Sunday, 11 August 2013

My Life With Crohn's Disease & A Temporary Ileostomy

I thought I would tell you all about my life with Crohn's Disease & all that has happened since my diagnosis. 

My symptoms began as early as 12 years old. The pains though would only last for a few hours & probably once a year. I was not sick at all during these episodes & did not even suffer with diarrhoea . The doctors put this all down to "growing pains" & when I was 14 even asked my mum if I could be pregnant. As it was only for a short amount of time it was difficult to think that it could be anything else.

It wasn't until I was around 17/18 that things began to get much worse. I would have an attack of severe stomach pains lasting probably just 1 day but the recovery could take anything up to about 3 weeks. This was due to the fact I think that I was so very sick that I could not keep a thing down , not even water. Thus It would be a good week after these attacks that I could even begin to eat more than a few biscuit crumbs. I would be very , very week. The worse things were that not only was I off work an awful lot( which almost made me feel more ill) but the drs did not seem to think there was much wrong still & I would get prescribed IBS pills too. Needless to say these did nothing for me at all & I would generally have to just wait the time out. It was a very lonely time because at the time we lived out in the country & any friends were either at work or college during the days & it was quite a trek at other times. I spent most of my time feeling guilty because I knew that most people did not believe I was that ill.
I can only ever describe the pain to people as someone take hold of my insides with their bare hands & twisting. Twisting for a long time before letting go. Then it would start again soon after and so on for a very long time.

Finally though when I was 19 the doctors began to listen to me & in April of 1993 I begun tests to see if they could find a reason. At 1st I was at home, just going for tests at the hospital, then coming home again. However when I was due to have my 1st colonoscopy & I could not keep down the prep that I was meant to take the day before & ended up having to go in to hospital where they tried again to give me prep. After the 3rd failure they decided I would have an enema. Not pleasant but better than having to take that awful prep & bringing it straight back up again.
I ended up staying in hospital for 5 days. I was relieved when they finally could tell me what was wrong  because there were even times when I thought I was making more of things than they were. I did not know much about Crohn's Disease back then other than the name  & even now some 20 years after diagnosis I learn news things all the time about it.
I was prescribed steroids for a few months before I was taken off then. After that my attacks would still stay for a long time but they were less frequent. I could sometimes go a year to 2 years without a proper attack. I would still have off days in between but i would just try to get on as best I could. The worst attack after that though was in August 2001 when Rob & I had to cancel a holiday to Tenerife. One of those things though.

When I fell pregnant with Bradley in 2002, I was told by many doctors that sometimes it can actually help the CD in some ways. This was actually true for my whole pregnancy & up until September 2006 when everything came back with a vengeance. I was back to having 2/3 attacks a year & treatment of steroids each time. Whilst I did not have a job or work colleagues to think of I did have a small child to take care of so it was a really difficult time especially as just after it returned Rob lost his mum to cancer. That time really did suck :-(! 

My pregnancy with Finley (2010) was a much different story. I had 2 small attacks whilst I carried him. Then in Feb 2011 things were finally coming to a head. For about 7 weeks my time would alternate between 2/3 days of stomach pains etc , then I would be well again for the same then BAM. I was seeing my consultant in the meantime for a check up anyway so mentioned to him because actually the pain was totally different. Where my usual CD pains would generally be nearer my pelvis ( almost appendix postilion a lot of the time) this was much nearer the top of my stomach & it was more of a constant bloating pain. So although I had 7 weeks of this I was not totally unable to carry on with life. With Finley only 6 months old this was just as well but It did mean we spent a lot of time at home without seeing people. Anyway , he agreed that it did sound different. He said though that we would assume it still was CD but do some tests as well. I was due to have an ultrasound & an endoscopy. Well I went for the ultrasound but then the early hours of the next day (19th March) I awoke with the worst pain I have ever been in. The pain was almost constant. I could not keep anything down. The moment even water entered my system it was quick to reappear. By the time morning came round properly I was a mess. The frequent trips to the loo & being sick had taken their toll. I was crawling back to bed on my hands & knees. I'll be honest I was terrified! 
Rob had stayed home & called my parents so they could look after the kids whilst Rob tried to get medical help. In the end it was decided to just ring for an ambulance. My last image at home was of being brought down the stairs in the chair & looking across at mum holding my 7 month old son. I wondered at the time if i would ever see him again ( and yes I am crying whilst writing that bit.)
I was taken to PRH first before being transferred to Brighton as I think they knew already that surgery was probably the only option.
So at Brighton I was finally able to go on a drip, the pains actually subsided & I begun to actually feel a little less scared as the fog began to clear a little. Anyway soon after I was moved form A&E to a ward. Where I stayed until I finally had surgeon the Saturday (21st.)
I had to have an temporary Ileostomy (stoma.) I believe a lot of this was due to loads of scarring from previous attacks & subsequent treatment of the steroids. When I spoke to my consultant a few weeks later he was actually gobsmacked after seeing the CT scan images etc that I had lasted as long as I did without surgery.
I was in hospital only a week all told which I know is quite lucky really. I was told by others on the ward who had , had the same op the day after mine that I looked amazing considering. This was quite nice considering I didn't particularly feel like I looked good & was quite out of sorts really for a while. I missed the boys terribly. I saw Brad the day after my surgery but I was so out of it that I didn't feel like I saw him properly. When they both came to visit me the day before I came home , I cried my eyes out when I saw them both especially Finley who seemed to have changed so much in the time I was away from him. I also felt sad because he was looking more towards my mum than at me. Not that I was allowed to hold him but it broke my heart that he did not reach out for me.
Anyway I should have only had the stoma roughly 6 months. However due to a mix up of 2 ( them not us) I did not have the colonscopy that my consultant wanted me to have until Feb 2012. Then that came back unclear so I had a 2nd one plus 2 x-rays with dye throughout the course of last year. I felt last year was rather a waste of time as between both departments ( surgery & medical) they were driving me mad with indecision.

Anyway finally in April of this year the Surgeon decided I could have my reversal after all. So I was delight to watch him feel out the card for the waiting list.
However to confuse things in July I got a letter from him saying he had spoken to the consultant & they decided they were still not 100% happy & now I need to have a Sigmoidoscopy. 

So, that is the stage I am at right now as I am due to have that done on 20th August. By the surgeon so I hope he can give me a good idea on the day of what the next step is. More surgery to remove the stricture they believe is still there or to do the reversal. More waiting then...

The things to remember ( which I have to tell myself a lot) are :-

*That actually I could live with my stoma for life if i had to. After all I have had no Crohn's symptoms in 2 years whilst I have the bag. Many people do choose to keep it. If it is decided that I will have to have the bag forever then so be it. I will have to deal with it. My issue has always been though that I wish they would actually make up their minds. 

*That I was lucky to go so very long without needing any surgery. Also that it is still only a temporary situation at this stage , whilst some have the whole colon removed & the stoma is there forever with no question.

*Whilst it is annoying to take a few steps back after moving forward, I know they are only ever doing what they think is best for me.


It is annoying though to:-

*Clothes shopping. It  was bad enough before the stoma but now everything has to hide it plus be comfortable around my tummy area.

*This heat! It can irritate it beyond belief & also because I get so hot I need to shower more meaning a nice wet bag & it is not always a good time to change it.

*Having to make sure you take supplies with you on a day out just in case it leaks etc. Going on holiday is a nightmare as you have to kind of 2nd guess how the stoma is going to behave & if you have enough. So far we have only gone away in the UK so it has been a little easier.

* When it does misbehave. It can get very sore, very itchy. Then you have to change the dressing, but sometimes it still hurts so you have to change it again & THEN it becomes sore form so much changing! 

The thing though above anything though is that I am still here to tell the tale. I have no idea if that day whether we had not called anyone & just tried to get through it myself whether I would have ever recovered. I don't think about it too much because that is way too dramatic & Rob would not have let it go on much more before taking my to A&E himself . However in my darker moments it now & then enter my head.)

Anyway I think I have probably gone on way too long. The thing is though for me this has always been a long story & there will be many more chapters to come.
I will quickly apologise too for any spelling mistakes. I have tried to spell check as much as I can but this has come from my heart & thus I am writing as I think only.
Thank you if you have read this far. It means much to me that you did.

Amanda xxxx

1 comment:

  1. I think you are brave for sharing this story. x

    ReplyDelete