Well I have been thinking of what I want to happen. I have got my appointment date for the sigmoidoscopy, 5th September. I think that if they see more damage I want to go for a pouch. I am not too enamoured with having the whole lot out and be stuck with a bag for the rest of my life, I am only 40 and I want to be here for at least another 50 years so more time with bag than without is not for me. If you are reading this and you have had an ostomy since you were a hell of a lot younger than me I am sorry if I come across as a whining git, I think I have had these symptoms for many years, always ill as a kid so I do actually consider myself lucky that I have gone 40 years without needing this op.
So my steroids are coming down, I think the gastro wants to see how things are after a while of being back off them to see how things look. He was annoyed that I was back on them when I saw him I think but there you go, life is like that sometimes eh?
On a different note, still away on a hol at our friends house just outside Nottingham, saw a very good friend who lives on a canal boat somewhere near Kettering, met him at Rutland water for a coffee. Back home on Monday, see how bad things get after that I suppose.
Bye for now.
Showing posts with label support. Show all posts
Showing posts with label support. Show all posts
Saturday, 25 August 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
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
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