, as I wrote above, the idea is that this is going to be my diary of how life changes over the next few months so check back soon to see how things are going.
Bye for now
Mark
My name is Mark and I have decided to start this blog as a sort of diary of my life as I get through having an ileostomy. I was diagnosed with indeterminate colitis November 2006 after having stomach problems for a while and despite a lot of drugs including a human / mouse antibody drug called infliximab I have not got better. Colitis affects the lower intestine and is one of 2 conditions covered by the term IBD or inflammatory Bowel Disease, not to be confused with IBS or Irritable Bowel Syndrome. It is called indeterminate because it may be Crohns Disease but it is not possible at this point to give a definitive answer. So, as the songs says, 'The drugs don't work' so I need surgery to sort me out. You do not 'recover' from IBD, the best you can hope for is a remission, for some people this lasts for a few months, for others it lasts for the rest of their lives. I am not one of these people unfortunately!
I am going to have an ileostomy, an operation that will give my large intestine a chance to rest for a few months. In order to do this part of my small intestine is taken through a hole, or stoma, in my stomach and faeces are collected in a bag that is emptied when full or when convenient. This is a bit scary at the moment but I must say that hopefully this will give me some kind of life back as I have been stuck pretty much at home since November, the only major excursions being stays in hospital and 2 trips to Southampton University to my Open University tutorials. (I am studying a computer degree, currently studying a course about object oriented programming using Java. I have another blog going, not updated too often at the moment though, Can I learn to program Java?
I am using my 'dead time' to study but lately I have let things slip a bit, it is hard to study or do much at all when you are constantly running to the toilet and each day is the same as the one before and you know that the next day will be the same again! This is why I am glad that the surgery is going to happen. Just need to wait for my name to come to the top of the surgeons pile.
That will do for now, I will be updating this daily, as I wrote above, the idea is that this is going to be my diary of how life changes over the next few months so check back soon to see how things are going.
Bye for now
Mark
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