I saw my surgeon yesterday for my 6 week check, and am officially signed off! He doesn't need to see me ever again. So as long as I don't have any complications with the stoma, develop a hernia or diversion colitis (which is a slight possibility and would require another surgery - sigh) I don't need any further appointments, tests or treatment! So that's it.. I have a 'bag for life' and will live with my stoma forever. But that's fine by me.. most of the time now I barely even notice it's there. I do of course always have the support of my stoma nurse Lesley who is an angel and always there at the end of the phone or email.
Saying goodbye to my surgeon did make me reflect over the last 16 months though and thought I'd make a list of all the things that I've gone through:
4 surgeries - emergency surgery to treat peritonitis, sigmoid colectomy/stoma formation, stoma reversal, laparascopy/stoma formation
5 CT scans (with contrast)
1 MRI Scan (with contrast)
1 Colonoscopy
3 Gastrograffin enemas
1 small bowel follow through
2 transit tests with Xray
14 consultations with 3 different consultants (inc a world leading professor)
1 incorrect diagnosis of SIBO
8 courses of antibiotics
4 IV courses of antibiotics
22 days in hospital
I guess that puts things in perspective... Sometimes I get awful flashbacks to the times in hospital, especially the first admission when I was in so much pain with peritonitis and no-one knew what was wrong. But those flashbacks are getting less with time and I'm finding myself excited about the future instead and feeling physically and emotionally stronger every day.
I have even bought a proper pair of jeans - not leggings, jeggings or jogging pants - proper demin jeans with a zip and everything. Small things like that are quite exciting really and all signs of recovery and just being 'normal' again. I haven't worn jeans for so long and living in leggings and smocks gets pretty depressing after a while. Simple things I used to take for granted before like eating, sleeping, exercise and even wearing jeans, I'm so grateful for now. It's certainly been a life changing experience.
So, we are on holiday this weekend and are off to climb mountains, ride bikes and have fun in the Lake District. I cannot wait.. the next blog will be a photo of me at the top of a mountain!
Thursday 25 August 2011
Monday 22 August 2011
No-one said it would be easy!
I woke up this morning feeling like I'd run a marathon. I hadn't of course.. but over the last few days I've done a short run every day, culminating in my longest run yesterday of 40 minutes and all in all I'm feeling pretty tired. So tired in fact that I nearly cancelled a bike ride that I had planned this afternoon - but in the end I was really glad I didn't. I went out with Hatty and Sue (who is also recovering from illness) and we took on some serious hills and rose to the challenge! I felt stronger and fitter than last week and although we didn't ride quite as far, it was lovely to be out and I can feel my confidence returning in terms of handling skills on the bike and pushing the pace up hills. Another fab ride with great company!
To be honest I've probably done a little too much over the last few days, but have been taking advantage of hubby being at home to keep an eye on the boys and have just been grateful for a bit of peace and 'me' time. I love the freedom that running brings and being able to just escape for half an hour is utter bliss! Makes me realise just how much I've missed it over the last year.
I'm also loving that feeling of being 'tired' from exercise and being so active is helping my sleep and also my digestion which is still sluggish. But I'm also very aware of the need for rest - especially now while I'm still recovering - so I'm going to take a few days off, have a few early nights now and listen to what my tired body is telling me!
Running is feeling much harder in general though and so far it's not getting any easier. I feel like I'm lumbering - not running - and it's just SO tough. My form has gone to pieces and everything hurts and wobbles and I'm really not enjoying it much! You know that amazing feeling when you're running and everything is flowing, your body is floating along effortlessly almost in a meditative state??... well it's NOTHING like that. I can only hope it gets easier.
My race number came through for the Tunbridge Wells 10km - in exactly 3 weeks time - and I'm beginning to question my sanity in entering it so soon. It's a tough, hilly course and I know it's going to be really hard. It's a lovely race though and in aid of Hospice in the Weald where my dad died, so a great cause and therefore always emotional. I'll just have to plug away at the running before race day and hope for the best! The goal is just to be there, get round and enjoy the atmosphere... or something like that. I know I'll feel frustrated not being able to run as fast as I want to... but I think some perspective might be in order. It's not just the 'only 9 weeks post surgery' bit.. but the '16 months of illness/no training and 3 other operations' bit that I need to remember.
One of the toughest things I'm finding in coping with the ileostomy, is the volume of fluid I have to drink. I have an increased risk of dehydration as I lose so much fluid and salts through my stoma. Consequently I have to keep on top of my fluid intake 24/7 which gets pretty annoying as I have to carry a waterbottle EVERYWHERE. I use nuun tablets in my water bottles every single day, which helps to replace the electrolytes but without the calories from sticky sports drinks and I drink a pint before I even get out of bed in the morning. I can feel ill pretty quickly if my salt or fluid levels go down though, so it's going to be the biggest challenge as I increase the distances that I'm running and riding. It's a great excuse to have a 'guilt free' packet of salty crisps though!
Alcohol is another major challenge and contributes to the dehydration problems even if I just have one glass of wine. I can have a hangover after 2 glasses and find myself hunting out the lowest alcohol percentage on bottles and mixing it with water! so I'm finding it's best to keep it to the minimum. Not necessarily a bad thing.. just another step on the learning curve. One of my online 'bag buddies' commented on a forum that he had 3 glasses of wine and ended up in hospital on an IV drip. So I guess I'll just have to be cautious - I never want to see another hospital again, especially for a hangover!
So here I am... 6 weeks post surgery today and I've just done 4 consecutive days of exercise. A total of 2.5 hours of training over 4 days. No it wasn't easy at all, there were bits I didn't really enjoy, but I did it and I'm well on the way to recovery. I'm seeing my surgeon on Wednesday for 'sign off' (I hope) and can't wait to tell him how well I'm doing.
None of what I'm trying to do is easy, but I'm not complaining - I'm just trying to create an accurate and honest record of my feelings and challenges. I'm lucky there was a solution to my illness and I can begin to do the things I love again - even if it's a bit hard right now. I'm also blessed with an amazing support network of friends and family with my fantastic hubby right at the top. He has no qualms about the bag or the implications and I'm incredibly lucky to have him.
So, I'm going to finish by stealing a quote that my friend Tony posted on his blog today and it made me smile... 'The secret of happiness is to count your blessings while others are adding up their troubles'. How true.
Right I'm off for a rest now! Promise...
To be honest I've probably done a little too much over the last few days, but have been taking advantage of hubby being at home to keep an eye on the boys and have just been grateful for a bit of peace and 'me' time. I love the freedom that running brings and being able to just escape for half an hour is utter bliss! Makes me realise just how much I've missed it over the last year.
I'm also loving that feeling of being 'tired' from exercise and being so active is helping my sleep and also my digestion which is still sluggish. But I'm also very aware of the need for rest - especially now while I'm still recovering - so I'm going to take a few days off, have a few early nights now and listen to what my tired body is telling me!
Running is feeling much harder in general though and so far it's not getting any easier. I feel like I'm lumbering - not running - and it's just SO tough. My form has gone to pieces and everything hurts and wobbles and I'm really not enjoying it much! You know that amazing feeling when you're running and everything is flowing, your body is floating along effortlessly almost in a meditative state??... well it's NOTHING like that. I can only hope it gets easier.
My race number came through for the Tunbridge Wells 10km - in exactly 3 weeks time - and I'm beginning to question my sanity in entering it so soon. It's a tough, hilly course and I know it's going to be really hard. It's a lovely race though and in aid of Hospice in the Weald where my dad died, so a great cause and therefore always emotional. I'll just have to plug away at the running before race day and hope for the best! The goal is just to be there, get round and enjoy the atmosphere... or something like that. I know I'll feel frustrated not being able to run as fast as I want to... but I think some perspective might be in order. It's not just the 'only 9 weeks post surgery' bit.. but the '16 months of illness/no training and 3 other operations' bit that I need to remember.
One of the toughest things I'm finding in coping with the ileostomy, is the volume of fluid I have to drink. I have an increased risk of dehydration as I lose so much fluid and salts through my stoma. Consequently I have to keep on top of my fluid intake 24/7 which gets pretty annoying as I have to carry a waterbottle EVERYWHERE. I use nuun tablets in my water bottles every single day, which helps to replace the electrolytes but without the calories from sticky sports drinks and I drink a pint before I even get out of bed in the morning. I can feel ill pretty quickly if my salt or fluid levels go down though, so it's going to be the biggest challenge as I increase the distances that I'm running and riding. It's a great excuse to have a 'guilt free' packet of salty crisps though!
Alcohol is another major challenge and contributes to the dehydration problems even if I just have one glass of wine. I can have a hangover after 2 glasses and find myself hunting out the lowest alcohol percentage on bottles and mixing it with water! so I'm finding it's best to keep it to the minimum. Not necessarily a bad thing.. just another step on the learning curve. One of my online 'bag buddies' commented on a forum that he had 3 glasses of wine and ended up in hospital on an IV drip. So I guess I'll just have to be cautious - I never want to see another hospital again, especially for a hangover!
So here I am... 6 weeks post surgery today and I've just done 4 consecutive days of exercise. A total of 2.5 hours of training over 4 days. No it wasn't easy at all, there were bits I didn't really enjoy, but I did it and I'm well on the way to recovery. I'm seeing my surgeon on Wednesday for 'sign off' (I hope) and can't wait to tell him how well I'm doing.
None of what I'm trying to do is easy, but I'm not complaining - I'm just trying to create an accurate and honest record of my feelings and challenges. I'm lucky there was a solution to my illness and I can begin to do the things I love again - even if it's a bit hard right now. I'm also blessed with an amazing support network of friends and family with my fantastic hubby right at the top. He has no qualms about the bag or the implications and I'm incredibly lucky to have him.
So, I'm going to finish by stealing a quote that my friend Tony posted on his blog today and it made me smile... 'The secret of happiness is to count your blessings while others are adding up their troubles'. How true.
Right I'm off for a rest now! Promise...
Tuesday 16 August 2011
'I may not be there yet, but I'm closer than I was yesterday'. Unknown
And so I am...
Today I've got that lovely tired feeling you get after hard physical exertion - something I haven't felt for a long time. Yesterday, along with my friend Hatty, I cycled 23 miles - my longest ride since June 2010 (14 months ago). To begin with I was pretty nervous, especially about the hills, and took it very easy not wanting to push myself. The feeling of being out of breath is a bit alien! But as the ride went on I could feel my confidence grow and towards the end I was starting to push the pace a little and felt stronger - although the hills were still tough. It was a great ride, we had a lovely chat and it was fantastic to be out in the beautiful countryside. To be truthful we'd only planned to ride 15-20 miles depending on how we felt, but we did take a little unintentional 'detour'.. so it was perhaps a bit more than I should have done at this stage. I was tired afterwards, and yes I'm pretty weary today. But it's a different sort of tired - a 'post exercise tired' not an 'ill tired'.. and there's a huge and wonderful difference!
It's not just my lack of fitness that's a problem though. The loss of confidence in my body, fitness and ability is profound and has taken me by surprise. I've been out of the game so long I've lost the ability know what my body can do (or not) and it's going to take a while to not only regain fitness, but rebuild that lost confidence and ability. That will go hand in hand with my recovery though, and I as know from coaching beginner runners and personal training with cardiac rehab clients, confidence comes with improved fitness and seeing results - however small.
Over the last few days I've noticed that I've started to forget the bag is even there. There is no discomfort now the stitches are out, I don't feel it at all when I'm running or riding and I've not had a leak for over a week! result! this all helps build my confidence in what I can do, clothes I can wear and places we can go. Eating is just a joy now too and I'm loving the fact I can eat fruit, meat and salad and my body is feeling healthier as a result already. We are having a family weekend away soon and staying in a boutique hotel/gastro pub which has a reputation for amazing food. Now I can eat again properly and not worry about the consequences of every mouthful, I'm so excited about going away and being able to enjoy a delicious meal and good wine. It makes me realise just how miserable my life was before I had this surgery and how grateful I am that there was a solution.
Every day I feel like I'm progressing and every time I go out - whether it's for a run or a ride - I do a little bit more, feel stronger and more positive. I've got a couple of 10km events already in the pipeline, but find my mind racing ahead and wondering what I might be capable of doing in the long term. Could I EVER contemplate that Ironman I never got to do? It would be a huge challenge given everything, but it's not impossible. There is an athlete in America who has an ileostomy and has completed Hawaii Ironman - an incredible achievement for any triathlete, let alone someone dealing with the challenges of an ileostomy. His story is here John Dermengian - I keep reading it and wondering... could I do that too?? but I mustn't get ahead of myself. This is all about small steps - but it's certainly a carrot that is dangling and just thinking about it gives me goosebumps. One line in his article really stands out 'Opportunity comes from adversity'.. what a great attitude. I love that.. it's so true.
I have an entry for the London Marathon next April which was transferred from this year when I wasn't well. Could I really do it this time?? I've done it 3 times before and can easily imagine the amazing atmosphere, cheering crowds and emotions I'd feel.. not to mention the pain and hard work involved. The London Marathon is emotional at the best of times, but to be able to get fit enough to do it given what I've been through, would be an amazing achievement. Is 8 months really enough time to recover properly from 14 months of illness and 4 operations, and train for a marathon? Well lets give it a try...
When I was a little girl, my lovely old dad used to tell me I could do anything. He instilled a confidence in me to try anything and not be afraid of failure. I'll never forget taking my driving test. We couldn't get a slot for the test in our home town and so he said 'ask if there is anywhere else you can do it'.. 'yes there's a slot in Wrexham next week' was the reply. Wrexham was 45 miles away, I'd never been there and it meant the test would be only 10 days after my 17th birthday. 'Ok' he said 'lets do it'. He taught me to drive in 10 days and I passed first time. My dad died 6 years ago, and I really miss him, his encouragement and his confidence in me. He believed I could do anything and let me try even though I might fail. I'll be forever grateful to him for that gift.
Today I've got that lovely tired feeling you get after hard physical exertion - something I haven't felt for a long time. Yesterday, along with my friend Hatty, I cycled 23 miles - my longest ride since June 2010 (14 months ago). To begin with I was pretty nervous, especially about the hills, and took it very easy not wanting to push myself. The feeling of being out of breath is a bit alien! But as the ride went on I could feel my confidence grow and towards the end I was starting to push the pace a little and felt stronger - although the hills were still tough. It was a great ride, we had a lovely chat and it was fantastic to be out in the beautiful countryside. To be truthful we'd only planned to ride 15-20 miles depending on how we felt, but we did take a little unintentional 'detour'.. so it was perhaps a bit more than I should have done at this stage. I was tired afterwards, and yes I'm pretty weary today. But it's a different sort of tired - a 'post exercise tired' not an 'ill tired'.. and there's a huge and wonderful difference!
It's not just my lack of fitness that's a problem though. The loss of confidence in my body, fitness and ability is profound and has taken me by surprise. I've been out of the game so long I've lost the ability know what my body can do (or not) and it's going to take a while to not only regain fitness, but rebuild that lost confidence and ability. That will go hand in hand with my recovery though, and I as know from coaching beginner runners and personal training with cardiac rehab clients, confidence comes with improved fitness and seeing results - however small.
Over the last few days I've noticed that I've started to forget the bag is even there. There is no discomfort now the stitches are out, I don't feel it at all when I'm running or riding and I've not had a leak for over a week! result! this all helps build my confidence in what I can do, clothes I can wear and places we can go. Eating is just a joy now too and I'm loving the fact I can eat fruit, meat and salad and my body is feeling healthier as a result already. We are having a family weekend away soon and staying in a boutique hotel/gastro pub which has a reputation for amazing food. Now I can eat again properly and not worry about the consequences of every mouthful, I'm so excited about going away and being able to enjoy a delicious meal and good wine. It makes me realise just how miserable my life was before I had this surgery and how grateful I am that there was a solution.
Every day I feel like I'm progressing and every time I go out - whether it's for a run or a ride - I do a little bit more, feel stronger and more positive. I've got a couple of 10km events already in the pipeline, but find my mind racing ahead and wondering what I might be capable of doing in the long term. Could I EVER contemplate that Ironman I never got to do? It would be a huge challenge given everything, but it's not impossible. There is an athlete in America who has an ileostomy and has completed Hawaii Ironman - an incredible achievement for any triathlete, let alone someone dealing with the challenges of an ileostomy. His story is here John Dermengian - I keep reading it and wondering... could I do that too?? but I mustn't get ahead of myself. This is all about small steps - but it's certainly a carrot that is dangling and just thinking about it gives me goosebumps. One line in his article really stands out 'Opportunity comes from adversity'.. what a great attitude. I love that.. it's so true.
I have an entry for the London Marathon next April which was transferred from this year when I wasn't well. Could I really do it this time?? I've done it 3 times before and can easily imagine the amazing atmosphere, cheering crowds and emotions I'd feel.. not to mention the pain and hard work involved. The London Marathon is emotional at the best of times, but to be able to get fit enough to do it given what I've been through, would be an amazing achievement. Is 8 months really enough time to recover properly from 14 months of illness and 4 operations, and train for a marathon? Well lets give it a try...
 |
| My lovely dad |
Saturday 13 August 2011
Running.. again!
Anyway... today's run was a whole 7 minutes longer than the one I did on Tuesday. 27 lovely minutes of running (shuffling). I'm not measuring distance yet, it would be too demoralising. But it's a short route around my house, with a few hills and I only had to walk up one of them. To be honest my legs (and arms too!) were pretty sore after Tuesday's 20 minute jaunt, so I've been cautious about making sure I was feeling recovered before I tried anything else. I've also got quite a few aches and pains. My right ITB and knee aren't great, both calves are really tight, my right piriformus is niggling and something is going on in my left hamstring.
It's hardly surprising.. I've had 4 abdominal surgeries over the last year and have done next to no training for the last 14 months. All that lying about on hospital beds and sofas has affected my posture and core strength and that's not to mention the numerous incisions through my stomach which have caused immeasurable damage. I need to work really hard on re-building that, get plenty of sports massages and just be really careful. The last thing I need right now is a running injury!
I am also going to start a training diary again. I've always done this and found it really useful to not only track progress but look back over sessions and figure out what went well or not so well. It's also handy for tracking the cause of injury and illness. I'm hoping in 6 months time I can look back and be proud of how far I've come.. or perhaps just laugh! I've entered Tunbridge Wells 10km which is in exactly 4 weeks time. It's ironic that I did this race last year and it was my first race after surgery then too and I did it with the temporary bag I had at the time. My PB for 10km is 39.56 (some, ahem, years ago) and I ran Tunbridge Wells 10km last year in 54 minutes. It's hilly and it was only 8 weeks after surgery but I was quite proud of that given where I was at the time. I'm not putting ANY pressure on myself at all and don't really care about the time, but it'll just be interesting to see how it goes this year.
I'm not complaining because I'm feeling SO much better.. but this is all REALLY hard. I feel like a complete beginner again and I've never been so unfit in my entire life. Everyone keeps saying it'll come back really quickly, but I know how much work I've got to do. Not only to get my fitness back but avoid injury and manage the potential complications of dehydration, fuelling for longer runs and also the bag itself. I also estimate I've got about 10lb to lose as well.. quite how I managed to put on weight when I was ill for so long and not able to eat I'm not sure, but I did. I'd gone from training around 10 hours per week to lying about on the couch and eating mostly 'white' food as it was all I could tolerate. Everything is WAY more wobbly than it used to be too and (shock) I've got cellulite! How unfair is that!?
But I'm not going to beat myself up, I know I'm making great progress and I'm feeling really positive, energetic and just well, better! I just have to look back a few months when I was feeling so poorly, awake all night sobbing in pain, unable to eat, exercise or sleep, I can appreciate just how far I've already come. I don't feel depressed, nor am I grieving for my 'old' body, I don't resent the bag, nor do I wish things were any different. I am honestly grateful for my little stoma and glad I was able to have this surgery.
And do you know what the best part of today's run was? (aside from my lovely new shoes). As I was running along, I realised that I had completely forgotten that I even had an ileostomy - I didn't even notice it was there. Just how brilliant is that?!
Friday 12 August 2011
I enjoy convalescence. It is the part that makes the illness worth while. George Bernard Shaw
Oh I wish!
The school holiday is double edged sword. I'm utterly exhausted from dealing with daily (no make that hourly) sibling arguments and keeping on top of their schedules, but I'm loving spending this precious time with my gorgeous boys and feeling SO much better in myself.
I have to admit though, I'm finding it pretty challenging keeping two very lively boys busy and active. They're rather like puppies and need 'exercising' daily otherwise things get out of hand. My boys don't do things like sitting still, reading, colouring and jigsaws. They are proper muddy and tree climbing boys, which I love and wouldn't have any other way - but it just means keeping them busy and entertained. And that is tiring when I'm on top form, let alone just 4 weeks out of surgery. To make matters worse my eldest son has ADHD and to say he's 'lively' would be a bigger understatement than when Noah said 'it looks like rain'.
If they were at school, I'd probably allow myself an afternoon nap or at least 30 minutes on the sofa watching unspeakably bad daytime TV. But that can't happen.. the moment I sit down the wail of 'muuuuuummm' from another room raises my blood pressure to boiling point and requires some sort of intervention.
So I have developed a new found routine however and I don't feel guilty one bit - I am convalescing after all! It involves having a lie-in until about 8am with a cup of tea and my novel while the boys watch some cartoons on TV! it's blissful and just what I need to start my day - a tiny window of peace. If they were at school of course, I couldn't do it, so I'll enjoy it while it lasts. Every cloud has a silver lining..
Running!
So..on Tuesday, hubby got home early from work, so I grasped the opportunity pulled on my trainers and said 'I'm going for a run (shuffle), if I'm not back in 30 minutes send out the search parties'. My first run since surgery and my first proper run in about 2 months. And set off thinking I might manage 10 minutes, then need to walk. I surprised myself by not only being able to run for 20 whole minutes without stopping but felt pretty fantastic too. I bounced along the road feeling full of energy and positivity! I'm now wondering if I could take part in Tunbridge Wells 10km which is only 4 weeks away. Rather bizzarely I did this same race last year with my temporary ileostomy which I had at the time. And have done nothing since.. yes I think I might give it a go.
I've also recently bought an ID bracelet for when I'm out running or riding.
It's a sport band you wear around your wrist and has details of your name, GP and emergency contacts, medical info etc inside. I worry that if something was to happen to me when I'm out and medics don't know about my ileostomy, I may not receive the right treatment. One complication of having an ileostomy is that I can get very dehydrated and suffer from low electrolyte levels. If I was to get into this state when out on my own and become unconscious, I'd possibly just need IV fluids so this information is stored in my band. I think it's probably a good investment of £14 that everyone should make. Be safe out there!
Leaks - SORTED!
You'll also remember I've been struggling with leaks from the bag. Utterly demoralising and depressing to be honest. Not being able to work out what was going on or why was frustrating and making me feel quite miserable. However, my amazing stoma nurse Lesley, came round on Tuesday morning and between us we figured out what I've been doing wrong. Without going into too much detail, I had some plastic spiky stitches around the stoma which was preventing me from getting a good seal with the wafer (the bit that sticks onto my stomach). In addition I had been cutting the hole too small which was pinching the stoma and forcing the 'output' under the wafer and causing a leak. So she removed the stitches and we cut a bigger hole for the stoma - and BINGO! so far so good. No leaks since. My fingers are firmly crossed.
So it's the weekend now and I'm looking forward to being able to go for another run and maybe a bike ride too. On Sunday we are going to our Annual BBQ with our running club and I'm really looking forward to catching up with all our friends. We couldn't go last year as I was still too sick.. but this year I'll be enjoying a burger, sausage and glass of wine with the rest of them! Can't wait.
The school holiday is double edged sword. I'm utterly exhausted from dealing with daily (no make that hourly) sibling arguments and keeping on top of their schedules, but I'm loving spending this precious time with my gorgeous boys and feeling SO much better in myself.
I have to admit though, I'm finding it pretty challenging keeping two very lively boys busy and active. They're rather like puppies and need 'exercising' daily otherwise things get out of hand. My boys don't do things like sitting still, reading, colouring and jigsaws. They are proper muddy and tree climbing boys, which I love and wouldn't have any other way - but it just means keeping them busy and entertained. And that is tiring when I'm on top form, let alone just 4 weeks out of surgery. To make matters worse my eldest son has ADHD and to say he's 'lively' would be a bigger understatement than when Noah said 'it looks like rain'.
If they were at school, I'd probably allow myself an afternoon nap or at least 30 minutes on the sofa watching unspeakably bad daytime TV. But that can't happen.. the moment I sit down the wail of 'muuuuuummm' from another room raises my blood pressure to boiling point and requires some sort of intervention.
So I have developed a new found routine however and I don't feel guilty one bit - I am convalescing after all! It involves having a lie-in until about 8am with a cup of tea and my novel while the boys watch some cartoons on TV! it's blissful and just what I need to start my day - a tiny window of peace. If they were at school of course, I couldn't do it, so I'll enjoy it while it lasts. Every cloud has a silver lining..
Running!
So..on Tuesday, hubby got home early from work, so I grasped the opportunity pulled on my trainers and said 'I'm going for a run (shuffle), if I'm not back in 30 minutes send out the search parties'. My first run since surgery and my first proper run in about 2 months. And set off thinking I might manage 10 minutes, then need to walk. I surprised myself by not only being able to run for 20 whole minutes without stopping but felt pretty fantastic too. I bounced along the road feeling full of energy and positivity! I'm now wondering if I could take part in Tunbridge Wells 10km which is only 4 weeks away. Rather bizzarely I did this same race last year with my temporary ileostomy which I had at the time. And have done nothing since.. yes I think I might give it a go.
It's a sport band you wear around your wrist and has details of your name, GP and emergency contacts, medical info etc inside. I worry that if something was to happen to me when I'm out and medics don't know about my ileostomy, I may not receive the right treatment. One complication of having an ileostomy is that I can get very dehydrated and suffer from low electrolyte levels. If I was to get into this state when out on my own and become unconscious, I'd possibly just need IV fluids so this information is stored in my band. I think it's probably a good investment of £14 that everyone should make. Be safe out there!
Leaks - SORTED!
You'll also remember I've been struggling with leaks from the bag. Utterly demoralising and depressing to be honest. Not being able to work out what was going on or why was frustrating and making me feel quite miserable. However, my amazing stoma nurse Lesley, came round on Tuesday morning and between us we figured out what I've been doing wrong. Without going into too much detail, I had some plastic spiky stitches around the stoma which was preventing me from getting a good seal with the wafer (the bit that sticks onto my stomach). In addition I had been cutting the hole too small which was pinching the stoma and forcing the 'output' under the wafer and causing a leak. So she removed the stitches and we cut a bigger hole for the stoma - and BINGO! so far so good. No leaks since. My fingers are firmly crossed.
So it's the weekend now and I'm looking forward to being able to go for another run and maybe a bike ride too. On Sunday we are going to our Annual BBQ with our running club and I'm really looking forward to catching up with all our friends. We couldn't go last year as I was still too sick.. but this year I'll be enjoying a burger, sausage and glass of wine with the rest of them! Can't wait.
Monday 8 August 2011
4 weeks post surgery... cycling!
If I'm honest, I enjoy cycling more than running sometimes. I love the feeling of speed and freedom, and being able to ride miles and miles from home is so liberating. I'm also lucky to have a gorgeous bike which I've really missed riding. So on Saturday morning I got up early and decided I'd take it out for a little spin - my first ride since surgery and my first in about 7 weeks. In some ways at this stage of my recovery riding is a better choice than running as it's low impact and slightly less challenging.I rode only 8 miles and it was pretty flat.. but it was glorious! The sun was shining, the scenery was lovely and I felt exhilarated.
To put this in context however, before I got ill I'd think nothing of riding 70 miles and then going for a run afterwards.. so 8 miles felt pretty lame. But I'm trying really hard to be patient and realistic.. but anyone who knows me, knows that's not easy.
Anyway, I felt stronger and more energetic than I have for about 9 months. I felt like I wanted to push the pace a bit, feel my heart rate rising and felt well, just like the old 'me'.. it gave me a glimmer of hope that some day I might be able to race again. I came home with a HUGE smile on my face!
In terms of my new 'friend'.. Check out the photo - I was thrilled to be able to wear my normal cycling kit and you can't even see the bag (you might need a second mortgage for Assos shorts, but they're great if you have an ileostomy because of the wide flat waistband). I also tried out something called 'sure seals' which have been recommended by anyone active who has an ileostomy. Sure Seals are like large shaped plasters to make the bag more secure especially useful for people who go running, cycling or swimming. They worked like a charm and I felt more confident knowing that even if I did have a leak, it would stay in place.
I have to confess though, I was pretty exhausted later in the day and my quads and glutes are still sore! and all from an 8 mile ride for goodness sake...
Today is exactly 4 weeks since I had surgery and each day brings more energy and normality. Yesterday we enjoyed a fantastic family day out at Port Lympne Wild Animal Park and it was just brilliant to feel well enough to go out and enjoy something like that which I haven't been able to do for the last 10 months.
Yes today I'm exhausted, but it's a good 'tired'. I'm beginning to realise that recovery from things - whether that be an 8 mile bike ride, or a family day out - is going to take longer and I need to account for that and allow time to rest. But I'm starting to feel a bit more like 'me' and I can't begin to tell you how grateful I am for that.
Friday 5 August 2011
Where are my running shoes???
I know, I know.. two blogs in one day is a bit self indulgent, but this one is very different to the other one and slightly more educational.
Firstly I wanted to show you a photo of my 'kit'. The bag in the centre of the photograph is what I have to wear attached to my stomach, 24 hours a day, 7 days a week. The whole in the centre is cut a little larger to fit over my stoma, then the whole thing sticks like glue to my belly (aside from when it leaks). The output from my stoma drains into the bag and I empty it 8-10 times per day from the little flap at the bottom.
The other things around it are the powders, adhesive removers, wipes, scissors etc that I have to use every time I change it. It's important to use the right products to avoid skin irritation or break down which would then mean huge problems.
I have to carry all this stuff around with me all the time just in case of a leak. No more small and pretty handbags for me. It reminds me of when the boys were babies and we went everywhere with a giant nappy bag! I have my very own nappy bag now.. not sure how I'd carry it in an Ironman? anyway..
There are also challenges with clothing to hide it but also be comfortable - mostly I'm at the 'leggings and smock stage' and testing out all sorts of combinations of underwear and swimwear - but all in all it's pretty discreet and most people would never even notice it. In fact I bet you know someone with a bag, you just don't know it.
I read somewhere that there are around 100,000 people in the UK with an ileostomy. That means around 1 in every 600 people. People have them for all sorts of reasons, mainly crohns disease, ulcerative colitis, diverticulitis, colonic inertia and cancer.. all diseases affecting the colon and all very debilitating. The main UK charity is called The Ileostomy Association and they provide not only fantastic advice online, forums and even funding to the disadvantaged, but when I was considering this surgery had a lovely phonecall with a lady called Anne who had time to listen and provide support. Charities like this are some of the smallest in the UK and need all the support they can get. It's probably something I'd like to try and get involved in the future and do some fundraising for them too.
I've also come across a couple of other women in the US who I can really relate to.. one called Heidi who blogs about her outdoor adventures and Run4Pancakes who is a runner. They are the same age as me but much further down the line in terms of their recovery.. they provide fantastic inspiration and are proof that having an ileostomy doesn't have to stop you living your life.
Talking of inspiration.. here is the amazing story of Rob Hill who has an permanent ileostomy and actually conquered Everest.
Right.. where are my running shoes????
One step at a time..
"One may walk over the highest mountain one step at a time." – John Wannamaker, United States businessman.
I love this quote.. but right now I feel like I have a huge mountain to climb and I'm having trouble taking those small steps. My emotions are all over the place. One minute I feel euphoric, the next frustrated and demoralised. Normal responses to what I've gone through I suppose, but I feel like I'm re-building my life from scratch.
It's not just basic fitness that I've lost, but my confidence and ability in all aspects of my life. Deep down I know I'll get there (wherever 'there' might end up being) but it's just tough right now. Luckily my lovely hubby is incredibly supportive, the kids are, well, just keeping me busy, and my friends and mum are all there ready to listen to me moan or provide an encouraging word. I'm lucky.. some people go through this alone.
Fitness and competitive sport has always been a huge part of my life. It's who I AM. Not just a hobby, but my career, passion, my social circle and my life. One of my motivations for having this surgery was so I could get that life back.. but it's going to take a while. Firstly my body composition has changed beyond all recognition.. having gone from exercising 10-12 hours per week for an Ironman, I turned into a sick couch potato overnight and then spent 14 months that way. That meant I've gained body fat (lots) and lost muscle (even more). Years of carefully constructed training plans, core stability work and good nutrition were wiped out in the blink of an eye! Still.. I'm a girl who likes a challenge, so I just have to keep focused on the mountain and edge my way up it. But jeezzz.. this is one bloody big mountain.
As an 'ileostomate' (what a word) I have certain challenges above and beyond the bag hanging around my stomach. The colon normally absorbs electrolytes (sodium and potassium) from your diet, but now mine is bypassed I am at risk of dehydration, so I have to take additional salt in my diet and ensure I keep my fluid intake high. Nuun tablets dissolved in a water bottle seem to be doing the trick - and have the added benefit of making me feel like an athlete again.
Secondly without a colon and only a tiny hole for 'food' to come out of the other end, I have to make sure I chew everything to within an inch of it's life and avoid things like sweetcorn, stringy celery etc in case it causes a blockage. A blueberry that I ate on Monday (accidently whole) made a reappearance in the bag on Tuesday still in the same state.. as my son says, it's fascinating and gross at the same time!
And thirdly, I'm at risk of hernia around the stoma - one of my greatest fears. So I need to get to grips with some serious core and postural work if I'm going to avoid it and get back on the roads without injury.
My good friends Mitch and Elle at Stride UK in Brighton are going to devise a strength and conditioning programme for me to do just that. I also need to get my nutrition in hand. I need more protein as I heal and I have to address this discrepancy in body fat! but I guess that will take time and I'm hoping will happen gradually with better nutrition and some exercise.
There's also the small matter of being able to run for anything more than 5 minutes at a time without gasping for breath, but it's still early days (4 weeks from surgery on Monday) so I just need to be patient and keep inching up that mountain. One step at a time..
I love this quote.. but right now I feel like I have a huge mountain to climb and I'm having trouble taking those small steps. My emotions are all over the place. One minute I feel euphoric, the next frustrated and demoralised. Normal responses to what I've gone through I suppose, but I feel like I'm re-building my life from scratch.
It's not just basic fitness that I've lost, but my confidence and ability in all aspects of my life. Deep down I know I'll get there (wherever 'there' might end up being) but it's just tough right now. Luckily my lovely hubby is incredibly supportive, the kids are, well, just keeping me busy, and my friends and mum are all there ready to listen to me moan or provide an encouraging word. I'm lucky.. some people go through this alone.
Fitness and competitive sport has always been a huge part of my life. It's who I AM. Not just a hobby, but my career, passion, my social circle and my life. One of my motivations for having this surgery was so I could get that life back.. but it's going to take a while. Firstly my body composition has changed beyond all recognition.. having gone from exercising 10-12 hours per week for an Ironman, I turned into a sick couch potato overnight and then spent 14 months that way. That meant I've gained body fat (lots) and lost muscle (even more). Years of carefully constructed training plans, core stability work and good nutrition were wiped out in the blink of an eye! Still.. I'm a girl who likes a challenge, so I just have to keep focused on the mountain and edge my way up it. But jeezzz.. this is one bloody big mountain.
As an 'ileostomate' (what a word) I have certain challenges above and beyond the bag hanging around my stomach. The colon normally absorbs electrolytes (sodium and potassium) from your diet, but now mine is bypassed I am at risk of dehydration, so I have to take additional salt in my diet and ensure I keep my fluid intake high. Nuun tablets dissolved in a water bottle seem to be doing the trick - and have the added benefit of making me feel like an athlete again.
Secondly without a colon and only a tiny hole for 'food' to come out of the other end, I have to make sure I chew everything to within an inch of it's life and avoid things like sweetcorn, stringy celery etc in case it causes a blockage. A blueberry that I ate on Monday (accidently whole) made a reappearance in the bag on Tuesday still in the same state.. as my son says, it's fascinating and gross at the same time!
And thirdly, I'm at risk of hernia around the stoma - one of my greatest fears. So I need to get to grips with some serious core and postural work if I'm going to avoid it and get back on the roads without injury.
My good friends Mitch and Elle at Stride UK in Brighton are going to devise a strength and conditioning programme for me to do just that. I also need to get my nutrition in hand. I need more protein as I heal and I have to address this discrepancy in body fat! but I guess that will take time and I'm hoping will happen gradually with better nutrition and some exercise.
There's also the small matter of being able to run for anything more than 5 minutes at a time without gasping for breath, but it's still early days (4 weeks from surgery on Monday) so I just need to be patient and keep inching up that mountain. One step at a time..
Wednesday 3 August 2011
Every burden is a blessing
Apologies, but it's time for a little grumble...All in all I am doing so much better, I feel great and my recovery is going brilliantly considering it's only been three weeks since surgery. I know that things could be so much worse in general, and at the end of the day the bag is just a minor inconvenience and 'shouldn't' really stop me doing anything. But I guess I'm just feeling a little frustrated and a bit low the last couple of days.
Had another leak from the bag yesterday and whilst it was at home and was easy to address quickly at home (much easier than by the side of the road!) it just dents my confidence in what I might be able to do and my confidence in the products I'm using. And lets face it, it's never nice having poop leaking all over your stomach..
I think the realisation that this bag is going to be there forever is now dawning. I'm swinging wildly from euphoria that I'm better, feeling great and able to eat again, to feeling a little miserable that I'm stuck with this and the limitations. And when it leaks.. well that's just plain annoying and feels like a massive set back.
I'm part of a forum online called healingwell.com where other people with ileostomies share their stories and support each other. My 'bag friends' as hubby calls them! But they are a source of amazing support, encouragement and advice and I wouldn't be where I am now without them. Many people on there share the same emotions - we wouldn't be human really otherwise and I know they'll say it's early days and what I'm feeling is perfectly normal.
Many of them have lived with stomas for years and I'm a relative newbie at all of this. But patience has never been my strong point and I'm just desperate to recover, cope with this bl**dy bag and get back to fitness. But.. it's probably time for my own advice and I know what I'd be saying to someone else in the same boat. It's only been 3 weeks and I need to stop being so hard on myself.
So.. it's time for a little perspective and to give myself some TLC. Sometimes this feels like a huge burden.. but I have to change my mindset and appreciate what it brings me instead. No need to be grumpy really is there?..
"Every burden is a blessing" Robert H. Schuller
Monday 1 August 2011
Small achievements
I don't intend to continue blogging on a daily basis, but I must share today's achievement.. swimming!
The fact it was actually a kid's float session is neither here nor there. I donned a strange combo of a triathlon crop top and pair of non-matching triathlon swimming shorts, but it seemed to hide everything well. Confirmed by my eldest son who actually said 'Mum!! you forgot to put your bag on!'.
I tried a few tentative lengths of front crawl (the first time since June 2010) dodging the kids and their floats - and everything seemed to feel alright. Success! The bag didn't burst, leak or float away or anything either which was pleasing, nothing hurt and I can just about remember how to do it. 10 lengths in total.. ha ha ha.
But another small achievement and another 'first'... all steps in the right direction. Although by the time we got home I was so tired I fell asleep on the floor playing Lego with my youngest.. he wasn't impressed.
The fact it was actually a kid's float session is neither here nor there. I donned a strange combo of a triathlon crop top and pair of non-matching triathlon swimming shorts, but it seemed to hide everything well. Confirmed by my eldest son who actually said 'Mum!! you forgot to put your bag on!'.
I tried a few tentative lengths of front crawl (the first time since June 2010) dodging the kids and their floats - and everything seemed to feel alright. Success! The bag didn't burst, leak or float away or anything either which was pleasing, nothing hurt and I can just about remember how to do it. 10 lengths in total.. ha ha ha.
But another small achievement and another 'first'... all steps in the right direction. Although by the time we got home I was so tired I fell asleep on the floor playing Lego with my youngest.. he wasn't impressed.
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