Tuesday, 6 October 2009
Firstly me and Danny was out with some friends, and I was asked how long I had been off work, I told him that I went back full time after 3 weeks, he couldn't believe it, and then it dawned on me, just how quickly everything has happened. I have dealt with the physical pain and feelings towards the operation and everything that goes with it, but now I am starting to feel the emotional feelings towards it too and feel quite overwhelmed when I think about it.
I have been looking through photo's since I have been out of hospital, in the early stages when I was still a lot thinner and how my scar looked to how it looks now, and I can't quite believe it was only little over 6 months ago since the 1st operation, it's crazy!
I still get a real buzz out of doing my blog, when I receive lovely comments from people who have taken the time to read it, and hope sincerely that people can take something from it and it does help.
I hope next time I blog, that this is another stage I have gone through and moved on from. I think I just need to give myself time to think about it and absorb everything that has happened and also feel proud of going through it and coming through it stronger, just like everybody else who is going through or will be going through the same thing should think of themselves.
We all deserve a big pat on the back.
Sunday, 13 September 2009
I am back at work full time and have just fallen back into the usual routine with no major hiccups. It is good to be back to my usual routine, even though it's hard getting up on a morning, no change at all there!
I can eat pretty much anything I like, enjoy alcohol, and no urgency to use the toilet. It's been the best thing I have ever done and am feeling on top form.
Since I came out of hospital, I have started with restless leg, which is bloody awful. Only in bed though just as I am about to sleep, it starts spasaming and keeps me awake, which is really annoying. At first I thought it was quite funny but now it's just more annoying than anything.
I went for a massage at my Auntie's recently, to see if that would help. My consultation before hand I realised that I have been drinking too much fizzy drinks and I haven't got good circulation
which I keep on meaning to do some exercise which should help, but as yet it is just a good intention.
I laid off the fizzy drinks and that seems to have helped, but it isn't consistent so I can go a few weeks without it and all of a sudden it comes back.
I go and see my consultant next Tuesday, don't really have a lot to ask him since last time I saw him. I don't have any issues I can think of.
Monday, 15 June 2009
Thank you for taking the time to read my blog and I am glad it was of some interest to you. I'm not sure how to reply to you so I thought I'd just post it! I hope this is OK. If you send me your email address I can reply whenever needed.
The answer to your question about the steroids is thankfully no. No asacol or enemas or iron tablets in my case. The only thing I did and am continuing to take is imodium 4 times a day which is a massive relief.
I recovered quite quickly after my 1st operation, the first 2 weeks were the hardest and then, things start getting easier. My consultant thought I would have my stoma bag for 10 -12 weeks, but I bounced back quicker than I think he expected and I had the stoma bag off after 7 weeks.
The 2nd operation took me about a week to start feeling better. I can't stress enough how important it is to keep active, because even though it was a quicker recovery time I did suffer with back ache and cramp and the consultant said that was caused by not having any exercise. The total recovery time my consultant said would probably be 12 months but that can differ. I am hoping it will be before that, but that's because I am inpatient. Already though I can pretty much eat what I want, yes I do still need to go to the toilet quite frequently but I can hold it, so it definintely doesnt restrict me from doing anything.
I will definitely keep upto my blog and thank you again for taking the time out to leave a comment. I wish you all the best for the future and a speedy recovery. If there is anything else I can help you with please feel free to drop me another email. I'd love to hear from you and I will try and help you as much as I can.
I hope the above has answered your questions. Sorry I don't know your name, but best wishes to you and your family! Love Natalie.
Wednesday, 27 May 2009
As happy as I am that I am getting back to good health and we are now a healthy couple, I don’t ever want to forget what I have been through to the point where it doesn’t matter anymore, because it always will do and it means a hell of a lot to me to hopefully help people who are going through this and don’t really understand it.
There are a lot of good sites out there, the j pouch website I mentioned earlier (please see link on earlier post) especially to make you realise that you are not going through your experience on your own, there are people to help you.
I know it is hard for people to share this intimately with people who don’t have the condition and you may not feel you can explain the embarrassing aspects of the illness, but anytime you are feeling like there is no way out of all this, please keep faith there is.
There are people out there who can and want to help you through this and try and take comfort in that. It is a horrible, restricting condition to go through, but don’t underestimate positive thinking.
Make sure you and your family are prepared for the journey because the more understanding you have of it, the better you will be able to deal with it.
Tuesday, 26 May 2009
I found the pain was mostly in my anus as opposed to my actual wound, because for the first few days I was not eating hardly anything and it was only liquid coming out of me and was extremely uncomfortable whilst going to the toilet. It does say that also on the j pouch website that it is serious butt burn as they put it and I would have to agree.
I would say sudocrem is a must because the motion is still very liquidy and burns whilst going to the toilet.
The consultant doesn't want you to take imodium straight away, in case it puts pressure on the j pouch and in some cases in can pop as it has not expanded so as much as it is not nice it is essential in the early stages.
I have been to see the consultant today and he is happy for me to take it now, which is only 2 weeks on. Not pleasant at all for anybody going through it but essential, and sudocrem or other creams will help. Also fibre gel will help thicken up the motion, but again only a few weeks after the operation.
I am averaging about 8 - 9 bowel movements a day, which is nothing compared to what I thought it was going to be like. It is hard to sleep because you need to go to the toilet through the night, and you may want to get some water proof covers for the first few nights in case of leakages. I was using Tena ladies until yesterday, so again it doesn’t last long at all, but they are needed as you are trying to control it but at the same time it is also trying to control you. .
One thing I haven’t done enough of is exercise, so I would emphasise that to get exercising as quickly as possible, because I have had more aches and pains than last time probably because I haven’t done hardly any walking or anything which is a big mistake on my part.
But starting from tomorrow, the walking shall begin, no excuses!
I was dreading taking my dressing off my wound, because I was worried what it looked like. I really didnt need to worry as my scar is very neat. After a week I took the dressing off and it has been off ever since. Danny and myself has taken our nephew swimming several times without anything covering it, and there has been no problems.
My Mum asked if I would be embarrased when going on holiday and been in a bikini, I said absolutely not, I am so proud of that scar because it symbolises my good health and a happy future. I hope whoever has the operations shares my thoughts on that, because it is nothing at all to be ashamed of.
They insert some sort of dye into you which shows up any issues there maybe, lucky for me everything was as it should be. It is nothing to worry about at all, it is over within 10 minutes and I was very pleased to hear that everything looked well and I would be able to go ahead with the surgery on Wednesday.
I had my 2nd op last Wednesday 13th May, it wasn’t as long an operation as last time, but I remember coming round and instantly feeling sick and been moved from the operating table onto the bed to be wheeled back to my room. I was in an awful lot of pain. I got to my room and got transferred onto the bed, in immense pain.
I remember Danny was standing when I got back to the room, but as soon as he saw how much pain I was in he sat back down because he was so upset to see me like that.
The nurse asked me from 1- 10 how much pain I was in I said 9 the worst yet!
This is not to try and put anybody of this operation, but just to be mindful that it is not an easy thing to go through.
I again had a morphine tab which was not pumping fast enough for my liking, it released every 2 minutes and I really needed it more. I think I fell asleep a little while and woke up when my Mum & Dad and younger sister got there. The morphine started to make me itch terribly, and I couldn’t help but keep scratching my face, they all said my face was a right mess because of it, but I didn’t care it was unbearable. The nurses said that the majority of people get an allergic reaction to the morphine the second time round. They gave me a tablet and within a few hours the itching had stopped.
I woke up really grumpy I can’t quite remember why, but probably because of the discomfort.
The 1st night was awful, the nurses kept on coming in every hour to check on me, which was good that I wasn’t left, but I couldn’t sleep at all, because of the pain and discomfort.
6.00am one of the nurses came in to tell me that I must try to go to the toilet to see if the bowel was working. I managed it.....just.
Sunday, 10 May 2009
Or eat that slice of pizza that I knew I would suffer with. Or like last year for my Dad’s birthday we went out to a restaurant and I didn’t even finish my main meal before we had to leave, or the terrible mood swings I would have because of how I was feeling, things that however close you are to your partner/ family you can not fully explain to them for them to understand.
Some of the worst things that I remember is right at the start, when I hadn't been diagnosed with UC, We had gone to Danny's Dad's house for a curry and I suddenly came over all hot and sweaty and desperately needing some fresh air. The pain was unbearable I didn't have a clue what was going on.
We got home and I was just violently sick and retching, even though there was nothing in my stomach and it really ached. I just thought it was the curry been too hot for me or something not that that would be the start of things to come.
Or been out in the car usually on the way to work or back home from work and I would have to try and coax myself in to that it was all in my head and I didnt really need to go the toilet or the pain in my stomach wasnt so bad, and then the accident would happen, I just couldnt hold it in any longer and we are talking seconds before it happened, not like a normal person can hold it.
We recently went to Harrogate for a wedding, and we had gone out the night before and I was really careful what I ate in case of having a flare up, we were walking back to our hotel room after having a lovely night and instantly I needed to go, we were only 200 yards from our hotel but I had to rush in to a pub and go to the toilet but I didnt get there on time and had yet another accident. I ended up having to throw my leggings and underwear in the bin and walk out of the pub as if everything was normal.
It was bloody awful I tried to keep it together but as soon as I got back to the hotel I couldn't stop crying. Danny was brilliant once again, but that was hard knowing that the wedding was the next day and the same thing could easily happen again.
Luckily it didnt and I did try and have a good time, but it was always on my mind that it might just happen when I least expected it and might not be able to get to the toilet on time. As much as I had a good time I was pleased to be going home so that it was easier to deal with if it did happen.
I can't tell you what a hugh relief it is to not feel like that anymore, to not worry about going out even to the corner shop in case of it happening, that we can go out and thoroughly enjoy ourselves knowing that that is part of our history not our future.
We have a friends wedding coming up in July and I was so nervous about going in case the food didnt agree with me or that the toilets were too far away to get too. That I am pleased to say has all gone, now I can't wait to go and get dressed up feel nice and relaxed and just enjoy our time there.
It is an amazing feeling and I feel a very lucky lady.
I have received 2 letters through from the hospital today, 1 being that I have to go for my pre op next Monday 11th May to have my blood taken, urine tests and ecg tests and have a radiology which is basically a dye that they put inside your back passage to see if there are any leakages or anything that hasn’t healed like it should. If there is I’ve been told it is not a problem, it just means that the stoma bag needs to stay on a while longer and they carry the procedure out again 4 weeks after to see if everything has healed by that time.
My consultant was happy as I said with my recovery and feels confident that there won’t be any problem. My consultant said that he has carried out 58 of these operations and in all that time only 2 people have not been healed, so if he is confident so am I.
My consultant would like to carry out my operation next Wednesday 13th May, which I can’t quite believe. I’m so happy and again feel apprehensive just like I did before my first operation, even though I know that it will not be as big an operation, everything is moving so fast and I can’t believe that 6 weeks has passed already.
So 6 short weeks has passed now, and for some reason I am feeling quite un nerved about my second operation, don’t get me wrong I am happy with the operation been next week, but nobody seems to understand that even though this is not as big an operation as last time, I am feeling overwhelmed with it all, as everything is moving so fast. I don’t know why I’m feeling like this. I’m not so much worried about having the operation and I am really happy that my stoma bag will be gone, it is another step closer to a normal life.
I think what it is worrying me is the few weeks after the operation, I can imagine that it will be quite restricting, as I have been told that because I will be using my bowel normally for the first time in 6 weeks I will be going to the toilet up to 25 times a day, so really like having colitis again and I think that it will be harder the after math of this operation and it is taking its toll on me today. I have had quite a low day, not to be helped by having a monster hang over ( self inflicted I know) but everything just seems to be moving so fast and today I think it has just got on top of me a bit.
Even though I do want the stoma reversing straight away, I have definitely become more fond of it, because it has helped me so much and I have like I thought I would got used to it, cleaning it and bathing it, everything but actually putting the bag on.
We nearly got to Grassington and the bloody bag leaked, I couldn’t believe it and at the time I was upset because unfortunately I had just eaten 2 McDonalds burgers and the site was not pretty. My Dad didn’t know what to do, he was trying to console me and I was trying to clean up my stoma, It was a site let me tell you.
I can look back on it now and laugh but at the time it was embarrassing because every traffic light we stopped at we had an arctic lorry next to us who could look down and see what I was doing, he looked mortified another classic example of not understanding, but that’s not to say it is wrong, I didn’t know what a stoma looked like before having one, so it wasn’t his fault. I couldn’t help but laugh though, his face was a picture!
The stoma nurse came out to see me to check my stoma a day or so later and was a little concerned with my skin around the stoma as it was very red and very raw, due to the bags leaking and having to change them daily did not help the skin at all.
The liquid is easier to seep under the bag and cause sores, but it is a vicious circle if you don’t eat properly and the bags consistency is more liquid than porridge substance, it is going to leak, but because you are worrying the bag is going to leak, you don’t want to eat properly, so the cycle starts again.
Monday, 13 April 2009
Follow this link for more info: http://www.chooseandbook.nhs.uk/patients
It was bloody awful certainly something I wasn’t ready for and still aren’t now! The stoma nurse was brilliant as was Danny who was there throughout the ordeal (i’m so dramatic) but that is what it felt like to me. I found it really hard to look at it, never mind clean the damn thing.
My eldest sister was fantastic and she said the way to look at it is ‘this is your little friend, it is here to help you and you need to look after it, as it is you’ and to be honest when I do look at it that way, she is right it is afterall a part of me, it’s not something my surgeon has attached, this was in me and nobody else is grossed out by it or feels queasy by the sight of it, just me, but I know that I will be able to do change it but just not yet. Nobody is pressuring me to do it, which I think is the best way, because when I do decide to be brave and get on and do it, it is for me and nobody else.
I’ve heard that whilst you are having your bag changed, to stop the stoma being active it you wrap it in a cold paper towel this stops the activity whilst the stoma is being cleaned. I have only heard that today, I will try it and update my blog to let you know if it works.
Also to eat 2-3 large marshmallows before the bag is changed helps stop the stoma been active for up to 30 minutes.
The stoma changes in size so it is important for the first few weeks to measure it, mine started of at size 30 but then went down to 30 across 25 and now today it is 20 / 25. We did get told in the hospital it would change size some get bigger and some get smaller that’s just the way it goes.
warm the stoma bag up, it does adapt to your body heat but this just makes it a little bit easier. Warm it under your arm for a few minutes or under a pillow or something but it does help to stick faster.
When cutting the bag if it is still not the correct shape, give it a gentle tug that will soon get it into shape. (with gloves of course)
I cannot get used to the smell, it makes me feel sick so olbasol is a good one to put on a tissue whilst emptying your bag or vix under your nose.
I have found so far, is to change your bag on a morning before you have eaten and drunk anything, that way the stoma wont be active and it will take minimum time to put on. If you change your bag straight after you have eaten, that I have found is a good time, because the food is not yet digested it will take sometime to pass through into your stoma bag.
Cavalon is a really helpful spray for the skin round the stoma, it is not uncommon for the skin to become quite red and sore due to it been cleaned daily or every other day depending on your preference. I was quite worried about the bag been changed in case it hurt taking the bag off, but you get this off with a non sting adhesive remover and it doesnt hurt at all.
You will probably get told this by your stoma nurse but in case you don’t. Your motion needs to be of a porridge consistency, which it may not be in the first few days if you are drinking more than you are eating. I was advised to take some imodium to thicken up the motion which within a day you could tell the difference. You can take up to 8 tablets within 24 hours, I have only needed to take 4 a day and it works well. If the motion doesn’t thicken up with the imodium, nothing to worry about, there is some more tablets you can take that your stoma nurse can tell you about.
Peppermint tea / water is really good for trapped wind and being bloated, because if you are unfortunate enough to get trapped wind afterwards, like me that I found was a good one.
Ask your stoma nurse to explain what laperimide does and how it works and why it needs to be taken when it does. This will make you understand it better and use it properly.
I rang Danny and he came down within 10 minutes and off we went again. Everytime it was cleaned and dry and ready for the new bag to be fitted it would start again, like a naughty child or something, you have to laugh about it there is nothing you can do after all. So nearly an hour after cleaning it again it finally went on. We went to see my surgeon this afternoon, he was more than happy with my progress, the scar is so neat and tidy, it is weeping slightly but he wasn’t worried about it at all.
My surgeon did say that in case I was in 2 minds after having the surgery (which I wasn’t at all) there was a possibility that my bowel could have perforated and it had started to affect my appendix also which would have meant emergency surgery and no neat scars like I have got. It could possibly be 7-8 weeks when I go back in for the reversal which is fantastic as I thought it would be another 10 weeks. My surgeon told me he took 2 mtrs out of me which is 6 1/2 foot and i’m sure I have shrunk, some combat pants I wear usually fit me well but now they are dragging on the floor.
Oh well good excuse to buy some new clothes!!
From been on a high comes the lows which again I wasn’t prepared for 2 days before I was going home, I started to feel quite with drawn, very teary, vulnerable and overwhelmed. I was lucky because I had my family there everyday to see me and Danny was there the full day everyday, so I was never on my own and that is the way I wanted it. First day back home was again quite teary and overwhelming, but was so happy to be out to get some fresh air and be in my own surroundings. I really think that being positive is key, I think it really helps with your recovery time.
My new surgeon who carried out this operation, I only started seeing him in February 2009 and from the 1st consultation, I had my colonoscopy less than 2 weeks after we went back for our results and he said that it was worse that what he thought and couldn’t afford for me to have this operation in a few months time or even a months time because I was due for another flare up and a bad one by the sound of things. The surgeon then arranged for me to have the operation in March 2009 with my consent of course.
I couldn’t believe it not even a month since meeting him and he had done more for me than that rubbish consultant did in 3.5 years.
The Stoma Nurse who visited me recently told me that if I wouldn’t have had this operation when I did, within 10 years I would have had no choice as the risk of getting bowel cancer would have been far greater. Not an easy thing to hear but Thank God I have had it done.
My surgeon who I couldn’t recommend highly enough by the way, said to me before I had the surgery - ‘2 things my patients say to me having had the op is 1 - no more looking for a toilet whilst out in public and 2 - they wish they had known about the surgery long before’ doesn’t that sum it up perfectly for people who still are not sure about having this operation.
I remember coming round from the operation., apart from been extremely drowsy I can’t remember been in that much pain. To me the pain isn’t as bad as when I have eaten something that hasn’t agreed and rushing to the toilet, that is pain the feeling sick, hot sweats not really knowing what to do with yourself. That I found more painful than the actual immediate afterwards.
I wont lie and say that you’re not in any discomfort because of course you are, I suffered terribly with my shoulder which sounds silly but I had trapped wind in it and that pain was worse than the stoma and the pain in your muscles put together, it was bloody horrible, but its not just you going through this which I have hopefully made sure my family know. Yes it was me who had the surgery but the aftermath the emotional turmoil, you know as much as me, you don’t or wont want to see anybody you love in any pain and discomfort and that is what they see day after day if you’re not lucky. It is really hard to see somebody in pain and feel so helpless.
I didn’t see that they were helpless, they were doing more than they thought, just been there gave me a boost. Danny didn’t leave my side in the 5 days or the years before hand, he has been through this with me every step of the way, which hasn’t been easy, but we have got through it and it has made us stronger for it. I have the utmost respect for that man, for how he has dealt with it and kept me strong and positive, a lot wouldn’t have he definitely is my rock! I couldn’t have got through this without him or any of my family.
When I came round I was in Intensive Care, I remember Danny being there and saying my name as I was still in and out of consciousness, I was hooked up to drips and had a cafiter tube attached to me, I had a morphine tab in case the pain was too bad. I then remember my Mum & Dad being there and my sisters. I remember my Mum and my eldest sister crying and me saying that it was alright. I have heard and was told that when you are first in the icu you don’t remember a thing, but I remember quite a bit really. I remember my sisters sat at either side of me and they both kissing my hand and telling me I looked like I had colour in me, (I had fake tanned the day before) I don’t remember feeling in too much pain at that point probably because I had morphine and was extremely drowsy. My eldest sister phoned me at 3.00am in the morning, she couldn’t sleep so I was laid down talking to her for a good 15 minutes, that conversation I don’t remember but i’m glad it put her mind at rest I was okay, because it is also traumatic for your family to go through this too.
I was in the best place to be looked after and one of the Doctors who was looking after me was brilliant. I remember I couldn’t drink any water only allowed swabs to refresh my mouth. Then came the dreading sitting up the next morning, that was pretty horrendous the Dr said that I went green but did well not to faint because people usually do. I just remember being so hot and clammy and longing for my family a familiar face to be there. I then had to move from the bed to the chair beside the bed which I did and had a fan on me the whole time which helped...loads. I fell asleep on the chair and then I remember Danny walking in. I then I had to get from the chair into the wheel chair, this makes me cringe even now, I coughed without any notice I didn’t know I was going too oh my god the pain, the tears just rolled down my eyes. Anyway don’t remember too much about this day apart from being wheeled down to my room I remember trying to straighten my hair feeling full of energy which quickly went. I got into bed and I don’t really remember too much more.apart from my mum and dad and my sisters coming with some beautiful flowers for me.
The 2nd night in hospital was awful, I hadn’t had a particular great day mainly with the pain in my shoulder. Through the night I was very uncomfortable the bed wasn’t very comfortable and everytime I moved my shoulder it was giving me pain. The nurse came in through the night and tried to make me comfy, she was lovely all the nurses were lovely. I sat up and was in agony and crying, she called for another nurse to hold me up whilst I was being sick and was having hot flushes, I still am for some reason if anybody knows why please let me know. I know that after the surgery hot and cold flushes are normal, but nearly 3 weeks later and I’m still the same.
On the 5th day in hospital I was getting restless been confined to my room, which I know I was very lucky to have my own room, but I am not the best with stagnant air and was longing for some fresh air. My sister and one of the Nurses suggested me and Danny to go out in the wheel chair as I was doing much better. By this time I was rid of all the tubes and just having paracetomol for the pain, so walking around was much easier.
We went out for something to eat close to the hospital, it was gorgeous weather and the fresh air felt amazing on my skin. We didnt manage to stay out too long as my back started to hurt quite badly. A classic case of trying to run before I could walk, but I am still glad we went out because it was starting to really get to me being stuck in the hospital.
My first emotions were after having the op and everything is back to normal, and not a stoma bag in sight, but this is my reality, this is really going to happen! I looked at a blog last night on a website I found, this guy had been for his op and in his own words and pictures shown graphically of the scars and the stoma bag, I highly recommend looking at the website, I found it very informative and I am so glad that I did look at it when I did as I had know idea what the stoma would look like. The stoma bag, the scars it did and has freaked me out, not to the point I won't be having it, but now my thoughts are turning to been put on the bed and getting wheeled down to theatre, leaving everybody and can imagine it will be upsetting. Then waking up to i’m not sure how much pain and discomfort but then getting used to having a stoma bag.
I do feel that more should be talked about,more information to be given before the operation, because as far as I knew, I would have an operation and have a long recovery and then over, but it looks now, that there will be another operation after something called a j pouch, which I have never been told about, so whether what I was looking at last night is different to what I am having, or I just haven’t been given all the information about the operation!. The NHS are shocking that in 3 years this was never mentioned as an option a last resort maybe but all the same an option. I find it disgusting.
So from July through to now, I have had more accidents than I can remember, more so when I have been stressed or eating something that didn’t agree with me, but it has happened everywhere. The times it most happened was in the car either to work or coming home from work, it was awful there was nothing I could do they were awful times.The most embarrassing place has been at work, I have had to go home get changed then go back again, awful times are coming flooding back, and even though I am still not in remission, I haven’t had that happen for awhile. Work have been great, really understanding and helpful and supportive, and have even given me my own key for the disabled toilets, to hopefully help with the urgency situation and so far it has a lot!
When I am bad I can literally go to the toilet 20 times a day, so with that comes tiredness, weakness, short tempered, looking ill and pale, and now I am anaemic from loosing so much blood everyday, everything that everybody with this condition who has flare ups will understand. It’s really difficult sometimes, even with an understanding partner, when you are tired at 7pm and are going to bed and then up 6-7 times through the night maybe more, maybe less, you don’t also get to spend a lot time with them. I know this condition is not a cancer but it is bloody awful and I hope and pray that somebody can find a cure for this, because even though it isn’t a cancer, it is very restricting.
This link is to the one that I talked about in this post, well worth a look: http://www.jpouch.net/
Before I had this awful awful condition I have never even heard of it, but because it is far from glamorous it rarely gets spoken about in the media, which I understand to be honest, people who don’t have this or don’t know anybody who has this, wont want to hear about it, is it ignorant? That I think is down to opinion.
I am writing this because in less than 2 weeks time, I hope to be rid of this ball and chain round my neck (colitis) and I want to look back and remember just what a burden this was on my life. In your 20’s when you should be going out partying socialising anyway, it makes it extremely restricting.
Another reason why I feel so strongly about having this operation is because me and my partner would like to start a family and I cannot begin to think about this until I am in good health. I feel let down by the NHS I have been seeing the same alledged specialist at my local hospital since the start and near enough everytime we have gone he has just prescribed me stronger drugs and more of them, there was no care or even consideration for my well being,
I am going to try and remember all this, because I hope that in a few years, looking back, all this will just be a distant memory.
I went down to the doctors and cried and told him how much pain I was in, he said that I had caught a kidney and bladder infection from the enema having colitis, I had a week off and work at this point was ok with me. At the same time, my partner and I were having major money problems which resulted in us falling out a lot, I wasn’t very happy at all, and stressed out more than I probably ever have been.
The colitis started to have an effect. Firstly it wasn’t very much just a bit of abdominal pain, but not so painful I couldn’t cope with it. After yet more tablets, I did start getting better, went back to work but decided I wanted a fresh start and moved jobs.. I started my new job in December 06 and because I was happy, Danny was doing well at work, things felt more settled.
July 2007 I had my 2nd flare up, I don’t really remember that much about it, I just was struggling to eat, was passing blood which was black and of course the dreaded runs. I went to see the dr again, he told me that I had to go up to the hospital straight away, because he didn’t want to alarm me but was worried it may be a stomach ulcer. I had tests and because I hadn’t been able to eat, was put on a drip for a day.
My Mum & Dad didn’t get my illness, probably because I didn’t, and I never remember speaking about it. Danny and my family might remember differently but it really wasn’t a burden on my life. My flare up went on for a few weeks which at the time I thought was bad, but I’d get to know that actually that was very minimal. From October 2007 to July 2008 I was fine again, to the point I forgot that I had it, my weight was normal, I could eat normal, go out normally, have a drink, everything that you take for granted. I went to see my Dr at the hospital and I remember him saying, you look well, your eyes look quite bright, I want to take you off asacol enemas. I was a bit reluctant but he said as long as you carry on with asacol tablets you will be fine. With him being a dr you would think he would know what was best but clearly not, within 2 weeks I started my 3rd flare up and up to today It has not stopped.
It started just as normal, cramping, limited to what you can eat which I thought was bad enough, but nothing compared to how bad I did get. I found it hard at work because I didn’t want people knowing what was wrong with me, because to explain your condition to somebody who you don’t know very well is embarrassing for anybody i’m sure and definitely no different for me. My supervisor was great when I got to the point that I had to tell her. You can’t be going to the toilet 10-15 times a day and think that nobody notices. Within a month I had started to get really down about my illness, and it really started to show mainly at work. At the time I thought I could cope with it, but clearly I couldn’t, and soon started getting depressed.
The depression I find is harder than the colitis, again that’s my opinion and not everybody’s. I have never experienced anything like it in my life. The hardest bit was understanding and accepting that I had depression, which I saw as a weakness. but I knew that I had never felt anything like it before. It amazes me how negative you are, and that you have no control over it, you think you have but you haven’t. I don’t remember a lot of that time, other than that I was sinking fast. It upsets and unsettles me just thinking about it, and all the while nobody really knows what you are going through. Again went to the doctors, which started to become my 2nd home, I told him how I felt but again I can’t remember what he said because that part of my life is a blur, going to work coming home I don’t remember any of it. My mum suffers with depression, I admit that before having depression, I thought it was a state of mind, you choose to feel like that, it just shows what little I knew and people who think that know, because it is not like that at all. It is not about how strong or not strong you are, but you literally have no control over it. Seeing my councilor helped even though I thought it didn’t looking back, she was great. I sent her this text when I was at my lowest:
'Don’t really know what to say had a hard week feel like I don’t know what is happening to me really. I think from what i’ve read on the net I could be depressed, feel quite lonely really like I don’t have any control over anything and I feel scared of how I am feeling. I was going to get in touch earlier on in the week but thought I would start feeling better. I’ve never felt like this before its very strange. I think I am going to see the doctor about maybe getting some tablets which I didn’t want to do but I can’t cope with this much longer. It worries me a bit that if I go on them and might not be able to work out if it is me or the tablets thinking.'
I sent that on the 17th August and it is the first time I have read it since, wow can’t believe all that went in a text, but that was just how I was feeling. I was so scared of how I was feeling, and even though I am still on the tablets I definitely don’t feel like that now..
I have been with and lived with my partner Danny for 4 years and this isn't an easy thing to go through for either person, but we have tried not to let it control our lives. It has been hard like any colitis sufferer knows, when you are not in good health, you don't have a good lifestyle, unfortunately they go hand in hand.
I have been lucky that I have had the support from my family and friends through the time having colitis and the depression which both are not easy things to go through, but I feel much stronger now that I have been through them and come out the otherside and I really hope that anybody reading this blog can relate to my story and see that there can be a happy ending.
It’s important to remember that this is my journey, what I have written here may not necessarily happen to you, it just gives an insight to the before and after surgery. I hope to continue with this blog throughout the 2nd operation and hopefully only share good news with you.