thefirstcaro: (little women laurie jo proposal)
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Today is January 10 2009. On January 10th 2008, I had my panproctocolectomy and I got my life back. It's hard to believe that a year has passed since that surgery because I've managed to get back so much of what I had lost in the previous three and a half years. I'm going to post about this because without seeming like I'm tooting my own horn here, I'm proud that I came through those years of hell with my sense of humour intact and my sense of self. I made a promise to myself that I wouldn't let it break me, that I'd somehow keep my spirit alive so that when I did rejoin the world, I'd have a better chance of getting back in step with it. I didn't want to be bitter or broken by it, I wanted to be able to appreciate what I had gotten back. If that sounds like teal deer, I'm sorry so I'm putting the rest of it under a cut that people can just scroll by. But another reason I want to post about crohns and life with a stoma is to maybe show that just because you have sometime different about you, it doesn't mean you don't have something to offer or that you can't have a life and go out there and do what you've always wanted to do. Crohns didn't hold me back until it got very severe which meant I had to have a permanent stoma. But that doesn't mean the end of me, it just means the beginning of a different me who has a different perspective now on things and maybe that's good. It's no harm to see things differently. Though if there had been an easier way to gain this perspective, I would not have minded that at all!

Brief recap: I was diagnosed with Crohn's disease when I was nineteen after severe weight loss because the disease made me anorexic. I wanted to eat but couldn't. Even the smell of food made me feel physically sick but not eating didn't mean that I was running to the bathroom less. And that's the thing about Crohn's; you don't talk about it because so much of it involves fleeing, and I mean that literally, to the nearest facilities. Imagine the worst stomach flu or food poisoning you've ever had and that is some of what it's like to have a Crohn's flare. Even when you're in remission, it can still give you reminders from time to time that it's not really gone anywhere so you tend to shop near where toilets are within easy distance. In a theatre or cinema, you sit on the aisle near a door so you can hop out without any delay. You stay away from certain foods in case they trigger an attack so your diet gets bland from time to time if you have a lot going on and you absolutely cannot afford to be hopping up and down to the loo every few minutes.
I was on medication which put me in remission from 1996 - 2004 and it was great. Apart from a few minor flare up's couple with fatigue (another symptom), I was able to work, go out, travel, basically I had a life until June 2004 when I was coming home from work and had a bathroom accident. See what I mean about not talking about it because who wants to admit to that? And I know that might be oversharing to some but I'm only mentioning it here because until the surgery, it was a part of my life. It controlled me because if I was going out somewhere, I wouldn't eat for fear of it happening again so many's the time, I'd get up in the morning and not eat anything until maybe three or four in the afternoon when I was safely home. I had a safe bland diet and occasionally I'd bake myself something nice with spelt flour as a treat. In January 2005, I lost my job as head book cataloguer because I had to take so much time off due to being sick from June to November. But I made myself keep going to work even though the constant fear of another accident either walking home or at work was giving me panic attacks from time to time. I didn't want to give into it. Then my doctor started me on a high dose of steroids and I got a job as a cinema duty manager. But as soon as I came off the steroids, the symptoms came right back and just played havoc with my nerves. Whatever about feeling sick sitting at an office desk, having to run a cinema and be responsible for dealing with customers and cashing up people when I had no energy because I was back to not eating and the fatigue meant that even when I slept all day on my days off, I was still tired getting up for work the next day. When I started having pains in my chest, I knew I had no choice but to pack it in.
So in April 2005, it was trying Remicade, or Infliximab as it's also known, which you get in IV form every eight weeks. It takes two hours and here you have to go to the hospital for it and whatever gastro intern is on that day hooks you up. A lot of the time, it took longer to get the intern to come to the ward to start it off than the duration of the infusion. Remicade has its own side effects, they talk about cancer but at the time I just felt so bad, it was worth the risk. It took a few infusions for me to feel a bit better and it did work until August 2006 but after that, the symptoms started to gradually creep back up. But it was March 2007 that really showed that something was wrong because I started getting these godawful pains. They would start in my lower back late in the evening and by one in the morning, the pain would be in my abdomen and it was what I imagine labour would be like, only it never eased off. It distended my stomach and I'd be walking around the kitchen until it eased off. All my coping mechanisms, tried and tested through so much, were of no use to me because I couldn't sit comfortably, I couldn't lie down, I couldn't curl up into a ball, I couldn't walk around, nothing would ease it. It all hurt. And it would not go away until after eight in the morning, if I was lucky. Which meant I'd go to bed, fall asleep and be absolutely wiped out for two days afterwards. Because anything could set it off, I ended up only being able to eat half a bagel a day and even that was a struggle. My weight had really dropped by this stage because I hadn't gotten any nutrients for months, I couldn't absorb them so I was about 9st 10lbs which for me, at 5ft 6 isn't a good look. It might have helped if I hadn't the pallor of Morticia Addams so my mother was absolutely frantic but kept it to herself because she knew better than anyone how much I wanted to eat but couldn't. I couldn't go out, I couldn't accept an invite to lunch or the cinema because I didn't know almost up until it was time to go, whether I'd be able for it. There were a few people I felt safe going out with because if I had an accident, they would understand and take me home. But like I said, that wasn't information I was going to share with just anybody so some days it was easier not to go anywhere. I didn't want to turn into that person who always had people coming to them but what could I do? I just couldn't leave the house for weeks on end.
All this time I was going to my gastro and saying this isn't working and he'd say, give it another while, because my bloods were coming back fine. The markers weren't showing up any inflammation but I knew this wasn't right and I kept telling him so. I used to burst into tears in his office but I didn't give a damn because even the act of sitting in the waiting room where anybody might be in the toilet if I needed it was scaring me. One time I swear to you, I nearly started screaming in the place from panic and worry. I had to sit there and close my eyes and focus on the radio and try to calm down. That's how much of a head game it was playing with me. Finally I demanded a colonoscopy and it showed that my intestine was pretty fucked up and he put me on another high dose of steroids which abated the symptoms but didn't fix me and we decided that surgery was my only option. I think he was waiting for me to have another breakdown in his office but I just there and said that was fine by me. Because I'd had enough. That was in June 2007 and I had to wait until December to see the surgeon, thank you health cutbacks!, and I stayed on steroids the whole time because that was all that was making me functional. Of course, the steroids turned me into a bloated mass of crazy who could be relied upon to eat everything in front of her and then start to cry and rant about how someone left a book in the wrong place and OMG! they must be destroyed! My poor family.

This is a bit long so if anyone cares to read part 2 about life with a stoma, I'll do that in another post.

Date: 2009-01-10 01:56 am (UTC)
From: [identity profile]
I want to read more. I've had my own digestive woes and I think your story is fascinating. But that might be the nurse talking. I know it is when I say I admire you for deciding to have your entire bowel removed and live with a stoma. That's a big deal for anyone but it's a major deal for a young woman. I'm glad it's working out so well for you. You deserve it after all of that!

Date: 2009-01-11 11:31 pm (UTC)
From: [identity profile]
Thanks very much. Thing just kind of fell into place afterwards and I was very glad of it.

Date: 2009-01-10 01:59 am (UTC)
From: [identity profile]
Wow. It's amazing how much Crohn's can affect your life. I'm glad you were able to find a procedure to let you live your life and not be at the mercy of your colon.

A friend of mine gets Remicade now for her RA and she seems to really like it. It's interesting that it can be used for such various diseases.

Date: 2009-01-11 11:32 pm (UTC)
From: [identity profile]
Yeah, remicade was actually invented for RA and when they saw how it reduced inflammation, they looked into how it would work on other inflammatory diseases as well. I'm glad it's working for your friend.

Date: 2009-01-10 02:46 am (UTC)
From: [identity profile]
Thanks for posting this, because I intellectually knew what Crohn's was, but I didn't get how fully it would impact your life.

Date: 2009-01-11 11:35 pm (UTC)
From: [identity profile]
It can really play headgames with a person. Of course then you get some who say that if you really make up your mind, you can control how often you need a bathroom. Like, yeah, it doesn't quite work that way. It would be great if it did!

Date: 2009-01-10 02:50 am (UTC)
From: [identity profile]
This is really interesting stuff. I don't think Crohn's in women is really high-lighted. I have mainly known men with it.

Date: 2009-01-11 11:40 pm (UTC)
From: [identity profile]
Maybe it's just this country but Crohn's doesn't get highlighted much at all. Which makes it all the scarier when you're diagnosed and they just send you home with absolutely no advice about what to do. There is a national organisation but they're completely voluntary and by no means as funded as the UK one.

Date: 2009-01-10 02:58 am (UTC)
From: [identity profile]
I'd like to hear the rest of the story as well. I think you have a remarkably positive outlook on this, and I am a huge sucker for a success story. Which, of course, you are.

Date: 2009-01-11 11:41 pm (UTC)
From: [identity profile]
Thank you so much. I really appreciate hearing that.

Date: 2009-01-10 03:34 am (UTC)
From: [identity profile]
Thank you for sharing, because as someone said earlier, I'd heard about Crohn's, but never knew its impact. I'm glad you are finally able to live your life the way you want, not by where the toilets are.

Date: 2009-01-11 11:45 pm (UTC)
From: [identity profile]
I tell you, after the surgery I found myself walking down streets I hadn't been down in years. It was rediscovering the city!

Date: 2009-01-10 06:11 am (UTC)
From: [identity profile]
As others have said, I've heard about it, but don't know much about it. I've had that horrible needing-to-go/whoops! there I've gone! feeling before (and my sister gets it constantly - Down's syndrome = weak weak stomachs), but obviously nowhere near the amount you faced with Crohns.

I'd like to read more, for sure.

Date: 2009-01-11 11:47 pm (UTC)
From: [identity profile]
It's very much a heart-sinking feeling isn't it?!


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